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!
Thursday, October 04 2018
Trigger warning: Talks of mental health, vulnerability
You: How are you?
You: Ok. What's up for today?
- - - - - - - - - - - - - - - - - - -
I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties?
There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.
Y: How are you?
Y: Hmm... Do you want to talk?
- - - - - - - - - - - - - - - - - - -
Hi everyone this is Russell, the Ostomistic Husband.
Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!
This was hard, but the hardest part of the day came next.
Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.
The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in.
That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me.
I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.
The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward".
I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me.
Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat.
So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.
What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too.
Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.
So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else.
Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.
I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.
Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.
Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.
The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.
How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.
If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.
I know there isn’t much support for the men and the carers but lets be in that change tonight.
It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.
Please don’t forget you’re not alone, I am you, I see you, I feel you.
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.
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.
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!!!
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!
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.
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, 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
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.
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.
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.
Saturday, March 04 2017
A year ago I was in hospital in Sydney recovering from major surgery, when some 6 weeks later I was being discharged and ready to head home. It was a 8 hour trip home and my shoes went missing, so I only had my black slippers and I had hoped we weren't stopping anywhere.
Turns out we stopped at not one but two RSL clubs for lunch, the first was full so we drove until we got to Karuah RSL club... so it was embarrassing! My uncle that day drove 16 hours to come and get me and bring me home, what a legend!
As I was preparing to be discharged I got the phone call to say that my little nephew had been born. His poor mum had such a long labour with him and I was relieved when the news came that both mum and bub were safe and healthy. I arranged to stop in on the way home to see my nephew and meet him for the very first time.
I was the first of his many aunts and uncles to meet him and I got a cuddle with him. He was absolutley precious. I felt a special bond with him that day that I could have sworn he smiled at me.
Over the course of the past year, I got to have many more cuddles with him. Each time he smiled at me and each time my heart felt like it was breaking, as I just didn't know how many more hugs I would get or if I would get to see any of his milestones. I cherished every minute I did have with him.
So when his first birthday was approaching, I was nagging his parents back in December with "have you thought of a theme yet", I was met with "His birthday is still 3 months away yet, we have plenty of time".
But I didn't know if I did.
I worried about missing his birthday or if I suddenly got too ill and was unable to make the day or if I would even be alive for his birthday... it is all very unsure at times.
When you are living with terminal illness, everyday you do wake up is a surprise, so I have been so determined to make sure I am prepared and not leaving anything unfinished.... so for me I needed to feel safe in that the invites were designed and printed and that I had contributed to the day.
So January came around and I was asked to design the invitations and that it was a construction theme. Well, boy did I have fun! I wanted it to be fun yet sophisticated but not too cheesy. I wanted to add a photo of him smiling, his smile and laugh is infectious and it just makes you feel so happy.
I also designed some other wares for the party (various signs and what not).
Being involved in the planning of the birthday and contributing meant a huge deal to me. It is my fear that I will die and be forgotten or that Leo would grow up and not remember me. I cry tears of despair and frustration often, about the fact that I would miss so much of seeing him grow up. It's not just him but also my siblings that I am upset about missing out on things, it is missing out on everything and missing major milestones like weddings, graduations or first child....
So I had hoped that looking back on the day Leo could be told "Your Aunt Talya designed your invitations" and that he would remember from photos that I was a part of that day.
Don't get me wrong, I'm not setting out to make his first birthday all about me, but just sharing how I feel facing terminal illness and participating in milestones knowing the ones I will miss. Maybe documenting how I feel might help someone else who is facing a similar situation to know they aren't alone in their feelings.
On the day:
We arrived around 10am, I was a little late as my stoma that day decided it was going to misbehave and leak.
I was really impressed with how authentic the setting out of the birthday looked - true to a construction themed birthday.
There were construction signs and barriers, there was a wheelbarrow for the gifts with a sign I made that said "dump your gifts here", there was a table with a sign alerting people to a hard hat for people to sign as a keepsake momento of his first birthday, there was a lovingly made (bu his mum) construction cake which he devoured and loved, and he was even wearing a kids sized fluro work shirt too!
One of my memories of the day was when Leo stood and danced and I saw for the first time him taking steps. I won't forget how much fun he had with the cake, he even was lucky enough to have 2 cakes (one was a cake smash, a family tradition) and there was cake everywhere.
