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Feeling Ostomistic
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.

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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.

Posted by: Talya AT 11:47 pm   |  Permalink   |  0 Comments  |  Email
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:
 "WARNING: Aboriginal and Torres Strait Islander viewers are warned that the following program may contain images and voices of deceased persons.” (ABC) This source also explains the cultural signifigance and meaning behind this practice too. 

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:
Writing letters to my loved ones;
♕ Leaving behind memory boxes;
♕ Doing special things such as the photoshoot with my sisters as they wanted a letter and nice photos of us sisters together;
♕ trying to tidy up our finances so Russ can manage on his own and with ease;
♕ Planning my own funeral so that others could focus on their grief;
♕ or even in leaving gifts behind for future milestones I will have missed.

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:
I remember tears felt for my nephew's first birthday as I was surprised I was still there to see him celebrate (was 6 months since entering palliative care), but the thought of him growing up not knowing me or knowing how much he meant to me does still upset me. For his first birthday I named a star after him, for his second birthday I got a bunch of kids books and wrote a heap of heartfelt inspirational messages inside each one, that I hope will help motivate and inspire him in the years to come.

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:
- Not inviting me to something because it was easier to exclude me than to try and accommodate me;
the list could go on but I would be here for days if I listed the experiences faced, and you'd be horrified if you knew some of the truth too.

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.

Posted by: Talya AT 02:25 am   |  Permalink   |  1 Comment  |  Email
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.

Fabmewlous Dusty:

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!

Pop on over and meet 14 other ostomates who share a precious bond with their pets, click the link here.

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!

 

Posted by: Talya AT 08:22 am   |  Permalink   |  1 Comment  |  Email
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. 

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Let me start by sharing (an ironic) quote from the episode:
“Questions are good: Leads to awareness and understanding. Who knows, even acceptance.”
- Season 1, Episode 14 titled "She"

The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.

Instead, they made the idea of an ostomy as this tragedy and that it was THE worst thing to happen in life. I get that it is a show, it is made up, but it doesn't make those living with the conditions feel any better or at ease knowing "it is just a made up TV show that thinks this" when the reality is so many look down on life with an ostomy and struggle to see that a life can still be lived....

"I’d rather an ostomy in tow than a tag on my toe" - Talya Goding

I really was enjoying this show and often talked of the compassion felt in each episode, but this week I find myself as someone with an Ostomy to be disappointed in how it was perceived and quite angry too.

Maybe some more consultation from those with lived experiences could better make the show better.

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.

Ostomate and proud!
I took to twitter too to share my frustration and dissapointment, but I also wanted to write a proper post here that hopefully can show the inspiring side to ostomy life too.

 

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:
I know that for many an ostomy is an emergency and can come as a shock; I know that for many (like myself and others) they have many issues with their stomas and constant issues; I also know that It can take some a long time to adjust to ostomy life and it can be rather hard; some struggle a lot with adapting and this affects their mental, social, physical and financial health.

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!

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Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
Zoey is such an inspiration to many! She is a Pro Fitness Model with an ostomy, she has helped inspire so many others with IBD and an ostomy to do fitness and to also be a model too. She helped many, including myself, see that fitness is a reality with an ostomy. She shares videos, words of wisdom. She is stunning and beautiful and incredibly courageous to boot! Zoey has an ebook launching soon, so keep an eye out for more deets. Find her on: Instagram Facebook Twitter 

Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
In the 6 months post ostomy surgery Laura travelled 3 continents, 17 countries over a total of 10 months - all with her ostomy in tow! Laura helped me to realise that travelling with an ostomy is achievable and can happen. I know she has helped many others to see this too. Laura loves to get her bag out on her travels and below is pictured in front of the iconic Eiffel Tower! Laura had always had a dream of travelling and living abroad and her health put a halt to her plans, now she lives in London and travels every chance she gets. She shares her tips for travelling with an ostomy and living abroad on her blog and social media. Find her on: Instagram Facebook Blog

Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
Sam is an Registered Nurse (RN) from Australia who became an ostomate after living with IBD. She had surgery and 8 months later she was back in her scrubs and helping to save lives everyday! She documents life as a nurse with a stoma, including pesky bag leaks, but she continually inspires others whether it is running for a marathon or training to be a Stomal Therapy Nurse, or even helping new ostomates as they adapt to life post op. I know my STN is my rock and I couldn't have done this without her, and I know how valuable a good STN is to an ostomate, so Sam having her experience as an ostomate is really going to be such a resource and tool. Wishing you all the best as you finish your STN certification Sam x Find her on: Instagram

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!"
- Gaylyn Henderson

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:
Blake battled bowel disease for over a decade which led to him needing surgery for an ostomy. Blake became determined to get back into shape and regain his bodybuilder career and it led to him becoming a model. He has inspired ostomates around the world to get into shape and enjoy fitness, he shares tips and videos on his blog and socials. He even founded a site called OstomyReviewer which is this amazing site where you can rate and review ostomy products and see what other ostomates have said about it before you have ordered or purchased it, how genious and is such a good platform too! Blake started the hashtag #myillnessisnotyourinsult after ostomy life was insulted by some leading "news" sites and he tirelessly advocates and fights for ostomates. Blake is often quoted saying "my bag gave me a second chance" and he tries to be a positive role model for ostomates, continuing to instil hope in others. Find him on: Instagram Facebook Twitter Blog

Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
If you haven't followed Dana on insta yet, get onto it. She is so positive and beautiful, she is an amazingly talented country music singer/songwriter (I love her music) and her feed always has you feeling warm and fuzzy. Her love of life and gratitude for all things, including faith, is contaious and she is so down to earth. She got married recently to her husband Tanner and looked absolutley stunning on her wedding day. On her blog she shares some great advice on living with a stoma, how faith can help you heal and more importantly, she shares tips on how to love yourself bag and all. I actually first discovered Dana back in 2015 when I came across her online course she had for "rock the bag" where she helped you find confidence and to love yourself post ostomy surgery, I started following her online and her feed constantly leaves me feeling positive. I'm not religious but I find comfort in her words at times. Do yourself a favour and follow her, you won't be disappointed. Congrats Dana on your wedding Day too! Find her on: Instagram Facebook Blog

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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.

 

Posted by: Talya AT 11:43 pm   |  Permalink   |  0 Comments  |  Email
Friday, February 09 2018

I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.


My Interview with Krystal on Ostomyconnection.com

Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.

Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.

So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.

As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.

I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.

Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.

If you want to read the interview on OstomyConnection the link is here.

If you want to read the original interview or to read issue 2 of the ostomistic life magazine the link is here.

You can also find Krystal aka Bag Lady Mama online via:
Instagram @bagladymama
Facebook @bagladymama
Twitter @bagladymama
Or her site/blog

5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.

P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too. 

Posted by: Talya AT 11:03 am   |  Permalink   |  0 Comments  |  Email
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!

Why?

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:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

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: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

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.

Thanking you

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.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  Email
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:
#1. I have notice and #2. Providing I am feeling up for it.

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:
I'm not lazy, I am sometimes tired of having to explain and justify my pain or tiredness, but there are days if not weeks or months where I am asleep and resting. I turn my phone off on my bad days or when I have had very little sleep and need un disturbed sleep. So telling me the day before gives me notice for then being able to make sure I am up and ready if I am ready.

