Saturday, October 27 2018
This is not a paid advert or collaboration, just me finding a great deal to pass on.
I have tried all year since reading the Barefoot Investor to find savings where I could through reviewing our bills and that with other providers and even had power panels installed through an interest free payment offer.
One of the bills that has been bugging me, is my pet insurance for Dusty, I know many think it is a waste of money to insure your pet but it is something that could help save big costs. With Dusty's breed of cat, we were recommended by a vet nurse to get insurance and go through Pet Plan.
We signed up a policy when he came to live with us going on 2 years ago to this date and at the time the plan was great and affordable at $36 roughtly a month. But once the 12 months were up the policy jumped up, and then up again and now is sitting around the $63 a month, almost doubling and I am no longer feeling confident with our policy. We haven't needed to use it yet but it was a large cost that had doubled for almost no reason.
So I was on Kogan the other night looking for a gift for Russ for Xmas, when I saw an advert for pet insurance and was curious. I was intrigued by the first month free, but also that the plans looked similar to what I was paying currently with Petplan but at a much lower rate.
I signed up and emailed to cancel my petplan and pray that Dusty doesn't get sick and needs a vet, but at least if he does we have cover.
Best of all, it is now only $39 roughly a month instead of $63 and to our budget and pocket that is a big saving!
I am interested in learning more about their mobile and internet plans, 2 years until our contracts are up but never too early to research options.
That is our power reduced, our pet insurance, our car insurance and our home and contents insurances this year, I think I have done well to make a little savings in each policy.
I always feel productive when I have done some adulting, Russ is even happier if it comes in under budget. Or when Xmas comes early...
Oh and as for Russell's Xmas present (the whole reason I was on Kogan to begin with), I ended up finding it on a different site for $30 cheaper, it arrived on his day off and he opened it and started setting up before I had realised, so now he has his Xmas gift and he loved it. It was a pokemon go lego like (mega construx) and was a big gyuarados (the evolved form of Magicarp) so Russ has been happy. Found it on ToyDeals.com.au for $30 plus post, but still was cheaper than most sites, quick to arrive too (couple of days too). also not a paid mention, just a damn good find!
Crazy that Christmas is so close, it also means that the Share the dignity #itsinthebag promotion is on soon too, better get started on that myself. I am not anywhere near organised this year!
Disclaimer: I was not paid or asked to write about this, I found and paid for this plan myself and thought it was a great buy to pass on to you, always read the PDS to make sure the product is right for you.
Monday, October 15 2018
I posted on social media the other night (well, last Thursday) a teasing photo of a delcicious hearty stew I had brewing in the Slow Cooker, it sparked so many asking for the recipe, so here is the stew recipe and story behind it.
Please note: I have not been paid by any of the companies I mention when it comes to ingredients I use, you can always opt for your own preferred company of choice, but this is my stew and how I have made it for over a decade.
Story behind the Stew:
I first learned about this stew when I was staying over at a friends house in year 12 and we went to spend the day at her Grandmother's house and she said "girls since you're leaving home soon I better share an easy stew recipe". So we cooked it and she talked us through it and she gave me a copy, I started experimenting making the stew and adding in different ingredients and was determined to make it my own.
It is one of those stews that are perfect for wintery cold nights or if it is raining outside and will be rainy days ahead it is nice to just pop the stew on to cook in the slow cooker and wait for it to cook, meanwhile enjoying the smells as they fill your house for the next 8 hours.
I also find that we can get a few days worth of meals out of this, we put as much as we can into chinese containers and pop them in the fridge and freezer, but one chinese container is one bowl full for one person.
But don't ask me the calorie intake, I have no idea but it is just delicious, and Russ loves it too! You'll want seconds it is so good!
You will need:
Ingredients: (I get all my ingredients from my local Woolworths)
☞1 x large bbq chicken [ or you can cook your own chicken, ] for time management and ease I use a BBQ chicken (it is the most costly component), sometimes you can find cold chickens which is just as good to use and cheaper too
I think that is all the ingredients, now for the making of it
Step 1. Locate your slow cooker and plug in to power, add 1 cup of water and turn to high
Step 2. Wash your fresh vegetables like sweet potato, carrot, potatoes just wash but keep skin on (when it is ready the skin just easily fall off), if you're adding in fresh brocolli or brocollini or cauliflower wash these too.
Step 3. Add in the cans of Campbell's condensed cream of chicken and corn or cream of chick soup cans into the slow cooker.
Step 4. Add in the canned vegetables.
Step 5. Add in the Continental cup a soup creamy garden vegetable and creamy chicken and corn with croutons sachets.
Step 6. Mix all the soup together
Step 7. Next add in the BBQ chicken by tearing off small bite size pieces but not adding in the skin, bones or stuffing
Step 8. Mix the chicken and soup mixes together
Step 9. Add in the shell pasta and mix it all together, add more if you think it needs more, but not too much more.
Step 10. Add in the pieces of cut chunky fresh carrots, sweet potato and potato. Stir it all together.
Step 11. Add in the frozen vegetables and stir it all together.
Step 12. Leave on high for 2 hours, check roughly hourly and stir, it can be messy as it will rise and thicken as it cooks.
Step 13. After 2 hours turn to low for 6-8 hours and check hourly and stir
Step 14. Leave it on low for another couple of hours if you think it needs longer.
IF DISCARDING STEP 14, turn it off and serve.
Step 15. ENJOY your delicious thick stew
* We love to buy the packs of dinner rolls from the woolworths bakery and pop in the oven so they are hot and fresh for when we serve up our dinner, we cut them along the tops and we stuff spoonfulls of stew in there and then eat it like that. We also use bread not toasted but buttered to scoop up the soup and it just is delicious.
Step 16. Fill up containers, we use takeaway chinese containers and pack these to the brim and pop 3/4 in the fridge and 1/4 in the freezer. We find with the 2 of us we can eat this for lunch and dinner for a few days using the fridge containers, often Russ goes back for a second bowl.
I have made this when I have had my kid siblings come and stay over the years or my MIL and they have loved the stew. It is so easy to make and all the effort is in the preparation and the slow cooker does the hard part. I would cook this if it were cold and miserable weather, or if it is raining, nothing says snug as a bug as a hearty winter stew whilist nestled under blankets enjoying a movie.
We made this Thursday night, and I say we as I sat and supervised Russ and told him what to do as I wasn't up for standing in the kitchen for even half an hour or less (pain). But Russ loves when "we" make stuff together, he loves learning how to cook some of my meals that he loves.
We started cooking this at 7pm Thursday night and was cooking when we went to bed, and the aroma wafting through the house had my tummy rumbling all night. We would check it every hour and then we turned it off and put it in chinese containers and went back to bed. So it was exciting to wake Friday and have stew for lunch, and dinner and we still have a couple of bowls left.
But I have to be careful with my stoma, luckily all the veggies and chicken break down so soft they just fall apart and then i try to take the skin off to avoid a blockage, but as I have had so much and it has caused my output to be rather thick and caused a blockage, so just keep that in mind if you're an ostomate prone to blockages that it does make things thick.... but it is so delicious!
Our Slow Cooker:
This is an adorable story, we got our slow cooker the first Christmas we were together (2009). We spent Xmas Eve with Russ' family who were up from Melbourne as we planned on spending the next day with my dad and family. So we unwrapped our gifts and our joint gift from Russ' family was a George Foreman slow cooker. I was so excited as I had been saying to Russ I wished we had one as I was missing being able to cook my stew.
So the next day we went to Xmas at my dad's and he handed us a joint Xmas present which was a slow cooker! we laughed as what are the odds of getting 2 slow cookers! I was really appreciative and thanked my dad but Russ' mum made a comment how she beat them to it and we had one already, so dad took it back to the store as it was unopened ( we already opened the one the night before as I was keen to make pinterest desserts) and he bought us something else.
I remember one Xmas dad wanted an electric sander so he bought one for mum so she could use it, and that same Xmas mum bought dad an electric sander so she could use it. It still makes me smile even though I was 10, it made me laugh that Xmas with the slow cooker remembering the electric sander gifts.
So we have been enjoying our slow cooker for quite some years now, I used to use it more when I could easily jump in the car and go get groceries and was more independant, but I am wanting to make slow cooked lamb shanks for Russ next winter.... but I have been trying to convince my nan to get a slow cooker as she would love it, pop the meal on in the morning and smell it cook all day.
Tell me, what is the favourite slow cooker recipe of yours? Mine is definitely my hearty stew.
If you do manage to make this please let me know how you went!
Wednesday, September 12 2018
This post is a collaboration between Feeling Ostomistic and Electricity Monster
You might recall from my post earlier in the year about "18 goals for 2018," that I wanted to find ways to reduce my bills/expenses - especially power - and that I wanted to do my bit to save the environment (such as getting solar panels installed and reducing my waste). I had read the Barefoot Investor and was determined to implement changes and see better financial stability this year.
Last year our bills were up around the $1000 a quarter mark, it was definitely a huge expense for us and each time the bill was due it was a stressful time.
I thought getting solar panels on would reduce my power bills dramatically and had hoped the huge outlay of costs would help us reap the rewards of cheaper power. We'd hoped we would see the value of our investment almost immeditately, but several months on we weren't yet to see a change in our bills or power consumption.
Our bills were still between $500-$1200 a quarter!
I was determined to find better deals and had tried to compare all the companies individually, but with my health and not having much attention span due to medications, along with not quite understanding all the charges and components of the bill and how to accurately compare, it was becoming a rather daunting and overwhelming task... so it was put in the "too hard basket".
I wished I had of known then that there were power brokers like Electricity Monster that existed!
It wasn't until this week that Russ was really wanting to get the power sorted, especially as it is heating up in the lead into Summer, when we would be using more air-conditioning and power (due to health reasons I struggle in the heat so need the air conditioning).
I stumbled across an article by Electricity Monster online when I was searching for "ways to save on your energy bill" and some of their savvy tips sounded great and easy enough to try and implement into our household.
As I scrolled down the page I saw a sidebar advert that said "do you want to lower your bills?" and I was very intrigued. I submitted my details and awaited a call back.
I can excitedly say that finding and comparing plans was so easy!
Electricity Monster are brokers for power and can help you find a better deal, even for internet plans too! And the process is so quick and seamless.
After paying almost thousands each quarter, the idea of not having a bill or if we do have end up with a bill it would be a very small bill, it is all very appealing.
I checked with Russ to make sure he was happy with the proposed new plan, and he was. So off we went changing providers, and we didn't have to do anything, Electricity Monster did it all for us!
But I am just so happy with how efficient she was at comparing all the deals out there and finding ways to reduce our bill to the point we shouldn't get a bill and if we do it will be minimal, and best of all I didn't have to do anything except send her a copy of our bill via email.
Wanting to try the service yourself?
It is absolutley free to do so, do check with your current provider if you have any locked in contract or any exit fees, thankfully it wasn't costing me anything to change and I am not locked in with Power Shop or have exit fees too, so if I find in 6 months it isn't working out I know I am not obliged to stay, but if the bills remain as small and minimal as we are expecting I shouldn't have a need to change.
I spoke to Cyprus who was a really knowledgable broker who has been in the energy business for a while, so she knows what she is talking about. She also deals in internet brokering too. You can reach Cyprus on her direct line 1300 232 848 or via direct email and feel free to let her know I sent you.
I really hope that you too can save money just like I have and I am excited at the thought of cheaper power bills (aren't you?).
Disclaimer: Whilist this was a collaboration between Feeling Ostomistic and Electricity Monster, all the experiences and opinions are entirely my own and based off my own experience of the company. I would never share something I haven't and don't use myself and this service helped save me hundreds each quarter off my power bill, and I genuinely believe you could save too
Monday, August 20 2018
I think this title is appropriate as we were served chicken for dinner at the awards night, sorry just being cheeky.
On Friday the 17th of August, Russ and I drove up to Brisbane to attend the 2017 Great Comeback awards held by Convatec. I know we are in 2018, but it was 2017 when I applied and so the award is for last year but it is in this year which is confusing, but anyway, I won!
I was 1 out of 5 finalists from Australia and New Zealand.
It was such an honour to have been made a finalist, and I was incredibly shocked and surprised to have found out on the night that it was me who had actually won! There were so many deserving and inspiring finalists who have incredibly powerful stories to tell.
On the night at the awards ceremony, which was held in the brand spanking NEW boutique hotel called Emporium Hotel South Bank (I am dedicating a whole separate blog post to this, so stay tuned), there were video interviews of each of the 5 finalists presented. Each video is around 2 minutes long and consisted of images or videos being added in to share in the impact of the story.
I was in tears watching the videos, then mine, which was last to be presented, had me in a complete blubbering mess. I was so embarrassed as it was MY story and I know this sooooo well so it surprised me that it impacted me the way it did. I assume it was a build up of emotions felt on the night, I was incredibly anxious but I was also very overwhelmed, so once the tears started I couldn't stop.
Please keep in mind that the original video was 22 minutes long and was chopped down to 2 minutes for the ease of viewing, so a lot of important points I made were missed. I did also thank my friends and family and also those who read my blog and my tribe who encourage me (you guys), so I don't want anyone to be upset if they didn't hear it mentioned (because it was).
If you have an ostomy, or know someone with an ostomy who has a story to share and have done something inspiring or had a comeback post ostomy life, please let them know about the awards. It could be something like pre ostomy life you were too sick to travel so once you had an ostomy you travelled, could be you returned to work, you did something you have always wanted to do, you started a movement to inspire others, you went back to uni and graduated, or you found yourself and the joy of life from having an ostomy.... or it could be whatever your heart desired that you feel you made a great comeback thanks to your ostomy....
The Great Comeback is entirely your own comeback after ostomy life and could be anything, or could be a number of things, it is different for each person.
To apply you need to submit your story via the site, you do need to include certain aspects of your story pertaining to:
I wrote my story out first in a word document and then copied/pasted it in the appropriate sections. I used the aforementioned topics as headings for each part of my story.
**Please note: the drop down box doesn't have NSW available to be selected, they are aware but have said to choose any state but write somewhere that you are from NSW. They are in the process of fixing this error up along with updating their site too.
If you have a stoma nurse who is amazing and deserves to be recognised, please nominate them too!
I do encourage everyone to apply, the program is a great way to not only share your story but to meet other members of the ostomy community. The awards are all about empowering and inspiring ostomates that there is still a life to be lived and enjoyed after surgery. I had a lovely night, which I will share in more detail in a blog post to come.
Thank you to Convatec and the judges for choosing me as the 2017 winner and I can't wait to see what is to come.
Sunday, July 29 2018
I know it has been a while since I have posted on the blog, I have been sharing daily posts and microblogging on my facebook and instagram pages, it has just been easier while I felt unwell.
As I write this, I am sitting in the lounge room with the blinds down and lights off so it is dark. I have had a bad migraine since 1am and my head has been hurting so much. But it isn't my only pain today, suffering with abdo/tumour pain (which has been the bane of my existance of late).
I feel of late, that all I seem to be doing is sleeping - which is essentially true.
My pain has been rather bad, and it is rather tiring, along with my thyroid levels being out, have all contributed towards my exhaustion and need for sleep. It's not that I want to sleep so much, or feel lazy, but I am trying to be a good patient and listening to my body that it needs rest.
The fatigue can be rather debilitating and interrupts so much of my routine and has made me feel not as productive as I would have liked to have been. I have so much to do, to plan and organise, but finding the time or energy to do so is hard. I am often needing to cancel plans last minute too.
I have been monitored by my doctors, palliative care team and of course Russ and Dusty, but there is talks of a hospitalisation out in Bellingen at the Palliative care unit to look at changing to a new pain medication. I am not ready to go to this new medication, I am waiting until I feel the current medication has been exhausted.
The need for a hospital stay with one on one monitoring is due to the events that unfolded in January when I switched pain medications and almost died, so I need to start on a low dose and work out what I need, once I am stable I can return home.
Another reason for my hesitation is that Bellingen is around half an hour from coffs, so 45-50 minutes to my house. This would mean I would be alone mostly as Russ works and is too far for him to visit, it would become 1.5hours just in journey alone, and after working a 10 hour work day it is too much for me to ask of Russ to visit me. There is a possibility he could stay in my room for the night if there isn't someone else needing the bed, then he can shower and head of early. But it would mean not seeing my little kitty for some time too, he struggles when I am not home.
I really would rather be in the private hospital in Coffs than be in Bellingen, but it is where the specialised care and doctors are, so the option isn't mine.
Until then, I am just managing my pain as required. It is hard for Russ seeing me in pain, it has taken its toll on him and our marriage, I have been retreating back to bed not long after he is home and dinner is finished. I feel like I am missing him deeply, but it is just more comfortable to be in bed than sitting up. I feel bad for him hurting.
I am doing the best I can and hope that my pain eases so I can enjoy some upcoming events such as heading to Brisbane and a local young women ostomates meet. Having a couple of events to look forward to is allowing me something to focus on, but has me excited too!
I am just taking life one day at a time and making the most out of good moments I find during the day.
Please know all the love and support you offer me, especially on difficult days, means so much.
Sunday, June 17 2018
Calling all young females (u/55) living on the Mid North Coast or Coffs Coast with a stoma, check out this exciting and new FREE event happening in August!
My stoma nurse has been excitedly organising this event and I was honoured to have been asked to design the flyer, but I was even more honoured to be asked to speak on the night as one of the speakers.
☞ The event is FREE and is open to all women with a stoma and under 55 from the area, if you're willing to travel you can come along, just make sure you RSVP.
☞ If you have any dietry requirements aside from the stoma, let the stoma nurses know and call 0266567804, that way everyone is catered to.
☞ The night is going to be a fun night with the chance to get to meet other young ostomates under 55's and the hopes of connecting each other to form friendships as ostomy life can be rather lonely for some.
☞ There will be a fun activity for all to join in and will also have reps from different ostomy companies there with samples or to speak more. Guest speakers will include Allied health professionals as well as myself.
☞ This event wouldn't be at all possible without the fundraising done by the Coffs Coast Crafty Crew (scrapbookers) in April 2016, as well as the hard work from the organising team of stoma nurses.
I am really looking forward to the night, and looking forward to meeting others from the area. Whether you're from Port, Grafton or in between this event is open to anyone who would like to come, has a stoma and is under 55 and a female.
Did I mention it is FREE and catered?
Can't wait and I will see you there!
Friday, June 15 2018
Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.
I felt rather relieved to have finally had the appointment, moreso for what came next.....
I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.
But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.
So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.
If after a fortnight I am happy with them I accept them and they are mine.
It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.
It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.
So I almost cried when I learned that I could be hearing in a matter of a fortnight.
I am hopeful and excited, I have needed this for so long.
I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.
So I am okay, I am just grateful for all the new possibilities coming my way.
I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.
So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.
Monday, May 14 2018
NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY
It is here!!! It is finally here, the time you've all been promised is here.....
Epic self care and self love package for one to be won by one of you!!
Firstly, thank you to all of our kind and generous businesses without whom this would not be as epic or love fuelled as it possible is.
To enter the competion:
You'll love their feeds!
✰Please Visit and like/follow the following businesses:
I am so excited to offer this, and remember it is only for a week only, so hurry!! Due to postage restrictions this prize is only available for Australian readers.
Sunday, May 13 2018
NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY
For as long as I have had this blog I had set myself two milestones I wanted to reach:
I know these might seem like small or insignificant goals, but to be honest when I first learned I was 21 had early stage bowel cancer and would require a permanent ileostomy for the rest of my life - I didn't know if it would be a blog worth following, because it wasn't sexy and appealling, so I worried if anyone would read my blog or engage with me or if they would judge me. I was worried I wouldn't be accepted and that I wouldn't help anyone. It is such a sensitive and private topic that I felt so vulnerable putting myself out there so openly.
All I had ever set out to do this blog was just to help at least one person, and I know in the past 5 years I have done that! AAAAAnd I found MY TRIBE of people who love and adore me too.
This week I also celebrated 5 years since my total colectomy and the moment I became an Ostomate for LIFE! I celebrated each of those extra days and minutes I have had with pure joy and gratitude, as much as my stoma changed my life it saved my life too.
My stoma has helped me to have these extra days and years, and my blog became an outlet for me to share my experiences and hope to empower and help others on their own stories.
I am so grateful to those who interact/engage with me on social media, many become friends or like family; they celebrate when I have a win, they share my sadness when I am in pain; they encourage and support me to live and celebrate life to the full - and I have.
So this giveaway is for YOU as my way of saying thanks.
I appreciate every comment, like, message and email and love all of the support, as I believe in the importance of saying thanks I am showing my gratitude with this HUGE giveaway for you.
The ultimate self care package for One!
✰1 x Pair of Multi Marble Delight Earrings - Gorgeous By Carly
Get ready to sparkle with these pretties! Made from premium acrylic with a glitter top with stunning rose Gold findings to make them super classy too. No two pairs are the same due to the placement of the acrylic, these babes are definitely OOAK!
✰1 x Ultimate Body Goodness Care Set from Sugorma
✰ 1 x Neck Wrap Heat or Cold in Boho Feathers - Chatterbox City
Designed to sit nicely on your neck and shoulders & sectioned into 8 segments so that you receive an even heat. Use this pack hand free so you can still get on with your daily activities while getting your much needed relief or relax back and wrap it around your ostomy bag for a great tummy relief.
✰ 1 x 'Hey Beautiful' Love Letter - TLL collective
♥ A reminder that YOU are Bright, Brilliant, Beautiful and Brave and most of all YOU are loved.
✰ 1 x 'More than words' book by Sophie Guidolin
Each page within the book details a beautifully hand-scripted quote to lift your spirits, change your mood and focus your goals.
Whether you're wanting to view all the 50 designs in this pack, or to purchase the pack yourself to print off as gifts when popped in frames, or to start filling your home or bedroom, office cubicle or even if you are studying and want to decorate your bedroom. The need for and use of these beautiful prints are endless.... and SO affordable too at 90% off RRP to buy all individually.
✰ 1 x Pink and mint green car diffuser 'french vanilla' - Salty Fox Co
What makes these beauties so versatile is that they aren't limited to being used just in the car! I plan on adding some to our walk in robe to help keep the room smelling fresh, could add to the bathroom or toilet, or sneakily throw in your teenage boy's room. But no matter what, you will be left feeling serene and smelling pretty too.
✰ 1 x 2 pack of Notebooks and a set of Greeting Cards - The Scenic Route
♥ Perfect for all occasions, cards are blank Inside, each comes with recycled brown craft enveloped, and individually packed in a biodegradable clear cellophane pouch bound by a brown kraft paper bellyband.
♥ Made with love in Australia and printed on 100% recycled paper using vegetable based eco friendly inks.
♥ Splash resistant cello glazed cover, 48 pages and finished with pink saddle sewn binding, perfect handbag size for all of your important notes and daydreams!
♥ Made with love in Australia and printed on 100% recycled paper using vegetable based inks.
✰ 1 x Bath tea soak + candle + clay mask set - Kiss and Co
Relax and unwind with our mini pamper pack. Including:
Talk about an epic prize pack to win!!!
Are you excited? I know I am!!!
Saturday, April 21 2018
Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.
I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".
Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....
So surely a duress warning is warranted after all, due to the amount of population exposed?
When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life.
Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!
Anticipatory Grief: The grief you experience without realising there's a name for it!
I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.
But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.
Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.
It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.
But it really made me look long and hard at my own life.
I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.
But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
There have been other moments I experienced Anticipatory Grief without realising it:
I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.
★But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.
I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.
I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again.
Noticing anticipatory grief in those around me:
Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.
Ways or some examples have been:
Time for change, let's talk about Anticipatory Grief to Normalise it:
For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.
I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.
Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.
But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.
Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.
Wednesday, April 18 2018
Stoma Nurses are the heroes of the ostomy community, well I know I wouldn't have made the last 5 years without my wonderful nurse by my side. So it was why it was an absolute honour for me to have been asked by the WOCN society to contribute to a tribute video they were collating for WOCN week, to say thanks for our nurses.
It was even more of an honour as it was to mark 50 years of WOCN contribution, and I felt in someway that it was a way for me to leave a mark in the world to say thanks to my Nurse and all the nurses out there. I am big on saying thanks and ensuring that I say thanks for those I love or those who have made an impact on my life.
This week 15th-21st April, is the WOCN appreciation week. WOCN stands for Wound Ostomy Continence Nursing, in Australia this is a Stoma Nurse who is also a Stoma and Continence Nurse.
If you wanted to see the tribute video, here it is. If it doesn't load below the link is here.
Thank you to all of the nurses for all that they do to help ostomates navigate life with an ostomy more smoothly. Most importantly, thank you for having our backs.
Congratulations to the WOCN society on celebrating 50 years of service! And thank you for everything!
Sunday, February 25 2018
Did you know: there is an International Day for just about everything!
Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.
Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!
Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.
We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.
Russ and Dusty have their own special bond and routines, just as I have with Dusty.
I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better!
Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long!
But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.
Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.
Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.
I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!
Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.
Dusty is famous:
So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!
I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.
He has THE BEST facial expressions!
You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook.
I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.
The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!
Monday, February 12 2018
Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.
I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week.
Let me start by sharing (an ironic) quote from the episode:
The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.
Just an idea?
Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.
Here are what other ostomates and advocates said about the episode too:
No You Cantcer @NoYouCantcer
Here are some ostomates who inspire me and others:
But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.
I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.
While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.
I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!
✰Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
✰Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
✰Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
✰Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:
"Anything that has the power to save a life can be nothing but beautiful!"
For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog
✰Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
✰Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.
This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.
My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.
As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.
Friday, February 09 2018
I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.
Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.
Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.
So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.
As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.
I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.
Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.
If you want to read the interview on OstomyConnection the link is here.
5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.
P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too.
Wednesday, February 07 2018
Poor Russ has been a little stressed and stretched these past couple of weeks. Poor guy is feeling buggered, which is no wonder with all the excitement going on here at our humble abode.
I joked to him yesterday, that it looks like he has greyed more in the past month.
Time spent with cats is never wasted:
While I spent my first night in hospital (see previous post to read), Dusty managed to somehow get outside and got into it with one of the neighbour's cats who is forever at our place tormenting Dusty.
Dusty, naturally, was only protecting his domain and his house... but while he thinks of himself as this almighty alpha (who dreams of becoming a firece lion when he is older), really just is an egotistical testosterone fuelled teenager who is all talk and can't fight.
We got a quote recently to get the "crimsafe" mesh screening on the doors as he keeps charging through the flimsy flyscreens to get outside. But at $3k, it just isn't something that we can readily organise or budget for just yet.
The night in question was rather hot, Russ didn't want to unnecessarily use the air con if he could avoid it, so he even went to all the extra measures of making a barricade using MDF ply board so that he couldn't get outside.
Yet, somehow he did.
Not only did he get outside, but he managed to get back inside climbing back over the board.
Russ found him the next morning curled up in the laundry crying and whimpering in pain, he wouldn't even let Russ touch him or anything. Russ said he was curled up on my blankets and towels in the laundry, so he might have been wanting to feel comforted by me since I wasn't home, but Russ said he spent most of the time in there sleeping while I was away... Dusty doesn't cope well when I go to hospital.
So Russ only realised Dusty had gotten outside because he was filthy and he had to give him a bath, but he also noticed he had scratches and bite marks on his back/sides.
So Russ wrapped him up in one of my towels and put him back in the laundry and headed off to work.
This was the day where I nearly died, had my seizures and was a bit of a worry.
I remember around 7.30pm Russ said now that he knew I was okay, he needed to get home to Dusty as he was worried about him too.
So fast forward a few days and Dusty started eating again, Russ said he was a bit depressed which could have been from needing and missing me but also because he was in pain and he went off his food but started eating again a couple of days later. Then gradually over the days to follow he would slowly get back to his old self.
I came home from hospital last Friday, I got out of the car and hadn't made it to the front door yet when Dusty was at the front door meowing as if he was excited to see me home. Russ said that was the happiest he has seen him in that time.
Every night since his first night with us, he always would sleep in our bed cuddled up to me of a night. So when I am not home and in hospital he doesn't come in our room to sleep and usually sleeps on a lounge or on a cat bed he has hidden under the coffee table. So he slept there and in the laundry.
But my first night back home he jumped up on the bed and cuddled up to me and was purring so much, it really made me feel a lot happier to know that he was feeling safe and well again.
Since then he has been acting more and more like his usual self, today he ran around chasing flies or ghosts, he even jumped up to the top window in the dining room (where he looks out over his kingdom) and has been enjoying having me home.
He hasn't let me out of his sight and even will lay at the door looking like a Sphynx guarding the room, being home with Russ and Dusty certainly has been the best medicine for me, so hoping it is the same for him with me being home. But it broke my heart knowing that Dusty needed me but I wasn't here to console and comfort him, I feel guilty.
Dusty's visit to the vet's today:
When I cuddled him the first night I was home I noticed he had a couple of bumps along his back near his spine, I was worried and concerned, by Monday these had grown bigger. So I called the vet and asked them for a consult today (Russ had the day off).
Russ and Dusty trotted off to the vet today and he said Dusty had a temp and that the bumps were abscesses because of the other cat he fought with likely had something on it's claw or teeth.
He has a course of antibiotics to take twice a day and to see if the infection and abscesses clear up, if not he will need to have surgery to remove and drain these. But the vet said that they look close to bursting any day now, so fingers crossed!
So it's been a pretty big and exhausting couple of weeks here at our household, just hoping that Dusty can quickly understand he isn't an almighty Lion and he is just a precious little cuddly bear. Hoping this phase passes soon, because we can't quite fit $3k just for new thicker screened doors into our budget to appease his testosterone alpha male ego character he has going lately.... I thought having him desexed he wouldn't be so, well, male?
I am proud that he loves our house enough to feel he has to protect it, but he is just far too precious and is really just a soft cuddly pretty boy!
But the best part of being home is feeling like he needs me and being spoiled with all of his cuddles. I am just grateful he is okay and nothing too major, but I don't know what I would do if anything happened to him.
Tell me, did your cat ever settle down as he got older?
Or any old wive's tales you know of that have cat's leaving your property alone?
P.S Did you know Dusty shares his own antics on Instagram and fb search @Fabmewlous_Dusty to follow
Sunday, February 04 2018
If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....
Yes, it's that huge!
I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).
I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.
I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.
I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.
Back when I started my blog 5 years ago I said to myself:
So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.
I said to Russ:
I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.
5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.
I was scared
I was alone
But I took a leap of faith and courageously started my blog.
I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.
I was full of self doubt.
It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.
Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.
I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.
So with hesitation I hit publish on that first post and was surprised by what followed.
I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.
I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.
I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.
My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.
My blog wouldn't be what it is without you guys, my tribe and cheer squad
Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.
Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten.
I want to thank you and show you how much I appreciate you.
I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.
What an Ostomistically amazing time it is to be alive!
I am grateful so much for you all and if I have helped you in any way please comment below.
Friday, January 19 2018
I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors.
I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.
It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.
It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.
Don't get me wrong, I like when people visit but only if 2 conditions are met:
There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.
Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.
I NEED notice when it comes to having visitors for a few reasons.
#1. I sleep a lot:
#2. My stoma leaks a lot:
#3. I often sleep starkers:
#4. I am often in pain and bedridden:
On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.
#5. I can't just simply duck out to the shops:
If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.
#6. I need a chance to cancel:
#7. Our house mightn't be visitor friendly:
I could go on about scenarios, there is so many more.
But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us.
I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.
If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ.
But if Russ says "today isn't the best day she isn't well" please respect his call.
Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.
Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry
As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.
Sunday, January 14 2018
Russ, as of 4pm this afternoon, is off work for 10 days.
Cue the party blowers!
I noticed he was burning out, it is hard working full time and being a primary carer too, it can understandably be a bit overwhelming and exhausting at times.
It can feel like you're burning the candle at both ends too.
In 8 years of being together I have gotten good at recognising what Russ needs even before he says so himself.
So I realised around Christmas he was tired, he was more snappy and irritable than usual and he was just grumpy. I told him that he should find out the earliest he can take holidays and take them, as I was worried about him. Our GP agreed it was good idea for him too.
So he finished this afternoon and heads back Australia day or just before.
I don't want to overwhelm Russ with a jam packed daily itinerary, he doesn't do well with plans as the fallout of when they don't happen can be hard, so I am choosing to do things to spend time together but shouldn't be too overwhelming either. We don't have a holiday planned or anything but there are 5 things we want to try and do:
#1. Go for a couple of nice walks together:
#2. Go to Bunnings:
#3. Do some house stuff:
After all, happy wife happy life they say.
I have also just started doing the Barefoot Investor, so hoping to work on whipping ourselves into financial shape this year, so probably try and sell a bunch of stuff to find the $2k needed for one of the steps. I have A LOT of work to do to find this amount so I can begin.
#4. Do our belated Xmas:
#5. Go Swimming:
So it is safe to say I am feeling pretty excited for the next couple of weeks, I like days Russ has off and we can hang out - even if it is just playing board games in bed. Days I am in bed it is a comfort to know he is close by. Also means if there is an hour or two I can manage getting out of the house we can do stuff, those are my best parts of the week.
Here is to quality Talya and Russ time - Can you tell I am excited?
Friday, January 12 2018
I know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.
It is hard being on one income, I know it is overwhelming for Russ too.
So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.
This really scares me.
Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.
Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.
I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.
That is a fight for another day.
Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.
It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.
We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.
Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?
A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.
So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?
I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!
We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.
As always, thank you for listening and wish me luck as I tackle this mammoth task!
What goals are you hoping to tackle this year?
