Saturday, October 27 2018
This is not a paid advert or collaboration, just me finding a great deal to pass on.
I have tried all year since reading the Barefoot Investor to find savings where I could through reviewing our bills and that with other providers and even had power panels installed through an interest free payment offer.
One of the bills that has been bugging me, is my pet insurance for Dusty, I know many think it is a waste of money to insure your pet but it is something that could help save big costs. With Dusty's breed of cat, we were recommended by a vet nurse to get insurance and go through Pet Plan.
We signed up a policy when he came to live with us going on 2 years ago to this date and at the time the plan was great and affordable at $36 roughtly a month. But once the 12 months were up the policy jumped up, and then up again and now is sitting around the $63 a month, almost doubling and I am no longer feeling confident with our policy. We haven't needed to use it yet but it was a large cost that had doubled for almost no reason.
So I was on Kogan the other night looking for a gift for Russ for Xmas, when I saw an advert for pet insurance and was curious. I was intrigued by the first month free, but also that the plans looked similar to what I was paying currently with Petplan but at a much lower rate.
I signed up and emailed to cancel my petplan and pray that Dusty doesn't get sick and needs a vet, but at least if he does we have cover.
Best of all, it is now only $39 roughly a month instead of $63 and to our budget and pocket that is a big saving!
I am interested in learning more about their mobile and internet plans, 2 years until our contracts are up but never too early to research options.
That is our power reduced, our pet insurance, our car insurance and our home and contents insurances this year, I think I have done well to make a little savings in each policy.
I always feel productive when I have done some adulting, Russ is even happier if it comes in under budget. Or when Xmas comes early...
Oh and as for Russell's Xmas present (the whole reason I was on Kogan to begin with), I ended up finding it on a different site for $30 cheaper, it arrived on his day off and he opened it and started setting up before I had realised, so now he has his Xmas gift and he loved it. It was a pokemon go lego like (mega construx) and was a big gyuarados (the evolved form of Magicarp) so Russ has been happy. Found it on ToyDeals.com.au for $30 plus post, but still was cheaper than most sites, quick to arrive too (couple of days too). also not a paid mention, just a damn good find!
Crazy that Christmas is so close, it also means that the Share the dignity #itsinthebag promotion is on soon too, better get started on that myself. I am not anywhere near organised this year!
Disclaimer: I was not paid or asked to write about this, I found and paid for this plan myself and thought it was a great buy to pass on to you, always read the PDS to make sure the product is right for you.
Sunday, June 17 2018
Calling all young females (u/55) living on the Mid North Coast or Coffs Coast with a stoma, check out this exciting and new FREE event happening in August!
My stoma nurse has been excitedly organising this event and I was honoured to have been asked to design the flyer, but I was even more honoured to be asked to speak on the night as one of the speakers.
☞ The event is FREE and is open to all women with a stoma and under 55 from the area, if you're willing to travel you can come along, just make sure you RSVP.
☞ If you have any dietry requirements aside from the stoma, let the stoma nurses know and call 0266567804, that way everyone is catered to.
☞ The night is going to be a fun night with the chance to get to meet other young ostomates under 55's and the hopes of connecting each other to form friendships as ostomy life can be rather lonely for some.
☞ There will be a fun activity for all to join in and will also have reps from different ostomy companies there with samples or to speak more. Guest speakers will include Allied health professionals as well as myself.
☞ This event wouldn't be at all possible without the fundraising done by the Coffs Coast Crafty Crew (scrapbookers) in April 2016, as well as the hard work from the organising team of stoma nurses.
I am really looking forward to the night, and looking forward to meeting others from the area. Whether you're from Port, Grafton or in between this event is open to anyone who would like to come, has a stoma and is under 55 and a female.
Did I mention it is FREE and catered?
Can't wait and I will see you there!
Friday, June 15 2018
Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.
I felt rather relieved to have finally had the appointment, moreso for what came next.....
I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.
But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.
So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.
If after a fortnight I am happy with them I accept them and they are mine.
It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.
It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.
So I almost cried when I learned that I could be hearing in a matter of a fortnight.
I am hopeful and excited, I have needed this for so long.
I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.
So I am okay, I am just grateful for all the new possibilities coming my way.
I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.
So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.
Saturday, April 21 2018
Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.
I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".
Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....
So surely a duress warning is warranted after all, due to the amount of population exposed?
When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life.
Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!
Anticipatory Grief: The grief you experience without realising there's a name for it!
I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.
But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.
Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.
It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.
But it really made me look long and hard at my own life.
I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.
But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
There have been other moments I experienced Anticipatory Grief without realising it:
I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.
★But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.
I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.
I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again.
Noticing anticipatory grief in those around me:
Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.
Ways or some examples have been:
Time for change, let's talk about Anticipatory Grief to Normalise it:
For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.
I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.
Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.
But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.
Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.
Sunday, February 25 2018
Did you know: there is an International Day for just about everything!
Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.
Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!
Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.
We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.
Russ and Dusty have their own special bond and routines, just as I have with Dusty.
I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better!
Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long!
But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.
Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.
Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.
I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!
Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.
Dusty is famous:
So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!
I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.
He has THE BEST facial expressions!
You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook.
I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.
The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!
Monday, February 12 2018
Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.
I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week.
Let me start by sharing (an ironic) quote from the episode:
The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.
Just an idea?
Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.
Here are what other ostomates and advocates said about the episode too:
No You Cantcer @NoYouCantcer
Here are some ostomates who inspire me and others:
But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.
I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.
While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.
I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!
✰Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
✰Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
✰Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
✰Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:
"Anything that has the power to save a life can be nothing but beautiful!"
For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog
✰Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
✰Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.
This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.
My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.
As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.
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
Wednesday, February 07 2018
CONTENT WARNING: DISCUSSES DEATH READ AT OWN RISK
What a massive couple of weeks it has been, if you were following along on social media you may have seen my posts from hospital updating on what was going on.
Australia Day, is often a day spent with family and friends remembering or celebrating what it is to be an Australian, I know the day has conflicted meanings and celebrations for everyone, but Jan 26th 2018 will be a day that I remember just how close I came to those pearly gates and how bloody grateful I am to live to see another day.
So this is what had unfolded:
On Tuesday Jan 23rd, I was brushing my teeth around 4pm when I had a really sudden sharp pain around my right kidney area and shot down my leg and my leg felt like it were about to snap. I hopped, literally, to bed and got comfortable and had a nap. I woke around 10pm and struggled to get up out of bed and then also get to the toilet.
The next day the pain in my right leg was a lot worse, I couldn't weight-bear and relied on Russ to help me move from bed to toilet back to bed. I was crying in agony.
Thursday morning I woke and trying to get to the toilet I was screaming in pain. Russ was heading to work and I called Palliative care who told me to call an ambulance. So Russ left for work and I went in the ambo to the hospital. I had fentanyl up the nose a couple of times and barely took the edge off, no amount of morphine was helping either. Russ went to work but by 10am he was at the hospital as he was upset and wanted to be with me. It was a comfort him being there as I was in agony and I was so scared. The pain was horrendous.
I was admitted to hospital.
The next bit is where things got dicey....
So overnight my heart rate went sky high, talking 144bpm (normal for me is 90-100). My o2 dropped too.
They monitored me but by next morning things weren't any better.
I remember friends messaging me around 10am and I replied back, I thought I made sense but it was all drivvle and nonsense but it looked fine to me, so I didn't think anything of it.
That was all I recall, I don't recall much after that point.
Apparantly, from the pieces I managed to compile in the days to follow, was that I was passing in and out of consciousness. I went into a deep sleep and they struggled to wake me.
I kept coming too during the "resus" which may have been around 3pm and saw bunch of folk standing around my bed, some were pushing IV drips in, someone pressed the big emergency button, remember my bed being wheeled to another room where doctors were talking to me. I was upset and frustrated as no one was telling me what was happening, turns out they were but I was passing out by the time I asked my question and them telling me what was happening.
I wasn't sure where I was and my speech was slurred.
They rushed me up to CT and did a full body scan, thinking I was having a stroke or heart attack. I am on clexane injections due to previous blood clots in my lungs, but also because the tumour in my abdomen has blocked off the major arterial blood supply to my small bowel and stomach and they were worried that maybe there were a clot in my small bowel (one of the forecasted ways I could die)...
So I was upset and asked them to call Russ, he arrived sometime after they called him (he was on his way to me anyway) and I calmed down a bit when I recognised one of the voices of one of my doctors off my palliative care team, it was just scary being unconscious and not being able to see who or what was being done to you and remembering I didn't quite know what was happening.
I did also keep telling them "I'm not ready to die today" and "ignore my DNR". I was adamant that NOW was not my time and I was crying saying "but I am not ready" and "I need to write my goodbye letters".
I was just so worried that I was dying alone and it was my fear.
So fast forward to post event, I was so hazy and tired. My body hurt from the siezures and all the medications, I was having trouble reading (still am) but also what I was speaking wasn't what my mind thought I was trying to say, even typing for a few days after were a struggle.
I am still so tired and exhausted, I am trying to rest, but it really has been such a difficult couple of weeks.
They don't know what happened, they think it were an infection, my leg is still giving me grief but I was just so terrified.
Had I stayed home and tried to "tough it out" at home like I usually do, things would be very different and I could have very well died in my sleep during the day alone.... which is one of my fears, is dying alone. Russ has a fear of coming home from work and finding me, he gets worried when he calls me as he leaves work (even before all this happened) that he never knows what is awaiting him at home... poor guy! This latest event hasn't helped his fears though.
But it made me realise a few things...
1. I am not ready, I still feel like I have so much left to do, including putting pen to paper and penning those difficult goodbye letters to my loved ones.
2. I have a newfound appreciation for every good moment of the day and just how grateful I am to be alive
and 3. That Russ has even more grey hairs now than he did a fortnight ago, but that I saw just how much me being sick has taken a toll on him.
But jokes aside, I honestly always thought that when it were my time to go that I would know that it was time and that I would feel this sense of calm and readiness, as if I felt accomplished and happy. Now, I worry that maybe there isn't ever really going to be a universal sign or feeling of totality and that maybe you won't know.
It has made me even more determined now to try and get my affairs in order and try and be the best version of me I could be.
So I am home now, pain meds have had a total overhaul, back to weekly palliative care visits and here's hoping there are a few more chapters left of my story.
They pumped me with so much fluid during the resus that my stomach swelled up really badly, so much that I thought it would just split open, so took duiretics to help shift the water and my stomach is resembling it's usual self but still sore. Even around my stoma was swollen from fluid.
It has been a difficult week adjusting to being back home, I am still feeling weak and tired, my brain still feels sluggish and I am just taking my time to rest and actually listening to my body for once. I am not going to push myself anymore and after starting off 2018 on a rough patch I hope theres a few good months ahead.
Thank you to all the love, messages, comments checking in on me, it is a comfort knowing so many care.
You're stuck with me for a little longer still, well I hope anyway!
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, January 08 2018
I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.
Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.
So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).
I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.
#1. Self Care:
I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked!
Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show.
#2. To read more:
So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.
Let's do this!
#3. To say No more:
In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.
#4. Reducing waste:
One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself.
So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.
I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.
So if I can make changes in other areas of my life, it hopefully makes up for it somehow?
#5. See the snow:
I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.
I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.
It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.
If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.
#6. Learn something new:
I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.