#2. My stoma leaks a lot:
My stoma leaks a lot, 95% of the time when I wake I am dealing with leaks. It is really stressful when woken and knowing people are outside knocking and waiting/expecting me. It is something that makes me anxious when I do realise people are waiting for me, as if I am home alone I have to try and deal with a leaking stoma whilist trying to get to the front door quickly (often I miss the postie or courier and have to drive to Coffs to get my parcel). It is also why I get upset when Palliative care would randomly rock up without telling me and then were cranky when I wasn't home to answer the door when I was, I was just in bed asleep... so when my stoma leaks it can take me time to get ready. It means needing to get dressed and cleaned up and clean my linens if needed. It is something that I can need time to be ready, and knowing someone is outside waiting for ages makes me feel more flustered.

#3. I often sleep starkers:
Because my stoma leaks a lot, it is just easier to sleep with either no clothes on or just undies and no PJ pants. Sometimes I wear a top sometimes just undies and no top... so it is less laundry to wash because guaranteed my stoma leaks often in the middle of the night or when I wake and it is hard to have to strip down while trying to do a bag change - all while magically avoiding making a mess! If it is just going to be me home it is best if I know if anyone is coming so that I can have notice and get a chance to get ready. When you surprise rock up it can be hard as my clean clothes could be in the laundry (in the dryer) and I have to try and get through the house with just a dressing gown on and hope if you're outside waiting that you don't catch my streak through the house to get my clothes.... so I need notice if you plan on coming for obvious reasons.

#4. I am often in pain and bedridden:
When Russ leaves for work of a morning he shuts and locks the door as he walks out. So sometimes if I know someone is coming to visit I would ask him to leave the door unlocked and shut. If this is a day when I am barely able to get out of bed it can be stressful knowing someone will arrive and I can't exactly get up to open the door. I was criticised last year (well, 2016 too) when I wasn't much of a host and "don't make people feel comfortable or welcome" because I can't be a host. I think it is hard for people to understand that it is painful and difficult to stand and walk let alone be a hostess. If you come and visit, please have zero expectations of what I am meant to do... don't expect me to go above and beyond to impress you. I am not being rude, you might think I am, but if you wanted a cuppa help yourself. 

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 just surprise visit me and I don't know you're coming, you very well could be having a cuppa without milk. Some days Russ will make his coffee for the day in his thermos and takes it to work, it is a guzzler for milk. So its very likely that he uses the last of his milk as he leaves for work knowing full well that he has to buy milk when he finishes work in the evening.

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:
I always will try and attend something regardless, but there are times when I am in too much pain or phsyically unable to attend. Giving me warning and time in advance of a visit gives me the chance to cancel within reason. If I had notice I could tell you ahead of time to not waste your petrol in coming up if I wasn't up for the visit, I would hate you to be disappointed with your visit or feel like I wasted your time. If you surprise visit me I can't give you the chance to avoid being disappointed with me.

#7. Our house mightn't be visitor friendly:
The entire household chores and running falls mostly on Russ' shoulders. He also works full time. He has a roster system of how he does the house, one day he does the rubbish and kitty litter (and every second day) and some days he would do the bathrooms or vacuum. If you surprise visit us, we will feel embarassed because the kitty litter might be due to be done that day or the rubbish. It can be hard when you surprise visit that I am anxious if you are judging us the entire visit and will go off and tell others about how we live, which has happened, and makes us less inclined to invite you back. 

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.

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
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 :
"while this will change your life, it will also save it."

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.


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

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.

Love,
your older and somewhat wiser self

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!

 

 

Posted by: Talya AT 06:47 am   |  Permalink   |  0 Comments  |  Email
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.


Me post shower, feeling like a freaking rockstar!

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.

Posted by: Talya AT 03:40 am   |  Permalink   |  0 Comments  |  Email
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.

amiright?


This was a snapshot of my best memories of 2017 - read my year in review post here

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:
This is something I have been gradually introducing into my life since being sick, which feels like forever, but gradually over these 5 years I have been trying to focus more on putting my own needs first and focus on me more. So in preparation of this I have been reading "The Self-Care Project" written by Jayne Hardy who is the founder and CEO of The Blurt Foundation. I love the self care subscription boxes they offer through The Blurt Foundation and was how I first learned about their company when I was researching "pick me up gifts" for issue 1 of The Ostomistic Life.

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:
I used to be a bit of a book worm back in the day, I often would be found skipping classes just to read books in the quad. I used to be able to read so quick and loved binge-reading a series. I felt so proud when my sister loved reading as much as I used to and had quite the impressive collection.

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!


Just some of the books sitting on my bedside on my "to read list" (pic from Jan last year)

#3. To say No more:
I am a people pleaser, I am notorious for putting the needs of others before myself and sacrificing myself in the process. I am struggling to recognise myself and part of the reason behind doing this self care and focussing on myself is to help me try and find or recognise myself again... so part of my self care is saying no to things that will cause me stress or anxiety or bring me misery and saying yes more to things that will bring me joy. Will see how I go, because it will be one of my biggest challenges yet.

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:
I watched the ABC series "War on Waste" (also on ABC iView) and it left me feeling sad and concerned for the world in 50 years. I have seen those dystopian movies and TV shows such as 100, Travellers, The Handmaid's Tale and the like, where the world decades or hundreds of years from now is in absolute ruin due to us humans, so watching this TV series about the impact we have on the environment definitely stops you in your tracks and makes you realise the need for change.

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 went to the snow years ago and loved skiing even though I was incredibly unco and fell over far too many times because I couldn't work out how to stop quickly enough... honestly, the stories are hilarious. It was the end of September and there was hardly any snow. But something I have always dreamed of was to see the snow, like think snow failing white Christmas.

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 still undecided on what that NEW thing is yet to be, whether it is learn a craft or skill, or more complex like learn something I have thought about for a while like learning to feel confident again, learn how to be fashionable, learn how to edit videos, learn how to podcast or learn an instrument or learn to surf. HA okay, so the latter won't happen, but you get the drift.

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:
I have said for as long as I can remember that I wanted to write a book, I often thought about writing a children's book which who knows could happen if I can manage to do well in my course. I'll see where my writing takes me.

#8. Write a blog post a week:
This suggestion actually came from my wonderful GP last year, he told me to write more often and if not daily to write weekly. I guess this will be post #1 for the year? If you have a question or topic you want covered do reach out and let me know.

#9. Write a journal:
It has been a while since I have written a daily journal, but my GP thinks writing daily could be good. But I never really do ANYTHING lately that is worth jotting down. But it is 8 days in to this year I have already failed at this, I was given a diary for Xmas but Russ doesn't know where it is. I know I haven't done anything too exciting yet, but my GP thinks it could be beneficial.

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 have spoken openly on social media and on here about my mental health issues but in case you forgot I have depression, high functioning anxiety, borderline personality disorder, self diagnosed Excoriation Disorder and I think that mostly covers it. Anyway, I have been naughty and haven't seen anyone in a while and I know I need to. I have bottled so much up that I don't know how to contain it anymore and I have complex issues I am trying to work through and it is a little overwhelming at times. I don't feel like a repeat of my breakdown in June, it took months to recover.... I just need to make time and prioritise my mental health. Russ' roster has been changing and been hard to plan ahead of time for appointments, so I am really hoping this year to try harder to prioritise this.