Friday, January 12 2018
I was scrolling through my Facebook 'on this day' memories when a post from this day, 5 years ago, came up.
The post was:
You see, I had a pretty MASSIVE and life changing decision that needed to be made.
I was told not long before Xmas 2012, that I had early signs of bowel cancer and that I needed to have a surgery called a total colectomy with a permanent (end) ileostomy created.
I was so scared, I was so alone and I didn't know of ANY other people with an ileostomy let alone a young person with one.
I was 21, why should I have known anyone, afterall I was ignorant and thought just older people lived with stoma bags, it was hard to fathom a young person living with one.
I ignorantly made this association as I presumed that people had a stoma at the end of their life and that their lives are essentially over.
So when I was told that I would be needing one at 21, for the rest of my life, I was really freaking out.
I tried to search for blogs about young people with an ostomy and couldn't find anyone. Social media wasn't what it is today, there was Instagram but it hadn't taken off, but there was still so much stigma around living with an ostomy and the social stigma too for that matter, that not many were sharing their lives publicly.
The media wasn't helping much when it came to sharing stories about people with a stoma either. They published such negative, fear mongering articles that had people, like me, perceiving it as death sentance or that it was THE worst thing imaginable.
But my surgeon said this to me :
I met with my stoma nurse, counsellors and surgeon a couple of times to help me process the surgery. I hadn't told any of my friends or family, I didn't know how to bring it up, I knew they would have questions that I wasn't ready to answer, but I was worried about being judged.... so I decided to wait until I had to tell them, which was the week before surgery. I had so much to process as it was I just didn't need anyone else weighing in, they were pissed understandably, but they were also upset that I was trying to process such a huge thing on my own.
I had told Russ though and he had been coming to my appointments with me, as it was impacting him too. At the time I gave him the option to leave me, told him that I wouldn't hold it against him if he did as it wasn't what he signed up for, he told me to stop being ridiculous and it would take a lot more than that to stop loving me.
I couldn't have gotten through all of this and life to come, without Russ though.
He came to my appointments and asked my surgeons or stoma nurse questions, he even asked if when they teach me how to look after my stoma that they show him too so that he knew how to help. I think it was at that point I fell even more in love with him, which I didn't think was possible.
Russ said to me that it was my decision to have the surgery or not, but if it meant that this could be helping me to live as long as I could that he would appreciate me having the surgery.
So 5 years on, this is a letter I wished I could tell my scared 21-year-old self, I don't even recognise that part of me anymore I feel like this was a massive turning point in my life and I grew up A LOT in the years to follow.
Letter To My 21-Year-Old Self:
I know you have a lot that you’re dealing with right now and I know that you’re doing the best that you can under the circumstances. You are facing a life-defining decision right now, I can tell you this because I have watched you live through this.
Yes it changed your life but it saved it too.
Do you know how much pain you’re in right now and every time you go to the toilet? You probably won’t believe me when I say this, but you won’t be in agony multiple times a day. You won't even be needing to spend most of your day on the toilet either.
Do you know how you don’t leave the house, go out for dinner or stay over at someone’s house unless you know that a toilet is accessible and close by? Well, you won’t have to worry as much. You won’t be needing to quickly dash to the toilet every time you eat.
Do you know how you lost your enjoyment of food because of the above comments? You will find you can eat all your favourite and missed foods, given there are things you can’t eat anymore, but you will find you will learn to love and appreciate food again.
I won’t lie, there will be some pretty difficult times ahead, not only will surgery and the recovery be long and hard but it will be painful.
You will adapt to stoma life, but it will take time, so be patient with the process.
There will be times where shit literally will happen, it is to be expected, but trust me - you will get used to it. You will sometimes wake covered in shit, so just remember to empty your bag throughout the night and also invest in waterproof mattress protectors.
Sometimes leaks happen, it isn’t your fault, but always carry a spare set of supplies everywhere you go just in case. There will be a time where you’ll be caught out, it will be embarrassing and it will serve as a learning curve.
I know you’re apprehensive right now about surgery, but your stoma will serve to give you extra time… everyday is a gift and not a given right, learn to appreciate each day you wake up and all of the moments you have.
You don’t need to worry about Russ or your marriage, he will be there for you every step of the way. He will surprise you at how calm and collected he is even when you’re flustered and freaking out and covered in shit, even if it is in the middle of the night. He won’t mind helping with your bag changes or leaks, you just have to ask him.
He loves you for you and your stoma will soon be a part of you.
You will lose friends, because they don’t understand - it will hurt but don’t dwell too much on those who aren’t there for you and appreciate and be grateful to those who are. You will make some great friendships over the coming years too, you'll find people who embrace you for the wonderful person you are and won't be worried that you have a stoma.
Just remember what dad used to say to you and find comfort in his words offered.
The next 5 years will be incredibly tough and this is just the start of the rollercoaster ride known as life, this will be the first of many primary cancer diagnosis’ and the start of many surgeries.
Know your limits but also recognise when you need to ask for help too. Put your stoicism aside and ask people to help you, most are wanting to help they just are waiting for you to ask.
There’ll be times where you easily wished you could pick up the phone and call dad, but there’ll be times where you will draw from his presence and he will be there to guide you. I am sure he will be proud of you.
Learn to pick your battles, know that some just aren’t worth the stress. You will come to learn to try and let everything go, everyone will always be having their own opinion or force their mindset onto you. Just stay true to yourself. Know your worth. Know that you aren’t what they think of you.
It will be hard on your mental health throughout times over these next 5 years, there will be times where you spiral and it is important to always recognise when you need help. Find what drives your creativity, focus on writing or creating, find ways to give yourself purpose in your day.
You are about to start a blog, you are worried about putting all this out there publicly and worried about how other’s perceive you. But by doing this you are going to be helping so many, you will help save lives, you will help nurses in how they help support young people with a stoma, you’ll be nominated for awards, you will even start your own magazine for young people with a stoma and will even help others to feel less alone.
You’ll start your blog because you’re finding as a 21-year-old female that there isn’t much info out there at the moment when it comes to young people with a stoma and a blog, you don’t know what life will be like going forward, but you will feel that if you share it as you go that maybe you’ll help others who are feeling alone or worried too. You will meet other young ostomates too.
You’ll even be invited to speak about your time as a young ostomate.
But you will also get to do some fun stuff too, like catch the train to Adelaide, go to P!nk’s 2013 concert, Meet the Dixie Chicks and see them in concert in 2017, finally get to experience and see Darling Harbour, Go to Melbourne and accidentally stumble across the Offspring hospital, go swimming and do water aerobics, and do some bucket listing too. You'll finally get a tattoo too!
You and Russ will realise your house dreams in 2015 and will build a house, you’ll also have a very adorable and fun kitten who will make your days fun and full of love.
Then in 2016 you’ll need surgery to remove one of your tumours which will mean losing your stoma, your stoma will now be retracted and sit under your skin. It will leak a lot, it will be hard at times to lose all hope knowing the good stoma you had prior, but you will get through it. You will get used to daily leaks and waking up with a leak, it will affect your mood and what you do but you’ll be relatively okay.
In 2016 you will also enter palliative care, they will offer you a wheelchair - don’t decline out of pride or feeling like you aren’t worthy of it. You will learn to love your wheelchair and embrace it, just like you have your stoma.
So while you have a huge decision to make right now, I can tell you this now that you will be better off having the surgery. You will be okay, your marriage will be fine, you will love life and not fear it.
Don’t fear asking your stoma nurse for help, even if you feel it is a silly question, she will be one of your greatest supports. She has probably heard it all, you really couldn't do this without her....
But you have got this, your life will be changed but you will cope and adapt.... just breathe!
Write that bucket list now, start to see and do as much as you can and don’t keep saying there’ll be plenty of time, go travel when you’re able to and take lots of photos and always tell those you hold dear you love them and appreciate them.
P.S I just wanted to say thank you to each and every person who reads my posts, comments on social media or on here or has emailed me over these 5 years supporting my blog. Cannot believe it is 5 years later already!
Friday, January 12 2018
NB: This post contains talk about poop
You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.
There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.
Then there was me, not only were the clothes I was wearing drenched, but so was I.
You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.
So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.
I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.
I know what you're thinking, but WHHHHHHYYYYYY?
Well, it was simple....
I was scared.
I have never, in 5 years, showered without a bag on.
I know many do and many have many times, but I was always hesitant.
One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.
So I never did try with my old stoma.
Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.
But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.
So back to my story.
I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.
Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".
Except yesterday I really had no energy and said "what the heck".
I took my bag off and disposed of it, that way I could clean my stomach better and easier.
I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.
I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.
Now I know next time when I should just jump in the shower and hose off that it will be okay, that I won't die because my soap chemicals burned an ulcer through my small bowel or that showering with my bag off won't damage my skin if anything it helped it.
Thankfully it isn't everyday that I wake up with a leak like this, some days it is more managable, but it is uncommon to have a day where I don't wake with a leak. There have been a couple of times when a leak like this happened during the day when I was out (once at a wedding and once at a restaurant), so in those moments I can't just hose myself off.
Have you tried showering without your bag? Were there worries you had too?
I know my worries might have seemed over the top, but I live with bad anxiety and that anxiety rules a large part of my life and very quickly my mind can esculate a situation.
I am used to bag leaks now, but it took a while to not be flustered. At first I would cry every time my stoma leaked and I would be so flustured and overwhelmed, so much that my husband would step in and help me. He always was the calm one. I used to play songs or music when I did a bag change to help distract me. When I got my new stoma and it leaked almost hourly I basically had an ipad set up and would watch something funny to distract me, the steps involved in doing a bag change took almost an hour each time and it just helped the time to pass by being distracted.
Now when it leaks, I am just so focussed on getting a bag back on as quick as I can because sometimes it can take a long time to stop being active long enough to whack the bag on.
If you have a frequent leaking stoma, welcome to the club.
But be sure to see your stoma nurse about why you have a leak and what you can do to prevent it, I know not all leaks can be prevented but sometimes there could be a new or better product for you to try.
With my first stoma I was have regular leaks every few days, I realised that my output was getting under my base plate, so my STN gave me rings/seals to try and it really helped improve the longevity of my bags and I was able to go 7-10 days between changes and my skin was still good... I do miss my old stoma, and it is important to note what worked for me in that situation might not work the same for you.
Of course there isn't anything to be done about this current stoma, and it could be the same for you, but sometimes your nurse or surgeon can help.
Monday, January 08 2018
I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.
Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.
So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).
I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.
#1. Self Care:
I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked!
Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show.
#2. To read more:
So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.
Let's do this!
#3. To say No more:
In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.
#4. Reducing waste:
One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself.
So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.
I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.
So if I can make changes in other areas of my life, it hopefully makes up for it somehow?
#5. See the snow:
I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.
I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.
It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.
If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.
#6. Learn something new:
I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.
#7. Write that damn book:
#8. Write a blog post a week:
#9. Write a journal:
All of these writing cues would be kind of life self care I guess, since it is cathartic and all.
#10. Regularly meet with a counsellor:
I guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.
#12. Go Glamping:
#13. Have a holiday:
#14. Explore the Coast:
We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!
I am just really hoping to see/experience new places this year.
#15. Renew our vows:
I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.
#16. Get back on our feet financially:
We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.
I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.
Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.
#17. See a waterfall:
#18. Try to get my pain under control:
I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.
☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟
I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.
My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!
Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.
To be fair, his list was most of what I do anyway which was:
Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.
I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.
Thank you for reading, feel free to share something you hope to do this year in the comments below:
Thursday, December 14 2017
If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.
NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.
So in this Part 2, I will be sharing tips to help you be more prepared for the weekend
But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.
I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.
I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.
Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.
Part 2: Being prepared and tips to surviving the heatwave
I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.
Tip #1: Never leave kids or pets alone in a car
Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too.
I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.
A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.
What to do if you see a child or pet in the car?
You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.
For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.
Tip #2: Have plenty of water
You should drink two to three litres of water a day even if you don't feel thirsty.
Tip #3: Have electrolyte replacement on hand
Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.
Tip #4: Stay cool
If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.
You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.
A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.
Tip #5: Keep plenty of drinks in the fridge prepared
Tip #6: Have ice packs or blocks in the freezer
Tip #7: Keep blinds drawn
Tip #8: Wear light summery clothing
Tip #9: Be sun smart and sun safe
Tip #10: Reapply sunscreen often
Tip #11: Don't lie in the sun exposed
Tip #12: in case of a blackout
Tip #13: Open the house at night or evening if a cool change is forecast
Tip #14: Pets or wildlife
Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.
Tip #15: Keep your body cool but not freezing
Tip #16: Check in on those at risk
Tip #17: Watermelon
Tip #18: Foods
Tip #19: Wearing a stoma cover
Tip #20: Mashmallows
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I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.
Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.
More Links through my research:
If you have another tip, be sure to let me know in the comments below. To read part 1, click here
Thursday, December 14 2017
NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.
Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.
But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.
So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.
..... 14 days in to December, this is going to be a long hot Summer!
Part 1: Knowing your risk and what to do
I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.
Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.
How does having an ostomy put me at risk during a heatwave?
Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.
With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.
It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.
So what is dehydration and what are the signs to look out for?
NSW health says the symptoms/signs of dehydration to look out for are:
So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
So what are heat cramps and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice:
So what is heat exhaustion and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
So what is heat stroke and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.
Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!
Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.
Sunday, December 10 2017
You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.
But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.
so #keepcalm, don't panic - you've got this!
I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.
As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.
So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....
My 10 top tips to getting ready for guests at Xmas time:
#1. Ensure there is plenty of toilet paper:
#2. Knowing the meals or menu ahead of time:
Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!
#3. Prepare things before Xmas day:
#4. Ensure your guests have easy access to items:
#5. Have plenty of towels available:
#6. Have empty and clean bins near all toilets:
#8. It's okay to need 'me time' and step away for a breather
#9. Have a fan or cooling option available, especially if it is summer
bonus tip #11. Have plenty for your guests to do
So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.
Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.
p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments
Monday, November 27 2017
I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!
I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.
I also feel mega proud right now!
I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.
If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.
I am really hoping you love this issue, there are 2 giveaways too.
In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.
So sit back with a cuppa and have a flip through.
I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.
Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.
Anyway, have a wonderful night and I will anxiously await your feedback.
Saturday, November 11 2017
Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.
I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.
I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.
This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.
As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom.
Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.
I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.
So I have a wheelchair and I am not ashamed of it.
My wheelchair has given my life and ability to enjoy and love life back.
But people, even family, recently said that they thought I had a wheelchair because I am lazy.
Yes I am overweight, but that isn't why I need a wheelchair.
I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.
But hey I am just lazy arent I?
I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.
But not all disabilities are visible.
AND a disability isn't just someone using a wheelchair.
If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.
You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.
So before you think you HAVE to say something, remember the acronym THINK:
It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.
In your actions just stop and think.... is this necessary? What will it achieve?
But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?
He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.
Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.
One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes.
Next time you want to shame someone, stop and think first.
If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.
There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.
The world needs more love and they say if we want to create change to start at home first.
Saturday, November 11 2017
CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body
If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.
Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.
Dusty has filled a void that I have had for far too long, and I know Russ will say the same.
Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.
However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.
Our Hopes for a family:
Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.
We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.
Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene.
My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.
Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.
In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.
I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.
So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.
In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.
Which brings us to 12 months ago:
We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.
Russ was completley smitten and in love.
It filled my heart with so much joy seeing the bond they've shared over the past year.
Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him.
It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.
I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.
Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.
He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.
I now feel like we are a family and we have Dusty to thank for completing our lives.
I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.
I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.
Friday, November 03 2017
Recently, I was asked to be the Australian writer and contributor to OstomyConnection.com which is a site dedicated to being a hub on all aspects of ostomy life.
I was asked to write an article on:
Despite there being approximately 44,000 Australians living with an ostomy, it can at times feel frighteningly lonely and friendless, especially if you live in remote or rural areas of Australia (like myself).
When I was 21 (in 2012), I was told that I needed a permanent ileostomy due to early stages of bowel cancer. I didn’t know anyone to help me understand ostomy life, especially my concerns as a young person (moreso, a young female) and navigating/living a fulfilling life. So I sought out a local stoma support group but at the time there was a 40 year age gap with the nearest age to mine, which made me feel more alone and unable to relate to them or their lives.
So .... I turned to the internet - particularly social media - in a desperate search for proof that a life can still be lived with an ostomy. At the time there weren’t many bloggers or people publicly sharing their life with a stoma, so it was hard back then to find “your people” or someone who just got you and could completely empathise with you.
Today, Instagram has a community of over 800 million users!
That is 800 million chances to find your community that you want to connect with or to be inspired by…. After all, a friendship is born at the moment that one person says to the other “What! You too? I thought I was the only one.”
One of the perks of social media is the ability to connect people and to help them feel less alone and isolated.
Whilst I know that there are thousands of Aussie Ostomates on Instagram, here are my top pick of 20 fellow Aussies that I know you’ll not only find relatable and awe-inspiring through the lives they lead, but that you’ll also love. Each contribute vastly to ostomy life.
I look forward to bringing you many more articles.
You can read the post here https://ostomyconnection.com/news-and-culture/20-ostomates-in-australia-to-connect-with-on-instagram
Tuesday, October 31 2017
Russ The Ostomistic Husband and I just got home from a last minute trip away to Newcastle (2 hrs north of Sydney), which is approx 6 hours south from here if you get a good run of traffic, which thankfully it was a good trip. But.... although it has been refreshing for my soul and spirits, I am absolutley buggered and finding even 2 hours in the car to be taxing on my body (let alone 6 hours).
Regardless of how much pain I am in right now, it was still worth the quality time spent with Russ yesterday.
Russ needed to go down for training for work, as he had to be there at 9am this morning I suggested we head down and stay the night to avoid him leaving at 3am and driving all day then working and driving all afternoon home... being a P plater I have total faith in his driving but I just thought it is a long way to go on his own, so I tagged along too.
It was Russ' days off work on Sunday and Monday anyway, so we thought we might as well head down Sunday to get the driving done with so we could spend together all day yesterday, which was exactly what we both needed.
There were things in Newcastle that we wanted to do and were on our bucket list (we do hope to come down next year to do part #2), while we didn't get to experiencing everything we still had fun - he always knows how to make me laugh.
Russ thanked me for yesterday (while we were at the hotel last night and again today on the journey home): he said it was nice to just have a day where we could just spend time together without the unfriendly reminders of our reality or our lives back home, that for one day, we were just a normal married couple madly in love and hanging out.
There is a hotel I have stayed in before that is called The Lucky Hotel, it is this boutique hotel on top of a pub, but it is sooo luxe. Think marble tiles in the bathroom, stone vanity, nice roomy shower... and each room has a different quote about luck. They've won all of these awards and despite us being only on the floor above the pub we couldn't hear anything - there was even a wedding on too!
Did I mention it is totes affordable? It was $159 and $179 for our stay, compared to another hotel we were looking at which was around $300 a night by the time you added in brekky and valet parking. We essentially could spend 2 nights at the hotel instead of the 1 we had budgeted for at the fancier hotel.
It was the only reason we could afford 2 nights away last minute.
So we left the hotel and headed to brunch, there is this Star Wars themed restaurant 'The Empire Coffee Co' which we had wanted to go to for a while now, Russ looked like a kid in a candy store! He was taking selfies with the lifesized statues and was putting nerdy snapchats up about star wars and coffee. I knew he would love the cafe. The food was delicious too!
We had planned after brunch to go for a nice long stroll up the wharf and around the harbour, even going to explore the headland too. But walking from the car to the cafe wasn't very pleasant, it was 35'C and very windy with a dry hot heat.
So we decided to postpone the walk until part 2 of our Newcastle bucketlisting trip next year once the weather cooled down and instead headed to Kotara shopping centre to enjoy the aircon.
We have both been wanting to see Thor: Ragnarok and found they had a Gold Class deal for extra $5 above a normal ticket we could sit in the comfy recliners and enjoy the movie reclined. This was the second time I experienced Gold Class, the first was earlier this year in March when we saw Beauty and the Beast. I do like putting my feet up, they were incredibly sore and puffy by that point and the heat wasn't helping, so it helped a lot to have some relief.
We don't have a Gold Class cinema close by, or one that I can go and enjoy in my wheelchair, so the movies is something I can only do when we go to the bigger cities and it feels like a reward somehow for good behaviour, so we don't get much of a chance to go to the movies together (on a date) so we love when we can. I do wish it were closer, I am excited for all the movies coming out I would like to see them as they are in the cinemas not when they're available on DVD. But, at least it is a lovely luxury to enjoy when we go away.
The movie was really good, there is a lot of humour in it which is unexpexted for an action movie, I quite liked it. Who am I kidding, how could you not enjoy Thor without a shirt on amiright?
I stopped at the Christmas trees that were all lit up and looked beautiful. I love Christmas and I love going places and admiring their trees, if I could manage to put the tree up on my own I would. I just feel so happy this time of year, it feels a little bit of magic is in the air.
Next on our agenda was the most excitement I had felt in a long time!
... I got to hold a $183k pink Argyll Diamond in one hand and a $93k pink Argyll diamond in the other! My heart was racing and Russ said I had the biggest grin on my face!
I have had it on my bucket-list to see an Argyll pink diamond, thinking in order to see this rare and exquisite gem I would need to head over to WA to the Kimberley region and knowing that travel that far is highly unlikely (when I struggle making it 6-8 hours) that I wouldn't get to see one.
So... imagine my delight when I see this sign saying "exclusively for today only we have the Argyll Pink diamonds in store".
I squealed with delight and Russ wheeled me in to the store.
I was even more excited when I got to try on and hold the jewellery! .... and then holding the precious diamonds was unreal and I am even smiling right now just something I had always wanted to see for myself. I wasn't prepared for it to be in Newcastle.
When I heard in 2011 that the WA mine was shutting in 2020 and that there wouldn't be anymore of these precious diamonds I always said if I won lotto I would buy myself something as an investment as the price will increase after 2020... the WA mine produces 90% of the worlds total Pink Diamonds!
I am still working on my million dollar idea, but the sparkle on the ring was stunning. The ring I admired was worth around $43k, the earrings were $60k, then there were the gems on their own.
It was just a good day yesterday, just Russ and I spending quality time together and yesterday I felt my spirits were more energised (even though my body is tired) it was nice feeling excited again. I do find when I can find the chance to live and enjoy life, I feel happiness and have adrenalin... living life is my own version of thrill seeking in a weird but magical way.
Friday, October 27 2017
In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!
Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.
We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.
This isn't the first issue with the bank this year.
They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.
THEN....☟ ☟ ☟ ☟
We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.
THEN...☟ ☟ ☟ ☟
The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October
THEN... ☟ ☟ ☟ ☟
On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."
I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.
I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.
THEN...☟ ☟ ☟ ☟
The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."
The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".
I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.
I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.
THEN... I received this email today☟ ☟ ☟ ☟
To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."
To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".
Uhhhhh, how are you not judging me?
You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.
Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.
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I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.
If I win lotto tomorrow it would be 21 million reasons to not bank with them!
But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.
I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.
I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.
I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.
Wednesday, October 04 2017
“Be the change you wish to see in the world”
We all know that at some point our lives will end, but what we do in our life and how we live could be a legacy that we are leaving that would continue to live on well after we have died.
It is hard at times knowing that my end is coming, given my terminal prognosis and that I am living with the knowledge that I could have 6-12months. I do know that a year ago I didn't think I would still be here, but I am. So I am making the most of every single day.
However, leaving a legacy is at the forefront of my mind.
Everyday I wonder: "will I be forgotten?"
I have so many thoughts racing through my mind every minute of the day, these are just some.
One thing that I worry though is if my life meant anything or if I mattered... it might sound like a strange thing to think about or it might sound like a self-centred narcissistic thing, but it is hard somedays wondering "why me?".
So leaving a legacy and living a life that I am truly proud of is something of importance to me
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One thing that I have known and believed since I was a teenager was that I had a purpose in life and that was: "to make a difference or to change one person's life", so I have tried to live life with this desire to help behind every action - including my blog and magazine.
I was pretty excited to have been asked by Share the Dignity to write about legacies and living a life with a purpose. This is a piece I offered up as a volunteer contribution (I was not paid or incentivised in any way), this is a charity I have been passionate about supporting for the last couple of years and one that I know how important/needed their work is.
If you would like to read my article click here. (Feel free to leave a comment if it has helped you or if you liked it)
Share the Dignity have their annual It's in the bag campaign coming up where people are asked to donate a handbag or backpack that is in good condition and fill it with items such as pads, tampons, toiletries and more. To learn more click here...
Being a Volunteer, despite being terminally ill:
Last year I did two backpacks for teenage girls and filled with items I had collected since the Xmas prior. To find out about how I put together 2 bags on a budget, click here.
I decided to sign up as a volunteer and collect the bags and deliver to the respective charities in the area. At one point I had over 300 handbags in my house. Two guest bedrooms were chock-a-block full of handbags and backpacks and there were a trail from the front door leading through the house!
It was an incredible experience and very overwhelming, only that I struggled with energy and pain and couldn't carry much so Russ stepped up for me and helped to deliver everything. Russ also helped me to check each bag for all the essentials and make sure that each bag had pads etc.
I was pretty proud of the work from our community.
Russ and I were delivering bags to a youth refuge and the owner/manager was in tears. One of the girls came out and helped Russ and I carry the bags and she said: " Thank you for doing this, you have no idea how much it means to me to know that strangers do care, that someone believes in me".
Another charity we were delivering to (was our 2nd delivery there that day as the car only fits so many bags) came running out of the charity as she had just received her bag and she hugged me and was crying and said "this were the best gift she had ever received".
I am so happy that an incredible organisation that is Share the Dignity exists, I wish I could have done more to help but I donate pads when I can to their April and August drives and the #itsinthebag. I love that Russ got involved and was a champ in helping me last year, sadly I am not in good enough health to volunteer for a second year but I am trying my best to get a bag together when I can.
I know there were times in my life where pads were a luxury and it meant going without food, it is no exaggeration at all, I am not ashamed of that point in my life I was simply trying my best, but do consider in your next grocery shop to grab a packet of pads/tampons and keep aside for the #itsinthebag campaign, even if you can't afford to do a bag but can donate pads that would be incredibly appreciated and it does make a difference.
If you were interested in volunteering for the it's in the bag campaigns click here, it truly was a hard yet rewarding experience. Or if you can't collect the bags consider offering your workplace as a collection point!
There are always opportunities all around us to help make a difference to someone else's life.
I know that even if you think it is a small act of kindness and that it wouldn't be noticed, it could in fact be a huge thing to that person and be the reason that hope is restored.
Wednesday, October 04 2017
In Early December 2015, I was 2 months into my chemo plan of weekly treatments and was rather unwell with the chemo side of things and was in hospital rather ill with an infected and dying tumour that saw me in hospital for the weeks and months to come.
It was around this time that I learned of the Share the Dignity #itsinthebag campaign, I think I saw it on TV or on Facebook, I tried to organise what I could for a bag. I didn't have much time or energy, so I did the best I could and sent Russ to the shops with a shopping list of things to get for the bag.
I wished I had of known earlier about the campaign and I would have been super organised, so I vowed the next year to start early and shop throughout the year when things were on sale and hoped to try and do at least 2 bags by being organised and nabbing great deals.
So the new year came and true to my word, I started getting organised.
To give and receive a #itsinthebag gift is something that can help improve the lives of a woman who is doing it tough. I have heard stories of how they got a handbag and it helped them to look and feel more confident/professional when going for jobs, I heard from teenagers who escaped a violent home situation and are in the foster care system and a new backpack is a luxury and having someone believe in helping them through school made them feel loved and worthy.... each of the women who receive a bag from you have their own incredible stories, and sometimes they need to be reminded of how incredible they are.
Some tips before you start your bag:
Here is how I managed to organise a bag on a budget!
Best of all I were able to organise not just 1 but 2 bags filled with items following these methods.
#1. Write it all down:
I know it might sound over the top to do things this way, but this is how I have organised present buying for years and it also means I am accountable for my purchases.
You would be surprised how many times I have purchased something more than once because I forgot about it.... even though it has been a year since my chemo finished I still have a rather frazzled brain, so lists and spreadsheets helps me to feel in control of my memory.
#2. Go through your own cupboards:
I found some hair dye boxes left over from when I dyed Russ' hair, some perfume sets I never used, some makeup that were unopened, spare toothbrushes and I also divided the contents of the container of cosmetics I received from BellaBox into two piles.
Having a chunk of things already meant I could save costs and could instead buy something else.
#3. Sales, Sales, Sales:
I start my Xmas shopping usually just after Xmas and take advantage of Boxing Day/Stocktake sales. I did this too when it came to my #itsinthebag planning and by having the best part of a year to shop and know what I was looking for, it helped me to nab some great buys at times.
I also take advantage of Click Frenzy deals, if you haven't heard of click frenzy it is this one day where sites offer crazy sales that are known for crashing the internet, it really is a clicking frenzy. I regularly scope out sites/stores like catch.com.au (formerly catch of the day), ozsale, kmart, reject shops as well as google.
I purchased a Roxy wallet that normally cost $20 for $5, so I grabbed 2. I found the eye masks (Kmart now have a range for $2) at Typo (with the help of a 50% off coupon) for $1.50, the beanie was from cotton on for 50c, as well as the notebooks. The backpacks were half price too. I got quality pretty design umbrellas on sale from Umbrellas & Parosols for around $6.95 on clearance too one was a leopard print.
Catch.com.au have 'club catch' where you receive shipping discounts as well as member only offers, sometimes there is ridiculously cheap priced offers but I find grocery store items like toiletries are really cheap to buy from here and are often a bulk buy too.
#4. Bulk buys and value for your dollar:
Say a pack of Pads were 1/2 price, it means if you purchased 2 packs that it would have cost the same as 1 pack would have, therefore doubling your price. Currently on Catch, they have a 6 pack of mesh bath sponges for $4.98 so 83c each.
Just keep an eye out in catologues or online for good special buys, there really is great value to be found if you shop around and compare.
#5. Afterpay makes bigger cost items more affordable:
I chose to organise my gifts for teenage girls, girls who are doing it tough. I knew a backpack would be great for school use as well as if they worked.
I took advantage of click frenzy sales half price or even less and grabbed 2 backpacks and put them on afterpay, which meant that I could break the repayments up over 8 weeks, which made it a little more affordable as well as not missing out on the sale.
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I really hope that these tips help you when it comes to organising your bag for the #itsinthebag campaign, just over a month before the collection period starts. Don't stress too much about how much or how little you put in, it isn't a competition and as long as you include the essentials such as Pads/Tampons, toiletries and the bag - then you are on your way to giving a woman the greatest gift this Xmas.
Last year my husband and I collected bags in our area and delivered to local charities who distributed them. This was such a rewarding experience and at one point there were over 300 bags sitting in my house!! The emotions felt when seeing each bag that had so lovingly been put together was truly incredible. I wrote about this experience here.
Everyone deserves some magic and kindness at Xmas.
Do you have friends who are doing a bag this year too? Why not arrange a date where they bring their bags and contents and you all sit around together and complete the bags. You could have wine and nibbles too, I am sure it would be a lovely and rewarding experience when shared with your best mates too!
Or if you can't put together a whole bag yourself, ask a friend if they wanted to do a bag with you and you could share the costs of creating it. She might even have a bag for you to use too! It is a perfect experience to share.
Saturday, September 23 2017
June last year (2016), I was told I had approx 12 months to live. I then wrote a bucket list of experiences and achievements I want to do and started working my way through it all. I had so much fun living and loving life that the 12 months became a blur. It took me to learn I was dying to really start living life, ironic hey.
One thing I have always wanted was a tattoo, it was more working up the courage to do but also finding something that resonated so deeply to me. Having struggled to feel this conntectedness between ideas, I thought I might best get something custom drawn.
I approached an artist Tasha from Jubly Umph that I loved her work and asked her to create something for me that is so personal and is something that I could continue to feel inspired by everyday. She began working on sketches for me and after some tweaks we had the perfect drawing.
I was so excited when Tasha asked me to write a guest post about my experience for her blog, you can read it here. I talk about my inspiration behind the design and why a tattoo was something that meant so much to me.
When it was my birthday back in March I had some family and friends gift me money with the specific intentions it be used on a tattoo. One of my gorgeous friends Bee gave me an envelope that said "open on the day you go to have your tattoo done" and inside was some cash, I thought it was the sweetest and thoughtful gift.
So the day before I had my tattoo done I got a call to say there was an opening for the next day, I was pretty excited and incredibly nervous. Russ came with me and I am so glad that he did.
My tattooist Megan - turns out is my stoma nurses daughter, what a small world!
I had been researching her studio and work for months, then one day I was in talking to my florist about my birthday the flower crown workshops and I bumped into Megan she gave me her card and I realised who she was and kind of strangely fangirled as her work is so good. So I had complete faith in her work, I was just nervous as I didn't know if it would hurt or not!
The day for the tattoo came, I chose to get the top of my arm done as it is a big design but also so on my bad days I can be laying on my other side and see it and be reminded of my strength.
A stencil was made of the design and placed on my arm to check for placement before the outlines were done, but also to check if the scale and size was big enough. We did this a couple of times as the positioning was off, only because of a mole and scars Megan realised she could work these into my tattoo design.
Now came the outlines, it didn't hurt as much as I thought, just like scratching really. The outline was finished, I got up to stretch my legs and to have some pain meds as I was sore from tumour pain before jumping back in the chair. I remember feeling so proud and excited! I felt on top of the world!