#7. Write that damn book:
#8. Write a blog post a week:
#9. Write a journal:
All of these writing cues would be kind of life self care I guess, since it is cathartic and all.
#10. Regularly meet with a counsellor:
I guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.
#12. Go Glamping:
#13. Have a holiday:
#14. Explore the Coast:
We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!
I am just really hoping to see/experience new places this year.
#15. Renew our vows:
I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.
#16. Get back on our feet financially:
We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.
I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.
Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.
#17. See a waterfall:
#18. Try to get my pain under control:
I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.
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I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.
My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!
Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.
To be fair, his list was most of what I do anyway which was:
Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.
I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.
Thank you for reading, feel free to share something you hope to do this year in the comments below:
Thursday, December 14 2017
If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.
NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.
So in this Part 2, I will be sharing tips to help you be more prepared for the weekend
But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.
I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.
I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.
Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.
Part 2: Being prepared and tips to surviving the heatwave
I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.
Tip #1: Never leave kids or pets alone in a car
Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too.
I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.
A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.
What to do if you see a child or pet in the car?
You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.
For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.
Tip #2: Have plenty of water
You should drink two to three litres of water a day even if you don't feel thirsty.
Tip #3: Have electrolyte replacement on hand
Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.
Tip #4: Stay cool
If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.
You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.
A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.
Tip #5: Keep plenty of drinks in the fridge prepared
Tip #6: Have ice packs or blocks in the freezer
Tip #7: Keep blinds drawn
Tip #8: Wear light summery clothing
Tip #9: Be sun smart and sun safe
Tip #10: Reapply sunscreen often
Tip #11: Don't lie in the sun exposed
Tip #12: in case of a blackout
Tip #13: Open the house at night or evening if a cool change is forecast
Tip #14: Pets or wildlife
Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.
Tip #15: Keep your body cool but not freezing
Tip #16: Check in on those at risk
Tip #17: Watermelon
Tip #18: Foods
Tip #19: Wearing a stoma cover
Tip #20: Mashmallows
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I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.
Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.
More Links through my research:
If you have another tip, be sure to let me know in the comments below. To read part 1, click here
Thursday, December 14 2017
NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.
Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.
But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.
So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.
..... 14 days in to December, this is going to be a long hot Summer!
Part 1: Knowing your risk and what to do
I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.
Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.
How does having an ostomy put me at risk during a heatwave?
Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.
With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.
It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.
So what is dehydration and what are the signs to look out for?
NSW health says the symptoms/signs of dehydration to look out for are:
So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
So what are heat cramps and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice:
So what is heat exhaustion and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
So what is heat stroke and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.
Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!
Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.
Monday, November 27 2017
I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!
I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.
I also feel mega proud right now!
I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.
If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.
I am really hoping you love this issue, there are 2 giveaways too.
In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.
So sit back with a cuppa and have a flip through.
I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.
Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.
Anyway, have a wonderful night and I will anxiously await your feedback.
Saturday, November 11 2017
Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.
I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.
I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.
This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.
As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom.
Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.
I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.
So I have a wheelchair and I am not ashamed of it.
My wheelchair has given my life and ability to enjoy and love life back.
But people, even family, recently said that they thought I had a wheelchair because I am lazy.
Yes I am overweight, but that isn't why I need a wheelchair.
I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.
But hey I am just lazy arent I?
I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.
But not all disabilities are visible.
AND a disability isn't just someone using a wheelchair.
If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.
You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.
So before you think you HAVE to say something, remember the acronym THINK:
It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.
In your actions just stop and think.... is this necessary? What will it achieve?
But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?
He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.
Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.
One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes.
Next time you want to shame someone, stop and think first.
If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.
There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.
The world needs more love and they say if we want to create change to start at home first.
Friday, October 27 2017
In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!
Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.
We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.
This isn't the first issue with the bank this year.
They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.
THEN....☟ ☟ ☟ ☟
We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.
THEN...☟ ☟ ☟ ☟
The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October
THEN... ☟ ☟ ☟ ☟
On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."
I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.
I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.
THEN...☟ ☟ ☟ ☟
The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."
The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".
I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.
I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.
THEN... I received this email today☟ ☟ ☟ ☟
To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."
To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".
Uhhhhh, how are you not judging me?
You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.
Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.
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I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.
If I win lotto tomorrow it would be 21 million reasons to not bank with them!
But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.
I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.
I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.
I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.
Saturday, September 16 2017
Is it only me who feels like the last year has been a complete blur? I know this is how it feels for me! I started writing this post back in 2015, then wrote more a year ago but only now have I finished it. I know it is long, I am sorry, but excitedly it was something that took time to write and unfold. I am not writing this as a brag post, merely sharing the process and how we got to building.
12 months ago we got given the keys to our first home... I remember this day so well, as if it were only yesterday. Gosh, that year has gone so fast, crazy!
12 months ago I didn't even think I would be here a year on to celebrate!
We finally were getting our house, a house that we worked hard and sacrificed over years to get, the house that I thought I wouldn't be alive to see. It was a massive goal and dream of mine (well, ours) to have our own home.
I know a lot of people have judged us for "not really doing it hard " when we were able to build a house and loved making up rumours that we were rich, but we weren't and aren't flushed with cash by any means at all. We saved and sacrificed and worked hard over years to get our own home and we had our fair share of setpacks and hardships during those years, but we never gave up hope.
I have copped a lot of flack on my blog and my facebook page about building and buying our house, I have been told I am a fraud, I have been on the end of horrible jealousy and judgement when inviting people into our home.
While I acknowledge that yes I am fortunate to have my own house, I really don't deserve the vitriol and to be made to feel ashamed of having my house or that I could achieve something that I have always dreamed of doing which was to be a first home owner.
I acknowledge that it is very unaffordable to live in places such as Sydney or Melbourne or Brisbane and it is harder for first home buyers to afford their own house. We live in an area of rural NSW where house prices are a fraction compared with those in the bigger cities.
So this is not a brag post in anyway, it is a post that showed our story to how we remained hopeful that one day we would be lucky enough to be home owners. A story of how we eventually got to something we talked about for years. A story that I want to share of our house and how it came to be....
It was cheaper to build a house than buy one, but it doesn't mean we aren't still struggling each week to make ends meet. I still don't have any life insurance and still haven't gotten my super out, we are still drowning in over $15k in credit card debt.
But out decision to have our own house came down to several factors:
How we got here:
We would apply for a homeloan every 6 or so months since early 2010 and usually would be declined and told to come back again in 6 months and try again.
We were fortunate that with Russell's income, we had worked off some of our debts to look more appealing, the little we had saved over the years and the low interest rates meant that the banks were willing to offer us a homeloan, we weren't even expecting a yes that day, I remember we went home and we cried and hugged for hours that FINALLY we could be getting our own place.
It was a dream come true, really!
But for what we needed there wasn't anything in our budget that didn't require a lot of work and rennovations which was money and stress we couldn't afford. Also, because Russ was still on his L plates or his learner's license we were more or less confined to living within walking or riding distance to work, which limited the area we could look at.
We also wanted a house that was:
If we were lucky to find something that ticked most of the boxes it still needed a lot of work done.
I know it sounds like surely a lot of places would easily fit our budget, but with only a budget of $350-390k our options really were limited to:
Deciding to build over buying an established house:
We had mostly given up all hope of having our own home, then the bank manager said these 5 words: "have you thought about building?" and it changed everything. Yes, we had thought about building and No, we didn't think it were possible based on quotes we had years ago the house cost more than our entire budget!
We had always hoped to move out of Coffs at some point and preferably would move to Woolgoolga. We had always felt Woopi felt more like home for us and Coffs was just far too busy, noisy and crowded for our likes. It was close enough to Coffs if we needed doctors or work but far enough away. It is only around 20km north of Coffs Harbour.
When we looked into land, stand alone house costs to build or house and land packages in Woolgoolga (and surrounds) we noticed that the land outside of Woopi in older beachside towns/suburbs was cheaper too approx $200-300k difference in price than in Woopi but only 5km away.
Russ was keen on the move too and I told him he wouldn't move until he had his P's, so he became more committed and took up driving lessons and actually would drive most places to get his confidence up. Excitedly he got his P's first go in June last year (2016), I cried tears of joy and relief and was so proud... been a big year for milestones for us both!
We found this perfect house and land package that fitted our budget perfectly that we drove out to Woolgoolga that next day to enquire. We got to the real estate office and told that the contracts were exchanged earlier that day and that it was now off the market.
I felt a bit bummed out, it was the last available block in the estate, I felt like the hope I had for our future was gone.
But, alas, there was hope again:
On the drive back to home (Coffs) I called into the display home for the builder the earlier package was from and wandered inside. I told the salesman we were interested in the property that was sold earlier that day and if he knew of any other developments coming up that we could secure something early to avoid missing out again.
He replied: "I think I have something for you", feeling hope returning he ushered us to have a seat at his desk. He pulled out the estate plans and circled LOT 14, he said "a block has just become available today after a couple pulled out due to finance falling through, it is double the size of the one you were keen on for a fraction of the price. It is in the first stage release and building can commence in the New Year".
I was so surprised when the builder said the house could be built for $235k! I almost fell off my chair. It included rendering the house and we opted to get airconditioning installed post build as we ran out of money in the budget initially. We had to pay for extras like fencing, tiles on the outside patio, landscaping, turf etc.
It was 16 September 2015, (year to date later we got the keys and moved in) I was due to start chemo in the coming weeks and not knowing how long I had to live, we wanted to do whatever it took to secure this block and start the build, so we could move in the following year and thus ticking off another life goal of ours.
I looked at Russ and asked him if it felt right with him and he was definitely keen, so keen he handed me his credit card. We handed over the deposit they needed which was only $1k - and we just put it on the credit card so we didn't miss out.... and so the process began!
I think the sales person thought I was nuts for opting to build a house while undergoing chemo.
But you know what, I think the build was the one thing that helped me to get through chemo - knowing there was something so exciting to look forward to- it became the best part of my week driving out to check the house progress.
Which brings us to 12 months ago today!
The house was 3 months behind schedule which meant that it was 3 additional months we hadn't quite budgeted for with the additional rent and were struggling. We were paying rent of $375 a week plus the mortgage on a house we weren't even living in, and I was so stressed trying to pay all the bills and afford to eat that we added everything to the credit cards (which we are now drowning in debt to repay and get on our feet).
But the day for final inspection and key handover was finally here, after being pushed back weeks and even days that same week, Friday September 16th had arrived!
We had to be out at the house by 7am sharp ready to do the handover, Russ was having to leave for work by 8am and our furniture pieces (spare bed, lounge and outdoor setting) were due to be delivered at 8am too, the fridge and dishwasher would arrive at some point that morning too. It was absolutley pouring, so much rain and very wet and muddy.
When Russ left, it was just me at the house all day without a car as he took the car to work. I remember just walking around the house all day just feeling so surreal that this was actually ours. Everything looked so new and shiny and was too perfect to live in, I was scared to make a mess. That new house smell too, it felt like I were on holidays.
The builder gifted us a picnic hamper and wine, which came in handy as we hadn't thought as far ahead about plates/cups/cutlery! Was a very thoughtful and unexpected gift.
Wasn't long and I scratched the wall and the place felt like home.
Our first night in our own home:
That night we ate pizza out the back on the patio on the new outdoor setting (was our only table setting for a fortnight) using the picnic hamper the builder left as a gift for us, and we toasted to our first night in our house drinking homebrand pineapple fizzy!