I guess this would come under self care and taking time for my needs too.


My swimmers kindly gifted from Yours Clothing - LOVE them

#11. Go Swimming:
I haven't been to the beach in years, I know it sounds strange since I live minutes from some of the most beautiful beaches in Australia, but it is hard when the beaches require long walks and not very accessible. It is something I miss and haven't been swimming in years, so I am hoping now that there is an accessible ramp installed at Back Creek South West Rocks that swimming could happen. I got gifted this beautiful pair of swimmers back in July that I am yet to wear swimming, so between trying to find a day where my pain is managable, where my stoma is behaving, that it lines up on a day Russ has off or that the weather was good has been tricky. Since it is school holidays everywhere is probably packed anyway, so I might wait until it is over. I don't want to spoil my first swim in years by my anxiety and fear over if I am being judged or laughed at. I am determined to make it happen - stay tuned!

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:
I have wanted to go glamping for years, Russ loves camping but with my health issues I prefer the glamping idea. For 5 years I have had this on my bucket list, every year I say "this is the year" but something always comes up or we can't afford it. There is this place not far from here that do beach tents, it is at Red Rock (one of my fave spots) so I'd like to manage a couple of days away in March for our birthdays - since I was in hospital for Russ' I really wanted to make up for it this year. So maybe this could be when I manage my much awaited swim.

#13. Have a holiday:
This could be the past 2 cues, but it has been a while since we have had a proper holiday where the one thing on our to do list is to relax. Our last proper holiday was March 2015, was just after being in hospital for months and learning of a couple of new cancer diagnosis and I booked this place in Kingcliff for a week. I have always wanted to go back, they had the most wonderful pool and it was so relaxing. I really would like to do something this year, Russ needs a holiday.

#14. Explore the Coast:
For years we have said we wanted to see more of the coast. If only Russ could legally tow a caravan a friend offered up their brand new luxe caravan and land rover anytime we wanted it. Russ is only on his green provisionals so will be another 18 months before he can drive it, but it definitely would help make our bucket listing adventures more affordable. But until then, we hope to do day trips exploring different parts of the coast such as seeing the Jacaranda festival in Grafton, visiting Yamba and Maclean, Visiting Wooli, Laurieten and Bonny Hills, go on the ferry at Port Macquarie, Visit Foster and Tuncurry, go on a picnic to Yarrahappini and so forth.

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.


Red Rock, NSW - where we had our wedding anniversary - a favourite place of mine

#15. Renew our vows:
I really wanted to do this for our 7th wedding anniversary last year, but spent the next few months in bed with pain and didn't manage to find time to do what I had hoped... I had this epic idea I wanted to do, so I do hope to do it in pieces throughout this year and reveal my big plan.

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:
It has been really hard to feel like we aren't drowning at times in our finances. Our bank is the worst, you may recall how they no longer are letting me do my own banking because I have cancer and they believe I no longer am of sound mind - all because I asked for the 1.5% less advertised rate... so because I knew it would save us money doing so they then questioned my judgement... so I am not allowed to do my own banking unless a lawyer is present. I can't afford a lawyer so I am backed into a corner and feel trapped. It has been many months of stress and worry.

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:
I have long dreamed of seeing a waterfall. We hope to get out to Dorrigo. I know there is a beautiful one in Woolgoolga but the wheelchair isn't designed for offroad 4x4.

#18. Try to get my pain under control:

I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.

☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟

I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.

My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!

Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.

To be fair, his list was most of what I do anyway which was:
1. give Russ head scratches
2. Give him foot rubs and massages
3. Run a bubble bath for Russ
4. To go fishing
5. To go camping
6. To get roof racks and go canoeing
and so on..... but I was kind of proud that he is taking initiative when it comes to his own self care and recognising what he needs to do for his own mental health too.


One of the best moments of last year, my first tattoo drawn by Jubly-Umph

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:

Posted by: Talya AT 11:23 am   |  Permalink   |  0 Comments  |  Email
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+.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

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.

To read part 1, click here:

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
I know this hopefully is common knowledge, but you'd be surprised how many times I have been at the shops and found pets or kids sitting in the car while their parents or owners shopped. Even with the windows down or leaving the car running with the air conditioning going, the car is still going to be hot.

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?
The NRMA advises: You must make a judgment call as to whether it is a life and death situation and you would need to break a window yourself and call an ambulance, or whether you should call 000 and ask for police, who will get there as urgently as they can (and will break the window themselves) and they will call an ambulance.

If the child is clearly distressed, do not wait for help. Instead, break a window and remove the child from the vehicle until help arrives. If you break a window, and the child is simply asleep and it turns out not to be an emergency, it is possible that you could be required to pay for the window.

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
Water is important for helping you to stay rehydrated, make sure you have plenty to drink. Consider taking a bottle of water to someone who is experiencing homlessness, they might not have adequate access to water, it might not be a lot but it is a nice gesuture to look out for someone who is at high risk of heat related illnesses.

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
If you're like me and have an ostomy and need to replenish lost electrolytes, make sure you have enough to get you through the weekend. I try and have a 1L bottle of sports drinks, I get the powder and mix in the water, and have a few of these made up in my fridge ready. You can consult with your Nurse or dietician over what is the best option for you to replace your lost electrolytes. Due to having no large bowel I am at risk of dehydration, which is worse in Summer and extreme heat. Salts and minerals are vital for your body's functionality.

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
This is important, especially if you struggle with body regulation, you need to find somewhere cool. Air conditioned is preferable, if your home isn't air conditioned maybe ask a neighbour or friend if you could join them, otherwise hit the shops and enjoy their air condiitioning too. If you don't have air conditioning find somewhere cool in your house and put on a fan. You could go to the library, cinema, art galleries, cafes too.

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
Fill as many bottles as possible and put in the fridge, some could be cordials or soft drinks, but limit the alcohol. Plenty of cool drinks will help keep you cool

Tip #6: Have ice packs or blocks in the freezer
Firstly, ice blocks or icypoles are a great way to keeping cool and hydrated in Summer. You could also freeze water bottles so they last cooler for longer, if you are going to the beach. Ice packs are good to keep on hand in case of first aid and if you need to aid in cooling someone down. See part 1 for how this works.

Tip #7: Keep blinds drawn
This will help keep your house cooler, even if you have air conditioning going, keeping the blinds drawn will help your system to not have to work overtime too. But if you don't have air conditioning it will still help if you have a fan too.

Tip #8: Wear light summery clothing
Avoid wearing lots of layers and wear something light and breathable, this will not only help in keeping your body cool but will aid in your body trying to regulate it's temperature. Avoid wearing dark or black coloured clothing. Clothing light in colour reflects the light better.

Tip #9: Be sun smart and sun safe
Slip, slop, slap. Sunscreen, a hat, sunnies and a shirt are not only safe ways of being out in the sun but also help in preventing melanoma. If you must be out in the sun keep out of the sun as much as possible - during a heatwave you should be minimising your sun exposure. Seek out shade.