Now came the next part, the colour!
BOY DID IT FREAKING HURT!
I was doing okay until about a third of the way through and I was just bawling my eyes out. Russ was standing next to me holding my hand and I was a blubbering mess.
I now understand why you get it done in stages, I just felt like I was buff but I felt like a sook and was so embarrassed that I must look weak. I left and got in the car and just cried and sobbed, it hurt for a week or so afterwards too.
Best thing to help soothe the itch is this ointment from Woolworths called Dr Pickle, it really helped to moisturise it when it was dry and helped to fight the urge to itch it too.
I was really happy with the tattoo and the artist really did an amazing job at bringing the artwork to life. If you wanted to see more of Megan's work you can find her on Instagram under @meganlouisebucks.
It has now been 5 months and the tattoo is looking so good!
I have had a lot of compliments on it, have had a few opinions from others but at the end of the day what I choose to do with my body is my own choice and when people get too judgey I just fired back with "I am dying so who really cares HOW I choose to live out my life, STFU". I am so over comments telling me how I should live out my days. I am only trying to do what makes me happy and to squeeze a lifetimes worth of experiences into the matter of months and days, so I am doing my best.
One shop I went into the salesguy was telling me how trashy I was because I had a tattoo and asking Russ what he thought about his wife ruining her body like that and how it reflects on him, Russ was pretty great and had my back but it took so much strength to not punch him in the face. Like seriously, how does me having a tattoo affect my ability to be a customer. Do you want my sale or not?
I did hear comments like "your dad would be so disappointed in you and would be rolling over in his grave, if he were alive he would disown you". That one comment stung though, but I do like to think that if dad were watching from wherever he may be that he would be proud of me for choosing myself and for choosing to do things that made me happy, I would like to think that he understood out of anyone how hard it is to go on living your life knowing that anyday it could end, I would like to think that no matter how I lived my life in my final months that he would proud of the person I have tried to be... I always put everyone else before myself, so I wanted my bucketlist to be about me and doing things I wanted to do.
Before 12 months ago I didn't really feel that I had any idea or sense of who I was as a person, I do feel that I am starting to find myself and finding how amazing life is when you stop and look around.
It took me dying to realise just how beautiful life really is.
But my tattoo has become a reminder for myself that I am a badass and that I am strong, on my worst days I need this reminder, some days I need to know that beneath all these health issues there is still a young 26 year old woman trying to hold on.
Guest post on my tattoo story
Do you have a tattoo? Was there a meaning behind it?
Friday, September 22 2017
WARNING: This post discusses death, dying, suicide, euthanasia and could provide a trigger. Continue to read at your own risk. Opinions discussed are of my own and I have no paid or unpaid political affiliation with Dying with Dignity NSW, nor have I been asked to write on this topic. This is purely something that I feel deeply about and it is a topic I have been wanting to write for a long time. These are my views so please be respectful
I am not one to usually talk politics with you, but this is something that is quite personal for me and something I have had discussions with Russ at length about. It is a topic that is misunderstood or misrepresented in the media, in order to create fear and hate and divide people. This is more than just a topic for me, it is something I think about daily, and that is that I deserve to die with dignity and compassion.
This week (on the 21st of September) in NSW legislative parliament, a bill was presented to the NSW upper house called the Voluntary Assisted Dying Bill 2017. This bill was created to help terminally ill adults to die on their own terms with compassion, respect and dignity.
There has been many heated debates referring this to "euthanasia" which is misleading a lot of people, politicians included, by the myths and fear mongering tactics employed by those who are so loud in their opposition of this Act. According to "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, euthanasia is referred to as "life ending medication administered by a doctor". Under the proposed bill in NSW, a person who is at least 25 years of age, of sound mind, who is living with a terminal condition and is estimated to be in the last 12 months of their life based on the opinion of several medical experts, and is Experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient, can SELF-administer a lethal substance to end their lives and if they are unable to they can nominate a doctor or loved one to help them.
There is a need for this, a need for a law that protects and has the interests of those (like myself) who are dying from cancer or other terminal illnesses to die with compassion on our own terms when we deem the pain and suffering to be too much AND give us dignity in our deaths.
I have read reports of persons ending their own lives under horrific circumstances as they can't face this anymore. I know there have been times I have considered this, not out of depression but merely out of desperation. How can I go on knowing that the pain and my quality of life will only get worse - I didn't have any hope for the life I could still live as it is so hard... then add the feelings of guilt knowing you are hurting those you love and the FOMO (fear of missing out) on life and it can be too hard to bear. So YES, I can empathise with how someone can choose this.
Then referring to the above comment can lead to families suffering after witnessing a loved one's traumatic or "bad" death. By choosing this law families could ensure they get to say goodbye, a person could feel at peace themselves knowing they have no unfinished business, a dying person and their loved ones could make a beautiful moment or ceremony or way to commemmorate a life before it was over and it could help them to have control over their deaths and give everyone a better experience of the death.... I am not saying the loss of a loved one is easy by any means, but it could help give comfort to KNOW that they were not in pain, they were happy and they were surrounded by love.
I know my biggest fears are dying in pain and dying alone.
It scares me everyday.
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I remember back to my first university lecture on Ethics and the law when I was studying Nursing and the topic came up on Euthanasia. The whole room was literally divided and there were many debates, we even had to do an assignment on the topic. I got a High Destinction, but it was such a hard topic. I know then my heart was divided, I was being told that "NO, it is illegal" but my heart felt that morally it was unfair that someone should die in pain.
This lecture was before dad's cancer and many years before my own, but regardless of my own experiences of mortality, I do still believe that there can be dignity and compassion and respect in dying.
Because there are so many myths out there, I want to try and dispell some, to help show this bill won't affect anyone other than those who are terminally ill and living in their last 12 year of their lives.
Firstly, I am not saying my life or those with terminal cancer isn't worth living or anything like that, I believe in living life to the full and strongly belief life doesn't have to stop being lived. I plan on squeezing the most out of my life, and it is something I try to do everyday, but I know there will come a point where I am too sick and I am just simply existing and suffering in pain and only then is that when I want to say "hey let's do this". If this bill was already law (and it is something I have discussed at length with Russ) we would wait until we knew there wasn't much of my life left.
Truth be told, I have been told that my death is likely to be extremely painful and that pain meds won't help me... My pain levels now are barely managed and I am on high dosages already, knowing my pain is going to be tenfold compared to what it is now scares the crap out of me... I would much rather die happy and at peace... wouldn't you?
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Myth: This will hurt those who are vulnerable within the community.
Did you know? That under this bill you can change your mind at any time too. You won't be forced to proceed if you no longer wish to. It will always come down to your choice, afterall it is the point of all of this which is to give you a choice in how you die if you're palliative and 12 months or less to live.
Myth: Assisted dying is suicide, legalising it will ruin society as a whole
Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
Myth: Doctors don't know when you'll die, only GOD knows, no one can know these things so don't listen to a doctor they are wrong all the bloody time
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I could go on about all of this for a long time, but you can view these myths and more in the "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, to learn more about how this law WILL ONLY AFFECT those who need it.
I know it is a heated debate, I know some oppose it under religious beliefs, but do have a read up of just how important and life changing this could be to someone like myself - a young person dying from cancer.
Dying at 26 sucks enough as it is, it is painful, it is scary and most of all I have no control or relief. I know at some point in the next 6-12 months things will get a lot worse and more painful and I just wish that this was available if I felt it was too painful. Just to know there is an option to give me control in the end would give me hope that I won't be in pain forever and I could be at peace in the end.
I know I would only do this IF or WHEN the pain got too much, I would try and hold out as long as I could before.
Please visit Dying With Dignity NSW to learn more or to follow the progress/updates of the legistlature or to read other people's stories on the bill.
Regardless of your personal stance on the issue, do consider reading up on the benefits this could help to people like myself dying from cancer. It might not be something that will be able to assist me through my death unless it is passed within the next 6-12 months, but it is something that could at least help those in the future to have dignity in their death.
P.S If you feel that this bill should be passed please consider writing a letter to your local MP to voice your concerns and to help get this bill passed. Click here to find out how you can help!
Thursday, September 21 2017
This is not a sponsored post, we purchased the car using finance through the car yard, not a brag post either just celebrating a milestone I never thought I would be alive to see.
A year ago today I experienced 3 things I never thought I would ever live to experience such as purchasing a new car with a big red bow on it or even buying my dream car of a Hyundai ix35...
One was also driving a car again. 18 months earlier I was unable to drive a car due to a large rockmelon sized tumour that sat under my stoma, As the steering wheel already sat on my stoma and stomach already it was near impossible to drive safely or comfortably. Then I got the PICC line in and that made things difficult, then surgery and chemo again I really wasn't up for driving at all. Plus everytime I drove it was painful as I felt every bump in our old car.
So imagine how excited I was to drive again!
It was great timing too as we had just moved out of town Russ needed to take the car to Coffs for work and I was stranded at home without a way of getting to the shops or doctors/hospital if I needed to, so a second car came in handy at times.
I don't think I could have lived and experienced as much as I have this past year without this car, this was one of the best decisions we have made. Yes we were struggling week to week drowning in all the debt, but the car gave me so many memories and opportunities to get out more.
This car has seen so many adventures and so many conversations, and many games of i-spy. We started our own game versions including "name all the different types of wood" and "name all the different names for water" and so many other nerdy variants of I-spy. Russ even compiled a playlist on his phone of perfect Talya and Russ road trip songs.
I never realised a car could help me to live life as much as this new car has, being higher off the ground it is a lot easier for me to get in, as it is also higher it is easier for Russ to get the wheelchair in/out so he is more inclined to want to go out.
The car even has butt warmers, these help to keep my back and bottom warm which helps with pain, stiffness and inflammation. I only discovered this 2 months ago and would have made all the long road trips and day outings better if I knew earlier!
I have been to Sydney 3 times on bucketlist adventures for the Dixie Chicks, Royal Easter Show and Vivid. We never would have gone to Sydney via road if it weren't for this car, our old car wouldn't have made it and only option would have been to catch the train which is double the time.
This car has brought so many beautiful memories and I look forward to more with Russ thanks to Betty our ix35.
Tuesday, September 19 2017
Today was a pretty big day running around between appointments from one to the next, I was so pooped (exhausted) when I got home around 3pm that I went straight to bed only waking not long ago.
Yesterday and today have been the first days in over a month that I have ventured out of the house, it is a rather elated feeling when you feel so trapped and then suddenly you feel free. Hard to explain it really, but being cooped up all the time really gets to me emotionally. I think that is a massive attribution to my depression too.
So I welcomed the change of getting out of the house today.
So today's agenda involved meeting a new GP as my current one is on leave until end of Oct and I needed to see someone, running some errands and grabbing a bite to eat, then meeting with my bowel specialist who outside of seeing me in March (when I was admitted to the hospital) I was overdue for a meeting.
So first up: the new GP
I thought the appointment would be straight forward, I wasn't preparing myself for getting into deep and meaningful conversations today.
Unusually, I am still not used to telling strangers "hey, yeah so I am 26 and dying from cancer" I feel I am always having to say it with a smile in the hopes that it protects them from any hurt they could feel, I also hate feeling morbid and smiling also helps me.
I get a bit anxious when going into depth about my FAP story and how this is more than just a bowel cancer gene, so many doctors don't understand the complexity of it unless it is a field they study... so I was rather surprised when this doctor knew about it and said "ahh yes it can invade multiple structures" which was a relief as it gets exhausting sometimes having to fight and advocate and educate someone especially a doctor on diseases that you live with - I really didn't have the energy today to do this so it was great that he had understanding.
He acknowledged that no matter how many years he has been a doctor or how many patients he has seen that it never gets easy when you have a patient who you can't do anything for other than what issues or symptoms they had.
I got my referral for my appointmet and a script for some antibiotics for a nasty wound I had and he took a swab of it.
One part of the conversation that surprised me though, was talking about my beliefs of what comes after I died. I don't often get asked and I said what I felt and that is a whole topic for another time I think.
So off I went to the errands we had to run next (go collect a parcel from a courier depot way out of town) then forgot all about the chemists to get my script filled and went to lunch thinking we had plenty of time. An hour passed still no lunch and had 10 minutes until my specialist's appointment when the food finally arrived and I scoffed it down and left. Was rather disappointed as I had been waiting and looking forward to that lunch date for sooooo long and it wasn't able to be enjoyed afteral.
Next up: Specialist's appointment
So he called me straight in and I sat down.
He asked how was the concert (the whole reason I discharged myself from hospital) and I excitedly told him how that not only did I win the tickets to the Dixie Chicks but they wanted to meet me too, which is something they don't often do on their tours. He was so happy. I continued to tell him that they dedicated a song that was special to me and my dad to us and he said he was so glad I could make the concert of a lifetime.
He is a great and caring doctor, he has been my doctor since 2010 so he has been there for me right from diagnosis of the cancer gene right up until this point of my life, so he has been with me through everything. He has an amazing bedside manner and has always gone above and beyond for me, he is so kind and he even takes the time to talk to Russ down the street and ask about me.
Before we dwelved into what I needed for today's appointment, he asked what can he do for me, anything? Not often I get asked what extra assistance I need, but I am not good with asking for help. I did ask for possibility of him booking me respite at the hospital again soon as I need it, he said consider it done.
We talked about what is currently going on in my bowel, Russ never comes to my appointments with him as he always usually was working, but luck had it that he could come with me today. Russ was the one that brought up the pain when I eat before I had the chance too, it was all stuff paliative care have explained to me before, but the first time Russ heard a doctor explain it.
Imagine someone with heart issues tries to walk 100m and experiences sharp pains or angina, essentially my bowel is not getting enough blood supply for it to work. My body quickly rushes blood and it surges to the area to try and make it work. Because of the short blood supply my bowel is trying to run a marathon as a sprint. Gee is it bloody painful!
So everytime I eat I get horrible pain that lasts hours after my meal.
He suggested that I try shakes, protein drinks nothing foody (blended nutribullet as it isn't really a drink) and just try those. I know when I drink or have soft stuff like icecream or zooper doopers (ice blocks) there isn't the pain, which he said would be true as it isn't food and anything food like requires the stomach and bowel to work to process it. He said watery soups would be good too, but I am not a broth type of person. So drinks and ice cream it is!
Next issue was to do with my stoma, when I eat say 7pm my stoma isn't actually working and processing bulk of my output until around 5-6am the next morning. It never used to be this bad. He said it is caused from a bowel obstruction caused by the massive main going-to-kill-me tumour as it is compressing the bowel to narrow and food can't pass properly until it is a massive push/release. He said it isn't my fault just again tumour related and even if I reduced meal sizes he said it wouldn't make a difference and that to not have as much fibrous or foods.
Before we left he did tell me that he thinks I have done an amazing job through all of this to remain the same kind and positive person, he said my attitude towards things have always helped him and he always admired how well I handled things. He said that he acknowledges that the last 18 months with my new stoma hasn't been easy but he said he is proud of how I have adapted and gotten used to it.
It made me feel better to hear from someone such as my Doctor to think highly of me, made me feel like maybe I am strong afterall.
☟ ☟ ☟ ☟ ☟ ☟
Sooo pretty much that is where I am at, that is latest health update and I am just trying to make the most of whatever time I have left. It is hard to know you are just basically waiting until you die, but I am trying my best to not let that get the better of me. I know (well, I hope) I still have a lot left to give.
If you read this far, thank you! I know I don't always update my blog as often as I would have liked, but sometimes when you spend 20 hours of your day in bed asleep it is just easier to microblog on facebook or instagram. You can follow me between blog posts by searching @feelingostomistic or twitter is @feel_ostomistic.
Saturday, September 16 2017
Is it only me who feels like the last year has been a complete blur? I know this is how it feels for me! I started writing this post back in 2015, then wrote more a year ago but only now have I finished it. I know it is long, I am sorry, but excitedly it was something that took time to write and unfold. I am not writing this as a brag post, merely sharing the process and how we got to building.
12 months ago we got given the keys to our first home... I remember this day so well, as if it were only yesterday. Gosh, that year has gone so fast, crazy!
12 months ago I didn't even think I would be here a year on to celebrate!
We finally were getting our house, a house that we worked hard and sacrificed over years to get, the house that I thought I wouldn't be alive to see. It was a massive goal and dream of mine (well, ours) to have our own home.
I know a lot of people have judged us for "not really doing it hard " when we were able to build a house and loved making up rumours that we were rich, but we weren't and aren't flushed with cash by any means at all. We saved and sacrificed and worked hard over years to get our own home and we had our fair share of setpacks and hardships during those years, but we never gave up hope.
I have copped a lot of flack on my blog and my facebook page about building and buying our house, I have been told I am a fraud, I have been on the end of horrible jealousy and judgement when inviting people into our home.
While I acknowledge that yes I am fortunate to have my own house, I really don't deserve the vitriol and to be made to feel ashamed of having my house or that I could achieve something that I have always dreamed of doing which was to be a first home owner.
I acknowledge that it is very unaffordable to live in places such as Sydney or Melbourne or Brisbane and it is harder for first home buyers to afford their own house. We live in an area of rural NSW where house prices are a fraction compared with those in the bigger cities.
So this is not a brag post in anyway, it is a post that showed our story to how we remained hopeful that one day we would be lucky enough to be home owners. A story of how we eventually got to something we talked about for years. A story that I want to share of our house and how it came to be....
It was cheaper to build a house than buy one, but it doesn't mean we aren't still struggling each week to make ends meet. I still don't have any life insurance and still haven't gotten my super out, we are still drowning in over $15k in credit card debt.
But out decision to have our own house came down to several factors:
How we got here:
We would apply for a homeloan every 6 or so months since early 2010 and usually would be declined and told to come back again in 6 months and try again.
We were fortunate that with Russell's income, we had worked off some of our debts to look more appealing, the little we had saved over the years and the low interest rates meant that the banks were willing to offer us a homeloan, we weren't even expecting a yes that day, I remember we went home and we cried and hugged for hours that FINALLY we could be getting our own place.
It was a dream come true, really!
But for what we needed there wasn't anything in our budget that didn't require a lot of work and rennovations which was money and stress we couldn't afford. Also, because Russ was still on his L plates or his learner's license we were more or less confined to living within walking or riding distance to work, which limited the area we could look at.
We also wanted a house that was:
If we were lucky to find something that ticked most of the boxes it still needed a lot of work done.
I know it sounds like surely a lot of places would easily fit our budget, but with only a budget of $350-390k our options really were limited to:
Deciding to build over buying an established house:
We had mostly given up all hope of having our own home, then the bank manager said these 5 words: "have you thought about building?" and it changed everything. Yes, we had thought about building and No, we didn't think it were possible based on quotes we had years ago the house cost more than our entire budget!
We had always hoped to move out of Coffs at some point and preferably would move to Woolgoolga. We had always felt Woopi felt more like home for us and Coffs was just far too busy, noisy and crowded for our likes. It was close enough to Coffs if we needed doctors or work but far enough away. It is only around 20km north of Coffs Harbour.
When we looked into land, stand alone house costs to build or house and land packages in Woolgoolga (and surrounds) we noticed that the land outside of Woopi in older beachside towns/suburbs was cheaper too approx $200-300k difference in price than in Woopi but only 5km away.
Russ was keen on the move too and I told him he wouldn't move until he had his P's, so he became more committed and took up driving lessons and actually would drive most places to get his confidence up. Excitedly he got his P's first go in June last year (2016), I cried tears of joy and relief and was so proud... been a big year for milestones for us both!
We found this perfect house and land package that fitted our budget perfectly that we drove out to Woolgoolga that next day to enquire. We got to the real estate office and told that the contracts were exchanged earlier that day and that it was now off the market.
I felt a bit bummed out, it was the last available block in the estate, I felt like the hope I had for our future was gone.
But, alas, there was hope again:
On the drive back to home (Coffs) I called into the display home for the builder the earlier package was from and wandered inside. I told the salesman we were interested in the property that was sold earlier that day and if he knew of any other developments coming up that we could secure something early to avoid missing out again.
He replied: "I think I have something for you", feeling hope returning he ushered us to have a seat at his desk. He pulled out the estate plans and circled LOT 14, he said "a block has just become available today after a couple pulled out due to finance falling through, it is double the size of the one you were keen on for a fraction of the price. It is in the first stage release and building can commence in the New Year".
I was so surprised when the builder said the house could be built for $235k! I almost fell off my chair. It included rendering the house and we opted to get airconditioning installed post build as we ran out of money in the budget initially. We had to pay for extras like fencing, tiles on the outside patio, landscaping, turf etc.
It was 16 September 2015, (year to date later we got the keys and moved in) I was due to start chemo in the coming weeks and not knowing how long I had to live, we wanted to do whatever it took to secure this block and start the build, so we could move in the following year and thus ticking off another life goal of ours.
I looked at Russ and asked him if it felt right with him and he was definitely keen, so keen he handed me his credit card. We handed over the deposit they needed which was only $1k - and we just put it on the credit card so we didn't miss out.... and so the process began!
I think the sales person thought I was nuts for opting to build a house while undergoing chemo.
But you know what, I think the build was the one thing that helped me to get through chemo - knowing there was something so exciting to look forward to- it became the best part of my week driving out to check the house progress.
Which brings us to 12 months ago today!
The house was 3 months behind schedule which meant that it was 3 additional months we hadn't quite budgeted for with the additional rent and were struggling. We were paying rent of $375 a week plus the mortgage on a house we weren't even living in, and I was so stressed trying to pay all the bills and afford to eat that we added everything to the credit cards (which we are now drowning in debt to repay and get on our feet).
But the day for final inspection and key handover was finally here, after being pushed back weeks and even days that same week, Friday September 16th had arrived!
We had to be out at the house by 7am sharp ready to do the handover, Russ was having to leave for work by 8am and our furniture pieces (spare bed, lounge and outdoor setting) were due to be delivered at 8am too, the fridge and dishwasher would arrive at some point that morning too. It was absolutley pouring, so much rain and very wet and muddy.
When Russ left, it was just me at the house all day without a car as he took the car to work. I remember just walking around the house all day just feeling so surreal that this was actually ours. Everything looked so new and shiny and was too perfect to live in, I was scared to make a mess. That new house smell too, it felt like I were on holidays.
The builder gifted us a picnic hamper and wine, which came in handy as we hadn't thought as far ahead about plates/cups/cutlery! Was a very thoughtful and unexpected gift.
Wasn't long and I scratched the wall and the place felt like home.
Our first night in our own home:
That night we ate pizza out the back on the patio on the new outdoor setting (was our only table setting for a fortnight) using the picnic hamper the builder left as a gift for us, and we toasted to our first night in our house drinking homebrand pineapple fizzy!
We slept on the spare bed that had arrived earlier that day and I never stepped foot in the old house again.
Never have I ever felt more at home before, but here I feel so happy and we truly love it here. It is so quiet compared to where we lived which was on the highway in Coffs Harbour at one of the busiest traffic intersections.
I feel healthier in this house too, which sounds strange to say as I am dying from cancer. But, the old house I think was making me sicker than I was already as the house leaked/flooded everytime it rained, normally in winter I struggled to breathe and my asthma is horrid - this winter I wasn't in hospital once! It is normally my second home in winter as I can't breathe. Could be there isn't the added pollutants of the traffic too here.
We just love it here!
It is only 17 minutes for Russ to drive to work of a morning and after he got used to the routine of driving of a morning instead of just walking or riding his bike he was fine. He is a lot happier here too.
Woolgoolga was where Russ called home for most of his life, he said it feels great being back.
The town is so welcoming and kind, everyone is always saying hi and smiling, kids you hear laughing and playing in their backyards, they too seem happy which makes you happy too knowing others are happy.
But the 5 best things about finally having our own home is:
It was a long road to get here, so many times we almost gave up along the way thinking that it would never happen. Never give up on a dream.
I had some people when we said we were going to build say to me "but you're dying, what is the point really?". How I saw it, was that no matter what my prognosis is, Russ still needs somewhere to live.... but why should I give up hope on seeing a dream I have always hoped to come true just because I won't have a long life. I know it is hard at times to understand why, but everyday that I am alive I want to live a life I love and that I am proud of... just because I am dying doesn't mean I stop wanting to live or to achieve my heart's desires... dying just made me want to move a lot of things along earlier than expected.
Please keep an eye out for more posts I am writing, I am catching up on over a years worth of posts. But if you want to ask advice and you haven't been able to find it on my blog feel free to contact me or check out my facebook page too as I often blog on there too.
P.s if you read this far, thank you! Russ and I are working on some more posts about the build and advice for others just lessons we learned along the way, so keep an eye out!
Sunday, August 13 2017
It is hard to believe that it is almost 12 months since we have moved into our new house!
I have been so busy trying to live and love life, plus enjoying the good days, that we haven't yet completed unpacking our house and we have so much left to do. This has had me feeling rather disappointed in myself as I was really hoping to have had the house set up and finished by now. So while we have nothing planned for the next few months, I really want to focus on finishing the unpacking and working on styling the house.
Having a beautifully styled house that I am proud of is one of the things I wanted to tick off my bucket list!
The first room I want to finish is our master suite (bedroom and ensuite). I spend so much time in my bed, bedroom and ensuite, that for me it is my most used/lived in space. I really wanted the room to make me feel happy, safe, comfortable, relaxed and proud; but more importantly, I want others visiting me to feel the same sense of comfort.
I had hoped by now to be able to have afforded a full room makeover, or to be on our feet financially for that matter. We have been adding pieces to the room as our budget has allowed us over the last year, but we still have a way to go. I love a good bargain and hunting for things
Russ thought it would be a good idea to perhaps write a blog post as a wishlist of what we want to achieve so that in a way we can hold ourselves accountable for ticking off this goal of finishing the house, and especially our room.
So, this is the accountability post for completing my master bedroom and my wish list for the tropical styled things I want in it.
I promise to do an 'after' or finished/completed type post, otherwise I will share the gradual progress on social media until then!
With spending so much of my time in bed, or unable to get out to shop in person, a lot of that time is spent just browsing sites to get a clearer picture of styling/product ideas. It is always nice when companies have a good online store with stock updates that are timely and reliable. If they have social media too you can see how other customers are using their products to style and get ideas from actual users of the products. I know I browse through Fantastic Furniture and Pillow Talk online all the time (as they are two stores close to where I live), always keeping an eye out for sales or new stock. I have a few other sites that I regularly do the rounds to check for the latest products, styling ideas or latest sales (I wish the reject shop had an online store), it really does help to pass the time when you are otherwise stuck in bed.
Another way to pass the time and find inspiration is Pinterest! I only hope I can create and style a Pinterest or Instagram worthy house on a budget!
I am hoping the quilt isn't the reason the styling of the room falls apart, so I am hoping I can make it work to pull it off! I really love this quilt especially as on the reverse side it has this nice aqua colour + it matches with my purple (fave colour) sheets, so not sure if I want to part with it. However, if necessary to better the room then I might, but it makes me feel so happy and that is my priority!
Were I to change quilt covers if I felt it (the above quilt) really wasn't a fit, I have found some others from Pillow Talk and Spotlight that I have pictured below. It is so hard to choose what one I like the most, so these are my top 10! Pics to the left are from Pillow talk and pics to the right are from spotlight respectively.
We purchased it back in 2012 from Beds R'Us and it was looking amazing until Dusty recently decided it was in fact his clawing post (I cried, it was heartbreaking to see/hear). I had thought about upgrading our bed but my heart is too set on it. It is a king size; it is leather which is easy to clean; it is white which means ANY quilt cover looks great and that it can be suited to any theme; it is the right height for me and doesn't hurt to get in and out of like our timber bed before; and besides, it looks so elegant too!
I know Russ has thought about upgrading our king bed maybe after I die, he feels it is too pretty for a guy and too hard to keep clean because it is white, not that he wants to remove my existence from our home- just he might feel like a change, who knows? If he/we did upgrade this is one that he has his heart set on.
Something to note is it is made from Acacia wood sourced from sustainably grown plantations (which is a tick from us as we try to be environmentally conscious), but the beauty of this timber is that it would beautifully match a tropical themed room! It is a bargain at $799 with 6 years warranty too (I think Russ is all for extending our warranties from his job as a salesman), as opposed to the $3500 we paid for our current bed, so if we/he upgraded it is a nice and affordable option indeed. Felt pretty solid too.
I have been wanting the TV set up in our room so that I could watch Netflix, a movie or catch up on missed TV shows. I'm not well enough to sit out of bed for long most days, so having the TV in the room would help. I am struggling typing or holding my phone and iPad the last few months, the nerve damage from chemo and the tumours are making it painful to touch things. I try to use my iPad but it is frustrating sometimes at how small the screen is or at the lack of sound (remembering I am deaf in one ear) so it makes sense to set up the TV where I can see it comfortably.
So Russ one afternoon last week told me to stay in the lounge room as he had a surprise planned... surprise (see picture below)! He had set the TV up on top of some cheap/flimsy bookshelf from the shed. Doofus! I loved the sentiment, but I am so worried as Dusty is a climber who likes jumping on shelves. But it has been great the past week enjoying TV from the comforts of my own bed!
We have been looking into options to put the TV on. It needs to be at a height of 900mm or higher due to laying in bed and not having a clear view if any lower.
So we have found two options: We thought that a chest of drawers would give the best height plus allow for additional storage. Russ wants the tall 4 drawer as it is 150mm taller than our current set up, but aesthetically I think the 6 draw would look and fit the space better - though it is 100mm less (but TV is awkwardly watchable). The two we like are in the Toronto range from Fantastic Furniture and there is only a $100 price difference. I can't decide, but once we do we will enquire into layby options to pay it off over a set period which makes it more affordable. I know $599 or $699 respectively might not seem like a lot - but it is for us when there isn't a lot in the bank.
We needed to get a cupboard for the hallway (can never have enough storage) and Super Amart had a 'buy one get 2nd item half price', so we only paid $225 for the armchair (it all went on our G.E. interest free card)! It is the 'James' and is the same as the lounges in the living room and it is wide enough so I can sit in it comfortably - if I want to sit and read, it has big arms and is really spacious. Russ often sits there reading a book while I am sleeping, especially on my bad days, so that he can watch over me and feel he is close by. Dusty also has claimed the chair as his, so just like every other part of the house this was business-as- usual.
The chair for us was a must have for the future too. There will come a point when I am declining in my health and I want people to visit me and be comfortable. Russ tells me that it is 'typical Talya behaviour - always thinking of others needs', but all I want is for people to want to visit. It is a fear that I will be dying and be alone and I don't want to die not knowing that I am loved. So this chair is important and it gets used often.
When we were in Fantastic Furniture recently I stumbled across this flamingo canvas artwork (below) that has all the colours of my quilt and is keeping in with the contemporary tropical theme, Russ really liked it too, so we are hoping to get it when we can afford it. It wasn't much, around $49 from memory.
I also enlisted the help of Foote and Flame to cut out some bamboo shapes of different tropical leaves so that I can hang these around my room and make an art piece from it. I also found some cheap tropical leaves in Kmart for $3 in various sizes and styles too. I know pillow talk have some too. I am hoping on the next day Russ has off to look at placement of the wooden and artificial leaves.
I know we are trying to fit a lot into such a small space and I do hope that in the end it all looks as homey and relaxing as it does in my head. I am hoping now that I have written this that it holds Russ and I accountable for getting our house sorted. I know 12 months ago I didn't think I would still be here today and I know the outlook isn't too great for the next year, but I just really want to feel calm knowing my house is in order.... literally and figuratively! I want to not feel anxious over if I have done enough or if people are judging me.
I am really wanting my room to be my tropical escape as I won't have the ability to travel there myself I want to bring it to me.
I am also not an interior designer or stylist, so I don't know if the mood board I have in my noggin' is going to work, I will just have to see won't I!
If you know of any tropical themed wares over the coming weeks and months feel free to let me know so I can check them out. I am really wanting to have my room finished by Christmas/New Year at the latest. Plenty of time I know, but if the last 12 months have taught me anything it is that Russ is a snail (when it comes to getting things done) and time certainly does flies by!
So tell me, do you have a themed/styled room or house? Which room of your house is your favourite?
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!
Sometimes the internet can be a beautiful and magical place,
So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!
On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.
Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.
But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.
What came next:
After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.
I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.
What came next from my post was unexepected!
I was blown away by the response and all the thought and love that was being sent my way.
I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!
So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!
Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.
So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.
Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.
Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.
It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.
I am so grateful to Russ and for everything he does, he is one amazing guy!
I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!
Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical.
Tuesday, June 13 2017
“Life is 10% of what happens to us and 90% how we react to it”
Facebook memories can sometimes be a double edged sword. On one side it shows you the silly and mundane status updates that have you questioning what on earth you were thinking way back when. Then there are the moments that your life changed in an instant in what feels like a lifetime ago, but was in fact a year to date. It has the power of instilling those emotions you felt at that time and can feel like a sharp stab at one’s own heart.
Sometimes it can be bittersweet and reminds me of the little ‘wins’ in life: like the time my husband got his P’s after 20 years as a learner driver and I felt immense pride for him but cried tears of relief that I now can take a step back and not be the sole driver; or that time that I drove a 4 hour round trip to spend Good Friday with my family (having had chemo the day prior) and felt so sick, but I was able to hold my nephew for the first time since his birth and he smiled and laughed with me and in that moment I felt an overwhelming sense of love and happiness, as if all is right in the world, for that boy has the most infectious smile that makes you feel so happy.