I struggled for months thinking of a gift for his first birthday, knowing full well that he would get a lot of toys, I felt it needed to be something that was unique and precious.
I decided on getting him a star, it is in his constellation (Pices) and it is meant to be able to be seen from his house. I named the star "Sempiterno Leo" which translates to "Leo Everlasting" in Latin. I wanted his gift to be something he could always feel a connection with me when he saw the star, especially as I love star gazing and astronomy.
Besides, how many 1 year olds can say they have their own star!
I am trying my best this year to really live and make the most out of each day I am given as I just don't know if it'll be my last.
Leo, thank you for the wonderful year of smiles and memories. I am so proud to be your Aunt and I know that you have a whole tribe of people here to support you and protect you through life. No matter what throughout your life always know how much you are loved, how important you are to so many people and that you are never alone. Know I love you a lot and will always be looking out for you.
To his parents Max and Tahli, Thank you for really letting me be involved in his life and for helping with his birthday. It truly meant so much to me and helped with the guilt I was feeling for missing out on future milestones in his life. You have raised an incredibly bubbly and gorgeous son and I am proud of how great of parents you are to him. He is the most happiest baby I have ever seen and I am so happy he came into our lives. Never doubt yourselves, you are doing great.
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, 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.
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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 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.
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?
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.
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!
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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.
Monday, August 22 2016
NB: This post is purely satirical... proceed to read with sarcasm
Recently, I was called Gross.... I was asked "how can you live like that?"
Well, I can and I do, and it is pretty simple. I wake up, I live my life and do stuff through the day and then I sleep... and repeat! See, easy!
You see, my daily routine is somewhat similar to a 'normal bodied routine'... I say somewhat as it is slightly different as it involves me essentially shitting myself 24/7 (oh the horror) but I can point out many similarities to our daily routines...
A typical day of mine goes like this:
7-8am: I wake up in the morning, and one of the first things I do is go to the toilet. Nothing like that first pee in the morning, except I also have to empty my bag. Which is usually mostly air, as most people fart all night. I fart too, just you don't smell or hear mine as it is trapped in a stoma bag.
8.15: I am sure this is where you take your coffee, the one thing that you probably need to get you through the day? I consume something too, my medication (thyroxine, endone and folic acid), I need these to survive and can't live without.
8.20-8.30: Just as my husband is getting ready to leave for work I call him in for a quickie.... he quickly jabs me and he puts on his shoes and then is off on his merry way. Then he can rest easy all day knowing that he helped to keep me alive that day with my blood thinning injection.
9-11.59am: The elusive siesta... some might call it sleeping in, some might call it taking a nap. You probably prefer an afternoon nap, but I have mine in the morning so by lunch time I am wide awake.
12-1pm: I have lunch.. this may vary day to day from leftovers the night before to eating dry crackers. If I am feeling adventurous I might even go out for lunch.
1-5pm: I would call this my 'work time'. I only have a 4 hour work day and mostly my work involves writing a blog post, designing fun little pictures.. who am I kidding, I am on facebook and shopping.
5.30pm: My husband comes home and cooks dinner. Dinner is usually something fancy like bangers and mash. In our household we aren't atypical to the stereotypes of the roles of a 1950's housewife; my husband does the cooking, the cleaning and the bringing home of the bacon.
6pm: We have dinner, talk about our days (he acts like I actually did more than just sit on fb all day) and then we just watch netflix and chill
7pm: We have our showers, everyone needs to shower. I just happen to need to do a bag change afterwards.. No biggie. We all need to change our underwear everyday (and my stoma bag is the underwear of my stoma)
7.30pm: Husband goes to the study and does computer related stuff (as he hasn't just spent all day around computers) and I go to my office (the dining table) and belt out songs. This goes on until bedtime.
8PM: Husband comes to give me another quick prick for the day, ensuring that he has kept me alive for the night.
10pm: We head to bed and read. Well, he tries to read; I just try to have a chin wag and nag at him about what he didn't do or needs to do the next day.
Annnnnnnd then I go to sleep.... and get ready to repeat it all the next day!