We slept on the spare bed that had arrived earlier that day and I never stepped foot in the old house again.
Never have I ever felt more at home before, but here I feel so happy and we truly love it here. It is so quiet compared to where we lived which was on the highway in Coffs Harbour at one of the busiest traffic intersections.
I feel healthier in this house too, which sounds strange to say as I am dying from cancer. But, the old house I think was making me sicker than I was already as the house leaked/flooded everytime it rained, normally in winter I struggled to breathe and my asthma is horrid - this winter I wasn't in hospital once! It is normally my second home in winter as I can't breathe. Could be there isn't the added pollutants of the traffic too here.
We just love it here!
It is only 17 minutes for Russ to drive to work of a morning and after he got used to the routine of driving of a morning instead of just walking or riding his bike he was fine. He is a lot happier here too.
Woolgoolga was where Russ called home for most of his life, he said it feels great being back.
The town is so welcoming and kind, everyone is always saying hi and smiling, kids you hear laughing and playing in their backyards, they too seem happy which makes you happy too knowing others are happy.
But the 5 best things about finally having our own home is:
It was a long road to get here, so many times we almost gave up along the way thinking that it would never happen. Never give up on a dream.
I had some people when we said we were going to build say to me "but you're dying, what is the point really?". How I saw it, was that no matter what my prognosis is, Russ still needs somewhere to live.... but why should I give up hope on seeing a dream I have always hoped to come true just because I won't have a long life. I know it is hard at times to understand why, but everyday that I am alive I want to live a life I love and that I am proud of... just because I am dying doesn't mean I stop wanting to live or to achieve my heart's desires... dying just made me want to move a lot of things along earlier than expected.
Please keep an eye out for more posts I am writing, I am catching up on over a years worth of posts. But if you want to ask advice and you haven't been able to find it on my blog feel free to contact me or check out my facebook page too as I often blog on there too.
P.s if you read this far, thank you! Russ and I are working on some more posts about the build and advice for others just lessons we learned along the way, so keep an eye out!
Sunday, August 13 2017
It is hard to believe that it is almost 12 months since we have moved into our new house!
I have been so busy trying to live and love life, plus enjoying the good days, that we haven't yet completed unpacking our house and we have so much left to do. This has had me feeling rather disappointed in myself as I was really hoping to have had the house set up and finished by now. So while we have nothing planned for the next few months, I really want to focus on finishing the unpacking and working on styling the house.
Having a beautifully styled house that I am proud of is one of the things I wanted to tick off my bucket list!
The first room I want to finish is our master suite (bedroom and ensuite). I spend so much time in my bed, bedroom and ensuite, that for me it is my most used/lived in space. I really wanted the room to make me feel happy, safe, comfortable, relaxed and proud; but more importantly, I want others visiting me to feel the same sense of comfort.
I had hoped by now to be able to have afforded a full room makeover, or to be on our feet financially for that matter. We have been adding pieces to the room as our budget has allowed us over the last year, but we still have a way to go. I love a good bargain and hunting for things
Russ thought it would be a good idea to perhaps write a blog post as a wishlist of what we want to achieve so that in a way we can hold ourselves accountable for ticking off this goal of finishing the house, and especially our room.
So, this is the accountability post for completing my master bedroom and my wish list for the tropical styled things I want in it.
I promise to do an 'after' or finished/completed type post, otherwise I will share the gradual progress on social media until then!
With spending so much of my time in bed, or unable to get out to shop in person, a lot of that time is spent just browsing sites to get a clearer picture of styling/product ideas. It is always nice when companies have a good online store with stock updates that are timely and reliable. If they have social media too you can see how other customers are using their products to style and get ideas from actual users of the products. I know I browse through Fantastic Furniture and Pillow Talk online all the time (as they are two stores close to where I live), always keeping an eye out for sales or new stock. I have a few other sites that I regularly do the rounds to check for the latest products, styling ideas or latest sales (I wish the reject shop had an online store), it really does help to pass the time when you are otherwise stuck in bed.
Another way to pass the time and find inspiration is Pinterest! I only hope I can create and style a Pinterest or Instagram worthy house on a budget!
I am hoping the quilt isn't the reason the styling of the room falls apart, so I am hoping I can make it work to pull it off! I really love this quilt especially as on the reverse side it has this nice aqua colour + it matches with my purple (fave colour) sheets, so not sure if I want to part with it. However, if necessary to better the room then I might, but it makes me feel so happy and that is my priority!
Were I to change quilt covers if I felt it (the above quilt) really wasn't a fit, I have found some others from Pillow Talk and Spotlight that I have pictured below. It is so hard to choose what one I like the most, so these are my top 10! Pics to the left are from Pillow talk and pics to the right are from spotlight respectively.
We purchased it back in 2012 from Beds R'Us and it was looking amazing until Dusty recently decided it was in fact his clawing post (I cried, it was heartbreaking to see/hear). I had thought about upgrading our bed but my heart is too set on it. It is a king size; it is leather which is easy to clean; it is white which means ANY quilt cover looks great and that it can be suited to any theme; it is the right height for me and doesn't hurt to get in and out of like our timber bed before; and besides, it looks so elegant too!
I know Russ has thought about upgrading our king bed maybe after I die, he feels it is too pretty for a guy and too hard to keep clean because it is white, not that he wants to remove my existence from our home- just he might feel like a change, who knows? If he/we did upgrade this is one that he has his heart set on.
Something to note is it is made from Acacia wood sourced from sustainably grown plantations (which is a tick from us as we try to be environmentally conscious), but the beauty of this timber is that it would beautifully match a tropical themed room! It is a bargain at $799 with 6 years warranty too (I think Russ is all for extending our warranties from his job as a salesman), as opposed to the $3500 we paid for our current bed, so if we/he upgraded it is a nice and affordable option indeed. Felt pretty solid too.
I have been wanting the TV set up in our room so that I could watch Netflix, a movie or catch up on missed TV shows. I'm not well enough to sit out of bed for long most days, so having the TV in the room would help. I am struggling typing or holding my phone and iPad the last few months, the nerve damage from chemo and the tumours are making it painful to touch things. I try to use my iPad but it is frustrating sometimes at how small the screen is or at the lack of sound (remembering I am deaf in one ear) so it makes sense to set up the TV where I can see it comfortably.
So Russ one afternoon last week told me to stay in the lounge room as he had a surprise planned... surprise (see picture below)! He had set the TV up on top of some cheap/flimsy bookshelf from the shed. Doofus! I loved the sentiment, but I am so worried as Dusty is a climber who likes jumping on shelves. But it has been great the past week enjoying TV from the comforts of my own bed!
We have been looking into options to put the TV on. It needs to be at a height of 900mm or higher due to laying in bed and not having a clear view if any lower.
So we have found two options: We thought that a chest of drawers would give the best height plus allow for additional storage. Russ wants the tall 4 drawer as it is 150mm taller than our current set up, but aesthetically I think the 6 draw would look and fit the space better - though it is 100mm less (but TV is awkwardly watchable). The two we like are in the Toronto range from Fantastic Furniture and there is only a $100 price difference. I can't decide, but once we do we will enquire into layby options to pay it off over a set period which makes it more affordable. I know $599 or $699 respectively might not seem like a lot - but it is for us when there isn't a lot in the bank.
We needed to get a cupboard for the hallway (can never have enough storage) and Super Amart had a 'buy one get 2nd item half price', so we only paid $225 for the armchair (it all went on our G.E. interest free card)! It is the 'James' and is the same as the lounges in the living room and it is wide enough so I can sit in it comfortably - if I want to sit and read, it has big arms and is really spacious. Russ often sits there reading a book while I am sleeping, especially on my bad days, so that he can watch over me and feel he is close by. Dusty also has claimed the chair as his, so just like every other part of the house this was business-as- usual.
The chair for us was a must have for the future too. There will come a point when I am declining in my health and I want people to visit me and be comfortable. Russ tells me that it is 'typical Talya behaviour - always thinking of others needs', but all I want is for people to want to visit. It is a fear that I will be dying and be alone and I don't want to die not knowing that I am loved. So this chair is important and it gets used often.
When we were in Fantastic Furniture recently I stumbled across this flamingo canvas artwork (below) that has all the colours of my quilt and is keeping in with the contemporary tropical theme, Russ really liked it too, so we are hoping to get it when we can afford it. It wasn't much, around $49 from memory.
I also enlisted the help of Foote and Flame to cut out some bamboo shapes of different tropical leaves so that I can hang these around my room and make an art piece from it. I also found some cheap tropical leaves in Kmart for $3 in various sizes and styles too. I know pillow talk have some too. I am hoping on the next day Russ has off to look at placement of the wooden and artificial leaves.
I know we are trying to fit a lot into such a small space and I do hope that in the end it all looks as homey and relaxing as it does in my head. I am hoping now that I have written this that it holds Russ and I accountable for getting our house sorted. I know 12 months ago I didn't think I would still be here today and I know the outlook isn't too great for the next year, but I just really want to feel calm knowing my house is in order.... literally and figuratively! I want to not feel anxious over if I have done enough or if people are judging me.
I am really wanting my room to be my tropical escape as I won't have the ability to travel there myself I want to bring it to me.
I am also not an interior designer or stylist, so I don't know if the mood board I have in my noggin' is going to work, I will just have to see won't I!
If you know of any tropical themed wares over the coming weeks and months feel free to let me know so I can check them out. I am really wanting to have my room finished by Christmas/New Year at the latest. Plenty of time I know, but if the last 12 months have taught me anything it is that Russ is a snail (when it comes to getting things done) and time certainly does flies by!
So tell me, do you have a themed/styled room or house? Which room of your house is your favourite?
Sunday, July 16 2017
I am going to set a scenario:
You have been called back to your doctor's office to review recent tests done and while you're waiting patiently (and anxiously I might add) to find out what has or is going on you can't help but hope that you will hear these three words "ALL SEEMS FINE". You try not to think about what you will do if that doesn't happen as you don't want to "rock the boat" or whatever the colloquial phrase is.
You know speaking of things you tell yourself, I was in hospital once with this lady who told me that she "willed herself to get cancer" and that it is possible that I did too... It is safe to say we were not on the best of terms and those 4 weeks of my life were horrible!
So back to that Doctors appointment...
The door opens, the receptionist calls your name and you walk in and take a seat. There isn't often time for small talk and the Doc gets straight to the point. "The results are in.... the test show you have [insert illness]....". By this point you may have zoned out completley (why you should always have backup) and gone into shock, it is naturally your bodys way of protecting you.
But you will leave and head home, all while you are wishing you knew what the doctor said.
Instead you turn to DR Google and start googling your disease and symptoms. You shouldn't have gone there, you have opened yourself right up to trouble and a vortex of stress/worry! Dr Google brings up all this images and medical reports that are so grim and scary and you feel yourself on the brink of a panic attack...
You compose yourself and stop for a moment...
You know NEED support but you don't know where to turn... so that is where this post will hopefully provide some insight.
Where to find support and information after a diagnosis
I know the above scenario might seem over the top or seem unlikely, but I can tell you that it was from my own personal experience on how I handled situations where I got bad news.
I learned Google was not my friend nor was Dr. Google, I found after the first few times that it really wasn't helping the situation aside from making the diagnosis a bit traumatic.