1 year = 12 months = 365 days = too many minutes and seconds to be happy
Today’s memory however, was that it was 12 months to the day that I was told chemotherapy was stopped, that I had exhausted all other options and was admitted to hospital under palliative care… I was given 12 months to live.
I remember that day clearly, I had turned up to my chemo appointment thinking it was a normal chemo day. I drove myself to the hospital and had expected to drive myself home; instead I called hubby and told him I needed him.
I remember feeling so terrified, I was scared now having been given a timeframe and I didn’t know what to make of any of it. What if I did life wrong, what or how was the best way to spend each minute of the day, was there even a right way? I didn't know what to do, I just knew I wasn't done trying just yet.
But amongst all the fear felt, I also felt so much guilt. I felt that I had failed my husband, my family, my friends and myself.
Most of all I wasn’t ready for the end.
I remember crying so much that day just being held and consoled by my husband, we cried together and despite no words being spoken we knew what the other was feeling.
So I started writing my bucket list and planning how I wanted to spend the next year, particularly, my final moments. I began organising my funeral and how I wanted my life to be celebrated. I tried to include my loved ones in organising/talking about my funeral and joining me on bucketlist experiences in the hopes that it helped them somehow.
But one thing I knew for sure, was that I was determined to spend the next year living life as fiercely and to the fullest as possible.
Choosing my legacy and how I want people to think of me:
I wanted people to remember me not for the hardships I faced but for how I chose to face life, I wanted people to not pity me but to think “hey that is one strong, badass and positive chick”. I didn’t want the next 12 months of health issues/decline and struggles to define me, I was determined to try and help others.
I feel like the last 12 months have been incredibly exhausting, I feel like not only have I struggled with daily challenges but that I also have lived the most I possibly could have too.
In the face of adversity and a time I should have been selfishly focusing on myself, I started a magazine for other young people with a stoma that has been well received all round but also what I hope will be my legacy.
But my determination to try and help others didn’t end there:
I have tried to empower people to make better choices through learning from my mistakes, I have tried to challenge people to think about how they talk to or treat someone who is chronically or terminally unwell, I have tried to help others feel less alone in sharing my story openly and I have tried to encourage others to live their life as they see fit.
The last couple of weeks I have been struggling with depression and felt myself in a downward spiral. I have been told I am dying too slowly, that I am a burden on Russ, that I am a fraud because I am not on my deathbed now; all in a matter of weeks.
I am feeling a lot of self loathing (and as a failure) as I had hoped a year on our finances would be in a better state, that things would be less messy and more manageable for Russ to takeover. Yet, despite all the frugal efforts made, I still don’t feel things are better 12 months on. I had also hoped to be prepared enough and finish my funeral preparations by now too.... but things need a lot more working done. I also hoped to have saved/paid off my funeral too (I don’t know who I was kidding).
I just regret not having life insurance so much, it could have made life a heck of a lot easier.
So please if you can learn anything from this story is to never just take one opinion/advice from a person who is “an authorised representative”, to always get another opinion.
I HAD life insurance and when I stopped working I was told that my life insurance would be void if I had no EMPLOYER contributions made, that I couldn’t just make them (the contributions) myself. My insurance lapsed as a result. I later spoke to them again (6 or so months later) only to be told that the information I was told was incorrect and I could have made contributions all along and I would still now be covered or be receiving the benefits owed to me.
That one person who incorrectly advised my rights has caused so much stress and inconvenience to my life and while I have been told that person no longer works there I have been left to live with this mistake $600,000 poorer… I didn’t question the advice as it had come from someone at the company, that I assumed them to be right.
If only someone had of told me to get a second opinion.
Same went for my thyroid cancer, a respected endocrinologist told me there was nothing wrong with my thyroid and a week later I was in Sydney having thyroid biopsies done as it was actually cancerous, sadly in “the sticks” there isn’t always a second opinion you can get but I am lucky that I sought one in Sydney. Or that time I was told I was diabetic from a Doctor without any testing being done and started medication, it didn’t feel right and made me sick, I saw a different doctor a month later and was diagnosed with anaemia not diabetes.
Moral to the story, if it doesn’t sound/feel right always get a second opinion.
Your best teacher is your last mistake
Though all of these moments impacted on my life, I learned valuable lessons about myself or others around me.
If you do happen to make a mistake along the way just learn from it, don’t be too hard on yourself and be forgiving - you wouldn’t really be living if you didn’t make mistakes. Just learn from them and make yourself more informed for next time.
So here is to time and life, may we all take everyday as it comes and try to stop every now and then to take it all in, or smell the roses as some say. Life is so precious and I am just grateful to still be here 12 months on and living by my promise of trying to help others. So learn from my life if not for helping yourself, help someone you know.
Time and life is something that can go by so quickly and before long it is a year or 5 years later, so it is important that you make the most out of it. To be cliche and all, it really can be taken away at any time. I know I am cherishing everyday I have; as I know age, time and life are all a privilege.
“Life always offers you a second chance… it is called Tomorrow!”
Friday, May 05 2017
NB: This post was also written to be published on abiggerlife.com
This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.
So you can imagine how much I had to learn and understandably was very overwhelmed with information.
One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.
So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!
I wished I knew these when my life with a stoma began 4 years ago...
#1. A hairdryer:
p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.
#2. Invest in some supportive garments:
With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.
In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.
#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.
#5. Gastro stop or loperamide:
#6. Linen and mattress protection:
#7. Stoma supply storage:
#8. Wet wipes or Chux cloths:
#9. Scented garbage bags:
#10. Room spray or freshener:
I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate.
You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.
Sunday, April 09 2017
One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.
It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.
So in June I stopped treatment and entered palliative care.
A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.
It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.
So I had been planning a little bedside table makeover for a while, well had talked about it.
It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.
So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!
We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.
Some of the items had been found on clearance or at a cheap price.
So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.
My brother said it had to have a necklace in there too.
So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.
So now the memorable (and humiliating) part to the story....
The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.
My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.
I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!
"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".
I can now pass on knowing at least I have left them with one solid and hilarious memory.
Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.
Sunday, March 05 2017
It is my birthday in 5 days and I am struggling with it, this is the first birthday in 5 years I have wanted to celebrate it. I am having a birthday of my dreams with items on my bucket list e.g enjoy a cocktail again, have a high tea for my birthday, do a flower crown workshop. It was meant to be a surprise vow renewal, but Russ shut that idea down quick smart.... he still claims to hope I will somehow miraculously make it to our 10 year in 2020.
I know it sounds weird that this is the first birthday in 5 years that I have wanted to celebrate, even though that has its own rollercoaster of emotions to accompany it.
This birthday is my 26th birthday but it is also very, very likely to be my last.
For the latter reason, I tried to put aside my issues and feelings to try and have the best birthday I possibly could not only for myself as I feel I need to be shown I am loved and that I matter lately (that is a whole story for another time) but I also knew that THIS was important for my family and friends.
I was told last month that "I don't understand what the issue is with your birthday, you are the only one feeling this way".
It kind of made me feel a little angry that my feelings weren't valid and that I should just suck it up, but this isn't that easy.
You see my birthday was always something I shared with my dad and we would always do a combined birthday, my birthday was the 10th and his the 11th. It was always precious moments I shared with him.
Why I find my birthday hard ☟☟☟☟
It was March 10th, 2012 when he actually started dying. He was terminal with cancer, but that day - my birthday - was the day he started his dying process.
It was also my 21st birthday.
I had this whole day planned, spent over $3000 on it and family were travelling all over for the day mostly because it was my birthday but a big part of it was they knew it very well would be the last time they would see my dad. I knew that, they knew that, he knew that.
So that morning I arrived at 7am to my dad's house to be greeted by my nan who said "He doesn't want you to know this, but he probably won't make it through the day". I went in to see my dad and to sit with him. He looked at me and said "you f$cking know don't you?" and he started yelling at me. I knew this was because he was frustrated, he felt like he had lost his independance and the one request he had to everyone was to not ruin my birthday by telling me, he was so selfish that he wanted his daughter to have a great 21st birthday, but he was angry.
I was so upset I jumped back in the car and drove back home to drive back ready for the party. It was a 3-4 hour round trip and I used the excuse I forgot my outfit (which I did). I drove the whole way crying, shaking and at one point pulling over because I was having an anxiety attack and couldn't see. I wasn't alone, I had Russ with me who was talking reason to me.
I had to get all my tears out before I returned to see him again, he got angry if people cried and gave him pity so you had to hold it in or if you felt you couldn't he didn't want you visiting.
So I got back to his place, I was eager to cancel the party because I wanted to stay with him and do something different.... but he wouldn't let me. He didn't want me to miss out on my birthday and he tried his best to get there but sadly he couldn't.
I understood but boy it hurt.
I got to my party and felt so guilty, I felt like I was the worst person in the world and that everyone would be judging me for being there instead of with him. I made an appearance and snuck outside and just cried for ages. My best friend came looking for me, she had a drink in her hand and she told me to take my time. I had a couple of drinks of liquid courage and went back in to face everyone.
I had a few more drinks and started to loosen up, I started to dance and had fun, I was surprised the DJ knew all the songs to play and I was having such a good time.
Then it hit me, I felt the guilt again and then I started crying all over again.
Midnight came and the venue needed to close and I headed to dad's where I was meant to spend the night but knowing he needed his rest my friend let Russ and I stay there. He was waiting up for me and gave me my present, it was this beautiful silver heart bookmark engraved for my birthday.
He proceeded to tell me that he was texting the DJ all night the songs and he was telling my dad how I was, he knew already that I disappeared early in the night and was pretty upset but I tried my best to have a good night.
Next day was his birthday and we sang happy birthday via webcam as his room was too small with all the hospital equipment to fit over 20 of us. He managed to get out of bed that day and walk around with assistance, and I thought maybe he wasn't dying afterall.
Later that night it was only Russ, my brother, dads partner and I that were there when his breathing slowed right down that I thought it would stop and he was losing consciousness. We called the ambulance and I thought he was going to die. He held my hand and talked to me. He told me he was sorry and that he was proud of me.
When the ambulance officers came they told us to make ourselves familiar with his end of life wishes and to have the plan at hand, knowing when the time comes we weren't to do anything as he was DNR.
The next day I was having severe endometriosis pain and realised I had no pain meds with me and needed to drive home, as Russ didn't drive I had no way of getting back to dads so went home to rest. I got the call to say the doctor had been and they said he might have a day or a few days but definitely need to get everyone to say their goodbyes.
He died overnight, getting the call at 4am and jumped straight in the car and drove down.
He had always said he wanted to make it to at least see his oldest turn 21.
Why I struggled since to want a birthday ☟☟☟☟
But each year since, I would get rather depressed leading up to it. I had a lot of guilt and I felt traumatised from the events around my 21st birthday and that my birthday never felt the same, I felt like I was missing a piece of me.
So I decided not to celebrate my birthday and would use this time to go away with Russ somewhere that I could just escape everything and everyone, I know it is selfish but I really can't cope with the overwhelm of feelings. But it is also because I just can't cope with this feelings, so I avoid them, I am in denial that I need to.
Fast forward to this year, after the suggestion of family they felt that I needed to do this for them, so I have been trying a lot to make this a memorable time for them and hopefully myself, but it is hard when everytime I feel a little excited I then feel this massive overwhelm of guilt and I start vomiting. I can't help but hate myself for trying to want a good time when these feelings keep coming back.
I know no one understands why this time of year isn't easy for me, but it is so hard... it is hard to not feel survivors guilt or that I shouldn't be happy so close to his days.
I am trying my best but I am also struggling.
So I am stressed, I have $800 worth of things needing to be paid for before Friday. I applied weeks ago for a special terminal illness grant to be approved as a dying wish and still haven't heard back even though Russ has sent numerous emails. All the vendors demanding their monies and I am so upset that it won't be the perfect day I dreamed of. I have the cake $200, food at the venue $240 or $6/head and the flower crown workshops of $400 ($20/head). I know guests are paying for their own cocktail high tea in lieu of gifts ($35/head) as there was no way I could afford that too.
Didn't help that last week my cake maker pulled out and had to find a new one, which I am loving the cake.
I just worry I won't have enough time to wrangle money together if they don't let me know ASAP an outcome, I need to have time to either find things to sell or convince Russ to use one of the credit cards which means also getting the bank's approval as it will affect the outcome of our homeloan review in the coming months.
Besides, Tuesday I have an MRI and that has me rather anxious and worried.... just keep asking them to keep the results until after my birthday...
I just want to try and have one LAST memorable, uneventful, drama free birthday! Is it too much to ask of? BUT wish me luck, please, that the rest of this week goes smoothly!
So if you have heard me talk about why I am struggling leading up to my birthday, this might explain it all! But it is a comfort knowing that I will see him soon, life hasn't been the same since.
I miss dad so much ❤
p.s pretty keen for my first drink in 5 years, just hoping it doesn't trigger a pancreatitis attack or interfere too much with my medications... drink of choice is a fruit tingle
Tuesday, February 28 2017
"Nothing can dim the light that shines from within"
I have heard this quote time and time again, often stopping to reflect on what it means for me. On days like today, where approximately 350 million people worldwide come together to shed the light on World Rare Diseases Day and helping to raise awareness of the different rare diseases by giving patients a voice to share their lived experiences.
For me, everyday is rare disease day and I am reminded of that several times a day.
But it is important for me that while I try my best to share my story to educate, empower and inspire others on their own journeys, that I know that all of this doesn't define me and I that I am not my disease(s).
I don't live with one rare disease but three, which have all attributed to different health issues mostly chronic, but these have helped to shape me into the person I am today.
One thing being rare has taught me is that I am resillient.
I live a life that is different to that of my peers, it has often felt lonely and isolated, but there have been times where it hasn't been. I know Facebook changed my life for the better, it helped me to find and connect with people online who understood... because of Facebook, I was no longer alone as I navigated my way forward.
However, being in online support groups can be rather destructive at times especially when you are struggling with your illness or your identity or if you are in a very vulnerable place yourself. Sometimes Facebook can be an escape and safe space for people whether it is sharing/venting with people who 'get it' or if you are wanting to share your story or progression of your disease; it can also be too confronting to some who are finding it difficult to come to terms with their own prognosis or are using Facebook as an escape from their reality and it can feel like your disease is everywhere you look.
For me, I have experienced the latter quite often and especially of late.
I log on to Facebook to just catch up on the happenings of family and friends, when I get a notification of someone posting in the group or see a post on my newsfeed; It is a post that someone from the group has died from the disease (that is going to be responsible for killing me too one day) and it got a little too real for me to handle because it wasn't the first post of that day and it wouldn't be the last.
Somedays when there are reminders of my reality when I am already in a vulnerable state is really hard to come to terms with.... I am not in denial that this disease will not kill me as I know it will, but when my resillience is low is when it feels like everywhere I look all I can see is reminders of the disease(s) and death.
It is moments like these where I remove the notifications of the group and hide them from my newsfeed, at least until I am in the mindspace where it isn't taking over my life - especially my online life - as I need to be able to feel safe. This is my way of self-care.
At times it is admitting that I need to feel safe from myself and the thoughts within.
But just because you are in these online groups of your own community, doesn't mean it has to rule over your life. You don't have to be in these groups to know everything to say to everyone, as there isn't always the right thing to say (and it can get exhausting REAL quick). It is okay to be the member who actively listens to people when they need to vent or you can be there to help celebrate their wins by simply liking their status to acknowledge it, knowing that one day it could be you who needs to talk and just have someone who gets it listen without necessarily saying anything.
It is up to you how you find value in support groups, remembering that you'll never truly be alone and that when you need help you have a village to help you can be a huge comfort on your journey with a rare disease.... I know it is for me.
Prior to 2010, I had never heard of FAP or that young people could get bowel cancer afterall my dad was only 39! My doctors had informed me that I was their only patient with FAP and only known case in the area (I later in 2016 learned that there were another family), but in my feelings of isolation and desperation for answers, I came across groups on Facebook where there were other members who either had FAP themselves or had a loved one living with it and joined. The group was all over the world and I spent time learning about others' epxperiences so that I had a better idea of how things would be or what to expect.
Then in 2012 my dad died, later that year I learned that I had early stages of bowel cancer and would need all of my bowel removed. I was told I needed a permanent ileostomy and found myself feeling alone again. I was given material about life with a stoma, but it all related to being over 50 which I as a 21-going-on-22-year-old could relate to.
So I started my blog to try and inspire other young people with a stoma through being ostomistic, a word I stumbled across one day when I tried to say optimistim with a stoma. I began writing blog posts about my journey, tips and tricks I had found, and also using my platform to try and empower others to make better decisions for their health through raising awareness.
I mostly assumed people were reading it as my stats told me so but ocassionally someone would comment or contact me to say thank you for helping them, which helped me to feel that all this was worth it and wasn't wasting my time.
Then one day it lead me to one of my best friends who I later realised I couldn't imagine life without her, probably one of the greatest things to come out of my blog journey.
I later had this idea to create an online magazine for young ostomates as a collaboration between other ostomy bloggers, ostomy businesses or ostomy professionals to help deliver content that is relatable for young ostomates to help them to navigate life with an ostomy. This officially launched earlier this month and has been well received worldwide!
But while my rare diseases have altered the life path that I had envisioned for myself, it sure has given me the empowerment to take back control of my life and to look for the opportunities in each day. I wouldn't have started my blog, an online magazine or aspiring to be a inspirational/motivational speaker.
By not letting my disease define me, I was able to find the real me... and I have learned to love myself and find self-worth which was something I never had before.
I am not my disease(s)
I am rare
I am me
and therefore I am unique!
p.s what is one thing you have learned as a result from your rare disease?
Saturday, February 18 2017
One of the ways I got through my teenage years, was with the hope that one day I would meet my prince charming who would make me feel like a princess, his princess. I romanticised every encounter or relationship I had, always invested in that perfect rom-com moment where I fell in love and lived happily ever after.
My friends thought I was just setting myself up for disappointment and yet again heartbrake, where they would be needing to pick up the pieces and glue me back together... my friends were good like that. They also became rather protective of me too.
So fast forward to 2009 (18), where I desperately needed a laptop as mine was drowned in the (then) recent floods and was hard to keep up with the demand of uni assignments when you didn't have a laptop.
I headed into my local electronics store, walking past the door guy who looked more focussed on watching the latest movie that was showing on the massive LCD TV's that were covered with signs that made you think it was a not-to-be-missed sale, never to be repeated. I walked past the out of service vending machines and an independant ATM machine, one of those "we will charge you $2" to proceed types. I walked through the camera and telco departments when I finally found the computer department.
I wasn't sure what to do, since this was my first "big girl" purchase without a parental unit chaperone. I just stood there lost and staring at the 50+ options of laptops in front of me, confused as to what do I do next.
I wasn't standing there long when this salesman approached me. He was fairly tall, which wasn't a hard thing to notice since I am 5 foot 2", was rather skinny and wore an old set of glasses that looked to be 10 years old. He seemed shy, yet when he spoke about computers it was as if he just looked alive with passion; and there was this look in his eyes when he spoke, that you could trust what he is saying as the truth and not just a sales pitch to try and close the sale... he was really genuine and honest.
Even his attire and how he presented himself made me feel he was humble, down to earth and kind of daggy, which I liked; he didn't feel pretentious at all... just genuine what you see is what you get kind of guy and I admired that. He wore a black collared work shirt that had these weird pleats in the side with a yellow panel (I would later learn these were a massive pain in the ass to iron), the jeans he wore were a light denim in colour and he rolled the bottoms of his jeans up so they sat around his ankles.
I had this immediate sense that he cared about the customer, in a way that he didn't want you buying something you didn't need and he kept trying to talk me down from the higher end of scale laptop that I wanted but didn't necessarily need.
However, as a broke and unemployed uni student I thought I would try my luck at financing a laptop since desperate times called for desperate measures. I was falling behind in uni, so I was willing to consider any avenue possible to get a new laptop and get back on track.
So it wasn't very surprising when I was in fact declined for finance, I even went so far as to try EVERY way possible but I was out of luck.
I didn't want to leave empty handed, so I worked up the courage to ask for his number, which without hesitation refused and said something like "it's against store policy as you applied for finance if I were to take your number". I called bullshit, but he still refused.
But I was utterly confused as to why, I felt we had hit it off. We had chatted and laughed for hours while I attempted to finance the laptop, even had our own inside jokes.
There was just something that in all his honesty, that I felt was sexy in a guy... considering every guy I had met to date were douches who were either so focussed on looks and appearances, were the dangerous boy types who were forbidden (which made them more attractive), were the sporty jock types who prioritised their sports over your relationship, or the mum's boy types.... so it was rather refreshing, and a welcomed adventure when I encountered this kind, funny, considerate, nerdy and genuine guy.
But it ended there.
For the next 3 months I would try and utilise the shared computers at university and applying for credit cards or scholarships to try and help me to fund the laptop, but often I would be waiting for a long time for my turn for the computer in a line.
When I did win a scholarship at the begin of semester 2 I dreaded the thought of returning to the store and in the event that the sales guy remembered me it would be so humiliating. So I decided to dye my hair a purple/burgundy colour and to cut it really short in the hopes that he wouldn't recognise me.
I felt so confident and headed into the store, meandered the recognised path towards the computer department and was rounding the corner into the IT section when he saw me. Instantly dreading this and realising it would be rude if I just pretended I didn't see him, I walked towards him and smiled.
He smiled back and said "It's Talya, right?". Muttering a few curses, I replied "Umm yes, it is". He continued by saying "I told myself if you ever returned that I would get your number, I have regretted it every day since".
So that time I actually left with my intended laptop, his number and the hope that maybe this dream of falling in love might come true afterall.
Just like any rom-com movie it isn't always smooth sailing and theres a few bumps along the way, often tragedies, that can bring two people closer together or can tear them apart... and that has been our story, one heck of an epic love story that should really become a feature film.
We started dating knowing full well that a month later I would be having my first brain surgery, which led to multiple surgies and a 3 month hospital stay and also our engagement at just 3 months together.
On our 12 month anniversary we were married, it was an intimate gathering and budget friendly, but it was also simple in the way that there was no fuss and it was a low-key affair surrounded by those we love dearly. It was a day where we wanted it to be just about us.
But we have faced our fair share of loss and stress: misscarriage; diagnosis of my dad's cancer and learning I inherited the gene; being held up at work and struggling to come to terms with anxiety and a diagnosis of borderline personality disorder; finding out that I have severe stage IV endometriosis and as a result I am unable to have children; a week later learning at 21, I have early stage bowel cancer and would need surgery to remove my bowel; months later had surgery and my first ileostomy surgery was had, survived being close to deat and learned to adapt to life with a stoma; getting severe recurrent pancreatitis rendering me in hospital for the next 12 months; discovering a large tumour where my bowel used to be; thyroid cancer and subsequent thyroidectomy, again close to dying; learned I now had another tumour that was growing rather quickly; started chemotherapy and spent more time in hospital which led to tumour needing to be removed as it was dead and my body was decaying; resuming chemo; learning I had 2 large blood clots; a new tumour discovered on my ovaries; chemo stopped and entered palliative care.
I am sitting here in tears, as I have been moreso the last 6 months, as I just don't know if Russ is going to be okay.
Russ has autism and if it has taught me anything in our relationship of 8 years is that he doesn't cope with change well. We moved house and it took me 12 months of building him up for it as change is unsettling for him, he is only just settling in with his new routine and it has been 5 months. He even had his learners for 20 years and got his p's last year and I was so incredibly proud of him, it gave him independance and took a lot of pressure off from me and meant that I can focus on my pain management and not needing to worry about driving.
He told me recently that he is so proud of himself and that he appreciated me being patient over the years to research how to help and encourage him to embrace change. I read up on autism parenting blogs to help, even though he was an adult I found some of their advice helped me.... I learned patience and to try and do things differently.
He also doesn't cope with his emotions very well, he struggles understanding what to do with them and death usually leads him to shutting himself out from the world. He doesn't know how to deal with what he is feeling and as a result can lash out or just become more recluse than he already is... I saw this when my dad died.
I have started studying counselling so I can learn coping mechanisms to teach him, I know he won't be okay as much as I wished he would be, but I am trying my best to help him.
It's rather upsetting and stressful feeling all this guilt that I have, that we have built the most incredible lives together and lived the most epic love story and it is going to come to an end. I worry about him financially and if he can manage.
He conversed with his boss yesterday about what happens in the end when he needs time to grieve what is available. He has been so worried that he might not be ready to return so quickly after my death because he has no more leave and would take leave without pay and as a result would not be able to pay the mortgage... and he has been rather anxious about all this.
So I spent so much of last night crying, because I feel guilty.
I feel guilty that he is having to worry about all this, that he has limited time to grieve before having to pull himself together to go back to working, all because I didn't have life insurance. It is one of my deepest regrets and I feel like I am irresponsible as a result. I only have under $3k in super too. Even on our homeloan the bank wouldn't cover me with insurance, 'cause terminal cancer and all the credit cards are in his name not mine so that won't even be a relief.... it is such a worry and stress.
I just hope he will have support, I imagine he will in the initial week, but I worry what will happen after that.
Saturday, February 04 2017
The moment is here - The magazine was born!
Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.
When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!
I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!
I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.
Thank you for sharing in this exciting moment and happy reading.
ISSUE 1 | The Ostomistic Life eZine
I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)
If you love it let me know.
Work on issue 2 has begun, click here to sign up to receive the next issue straight to your inbox. For articles I am looking for or if you have a topic you want to discuss please get in touch. Some ideas can be found via the pinned post below or on the facebook page.
Friday, January 13 2017
It is a little over 2 weeks until the launch of the first of it's kind and a very needed eZine aimed at helping young people with an Ostomy, it is launching on 28th of January.
There is some pretty amazing content that has been generously contributed by Ostomates and proffesionals all around the world with topics that will help a young Ostomate to navigate life with an Ostomy, so I am pretty excited about this and I know I am not alone either.
I have been working with the incredible Vanessa from Becomingness who has contributed some delicious and ostomy friendly recipes (stay tuned for the launch issue to find out more).
But it got me thinking, as there is interest all around the world with the eZine, what if they measure out ingredients in a different manner?
So rather than the hassle of readers needing to convert different measurements and to prevent any confusion, I decided I would design an A6 conversion reference card for different measurements.
You can either download and print at home for FREE via clicking here
I hope you enjoy this quick reference card I designed, and don't forget to sign up for the eZine ahead of the launch to be the first to read it! There will also be some pretty cool prizes up for grabs too!
Wednesday, November 30 2016
When I think back to my teenage years, one thing that was a big part of my life was reading the Dolly magazine.
Not only did it come with the occasional FREEBIE, but the information you learned was second to none... and you can't forget the excitement of tearing open the sealed section as if you were some rebellious girl eager to know what was such a secret, then when you realised you turned red in the face or giggle out of embarrassment.
I started getting Dolly pretty early on, I was 9 when I got my first period and I guess it was more awkward for my parents to have to talk to me about that sort of stuff, so I was given a magazine each month.
There was some pretty helpful articles, awesome competitions, projects to get my craft freak on, as well as Dolly Doctor.
I don't know who Dolly Doctor was, but I always imagined she was the older sister I never had who was cool, collected and held your embarrasing questions under her lock and key. I was thankful to those who wrote in with their issues as I learned a lot, and a couple of times had my questions answered under a guise of course.
I liked reading the embarrassing moments, as it made me feel less awkward and less alone. I remember this one girl wrote in about her horrifying experience of when she wore white pants for the first time and was on a date at the movies when she got her period and her white pants were destroyed.
It taught me that I should keep a record of when my period was due so that I could factor in things like swimming attire, wearing shorts or skirts, or wearing white clothing.
Unfortunately my school dress was white and it was humiliating when I had an accident.
The freebies were sometimes pads and was nice having some you could try out and see what suited me as opposed to wasting money by buying different brands and types.
I remember all the helpful advice received over the years like relationship advice, how to help mend a broken friendship, how to help your acne covered skin, how to make the latest fashion trends, different ways to wear your hair and how to know when to ask for help (mental health or eating disorders etc).
I feel a little saddened for the future teens who won't be able to experience the thrill of flipping through the magazine and tearing open that sealed section. I know there will be a digital version, but the experience won't be the same. Nothing compares to the sounds of flipping a page or the smell of a brand new magazine.
I remember when I was in year 9 my parents wouldn't buy me an issue because we couldn't afford it, so I went to so much effort making my own magazine called 'Rocks Teens' filled with celebrity goss and stories I had written. I even made up my own version of Dolly Doctor 'Dr Rocks' where I made a copy to share with my friends. It was a lot of work but I really wanted to be a writer and loved graphic design even back then.
Dolly, you will always remain a cherised memory of many teenage girls, especially those socially awkward introverts (like me). Thank you for your service for almost 5 decades!!
Friday, November 25 2016
Earlier this year, I was on a Canteen camp for members aged between 18-25. At 'camp' we not only talk about cancer but Canteen organises various workshops that help to teach us valuable skills, and often skills that we can implement in our lives right away.
Some workshops are about stress management and coping mechanisms, others are about learning to cook healthily on a budget (first time ever making hommus) and the ladies from Newcastle Permanent came to talk about budgeting and to teach us tools to succeed. I really enjoy all this money related.. I love saving money, I love frugal shopping, I love bargain hunting but I also love spreadsheets and budgets (yes I heard you yawn), I really do miss my days working in finance at a bank.
Another workshop we had was about gratitude, creating a gratitude jar and telling people when/whom/why we are thankful; we also talked about what makes you happy and the value of people and memories over materialistic objects.
We were introduced to the Science of Happiness, which was a video where several people were asked to think of someone they are thankful for, to write down why in a letter and then they were asked to ring the person to tell them.
The study concluded that people who were grateful or showed grattitude in their lives were in turn more happier than those who didn't.
I highly reccommend you check out the video on youtube by clicking here, it is such a heartfelt experience... well for me it was anyways.
I have been feeling a little overwhelmed lately with my life and been struggling with facing my mortality at 25, struggling financially, but I also have felt a little lost around my self worth and value. Now, I don't want you to roll your eyes and think I am asking for sympathy or being an attention whore, I'm not trust me, I do have an important message if you keep reading on.
I decided to join some of those blogging groups where you learn how to make a lot of money blogging, kinda regret joining as it has me feeling more pathetic than I was before I joined.
Now blogging for me hasn't always or ever been about the money, I blog because I want to help others so they feel less alone, but then there are costs to running the blog like hosting fees ($30 a month) and sometimes I wished I could find sponsoring to not only help cover the running costs of the blog, but to also give me a little bit of pocket money.
So in this blogging group a coach talked about how if your blog isn't gaining the attention of sponsors or advertisers than you must be doing something wrong and that there is no value in your blog if people aren't wanting to advertise that the readers (you guys) are being sent the message that it isn't worth it.
So you can imagine I felt pretty embarrassed, pathetic and wondered is it worth it all?
So fast forward to this week, where I got an email from a reader who said:
I tell you what, I re-read that email several times each time with tears.
I felt pride, self-worth, appreciated and needed in the first time in a long time, and it was something I really needed to hear. While I see so many people reading my blog posts, I never know if anyone gets value out of them or if I am actually helping others. So it made the world of difference being told thank you.
I also realised that money isn't what makes MY blog valuable, it is me.
So it got me thinking just how good it feels to be told genuinely that someone is thankful for you or something you did, and that person also feels happier knowing they have made you happy.
So if there is a blogger who has helped you, please do ocassionally stop by and leave them a comment or an email thanking them, it made such a difference hearing that for me personally and I am sure other bloggers would appreciate it too.
While I have been feeling down lately that I didn't have much of a legacy to leave behind, I realised that this little blog of mine is what I am leaving the world with.
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel a little appreciated too.
Thursday, November 24 2016
I took the plunge this past week, and did something that has been on my bucket list for a while now.
I tried a CRONUT, and it was every bit mouth orgasmic as you would expect. Seriously, if you are in Woolgoolga (NSW) be sure to stop by The Next Phase on the main street for an experience you won't forget in a hurry.
But I did something even more terrifying.
I enrolled in a Diploma of counselling online, not that I have enough going on (cancer, facing mortality and living life).... but when I enrolled, before being accepted, I had to write why I wanted to study counselling.
Long before I was told that my disease is at the end stage, I wanted to study counselling and hoped that one day Feeling Ostomistic would branch out into counselling sessions online (via email, skype) or in person... so when I got my prognosis I made it a personal mission to study it before I cark it.
So there are two reasons why I want to study counselling, and both are pretty important to me:
#1. To help you:
#2. To help my husband:
So that is my two reasons behind enrolling in the course, the online college was pretty impressed with my maturity and selflessness... I really do try to lead as much of a selfless life as possible.
I just always felt my purpose in life was to help others, I just hope I can.
Monday, November 21 2016
I have never been much of a morning person even before I got sick, and the last year or so I generally don't start my day until later in the Morning.
Moreso lately, my health often sees me in bed until mid afternoon.
So it can be understandable that I might miss the occasional knocks at the front door, especially if I am in a deep sleep, or there's been many times where I have been in pain and tried to jump out of bed (read slowly stagger) to only get to the front door and missed getting to it in time.
It is so FRUSTRATING!
I always thought there should be a doorbell that can connect to your iphone and alert you to when someone is at the door, or better still if you could communicate with them.
So Russ and I in planning our house, we thought about issues like this and considered having an intercom system set up near our bed, but it was looking to be rather expensive.