So that is my typical day, but also throw in having to do a bag change whenever I just decide to shit myself (you know because I have control over that and all).
So I am sure there are many similarities to our day... we all eat, sleep and shit. I just do it a little differently to you, but doesn't make me gross. Who wants to be normal when you can just be unique?
Oh, and having a stoma isn't the worst thing in the world.... some people have a stoma as it was either that or death.
It can be rather convenient too!
Imagine you're standing in the long queue at Big W to do the no deposit toy laby, and all of a sudden you need to do a poo! Oh what are your options? Either leave your trolley unattended in queue while you run off and pray that no one steals your loot or your spot in the line, or you just stay and wait and have an accident? Well, for me I can just do a number 2 at any time of the day and it conveniently collects into a pouch (that doesn't smell I might add) and then as it is full I empty into the toilet. No more missing out on sales for me!
But tell me, aside from now pooing differently has your life changed too much with a stoma?
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.
Sunday, March 13 2016
I first became a member of the ostomate world back in May 2013, when I had all of my large bowel and most of my rectum removed in a procedure to save my life from the perils of bowel cancer.
It wasn't until July 2015, that I experienced my first really bad bag leak during the middle of the night resulting in soiling not only the doona and sheets, but the mattress protector too.
Worst of all, I wasn't even at home. I was staying in a hotel for a few days in Melbourne.
I had to call the front desk at 3am in tears asking for fresh linens, when they replied they don't have any until room service come in later that morning and that it will be best to change rooms. I was absolutley humilated and mortfied but the guy reassured me that it was okay and it wasn't the worst he has seen. (Got me thinking about how dirty some people can be!)
So when I continued that short holiday (was actually down there for a big bloggers meeting, which was exciting) and then when I got home I made the decision to sleep with towels on my bed and wrapped around my belly, that if my bag did leak it would be somewhat protected and not cause a mess.
Afterall, my mattress and bed cost me $6k and it is white leather, so I am rather protective of my bed... initially I was too scared to sleep in it with the leaky stoma... and it isn't just at home I am scared of a leak, I am hesitant to stay at other people's houses for that reason.
I know that you're thinking "just get a mattress protector", well I have one but I worry it won't give me a lot of protection if it is a heavy leak (which most are).
And it got me thinking about what disposable and cheap products could I use to help give me peace of mind when sleeping.. and I came up with one great one (and will also share what one reader's suggestions were too).
So if you have a unpredictable and leaking stoma like me, here are some affordable ways to protect your sheets.
Cheap, thick and disposable table cloths
Update: What I use now and how I protect my linens
Since writing this post a year ago almost (it is now May 2017), I have been trying out new methods and ideas to help protect my linens and mattress from my leaking stoma in a way that was easy to manage and was being savvy too.
Here is a look at how I place it on my bed. I make my bed/sheets as normal, I put the kylie down then a disposable bluey as an added measure. I know the Kylie is meant to go under the sheets and tucked under the mattress, but given how heavy my mattress is it is not something I can manage/change on my own.... so this is what works for me and for a year now I haven't looked back. I also take a kylie with me when I go and stay at family or friends places too.
Have you found something that helped you during leaking bags of a night when you were asleep? Comment below to share or join in the conversation over on the facebook page.
Saturday, February 20 2016
For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.
I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having a new stoma created.
According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."
These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.
I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.
The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.
Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.
But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.
So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.
The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!
In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!
It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.
As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'...
I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.
It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.
If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.
I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.
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
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!
Saturday, September 26 2015
NB: This post contains raw emotions
I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.
You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.
It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.
My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.
So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.
It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.
So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.
My oncologist presented three options to me, these were:
By this point it was a Thursday and I was told that I had until Monday to make my decision.
After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.
I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!
I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!
Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.
While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.
My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.
... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?
...CLICK.... ......CLICK....... ......CLICK......
Maybe it only works if you're wearing glittery red heels?
P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..
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.
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).
Sunday, August 23 2015
One thing that annoys me the most about having a stoma, is needing to carry around my stoma kit everywhere I go (when leaving the house, you know... to prepare for bag leaks as there is nothing more unpleasant than walking around with poo leaking everywhere... trust me) and to be honest I don't really have the room in my handbag to carry it around what with all the bricks that I must be hiding in there, because that thing weighs a ton!