But here are ways to find support without causing yourself harm in the process:
#1. Speak or consult with a professional:
So I booked another consult and took my husband with me this time as he was eager to hear the plan going forward, and to be honest so was I. He told me the game plan going forward, my hubby heard it all as I zoned out again, but he referred me to a stomal nurse. She became my biggest life-line these past 4 years and has helped me on so many occasions.
It is important to really get a good grasp on what is available, so don't underestimate the support from the professionals.
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#2. Lived advice and experiences are very valuable and helpful:
One of the benefits of learning from lived experiences is that it can offer you a perspective or advice that a Doctor or health professional might not necessary know, and while a Doctor might know the text book side of things they might not be able to give you a total view of things. Still refer to your doctor for any health issues and management, but don't discount the account of a real person either.
How will you find these types of advice?
Keep in mind:
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#3. Search on facebook for groups or support groups:
You can also google "support groups for _INSERT DISEASE_" as there are some forums online and support websites dedicated to helping to support you during any stage of your illness.
I learned a lot from connecting with others in groups, especially about treatment options or stoma issues, so there is a lot of value in groups.
Keep in mind:
Some members posting might be partners or parents of a person who is unwell, some groups only allow patient members to join others allow carers to join too. If you are a carer and if your daughter or son is in the same facebook group as you, be mindful of what you post ABOUT THEM, it is their story to tell afterall and you might disclose personal details that they hadn't told their best friends let alone strangers online, so be mindful of their privacy and respect what they have told you in confidence too.
One last thing I have to add is sometimes being a member of facebook or online groups can get a bit too much at times, I know when I am struggling myself I tend to either leave the groups or I turn off notifications so that I don't see posts on my feed, sometimes it gets too much dealing with your own health issues and being privvy to others' too.... it can feel like you just can't escape your disease, and sometimes you go to facebook to just escape life and it is hard when you are surrounded by your reality online too.
For me, I struggle a lot of times with my mortality and hearing/reading about a member of the group who passed away is really confronting. Friendships made online are real and just as much valid as real life friendships, so it can be hard at times when a friend passes away.
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#4. Ask your Doctor, Nurse, Case worker, Counsellor or Social worker for local support:
Otherwise you could consider making a flyer (canva is a great place to start and east to use) and you could advertise your new group in the paper, on noticeboards or even online in local groups!
The above suggestions are just a few ideas I have used on finding support after a new diagnosis, if you have any suggestions feel free to let me know in the comments below!
I know that a new diagnosis is hard and can come as a shock but googling your diagnosis or illness will only cause you more upset and harm you, these are ways I have found support after a new diagnosis that is not only positive and supporting but it is constructive as well.
Dr Google doesn't always have the right answers and can lead to damage or traumatising you, which isn't what you need when facing a new diagnosis.
Take a deep breath and big hugs, there is always support out there just waiting for you to find it. It might not always be an easy or quick overnight find, but be patience and perservere, someone out there at some point felt alone too.
Please be kind to yourself, this is a hard and stressful time. Take some time out for you and self care and try and do something that makes you happy or takes your mind off things. Here are some things I do for me and to add happiness to my day
If you're in hospital and are looking for things to do to pass the time, I wrote an article in issue 1: of The Ostomistic Life (pages 34-36).
Tuesday, June 13 2017
“Life is 10% of what happens to us and 90% how we react to it”
Facebook memories can sometimes be a double edged sword. On one side it shows you the silly and mundane status updates that have you questioning what on earth you were thinking way back when. Then there are the moments that your life changed in an instant in what feels like a lifetime ago, but was in fact a year to date. It has the power of instilling those emotions you felt at that time and can feel like a sharp stab at one’s own heart.
Sometimes it can be bittersweet and reminds me of the little ‘wins’ in life: like the time my husband got his P’s after 20 years as a learner driver and I felt immense pride for him but cried tears of relief that I now can take a step back and not be the sole driver; or that time that I drove a 4 hour round trip to spend Good Friday with my family (having had chemo the day prior) and felt so sick, but I was able to hold my nephew for the first time since his birth and he smiled and laughed with me and in that moment I felt an overwhelming sense of love and happiness, as if all is right in the world, for that boy has the most infectious smile that makes you feel so happy.
1 year = 12 months = 365 days = too many minutes and seconds to be happy
Today’s memory however, was that it was 12 months to the day that I was told chemotherapy was stopped, that I had exhausted all other options and was admitted to hospital under palliative care… I was given 12 months to live.
I remember that day clearly, I had turned up to my chemo appointment thinking it was a normal chemo day. I drove myself to the hospital and had expected to drive myself home; instead I called hubby and told him I needed him.
I remember feeling so terrified, I was scared now having been given a timeframe and I didn’t know what to make of any of it. What if I did life wrong, what or how was the best way to spend each minute of the day, was there even a right way? I didn't know what to do, I just knew I wasn't done trying just yet.
But amongst all the fear felt, I also felt so much guilt. I felt that I had failed my husband, my family, my friends and myself.
Most of all I wasn’t ready for the end.
I remember crying so much that day just being held and consoled by my husband, we cried together and despite no words being spoken we knew what the other was feeling.
So I started writing my bucket list and planning how I wanted to spend the next year, particularly, my final moments. I began organising my funeral and how I wanted my life to be celebrated. I tried to include my loved ones in organising/talking about my funeral and joining me on bucketlist experiences in the hopes that it helped them somehow.
But one thing I knew for sure, was that I was determined to spend the next year living life as fiercely and to the fullest as possible.
Choosing my legacy and how I want people to think of me:
I wanted people to remember me not for the hardships I faced but for how I chose to face life, I wanted people to not pity me but to think “hey that is one strong, badass and positive chick”. I didn’t want the next 12 months of health issues/decline and struggles to define me, I was determined to try and help others.
I feel like the last 12 months have been incredibly exhausting, I feel like not only have I struggled with daily challenges but that I also have lived the most I possibly could have too.
In the face of adversity and a time I should have been selfishly focusing on myself, I started a magazine for other young people with a stoma that has been well received all round but also what I hope will be my legacy.
But my determination to try and help others didn’t end there:
I have tried to empower people to make better choices through learning from my mistakes, I have tried to challenge people to think about how they talk to or treat someone who is chronically or terminally unwell, I have tried to help others feel less alone in sharing my story openly and I have tried to encourage others to live their life as they see fit.
The last couple of weeks I have been struggling with depression and felt myself in a downward spiral. I have been told I am dying too slowly, that I am a burden on Russ, that I am a fraud because I am not on my deathbed now; all in a matter of weeks.
I am feeling a lot of self loathing (and as a failure) as I had hoped a year on our finances would be in a better state, that things would be less messy and more manageable for Russ to takeover. Yet, despite all the frugal efforts made, I still don’t feel things are better 12 months on. I had also hoped to be prepared enough and finish my funeral preparations by now too.... but things need a lot more working done. I also hoped to have saved/paid off my funeral too (I don’t know who I was kidding).
I just regret not having life insurance so much, it could have made life a heck of a lot easier.
So please if you can learn anything from this story is to never just take one opinion/advice from a person who is “an authorised representative”, to always get another opinion.
I HAD life insurance and when I stopped working I was told that my life insurance would be void if I had no EMPLOYER contributions made, that I couldn’t just make them (the contributions) myself. My insurance lapsed as a result. I later spoke to them again (6 or so months later) only to be told that the information I was told was incorrect and I could have made contributions all along and I would still now be covered or be receiving the benefits owed to me.
That one person who incorrectly advised my rights has caused so much stress and inconvenience to my life and while I have been told that person no longer works there I have been left to live with this mistake $600,000 poorer… I didn’t question the advice as it had come from someone at the company, that I assumed them to be right.
If only someone had of told me to get a second opinion.
Same went for my thyroid cancer, a respected endocrinologist told me there was nothing wrong with my thyroid and a week later I was in Sydney having thyroid biopsies done as it was actually cancerous, sadly in “the sticks” there isn’t always a second opinion you can get but I am lucky that I sought one in Sydney. Or that time I was told I was diabetic from a Doctor without any testing being done and started medication, it didn’t feel right and made me sick, I saw a different doctor a month later and was diagnosed with anaemia not diabetes.
Moral to the story, if it doesn’t sound/feel right always get a second opinion.
Your best teacher is your last mistake
Though all of these moments impacted on my life, I learned valuable lessons about myself or others around me.
If you do happen to make a mistake along the way just learn from it, don’t be too hard on yourself and be forgiving - you wouldn’t really be living if you didn’t make mistakes. Just learn from them and make yourself more informed for next time.
So here is to time and life, may we all take everyday as it comes and try to stop every now and then to take it all in, or smell the roses as some say. Life is so precious and I am just grateful to still be here 12 months on and living by my promise of trying to help others. So learn from my life if not for helping yourself, help someone you know.
Time and life is something that can go by so quickly and before long it is a year or 5 years later, so it is important that you make the most out of it. To be cliche and all, it really can be taken away at any time. I know I am cherishing everyday I have; as I know age, time and life are all a privilege.
“Life always offers you a second chance… it is called Tomorrow!”
Friday, May 05 2017
NB: This post was also written to be published on abiggerlife.com
This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.
So you can imagine how much I had to learn and understandably was very overwhelmed with information.
One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.
So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!
I wished I knew these when my life with a stoma began 4 years ago...
#1. A hairdryer:
p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.
#2. Invest in some supportive garments:
With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.
In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.
#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.
#5. Gastro stop or loperamide:
#6. Linen and mattress protection:
#7. Stoma supply storage:
#8. Wet wipes or Chux cloths:
#9. Scented garbage bags:
#10. Room spray or freshener:
I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate.
You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.
Sunday, April 09 2017
One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.
It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.
So in June I stopped treatment and entered palliative care.
A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.
It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.
So I had been planning a little bedside table makeover for a while, well had talked about it.
It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.
So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!
We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.
Some of the items had been found on clearance or at a cheap price.
So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.
My brother said it had to have a necklace in there too.
So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.
So now the memorable (and humiliating) part to the story....
The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.
My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.
I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!
"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".
I can now pass on knowing at least I have left them with one solid and hilarious memory.
Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.
Saturday, February 18 2017
One of the ways I got through my teenage years, was with the hope that one day I would meet my prince charming who would make me feel like a princess, his princess. I romanticised every encounter or relationship I had, always invested in that perfect rom-com moment where I fell in love and lived happily ever after.
My friends thought I was just setting myself up for disappointment and yet again heartbrake, where they would be needing to pick up the pieces and glue me back together... my friends were good like that. They also became rather protective of me too.
So fast forward to 2009 (18), where I desperately needed a laptop as mine was drowned in the (then) recent floods and was hard to keep up with the demand of uni assignments when you didn't have a laptop.
I headed into my local electronics store, walking past the door guy who looked more focussed on watching the latest movie that was showing on the massive LCD TV's that were covered with signs that made you think it was a not-to-be-missed sale, never to be repeated. I walked past the out of service vending machines and an independant ATM machine, one of those "we will charge you $2" to proceed types. I walked through the camera and telco departments when I finally found the computer department.
I wasn't sure what to do, since this was my first "big girl" purchase without a parental unit chaperone. I just stood there lost and staring at the 50+ options of laptops in front of me, confused as to what do I do next.