Tip #10: Reapply sunscreen often
Even if it is overcast, you can still get burnt and when you're swimming sunscreen washes or rubs off after time, so everytime you come out of the water or as often as indicated on the bottle: reapply. Also if you do happen to get burnt, have some cooling after sun gel in the fridge to help your skin cool down, aloe vera fresh from the garden helps too.

Tip #11: Don't lie in the sun exposed
If you're planning on laying on the beach and reading a book, chances are you could fall asleep and get sun stroke. A heatwave isn't the right time to do this, seek out shelter or shade or plan your trip to the beach on a day where the weather isn't as hot.

Tip #12: in case of a blackout
It is important having items such as a torch, a battery operated fan, extra batteries, bottled water and first aid kit on hand in case of a power outage. Also, wrap medications that need to be refrigerated (such as insulin pens) in foil or place in an heat repellent container with some ice in case of power failure.

Tip #13: Open the house at night or evening if a cool change is forecast
This is self explanatory, but this might help to keep the house cool of a night or the next day if air gets circulating around, remember to draw the blinds early in the morning to keep the heat out and the cool in.

Tip #14: Pets or wildlife
Pets can be particularly vulnerable to the heat. Make sure they have shade and plenty of cool water to last the day. If you live near the bush, consider leaving a bowl or bucket of water out for any Koalas, kangaroos, dogs or cats or other animals that might want water.

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
It is important to remember that while you want to cool your body down that you aren't changing your temperature too quickly or suddenly. You could go swimming or lay in a bath if you run the cool water before the hot to cool down. You could set the sprinkler up or a water slide, brings back good memories being a kid and having a tarp and sprinkler on the yard and having a good old time. Just remember to be sun smart too!

Tip #16: Check in on those at risk
Keep a close eye on those most at risk, like the sick, the elderly and the young (a full list of vulnerable at risk perspns is in part 1). Do this at an arranged time at least twice a day. The heat affects everyone differently and adversely, be sure to make sure they have plenty to eat.

Tip #17: Watermelon
Would it be an Aussie summer without watermelon? I love watermelon, it is full of water plus it is a good source of electrolytes too! Make it fun by using cookie cutters to make fun shapes too. If you get sick of water, maybe have some watermelon to help replenish you. Your body will thank you too, it is oozing with benefits too. 

Tip #18: Foods
Enjoy delicious salads and cold meats for dinner, while a hot meal is delicious, it will only make you sweat and feel hot cooking away in the kitchen. But with the heatwave foods like strawberries, cucumbers, watermelons, celery, tomatoes and broccoli and lettuce contain water, which can be benefitial towards your water intake.

Tip #19: Wearing a stoma cover
I get rashes on my stomach under where my bag sits against my skin, especially when it is hot. I found last year if I wore an ostomy pouch bag cover it helped to relieve the rash as it wasn't plastic on my skin and it worked as a barrier between my skin and bag. If you find you get rashes too maybe speak to your nurse as she might have some bag covers or be able to point you in the right direction to where online you can find them. I had a friend make me some. Theres heaps of options if you google too.


My cover a friend made for me

Tip #20: Mashmallows
I find when I am dehydrated or in Summer my output is more watery. It is hard sometimes to keep my hydration up when this happens, but I have some marshmallows and immodium to help thicken my output. Sometimes a watery output is a sign of a blockage too, be mindful of this as you may need medical attention.

☟ ☟ ☟ ☟ ☟ ☟

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:
- On how medication/heat affects you:
- Heat related illnesses and what to do: NSW health
- SES heatwave fact sheet
- SES heatwave tips
- ABC heatwave tips
- Know your risk
- Heat and children: NSW health
- Cancer Council Australia slip slop slap seek
- Just 6 minutes pet first aid
- NRMA children in a hot car

If you have another tip, be sure to let me know in the comments below. To read part 1, click here

Posted by: Talya AT 10:15 am   |  Permalink   |  0 Comments  |  Email
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.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

..... 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:
The homeless
The elderly
Children
Pregnant women or breastfeeding women
Those who are sick, including those who have health conditions such as Diabetes, lung disease, breathing issues, asthma, heart disease, kidney disease, high blood pressure or who take medications that make them vulnerable
☀ Those with conditions that affect sweating
☀ People with cancer
Those with an ostomy
Those who work outdoors or in factories or hot working environments
Athletes or people who exercise vigorously in the heat
Those who are obese, overweight or aren't very mobile
☀ Those with an acute illness such as an infection, fever, or gastroenteritis (diarrhoea and/or vomiting)
☀ Those who live alone or don't have much social support
☀ Those who enjoy the outdoors including gardening
☀ Those with Mental health issues or dementia
☀ Those who drink alcohol or use drugs
Not to forget our furry friends too!

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?
If you're like me and have an ostomy (or have had bowel surgeries before) you could be at a higher risk of dehydration and feeling vulnerable to heat related illnesses. This is to do with the loss of bowel and without your large bowel your body might not be reabsorbing essential vitamins and minerals such as electrolytes. This is why doctors and stoma nurses suggest replenishing your electolytes to avoid dehydration. So it is essential at the best of times to monitor and replenish your minerals and stay hydrated.

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?
According to NSW health, when the weather is very hot, the body has to work very hard and produce a lot of sweat to keep itself cool. During extreme heatwaves, our bodies sweat a lot, which can lead to dehydration if we aren't careful. Mild to moderate dehydration makes the heart work faster and leads to reduced fluid available for sweating.

NSW health says the symptoms/signs of dehydration to look out for are:
Dizziness and tiredness
Irritability
Thirst
Bright or dark yellow urine
Loss of appetite
Fainting

So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
☀ Drink plenty of water or diluted fruit juice (1 part juice in 4 parts water) and avoid tea, coffee or alcohol
☀ Move somewhere cool, ideally air-conditioned
☀ If possible use a spray bottle with water to cool yourself down
☀ If you start to feel unwell, seek medical advice

So what are heat cramps and what are the signs to look out for?
According to NSW health, "Heat cramps usually affect people who sweat a lot during strenuous activity (e.g. sport or gardening). The sweating causes the body to lose salt and water. The low salt levels in the muscles may be the cause of heat cramps and they can be a symptom of heat exhaustion".

NSW health says the symptoms/signs to look out for are:
 Muscle Pains
Muscle Spasms

So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice: 
☀ Stop all activity and lie in a cool space, legs slightly raised
☀ Drink water or diluted fruit juice (1 part juice in 4 parts water)
☀ Have a cool shower or bath
☀ Massage your limbs to ease spasms, apply cool packs
☀ Do not return to strenuous activity for a few hours after the cramps subside (exertion may lead to heat exhaustion/heat stroke)
☀ Seek medical advice if there is no improvement

So what is heat exhaustion and what are the signs to look out for?
According to NSW health, "Heat exhaustion is the body’s response to an excessive loss of water and salt contained in sweat. If heat exhaustion is not treated, it can turn into heat stroke."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Pale skin
☀ Fast and weak pulse rate
☀ Shallow and fast breathing
☀ Muscle weakness or cramps
☀ Tiredness and dizziness
☀ Headache
☀ Nausea or vomiting
☀ Fainting

What to do -FIRST AID- according to NSW health:
 Move to a cool place, ideally air-conditioned and lie down
☀ Remove excess clothing
☀ Take small sips of cool fluids
☀ Take a cool shower, bath or sponge bath
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ If symptoms worsen or if there is no improvement, seek urgent medical advice and call an ambulance if necessary