But alas, imagine our delight when we found a doorbell at our local JB HIFI store that not only allowed us to get push notifications on our phone (providing our phone isn't on silent like last weekend where we didn't realise my mum was outside waiting for over 15 minutes), but also has video and audio too (acting as a video intercom)!
It has been such a help to me since we got the 'ring' doorbell.
Most of the time when I get out of bed my stoma is leaking, so it is rather difficult to try and get to the door in time with a leaking bag. So I have found it helpful when I am dealing with a bag leak or if I am in bed too sore to get up just yet, that when someone rings the doorbell I can see who it is and talk to them.
Often it is the postman with a parcel (not that I shop online a lot, but I get my Xmas shopping out of the way early and online) so it is convenient to say hello and to ask if the parcel needs a signature. I just explain that they can leave the parcel at the door for me and I will collect it when I can get to the door.
I also have spoken with the parcel lady before about having cancer and quote often it takes a moment for me to get to the door.
But it is also good having this doorbell when there is unsolicited doorknockers and I don't have to feel rude for wanting to slam the door in their face. I can just open the Ring app, see who it is and talk to them.
They also have a security camera system available too (we have a couple of cameras set up) where if there is motion in the area you get alerted to it, or you can live stream the video if you are out and want to check up on the house (or the kids) and you can also talk to and hear noises going on.
They are a little expensive, but for the convenience and amount of times it has helped me since we moved in over a month ago is significant. For me it is a tool that is helping me avoid hurting myself getting out of bed in a hurry.... and to give me a little bit of dignity in the mornings too.
DISCLAIMER: This is not a paid or sponsored post, I was not asked to write about the product by the manufacturer or by JB HIFI. I am also not biased on my opinion or experience because it was purchased from my husband's place of employment. I nor my husband receive any benefit by me sharing my experience on this product. This view is purely my own and I am sharing in the hopes that others (like me) who have struggled in the past with trying to get to the door in time, might now have a more convenient solution.
Sunday, October 23 2016
National Bandanna Day is coming up, and is this Friday the 28th of October. It is a day where people nationwide are encouraged to purchase and wear bandannas with the proceeds raised to support a charity called Canteen. You can read about the work they do by clicking here, or to read how Canteen has helped me personally, click here.
In the lead up to National Bandanna Day, I was approached by Canteen to be an ambassador (always wanted to be one) and talk about my cancer story and how canteen has helped me with various media outlets.
One of these outlets was a local ABC radio station, and I had always wanted to be interviewed on radio so I jumped at the chance.
Russ, my husband, was present with me the entire time I spoke and after I ended the call he praised me for how articulate I sounded and that he was proud of me.
I was a little nervous, but I made sure I was prepared.
I thought I would share 7 tips that helped me to stay calm and level headed during my radio interview, and I hope that they too help you.
#1. Find somewhere quiet to sit
#2. Remove any distractions
#3. Know your stuff, and know your 'why'
#4. Don't have a piece of paper to read off of
#5. Have a bottle of water handy
#6. If able to, ask what questions will be asked
#7. Know the name of your interviewer
I know these are only a handful of tips, but these really helped me in preparation for my interview and I hope they help you. Feel free to add your own tips in the comments too.
Also, keep an eye out on my facebook page for when the interview will be aired as I am not too sure yet.
P.S Not sure how to wear your bandanna or how to fold it? Click here for a HOW-TO printable guide
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
Wednesday, September 21 2016
This is not a sponsored post, we purchased the car using finance through the car yard
When I entered palliative care they asked me what would make my life more comfortable or aid me in living a better quality of life.
On this list was:
Of course only the pain management and wheelchair were something they could help me with from the above list.
However, I knew a car that was reliable, comfortable, easier to get in or out of and that fits the wheelchair was something of a priority for us and I knew it could make the world of difference to my ability to get out and about.
Our need for a new car:
Off I went to the car yard and found this beautiful 4 year old Ford that looked and drove like an XR6 (without the price tag), it was $20k and it was so fast! I felt so sexy when I drove it and I liked the compliments I got too. I loved the colour of the car too it was this blue with sparkles and a purple hint.
It was a nice car..... until things started going wrong.
A year later I had realised it was probably THE biggest regret of my life!
This car was incredibly low, like so low that it scrapes on every bump and you feel it, I couldn't even drive it down/up my driveway at every previous address over the last 8 years as it scraped the bottom of the car and I mean that horrible-cringe-worthy-type-of-grind it sounded so bad.
PLUS the fact that you can't drive over 100km/h or at the 1 hour mark as you had to pull over for 15mins turn the car off and wait for it to cool down... basically the car is driving on 4 out of 6 cylinders and told by several mechanics that it was an expensive things to repair and I didn't have thousands to just spend on a car not worth $1k. The car wasn't reliable, it wasn't safe and we needed a new car - but we couldn't afford it.
Back in 2012 we tried to upgrade to a Hyundai ix35 as it was higher off the ground and had sat Nav, Bluetooth etc. but we weren't in a good financial position to get a new car and our ford wasn't worth what we hoped or needed for a trade in.
So we kept waiting until we were in a better financial position which meant reducing our debt, working on our savings and hopefully getting our home loan.
Our existing car I haven't been able to drive for years as the steering wheel was low it sat on my belly which meant every time I went over a bump it was quite painful.... actually anytime I went over a bump it hurt so much. I no longer enjoyed driving and it became a chore, I would always ask Russ to drive if he were able to as I would be in tears most of the time. The car also was so low and was getting harder for me to get in and out; it was also hard to get the wheelchair in/out too, as you had to bend down low and it was getting too strenuous on Russell's back.
Fast forward to August 2016, we were getting ready to move into our new house and we went to the car yard to look at their i30 and i40s all the small cars for Russ to drive to and from work. Our car was no longer reliable and I was worried about Russ breaking down on the way to work, so something that gave us confidence in getting Russ to work safely was a must, as well as a second car could be handy so I wasn't stranded at home in case I needed to get to the shops or to doctors/hospitals.
We told the car yard how ideally we would love an ix35 but they were no longer manufactured and the replacing models "Tuscan" were way, way, way out of our price range - so we knew we could at least afford the smaller i30 or i40.
Finding the perfect ix35:
This was our one chance for finding a near new ix35 without the price (of a brand new model), so we were SO excited. Hardest part was keeping the secret until we got our keys.
We have debt to our eyeballs but we feel deep down that this truly is the best decision for us. A car that will assist me in getting out and about more comfortably and easily is so exciting!
I drove the car home, I haven't driven a car in over a year.... I did almost blow the car up! No, I am serious.... never making that mistake again!
Keep your eyes out for the future adventures that await! I am actually rather excited now for my future, despite drowning in debt I do hope we can manage. It makes me exciting thinking of all the fun and adventures ahead.
We can't wait to see what adventures unfold or the conversations this car will bear witness too.
Tell me in the comments below what the most memorable car you owned?
Monday, September 05 2016
Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.
While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.
And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.
☟ ☟ ☟ ☟ ☟ ☟
My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:
I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.
I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.
I know I’m not going anywhere.
The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”
Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.
Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.
Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.
We are only as good as our word. I gave her mine, she gave me her heart.
And you’re right, I am a good bloke......
Because I met her!
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.
*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
Sunday, September 04 2016
I often wonder if my dad's bowel cancer had of been detected early on, would he still be here today? I believe that he could have been, especially if it hadn't metastised yet.
I also wonder, would he have needed a stoma and if he would have been okay with needing one if it meant he would still be alive.
Then I imagine my dad and I twinning at being stoma bag buddies, and sharing a humour about life with a stoma that only we would understand and appreciate.
My dad was one tough bloke, he was WAY tougher and stronger than I could ever be. He hardly complained about being in pain, and although you could see in his eyes he was exhausted, he would still make sure that he was there for us kids.
But, I know how hard living with a stoma can be, especially in those first few months.
I know if my dad were given the choice of life with a stoma or death he would have opted for living, he would have done anything for his kids. He would have made jokes about having a leak in public, and gone "well, fuck. Shit happens aye".
He probably would have even said something like "don't scare me like that... I shit easily".
But something totally corny and dad jokey would have been "talk about de ja poo... I've heard this crap before"... or "Did you know that diarrhea is genetic... because it is running in my jeans".
Dad was a true comedian and could turn any situation into one that could make you laugh... I think he would have continued that humour and his positive outlook through having a stoma too.
I like to think that is where my strength, ostomism (optimism with a stoma) and humour come from.... and in a way I feel that he helps me to get through each day by asking myself "what would dad have done/said".
Even after his death my dad continues to inspire, motivate and give me the strength I need to get through my day.
Happy Father's Day dad.
Tell me, is there something that you inherited or share an interest with your dad?
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
Saturday, September 03 2016
This blog post was written as part of a competition sponsored by ProBlogger, Shoebox Timeline and The Good Guys.
When you meet someone and after they've learned that I am a blogger, one of the first questions they ask is "why did you decide to start your blog?".
I smile, and ask how much time they have.
In short, I started my blog because I was 21 and just found out that I had early stages of bowel cancer and that I would be requiring surgery within the coming months to remove my entire large bowel and that I would live the rest of my life with an ileostomy (an opening in my stomach that essentially becomes my anus and does what anus' need to do).
So I was struggling to understand how I could live life as a young female with a stoma, and how will it change my life (other than how I now go to the toilet). I was scared, I felt alone and in all my research I could only find material and resources aimed at the older & retired generation.
I had questions about being intimate, sexuality, body image/confidence and even fashion. But I either felt embarrassed to ask my doctors or nurses or I was thinking "they're not young they mightn't understand the importance".
I decided to change that, I knew if I was struggling to find relatable content then surely others must be too.
I microblog on my Facebook page as well as blogging here and I talk about issues with my stoma such as skin health, dealing with leaks or ways to help make my life living with a stoma a little easier; I share fashion tips I have learnt along the way as a plus sized young female with a stoma; I talk about body image and addressing people's comments when they tell me that I am "gross" or asking "how does your husband still love you"; and I also talk about ways to help make each day better, such as how I add happiness into my day.
I also write about other areas of my journey or life that might help inspire others who are chronically sick, or have a loved one who is in hospital or isn't sick but wanting to feel motivated to make a change in their life; I wrote a post for my brother's doing year 12 and about the pressure placed on their exams and that my results didn't dictate my future; I shared budgeting tips and things to review when on a budget; I share tips on self-care and how being sick affects more than just my physical health; and I even shared how I had a wedding for under $2500!
I created a Shoebox Timeline, which is a visual of the why behind my blog and sharing the various topics/awareness raised through my blog and also on social media (Facebook and Instagram). What I loved about creating this slideshow was it allowed me to show in a creative and fun way just some of the important conversations we've had. Check out the video below or head to my Shoebox Timeline to view too.
My blog name came about one day when I was talking about needing to be optimistic with a stoma. I had gotten tongue tied and instead said 'ostomistic' and so I realised it had to be my blog name!
So I started my blog and shared my story openly, and I know it was the best decision I made as so many people have connected through my blog and have told me they don't know if they could have gotten through this journey without my blog.... which is touching, and is the reason I keep doing what I am loving.
The other part of my inspiration to writing my blog, is that in 2012 I lost my dad to bowel cancer. He was only 41 when he died and he didn't seek medical attention early enough, and when he finally did get in to see the doctor he wasn't taken seriously and was told "you're to young for bowel cancer, just take these tablets to stop you being constipated". He wasn't constipated and he hadn't eaten in months as he had a large tumour blocking his rectum. But if he had of seen a doctor early enough, there is a chance he could still be here today.
I am a strong advocate for bowel cancer detection and screening, and I try and empower others to get checked, because if bowel cancer is detected early enough it can be treated. However, only fewer than 40% of cases are detected early. I hope that through sharing this it could help save a family's heartache of having to say goodbye to their loved one too soon.
As my journey changes with each new cancer diagnosis or finding out that I am 25 and terminal with cancer, I haven't lost my passion or vision. If anything, it just makes me more determined to share what I know and to help as many as I can before I pass on.
I know that as my blog changes with my health, that it could be upsetting for some readers when facing with their own mortality, but if I focused on the few that I could be upsetting and stopped writing about that issue then I could be hurting a lot more that need to read my words and hear my message.
Through my blog I have learnt a lot about myself, but I have felt a greater sense of self-worth and accomplishment. I have even presented talks at local stoma conferences where I was asked to share life with a stoma as a young person, it was a room filled with mostly older people, and they all said they learnt a lot from my talk.
There have been times where I felt uninspired or unmotivated to write or blog, and questioned if it was all worth it... there have been times where I felt like giving up. These moments were usually at a time where I was going through some health issues and having a hard time coping, and I hadn't received comments on my recent blog post and wasn't sure if anyone was finding value in it.
Then someone will reach out to my facebook page or email me with a question or an issue and telling me they need my help. It is in that moment that I realise that I can't throw in the towel as my blog does matter and I am making a difference to someone's life. When I am told thanks for helping them it helps to inspire me to continue sharing my voice.
I believe that life gives us many opportunities, we just have to be willing to look for them and ready to run when we find them. I turned a lonely struggle into a resource that has been used by many patients and their families, as well as university researchers using my patient's perspective to form their thesis'.
Do share in the comments below what inspires you, or if you blog too, what inspired you to start blogging?
Friday, September 02 2016
I am often asked and often daily, how do I remain so happy or positive despite everything going on in my life.
I am a big believer in self-care practices, and one of the tools incorporated into my day-to-day routine is doing at least 1 thing for me or something that I know will make me happy.
I also designed myself a 2016 calendar, with each month a different quote or positive message to myself. I look at this daily and it is pinned above my computer as a reminder of not only what needs to be done that month but a positive message to live by too.
A big part of my bucket list (also calling it my happy list) is mostly things that I want to achieve because I know that will make me happy.
But I also know that no matter how bad today gets, the sun will come up tomorrow and it is a fresh new day.... there are 365 days in the year and that is 365 opportunities to make yourself happy!
So I thought I would share at least 5 things I can do to make my day that little bit brighter.
#1. Learning to say no and knowing my limitations or delegating:
#2. Crafting or creating:
#3. Writing or journalling:
#5. Do something for someone else:
Bonus - Do something for me:
P.S Tell me, what do you try and do that makes your day happier or brighter?
Friday, August 26 2016
Today, and as it seems a lot lately, I am constantly met with doubt and disbelief when I share my story/prognosis or the fact that I am 25 and terminal with cancer. It almost always makes me feel like people assume that I am making it up.
For the past year my husband and I have been working on a new segment/section of my blog called 'The Ostomistic Husband' which will be posts and topics written by him and in the hopes of showing the perspective of how a spouse feels or views their loved one's illness.
So, take it away Russ!
☟ ☟ ☟ ☟ ☟ ☟
All too often I have Talya tell me how annoyed and upset she is because someone has just told her, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.
I’m sure you have heard the same from someone you know with an illness; it seems to be all too common.
I myself believe I have a mild autism which makes me: crave routine; shy away from human interaction; find it difficult to create and nurture relationships as I don’t readily say what I feel inside; have processing issues regarding certain tactile sensations, etc.
These things are not visibly apparent and are not easily discernible even when you are interacting with me.
Why? Because I’ve spent a LOT of time learning how to go about my day, to fit in without drawing attention to myself unless I feel safe to do so. As such, it pains me to hear that Talya is being judged by her outward appearances and not by the effort she makes to display her frightening lifestyle in a manner palatable for those around her. She is always trying to alleviate others…
I think that is probably the major force behind the “You don’t look like you’re dying of cancer so it mustn’t be that bad” line.
No-one wants to admit that a young person as outwardly vivacious and spirited as Talya could be dying inside, because that means that they too, may have something as monstrous within them (and not show any signs).
After all, they look fine. Don’t they?
Talya and I see this very differently.
She feels that people are constantly attacking her; sometimes bluntly and sometimes in a back-handed way.
I feel that people are constantly protecting themselves; outright denying the facts about her health (in fear for their own mortality) or suggesting that it can’t be as bad as all that (simply hoping that it could be true, were they in that position).
People don’t want to accept change, they are afraid of the unknown. I get that, more than most.
In the private studies I’ve made on human nature, and by simply watching people react to a situation then react to their own reaction, I believe that people are generally afraid inside (and what a perfect evolutionary trait in self-preservation that is). Some have learnt to deal with that most primal of instincts internally, while others still say, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.
All in all, I feel for Talya a great deal in the aforesaid circumstances but I remind her that she is simply better at hiding her pain than some others are at dealing with their fear.
I say, “If they want to blurt out hurtful statements, without understanding what you are going through, to make themselves feel better, that’s on them, not you. But please, see it from their point of view too”.
No-one wants to live in fear.
About the Author:
*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.
Friday, August 05 2016
One of the hardest parts about being terminal and knowing your life will be short lived, is knowing just how much you will be missing out.
There will be plenty of birthdays, milestones, graduations, weddings and babies no doubt...
But it has really been upsetting me lately knowing that I will be missing so much, and that is hard to deal with.
I also know that if I leave Russell up to the task of buying special gifts for after I am gone, I know not only can he not choose a good present but he is never organised enough to make sure a present is arrived in time.
Heck, I start Xmas shopping around April/May each year (yes I already have presents organised already).
But part of me feels that I should be organised now and start buying gifts and getting cards together for their birthdays, future babies and weddings... but will that be creepy? Like will they be creeped out that I am giving gifts beyond my grave?
Hardest thing is I can't find like a 'etiquette to dying' handbook to tell me what I am meant to do and organise before I die... so I am kinda just winging it. (trust me I have looked... wait maybe that is my e-course or e-book idea?)
I wish everyday that I wasn't dying or that I can continue to grow old with my husband... I wish I wasn't given this shortened life sentence and that I could find a fairy godmother to grant me 3 wishes with one being 'to be cured'... but that only happens in fairytales and I am no Cinderella.
I really want to be here for Russell's 40th in 4 years, but I threw him a pretty cool 35th party (but I didn't tell him it was because I might not get to throw him a 40th). The party was under the disguise of 'half way to retirement' party.... but he had fun and his friends all had fun too. It was a themed party and everyone was to dress up as something they wanted to be when they grew up.
Was a lot of fun, and he asks me if I will throw him another party and I just reply "We'll see" and put on a smile and hold back the tears. I am considering a housewarming party, but we'll see.
Like I know I am not ready to fall off the perch just yet, and I hope I at least have another year or two but I am the sort of person that needs to be prepared and needs to be organised.
But tell me, if you got a gift or a card from a loved one beyond their grave, would you be creeped out?
Thursday, August 04 2016
Back in November 2011, I had not long purchased the latest iPhone 4S and the exciting thing was that there was now this app on your phone that you could enter in your starting destination and your concluding destination and it would find the route for you and verbally navigate you to where you needed to go.
It meant I no longer needed my in car navman, and there was now more room in the cigarette lighter part thingy (insert proper name here) and I could charge my phone while travelling.
So we were headed off to Bathurst (NSW west of Sydney) for one of my best friend's wedding, and we had never been there before so we needed a little bit of help from the nav on my phone.
I entered in our starting point and the hotel details (we were staying at the hotel RIGHT ON THE BATHURST 1000 TRACK.. you know Mount Panorama.. gees listen to my inner bogan coming out) and it brought up the route we were to take.
As we had never travelled there before I didn't question the route offered and just started driving, stopping at Karuah to refill the tank.
We got just past the Newcastle turnoff, and were at this huge roundabout that says "Sydney/Freeway Left Lane" and "Maitland New England Highway Right lane".
My nav told me to take the Maitland New England route... again not questioning it as who was I to tell it how to do it's job.
So we got to Singleton, then we got to Muswellbrook and then we got to a T intersection. The highway continued to the right and to the left was a dirt gravel road.
We were instructed to take this road (the left).
After following it for what felt like hours, we came across a road that had cattle grids all over the road and there was cattle just roaming about. I can't recall where we were but were in the middle of no where.
We kept following all these dirt roads and the occasional tar road when we eventually got to the back of the Blue Mountains... by this point we had been driving for around 8 hours already and I was getting annoyed. There was no service and hadn't had service for hours so I couldn't call my dad and ask for his directions (he was a truck driver and knew his way around).
We eventually found a rest stop (that you had to hike up a mountain to get to) and so we hiked just to try and get service.
I had all these missed calls from my dad wondering how I was and where we were and how far away from Bathurst we were as we should almost be there.
We told him where we were and he laughed and said "how the f$%& did you manage that?" When we told him it was the navman on our phones he said "well I told you technology is f'ing hopeless... you should have used a map and gone via sydney".
So we continued on our travels with the phone directing us, as we had no idea where we were, and we were almost at Dubbo (Wellington) when it took us down through Orange, out through some bush and eventually to Bathurst.
We arrived at the hotel at almost 8PM and 14 hours of driving around the country side.
We were annoyed, we were tired and we had the shits.
On the way home we weren't trusting the navman again and just followed the signs to Sydney then I knew where to go from there.
But what an experience that was! And everytime someone mentions Bathurst or driving out West we say to each other "remember that time our nav f'ed up and sent us through the countryside" and we just laugh.
But we did see some beautiful sites, and haven't ventured back to Bathurst since.
But I am sure I am not the only one who has found themselves on an adventure because of their Nav? Share your story below
P.S if you were wondering, YES I did do laps on the Mount Panorama track.. surprisingly it had only a 60km/h speed limit and even had speed cameras!
Monday, August 01 2016
Last year I heard about this incredible organisation called Share the dignity, which is a charity that helps to support homeless women and women in need when it comes to 'that time of the month'.
Their slogan is "no woman should have to choose between buying food or buying sanitary items", this really struck home for me.
When we often think of homeless or poverty we imagine people living on the streets, in their cars or in refuge shelters. But this isn't always true. You can have a roof over your head and be poor or poverty stricken.
According to the Australian Council of Social Services (ACOSS) there are 2.5 million Australians living under the poverty line, which for a country deemed 'the lucky country' that seems like an awful lot to me.
When the campaigns from share the dignity were being shared around on social media, there were comments that I observed that went along the lines of "that is an exaggeration surely, you aren't that poor that you can't afford pads or tampons or choose between that or eating"... as I said it was the general gist of the conversations going round.
But I know firsthand how stressful and hard it is when you do get your period and you honestly have to make the decision between buying pads or food... because it happened to me on several occassions.
When I was a teenager I felt embarrassed each month to ask for pads or tampons as I knew they were another expense we couldn't really afford (and I felt guilty asking). So when I got my first job I was rather elated that I could take responsibility for myself and I had money to buy pads and other personal care items I needed. I was independant and I didn't have to ask to buy them as I was in control of my own money.
I took living at home cheaply for granted and it wasn't until I moved out of home that I realised that rent and living expenses are so costly!
The day after graduating year 12 (Nov' 2008) I moved to Brisbane and was living in share housing. My rent was $100 a week and all the utilities were shared. I needed to pay for a train ticket to and from work and leading up to Christmas I had a lot of work and was doing okay... then Christmas came and went and the hours dropped to 8 hours a week which was $80 there about. I wasn't entitled to centrelink as my dad earned too much (even though he wasn't financially supporting me, it didn't matter to them). I was struggling to find another job and I was struggling to pay my rent and had to keep borrowing $20 off of a familly member each week to cover my rent. I didn't have money for food, I didn't have money for the train, I didn't have money for pads. I tried to stay at my boyfriend's house through the week so I could eat... it felt so humiliating!
Then my plans to study at university in QLD fell through, and I was offered a HECS supported place in Coffs Harbour so I moved. Centrelink finally offered me youth allowance which was $290 a fortnight. The house I was renting was $145 a week so my centrelink was consumed by my rent. I had to resort to borrowing $20 each week (off of family) so that I could buy food and pay for the bus to uni (I couldn't afford petrol). I tried so hard to find a job but I kept getting knocked back. I was a struggling uni student.
But there were times where I had to choose between food or pads, and it was a difficult decision. I have endometriosis so my periods were always rather heavy and it meant that I needed more than 1 packet of heavy pads each month, and I am allergic to pads but found the Libra overnight pads to irritate me the least (but they were costly)... but for that week that I had my period I was literally living off of those cups of noodles that you add hot water to and it cooks it... there were nights where my housemates took pity on me and would cook extra food that night so I could eat properly.
Then I moved into a cheaper share house where the rent was only $120 a week so out of my $290 a fortnight payment I now had $50 a fortnight. I felt so rich! I didn't have to call up family desperate for $20 anymore and my housemates cooked everynight and were happy if I gave them money towards groceries and they let me eat with them... also meant I had money for pads each month.
Unless you have been in that situation, you don't know how satisyfing and what a relief it feels to know that you don't have to choose that week between eating or buying pads.
At the end of 2009, my situation changed and I moved in with my then boyfriend (now husband) and his rent was only $180 a week so we went halves and it meant my fortnightly student allowance could go even further.
How you can help to share the dignity.....
So this August I ask you when you're next doing your groceries to buy an extra packet of pads or tampons and drop off to one of the Share the dignity collection points, so that they can be distributed to charities such as womens shelters to help women in need to have dignity when it comes to their period.
To find a collection point or learn more about what they do, visit their website.
P.S they also have a #itsinthebag initiative where they ask you to fill a handbag with a list of essential items and it is handed out to homeless women at Christmas. I am working on 3 of these handbags to pass on, these are handbags I was no longer using (and still in good condition) so what a better way to give them a new purpose! Find out more about this campaign here.
Sunday, July 31 2016
For those who have been following along through my mirco-blogging on my Facebook page would know that I recently (about a month ago now) entered into the care of Palliative Care and that my chemo and treatment options stopped.
I will write about that on my blog shortly, just been hard finding the words to say.
But since then I have wanted to make a point of living life and not just existing like I have been, especially while I was on chemo. It was making me so sick that I really didn't feel like myself anymore and I spent a lot of time in bed or on the lounge and I was just existing.... and I really wanted to experience new things and make memories.
So the week after my treatment stopped I went away on a Canteen over 18's camp and had a ball!
When I got back it was school holidays so I had my 14 year old sister come and stay for the week. I wanted to have such a fun filled week planned that I wasn't really looking after myself and resting (especially after such a big week with the canteen camp the week prior). But I found a chemist that was offering FREE makeup lessons to teenage girls in the school holidays, and she really enjoyed learning about how to apply a natural makeup look perfect for school. The next day we went and got pampered with manicures, pedicures and facials (I had never done these before). I even took her to brunch to my favourite spot by the waters edge, and that night we went to Hogs Breath for dinner and she said it was the best steak she had ever eaten!
Then it was time for her to go home, and when she got picked up my other sister (15 year old) got dropped off for her week to stay.
I felt so guilty while she was staying with me, as I was so tired from the previous two weeks, that all I wanted to do was mostly rest and take it easy. She was okay with it as she was enjoying the quiet and break from all the other siblings. I organised the makeup lesson for her too, and the chemist even had a VIP beauty night which we went along to and she won the lucky door prize! I also took her to brunch, but didn't take her to be pampered, frankly I couldn't afford it again (I did buy her something as a consolation prize).
It was nice having my sisters stay with us, they were both so helpful and willing to help me around the house or help me if I was trying to walk or climb stairs... we didn't want them to go home, it was nice having a youthful feeling in the house.... but mostly I was loving having company of a day and someone to talk to and not being lonely while Russ was at work.
So last weekend was our 6th wedding anniversary and we decided to go away for a few days and stay at a cabin at South West Rocks. We dropped my sister off at her house on the way, then we went Pokemon hunting for an hour or so and then we checked into the cabin and had a nap. I was so exhausted! The cabin was rather nice had 2 bathrooms which were rather spacious (just what I need and prefer) and it was right by the water's edge.
We went out to dinner that night to celebrate my brother's early 21st birthday with all the family and had a rather nice meal, then we went Pokemon hunting again, this time with my siblings. We had our 11 year old brother with us, but we lost track of the time and soon was 10PM and there were messages from mum to get him home as he had school the next day (whoops). But he was loving it.
Then we had a nice sleep in the next day (Monday) and decided to go to Port Macquarie to lunch (all you can eat buffet) and then go for a huge walk and pokemon hunt.
Palliative Care hired a wheelchair for me to try and to help me get out and about more for walks with Russ and to make things less painful for me.
I was rather nervous using the wheelchair for the first time, was worried people would stare or laugh. But people smiled and nodded, and I was holding both mine and Russ' phones and catching the pokemon... I have the two phones at once skill down pat.
Our walk was about 2 hours and I think we did 4km or so in total, Russ was feeling rather tired and I was starting to get in pain so we decided to head home while it was still daylight.
Right where our car was parked in Port Macquarie there was a wall with painted angel wings, and a sign that explained what it was about. You are to stand in front of the wings and take a picture and upload to social media using the hashtag #ifweallhadwings and it was to raise awareness of a NFP (not for profit) in Port that helps to alleviate the financial stress for someone undergoing cancer treatment. Here is my picture below.
So we headed home (well back to the cabin) and ordered Chinese for dinner and had a nap... I didn't realise how late it was and I had promised my siblings that I would help them with assignments and it was 8PM when I realised the time... so we called around to my brother's to give him his birthday present and see him before we headed home, then a quick pokemon hunt and it was bed time.
I started crying when we were in bed, as I hadn't felt so alive and happy like I had those past few days and I was dreading going home the next day... I was trying to convince Russ to stay another night in the cabin but he said we really couldn't afford another night. He said if my nan would let us stay at hers that we can stay another night, I could see mum and the kids a little more and have dinner with them and then I could catch up with one of my oldest and dearest friends the next morning for a cuppa before we left.
So my nan said "of course you can stay" and so we did.
When we left on Wednesday we had to make sure we left Kempsey by 10AM as I had to be in Coffs by 12PM. For months I had been looking forward to Turia Pitt coming to Coffs and speaking, and it is something on my bucket list to hear her speak and hopefully meet her. I just think she is so incredible with what she went through and how she doesn't let anything get in her way of achieving anything, she sets her mind on something and works her ass off and she makes shit happen... I had a few friends hear her speak and spoke of how incredible and inspiring her talks were.
So I went along to her talk (along with my nan and her sister) and we had a nice lunch and then Turia spoke. She made us laugh, I know I cried, but she really inspired me.
and guess what...
Afterwards I got to meet her! I asked her to sign a copy of my book (her book she wrote) and told her that it was on my bucket list to hear her speak and she said "well mate I am fucking honoured".
I walked out of there trying so hard not to cry, not sad tears but really happy elated tears you have when something you have wanted came true and I was just so full of emotion and excitement... she really is remarkable!
So that brings us to Wednesday night and I was so exhausted I went to bed early and woke the next day with the flu, Russ was sick too and only returned to work yesterday. I felt better yesterday (from the flu) but was in bed dealing with girl issues... it has been over a year since my last period and it returned yesterday and has been rather painful... so I have been pretty much back in bed since Wednesday night.
But my pain is a bit more controlled now, just taking pain meds more regularly and it is helping a lot.
So that is my recap of the month that was July, was a crazy busy month... next month might be as crazy (we hopefully get the keys for the new house... IF IT IS FINISHED urgh it is taking forever) but I am in LOVE with my new kitchen.
Thanks for all the support and for following my journey.
Wednesday, July 13 2016
[this post may contain spoilers, proceed at own risk]
I was watching Winners and Losers last night (the second episode of what will be the final season) and I felt rather annoyed by a particular conversation that seemed to have been missed on the show.
Jenny found out that she was pregnant (was a surprise/shock) and that she later learnt that it was ectopic.
But there should have been a conversation with Jenny and her husband about their options they have for planning or 'safer planning' for a family when she carries a genetic cancer gene mutation.
We learnt earlier in the series that her mum and sister both had breast cancer, then Jenny discovered that she too had the gene and she opted for the double masectomy... I always thought the writers did so well in those episodes that followed her diagnosis and surgery and that Melissa Burgland conveyed the emotion really well, I especially felt that I could relate.
But I felt really disappointed watching it last night that there was nothing mentioned about speaking with a genetic counsellor regarding family planning or anything.
I just know with my genetic cancer gene mutation that I had to consult with so many doctors and specialists BEFORE we were to start trying for a family, and to really know our options and risks going forward. Options for us included IVF where there is a test that can be performed on the embryos to see if they have the gene mutation.
I just know for me, a big responsibilty I felt was that I didn't want to be careless and knowingly pass on this gene knowing what my family (dad and sister) along with myself have gone through, and there would be that stress and worry of not knowing if they inherited the disease until they were at an age to be allowed to be tested... I am not judging those who have the disease and have children knowing the risk of passing it on, but I just know for me I would find it too hard and stressful knowing that I had options available to me.
I just think that the writers should have added in a discussion of some sorts and work with reputable sources to encourage awareness and to talk with someone (either her partner/family/specialists) about the risks or safer family planning.
I know it is just a show and it is fiction, but they did their research in the doctor prescribing a single dose of methtrexate to treat the ectopic pregnancy, but surely they could have done research about family planning when you have a known cancer causing genetic mutation... and that is where I felt the show really let me down.
It would have been nice to watch the show, and watch how the conversation would go and know somehow that I wasn't alone in my conversations with my husband/family/specialists about planning for a family with this disease.
Will be curious how the story pans out... but given it is the final season we may never know if the gene stopped with her or if she passed it on to her future offspring.
Speaking of offspring, I am LOVING this season!
Monday, July 11 2016
Canteen is an organisation (charity) that provides support and help to young people (like me) aged 12-24 to help them on their cancer journey. You might have heard about Canteen through their National Bandanna Day campaign that runs annually each October.