I wasn't standing there long when this salesman approached me. He was fairly tall, which wasn't a hard thing to notice since I am 5 foot 2", was rather skinny and wore an old set of glasses that looked to be 10 years old. He seemed shy, yet when he spoke about computers it was as if he just looked alive with passion; and there was this look in his eyes when he spoke, that you could trust what he is saying as the truth and not just a sales pitch to try and close the sale... he was really genuine and honest.
Even his attire and how he presented himself made me feel he was humble, down to earth and kind of daggy, which I liked; he didn't feel pretentious at all... just genuine what you see is what you get kind of guy and I admired that. He wore a black collared work shirt that had these weird pleats in the side with a yellow panel (I would later learn these were a massive pain in the ass to iron), the jeans he wore were a light denim in colour and he rolled the bottoms of his jeans up so they sat around his ankles.
I had this immediate sense that he cared about the customer, in a way that he didn't want you buying something you didn't need and he kept trying to talk me down from the higher end of scale laptop that I wanted but didn't necessarily need.
However, as a broke and unemployed uni student I thought I would try my luck at financing a laptop since desperate times called for desperate measures. I was falling behind in uni, so I was willing to consider any avenue possible to get a new laptop and get back on track.
So it wasn't very surprising when I was in fact declined for finance, I even went so far as to try EVERY way possible but I was out of luck.
I didn't want to leave empty handed, so I worked up the courage to ask for his number, which without hesitation refused and said something like "it's against store policy as you applied for finance if I were to take your number". I called bullshit, but he still refused.
But I was utterly confused as to why, I felt we had hit it off. We had chatted and laughed for hours while I attempted to finance the laptop, even had our own inside jokes.
There was just something that in all his honesty, that I felt was sexy in a guy... considering every guy I had met to date were douches who were either so focussed on looks and appearances, were the dangerous boy types who were forbidden (which made them more attractive), were the sporty jock types who prioritised their sports over your relationship, or the mum's boy types.... so it was rather refreshing, and a welcomed adventure when I encountered this kind, funny, considerate, nerdy and genuine guy.
But it ended there.
For the next 3 months I would try and utilise the shared computers at university and applying for credit cards or scholarships to try and help me to fund the laptop, but often I would be waiting for a long time for my turn for the computer in a line.
When I did win a scholarship at the begin of semester 2 I dreaded the thought of returning to the store and in the event that the sales guy remembered me it would be so humiliating. So I decided to dye my hair a purple/burgundy colour and to cut it really short in the hopes that he wouldn't recognise me.
I felt so confident and headed into the store, meandered the recognised path towards the computer department and was rounding the corner into the IT section when he saw me. Instantly dreading this and realising it would be rude if I just pretended I didn't see him, I walked towards him and smiled.
He smiled back and said "It's Talya, right?". Muttering a few curses, I replied "Umm yes, it is". He continued by saying "I told myself if you ever returned that I would get your number, I have regretted it every day since".
So that time I actually left with my intended laptop, his number and the hope that maybe this dream of falling in love might come true afterall.
Just like any rom-com movie it isn't always smooth sailing and theres a few bumps along the way, often tragedies, that can bring two people closer together or can tear them apart... and that has been our story, one heck of an epic love story that should really become a feature film.
We started dating knowing full well that a month later I would be having my first brain surgery, which led to multiple surgies and a 3 month hospital stay and also our engagement at just 3 months together.
On our 12 month anniversary we were married, it was an intimate gathering and budget friendly, but it was also simple in the way that there was no fuss and it was a low-key affair surrounded by those we love dearly. It was a day where we wanted it to be just about us.
But we have faced our fair share of loss and stress: misscarriage; diagnosis of my dad's cancer and learning I inherited the gene; being held up at work and struggling to come to terms with anxiety and a diagnosis of borderline personality disorder; finding out that I have severe stage IV endometriosis and as a result I am unable to have children; a week later learning at 21, I have early stage bowel cancer and would need surgery to remove my bowel; months later had surgery and my first ileostomy surgery was had, survived being close to deat and learned to adapt to life with a stoma; getting severe recurrent pancreatitis rendering me in hospital for the next 12 months; discovering a large tumour where my bowel used to be; thyroid cancer and subsequent thyroidectomy, again close to dying; learned I now had another tumour that was growing rather quickly; started chemotherapy and spent more time in hospital which led to tumour needing to be removed as it was dead and my body was decaying; resuming chemo; learning I had 2 large blood clots; a new tumour discovered on my ovaries; chemo stopped and entered palliative care.
I am sitting here in tears, as I have been moreso the last 6 months, as I just don't know if Russ is going to be okay.
Russ has autism and if it has taught me anything in our relationship of 8 years is that he doesn't cope with change well. We moved house and it took me 12 months of building him up for it as change is unsettling for him, he is only just settling in with his new routine and it has been 5 months. He even had his learners for 20 years and got his p's last year and I was so incredibly proud of him, it gave him independance and took a lot of pressure off from me and meant that I can focus on my pain management and not needing to worry about driving.
He told me recently that he is so proud of himself and that he appreciated me being patient over the years to research how to help and encourage him to embrace change. I read up on autism parenting blogs to help, even though he was an adult I found some of their advice helped me.... I learned patience and to try and do things differently.
He also doesn't cope with his emotions very well, he struggles understanding what to do with them and death usually leads him to shutting himself out from the world. He doesn't know how to deal with what he is feeling and as a result can lash out or just become more recluse than he already is... I saw this when my dad died.
I have started studying counselling so I can learn coping mechanisms to teach him, I know he won't be okay as much as I wished he would be, but I am trying my best to help him.
It's rather upsetting and stressful feeling all this guilt that I have, that we have built the most incredible lives together and lived the most epic love story and it is going to come to an end. I worry about him financially and if he can manage.
He conversed with his boss yesterday about what happens in the end when he needs time to grieve what is available. He has been so worried that he might not be ready to return so quickly after my death because he has no more leave and would take leave without pay and as a result would not be able to pay the mortgage... and he has been rather anxious about all this.
So I spent so much of last night crying, because I feel guilty.
I feel guilty that he is having to worry about all this, that he has limited time to grieve before having to pull himself together to go back to working, all because I didn't have life insurance. It is one of my deepest regrets and I feel like I am irresponsible as a result. I only have under $3k in super too. Even on our homeloan the bank wouldn't cover me with insurance, 'cause terminal cancer and all the credit cards are in his name not mine so that won't even be a relief.... it is such a worry and stress.
I just hope he will have support, I imagine he will in the initial week, but I worry what will happen after that.
Saturday, February 04 2017
The moment is here - The magazine was born!
Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.
When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!
I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!
I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.
Thank you for sharing in this exciting moment and happy reading.
ISSUE 1 | The Ostomistic Life eZine
I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)
If you love it let me know.
Work on issue 2 has begun, click here to sign up to receive the next issue straight to your inbox. For articles I am looking for or if you have a topic you want to discuss please get in touch. Some ideas can be found via the pinned post below or on the facebook page.
Friday, November 25 2016
Earlier this year, I was on a Canteen camp for members aged between 18-25. At 'camp' we not only talk about cancer but Canteen organises various workshops that help to teach us valuable skills, and often skills that we can implement in our lives right away.
Some workshops are about stress management and coping mechanisms, others are about learning to cook healthily on a budget (first time ever making hommus) and the ladies from Newcastle Permanent came to talk about budgeting and to teach us tools to succeed. I really enjoy all this money related.. I love saving money, I love frugal shopping, I love bargain hunting but I also love spreadsheets and budgets (yes I heard you yawn), I really do miss my days working in finance at a bank.
Another workshop we had was about gratitude, creating a gratitude jar and telling people when/whom/why we are thankful; we also talked about what makes you happy and the value of people and memories over materialistic objects.
We were introduced to the Science of Happiness, which was a video where several people were asked to think of someone they are thankful for, to write down why in a letter and then they were asked to ring the person to tell them.
The study concluded that people who were grateful or showed grattitude in their lives were in turn more happier than those who didn't.
I highly reccommend you check out the video on youtube by clicking here, it is such a heartfelt experience... well for me it was anyways.
I have been feeling a little overwhelmed lately with my life and been struggling with facing my mortality at 25, struggling financially, but I also have felt a little lost around my self worth and value. Now, I don't want you to roll your eyes and think I am asking for sympathy or being an attention whore, I'm not trust me, I do have an important message if you keep reading on.
I decided to join some of those blogging groups where you learn how to make a lot of money blogging, kinda regret joining as it has me feeling more pathetic than I was before I joined.
Now blogging for me hasn't always or ever been about the money, I blog because I want to help others so they feel less alone, but then there are costs to running the blog like hosting fees ($30 a month) and sometimes I wished I could find sponsoring to not only help cover the running costs of the blog, but to also give me a little bit of pocket money.
So in this blogging group a coach talked about how if your blog isn't gaining the attention of sponsors or advertisers than you must be doing something wrong and that there is no value in your blog if people aren't wanting to advertise that the readers (you guys) are being sent the message that it isn't worth it.
So you can imagine I felt pretty embarrassed, pathetic and wondered is it worth it all?
So fast forward to this week, where I got an email from a reader who said:
I tell you what, I re-read that email several times each time with tears.
I felt pride, self-worth, appreciated and needed in the first time in a long time, and it was something I really needed to hear. While I see so many people reading my blog posts, I never know if anyone gets value out of them or if I am actually helping others. So it made the world of difference being told thank you.
I also realised that money isn't what makes MY blog valuable, it is me.
So it got me thinking just how good it feels to be told genuinely that someone is thankful for you or something you did, and that person also feels happier knowing they have made you happy.
So if there is a blogger who has helped you, please do ocassionally stop by and leave them a comment or an email thanking them, it made such a difference hearing that for me personally and I am sure other bloggers would appreciate it too.
While I have been feeling down lately that I didn't have much of a legacy to leave behind, I realised that this little blog of mine is what I am leaving the world with.
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel a little appreciated too.
Thursday, November 24 2016
I took the plunge this past week, and did something that has been on my bucket list for a while now.
I tried a CRONUT, and it was every bit mouth orgasmic as you would expect. Seriously, if you are in Woolgoolga (NSW) be sure to stop by The Next Phase on the main street for an experience you won't forget in a hurry.
But I did something even more terrifying.
I enrolled in a Diploma of counselling online, not that I have enough going on (cancer, facing mortality and living life).... but when I enrolled, before being accepted, I had to write why I wanted to study counselling.
Long before I was told that my disease is at the end stage, I wanted to study counselling and hoped that one day Feeling Ostomistic would branch out into counselling sessions online (via email, skype) or in person... so when I got my prognosis I made it a personal mission to study it before I cark it.
So there are two reasons why I want to study counselling, and both are pretty important to me:
#1. To help you:
#2. To help my husband:
So that is my two reasons behind enrolling in the course, the online college was pretty impressed with my maturity and selflessness... I really do try to lead as much of a selfless life as possible.
I just always felt my purpose in life was to help others, I just hope I can.
Monday, November 21 2016
I have never been much of a morning person even before I got sick, and the last year or so I generally don't start my day until later in the Morning.
Moreso lately, my health often sees me in bed until mid afternoon.
So it can be understandable that I might miss the occasional knocks at the front door, especially if I am in a deep sleep, or there's been many times where I have been in pain and tried to jump out of bed (read slowly stagger) to only get to the front door and missed getting to it in time.
It is so FRUSTRATING!