So what is heat stroke and what are the signs to look out for?
According to NSW health, "Heat stroke is a life-threatening emergency and occurs when the body temperature rises above 40.5°C. Immediate first aid is very important, aim to lower body temperature as quickly as possible."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Sudden rise in body temperature
☀ Red, hot and dry skin (sweating has stopped)
☀ Dry swollen tongue
☀ Rapid pulse
☀ Rapid shallow breathing
☀ Intense thirst
☀ Headache
☀ Nausea or vomiting
☀ Dizziness or confusion
☀ Poor coordination or slurred speech
☀ Aggressive or bizarre behaviour
☀ Loss of consciousness, seizures or coma

What to do -FIRST AID- according to NSW health:
 Immediately call 000 and ask for an ambulance
☀ Get the person into the shade, lay them down, and keep them as still as possible
☀ Give small sips of cool fluids if conscious and able to drink
☀ Bring their temperature down using any method available (sponging with cool water, cool shower, spraying with cool water from a garden hose or soaking clothes with cool water)
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ Do not give aspirin or paracetamol; they do not help and may be harmful
☀ If unconscious, lay the person on their side (recovery position) and check they can breathe properly
☀ Perform CPR if needed

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.

To read Part 2, click here

 

Posted by: Talya AT 08:15 am   |  Permalink   |  0 Comments  |  Email
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…

Fear.

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:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 02:12 am   |  Permalink   |  2 Comments  |  Email
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


One of the decorated tables, the venue loaned me their candelabras for the event use

#1. Give yourself plenty of time to organise it
I only decided less than 4 weeks before the event took place that I was going to organise it. It was rather stressful trying to secure a venue, organise ticket sales, promote the event, organise donations and the works. If I were to host another event I would start organising at least 4-6 months ahead of time to allow for plenty of publicity and support to be engaged.

#2. Have a committee or team to help you
If it weren't for a couple of friends stepping forward to help me, I know my event wouldn't of been the same. I was in and out of being in hospital (one of the downfalls of being chronically sick) and was still trying to organise the fundraiser. One friend had a lot of connections within the community and helped to establish a lot of the donations and support from local businesses as well as organising a stall at the local market to help sell more tickets, and my other friend helped me to also arrange donations from businesses but also was a life saver on the day helping me to set up as well as selling raffle tickets for me on the day.

If I were to do an event again I would seek out those who want to help and delegate to them a job/task they can do and have regular meetings just so everyone can touch base with how they are going and hear how the event is coming along so far.

#3. Always have an authority to fundraise from the charity
This one is a given, and while I had the authority to fundraise from the start of organising the event, it is something I wanted to add here as it is crucial to your event. Not only does the authority to fundraise add legitimacy to your event, but it also shows that you are authorised to act on behalf of the charity to collect goods and is a legal requirement.

I gave a copy to each of my friends that helped me to arrange donations as well as having a copy available when I did the market stall to promote the event.


The lolly buffet.. was a HUGE hit

#4. Make sure your phone is charged
On the day when I left the venue an hour before it started, my phone was fully charged. Then half way through the event my phone died and I had no charger and it made life rather difficult as I had things stored on my phone that was imperitive to the afternoon running smoothly! I wasn't expecting so many people to get lost and ring me requiring directions. Next time I will bring a phone charger as back up, but importantly would have everything I need in a hard copy.

#5. Get an MC
While I am no public speaker and I felt rather intimitated standing up being the MC for the event, it was also rather difficult to host the event be the MC as well as doing the errands I needed to do... all at the same time! I think next time I would enlist the help of someone to specifically be the MC to help the event run smoothly and allow me to focus my attention on the running of the event.

#6. Time management
I didn't anticipate how fast time flies by when you're having fun, and the event ended up going over by an additional 30-45 minutes! A big part of it was my phone dying and having to think on my feet what I could do to replace the lost technology, and also trying to MC as well as running the event. But even time management leading up to the event is important as I was up all hours the night before finalising things and all the morning in the lead up to the event too, which made me run late and not on time. So time management is a must!

#7. Find monetary sponsors for the event
If there is a business that is unable to donate goods towards a raffle or auction item, ask if they might like to sponsor the event with money to help you cover running costs. I didn't think of this until after the event and ended up using $500 of my own money to ensure the event ran smoothly. This was things like the photo booth props and backdrop, the lolly buffet, the jars for the lolly buffet, the bags for the goody bags, printing of the tickets, printing of signage/shirts/flyers to promote the event, decorations for the event and more!

#8. Don't forget to thank your sponsors or supporters
I wanted to do something fun but simple to show my support to those who helped out the event, and I did this by designing a postcard that said "thanks a latte for your support" and it was an image of a takeaway coffee cup with a cuppacino sticking out top, with a message on the reverse saying how appreciative I was of their donation or support and let them know that $1200 was raised. These were handed out in person where possible as well as posted out.

 
These are my cup of thanks I gifted to the sponsors

#9. Get the support of local media behind your event
If you plan early enough you might be able to get a story run in your local paper to help boost ticket sales. I wished I had of gotten a story in the paper but I was lucky to get an editorial mention in a local magazine as well as in the upcoming events section of the local newspaper. But if your event has a special meaning behind you organising it than by all means sell your why behind the event in hopes of getting media attention. My "why" was because of being a Canteen member myself I know firsthand the benefits of the programs and rec days and counselling provided, canteen have helped me so much on my own journey I only wanted to try and give back.


The media editorial mention

#10. To save costs do as much DIY as possible, trust me it can still look awesome!
I wanted to add my own touch on the event so I purchased plain calico drawstring bags (like santa sacks) and with the enlisted help of my teen sisters we painted stenciled images (I also cut and designed myself) onto each bag. These turned out pretty cool and were fun to do.

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.

 

 
Posted by: Talya AT 01:18 am   |  Permalink   |  0 Comments  |  Email
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:
#1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy.
Read: my tips on avoiding a watery output

#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.

#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!

Other tips to help make your bag more stickier can be read here!

#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!

#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.

#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!

#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.

When out and about:
#8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...

#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.

#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or  it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.

#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.

Stoma kit advice:
#12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.

#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!

#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!

Storing your supplies at home:
#15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.

#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks. 

Mental preparedness and a stoma:
#17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.

#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!

#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.

#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck. 

[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!

Posted by: Talya AT 09:32 pm   |  Permalink   |  0 Comments  |  Email
Saturday, September 26 2015

NB: This post contains raw emotions

I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.

You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.

It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.

My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.

So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.

It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.

So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.

My oncologist presented three options to me, these were:
1. I somehow come up with the money for treatment (and was considering taking my friend's up on their offer of a fundraiser)
2. That my oncologist could apply and advocate on my behalf to the chemo manufacturer for compassionate grounds and see if they would approve all or part of the drug to be subsidised, or
3. That we try a more toxic and lengthy chemo that would require WEEKLY rounds of chemo over 52 weeks

By this point it was a Thursday and I was told that I had until Monday to make my decision.

After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.

...........

Then .......

I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!

I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!

Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.

While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.

My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.

... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?

...CLICK....       ......CLICK.......      ......CLICK......