When I was younger I had a beautiful little sister who was fighting her own intense cancer battle, and canteen helped our family out with support and ever since then and after my sister's passing we continued to support Canteen through their National Bandanna Day, our way of saying "thanks for the support".
It wasn't until after my dad died in 2012, that we realised that Canteen was there to help us through our dad having cancer and then dying, we thought it was just for people who had cancer and didn't know we could join too.
It was a few days after my dad's passing and my siblings weren't coping, so I looked into signing us up and a short time later we went on a 'New Member's Camp' where we weren't the only new kids on the block.
What I didn't know at the time was that I had found a place where I belonged and could turn to when I needed support... I also didn't know just how much I would come to rely on Canteen.
After the camp I kept in contact with the staff at my local division and accessed the counselling support.
Late 2012, I was told that I had early signs of bowel cancer and that I required my bowel to be removed in the coming months. I turned to Canteen for help and support as I made the decision to have my bowel removed and live the rest of my life with a permanent ileostomy.
Because of my surgery I didn't go on any programs during 2013, mostly out of anxiety around living with a stoma but also I was in and out of hospital with pancreatitis that I just kept missing out, which again happened during most of 2014. I was going on an over 18's program but instead was in hospital the day before camp started.
During this hospital admission they did a scan and found there was a tumour, I then travelled backwards and forwards to Sydney for consults with specialists and having scans done.
Canteen were fantastic, the staff touched base with me each week and when they were in the local area they would invite me to coffee to see how I was going.
I decided to say thank you to Canteen for their support and organised a Halloween themed high tea fundraiser, which was an absolute blast and success raising $1200 for Canteen and is an afternoon that guests still talk about.
Then in early 2015 I had a PET scan and it showed my tumour had now doubled in size, I had a new tumour growing and that I also had thyroid cancer.
I turned to Canteen a lot during this year, and I was involved a lot as a camp leader or helping to plan different programs (even though I wasn't able to attend for health reasons). I offered up my graphic design services and would design different flyers and posters or invites for camps, I loved not only having something to do but to help in my own way of saying thanks for being there for me.
I actually just got home from an Over 18's program, and I am so glad that I went... During the past fortnight I was told my chemo was to be stopped and that there were no more treatment options going forward and that palliative care were called in to help manage my pain and symptoms and to help me feel more comfortable.
The past fortnight has been extremely tough to deal with, and I just really needed to escape and get away and just talk to people my own age with their own experiences... to talk with peers who 'get it'.
I had so much fun on the program, and despite being in a lot of pain I really enjoyed myself. The staff were amazing going above and beyond to help me, and the member's who attended were so kind and accepting.
To be honest, Canteen is the one place that I feel accepted and valued and not judged, and I think that is why Canteen works so well.... it is a safe place for you to explore your feelings and dealings with your cancer journey and you are surrounded by people who are as well.
I honestly don't know how I would have gotten through and navigated the last few years without the support and help from Canteen, and for that I will always be thankful and appreciative of all the times that Canteen was there when I needed them.
I age out of Canteen this year, so that was my last camp. I still plan on keeping in contact with the staff and offerring my graphic design services. But I have made some amazing friendships through Canteen that I will continue to cherish and keep in contact with.
If you are a young person aged 12-24 in Australia, or know someone who is affected by cancer (whether it be themselves, their parent or sibling who was/is sick) please let them know about Canteen by clicking this link.
Tuesday, July 05 2016
When it comes cancer and sharing your story/journey, there is always someone who either seems to know the cure for cancer or has some advice for you... commonly it is telling you what you're doing wrong and somehow making you feel that you are to blame for it (having cancer).
Quite often I am told if I don't eat sugar and avoid it then my cancer will stop growing and will go away.... or that if I wasn't fat then I wouldn't have cancer.
Another piece of 'advice' I got a couple of months back, was that if I LOVED my cancer unconditionally that it will be unwanted and will just go away.
But what was rather upsetting recently was advice not given to me, but to my little 15 year old sister.
My sister has the same genetic cancer causing gene (FAP) that I have and that my dad had (that is killing me, and killed him)... so you can imagine how hard it would be at her age knowing she has a 100% chance of bowel cancer and has seen her dad and older sister sick from the disease.... it would be rather distressing not knowing if she too would experience what my dad and I experienced.
My sister went on a recent school camp and was asked to share her story in front of her peers, teachers and also to an audience of people attending at a church.
She gave her story and at the end a gentleman stood up claiming to be a doctor and told her "if you avoid red meat for the rest of your life you will never get bowel cancer".
My sister came home all excited and filled with hope. She said to me and my mum "guess what mummy, I am now a vegetarian as I was told by some doctor on camp that IF I never eat red meat again I won't ever get bowel cancer and be cured".
My heart just sank and broke, here she was filled with hope all because someone told her advice that they shouldn't have... regardless of what you eat, if you have this gene you will get bowel cancer.
I had to fight hard to hold back my tears as I told her the reality... I watched that bubble literally burst and it broke my heart.
She had hope... but it wasn't the right advice to be given... he doesn't know our story, he doesn't know our gene and hadn't consulted with our many specialists who are specialists in the field for a reason.
All she could keep saying was "but he was a doctor".
But even doctors should know when to keep their opinion to themselves.
But bless her dear heart, she plans on studying hard to become a scientist to find the cure for cancer.
If you are talking to someone and you are about to give advice of the latest 'craze' going around, please refrain from offerring unwanted advice as the damage can be a lot to someone who is vulnerable, scared and is looking for hope.
Just look at the fall out from Belle Gibson telling people she cured herself of brain cancer, WHEN SHE NEVER HAD CANCER TO BEGIN WITH.
Just remember, words can cause damage... and starting or ending with 'Just sayin' doesn't make it any less of an insult or offence.
Saturday, June 18 2016
I was asked recently by a couple of readers if I could share some inspiration ideas for storing your stoma supplies that is practical, affordable and also easily reachable.
Then when I presented at a local stoma education day here in Coffs Harbour, I was asked the same question again, so I thought maybe it was best if I did a blog post with some inspiration to how I store my stoma supplies and how a fellow reader stores theirs.
Idea #1: Invest in a small cupboard
Idea #2: Invest in a craft storage trolley on wheels
Idea #3: Invest in a craft storage drawers not on wheels
Idea #4: storage drawers to fit in under your vanity
I know it is a personal choice of where and how Ostomate's prefer to do a bag change, and I know some of these inspiration ideas might not be ideal for everyone but they work for me. If you too have a nifty stoma storage idea you would like to share feel free to send me an email or message me via facebook.
Friday, May 20 2016
When I talk to a lot of my friends or peers who aren't sick I realise just how different our current life stages are.
I have some friends that are busy planning their weddings (which I am loving being involved as I just love LOVE and weddings and all things happy) but I am at the stage of my life where I am planning my funeral and my list of wishes I want to do before I kick the proverbial bucket... but just because I am planning my funeral doesn't mean I have given up or that I am not being optimistic or ostomistic I should say about my situation.
While I feel a little sad that this is my current reality, I am in no way giving up so please don't tell me that I am.
For me, planning my funeral and writing a bucket list or as I prefer to call it my 'happy list' I feel is somewhat empowering and it makes me feel I have control over my situation, and control is something that is often lacking when you are sick, especially terminal.
Why is it empowering you might ask? Well it is simple really... it means I have control like I said just before, but it also means that when the time comes my family and husband won't be left wondering what I wanted to have done.. and I have seen the arguments over funerals and who organised what or didn't organise and I want to spare my family that extra stress when they are grieving... albeit they will have to make arrangements and finalise the order of things like flowers and food as I don't know when I am going to die (and this is the hard part about planning your funeral). But I am planning on having everything written down and instructed and planned so all they need to do is make a couple of phone calls and order things... I want it to be simple for them and want them to feel stronger that they don't have to make these decisions.
One thing I am struggling with is having my family and friends involved in helping me plan my funeral.. which it will be more a party/memorial service as I plan on being cremated so there won't be a body. But, no one is wanting to help me and I understand it is hard for them but I just wished I could talk openly and be supported without feeling like I am upsetting them. And I don't want them to read this and feel obligated in anyway to talk with me or help me plan, it is just one of the hard things about my situation is that it is hard on those who love me.
I want a party like service where everyone is to wear colours, and I want to find bio-degradable balloons that I can have released, I want bright flowers, I just want it to be bright and bubbly like me and not dim and black and depressing because that isn't me.
I am working on a concept for my funeral called a 'waste free funeral' where things like flowers can be donated to nursing homes or people in hospital doing it tough to make their day brighter, or left over food to be given to homeless shelters or like the balloons I don't want them to impact on the environment. I want to have a great send off but I don't want to hurt the environment or others, so I want to give back where I can and this is my way of doing so.
But please, if I am wanting to talk to you about my funeral and I am all happy and chirpy please just think about what you're about to say as it hurts me when you say things like "well that is too depressing to talk about", or "why are you giving up" because I don't want to do this alone and I am not sad or hurting about this decision... as I keep saying it is making me feel empowered.
Sunday, December 27 2015
Late last year, I decided that I would organise a fundraiser event for a charity I have been personally involved with the past 3 years. This charity is called Canteen and they help support young people (like myself and my siblings) who live with cancer in our lives.
We first became members back in 2012 after the loss of our dad to cancer, and they have been a huge support to me while I have been on my own cancer journey. So I wanted to do something to show my appreciation and have a bit of fun, and that was to host a Halloween themed high tea!
The turn out was great, so many dressed up and we raised a total of $1200!
To the attending guests they thought the event ran smoothly, but for me I realised so many things I could have done differently and I thought I would share these with you all. To see the full page of the event sponsors and images courtesy of the professional photographer who donated his time to run our photo booth, click here now.
10 mistakes to avoid when hosting a fundraising event
#1. Give yourself plenty of time to organise it
#2. Have a committee or team to help you
#4. Make sure your phone is charged
#5. Get an MC
#6. Time management
#7. Find monetary sponsors for the event
#8. Don't forget to thank your sponsors or supporters
#9. Get the support of local media behind your event
#10. To save costs do as much DIY as possible, trust me it can still look awesome!
I also made the trophy to be awarded to the best dressed, which I found some plastic couldrons and plastic mouldable skeletons and created a funky trophy.
I also used the plastic cauldrons to make little gifts of lollies for those who would win the group trivia games.
So if you're wanting to host a fundraising event, I highly recommend it! I still have people telling me over a year later how much fun they had and even on the day I had people asking when the next event would be held. I had hoped to run it again this year as an annual thing but I have been too sick to do it this year and especially undergoing chemo it was just too much pressure I was putting on myself and hope that one day when my health returns and I am in a better position I will host an event again.
Thursday, December 17 2015
November (like October) involved not as much chemo as I would have liked and meant more time spent in hospital.
NOV 3RD, 2015: Had chemo today, was the first day in 3 weeks that I have had it was also Melbourne Cup day. I felt rather seedy the following day(s) and rather tired. Even the blandest of foods I couldn't stomach and wasn't until a few days after chemo that I actually ate something. I actually ended up being admitted into hospital on the 5th of November with fevers and suspected infection somewhere. I had a CT scan which showed my tumours haven't shrunk but they hadn't grown much.
NOV 10TH, 2015: No chemo today as I was in hospital
NOV 17TH, 2015: Had chemo today, was the first day in a fortnight I had chemo. My mum picked me up early and we went and had lunch by Mangrove Jacks, it is this really lovely restaurant situated on Coffs Creek and is majestic.. such a tranquil spot! Was rather funny at lunch there were these seagulls in the water being chased by big fish, the poor birds were paddling their little legs as fast as they could to get away!
My port bled today for the first time in ever, which had me excited that maybe all the issues of my port were behind me. I did wake this morning to a bunch of sweet texts from my sister (14) and brother (18) wishing me best of luck for chemo. I am loving the family support recently, it is reasurring knowing you're not along in this huge battle.
I started some new medication today, my oncologist prescribed me lorazapam which I am to take the night before chemo, the night after I have had chemo, and the day after I have chemo which will hopefully help keep my body calm and works well with my other medications he gives me during chemo like ondanzatron.
I had fevers a couple of days after chemo, but with some panadol I was able to manage the fevers at home, but have been sufferring bad with kidney pain and migraines.
NOV 24TH, 2015: Didn't have chemo today, they tried to use my port but it wouldn't even flush saline through! I went and had a portagram done, which is a scan of your port to see if it is working and turns out the thing is blocked! I have to come back on Thursday (26th) and have a procedure done to unblock it.
I decided to wear my storm troopers headwrap to chemo today along with my Dior lippy I got from Look Good Feel Better workshop (loving the pink!). I got a lovely compliment from the volunteer today, she said "you always look pretty with your hair wraps". A compliment from a stranger always makes you feel better.
NOV 26TH, 2015: Today I am having my port unblocked. It is a surgery that requires the doctor to make an incision into my groin and going in through the artery he can feed a cable up past my heart and chest and to my neck where my port is and unblock it. The surgery went well and was a success and the port started bleeding back. The surgeon also was able to reposition the port so it wasn't sitting so high up.
I woke up half way through the procedure and it was rather bizarre just laying there not able to feel anything but know that you are being poked and prodded.
Once I was awake, I had to stay in bed for an hour to reduce any complications post surgery and then I was allowed to sit in a chair, have a sandwhich and wait for a couple of hours before I could be discharged.
The incision site was rather sore for a couple of days and chemo will be scheduled for next Tuesday (1st Dec).
Even though it is month two of this chemo saga, it is only something like 4 days (cycles) I have had of chemo because of all the interruptions such as surgeries, port not working and being in hospital. Here's hoping things go a bit more smoothly next month... I am a bit anxious about Christmas and hope to be able to spend it with my family.
Tuesday, November 17 2015
Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.
I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.
I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.
While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.
But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.
I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!
I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.
This wasn't the only opportunity I have found by chance.
I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.
So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...
But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.
Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me...
In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.
So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.
My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.
So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!
Tuesday, November 10 2015
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
Monday 09.11.15 1PM AEST:
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
Monday 09.11.15 3PM:
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
Tuesday, October 27 2015
I have spent a lot of time over the last couple of years in hospital, often my stays (90%) have been in the public hospitals as a private patient and while you don't always get a single/private room due to these being given on an availability or clinical needs basis, it often means you are needing to share a room with other people.
There are two types of shared rooms in a hospital, there is twin share meaning there is one other person in your room or their is a 4 share room meaning you are sharing a room with 3 other people whom should be of the same sex as you.
I just got home from a 12 day stay in hospital and it reminded me of this post I started writing earlier in the year after having had spent 5 weeks in RPA and it was a horrible time mostly because I feel that others don't quite know or understand the etiquette that should be practiced when sharing a space with others... mostly it comes down to being respectful, but I will share some etiquette that should be followed (and if you have your own feel free to comment below).
Hospital etiquette when sharing a room in a public hospital
#1. It is not the time or place to LEARN how to play the ukulele
#2. Use headphones
#3. Rest periods mean rest periods
#5. Being in hospital isn't the time for a get-together
#6. Try not to be so negative
#7. Do not talk about others behind their backs
While this is just a short list of etiquette practices that should be followed when staying in hospital and sharing a room, it is important to remember to treat others as though you would like to be treated and it should just be common courtesy to be mindful of your surroundings and respectful of other's right to quiet and privacy.
If you have had a bad experience when sharing a room, feel free to comment below.
Friday, October 16 2015
Earlier this month on the 2nd of October, I travelled the three hours south of Coffs Harbour to Port Macquarie where I had an operation to put in my portacath (port for short) for ease of use/access during chemo.
I just realised how funny that I had to go to Port to get a port (HAHA).
I spoke with a couple of friends who I met through Canteen that have gone through treatment and I asked them how they got their chemo. One said she first had it via a drip in her arm then got a port put in and loved it, and my other friend had a Hickman line.
I had met with the vascular surgeon and he showed me the port I was getting, which was this awesome metallic purple Power Port and given purple is my favourite colour I thought that it was the coolest thing ever, although my doctor thought I was weird given that you won't see it as it is under your skin... but knowing it is there and that it is purple is all that matters!
On the day of the surgery:
The night after surgery:
How is the port accessed?
It turned out the needle was defective, so they tried a new needle and it worked using the head turned far to the left and coughing tricks.
I have since had my port accessed multiple times during chemo, but also for fluids when I have presented to the Emergency Department with dehydration and fevers.
For more information on ports and if it is best suited to you or your chemo regime speak with your oncologist or your chemo nurse who can provide you with booklets and information.
Monday, October 05 2015
NB: This is a Sponsored Post
For most of the families or couples I know, live on a budget and it is often paycheck to paycheck. I know this is the case for my husband and I aswell.
It wasn't until my husband lost his job in 2012 (when his employer went into administration) and at the same time my hours had been reduced from 24 contracted hours weekly to 4 (unless I picked up extra shifts), so I had to learn quick smart a) how to budget, b) how to make the money we have from each pay count and c) how can we manage when there is more money going out than coming in.
Up until this point, I had never created a budget. But once I had, I saw how much EASIER it made managing the bills, and three years on I am still finding the success it has helped us to better manage our finances.
I wrote a list (table) of all the money that we had coming in, and all of the money that needs to go out on bills and also allowing for food. Because of how tight things were I didn't allow for things like shopping, movies, going out for dinner or date nights as these were 'luxury expenses'.
My expense list looked something like this: (NB: this is an example only)
Then there were the yearly bills like car registration and CTP Greenslip (so roughly $1000 annually) which I put $20 a week away into a seperate savings account so that we had the money there when we needed to register the car.
Up until the last month, I have been paying the same amount in bills as I had done 3 years ago. But it got me thinking that IF I reviewed my current bills what potential savings could I find?
Reviewing the mobile phone plans:
Reviewing your bank accounts:
Credit Cards and Balance transfers:
Reviewing our Home insurance:
Reviewing our Private Health Insurance:
So I was on a mission and enquired through Health Insurance comparison with the type of cover I have now and what I pay, and wanted to find out if there were comparative policies that:
Thank you Health Insurance Comparison for such a seamless process to help compare the right health insurances for myself, and for helping me to save money on future surgeries. Don't forget to compare, save and go in the draw to win a year's health insurance for free!
So while you might feel loyalty to a particular company, you also need to feel loyal to your wallets and if you can shop around and find a better deal on other areas of your financial spending (power/gas/phone/internet/loans) you can afford to go on that nice holiday, or better yet buy that pair of shoes you WANT but probably really don't need...
or better yet... do what I am doing and using all of the savings and money you would otherwise have spent on bills towards purchasing your first home!
Thank you for reading my 5 top things to review when you're living on a budget to help save yourself a lot of moolah!
Monday, October 05 2015
NB: This is a sponsored post
Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.
A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.
In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.
Some contingency plans you might have (or need) in your life may include:
1. A will
2. A funeral plan
3. How you will pay your mortgage and bills if you were to lose your job?
4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
Saturday, October 03 2015
Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.
I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).
While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.
I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.
So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!
Stoma tips and life-hacks:
#2. Your boobs become a valuable asset
#3. Invest in a hair dryer
#4. You'll find many uses for your hair dryer
#5. Avoid foods that cause blockages
#7. Avoid drinks that cause winds
When out and about:
#9. Always pack a spare change of clothes
#10. Jeggings or any elasticised pants will become a staple in your wardrobe
#11. Baby wipes aren't only used for babies
Stoma kit advice:
#13. Invest in some sort of room spray
#14. Always have at least 3 of each item on hand in your portable kit
Storing your supplies at home:
#16. Never wait until you're on the last handful or box of supplies before you re-order
Mental preparedness and a stoma:
#18. For me, my life truly began when I had my stoma surgery
#19. If he truly loves you, having a stoma won't matter
#20. You can still swim when you have a stoma
[end of advice]
While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!
Friday, September 04 2015
Recently, I was filling in one of those online question surveys that was for a cosmetic surgery company (I really wanted to win the cash prize) and while there were the usual questions about if you have considered cosmetic surgery before, there were also questions about your self esteem and self worth.
One question that stumped me, was "if there was one thing you could change about yourself, what would it be and why?"... and the answer may surprise you, I know it surprised me!
I have never been someone who has considered undergoing cosmetic surgery in order to change how I feel about myself, and while I don't judge those who do, I just feel if you're unhappy with who you are now that it might not necessarily change after you've spent thousands on surgeries... it might make you feel worse if it didn't have the desired effect.
But mostly, I have already had so many surgeries and medical procedures because of the cards I've been dealt with that personally, I just don't want to put my body under the knife if it isn't needed. I have wanted a boob reduction, but that is mostly because my boobs are like a double J or something (no exaggeration) and it gets harder and harder to find bras and is so uncomfortable... but that isn't the one thing I would change.
I gave this answer some serious thought, and I thought about all of my physical "flaws" and imperfections and which one I would change.. I thought about my boobs and while they are huge and heavy they keep me warm (I do get cold very easily)... I thought about my eyes which are so wonky that my husband never knows if I am looking at him or around him (and I have to tilt my head slightly in pictures so you don't notice one eye is bigger than the other)...
My endometriosis crossed my mind, and I felt the all too familiar pains that it (like my FAP) has taken a lot from me... I thought about if I didn't have my endometriosis if I would have had a family by now and if I would make a good mum, to imagining a life where each month I'm not crippled with pain from the endo... and I even imagined what it would be like to have sex and ACTUALLY enjoy it... as opposed to how it has been for me the entire time I have been sexually active.. it not only is extremely painful during intercourse but afterwards it feels like there are thousands of knives stabbing at my insides (so you can imagine how hard it can be for your husband to know that while it brings him pleasure it is torture for you to endure... and then he can't help but feel bad about it... then you feel bad for making him feel bad... it is a horrible cycle).
OR is the one thing I would change about myself, my desmoid tumours? I am in constant pain everyday and finding it harder to enjoy things as I am just so exhausted from being in pain and worrying about my tumours. I am scared of what will happen if these tumours don't respond to chemotherapy this month and what this means for me... My kidneys are starting to go into renal damage, my tumours are pressing on my spine/stomach and sciatic nerve, and then there are two tumours which are close to strangling my small bowel and I haven't any large bowel (if my small bowel dies I might too).
OR would I want to change my weight because apparantly if you're overweight you can't be happy within yourself... while I am trying to lose weight it wouldn't be the one thing I changed about myself.
I thought about all of my scars that I have from my various surgeries and how they make me feel... and they mostly make me feel empowered like I am a tough bitch and it is almost somehow like proof of that time that I had to face an adversity but before I could get through it I had to first climb the huge mountain that was blocking me from it.... each of my scar bears a story to be told... and some of my scars show a sign of the battle faced.
Like the scar under my chin, which I got on the last day of Kindergarten in 1996 when I was so excited for losing my first tooth the night before. I had gotten $10 (the tooth fairy was rather generous) and I was skipping along not noticing the water overflow from the bubblers.. when... spalt! My head greeted the concrete and was taken to hospital to get stictches.. I was such a brave girl I got 6 stitches, a story to tell ANNND I got to choose a toy as a 'what a brave girl you were' gift...
Or the scar that runs from just under my breasts to just above my hoo-ha.. a daily reminder of just how lucky I was to have my bowel cancer detected early and underwent a total colectomy.. a scar that while it is huge and bumpy (and growing tumours attached to it) that it is a HUGE part of who I have become and a testament of how far I have come in the last 2 years...
...Which brings me to my ileostomy.
While some might assume that I might loathe my ileostomy everyday (albeit some days it gives me the shits), my ileostomy is something I can't imagine living without, and am so appreciative for it stands for. Prior to my total colectomy, trips to the toilet were agonising and often I spent hours on end just sitting in the bathroom in a lot of pain and often house bound... leaving the house meant that my trips needed to be carefully planned around where the nearest toilets would be, or avoiding eating foods for the horrific, painful and explosive events that were to follow.
The thing I LOVE the most about my ileostomy is that it had given me my life back and a quality of life I haven't had in about 10 years or so.. it meant I could now eat and enjoy foods without being in agony.. it also meant reducing one of my many cancer risks.
So if my ileostomy ISN'T the one thing I would change about myself, then what must it be?
Simply put, I would like to change the expectations, standard and pressures I put on myself because I need to remember that I'm not a superhero and I AM doing the best that I can... I need to give myself a break and be kinder to myself.
Something to remember...
If you could change one thing about yourself, what would it be?
Sunday, August 30 2015
There is something about being chronically sick and told you're essentially "a ticking time bomb" that really helps to put things into perspective.
When I was first diagnosed with FAP in 2010 (I was 19), I was told that I wouldn't be at risk of bowel cancer until I was 30. It made me realise just how much I wanted to do and achieve while I still could.
Then in late 2012, I found out the polyps in my bowel were turning cancerous and that I only had a matter of months to act and have all of my bowel removed. You would think that this would cause more of an alarm and prompt me to want to do a lot more with my life, but as the bowel cancer risk was removed, I naively thought that my risk of cancer would be removed and I could get on with my life..
But boy was I wrong.... My cancer journey didn't end there. In fact, I was diagnosed with thyroid cancer earlier this year too which thankfully was successfully removed in April while it was still in the stage I phase, remained contained within my thyroid meaning it hadn't reached nearby neck tissues.
It wasn't until a year ago that I had this drive and motivation to want to do everything I have ever only imagined in day dreams, was re-ignited and has been a continual driving force (and distraction this past year). It made me realise that while I was content with my life and my accomplishments so far, that I didn't feel entirely happy, and I knew that there was more I wanted to do and see.
So I decided I would write a happy list, as opposed to a bucket list for one of two reasons:
What was the changing point for me, was when I was in hospital for pancreatitis when the doctors did a CT scan that revealed there was this new and rather large tumour and suspected it was a desmoid tumour. These types of tumours are really rare, but they can also be rather deadly and life threatening and these 'aggressive fibromatosis' can cause death.
To put it bluntly, when I was first diagnosed with FAP my doctors said that they "hope that you don't develop desmoid tumours... if it isn't the cancer from the FAP that kills you the desmoid tumours will".
So while I am only 24, I have come to terms with the fact that this condition will kill me, I just don't know when. Some doctors mentioned up to a year if the tumours continue to grow at the rate they currently are (thankfully last lost of treatment is keeping them at bay and no new growth) but others have said 5-6 years.
#2. Sense of accomplishment and fulfilment (purpose/direction)
#3. Is more empowering and motivating
#4. Offers inclusion of others
#5. Works as a distraction
Things on my happy list include (in no particular order):
I know some of these may sound over the top, and I admit they are but if you're going to dream you might as well dream big as well as being realistic... now if I could just find the next multimillion dollar idea, I will be well on my way to taking over the world (not quite literal).
So tell me, do you have a happy list and what is one thing you want to mark off your list? Feel free to comment below.
Saturday, August 29 2015
When it comes to gift giving and finding the perfect personalised gifts, I seem to have a nack for finding those perfect gifts that will have people talking about, especially if there is a story behind receiving the gift.
Originally, I was planning this post to promote in the lead up to Father's day... but as this is now only a week away I realise it could be best represented as a general gift guide for Christmas (which someone reminded me yesterday was only 119 days to go), for a birthday coming up or for Father's day whether it was a belated 2015 gift or planning ahead for 2016.
Either way, I have sourced some pretty awesome gifts that I know any dad or husband would love and appreciate.
BEST OF ALL these are made here in Australia by small businesses and some are even handcrafted/handmade. I love supporting the little guys in business, who are working hard to support their families and helping us all to add something unique to our lives.
Here is my list of 10 personalised gift ideas your dad or husband would love!
#1. Personalised Chopping Boards | Miss Bold Design $35 + shipping
Miss Bold Design also has a range of other boards perfect gifts for your mum, nan, friend, or as a wedding gift personalised with their name and the date of their wedding.
Current turnaround: Please note that personalised boards will be created after September 12th, 2015
The range of Quote/name prints available at Ollie's Room are a perfect gift to not only brighten up a room, but pop it in a fram and you have a special keepsake!
❖ Each print can be personalised with a name or custom writing* and can be personalised with 2 colours.
Available in the following Sizes:
Turnaround: As each print is individually personalised and professionally printed by our printing company, delivery times to you can take 2-3 weeks (approximately). If you wish to purchase express postage. Please contact us before ordering.
The Man Stand is the perfect gift for any guy who needs a place to store those things he only wears when going out. The Man Stand doubles as a iPhone or iPad dock and will keep all his things ready to grab when walking out the door.
❖ Store (& Charge) an iPhone or iPad.
The Stand is adjustable and can be set at different heights for reading or watching movies. The Stand also folds flat so he can take it away on holidays or business trips.
Excludes accessories shown in picture for demo only, the demo images show Non-Personalised Man Stands. Non-Personalied Man Stands are $33 + shipping.
Turnaround: Include a personalised message on your Man Stand, see their Fb page for examples. Please allow 7-10 days for personalised products.
If you've got some beautiful photos of your children and want to create the ultimate personalised and keepsake gift, then look no further, as I have found the solution... Zelsk! Based in Brisbane they ship all over Australia.
Some of their unique gifts pictured include (and not limited to):
Turnaround: Orders and the online store is closed until 7th September 2015, but like their fb page to be kept up to date when the store re-opens and their exciting new rebrand too.
Heat packs are a perfect gift for Dad, Grandpa or your husband. Created in a range of designs (pictured). Available in one size – approximately 28x19cm!
Personalise it on the front with any name (eg. Dad, Grandpa, Uncle, Poppy, etc) you’d like in and as these are printed on both sides and the pattern wrapping seamlessly all the way around, you can add a personal message on the back with who the heat pack is from!
The heat bag is made entirely of 100% cotton. Filled with raw long grain rice, and organically dried lavender. A beautiful, soothing & divine scent to smell, as well as staying warmer for much longer.
Easy to use and quick to heat up! Perfect for aches, even lovely to pop into bed to take off the chill. Lavender is calming so will enhance a great nights sleep. Or to chill – Put in a small plastic bag & pop into the freezer. It won’t freeze like a block of ice, instead the grains of rice become super cold & very pliable.
Turnaround: As these are all individual and personalised, they are made to order, please allow approximately 3-4 weeks from the date of order for delivery.
The 10 most awesome personalised gift ideas for Dad continues after this image.
Give your gift the WOW factor by ordering your very own wrapping paper which comes in a range of sizes starting at 43cm x 1m and ranging to 43cm x 5m lengths of paper.
Some product information at a glance (see their website for more detail):
Current turnaround: Orders are shipped next business day excluding Australian and Vic Public Holidays.
Show Dad how much you care on Father’s Day, his birthday or Christmas with a laser-engraved 500ml Beer Mug! Have his name and a special message engraved for a personal gift your Dad will love and no doubt cherish.
Each Beer Mug or Beer Stein is professionally laser engraved with your selected artwork or custom image. Best of all, all artwork is completed free of charge with unlimited revisions!
Turnaround: Your gift will be on its way to you in only 5-10 working days, even faster if it is urgent.
Current turnaround: This will be shipped approx. 1-2 weeks from the time of order
Does an important man in your life love playing the guitar? If so this personalised metal guitar pick is not only the perfect gift but a unique keepsake as well.
Available in your choice of:
If you're looking for the pick on it's own and not on the keyring, LOVEnCherish have a range of metal picks with and without key fobs. Pricing varies on design, but a sentimental gift that will be loved and cherished over the years to come.
Each pick can be personalised too with a name or date.
Turnaround: Orders are processed in order of date of payment received. Regular custom orders take up to 2-3 weeks to be made and are then posted out via registered post (Australia only).
#10. Custom Torch Light Stubby Coolers | Kool4U Stubby Coolers $TBC
Current turnaround: Please note that orders take approx 7-10 working days to complete + shipping timeframes, see their website for more information!
I hope you've enjoyed finding some new products and businesses to browse, I know I already have some of these gifts in mind for the important men (my pop, uncles, brothers, and of course my hubby) in my life.
The main drive behind this post was a rather personal one. In the lead up to Father's Day this year, I (like every year since my dad passed away) felt a bit sad. But this year I decided I would do something different and I decided I would go searching for items I would have bought for my dad if he were still with us; and with those products and businesses I found, I would then pay it forward by doing a little gift guide for dad and promoting these businesses.
Disclaimer: The businesses I featured above were businesses I have come across through my own findings and thought they were pretty awesome not to share. I simply wanted to create a gift guide to help with buying gifts for your husband, dad or grandfather (even your brother too).
Monday, August 24 2015
I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.
So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.
What to expect when you need an MRI scan
What is an MRI machine?
How does the proceedure work?
How much does a scan cost?
Can anyone have an MRI?
How to prepare for an MRI in 10 steps:
ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.
These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).
As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.
You may also like the following topics:
p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).
Friday, August 21 2015
NB: This post is an entry for the Heritage Bank Savvy Blogger Awards please click on the icon at the bottom of this post, to vote for Feeling Ostomistic and you could be in the running to win $100 and help me to win a share of $11k which I want to use towards my chemo (and medical costs) coming up. Would mean a lot if you could support me.
Without a doubt you might have heard about the extremely over-the-top wedding in Sydney recently, if you haven't you may have been living under a rock... in that case I will summarise it for you. This super rich couple had a wedding which they closed down entire streets in Sydney causing traffic chaos, and their wedding car fleet involved cars worth a collective of $50 million dollars, as well as hiring helicopters, sea planes... but to have a nice wedding do you NEED to spend millions?