I always thought there should be a doorbell that can connect to your iphone and alert you to when someone is at the door, or better still if you could communicate with them.
So Russ and I in planning our house, we thought about issues like this and considered having an intercom system set up near our bed, but it was looking to be rather expensive.
But alas, imagine our delight when we found a doorbell at our local JB HIFI store that not only allowed us to get push notifications on our phone (providing our phone isn't on silent like last weekend where we didn't realise my mum was outside waiting for over 15 minutes), but also has video and audio too (acting as a video intercom)!
It has been such a help to me since we got the 'ring' doorbell.
Most of the time when I get out of bed my stoma is leaking, so it is rather difficult to try and get to the door in time with a leaking bag. So I have found it helpful when I am dealing with a bag leak or if I am in bed too sore to get up just yet, that when someone rings the doorbell I can see who it is and talk to them.
Often it is the postman with a parcel (not that I shop online a lot, but I get my Xmas shopping out of the way early and online) so it is convenient to say hello and to ask if the parcel needs a signature. I just explain that they can leave the parcel at the door for me and I will collect it when I can get to the door.
I also have spoken with the parcel lady before about having cancer and quote often it takes a moment for me to get to the door.
But it is also good having this doorbell when there is unsolicited doorknockers and I don't have to feel rude for wanting to slam the door in their face. I can just open the Ring app, see who it is and talk to them.
They also have a security camera system available too (we have a couple of cameras set up) where if there is motion in the area you get alerted to it, or you can live stream the video if you are out and want to check up on the house (or the kids) and you can also talk to and hear noises going on.
They are a little expensive, but for the convenience and amount of times it has helped me since we moved in over a month ago is significant. For me it is a tool that is helping me avoid hurting myself getting out of bed in a hurry.... and to give me a little bit of dignity in the mornings too.
DISCLAIMER: This is not a paid or sponsored post, I was not asked to write about the product by the manufacturer or by JB HIFI. I am also not biased on my opinion or experience because it was purchased from my husband's place of employment. I nor my husband receive any benefit by me sharing my experience on this product. This view is purely my own and I am sharing in the hopes that others (like me) who have struggled in the past with trying to get to the door in time, might now have a more convenient solution.
Sunday, October 23 2016
National Bandanna Day is coming up, and is this Friday the 28th of October. It is a day where people nationwide are encouraged to purchase and wear bandannas with the proceeds raised to support a charity called Canteen. You can read about the work they do by clicking here, or to read how Canteen has helped me personally, click here.
In the lead up to National Bandanna Day, I was approached by Canteen to be an ambassador (always wanted to be one) and talk about my cancer story and how canteen has helped me with various media outlets.
One of these outlets was a local ABC radio station, and I had always wanted to be interviewed on radio so I jumped at the chance.
Russ, my husband, was present with me the entire time I spoke and after I ended the call he praised me for how articulate I sounded and that he was proud of me.
I was a little nervous, but I made sure I was prepared.
I thought I would share 7 tips that helped me to stay calm and level headed during my radio interview, and I hope that they too help you.
#1. Find somewhere quiet to sit
#2. Remove any distractions
#3. Know your stuff, and know your 'why'
#4. Don't have a piece of paper to read off of
#5. Have a bottle of water handy
#6. If able to, ask what questions will be asked
#7. Know the name of your interviewer
I know these are only a handful of tips, but these really helped me in preparation for my interview and I hope they help you. Feel free to add your own tips in the comments too.
Also, keep an eye out on my facebook page for when the interview will be aired as I am not too sure yet.
P.S Not sure how to wear your bandanna or how to fold it? Click here for a HOW-TO printable guide
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
Wednesday, September 21 2016
This is not a sponsored post, we purchased the car using finance through the car yard
When I entered palliative care they asked me what would make my life more comfortable or aid me in living a better quality of life.
On this list was:
Of course only the pain management and wheelchair were something they could help me with from the above list.
However, I knew a car that was reliable, comfortable, easier to get in or out of and that fits the wheelchair was something of a priority for us and I knew it could make the world of difference to my ability to get out and about.
Our need for a new car:
Off I went to the car yard and found this beautiful 4 year old Ford that looked and drove like an XR6 (without the price tag), it was $20k and it was so fast! I felt so sexy when I drove it and I liked the compliments I got too. I loved the colour of the car too it was this blue with sparkles and a purple hint.
It was a nice car..... until things started going wrong.
A year later I had realised it was probably THE biggest regret of my life!
This car was incredibly low, like so low that it scrapes on every bump and you feel it, I couldn't even drive it down/up my driveway at every previous address over the last 8 years as it scraped the bottom of the car and I mean that horrible-cringe-worthy-type-of-grind it sounded so bad.
PLUS the fact that you can't drive over 100km/h or at the 1 hour mark as you had to pull over for 15mins turn the car off and wait for it to cool down... basically the car is driving on 4 out of 6 cylinders and told by several mechanics that it was an expensive things to repair and I didn't have thousands to just spend on a car not worth $1k. The car wasn't reliable, it wasn't safe and we needed a new car - but we couldn't afford it.
Back in 2012 we tried to upgrade to a Hyundai ix35 as it was higher off the ground and had sat Nav, Bluetooth etc. but we weren't in a good financial position to get a new car and our ford wasn't worth what we hoped or needed for a trade in.
So we kept waiting until we were in a better financial position which meant reducing our debt, working on our savings and hopefully getting our home loan.
Our existing car I haven't been able to drive for years as the steering wheel was low it sat on my belly which meant every time I went over a bump it was quite painful.... actually anytime I went over a bump it hurt so much. I no longer enjoyed driving and it became a chore, I would always ask Russ to drive if he were able to as I would be in tears most of the time. The car also was so low and was getting harder for me to get in and out; it was also hard to get the wheelchair in/out too, as you had to bend down low and it was getting too strenuous on Russell's back.
Fast forward to August 2016, we were getting ready to move into our new house and we went to the car yard to look at their i30 and i40s all the small cars for Russ to drive to and from work. Our car was no longer reliable and I was worried about Russ breaking down on the way to work, so something that gave us confidence in getting Russ to work safely was a must, as well as a second car could be handy so I wasn't stranded at home in case I needed to get to the shops or to doctors/hospitals.
We told the car yard how ideally we would love an ix35 but they were no longer manufactured and the replacing models "Tuscan" were way, way, way out of our price range - so we knew we could at least afford the smaller i30 or i40.
Finding the perfect ix35:
This was our one chance for finding a near new ix35 without the price (of a brand new model), so we were SO excited. Hardest part was keeping the secret until we got our keys.
We have debt to our eyeballs but we feel deep down that this truly is the best decision for us. A car that will assist me in getting out and about more comfortably and easily is so exciting!
I drove the car home, I haven't driven a car in over a year.... I did almost blow the car up! No, I am serious.... never making that mistake again!
Keep your eyes out for the future adventures that await! I am actually rather excited now for my future, despite drowning in debt I do hope we can manage. It makes me exciting thinking of all the fun and adventures ahead.
We can't wait to see what adventures unfold or the conversations this car will bear witness too.
Tell me in the comments below what the most memorable car you owned?
Monday, September 05 2016
Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.
While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.
And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.
☟ ☟ ☟ ☟ ☟ ☟
My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:
I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.
I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.
I know I’m not going anywhere.
The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”
Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.
Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.
Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.
We are only as good as our word. I gave her mine, she gave me her heart.
And you’re right, I am a good bloke......
Because I met her!
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.
*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.
I 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, September 02 2016
I am often asked and often daily, how do I remain so happy or positive despite everything going on in my life.
I am a big believer in self-care practices, and one of the tools incorporated into my day-to-day routine is doing at least 1 thing for me or something that I know will make me happy.
I also designed myself a 2016 calendar, with each month a different quote or positive message to myself. I look at this daily and it is pinned above my computer as a reminder of not only what needs to be done that month but a positive message to live by too.
A big part of my bucket list (also calling it my happy list) is mostly things that I want to achieve because I know that will make me happy.
But I also know that no matter how bad today gets, the sun will come up tomorrow and it is a fresh new day.... there are 365 days in the year and that is 365 opportunities to make yourself happy!
So I thought I would share at least 5 things I can do to make my day that little bit brighter.
#1. Learning to say no and knowing my limitations or delegating:
#2. Crafting or creating:
#3. Writing or journalling:
#5. Do something for someone else:
Bonus - Do something for me:
P.S Tell me, what do you try and do that makes your day happier or brighter?
Friday, August 26 2016
Today, and as it seems a lot lately, I am constantly met with doubt and disbelief when I share my story/prognosis or the fact that I am 25 and terminal with cancer. It almost always makes me feel like people assume that I am making it up.
For the past year my husband and I have been working on a new segment/section of my blog called 'The Ostomistic Husband' which will be posts and topics written by him and in the hopes of showing the perspective of how a spouse feels or views their loved one's illness.
So, take it away Russ!
☟ ☟ ☟ ☟ ☟ ☟
All too often I have Talya tell me how annoyed and upset she is because someone has just told her, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.
I’m sure you have heard the same from someone you know with an illness; it seems to be all too common.
I myself believe I have a mild autism which makes me: crave routine; shy away from human interaction; find it difficult to create and nurture relationships as I don’t readily say what I feel inside; have processing issues regarding certain tactile sensations, etc.
These things are not visibly apparent and are not easily discernible even when you are interacting with me.
Why? Because I’ve spent a LOT of time learning how to go about my day, to fit in without drawing attention to myself unless I feel safe to do so. As such, it pains me to hear that Talya is being judged by her outward appearances and not by the effort she makes to display her frightening lifestyle in a manner palatable for those around her. She is always trying to alleviate others…
I think that is probably the major force behind the “You don’t look like you’re dying of cancer so it mustn’t be that bad” line.
No-one wants to admit that a young person as outwardly vivacious and spirited as Talya could be dying inside, because that means that they too, may have something as monstrous within them (and not show any signs).
After all, they look fine. Don’t they?
Talya and I see this very differently.
She feels that people are constantly attacking her; sometimes bluntly and sometimes in a back-handed way.
I feel that people are constantly protecting themselves; outright denying the facts about her health (in fear for their own mortality) or suggesting that it can’t be as bad as all that (simply hoping that it could be true, were they in that position).
People don’t want to accept change, they are afraid of the unknown. I get that, more than most.
In the private studies I’ve made on human nature, and by simply watching people react to a situation then react to their own reaction, I believe that people are generally afraid inside (and what a perfect evolutionary trait in self-preservation that is). Some have learnt to deal with that most primal of instincts internally, while others still say, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.
All in all, I feel for Talya a great deal in the aforesaid circumstances but I remind her that she is simply better at hiding her pain than some others are at dealing with their fear.
I say, “If they want to blurt out hurtful statements, without understanding what you are going through, to make themselves feel better, that’s on them, not you. But please, see it from their point of view too”.
No-one wants to live in fear.
About the Author:
*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.
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?
Monday, August 01 2016
Last year I heard about this incredible organisation called Share the dignity, which is a charity that helps to support homeless women and women in need when it comes to 'that time of the month'.
Their slogan is "no woman should have to choose between buying food or buying sanitary items", this really struck home for me.
When we often think of homeless or poverty we imagine people living on the streets, in their cars or in refuge shelters. But this isn't always true. You can have a roof over your head and be poor or poverty stricken.