So last week I went away to the Gold Coast to the ProBlogger conference and had one of those lightbulb moments where I don't know why I never thought of this before... and it was converting a toiletry bag (that is rather small) that I got for free when travelling on the Indian Pacific train into a stoma supply kit that was equipped enough to handle at least 3 bag changes....
Surprisingly, it fitted everything I needed from my kit including: 3x Stoma bags (really can't forget those), scissors, elastic tape (or banana stickies as I call them), 3x mouldable rings, garbage bags (scented), my scentsy room spray (a god sent trust me), stoma adhesive powder as well as the barrier/adhesive remover wipes!
The best thing about this is that it is compact and more discreet, and is the perfect size for my handbag. It also means that it is perfect for on the go whether at school, work or shopping and if you do have to do a bag change just remember to replenish the supplies used and it is ready for the next day out.
I feel less embarrased now as there isn't this big, black and bulky toiletry bag sticking out of my handbag! See the comparison below!
Honestly wishing I had thought of this years ago! And if you had and I am behind the 8-ball please don't judge me... I realise life simplifying tips and resources eventually (and then I share them with you all).
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.
Saturday, June 13 2015
NB: This is a sponsored post
Lately, I have been thinking so much about how differently life as an adult actually is when compared to what I thought it would be like as a teenager. Oh how naive was my younger self.
There are things I never thought were important or necessary until the time came and I realised it was too late.
Here are my 5 things I believe that every adult should have in place:
#1 Life Insurance Policy
I didn't realise that having a life insurance policy can actually be of help if you get sick and need time off work, or if you suffer an illness or injury and become disabled or unable to work again, the life insurance policy can help you out.
What I wished was that someone had of said to me when I turned 18 to get insurance, as it wasn't until I got sick that I went to take out a policy and told that I am now 'unsurable'. There were so many times that I wished I had that extra financial assistance when I was too sick to work.
I did however make sure that once I was married that my husband has the necessary cover in the event that he becomes sick. We met with our financial planner at our bank and set up the policy to be paid out of his super fund. It is convenient for us paying it this way, as I am often in hospital sick it is one less bill to remember to pay. We were able to nominate the total insured amount we wanted as well.
#2 A will
A will also has instructions over who is responsible for your digital assets such as a blog, facebook etc and what you're wanting done with these digital assets when you die. My husband understands my clear instructions of what I want to be done with my blog etc when I die, he knows that I want to keep my blog open as a resource for all the young people in the future who have FAP or will be needing a stoma and are looking for support when they feel alone.
My husband and I were struggling to find a time that suited both of us to visit a lawyer, so we were so happy when we came across Nest Legal an online legal firm, not only did it mean that we could organise our wills from the comfort of our own home, but also meant working around a schedule that suited us and not around when both my husband and I could make it. It was a very convenient solution, and so lovely to deal with.
#3 Enduring Power of Attorney
An enduring power of attorney is a document that is as important as your will, and is a document that nominates someone to act on your behalf for financial, legal and health matters if you become incapacitated or unable to make decisions for yourself.
It is important that you discuss with your loved ones whom you wish to appoint and what roles you expect of them. It is important to choose someone there won't be conflicts of interest with or someone who can remain impartial to decisions and can act with your best interests in mind.
#4 A Regular GP
As my medical history was becoming more and more indepth with each visit, I made the decision to 'shop around' for the right GP and I happened to have found him 4 years ago and never looked back. It is really helpful now having 1 GP who receives all the correspondence from doctors, scans and blood tests rather than having a few doctors and not remembering which GP you saw for what issue.
Trust me, having a regular GP will make life easier!
#5 Health insurance or Ambulance cover
You never know when you or your family might need an ambulance and there is nothing more stressful when you're dealing with an emergency than worrying about how you'll be paying for it, instead focusing your energy where it is needed.
If it is health Insurance cover you need, speak to the guys over at Health Insurance Comparison to find out what policies there are to match your needs or lifestyle.
I have no idea why I was in such a hurry to become an Adult, some days being a kid sounds so much easier.
So while these might be my list of 5 things I believe every adult should have in place, I know that you might have other suggestions. Feel free to leave your suggestions in the comments below, it might be of value to another reader who hadn't thought of it.