I remember when I was planning my wedding years ago I wanted to have the big white wedding, and I was panicking at the cost it was all coming to (something like $10k+) and so was my husband well then fiance... and very quickly the wedding planning was becomming more about pleasing everyone else and catering to their needs rather than creating a day that was perfect for my husband and I.
Because of how much our wedding was going to cost we were planning it for 2 (almost 3) years away. But then something happened (rather fate as you might call it) and in the middle of June my then fiance (who struggles with large numbers of crowds and public performance) was rather overwhelmed with the wedding guest numbers and gave me an ultimatum....
He said either we get married in a month at the courthouse or we don't get married at all!
So I said that I will change our plans and organise a wedding in 4 weeks on a limited budget as long as we have a nice honeymoon and I get to have a nice 21st 2 years later and it be the wedding reception I had of hoped for....
Let's clear one thing up... there was no way I was getting married in the courthouse and I knew I had to plan a nice low-key wedding that was still memorable, that my husband would agree too and decided to make it as nice as I possibly could on a limited budget....
All in all, our wedding cost us just under $2500 and that was including everything!
Here are 10 ways I helped to save money on my wedding in under 4 weeks of planning, and I don't regret it at all!
#1 the dress = $220
#2 the tux = $250 (including jacket, pants, tie, vest & shirt)
#3 the wedding bands = $300 for both
#4 the celebrant and photographer = $1200
#5 writing my own wedding ceremony = Priceless
#6 2 tier wedding cake = $200
#7 bouquet of flowers = $30
#8 Flower girl dresses = $50 each
#9 Food at the reception (free for us)
#10 Venue hire (free)
More ways to save on your wedding..
While it may seem like my wedding was rushed (honestly had 4-5 weeks to plan it) I am so glad that I got married when I did rather than waiting until 2012 like we initially planned on getting married, as this meant my dad was able to walk me down the aisle and be there on my wedding day (not long after our wedding he was diagnosed with terminal Bowel Cancer, and passed away in March 2012).... I now have memories I will forever cherish from that day and conversations had (that still make me laugh). I don't regret have a cheaper low-key wedding, and after 5 years of wedded bliss this year, only proves that you don't need an expensive wedding to make a happy marriage.... also saving costs where possible meant we could go on a nice honeymoon to Hamilton Island for a week.
One last tip... A wise person told me before my wedding that I needed to savour every moment of the day and take it all in, as the day goes rather quickly especially when you're excited, and you don't want to miss out.... they also went on to say that if you make it back to your hotel suite and you are too tired (or drunk) to consumate your marriage, that it is okay and not to feel pressured that you HAVE to do it on that night... there is always the next morning and you have your whole marriage to worry about that (hehe).
Hope some of my tips shared can help you on your wedding planning, if you have a tip for others feel free to share it in the comments below.
Saturday, July 25 2015
I have been thinking a lot lately about my life and especially my health and what I have gone through and learnt. One thing that keeps popping into my mind is just how much being sick affects every aspect of my life!
When you think about it, being chronically sick interferes with your physical, mental, social, spiritual and financial health. I know my bank account has taken a massive hit since I had to stop working almost 3 years ago and with the never ending medical expenses (scans, blood tests, doctors fees, surgical fees, hospital excess fees). I also know people stop inviting me places because I often cancel last minute because I am stuck in bed, in pain and unable to drive (and have no one to drive for me).
I know a lot of people only associate health with just being physical, but I wanted to bring the attention to our health being holistic and incorporates the several key aspects of our life.
There are so many ways you can perform selfless acts, and it will make you feel better about yourself by bringing jo and happiness to others.
P.S if you have any suggestions or ways that you improve your health through small changes, please leave a comment and share ideas for others reading.
Friday, July 24 2015
Today marks 5 years since I walked down the aisle and said "I do" to my incredible husband.
We have gone through so much these past 5 years, and when they say marriage is for sickness and in health they weren't kidding!
We have often been told that our love story is incredible and a true testament to how much you're willing to do when someone you love is sick or ill.
I met Russell (my spunky hubby) when I was 18 and this crazy and bubbly first year nursing student at uni. I needed a new laptop after my laptop decided to go for a bit of a swim during the March '09 Coffs Harbour floods... so I desperately needed a laptop to keep up with uni work.
I headed off to my local Wow sight and sound electronics superstore (which has since closed) and was on a mission to find a new laptop. I was greeted by this rather adorable and spunky computer salesman (and I could tell he was a bit nerdy too) so I pulled out all my charm and wit and tried to pretend to understand whatever computer mumbo jumbo he was going on about... it was so hard to focus when his eyes were so dreamy!
I was a poor uni student who didn't have contents insurance or much savings, so I needed to apply for finance for a laptop.
I spent the next couple of hours chatting with this salesman while we were doing the application, and he claims I was hitting on him (I say otherwise) but when I was rejected for finance I was about to head home and decided I would ask for his number but just like GE and flexirent, he too rejected me.
A couple of months passed and I had received a scholarship from uni and had some savings in place to attempt to buy the laptop again. So I tried to wait until a couple of months had passed before I returned to the store in the hopes he wouldn't remember me.
I had even gone to the troubles of dying my hair a red/purple colour and cutting it really short.
So the day came in July (3 months later) and I wondered into the computer department when I noticed the hot salesman. I tried to avoid his attention (I still felt the shame) and pretended to be busy looking at computers when he walked up and approached me. He smiled and said "It's Talya isn't it" and I felt my face turning red like a beetroot and in my head I was cursing with a few "f#$%, f$#%, f$#%"'s and really wished he hadn't of remembered me.
But I felt my face returning to normal and told him I was ready to buy that $2000 laptop I wanted and would need a new printer, MS office word and some extended warranty (I was every computer salesman's dream customer.. one that knew what they wanted). He started to get it all organised when he said to me "I am sorry for not getting your number that day, I have regretted it everyday since and just hoped I would see you again and not be shy to get your number".
So we got talking and he asked what I was up to since I saw him last, and I told him how I had been sick and waiting to have brain surgery in a month's time.
His response was "What superpower are your getting?" which was pretty typical for a nerd, and made me smile. I left with his number and a new computer and sat by my phone waiting for 5.30pm to come so I could call him.
We chatted for ages on the phone and organised to have a date the following sunday and chatted every night leading up to our date. It was like we had known each other forever, and I really felt that I could be myself and could trust him. There was that instant connection.
My friends gave me a bit of a hard time over the age gap. I was 18 and he was 29, but never has it felt like there was this gap between our ages. Sometimes I think he is a kid with the way he acts and carries on... but they do say it takes a long time for males to mature LOL.
So we went on our first date and we started dating and he really helped me come to terms with my upcoming brain surgery, which I was so scared about (and it was also going to be filmed for the RPA TV show).
Russ was there for me through my brain surgeries even though he barely knew me, and my dad really admired that in him and the way he took care of me when I was sick. So I was almost in the second month out of three for my hospital stay (I devleoped golden staph/MRSA in fection after one of my surgeries so was 2 month treatment to rid me of the infection) when he proposed.
We got married the following July, and everyone thought I was being married because I was pregnant (which I wasn't and yet to have a child) or that it wouldn't last because I am too young or that I was rushing into it.... what many failed to grasp was when you are faced with life or death you soon realise how crucial it is to make the most of everyday you are alive... I was doing just that, living life at its fullest and not missing out on any opportunities.
Our wedding was a beautiful, intimate and relaxing day. Aside from the usual family drama that comes with a wedding, the day was better than expected. The weather held off, and we got married on a headland and saw whales breaching in the background, it was truly magical!
Best of all the wedding (including our outfits) was under $2500! I wanted to save as much on the wedding so we could have the honeymoon we dreamed of!
Not long after our wedding I started a traineeship at a bank and learnt of my dad's terminal bowel cancer and that it was a rare inherited type known as FAP. I started screening and testing which was confirmed I too inherited this disease and started meeting with an array of doctors and specialists who wanted me to fastrack having a family (preferably via IVF to diagnose any embryo's affected with the gene).
It was hard being a newlywed and finding out that your dreams of having a family and that you're at a 80% risk of bowel cancer and prone to other tumours and cancers and will require 6 monthly surveilence.
It was a lot for us to come to terms with, but we got through it all and Russ was there for me.
Dad lost his battle in March 2012, 3 days after my 21st birthday and Russ supported me through my grief.
Wow went into administration and Russ was made redundant in April, and he struggled to find work. I was able to pick up extra shifts but things were so difficult. I was finding my health especially my bowels deteriorating and I was in constant pain, but I had to keep working or we would have lost everything. I lived off of our credit cards to help make ends meat, as I was now needing to work enough to cover 2 incomes.
In September Russ thankfully got offered a job with a well established company coming to Coffs and it meant I could reduce my hours so I could finally go to Doctors appointments and catch up on colonoscopies.
After a few months on the waiting list to see a gynocologist, he booked me in for investigative surgery the following week as he discovered I had a large mass on one of my ovaries.
So I had a colonoscopy on Oct 8th and a laporoscopy, cystoscopy and hysteroscopy done on the 10th and it was discovered I had severe stage IV endometriosis with my surgeon saying "it was one of the worst cases he has seen in his career and in someone who was 21". I had a 15cm round enometrioma removed off of my left ovary along with the lining of the ovary, a couple of 7cm masses removed and a hundred 1 and 2cm sites removed as well.
Because of the extent of the damage I was placed in a medically induced menopause for 6 months and it was horrible. I was so sick and it took me a few months to recover from the surgery (sex was a no go, just hurt too much and still does) and I made the decision to stop working so I could recover and focus on my health. Russ was great about it and was so supportive and did everything to help me get better.
The week I finished up working (was Nov 24th) I found out the results from my colonoscopy, which showed the polyps in my bowel and rectum were in the early stages of becoming cancerous and I had an estimated 6 months to have my bowel removed before the cancer fully turned and spread. I was told I would need a permanent ileostomy.
The start of 2013 involved a lot of appointments with stoma therapy nurses and surgeons to ensure I understood what was going to happen. I was really struggling to come to terms with the idea of having an ileostomy and knowing it will be a lifelong decision was rather daunting.
Heck, all I wanted to do was be a normal 21 year old and I felt that my health was taking a lot of normalcy away from me.
So the surgery was scheduled for April, which was cancelled just as they were about to put me under and rescheduled a month later at the main hospital (for safety reasons) so it meant another month of trying to process it.
Russ was incredible through all this, he came to all my appointments and even asked to be shown what to do to help me do a bag change and wanted to be involved. He was there when I had my surgery and helped me to get out of bed and walk around (which was so painful) but he also would come and visit me every day for the month I was in hospital even after he had been working all day and would take home clothes to wash and bring me new clothes the following day, he would even help me to shower.
And no matter what has happened, he has never seen me as gross or disgusting because I have a stoma and continues to be attacted to me and love me unconditionally.
In 2013, I also developed acute recurrent pancreatitis which meant a lot more visits in hospital
This year wasn't as intense with as many surgeries but still had a lot of pancreatitis visits to hospital.
It was also discovered in July that year that there was a large abdominal mass, and was sent to Sydney for investigations and ordered to have PET scans, which after reviewing the October PET scan the doctors wanted me to repeat it in Feb 2015, so it was months of waiting to see what these tumours were.
In Feb' I had the repeat PET scan which showed there was activity on my thyroid, breast, multiple tumours in my abdomen as well as the bigger tumour now completly blocking my left kidney. This meant being admitted into hospital for further tests which went over a period of 5 weeks. I was in hospital some 800kms away from home, and it was really hard for Russ being home working and he wasn't coping trying to come to terms with everything. But in true stubborn male form, he wouldn't talk about it all either.
He helped me through my thyroid surgery and I wasn't very well and he helped me to shower and take care of me. When he arrived the morning after my surgery I was still sedated with a ventillator attached and tubes hooked up everywhere, he didn't cope well seeing me how I was and when I saw how I looked even I was worried.
I just found out I will be needing brain surgery again, and still waiting to see if my desmoid tumours will shrink or if I will need chemo, but it has made all the difference knowing that no matter what happens my husband will be there to help me.
He works so hard to help support us while I haven't been able to return to the workforce and he is great at putting up with my mood swings, some days I am coping but other days I am a mess, and he doesn't judge me. He always knows the right things to say!
But in the 5 years I have been married and been chronically sick, I have learnt 5 very important things:
A huge thank you to my husband for helping me through the last 5 years, without you I don't believe I would have made it. You're my hero x
Friday, July 17 2015
NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.
Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!
You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).
But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?
If you guessed having a huge bag leak then you guessed correctly!
I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".
See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.
I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.
I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.
But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...
5 ways to be better organised for a meeting/work when your stoma bag leaks
#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!
#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).
#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
#4. Always carry some scented garbage bags in your handbag and stoma kit, so that if you have to dispose of your bag and there isn't any bins around and you have no choice but to carry your soiled stoma bag in your handbag until you can find a bin to dispose of it in.. at least it will help mask the smell a bit. Just soon as you find a bin, dump that shit (LITERALLY).
#5. If you have had to leave your meeting and people notice you have been gone for a length of time and start commenting (and rather then saying what really happened, unless you want to) just pull out the period card... no one especially men will ask more questions and your female co-workers will just look at you with an empathetic tone that says "I totes get how you feel".
I really, really hope that no one finds themselves in any situation where you have a bag leak in public, let alone at work or in a meeting. But I hope that this guide helps you to be better prepared for the worst case scenario. And by having these measures in place, it will help you to be more calm and collected when the 'shit hits the fan' and also helps put your mind/anxiety at ease.
p.s have you ever found yourself in a situation where you had to do a bag change or had a bag leak and it was the worst possible timing? If you are brave, feel free to share your story in the comments below. You can always post 'anon.' by simply writing this instead of your name.
Tuesday, July 07 2015
We are so lucky here in Coffs Harbour that there is an abundance of restaurants and cafe's open early in the morning right through until after lunch and often serving all-day-breakfast, and then there is almost as many places open serving dinner. There is a lot of variety to choose on depending on what it is that you like to eat and your budget. We also have some very beautiful surrounding towns not too far from Coffs and have some great shopping and local attractions.
The 'Clog Barn' offers the most delicious pancake stack for approx. $13, while the Twisted Sisters Cafe at the Jetty has an area for the kids to play while you catch up with friends over a well deserved coffee and cake. The food is pretty great too and they have a range of locally made products available to purchase as well, locals supporting locals is great!
Have you ever been on holidays and you actually WANTED to cook? Well... Me neither (lol)
I know how frustrating it is though, when you want something yummy and fulfilling for dinner, are on holidays and you have no idea on the best places to eat OR the places that offer GREAT meals at affordable budget friendly prices.
That's why I thought that I would do this post, and help share my part of Australia as a local with those who might be on holidays and visiting Coffs Harbour and the Coffs Coast and/if you are a local who is wanting to know where they can dine for under $11!
Here is my list of 11 places to eat for under $11.
Breakfast with a view
Plenty of parking available, and only a stones throw from the beach to go on a stroll after Breakfast.
If you're in Sawtell, or wanting to go and have breakfast somewhere, take the drive out there. Only a short drive from Coffs and some of the most beautiful beaches and views from the headlands and lookouts. While you're there stop by the Wholly Cow cafe and take advantage of the awesome $10 bacon + egg burger and coffee deal. Friendly staff and I just love the vibe you get when you walk through the doors.
Lunch for under $11
Hogs Breath Cafe $9.90 lunches available Monday-Friday, and these are pretty big meals! My husband loves the smoked BBQ beef wrap which comes with the delicious curly fries, while I like the grilled chicken and ranch burger with curly fries.
This would be my favourite Chinese place to go to for lunch or dinner in Coffs, and they have beautiful lunchtime specials for just $9.95 including fried rice or crispy noodles. Located in Park Ave across from Woolworths.
There is this quaint and homely little cafe about 20-30mins drive from Coffs Harbour situated in the village of Bellingen or as the locals know it as 'Bello'. The Black Bear Cafe situated on Church St, is home to the $11 Friday Pieday specials where you'll enjoy a locally baked pie, salad and a tea or coffee. What a bargain at $11!
The Plantation Hotel, on the highway in the heart of Coffs would be our regular place to eat with their $8.50 lunches and dinners, and it is such a good atmosphere with Tuesday nights being family nights and entertainment for the kids, and the kids can even make their own pizzas! I love their chunky battered fries they serve too.
There is this great and unique venue in Coffs down on the Jetty strip called element bar created within a modern/rustic/urban industrial space and is the place to be. With not only a great selection of food at a great price, they also have a range of drinks and cocktails to suit every preference along with amazing LIVE music.
While there are a lot more restaurants and cafes in the area than the 11 places I mentioned, this is a list of my top 11 choices for eating out in under $11, and if you have your own recommendations within the local area, please feel free to comment these below.
I feel blessed to live in such a beautiful area of Australia, and I hope that you find this guide to affordable places to eat while on holidays useful. Be sure to stop by the Solitary Islands Aquarium, and the Dolphin Marine Magic and get a kiss off of a Dolphin!
I highly urge you to head to the Woolgoolga headland during winter and see how many whales you can spot as they migrate north.
It won't take you long to fall in love with the Coffs Coast!
Tuesday, June 30 2015
NB: THIS IS A SPONSORED GUEST POST
In life, we all have our regrets and in hindsight wished we could go back in time and with the knowledge that we know now and not repeat the same mistakes again. I have many of these moments where I wished I did things differently or better and one of them was going to see a financial planner when I was 18 or 19 and something that was in place before I was married.
You see, not long after my wedding my dad broke the news that he was terminal with bowel cancer and that his type was caused by a rare disease called Familial Adenamatous Polyposis (FAP), which was caused from a mutation of the APC gene (a tumour supressor gene) and that it was also genetic. I underwent tests and was confirmed that I too had this disease, and as I was a newlywed I decided to apply for life insurance and was rejected on the grounds of the condition and as it is something that I have seen numerous insurers about and none can find an insurer willing to insure me as I am at high risk of cancer and more than likely will die earlier than healthy/normal peers my age.
Then I got sick in 2012 with severe endometriosis and required surgery to remove a 15cm round mass off of my ovary along with the lining of said ovary and removing/excising hundreds of sites of endometriosis. My surgeon said it was one of the most severe cases he had seen and especially in someone who was only 21. Because of the extent of the damage I was placed in a medically induced menopause which was truly horible. It made me so sick I was unable to work as I had these insufferable migrains and the nausea and hot flashes were cruel.
The week I stopped working was the week I was told that my bowel was turning cancerous and needed to have my bowel removed. So either way I would have been forced to stop working as I was told I needed 12 months off of work to recover, and then I was diagnosed with pancreatitis in 2013 which meant every other week I was in hospital for 7-10 days undergoing treatment for that, and then the desmoid tumours were diagnosed along with the thyroid cancer this year has meant that I haven't been able to return to the workforce as I am just not well enough to be considered reliable for work.
I can tell you the last 3 years have been hard financially, emotionally and physically and one thing I wished I had in place was life insurance to help me financially while I can't work, and money has been so tight and often stressful. I am just thankful my husband can work so hard to provide for us and support me while I am unable to work.
I really wished I had some sort of security in place, and it is something I hope through my mistake you will consider.
So I asked our friends over at Life Insurance Comparison to help explain how life insurance can be used while you're alive and become ill or disabled, and Sally has written a great guest post for us on this topic.
How Life Insurance Can Help If You Become Ill or Disabled
Wondering how you'll pay the bills if the main earner in the household gets ill, has an accident or dies can be a hugely stressful experience that can be avoided through life insurance. At Life Insurance Comparison, we're here to help you to navigate the often confusing world of life insurance so that you can get the right protection for your needs. We'll work with you to buy the right amount of cover and the most appropriate type of product to support your family if the worst happens.
When you first think about life insurance, what comes to mind? If your initial thought was to with death, you may be unaware of the full benefits of life insurance. Many people mistakenly believe that life insurance only comes into its own if the policyholder dies but it can actually be an invaluable form of financial support if you become seriously ill or disabled and cannot work as a result. None of us want to think about the idea that we might be unlucky enough to experience this but it pays to be prepared.
In this post, we look at the ways in which life insurance can offer peace of mind if illness or disability occurs during the lifetime of the policy.
Life Insurance and Illness
If you become ill and are unable to work because of this, the subsequent stress could make your situation worse. Even if your lack of income is only a short term proposition, you could be under severe pressure to make ends meet if you don’t have savings to fall back on to tide you over. Fortunately, life insurance can provide an income to ease financial stress.
The exact nature of this income depends on the type of life insurance product that you buy. Income Protection Insurance will provide regular monthly payments that can be anything up to 75 per cent of your usual salary, which can be used for day-to-day living expenses while you are not working due to illness or an accident, while Trauma Insurance offers a lump sum payment if you are diagnosed with one of the medical conditions that are covered by the policy.
You’ll therefore need to think carefully about the kind of life insurance protection that you would want to have in place if you were to become seriously ill or disabled. Would you prefer to have a regular income stream coming in each month that can be used regardless of the situation? Or would you rather receive a lump sum payment if you diagnosed with a serious and traumatic condition such as cancer, a heart attack or stroke?
Life Insurance and Disability
Life insurance can also help if you become disabled and cannot work. In particular, Total and Permanent Disability (TPD) cover provides a lump sum payment if you become permanently disabled and this stops you being able to work. This type of life insurance cover is usually needed if a professional has confirmed that you will never be able to work again due to a new (and not pre-existing) disability.
How Much Life Insurance to Buy?
Underinsurance is a huge problem in Australia in general, and this is definitely true for life insurance. This is because many of the Australians who do have life insurance don’t have enough cover to provide full peace of mind if the worst were to happen. You may already have some degree of life insurance through your superannuation fund but this is usually extremely basic and does not offer much protection at all. To be safe, you’ll need to have additional life insurance cover in place to fully meet your needs so that you are not caught out financially if you need to rely on the income.
With Income Protection Insurance, you’ll want to safeguard as much of your salary as you can afford (up to 75 per cent of it) so that you can still experience a good standard of living while you cannot work.
With Trauma or TPD cover, you’ll need to make sure that your lump sum payment is substantial enough to cover everything that you would want. You’ll therefore need to think about how much you would realistically need for regular outgoings and also factor in medical and rehabilitation expenses (if you don’t have health insurance that would cover some or all of these latter costs). Trauma insurance is generally the most expensive type of life insurance but it can turn out to be the most cost effective if you need to call on it.
Ideally, you should look to buy as much life insurance as you can realistically afford so that you are less likely to be underinsured. If you want the lump sum payment to be able to act as a long term source of income, this will obviously be more expensive to buy but would be very useful if you are unable work for over a year due to serious illness, an accident or temporary disability.
Thank you Sally and Life Insurance Comparison for explaining how beneficial it can be to have Life Insurance while you're alive! If you found this post helpful (or any on my blog) please feel free to leave a comment below.
Saturday, June 13 2015
There are some things in life that people shouldn't have to endure, but thankfully there are organisations out there to lend a much needed helping hand when you need it.
When I received my Cancer diagnosis earlier this year, Redkite were there for me and without their support I am certain my journey would have been completely different.
Redkite were there for me when I was alone in hospital for over a month in Sydney, 800km south of home.
Before I was referred to Redkite by the hospital social worker, I had seen Redkite on tv but never actually knew what it was that they did or how they helped others. Little did I realise that they were an amazing organisation helping young people aged 0-24 with Cancer and their families.
Here are 5 ways RedKite helped to make a difference:
#1 Red Duffle bag filled with goodies called a support pack
When my youth support worker from the RPA Youth Team came in carrying this huge Redkite duffle overnight bag, I thought it was the coolest gift. Inside the bag was some amazing essentials that made the biggest difference to my hospital stay, and also since coming home.
I take the blanket with me everywhere I go and snuggle up with it everyday, it is so soft and warm. I also use the bag heaps as well, often accompanies me to hospital.
#2 Financial assistance in the form of Coles or petrol gift cards
#3 Education scholarships
These education grants can be a huge help if you're studying and help you to achieve your goals or ambitions. For more information click here.
#4 Dare to dream scholarships
#5 counselling and help
Redkite can be contacted via 1800 REDKITE (1800 733 548), Monday to Friday, 9am – 7pm AEST or firstname.lastname@example.org.
Did you also know that they offer help and support to help you return to studies or the workforce? They can offer an individualised plan for 15-24 years who've had cancer and are wanting to return to studies or work. They work with you through setting a range of goals and a realistic plan to help you achieve them.
I would like to say a huge thank you to Redkite and for everyone reading this who donates and supports them. Their work that they do to help support young people like me who have had cancer is so important and has made the world of difference to my life. I will always be grateful for the support and help.
Disclaimer: I wanted to write about my experiences with Redkite not because I was asked to or felt obliged to, but because I don't know how I could have gotten through this year without their support and help. I am sharing my experiences as they have made the world of difference to my cancer journey and I know first hand how important their work is. Please donate and support them so that they can continue helping young kids with cancer and their families.
Sunday, April 12 2015
NB: This is a sponsored post
When I was 19 and was newly wed (literally a month before) I had my first consult with my colorectal specialist as I had just been diagnosed with Familial Adenomatous Polyposis (FAP for short). FAP is a rare inherited disorder which occurs because of a mutation of the APC gene. For those (like myself) that aren't experts on human anatomy and physiology, the APC gene (Adenomatous Polyposis Coli gene) which is known as a tumour suppression gene, is responsible for suppressing tumours in the colon and digestive tracts. So when you have a mutation of this gene, it in turn significantly increases your risk of not only colorectal cancers but other cancers too.
I only found out I had this disease as my dad had been diagnosed with terminal bowel cancer which was caused from the FAP.
So it was in this initial consult with my amazing colorectal surgeon that he asked me if I had Private Health Insurance, and when I replied that I didn't he said to me "First thing to do when you leave here is to get yourself covered. You're going to need it in the years ahead".
So I left his office and started researching different providers and the main thing I was looking for in my cover (at the time) was to be covered for colonoscopies and gastroscopies and also to find which one I had the shortest wait on to claim for a pre-existing condition, which was 12 months (some are 18-24 months).
I became overwhelmed with my research and really wished I had of gone through a company that specialises in health insurance comparisons, such as Health Insurance Comparison, as it would have made things so much easier. Instead, I went old school and called every provider that came highly recommended or I had heard good things about. I ended up going with NIB, as they were the best fit for me and my situation and have had my cover with them for 5 years now (but still good to compare what all the providers can offer you).
There are different levels of cover to suit each individual's health and situation which fall under Hospital and/or Extras. Hospital cover, refers to the cover needed for hospital admissions or proceedures (there are some exclusions which you will need to find out before getting a policy, for example I am not covered for pregnancy or IVF related, but covered for most proceedures). Extras cover, refers to things that aren't covered by Medicare and includes things like optical, dental, chiro, physio, psycology, weight loss programs and some non PBS medications (there are more inclusions depending on the level of cover you need).
One thing that I didn't realise before I was 19, was just how beneficial having health insurance could be. I always thought that if I had just a medicare card that it was enough and to be honest I thought it was an expense I didn't need.
"But once I got the Private Health Insurance cover and have had it now for 5 years, I have learnt just how wrong I was when I thought I didn't need it!"
Here are 12 ways that having Private Health Insurance (PHI) has benefited me over the last 5 years..
#1: I get to choose who my treating Doctor is....
#2: By using my PHI in a Public Hospital, I am actually helping the hospital!
n.b: when you are admitted as a Private Patient in a Public hospital, usually you don't need to pay any out of pocket expenses such as your excess, but it is always important to double check with your hospital and policy provider.
#3: In a Public Hospital, you will get some great freebies if you use your PHI!
#4: You can sometimes get your own room.
#5: When you need a surgery, you don't have to worry about long Public wait lists.
#6: You can sometimes get your glasses for FREE*
#7: Speaking of extra's cover, how painful is a trip to the dentist on your wallet?
#8: A ride in the Ambulance can become rather costly, but if you have PHI it can be FREE to you.
#9: Staying in a Private Hospital can be quite expensive if you aren't covered.
#10: Sometimes we need a little EXTRA help...
#11: You could be paying LESS in Taxes!
#12: If you take your policy out before you turn 30, you'll avoid paying the LIFETIME LOADING FEE!
My advice to you....
Thanks to Health Insurance Comparison, you could win a year's worth of PHI! Click the ad below to find out more!
I hope that this is a helpful guide into how beneficial having PHI is for me, and I hope this helps you to know a bit more about how it can help you too!
DISCLAIMER: While this post was written by myself about my experience in how beneficial PHI is to me and all views expressed in this article are mine, this post is not affiliated with specsavers or NIB but was written for Health Insurance Comparison.
Tuesday, April 07 2015
When I was diagnosed with cancer earlier this year I did so much reading and research and read every pamplet I could find related to my cancer.
But there was one thing that I learnt about cancer that wasn't in any of the brochures or books that I read... there wasn't anything that would tell me how I should expect to cope or the stages of emotions I would experience.
Just like the 5 stages of grief, I found there were 5 stages to my cancer diagnosis and journey.
#1 shock and denial
I remember the feeling of disbelief, that while I knew it was always a possibility it was only a 2% chance. I didn't think it would happen, especially at my age.
I remember hoping that it was a mistake and that it was made in error.
It wasn't until I called my family and husband back home to tell them the news that it really sunk it. It hit me all of a sudden and I just couldn't stop crying
#2 pain and guilt
All I wanted to do was take away their pain and tell them that everything is okay.
I didn't want to tell them just how upset I am/was or that I wasn't coping as I felt if I was being strong enough for everyone to see then they won't be upset, I felt if I were to show just how much I am hurting that they wouldn't be able to cope.
It was like an endless circle.
#3 anger and bargaining
I know there was bargaining (and still often happens) that I kind of put it out to the universe that if I were to win lotto I would donate to the charities that have helped me and then as good karma it should be enough that I have no more issues from this disease FAP that has caused havoc in my life and mysteriously get cured from all ailments... Then and only then, can I become a normal 24 year old... whatever normal is!
#4 depression, reflection and lonliness
You will have so much time reflecting on your life that it makes you so much more depressed. I turned the big 24 in March, and I always knew growing up that by the time I turned 24 I would have been married, had started a family, owned my own house, finished uni and had a great career... I turned 24 and all that I have out of my dreams of accomplishments is that I got married. I look back on the last 6 years since I left school and feel like an absolute failure. All I seemed to have mastered is being sick and being in hospital! Brain surgeries in 2009, endometriosis surgery 2012, total collectomy 2013, pancreatitis 2013-present and thyroidectomy 2015.
And the next person to tell me 'go for a walk' or 'you really shouldn't complain your life isn't that bad' might just get their head bitten off. Depression (having had it since I was a child formally diagnosed when I was 12) isn't something that you can just walk off!
One thing I can certainly reflect on is how much I have lost because of FAP and cancer.
#5 acceptance and hope
I know it sounds cynical, but I have to believe and accept that me going through all this serves a purpose....
The word hope is a noun, and it can be a pretty powerful word at times and gives off a strong desire to want things to happen as you want or expect them to. I learnt this week how upsetting it is when hope is taken away from you. I have been on a 3 month trial of temoxifen and sulindac to shrink my desmoid tumours invading my abdomen. I had my CT scan this week and realised the tumours haven't shrunk and are growing. I go back to Sydney next week and have it reassessed and hope (there's that word again) that we can find a treatment that works... I am mostly bummed because I was hoping for a miracle and that the tumours have gone away and that I could be experiencing a pain free day... I was so hopeful that this was almost the end of these tumours.
Don't forget that there is help out there...
RedKite is another amazing organisation that supports young people 12-24 with cancer and also offers financial assistance as well as counselling. To access counselling call 1800 REDKITE (1800 733 548).
Cancer Council also has a program called Cancer Connect where you can connect with someone who has experienced cancer and knows how you feel. You can call 13 11 20 to find out the different support available to you.
HeadSpace is a not for profit organisation that helps 12-24 year olds with mental health issues. They have an online help available as well as help at local centres.
Beyond Blue 1300 224 636 is the number to call to chat with someone or they have web/online chat available too. Beyond Blue are a great resource to helping you understand your depression or anxiety and has a lot of information on their websites.
Kids Help Line 1800 551 800
Lifeline 13 11 14
Tuesday, March 03 2015
Back on the 3rd of Feb, I had to head back down to Sydney for my next PET Scan (click here to read what to expect when you need a PET scan) and the scan showed that there was activity on my thyroid and in my breast/armpit (which is new) but it also showed there were new tumours just under my scar from my ileostomy, and some under my ileostomy as well as the larger mass was now compressing my Kidney.
My doctor saw me after my scan, had said he wanted me back in Sydney on the 9th to be admitted into hospital so they could undergo further tests and start treatment for whatever these tumours were (they were still speculating about what it could be). At this consult I was only told about the breast and the tumour blocking my kidney (I didn't know of the additional stomach tumours or activity in my thyroid).
So first came a team of Endocrinologists, who wanted to chat about my history and asked me about my thyroid and if I had noticed any changes. I mentioned to them that my neck at times feels a bit bumpy and sometimes it feels like I have trouble swallowing or that I can feel like something is pressing on my neck and I am choking.
I told them about my entire medical history and weight issues, and how I have seen some endocrinologists before who seemed more interested in taking my money then actually helping figure out what was wrong.
They told me that my thyroid showed up on my PET scan as an area of interest and that I would be going the following day for an ultrasound of my neck.
I had the ultrasound, and a couple more doctors came in and then they left and were chatting, and came back and told me that they can see a lot of nodules on my thyroid and that there are some enlarged lymph nodes. A doctor confirmed later that day that I have a multi nodular goitre.