According to the Australian Council of Social Services (ACOSS) there are 2.5 million Australians living under the poverty line, which for a country deemed 'the lucky country' that seems like an awful lot to me.
When the campaigns from share the dignity were being shared around on social media, there were comments that I observed that went along the lines of "that is an exaggeration surely, you aren't that poor that you can't afford pads or tampons or choose between that or eating"... as I said it was the general gist of the conversations going round.
But I know firsthand how stressful and hard it is when you do get your period and you honestly have to make the decision between buying pads or food... because it happened to me on several occassions.
When I was a teenager I felt embarrassed each month to ask for pads or tampons as I knew they were another expense we couldn't really afford (and I felt guilty asking). So when I got my first job I was rather elated that I could take responsibility for myself and I had money to buy pads and other personal care items I needed. I was independant and I didn't have to ask to buy them as I was in control of my own money.
I took living at home cheaply for granted and it wasn't until I moved out of home that I realised that rent and living expenses are so costly!
The day after graduating year 12 (Nov' 2008) I moved to Brisbane and was living in share housing. My rent was $100 a week and all the utilities were shared. I needed to pay for a train ticket to and from work and leading up to Christmas I had a lot of work and was doing okay... then Christmas came and went and the hours dropped to 8 hours a week which was $80 there about. I wasn't entitled to centrelink as my dad earned too much (even though he wasn't financially supporting me, it didn't matter to them). I was struggling to find another job and I was struggling to pay my rent and had to keep borrowing $20 off of a familly member each week to cover my rent. I didn't have money for food, I didn't have money for the train, I didn't have money for pads. I tried to stay at my boyfriend's house through the week so I could eat... it felt so humiliating!
Then my plans to study at university in QLD fell through, and I was offered a HECS supported place in Coffs Harbour so I moved. Centrelink finally offered me youth allowance which was $290 a fortnight. The house I was renting was $145 a week so my centrelink was consumed by my rent. I had to resort to borrowing $20 each week (off of family) so that I could buy food and pay for the bus to uni (I couldn't afford petrol). I tried so hard to find a job but I kept getting knocked back. I was a struggling uni student.
But there were times where I had to choose between food or pads, and it was a difficult decision. I have endometriosis so my periods were always rather heavy and it meant that I needed more than 1 packet of heavy pads each month, and I am allergic to pads but found the Libra overnight pads to irritate me the least (but they were costly)... but for that week that I had my period I was literally living off of those cups of noodles that you add hot water to and it cooks it... there were nights where my housemates took pity on me and would cook extra food that night so I could eat properly.
Then I moved into a cheaper share house where the rent was only $120 a week so out of my $290 a fortnight payment I now had $50 a fortnight. I felt so rich! I didn't have to call up family desperate for $20 anymore and my housemates cooked everynight and were happy if I gave them money towards groceries and they let me eat with them... also meant I had money for pads each month.
Unless you have been in that situation, you don't know how satisyfing and what a relief it feels to know that you don't have to choose that week between eating or buying pads.
At the end of 2009, my situation changed and I moved in with my then boyfriend (now husband) and his rent was only $180 a week so we went halves and it meant my fortnightly student allowance could go even further.
How you can help to share the dignity.....
So this August I ask you when you're next doing your groceries to buy an extra packet of pads or tampons and drop off to one of the Share the dignity collection points, so that they can be distributed to charities such as womens shelters to help women in need to have dignity when it comes to their period.
To find a collection point or learn more about what they do, visit their website.
P.S they also have a #itsinthebag initiative where they ask you to fill a handbag with a list of essential items and it is handed out to homeless women at Christmas. I am working on 3 of these handbags to pass on, these are handbags I was no longer using (and still in good condition) so what a better way to give them a new purpose! Find out more about this campaign here.
Monday, June 20 2016
It was almost a year ago now that my husband and I finally got a pre-approval for a home loan, after trying for over 6 years!
We were looking into buying an established house, and then a townhouse within a resort (but the strata was over $12k a year), so we were back at buying an established house. But we struggled to find something within our price range and budget that didn't need work done to it or had a pretty decent (and not squishy) bathroom.
But we couldn't find one that we fell in love with.
We then thought about buying either a block and building on it or a house and land package. We were out at Woolgoolga (where we have been wanting to move to for 6 years) and found the perfect house and land package that was well within our budget (and meant a little left over at the end for incidentals).
But when we enquired that afternoon, the contracts had just been put through and signed and was no longer available.
We felt a little disappointed that we missed out, but on the way home I decided we would call into the display home at North Sapphire Beach and just ask if they had any others coming up in the area within our price range.
The sales guy said there was actually a bigger block of land that was also cheaper that had come available that morning (due to finances falling through) and if we wanted a bigger house than the other house and land package offered that it was certainly affordable... all we had to do to secure the block so it wasn't available to anyone else was pay a deposit of $1000 which we did on the spot (we weren't letting this one go).
So fast forward to November and the land was finally registered with council, which meant we had 28 days to finalise our finances and sign the contracts, which happened a couple of days before Xmas... what an expense Xmas present to us!
So it wasn't until March this year that the slab was laid and the framework started, and we have been told last week that we are at the 4 weeks to completion mark, and I just cannot wait!
But during the process of building, especially as this is our first house and we have never built before, there were some things that we hadn't factored into our budget or allocated money to, and I thought that I would share these in case they help you too.
#1. You start paying electricity bill when the house starts getting built
#2. Budget in an extra 2 months of rent to allow for delays
#3. If you are renting, consider cheaper options to live to make building and living easier
#4. Really know what is and isn't included in your build
#5. Ensure that there is insurance on your house from the moment construction starts
#6. Ensure that your insurance is ready to kick in a couple of days before the hand over of keys
#7. When buying furniture or planning your space, take your house plan and measurements.
#8. Prepare to need to upgrade somethings as the house comes with very basic versions
#9. Before the build starts make a inspiration board
#10. Try and allow money for turf, fencing and blinds
#11. Consider buying giftcards to coles or woolworths for those weeks where money is tight
#12. Go into the tiler supplying your build and play with tile orientation
I am sure that there is more to add to this list, so I will continue to add to it and edit it as I think of new list additions. But for now, I hope these 11 tips help you if you are considering building a house.
Sunday, April 10 2016
We know that chemo can be toxic to ourselves and we can get sick, but did you know that it can make those around us sick too if they are exposed.
Before I started chemo, I was invited to attend a chemo education session where I learnt things about treatment, nutrition and what it means to be cytotoxic.
When you have chemo you are considered 'cytotoxic' for the next 7-10 days. This means that your bodily fluids such as urine, tears, sweat, saliva, semen, poo and blood contains chemicals that can be toxic to others if they are exposed to it. They can be near you and not get sick, just as long as they don't come into contact with your bodily fluids.
So when you have chemo it is important that you be mindful of what you're doing to help protect those around you.
Here are 10 steps I take to ensuring the safety of others around me when I am cytotoxic
#1. Double flushing the toilet with the lid down
#2. Try and use one toilet for my use only
#3. Don't share drinks/cups
#4. Don't share food/utensils
#5. Use condoms if having sex even if it is just oral
#6. Double line your garbage bags when disposing your stoma bags
#7. Make sure you have disposable gloves handy
#8. If you are holding a newborn
#9. Wash soiled items seperately
#10. Wash your hands and make sure others do too
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.
Thursday, February 04 2016
NB: Some images of my stoma and ulcer might be confronting, proceed with caution view at your own risk
For the past month I have been dealing with a new challenge in relation to my stoma.... not that changing my stoma bag isn't enough of a challenge but I have had to deal with an ulcer that had formed mere centimetres from my stoma and required a lot of attention.
I was in hospital early January (the day after New Years) with an infected portacath, and I did a bag change before I went off to surgery and there was this giant ulcer which just more or less appeared near my stoma.
Boy was it sore!
It was fairly deep and over the first week or two was painful to touch but thankfully 5 weeks later, the ulcer has almost fully healed.
But it was certainly confronting and I learnt some new techniques and products (which have become a lifesaver).
I also owe a lot of thanks to my stoma nurse, without her advice and knowledge I would not have known what to do, and luckily she has had plenty of experiences with ulcers near stomas and knew what to do.
I don't want you to feel alarmed or worried that you too will get an ulcer, mine just happened to be caused from a necrotic tumour that is dying and causing an infection under my skin, and that infection was trying to break out to the surface and the pressure formed an ulcer. I hope you aren't unlucky and don't endure this, but hopefully I can share my experience and tips that might help you too.
Some of the products I recently learnt how to use and some application tips:
#1 - Prontosan
Application: We soaked some cloth in the solution and then placed the saturated cloth over the wound for around 5 minutes, letting it soak in
#2 - Kaltostat
#3 - Coloplast stoma paste
#4 - Eakin Cohesive seals
-----> Now I applied my stoma bag and secured it with the elastic tape seals and now I was ready to face the world
If you're in Australia, these products (minus the prontosan and kaltostat) can be ordered through your ostomy association if you need some assistance be sure to ask your stoma nurse.
I highly suggest if you do get an ulcer or experience skin breakdown near your stoma that you seek the help and advice from your nurse or doctors. My blog is merely a sharing of my experience and tips and I am not a healthcare professional.
Sunday, December 27 2015
Late last year, I decided that I would organise a fundraiser event for a charity I have been personally involved with the past 3 years. This charity is called Canteen and they help support young people (like myself and my siblings) who live with cancer in our lives.
We first became members back in 2012 after the loss of our dad to cancer, and they have been a huge support to me while I have been on my own cancer journey. So I wanted to do something to show my appreciation and have a bit of fun, and that was to host a Halloween themed high tea!
The turn out was great, so many dressed up and we raised a total of $1200!
To the attending guests they thought the event ran smoothly, but for me I realised so many things I could have done differently and I thought I would share these with you all. To see the full page of the event sponsors and images courtesy of the professional photographer who donated his time to run our photo booth, click here now.
10 mistakes to avoid when hosting a fundraising event
#1. Give yourself plenty of time to organise it
#2. Have a committee or team to help you
#4. Make sure your phone is charged
#5. Get an MC
#6. Time management
#7. Find monetary sponsors for the event
#8. Don't forget to thank your sponsors or supporters
#9. Get the support of local media behind your event
#10. To save costs do as much DIY as possible, trust me it can still look awesome!
I also made the trophy to be awarded to the best dressed, which I found some plastic couldrons and plastic mouldable skeletons and created a funky trophy.
I also used the plastic cauldrons to make little gifts of lollies for those who would win the group trivia games.
So if you're wanting to host a fundraising event, I highly recommend it! I still have people telling me over a year later how much fun they had and even on the day I had people asking when the next event would be held. I had hoped to run it again this year as an annual thing but I have been too sick to do it this year and especially undergoing chemo it was just too much pressure I was putting on myself and hope that one day when my health returns and I am in a better position I will host an event again.
Thursday, December 17 2015
November (like October) involved not as much chemo as I would have liked and meant more time spent in hospital.
NOV 3RD, 2015: Had chemo today, was the first day in 3 weeks that I have had it was also Melbourne Cup day. I felt rather seedy the following day(s) and rather tired. Even the blandest of foods I couldn't stomach and wasn't until a few days after chemo that I actually ate something. I actually ended up being admitted into hospital on the 5th of November with fevers and suspected infection somewhere. I had a CT scan which showed my tumours haven't shrunk but they hadn't grown much.