DISCLAIMER: While this post was written by myself about my experiences and the 5 things I believe every adult should have in place, all views expressed in this article are mine. This post was written for Health Insurance Comparison.
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 email@example.com.
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.
Wednesday, October 29 2014
Sometimes it can be frustrating when you spring a leak (a stoma bag leak that is, not a spring onion) or when you're trying to do a bag change and your bags just won't stick!
I have 5 handy and quick tips to getting your bags to stick better and help you to prevent a leak!
1) The very first thing I do when I am about to do a bag change is to grab one of my bags (don't cut it yet if it isn't a pre-cut), fold it in half and place under your boob. No joke- this works wonders! Because the glue on the stoma bags is more stickier the warmer it gets this is a great way to warm your bag up which means make your bag more stickier.... I KNEW having huge boobs would come in handy one day hehe
If you're a guy I don't think this step ^^ will apply to you (sorry)
2) Grab a hairdryer and put the settings on a high heat and sit there for about 5 minutes heating the bag up. Make sure that you are heating up the wafer part that will stick around your stoma. You don't need a fancy hair dryer, I just bought a cheap one from a department store and it works a treat!
3) Using your adhesive remover wipes (I love my Coloplast ones) ensure that all of excess adhesive residue from your last bag change is removed. I then using a wet washer will give the skin and area a bit of a wash (trying to not use a lot of soap as this can make bags not stick). Also make sure that the area is completely dry!
If you use Stoma adhesive powder, it is important to make sure that you wipe off any excess powder where your bag usually sticks, as this can also stop the bag from sticking. I use my skin barrier prep towlettes (like the adhesive removing ones, also coloplast) to prepare my skin for the bags and to remove any excess powder etc.
4) When I am ready to put the bag on I get both hands and kind of put them around the stoma (one on either side of the wafer plate) and press firmly and hold for a while. This adds extra (natural) heat to the bags and helps to make them a little more stickier.
5) To create some extra reinforcement of the bags I use 'banana wafers' (correctly known as elastic tape) and I use two of these to help secure the bags. One wrapping around the bottom and sides, and the other wrapping around the top and sides.
Those are my 5 quick tips to make your bags more stickier!
If you have some quick tips that you've found to make bags more stickier share them below!
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.
Wednesday, October 22 2014
Last night something unexpected happened.... Don't worry it wasn't anything bad, it was actually a changing moment for me...
And it all started with two small words that have so much meaning.
Those words were "Thank you!"
I have always felt that it was my mission or 'purpose' in my life to help someone else and make a difference to someone's life.
I would spend a lot of my free time (when I wasn't at school or work) during my High Schooling years volunteering and doing charitable work which then continued on through my time at Uni when I was studying to become Nurse. I felt that maybe this was how I was going to help make a difference.
When I started Feeling Ostomistic last year it wasn't for the attention, sympathy or pity through sharing my journey and the struggles faced, but was for a way that I can help support, encourage and empower someone who needed it most.
I knew how hard it was for me (who was 22 when I had my surgery to remove my entire large bowel) to find information and support that was aimed at a younger person as everything I found was more suited to the older population or geriatric care respectively.
So I realised that if I was struggling that there was bound to be others out there struggling as well.
I knew I wanted to help create social change and awareness that bowel cancer and issues affect younger people not just older people, but more wanting to advocate and make people aware of the importance of bowel cancer screening at any age (if you are showing signs that there is something different about your bowel habits).
But importantly, I wanted to help encourange people to not be embarrased about talking with their doctors about their bowel issues- which in our society is a big issue as people are just too afraid to find out or too embarrased to talk about it.
So last night I had a friend message me telling me how grateful she was of my blog and for making her feel encouraged and supported to go to her doctor to discuss problems she has been having and putting off.
She also wanted to make sure that I knew that it is important that I continue to share my voice and awareness- that my voice is being heard and change is starting to happen.
I didn't set out to do this blog for the grattification or praise, but it really was a moment of realisation for me that I am helping people and that my message is being heard and in return helping to save a life one blog post at a time!
If you have felt supported or encouraged from reading and following Feeling Ostomistic please let me know by commenting below (you can change your name to protect your privacy if you wish).