They told me "it is probably nothing to worry about but we will do a biopsy to be safe".
The biopsy was the following day and was done in a special room where there was a CT, ultrasound machines as well as a lot of surgical gear. I had a FNA (fine needle aspiration biopsy).
I had to lay flat on the bed with my head tilted back so my entire neck was exposed. The Doctors then re-did an ultrasound to confirm that the lymph nodes and nodules they saw were the ones they needed to biopsy (there was 2 of main concern). They confirmed the lymph nodes were the correct ones and the biopsy proceedure started.
As they were biopsying each side I had to turn my head as far as I could.
They then applied the local anesthetic, which hurt a lot. It is a pretty sensitive and uncomfortable area.
Then they did the biopsies. They had to do several attempts at each of the two lymph nodes to make sure they had the best samples. There was also a cytologist there to confirm the quality of the samples under microscope.
Although they had numbed the area it still hurt and also was uncomfortable. Everytime they penetrated the lymph node and jiggled the needle about it was sending a shooting pain up my jaw, into my ear and into my head. It was like it was hitting a nerve. It was horrible. But as soon as they removed the needle, this went away.
After the Biopsy
After the biopsy was done, I was brought back up to my room and as my neck was so sore I asked for some ice packs to place on my neck. During the night my neck got a bit swollen and irritated, so I had some panadol and applied more ice.
My neck only hurt for a day or two afterwards and I just applied ice the entire time. The ice helped with inflammation and also to relieve the area of pain.
I felt as though I had been attacked by a lymph node sucking vampire!
The Results and What's Next
My results were back the following day (I just had gotten back from my breast biopsy) and was told that it was positive for Papillary Thyroid Cancer related to my FAP and I was just in so much shock I couldn't stop crying.
The doctor sat with me as I called my husband to tell him the news, and she told me that this is the best cancer to have out of all of them it is the most curable when caught early, and she started telling me about the surgery and what it will involve.
I know I shouldn't have been so shocked as when I was diagnosed back in 2010 with FAP I was told then that in a timeline of cancers it would go colorectal and then some people get thyroid, pancreatic and so on. I just always hoped that I was one of the luckier ones with FAP that just needed the total colectomy and that was it.
I am due to have my entire thyroid removed on the 30th of April, then I come back for the radiation weekend about 4-6 weeks after to kill any remaining thyroid tissue.
Stay tuned for what to expect with a breast biopsy and also a stomach biopsy.
I have been given some really useful guides by my doctors about the upcoming surgery and thyroid cancer which most can be found online from the cancer council's website, Another resource I read was or a really informative guide I found useful from Genzyme Australiasia.
Wednesday, January 21 2015
I seem to be driving my husband insane lately...... well more insane then usual.
Ever since I had my bowel removed and no longer frequent the toilet hundreds of times a day (that is no exaggeration by the way), that I have kind of become a self titled toilet creeper.
Now I don't want this title by any means, but now that I don't spend so much time in the bathroom and more so on the toilet, I am really starting to notice how long others spend on the toilet.
Which my husband says is driving him insane.
Reason being, is I am a strong advocate for bowel cancer awareness, bowel cancer screening but importantly that bowel cancer can happen to young people not just in older people (people over 50).
My husband, is having a 'half way to retirement' party in March for his birthday (my joke that he is old and turning 35... well there is an 11 year age gap afterall..), so I have become a bit paranoid lately that he spends too much time on the toilet and he needs to get checked.
Do you know how frustrating it is when you're waiting to go out to dinner, waiting to serve up dinner, or waiting to do something and someone is in the bathroom for an hour holding you up?
Well, that is how I feel and felt my concern was warranted. Rewind to 2009-2013, that was me!
Turns out he is just addicted to playing games on his iPhone, and as he works 8 hours a day it is the first chance he can play all day. Honestly, his routine is walk in the door, say hello, go to the toilet, then have a shower.
So while I felt my concern is warranted, and turned into a toilet creeper, I think my husband is okay.
But it doesn't remove my anxiety...
I think as long as I am alive I will be advocating that if things change and are not 'normal' bowel movements, that you should see your doctor. As early intervention and diagnosis is key for beating this dreaded and horrible disease.
Well I guess being a toilet creeper isn't so bad, as it might just save his life one day!
p.s Lesson for all those men (or women) who spend time on the toilet addicted to playing their games on their phones... your partner might just think you need a colonoscopy.
Monday, January 19 2015
I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.
If you have read my post of the 10 things they don't tell you when you get an ileostomy, you would know my 4th tip was that "your output will smell horribly", which it does. I made a comment about how you should "be prepared to have many cans of air freshner, and one in your handbag" for when your out and about.
So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.
So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).
For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...
So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.
So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!
It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!
Best of all, it is only $12.25 and comes in a 80ml bottle, and as you only need a couple of sprays/squirts at a time, you won't run out in a hurry!
Oh and did I mention it comes in a large variety of scents too?
Seriously though, this is my favourite item in my stoma kit!!
Sunday, January 18 2015
Are you looking at returning to studying on campus this year?
Well believe it or not that was some questions I had this time last year. I had just found out I had been accepted into a course I have been wanting to study for a few years and was worried how I could manage full time study as I now had a stoma.
So I thought I would share with you some tips/products I found that helped make my life easier when studying on campus, and a few of you have been emailing me this same question, so thought I best do a post for you all.
Sharing my 10 tips that made studying on campus with a stoma easier!
#1 Meet with the course coordinator or support officer BEFORE the study term kicks off
#2 Find the right bag/backpack
Some tips to remember when choosing a backpack:
#3 Don't have a heavy backpack
#4 Packing your stoma supplies
#5 Invest in a diary
#6 Pack your lunch each day
#7 Keeping your lunch and snacks fresh
Trust me when I say there is nothing worse than a yucky, hot, salad at lunch time.
#8 Keeping hydrated through the day
#9 Don't drive each day either take public transport or car pool
#10 Purchase a power bank for your phone
I purchased mine (a pink one) from JB-HIFI for around $40 and I take it everywhere I go when I am out and about, and when my phone starts looking tired and sick I just plug it in and give it a fresh bout of life!
I really hope that these 10 tips that helped me to study on campus with a stoma help you too!
P.S if you have a question or issue you want help/advice on, please send through an email from my website or a message via my facebook page. If my blog has helped you in any way please let me know!
Wednesday, December 17 2014
We all know that one person in the family that no matter where you go, they always forget to pack something!
In my family I am sure they all would say that person is me... I swear sometimes I would forget my head if it wasn't screwed on (lol).
I went away last weekend and in a rush packed my overnight bags and restocked my stoma supplies.....
I was in a rush and was rather fllustered and thankfully didn't have a bag leak as I just realised I grabbed the entirely wrong stoma bags!
So it got me thinking how many other people with Stomas are finding themselves stressed, flustered and overwhelmed in time for Xmas, and especially those who are heading away for the holiday season.. so I decided I would create a check list printable for you to download, print off and pack your bags.
Just like Santa, we need to make a list and check it twice!
I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!
If you think I have forgotten or left anything off the list please let me know!
Have a lovely Christmas, and don't forget to enjoy and cherish those loved ones in your life.
Wednesday, December 03 2014
This year would certainly be the first year I won't be running off to the shops on Christmas Eve and trying to find the right gifts for my very long list of people to buy for! Not only is it exhausting running around when you are sick, it can become quite stressful when there are people everywhere (if like me you have social anxiety) and guaranteed you won't be able to find everything last minute.
I decided I would try something different this year and actually started buying presents back in May, and I haven't even finished wrapping presents and my tree already looks full!
So I have had a lot of people ask me how am I so organised this year, and I thought I would share my 5 top tips with you!
1. Write a list!
I have created a FREE download printable for you to print off and fill in if you like! Print off as many sheets as you need!
2. Shop when there are sales on
Also there are some other HUGE shopping events each year like Click Frenzy (which only lasts for 48 hours), Black Friday and Cyber Monday (although being USA shopping events a lot of stores in Australia are now having these sales too!).
3. Wrap as you buy!
I know I have done this, and even remember as a kid that dad would have to take us out of the house for most of the afternoon/evening and keep us entertained so that we wouldn't annoy mum who was locked in her room wrapping presents for all the kids.
So I have found this year if I take a little time out of each day whether it is just 5 or 10 minutes and just wrap as much as I can. I pretty much have everything wrapped for now.
I have also found wrapping as I purchase to be rather helpful too at making better use of my time come Christmas Eve!
But there is also the added convenience come December 1 that charities set up a stall in the shopping centres and you donate money and they will wrap your presents for you! Not only will you be saving time yourself but also giving a helping hand to charities, and to me Christmas is about the giving and not so much receiving!
HOT TIP: If a store offers complimentary gift wrap, take them up on the offer! It is one less thing you need to wrap!
4. Take advantage of boxing day sales!
Boxing day sales is also another great opportunity to find bargains and put them away.
For the last 5 years my husband has asked me for a train set to go around the Christmas tree (if you're thinking he sounds like a kid, he is at heart lol). Well we have been eyeing off this amazing set that is normally around $300... well last year on oo.com.au I scored this exact same train set for $49!!
We got to put it up this year and as you can see from the picture above, it is a big set and I had one happy husband! He wanted to put the tree in one corner and fill the space with presents to resemble mountains and landscape for the train to go around... see told you he was a big kid at heart!
5. Shop online or take advantage of home delivery
I decided to avoid all that this year and have had almost everything purchased online and delivered!
Also given my health too I thought it was easier and less stressful to have everything delivered online. As I type this I don't even know if there is anything I need to go to the shops for except for food, but even with that you can get it all home delivered!
Bonus Tip: LAYBY, LAYBY, LAYBY
If you haven't looked into castle or chrisco before either, be sure to look into these as they allow you to order hampers and food through the year and it all gets delivered just before Christmas. It is like a huge Christmas food layby! It is pretty handy and I know many families who do this each year (some have the food last months and just store in the cupboard or freezer). The hampers aren't just food they also have electronics and all sorts of things!
These are my quick 5 tips to having a better organised Christmas this year, and hope these help you too!
If you have a tip for a better organised Christmas, feel free to comment below!
[Disclaimer: the stores or websites I mention above I have done so out of honestly using these sites and being very happy! I was not offered any payment or form of reimbursement for mentioning these sites. The only affliliate link is the Ozsale where as a member and refer people to sign up I receive a benefit such as $5 towards my next purchase.]
Tuesday, December 02 2014
It isn't very often that I have a moment or two spare to just sit and dwell on my thoughts... actually I try to avoid it if possible as it can often cause more harm then good.
It is moments like these that I often think to myself if I could go back in time and meet my younger self (gosh I sound so much older then 23 right now) what messages or pearls of wisdom would I share?
Here are my 5 things I wish I could tell my younger self:
1. YOU are worthy of being loved!
You will leave the store with neither a laptop nor his number, and will go home and feel sorry for yourself. You need that laptop as you will become so frustrated with how slow your much loved "Toshi" Toshiba laptop has become since recently finding itself in your bedroom that was inundated with flood waters. You try and perservere for 2 months with your Toshi gradually dying, and just try to work up the courage to return to that shop, hope the hot salesman that rejected you does not remember you (or see you) and that you will leave with a laptop.
But before you return to the store, be sure to cut your hair short and dye it a deep red/purple colour (trust me you will ROCK it) and then return to the store.
What you won't realise is just that once he turns and looks at you he will instantly recognise you and acknowledge you by name. You do let out a loud "oh fuck!" and try to hide your embarassment.
But my dear, don't fret because you will leave the store that day with not only a new Toshiba "Toshi 2.0" laptop but also with his number, which you arrange a date a few nights later.
You will soon realise what it is like to have met someone who is so caring and doting and would honestly take a bullet for you. He will surprise you and your family by sitting with you a month after you start dating as you go through brain surgeries over the next 3 months in hospital.
He will surprise you 3 months after you start dating when he calls and says "Guess what I just bought?.. A $5500 engagement ring!". You will be shocked and instantly feel upset as you thought everything was going great but he must of been in love with someone else as surely that ring isn't yours.
But it was, and surprisingly your overprotective father will let you become engaged at just 18.
You will marry on your 1st wedding anniversary, a ceremony that is low key and intimate with a bigger party/reception with your family and friends. The day will have its many hiccups, which you will just laugh about afterwards.
You will go through many, and I mean MANY obstacles in the first 5 years of your marriage which only will make the bond and love you share deepen. You will be paranoid that it will all become too much for your husband and he will want out, but he tells you to stop being silly and when he says he loves you, you can tell he really means it.
So while it may seem right now that you are alone and that you won't ever find the happiness that your friends have or feel like a freak at school because you are the only one without a boyfriend, you're prince charming is only a couple of hours away waiting for you in a computer store!
2. As soon as you are old enough, get life insurance!
See, what you (or our dad) don't realise is that deep down in our DNA we literally have a ticking time bomb within us.
You will have been told by Dad weeks before your wedding day that he is unwell but getting tests done. But you won't realise until your actually walking down the aisle arms linked that there is something seriously wrong. You pester him the whole time you are walking towards the waiting guests about what is wrong as you notice in 2 weeks since you last saw him that he has dropped a lot of weight. You keep pestering him and he will keep sternly replying "Not today Pumpkin" followed by "I am not doing this today, this is your day and we will talk about it after your wedding". You know deep down something is wrong but you put on a brave face and continue walking what feels like forever to your wedding. Be sure to cherish and take in the moments from that day.
A week after your wedding you get a phone call from dad asking you and Russ to drive down tonight for a "urgent family meeting". You know that in your entire life, not once has there ever been a family meeting. You know something is wrong....
You learn that your dad is terminal with bowel cancer and only told he has a matter of years with agressive chemo left. He waits until your siblings leave the room to process it all, and he informs you that the type he has is extremely rare and it is also inherited. The punch line is that he is confident you too are a carrier.
Now if you haven't organised your life insurance by this point you better do it now, as once the genetic testing and colonoscopies start in the next couple of weeks and confirming you do indeed have FAP, you will be void of any life insurances as it now is a known medical condition and the insurers are smart enough to know that FAP will more then likely lead to cancer. So you are too risky to be insured.
You will be overcome with guilt forthwith as you have nothing but debt to leave your husband if you were to die today. You feel terrible that you won't be able to help support him or look after him when you're gone.
You will have WISHED someone told you to get life insurance.... that's why I am telling you now!
3. Fight more for your health!
You will see doctor after doctor to try and identify why you have such bad pain, why you vommit for days, and why you have diarreah when you get your period. You will be told again and again that it is normal and not to worry.
You tell doctors for years that you are certain you have endometriosis, but only told that "young people don't get endometriosis" and that again "this is normal".
You go through this horrible time for years and you will give up on fighting for answers until you are 21. You will have been referred to this incredible OBGYN who after a thorough consultation with you and your husband, books you in for an invesitgative laparoscopy, hysteroscopy and cystoscopy the following week.
You go in for your surgery and wake many hours later to be told that "you have severe stage IV endometrisosis" and that "it is one of the worst cases I have seen in my career". You will be advised that due to the extensive damage caused involving removing a 15cm mass from your right ovary, 7cm mass from your uterus and hundreds of 1 & 2cm masses from your pelvic area, that it is advised to go through a 6 month course of a medically induced menopause to let your body heal.
You will have wished that you fought harder from 12-21 for answers, as this level of damage could have been avoided and possibly could have still allowed for you to conceive naturally.
Don't listen to the opinions of 1 doctor and demand to see a specialist.
4. Get health insurance
See, you never thought about health insurance until you needed it (just like life insurance) and as you will have learnt you have a pre-existing condition, you will need to serve a waiting period of 12-18 months before you can claim.
Ever heard older people complain about how horrible colonoscopies are? Well trust me when I say they are! You are going to need A LOT of these and there will be a few that needed to be done urgently and requiring you to pay $5k as you are still serving your waiting period on your health insurance and the public waiting list is too long.
But there are some great perks to health insurance! Like getting your own private room where available, having your surgeon/doctor of choice, getting the TV on free of charge, Having the paper delivered each day to your room and having proceedures done when they need to be done rather then waiting. Don't forget the health insurance pays for your ambulance rides too!
Oh and don't get me started on the private hospital! Imagine a resort, but it is a hospital... seriously! The nurses are so much less stressed then over at the public hospital and are so lovely and patient. THE FOOD is something you would pay top dollar for at a restaurant. My first night I had roast duck... I had never had such a delicacy before! There were even other awesome incidentals too like FREE wifi and Austar too!
But the best part of having private health insurance is the privacy and peace of mind. You know you have your doctors who know your case and you trust with your life, but also when you have your bowel removed when you're 22 you will find it much better being in a private room then a public room with 4 other patients (including men) and not having much support.
So be sure to organise it before it was too late, as it will save you so much money too!
5. Spend more time with Dad & understand just how much he loves you
Be sure to tell him you are sorry for all the things you were forced to do and wished you didn't.
Make him know that you love him and just how important he is to you.
When he lectures you for stuffing up, don't take it as him thinking you are a disappointment or a failure, take it that he cares enough about you tell you that you stuffed up and listen to his advice. He will pass on many, MANY words of wisdom. Listen to him as he know's what he is talking about and isn't just saying shit for the sake of it.
When he invites you camping or to do family stuff and you decline becuase you have to work, take the time off work because those will be memories you wished you had.
Laugh at his jokes and at his quirky and often embarrasing behaviour. You will realise how much you miss his laughter, and miss him everyday after he passes away.
Don't try and get his attention by doing things that will make him mad, and worst of all DON'T lie to him. Always be honest with him, he won't always believe it is the truth when it is, but it is so much worse when you keep things from him (like hiding a $900 fine you got and lost your license the day after you got it).
Appreciate just how much he cares about his kids and how much he is willing to help you when you need it. Appreciate that while your dream was to move to Brisbane and go to uni as soon as you graduated (so you didn't apply to the university closer to home) that your dad had other plans. When you ring to tell him you stuffed up big time and Brisbane was a mistake that you didn't get into uni, he will then tell you that he went behind your back and applied to the university closer to home and that you got a full commonwealth supported place and you start in 2 weeks. You will then realise just how much he loves and cares for you and even when he knows you are making a mistake, he still makes sure you have a plan B (even if he doesn't share that with you).
Just if you get angry with him because he won't let you go out with that boy you like (but knows he is trouble), wear makeup, or tries to be over protective - just remember that life is short and he won't always be around, so don't waste time being angry over little stuff just know he cares enough to protect you.
So younger self, while these are the 5 important messages for you I have some short/brief ones too!
As dad always would say "Always remember Pumpkin,
Monday, November 17 2014
I must admit that I hadn't always been much into eco side of life until the last couple of years.
Don't get me wrong I have always re-used, recycled and repurposed many things but wasn't until I was looking at returning to studies and looking for a lunchbox and lunch bag did I really start trying to practice more eco friendliness.
As you might be aware I have FAP (Familial Adenamatous Polyposis) which is an inherited cancer causing condition.
So as you could understand I am all about trying to reduce my susceptibility to cancer, so I made the decision to use bottles, containers and lunchbags that were FREE from BPA. I mean after all if something like a bottle or container is touching my food, I want it to be as safe as possible.
Now I know that the whole BPA issue is a controversy to many, please know this isn't the place to have the debate.
So imagine my delight when I learnt that there was a small business Little Shoppers on the Central Coast of Australia that not only was dedicated to providing eco friendly solutions for you and your family, but have come up with bamboo baby wipes that are affordable!
If you have been following my posts for a while now you may recall me mentioning a little stoma/bag changing tip I had was that I prefer to use baby wipes on my stoma and cleaning of the skin/area during a bag change.
Well, I had the priviledge of testing out a tester/sample pack of the bamboo wet wipes myself recently and these exceeded all my expectations.
I thought I would wait until my next bag change to test these out, and boy they worked wonders!
They were not only soft on my skin, but they were quite durable and thick too! I can tell you they did a fantastic job at cleaning and I didn't have to scrub hard at my skin to alleviate some of the waste, it was really surprisingly gentle.
I will warn you though that if you like using baby wipes for the perfume and scent, that these won't smell like lemon fresh or shea butter... these smell like, well BAMBOO!
Did I mention that these are pretty affordable too? They have a special offer of $2.50 a pack of 80 bamboo wipes when you purchase a box of 18 packets! What a bargain!
Normally when you hear bamboo you straight away think of the hefty price tag that comes with it but these bamboo wipes are not only good for your baby (or in my case my stoma) but good for your wallet too!
If you want to check out their range of bamboo wipes, click here to visit their online store!
When it comes to doing bag changes I can't help but feel guilty about disposing of my used stoma bag in the garbage bin (tied securely in a plastic bag). I just know there isn't more environmentally friendly options to dispose of our used bags, kind of like disposable nappies, but using these bio-degradable and bamboo wipes makes me feel like at least I am turning a shitty situation into at least a positive in helping the environment.
Disclaimer: All views expressed in this blog are that of my own. This post/review wasn't a paid sponsored post but a post shared on a recent experience when using the product. The product was kindly supplied towards goody bags for a recent charity fundraiser, one of which I received and had the sample packet of wipes in it. On occasion I do receive products or services in exchange for a blog post/review. I will only ever post reviews of products that I love and use and know it would be of value to my readers. I won't post negative reviews.
Sunday, October 26 2014
Last week I found out that Feeling Ostomistic had been chosen as a finalist in the 2014 BUPA blog awards under the social good section.
I have had a lot of people ask IF I won what would I plan to use the money for, or more what would I do with it.
I have plans to further my studies (currently studying a Diploma in Community Services) but I want to go on to study a Diploma in Counselling.
I want to further the support my blog offers to include niche counselling of young people living with an Ostomy or associated health issues.
I know first hand how there can be days where living with a stoma can be quite overwhelming but more so with the other health issues that goes with it.
I want to offer counselling from a supportive place that when I say "I understand", I really mean that I understand!
There is nothing more frustrating then trying to speak to a counsellor and get support and when you're talking to them they just have a look on their faces like they have no idea how it feels or how you feel as they haven't had that experience.
And that is where I want to be the point of difference!
I want you to feel supported, understood but I want you to feel empowered that none of this defines who you are.
But importantly I don't want you to feel alone!
So winning this award would mean a lot of support and awareness to those who need it most.
Please help me make this vision a reality and VOTE for Feeling Ostomistic in the SOCIAL GOOD section today!
Everyone who votes goes in the draw to win an iPad Mini too! All you have to do is enter your email, that is it!
Voting ends 7/11/14 and awards night is 14/11/14, I will keep you in the loop!
Friday, October 24 2014
I have been waiting a while to publish this blog post as I didn't want to ruin the show for anyone who has yet to watch the latest season of the show Winners & Losers (aired on 7 Tuesday Nights at 8.40).
But although this season had the usual up and down moments of emotion, there was something that really stood out to me.
I wish that I could say that I have always found the show relatable, but unfortunately I haven't had the luck of winning the lotto.
But there was something this season that made the show more relatable to me...
Have you ever sat there and watched a show or a movie and just either thought or said out loud the occasional 'uh-huh' or 'yup!'?
Well that was how I felt when watching 'Jenny' go through her diagnosis.
I really want to commend Melissa Bergland (who plays Jenny) on her very convincing and 'life like' portrayal of emotions felt when you learn that you might need genetic testing for a horrible inherited cancer gene that is prominent in your family.
It was so good to see the process and emotions felt from the time you undergo genetic testing, to waiting anxiously for 6 weeks for the results to come back, to meeting with genetic counsellors, to meeting with surgeons, to having 'that talk' with your family, to having the surgery, and to the grief that is felt after you lose a part of yourself.
I remember when 'Jenny' was first told that she did indeed have the gene, there were friends on facebook that were complaining about how 'over the top' or 'how exaggerated' the feelings/questions and emotions expressed were.
But you know what?
That really made me quite angry.
People who haven't had to go through the torment of learning you could have this inherited cancer condition really have no idea of the emotions or thoughts that race through your mind.
I fired up and said how accurate the portrayal was and so relatable as I HAVE BEEN THERE, I have asked those questions, felt those emotions and had "that talk" with my family.
When we first learned of FAP:
I remember when I first learnt that this inherited cancer causing disease was in our family- it was a week after my wedding (2010) and my dad called an "urgent family meeting".
He broke the news that he had terminal bowel cancer and that his form was caused by a condition called FAP that is a rare inherited disease and that we would all need to be tested at some stage down the track.
I remember looking around the table at my dad who looked so scared, and to my siblings whom some were trying to comprehend what just happened and the younger ones who didn't quite understand what was happening.
I remember my dad looking at me accross the table, squeezed my hand and mouthed "it will all be okay Pumpkin".
I was 19 at the time and my paternal siblings (then) ranged from 17, 15, 13, 11, 9, and the youngest was 8.
Dad dismissed the kids from the table as he wanted to chat to me and my husband alone and he said he had been speaking with his doctors about the symptoms I was already showing and it was suggested that I get tested ASAP.
The getting tested/diagnosis process:
I went for the genetic test that following week, which was a blood test and waited anxiously over the next 6 weeks for the results to come back.
That day came and I went into the appointment with a feeling in my gut that I was about to get the news that we dreaded but kind of prepared myself for the worst.
It was confirmed I too had FAP and the geneticist went over what happens next, what having FAP will mean for me and my husband, and what it would mean going forward.
The following week I had my first colonoscopy and gastroscopy (boy was that a first-time experience I won't be forgetting in a hurry) and a couple of weeks later it was confirmed that there was large polyp growth in my bowel and rectum which had spread to my stomach, duodenum, GI tract within 6 months.
I then had to have appointments with OBGYN and fertility specialists to talk about the future possibility of having a family and what we wanted to do as FAP is a 50/50 chance of being passed on. We went over plans of doing IVF where they can screen each embryo for FAP and also met with colorectal surgeons to discuss surgery options.
Initially it was thought that my case plan could be loosely based on my dad's history in the sense that he was 39 when he was diagnosed with FAP/terminal bowel cancer and that I too could have the 'late onset' which would mean delaying surgery until I was around 26-30... this meant I had 7-11 years to start a family, I was in no rush....
Then in 2012 my whole world was turned upside down.....
In march (on the 10th) I celebrated my 21st birthday and on the 11th my dad celebrated his 41st birthday. The following day we were told that he doesn't have much longer to live it could be a day or it could be a week. That night he passed away at around 3am the following morning.
Then in October on the 8th I had my routine 6 monthly colonoscopy and two days later on the 10th had a laparoscopy, hysteroscopy and cystoscopy and subsequent pelvic surgeries where it was confirmed I had severe stage IV endometriosis and due to the level of damage was placed in a medically induced menopause for 6 months while my body tried to recover.
A month after the colonoscopy, the test results of the biopsies of my colon returned and showed that my bowel was beginning to show early signs of turning into bowel cancer and that I only had months to have my entire bowel removed before the cancer fully turned and spread.
I was struggling with the news and tried to keep it to just my husband and myself as I didn't want to burden my family who were still grieving the loss of my dad, being the first Christmas without him and not to ruin anyone's Christmas I bottled it all up.
Inside I was going through the range of emotions there was:
What made it hard was when I eventually did decide to tell family about the diagnosis and impeding surgery, it was about 1 month before it was all due to happen.
Most were angry at me that I kept it from then, but there were the remainder that felt that "the surgery was uncessesary" or that "it is too drastic surely there is a better option, go get a second opinion".
But the reality was I could get my bowel removed now BEFORE it had turned into cancer OR wait until the cancer turns, have my bowel removed and hope that it was caught and removed early enough.
I felt that it was better to be preventative then to be sorry- and I knew just how 'Jenny' felt. I even cried with her, because it was that real and too close to home for me- that I felt like the show just "got" me.
The grief experienced when losing a part of yourself:
After Jen's surgery there was an episode where she grieved for what she lost-her boobs... now some reading this might be thinking "c'mon that is just ridiculous grieving over losing your boobs".
But would you believe me if I said after my surgery I grieved over the loss of my bowel?.... because I did.
I know it probably sounds weird and gross to be sad about losing your bowel, but it was that I felt a part of me was missing (although literally was) that with it I felt like I lost my independence, I grieved for the loss of my dad, and I threw the biggest bloody self pity party I ever have had. It was so emotional and such an ordeal that I had to learn a new way of what my life would be like and it was a lot to process and adapt with.
Mostly it was hard to adapt as for 21 years if I needed to 'do a number 2' I would go to the toilet and do my business, but with no longer having my large bowel I had to adapt to the idea and thought that I would essentially be going 'number 2' 24/7.
Although it has been a few years now since my initial diagnosis of FAP or almost 18 months since my surgery, those emotions are still there.
Thank you to the writers and to Melissa Bergland....
So I thank the writers of this latest season of Winners & Losers for helping to show the real side of learning what it is like to go through genetic testing and preventative surgery, and to help people like me feel like someone simply 'gets them'.
Thanks again Melissa Bergland for your accurate portrayal of the emotions experienced.
P.S has there been a show that you could strongly relate to? If so leave a comment below of the show and what made you feel so relatable to it.
Where to get help:
Like my family, if FAP is something that you are affected by or wanting some more information and support you can contact the Cancer Council who have information that can help you, and also has a heridetary cancer register that reminds you when you are due for your next colonoscopy. Find more information on FAP via their website.
Like the Gross Family, many Australians are affected by Breast Cancer.If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women - 1800 500 258 or www.bcna.org.au.
Monday, September 29 2014
Today I went for my first ever PET scan.
Now before you ask... no it wasn't a scan for my pet, I don't even have one.
The PET of PET Scan stands for Poistron Emission Tomography.
Why was I needing this scan done?
I saw a specialist in Sydney in August on the 26th, and he said he needed to consult
Up until Last Tuesday I hadn't heard anything which I assumed 'no news is good news',
They thought it was best if I went for a PET scan ASAP as they think that the mass in my
Normally I am pretty good at holding myself together and not letting things get
So by Wednesday I had an appointment for the following Monday Sep 29th,
I know leading up to the scan I had no idea what to expect as I only knew two
But I knew it was important if I blogged about this experience in the hopes of not
What to expect when having a PET scan?
Now first things first, this scan is a non-evasive scan and doesn't hurt
1) You will be advised of your fasting requirements such as the last time
2) When you are called through you will be asked to change into a
3) You will be weighed and your height measured to confirm the right
4) You will be ushered to a small, quiet room where there is a recliner
5) You will be told to remain calm and relaxed over the next hour so
6) Once the hour is up you are asked to go to the toilet before the
7) After the whole body scan is complete you will be taken to
So all up the process took around 2-3 hours, so just be sure to
You also will be advised to avoid contact with anyone who is
So I hope that this is informative and can help you to prepare
Saturday, July 12 2014
There are many disabling and debilitating health conditions that are considered 'Invisible' illnesses.
But an 'iNVISIBLE' illness is referred to an illness that you can't see with the naked eye,
SOME invisible illnesses are:
You would be surprised the amount of judgemental things I hear daily from people.
10 THINGS AVOID SAYING TO SOMEONE WITH AN INVISIBLE ILLNESS
1. "But you don't look sick!"....
But it is also important to keep in mind that while i don't look sick on the outside, internally I could be in agony or discomfort- quite often feels like there are hundreds of knives stabbing me internally.
2. "Must be good not to work!"....
I hate that I am having to expect my husband to work so hard and that the medical bills and other expenses are piling up. I really feel bad enough about my situation without you making me feel worse. If I COULD work right now I would in a heartbeat, but most employers aren't empathetic or understanding when it comes to employees being sick- trust me!
3. "Maybe it is all in your head"....
.....Now on the topic of what is in my head... I know there is certainly a brain up there, as I have seen my brain (along with millions of Australian's) when my brain surgeries were filmed on the RPA tv show.
4. "Surely it isn't that bad"....
Also its not an exaggeration when I say that endometriosis is a bitch! When I get my monthly visitor, guaranteed I will be in bed for days as the pain is excruciating, the nausea and vomiting is debilitating and the bleeding is so heavy that on top of my really low iron levels that it makes me so much more tired. It also isn't an exaggeration when my Doctors are considering a full hysterectomy due to the pain and complications from my endometriosis.
5. "There are people worse off then you"....
6. "If you get more exercise and lose more weight"....
Before I had my brain surgery I was a normal size 14/16 and I was happy, I know I wasn't stick thin but I was happy with my curves and didn't let that define me. I spent 3 months in hospital having multiple brain surgeries with the last 2 months fighting a dealy MRSA infection that was on my brain and throughout my blood. I could have died! The only way they could fight the infection was to pump me through with high doses of steroids used to fight certain cancers which little did I know caused significant weight gain! I was discharged from hospital 40kg heavier. Can you imagine the shock when all the clothes in my suitcase were some gorgeous tight fitting skinny jeans and tops that no longer fitted. If it wasn't hard enough almost dying I had to adapt to how people were treating me.
With every new health obstacle it gets harder and harder to lose weight as the next is more debilitating then the last. But please understand I am trying to do what I can when I can. I am sure if you felt the pain of hundreds of knives stabbing your stomach you wouldn't be exercising either!
7. "Change your diet"....
8. "You're just depressed you need to get out more!"....
But you also don't realise that I suffer from social anxiety that it is hard for me to want to be social or be around other people. But please don't make me feel like being I can't be upset when I don't feel I am coping.
9. "Aren't you feeling better yet?"....
10. "You are just wanting attention/sympathy!"
So please think carefully next time you speak to someone living with an invisible illness.