NOV 10TH, 2015: No chemo today as I was in hospital
NOV 17TH, 2015: Had chemo today, was the first day in a fortnight I had chemo. My mum picked me up early and we went and had lunch by Mangrove Jacks, it is this really lovely restaurant situated on Coffs Creek and is majestic.. such a tranquil spot! Was rather funny at lunch there were these seagulls in the water being chased by big fish, the poor birds were paddling their little legs as fast as they could to get away!
My port bled today for the first time in ever, which had me excited that maybe all the issues of my port were behind me. I did wake this morning to a bunch of sweet texts from my sister (14) and brother (18) wishing me best of luck for chemo. I am loving the family support recently, it is reasurring knowing you're not along in this huge battle.
I started some new medication today, my oncologist prescribed me lorazapam which I am to take the night before chemo, the night after I have had chemo, and the day after I have chemo which will hopefully help keep my body calm and works well with my other medications he gives me during chemo like ondanzatron.
I had fevers a couple of days after chemo, but with some panadol I was able to manage the fevers at home, but have been sufferring bad with kidney pain and migraines.
NOV 24TH, 2015: Didn't have chemo today, they tried to use my port but it wouldn't even flush saline through! I went and had a portagram done, which is a scan of your port to see if it is working and turns out the thing is blocked! I have to come back on Thursday (26th) and have a procedure done to unblock it.
I decided to wear my storm troopers headwrap to chemo today along with my Dior lippy I got from Look Good Feel Better workshop (loving the pink!). I got a lovely compliment from the volunteer today, she said "you always look pretty with your hair wraps". A compliment from a stranger always makes you feel better.
NOV 26TH, 2015: Today I am having my port unblocked. It is a surgery that requires the doctor to make an incision into my groin and going in through the artery he can feed a cable up past my heart and chest and to my neck where my port is and unblock it. The surgery went well and was a success and the port started bleeding back. The surgeon also was able to reposition the port so it wasn't sitting so high up.
I woke up half way through the procedure and it was rather bizarre just laying there not able to feel anything but know that you are being poked and prodded.
Once I was awake, I had to stay in bed for an hour to reduce any complications post surgery and then I was allowed to sit in a chair, have a sandwhich and wait for a couple of hours before I could be discharged.
The incision site was rather sore for a couple of days and chemo will be scheduled for next Tuesday (1st Dec).
Even though it is month two of this chemo saga, it is only something like 4 days (cycles) I have had of chemo because of all the interruptions such as surgeries, port not working and being in hospital. Here's hoping things go a bit more smoothly next month... I am a bit anxious about Christmas and hope to be able to spend it with my family.
Tuesday, November 17 2015
Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.
I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.
I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.
While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.
But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.
I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!
I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.
This wasn't the only opportunity I have found by chance.
I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.
So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...
But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.
Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me...
In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.
So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.
My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.
So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!
Monday, November 16 2015
Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far:
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...
One month down, just 11 more to go!
Tuesday, November 10 2015
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
Monday 09.11.15 1PM AEST:
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
Monday 09.11.15 3PM:
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
Tuesday, October 27 2015
I have spent a lot of time over the last couple of years in hospital, often my stays (90%) have been in the public hospitals as a private patient and while you don't always get a single/private room due to these being given on an availability or clinical needs basis, it often means you are needing to share a room with other people.
There are two types of shared rooms in a hospital, there is twin share meaning there is one other person in your room or their is a 4 share room meaning you are sharing a room with 3 other people whom should be of the same sex as you.
I just got home from a 12 day stay in hospital and it reminded me of this post I started writing earlier in the year after having had spent 5 weeks in RPA and it was a horrible time mostly because I feel that others don't quite know or understand the etiquette that should be practiced when sharing a space with others... mostly it comes down to being respectful, but I will share some etiquette that should be followed (and if you have your own feel free to comment below).
Hospital etiquette when sharing a room in a public hospital
#1. It is not the time or place to LEARN how to play the ukulele
#2. Use headphones
#3. Rest periods mean rest periods
#5. Being in hospital isn't the time for a get-together
#6. Try not to be so negative
#7. Do not talk about others behind their backs
While this is just a short list of etiquette practices that should be followed when staying in hospital and sharing a room, it is important to remember to treat others as though you would like to be treated and it should just be common courtesy to be mindful of your surroundings and respectful of other's right to quiet and privacy.
If you have had a bad experience when sharing a room, feel free to comment below.
Monday, October 05 2015
NB: This is a sponsored post
Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.
A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.
In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.
Some contingency plans you might have (or need) in your life may include:
1. A will
2. A funeral plan
3. How you will pay your mortgage and bills if you were to lose your job?
4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
Saturday, October 03 2015
Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.
I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).
While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.
I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.
So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!
Stoma tips and life-hacks:
#2. Your boobs become a valuable asset
#3. Invest in a hair dryer
#4. You'll find many uses for your hair dryer
#5. Avoid foods that cause blockages
#7. Avoid drinks that cause winds
When out and about:
#9. Always pack a spare change of clothes
#10. Jeggings or any elasticised pants will become a staple in your wardrobe
#11. Baby wipes aren't only used for babies
Stoma kit advice:
#13. Invest in some sort of room spray
#14. Always have at least 3 of each item on hand in your portable kit
Storing your supplies at home:
#16. Never wait until you're on the last handful or box of supplies before you re-order
Mental preparedness and a stoma:
#18. For me, my life truly began when I had my stoma surgery
#19. If he truly loves you, having a stoma won't matter
#20. You can still swim when you have a stoma
[end of advice]
While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!
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.
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.
Tuesday, June 30 2015
NB: THIS IS A SPONSORED GUEST POST
In life, we all have our regrets and in hindsight wished we could go back in time and with the knowledge that we know now and not repeat the same mistakes again. I have many of these moments where I wished I did things differently or better and one of them was going to see a financial planner when I was 18 or 19 and something that was in place before I was married.
You see, not long after my wedding my dad broke the news that he was terminal with bowel cancer and that his type was caused by a rare disease called Familial Adenamatous Polyposis (FAP), which was caused from a mutation of the APC gene (a tumour supressor gene) and that it was also genetic. I underwent tests and was confirmed that I too had this disease, and as I was a newlywed I decided to apply for life insurance and was rejected on the grounds of the condition and as it is something that I have seen numerous insurers about and none can find an insurer willing to insure me as I am at high risk of cancer and more than likely will die earlier than healthy/normal peers my age.
Then I got sick in 2012 with severe endometriosis and required surgery to remove a 15cm round mass off of my ovary along with the lining of said ovary and removing/excising hundreds of sites of endometriosis. My surgeon said it was one of the most severe cases he had seen and especially in someone who was only 21. Because of the extent of the damage I was placed in a medically induced menopause which was truly horible. It made me so sick I was unable to work as I had these insufferable migrains and the nausea and hot flashes were cruel.
The week I stopped working was the week I was told that my bowel was turning cancerous and needed to have my bowel removed. So either way I would have been forced to stop working as I was told I needed 12 months off of work to recover, and then I was diagnosed with pancreatitis in 2013 which meant every other week I was in hospital for 7-10 days undergoing treatment for that, and then the desmoid tumours were diagnosed along with the thyroid cancer this year has meant that I haven't been able to return to the workforce as I am just not well enough to be considered reliable for work.
I can tell you the last 3 years have been hard financially, emotionally and physically and one thing I wished I had in place was life insurance to help me financially while I can't work, and money has been so tight and often stressful. I am just thankful my husband can work so hard to provide for us and support me while I am unable to work.
I really wished I had some sort of security in place, and it is something I hope through my mistake you will consider.
So I asked our friends over at Life Insurance Comparison to help explain how life insurance can be used while you're alive and become ill or disabled, and Sally has written a great guest post for us on this topic.
How Life Insurance Can Help If You Become Ill or Disabled
Wondering how you'll pay the bills if the main earner in the household gets ill, has an accident or dies can be a hugely stressful experience that can be avoided through life insurance. At Life Insurance Comparison, we're here to help you to navigate the often confusing world of life insurance so that you can get the right protection for your needs. We'll work with you to buy the right amount of cover and the most appropriate type of product to support your family if the worst happens.
When you first think about life insurance, what comes to mind? If your initial thought was to with death, you may be unaware of the full benefits of life insurance. Many people mistakenly believe that life insurance only comes into its own if the policyholder dies but it can actually be an invaluable form of financial support if you become seriously ill or disabled and cannot work as a result. None of us want to think about the idea that we might be unlucky enough to experience this but it pays to be prepared.
In this post, we look at the ways in which life insurance can offer peace of mind if illness or disability occurs during the lifetime of the policy.
Life Insurance and Illness
If you become ill and are unable to work because of this, the subsequent stress could make your situation worse. Even if your lack of income is only a short term proposition, you could be under severe pressure to make ends meet if you don’t have savings to fall back on to tide you over. Fortunately, life insurance can provide an income to ease financial stress.
The exact nature of this income depends on the type of life insurance product that you buy. Income Protection Insurance will provide regular monthly payments that can be anything up to 75 per cent of your usual salary, which can be used for day-to-day living expenses while you are not working due to illness or an accident, while Trauma Insurance offers a lump sum payment if you are diagnosed with one of the medical conditions that are covered by the policy.
You’ll therefore need to think carefully about the kind of life insurance protection that you would want to have in place if you were to become seriously ill or disabled. Would you prefer to have a regular income stream coming in each month that can be used regardless of the situation? Or would you rather receive a lump sum payment if you diagnosed with a serious and traumatic condition such as cancer, a heart attack or stroke?
Life Insurance and Disability
Life insurance can also help if you become disabled and cannot work. In particular, Total and Permanent Disability (TPD) cover provides a lump sum payment if you become permanently disabled and this stops you being able to work. This type of life insurance cover is usually needed if a professional has confirmed that you will never be able to work again due to a new (and not pre-existing) disability.
How Much Life Insurance to Buy?
Underinsurance is a huge problem in Australia in general, and this is definitely true for life insurance. This is because many of the Australians who do have life insurance don’t have enough cover to provide full peace of mind if the worst were to happen. You may already have some degree of life insurance through your superannuation fund but this is usually extremely basic and does not offer much protection at all. To be safe, you’ll need to have additional life insurance cover in place to fully meet your needs so that you are not caught out financially if you need to rely on the income.
With Income Protection Insurance, you’ll want to safeguard as much of your salary as you can afford (up to 75 per cent of it) so that you can still experience a good standard of living while you cannot work.
With Trauma or TPD cover, you’ll need to make sure that your lump sum payment is substantial enough to cover everything that you would want. You’ll therefore need to think about how much you would realistically need for regular outgoings and also factor in medical and rehabilitation expenses (if you don’t have health insurance that would cover some or all of these latter costs). Trauma insurance is generally the most expensive type of life insurance but it can turn out to be the most cost effective if you need to call on it.
Ideally, you should look to buy as much life insurance as you can realistically afford so that you are less likely to be underinsured. If you want the lump sum payment to be able to act as a long term source of income, this will obviously be more expensive to buy but would be very useful if you are unable work for over a year due to serious illness, an accident or temporary disability.
Thank you Sally and Life Insurance Comparison for explaining how beneficial it can be to have Life Insurance while you're alive! If you found this post helpful (or any on my blog) please feel free to leave a comment below.
Saturday, June 13 2015
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.
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
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,
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!
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.