Maybe it only works if you're wearing glittery red heels?

Bugger!

P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..

I entered the Heritage banking savvy blog competition earlier this month, in the hopes of trying to win a share of $11k to help alleviate some of the financial stress I have had recently, and needing your help!

Please click here to vote for Feeling Ostomistic, and be sure to click the confirmation email they send you (otherwise it won't count) and please ask your friends too, I need all the help I can get to win most voted, and if I indeed won it would mean so much.

 
Posted by: Talya AT 07:08 am   |  Permalink   |  0 Comments  |  Email
Friday, September 04 2015

Recently, I was filling in one of those online question surveys that was for a cosmetic surgery company (I really wanted to win the cash prize) and while there were the usual questions about if you have considered cosmetic surgery before, there were also questions about your self esteem and self worth.

One question that stumped me, was "if there was one thing you could change about yourself, what would it be and why?"... and the answer may surprise you, I know it surprised me! 
                                                                                                        

I have never been someone who has considered undergoing cosmetic surgery in order to change how I feel about myself, and while I don't judge those who do, I just feel if you're unhappy with who you are now that it might not necessarily change after you've spent thousands on surgeries... it might make you feel worse if it didn't have the desired effect.

But mostly, I have already had so many surgeries and medical procedures because of the cards I've been dealt with that personally, I just don't want to put my body under the knife if it isn't needed. I have wanted a boob reduction, but that is mostly because my boobs are like a double J or something (no exaggeration) and it gets harder and harder to find bras and is so uncomfortable... but that isn't the one thing I would change.

I gave this answer some serious thought, and I thought about all of my physical "flaws" and imperfections and which one I would change.. I thought about my boobs and while they are huge and heavy they keep me warm (I do get cold very easily)... I thought about my eyes which are so wonky that my husband never knows if I am looking at him or around him (and I have to tilt my head slightly in pictures so you don't notice one eye is bigger than the other)...

My endometriosis crossed my mind, and I felt the all too familiar pains that it (like my FAP) has taken a lot from me... I thought about if I didn't have my endometriosis if I would have had a family by now and if I would make a good mum, to imagining a life where each month I'm not crippled with pain from the endo... and I even imagined what it would be like to have sex and ACTUALLY enjoy it... as opposed to how it has been for me the entire time I have been sexually active.. it not only is extremely painful during intercourse but afterwards it feels like there are thousands of knives stabbing at my insides (so you can imagine how hard it can be for your husband to know that while it brings him pleasure it is torture for you to endure... and then he can't help but feel bad about it... then you feel bad for making him feel bad... it is a horrible cycle).

OR is the one thing I would change about myself, my desmoid tumours? I am in constant pain everyday and finding it harder to enjoy things as I am just so exhausted from being in pain and worrying about my tumours. I am scared of what will happen if these tumours don't respond to chemotherapy this month and what this means for me... My kidneys are starting to go into renal damage, my tumours are pressing on my spine/stomach and sciatic nerve, and then there are two tumours which are close to strangling my small bowel and I haven't any large bowel (if my small bowel dies I might too).

OR would I want to change my weight because apparantly if you're overweight you can't be happy within yourself... while I am trying to lose weight it wouldn't be the one thing I changed about myself.

I thought about all of my scars that I have from my various surgeries and how they make me feel... and they mostly make me feel empowered like I am a tough bitch and it is almost somehow like proof of that time that I had to face an adversity but before I could get through it I had to first climb the huge mountain that was blocking me from it.... each of my scar bears a story to be told... and some of my scars show a sign of the battle faced.

Like the scar under my chin, which I got on the last day of Kindergarten in 1996 when I was so excited for losing my first tooth the night before. I had gotten $10 (the tooth fairy was rather generous) and I was skipping along not noticing the water overflow from the bubblers.. when... spalt! My head greeted the concrete and was taken to hospital to get stictches.. I was such a brave girl I got 6 stitches, a story to tell ANNND I got to choose a toy as a 'what a brave girl you were' gift...

Or the scar that runs from just under my breasts to just above my hoo-ha.. a daily reminder of just how lucky I was to have my bowel cancer detected early and underwent a total colectomy.. a scar that while it is huge and bumpy (and growing tumours attached to it) that it is a HUGE part of who I have become and a testament of how far I have come in the last 2 years...

...Which brings me to my ileostomy.

While some might assume that I might loathe my ileostomy everyday (albeit some days it gives me the shits), my ileostomy is something I can't imagine living without, and am so appreciative for it stands for. Prior to my total colectomy, trips to the toilet were agonising and often I spent hours on end just sitting in the bathroom in a lot of pain and often house bound... leaving the house meant that my trips needed to be carefully planned around where the nearest toilets would be, or avoiding eating foods for the horrific, painful and explosive events that were to follow.

The thing I LOVE the most about my ileostomy is that it had given me my life back and a quality of life I haven't had in about 10 years or so.. it meant I could now eat and enjoy foods without being in agony.. it also meant reducing one of my many cancer risks.

So if my ileostomy ISN'T the one thing I would change about myself, then what must it be?

Simply put, I would like to change the expectations, standard and pressures I put on myself because I need to remember that I'm not a superhero and I AM doing the best that I can... I need to give myself a break and be kinder to myself.

Something to remember...

If you could change one thing about yourself, what would it be?

 
Posted by: Talya AT 09:40 pm   |  Permalink   |  1 Comment  |  Email
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:
1. it sounded more positive than saying bucket list
and
2. it would be a list of things I want to do, that would truly make me happy within myself.

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.


So it helps me to have a list of things that I want to do, that will make me happy but also offer my life more meaning. 
My 5 reasons for having a happy list as opposed to a bucket list is:

#1. Happiness
It was a no brainer that happiness be one of my reasons for wanting to have a happy list, as the word happy was in the title of it. Now, I'm not saying I'm not happy at the moment because I am but I want to be more happy.

For me a big part of my happiness has always been results driven and I am more happier when I feel like I have accomplished something, which brings me to my next point.

#2. Sense of accomplishment and fulfilment (purpose/direction)
My husband always seems to be getting cranky at my when I mention how I feel like I haven't accomplished much and want to have more of a purpose or direction of where my life is headed. The comparison thief plays a big part of this, but no matter what I do or try to do I still feel that I need to do more and often meaning bigger things.

And this has only gotten worse over the last year as there is still so much that I want to see and do and I don't know how to achieve it all. I want to die knowing that I made the most out of every day and I want others to see me as this amazing and successful person as opposed to "that girl that was really sick".

I want to be known as more than what my illness defines me as, as I am so much more than that girl that's really sick. But I also don't want my family or friends to say I was a lousy person because sometimes I was too unwell to make it to social events.

#3. Is more empowering and motivating
I find having a happy list helps me to feel more positive and optimistic about my future plans, as opposed to being depressed at the thought that I want to do things because I could die.

For me it is more empowering to see it as a positive of things I have dreamed of, and motivating to help me want to do it. I find other's are more accepting of my happy list of things to see and do as opposed to it being my bucket list.. which brings me to #4.

#4. Offers inclusion of others
Through being more positive about things I want to do and especially things that involve others (like my family and friends), I find they are wanting to join in and get excited about the activity or goal at hand, as opposed to being depressed that I am only wanting to do these things as I might die.

I also find that through having a happy list and being more positively about things that I hope this helps my family to remember the times shared and make memories with me and link these memories with happiness and fulfilment rather than sadness and loss.

#5. Works as a distraction
If I said it was easy knowing you have a chronic illness that can kill you is easy, I would be telling a major fib... and that isn't what my blog is about! Some days it can be extremely hard when I have new progression or diagnosis' or travelling the 16 hour round trip to see specialists in Sydney. Some days it can be too much and I easily feel overwhelmed, and not wanting to get out of bed to face the world.

But I find that my happy list serves as a distraction tool, and while I don't think I can ever completely forget the reality I am faced with every day, I can use my energy to focus more on the things that are important to me and that I want to see/do... and for me keeping busy is the ultimate distraction and one of the many coping mechanism I have.

Things on my happy list include (in no particular order):
☐ Being tumour free
Have confidence to be the real me and show others who I am
☐ Finishing a counselling course
Making a difference to someone's life
☐ Writing a book and telling my story
☐ Come up with a kick-ass start up idea
Win an award
☑ Have my product in a national newspaper
​☐ Travel around Australia
Have my own house
☐ Have a Japanese garden where I can escape my reality
☑ Get a kitten preferably a Ragdoll
☐ Have an office where I can be inspired to write and create
☑ Go on an all expenses paid business trip for my blogging
Do motivational speaking
☐ Be an entrepreneur and make at least $100k in one year
☐ Become a successful blogger, so successful and influential that I would be given a car (if not free, at a huge discount)
To have a family and my husband to have a child of his own 
☑ Have a celebrity receive a product you made (Ellen received one of my Santa Keys last year!!)
☐ Being there for my siblings when they need me
☐ Reaching 1 million views on my Made With Love-Cards and Crafts blog (currently at 390k)
☐ Reaching 500k views on Feeling Ostomistic (currently at 285k)
☐ Have my own magazine column
Start an online magazine
☐ Start a Not For Profit
☐ Do something newsworthy
☐ Lose a lot of weight, and be healthy enough to start exercising
☐ Become rich enough to have someone cook for me and drive me around
☐ Finish a university degree
☐ Go on a cruise
☐ Travel the Great Ocean Road (Melbourne- Adelaide)
☐ Travel to Kangaroo Island
☐ Vist Tasmania
☐ Visit the Pink lake in WA
☐ See a sunset from the West Coast
☐ Visit Coober Pedy

☐ Learn photography
☐ Meet Ellen Degeneres
☐ Have my own TV show making crafts... be the next Martha Stewart (without being in prison)
☐ Write for a big blog

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.

 
Posted by: Talya AT 05:50 am   |  Permalink   |  1 Comment  |  Email
Monday, August 24 2015

I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.


My most recent MRI scan showing my brain (yes I do have one) and the cysts

So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.

What to expect when you need an MRI scan
& how to prepare for one in 10 easy steps!

What is an MRI machine?
MRI stands for Magnetic Resonance Imaging, and according to Better Health Channel it is a scan used for diagnostic imaging that uses a magnetic field and radio waves to help view what is going on inside your body, but is more commonly used to look at soft tissues (such as organs, and muscles) that don't show up on an X-ray.

An MRI also takes high resolution images of soft tissues and the picture is more clearer than a CT or X-ray.

How does the proceedure work?
You will be asked to lay on the scanning bed, which moves and slides you into the MRI tunnell. Sometimes (depending on what part of the body is being scanned) they will strap down or put a cage around the area so you don't move that part of your body, reason being if you move at all the images become blurry and you may be asked to re-do your scan. When I had my brain MRI they put this cage/mask over my head and secured it to the table so I couldn't move.

Some scans can take up to an hour to complete, and the tunnel you slide into is very small and it is normal to feel a bit claustraphobic as well, but there is an intercom inside the tunnel and you're given a button to press if you need to speak to the imaging technician.

The machine is also very loud (can be compared to that of a jackhammer), so you may be given ear plugs or ear muffs to wear. Some machines also have headphones that play music.

How much does a scan cost?
As the MRI is a specialised pieces of equipment it is also very expensive to run. Depending on the reason for the scan or where you're getting the scan done at can influence the price of the scan. Medicare (is the system we have here in Australia) bulk bills in some cases, but most of the time there could be an out of pocket expense. But it is best to ask when making your appointment what costs will be involved. One MRI I had in 2009 cost $685, so it is best to check up front.

Some places may also allow you to pay the gap and charge the rest to medicare, but as I mentioned before it is best to check with medicare and the imaging place what costs will be involved.

Can anyone have an MRI?
While most people can have an MRI, it is always best to check with your doctor or the radiologist if you have any concerns. While it is considered a safe procedure, some people may not be able to have the scan if they have a pacemaker or any implant, any metal in their body (that can't be removed) or people who are pregnant. It is always best to check with your doctor though if you have any concerns.

How to prepare for an MRI in 10 steps:
#1. You will be asked to not have anything to eat or drink for at least 4-5 hours BEFORE the scan, but this can vary depending on the part of the body being scanned or the time of day. It is important that you follow the fasting guidelines to ensure the best result of your scan.
#2. Allow at least an hour for the scan, and allow for additional time involved if they are running behind schedule or if you have paperwork you need to fill out.
#3. Remove all piercings and metal from your body, if you have any internal implants or metal objects it is best to tell someone immediately BEFORE having your scan.
#4. You may be asked to remove all clothing and put on a hospital gown, this is incase there is any metal on your clothing such as your bra, studs on your jean pockets or a zipper etc.
NB: Wear comfortable loose fitting clothing that doesn't have any metal to avoid having to strip down into a hospital gown, but not all practices will let you wear your own clothing either, so always ask. But I always wear tracksuit pants and a loose t-shirt when I have any scans.
#5. Turn your mobile off or to aeroplane mode before your scan
#6. If you find yourself feeling claustraphobic in confined spaces, it is best to tell someone before your scan. They can sometimes offer a sedative or anti-anxiety medication to help you relax. Otherwise if you know how to meditate and if it helps relieve your anxiety you can practice that.
#7. If you have an iPod or phone with music on it they may be able to play this for you and you can hear it through your headphones. The machine can be really loud with a lot of banging and clicks (sounds like a jackhammer).
#8. If you don't wish to listen to music and want to try to meditate or have a nap bring a set of ear plugs.
#9. Pack some panadol if you're prone to headaches which are brought on by loud noises to offer some relief after the scan (consult with your doctor first if panadol is right for you)
#10. It can be quite cold in the scan room, so bring a pair of socks to wear on your feet to help keep you warm. You may be offered a blanket too.

ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.

These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).

As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.

You may also like the following topics:
* PET scan and what is involved
* CT scan and what is involved
* Thyroid biopsy and what to expect
* Breast Mammogram, biopsies and what to expect
 

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).

 
Posted by: Talya AT 06:48 am   |  Permalink   |  0 Comments  |  Email
Saturday, July 12 2014

There are many disabling and debilitating health conditions that are considered 'Invisible' illnesses.
Now don't take the word 'invisible' as meaning it doesn't exist.
Because they do... Trust me.

But an 'iNVISIBLE' illness is referred to an illness that you can't see with the naked eye,
most often refers to illnesses and diseases that are going on inside of your body.

SOME invisible illnesses are: 
*CANCER *ANXIETY *DEPRESSION *PTSD *CHRON'S/UC *EPILEPSY *PANCREATITIS
*ENDOMETRIOSIS *IBD *HEART DISEASE *RENAL FAILURE *ARTHRITIS *MS *MUSCULAR DYSTROPHY
*AUTISM *MIGRAINES *FIBROMYALGIA and the list goes on!

You would be surprised the amount of judgemental things I hear daily from people.
Now it isn't just STRANGERS that say this, it is FAMILY/FRIENDS too!

10 THINGS AVOID SAYING TO SOMEONE WITH AN INVISIBLE ILLNESS

​1. "But you don't look sick!"....
You tell me that I don't look sick, yet get horrible offended when I get upset at you. When you have been dealing with sickness for a while you tend to get better at hiding that you are sick... By hiding I mean putting on a brave face and smiling and pretending everything is okay.

But it is also important to keep in mind that while i don't look sick on the outside, internally I could be in agony or discomfort- quite often feels like there are hundreds of knives stabbing me internally.

2. "Must be good not to work!"....
You see, just because I currently don't work it isn't out of a choice or because I am lazy. I am far from it. I am a real honest and hardworking person who would love nothing more to be out working again. I don't currently work because a) my doctor's haven't cleared me to return to working, or b) I don't think it is fair that if I am in hospital for lengthy stays (as I often am) that it would be unjust that I be a burden on my colleagues and expect them to cover my shifts when I am sick.  

I hate that I am having to expect my husband to work so hard and that the medical bills and other expenses are piling up. I really feel bad enough about my situation without you making me feel worse. If I COULD work right now I would in a heartbeat, but most employers aren't empathetic or understanding when it comes to employees being sick- trust me!

3. "Maybe it is all in your head"....
It is funny, that although I am often seeing my Doctors or specialists (sometimes weekly) that people still think they can tell me that 'it is all in my head', despite the fact that there is factual proof that this isn't so.... I don't have an illness where I imagine a sickness or imagine that it is debilitating- I live it everyday..... Everyday I am faced with the reality of what living with these diseases has impacted on my life, my well-being, but also how I can manage day-to-day activities.

.....Now on the topic of what is in my head... I know there is certainly a brain up there, as I have seen my brain (along with millions of Australian's) when my brain surgeries were filmed on the RPA tv show.

4. "Surely it isn't that bad"....
I have had several people tell me that "surely it isn't that bad". If it wasn't that bad would I have had to have my entire colon removed at 22, would I have been put through a medically induced menopause at 21? Now I know that some think that Doctors want you to see them or have surgeries as they get rich off of sick people, but I genuinely believe my specialists and have entire trust in their care of me, that they have my best intentions at heart not their own.

Also its not an exaggeration when I say that endometriosis is a bitch! When I get my monthly visitor, guaranteed I will be in bed for days as the pain is excruciating, the nausea and vomiting is debilitating and the bleeding is so heavy that on top of my really low iron levels that it makes me so much more tired.  It also isn't an exaggeration when my Doctors are considering a full hysterectomy due to the pain and complications from my endometriosis.

5. "There are people worse off then you"....
I know there are people with much worse and debilitating conditions then mine, but saying to me that because I am feeling upset and down about everything that was going on or if I need to talk to someone about what I am going through doesn't mean that what I am going through isn't valid enough and that I don't deserve to sometimes have a bit of a down day/week... because you know what ? I do deserve to sometimes be upset because I can't always be strong, I am human, I am trying to be strong, but importantly I don't always have my shit together!

6. "If you get more exercise and lose more weight"....
I know that I am fat/overweight/obese whatever you want to call me, but I am okay with it. Not because I am lazy and don't want to exercise, but because sometimes it is really hard! When I am feeling up to exercising on days that I am feeling more 'alive' I attend a swimming/aqua aerobics class which I love! But  there are many factors that make exercising hard for me whether it be the fact that my joints since the menopause ache and my bones hurt, or that exercise induces the stabbing feeling in my stomach. I know you are reading this thinking "excuses, excuses" but I bet you didn't realise that every night I eat a chicken and salad for dinner or that I never always was the size that I am.

Before I had my brain surgery I was a normal size 14/16 and I was happy, I know I wasn't stick thin but I was happy with my curves and didn't let that define me. I spent 3 months in hospital having multiple brain surgeries with the last 2 months fighting a dealy MRSA infection that was on my brain and throughout my blood. I could have died! The only way they could fight the infection was to pump me through with high doses of steroids used to fight certain cancers which little did I know caused significant weight gain! I was discharged from hospital 40kg heavier. Can you imagine the shock when all the clothes in my suitcase were some gorgeous tight fitting skinny jeans and tops that no longer fitted. If it wasn't hard enough almost dying I had to adapt to how people were treating me.

With every new health obstacle it gets harder and harder to lose weight as the next is more debilitating then the last. But please understand I am trying to do what I can when I can. I am sure if you felt the pain of hundreds of knives stabbing your stomach you wouldn't be exercising either!

7. "Change your diet"....
If only it was as easy to just change my diet and all my health issues just vanished! Instead I would need to change my DNA as that is where my problems lie is that it is genetics that are causing the FAP. Every night I have a chicken salad for dinner and have for the last 3 years. So it isn't a matter of changing my diet and every issue will magically disappear! 

8. "You're just depressed you need to get out more!"....
As much as I hate to tell you, the reason for me being down sometimes or depressed that it has nothing to do with needing to get out more. Have you ever thought that the reason I could be feeling depressed might be that I have had an absoloutely horrible day, or I just might not be coping on that particular day?

But you also don't realise that I suffer from social anxiety that it is hard for me to want to be social or be around other people. But please don't make me feel like being I can't be upset when I don't feel I am coping.

9. "Aren't you feeling better yet?"....
If I was feeling better, wouldn't I know? Sometimes it isn't a matter of just clicking my fingers and everything will be okay. Unfortunately, when I am getting over one health issue another pops up. But what most people don't understand is that most of my conditions are chronic meaning ongoing, and as much as I wish things would get better or that I would get better it isn't reality. It is what it is and there isn't much more I can do except dealing and treating each issue and living one day at a time!

10. "You are just wanting attention/sympathy!"
Time and time again I hear people say that they feel that I am just wanting sympathy or attention... I don't want pity, sympathy or attention! I am open and tell people about what is going on so that they stop asking questions or gossip, or simply because I want to talk about things and to get them off my chest. Having an extensive illness is quite a burden most days and at times I just need someone to chat too. But I also want to help raise awareness of the health issues. If I can tell someone about what is going on with me and my experiences, maybe just maybe they will meet someone one day who too will need some help or advice.

So please think carefully next time you speak to someone living with an invisible illness.

I know a lot of the time people do generally mean well, but there are often times where what you are saying can be quite upsetting and be damaging rather than actually helping. My intention for this post wasn't to offend or upset anyone, but more to raise awareness of how hurtful words can be and to be mindful next time you think you heard of the cure for cancer and that I should go and try it... if in doubt of what to say the more respectful thing can be silence.

 
Posted by: talya AT 12:57 am   |  Permalink   |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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