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Feeling Ostomistic
Thursday, October 04 2018

Trigger warning: Talks of mental health, vulnerability

You: Hi!

            Me: Hi.

You: How are you?

            Me: Fine.

You: Ok. What's up for today?

            Me: ...

- - - - - - - - - - - - - - - - - - -

I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties? 

There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.

You: Hi!

               Me: Hi.

Y: How are you?

               Me: Fine.

Y: Hmm... Do you want to talk?

               Me: Umm...

- - - - - - - - - - - - - - - - - - - 
This is when a life can change, your life, and it's totally in your control.

Hi everyone this is Russell, the Ostomistic Husband.

Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!

This was hard, but the hardest part of the day came next. 

Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.

The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in. 

That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me. 

I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.

The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward"

I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me. 

Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat

So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.

What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too. 

Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.

So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else. 

Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.

I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.

Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.

Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.

The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.

How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.

If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.

I know there isn’t much support for the men and the carers but lets be in that change tonight.

It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.

Please don’t forget you’re not alone, I am you, I see you, I feel you.

About the Author:

Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. 

 

Posted by: The Ostomistic Husband AT 07:46 am   |  Permalink   |  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
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, 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
Saturday, November 11 2017

Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.

I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.

I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.

This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.

As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom. 

Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.

I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.

So I have a wheelchair and I am not ashamed of it.

My wheelchair has given my life and ability to enjoy and love life back.

But people, even family, recently said that they thought I had a wheelchair because I am lazy.

Yes I am overweight, but that isn't why I need a wheelchair.

I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.

But hey I am just lazy arent I?

I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.

But not all disabilities are visible.

AND a disability isn't just someone using a wheelchair.

If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.

You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.

So before you think you HAVE to say something, remember the acronym THINK:
T - Is it true?
H - Is it hurtful?
I - Is it inspiring?
N - Is it Necessary?
K - Is it Kind?

It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.

In your actions just stop and think.... is this necessary? What will it achieve?

But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?

He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.

Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.

One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes. 

Next time you want to shame someone, stop and think first.

If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.

There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.

The world needs more love and they say if we want to create change to start at home first.

Posted by: Talya AT 07:20 pm   |  Permalink   |  0 Comments  |  Email
Friday, October 27 2017

In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!

Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.

We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.

This isn't the first issue with the bank this year.

They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.

THEN....☟ ☟ ☟ ☟

We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.

The bank came back and declined us (without talking to us about it) based on the reason that I am terminal with cancer and that they wouldn't do it as my husband could sell the house after I have died... but IF THEY HAD of bothered consulting WITH US to ask if this would be the best outcome, they would have known that Russ has no intention to sell and that Russ can't afford to move anywhere else even if he does sell, he would never get a brand new house for the tiny profit the house is now worth, so it is pointless and it isn't something he wants to do. He wanted to stay in this house for a long time to come. BUT they decided they knew what was best for us without talking to us or asking our needs first.

THEN...☟ ☟ ☟ ☟

The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October

THEN... ☟ ☟ ☟ ☟

On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."

I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.

I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.

THEN...☟ ☟ ☟ ☟

The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."

The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".

I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.

I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.

THEN... I received this email today☟ ☟ ☟ ☟

To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."

To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".

Uhhhhh, how are you not judging me?

You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.

Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.

☟ ☟ ☟ ☟☟ ☟ ☟ ☟

I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.

If I win lotto tomorrow it would be 21 million reasons to not bank with them!

But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.

I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.

I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.

I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.

Posted by: Talya AT 02:51 am   |  Permalink   |  0 Comments  |  Email
Monday, September 05 2016

Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.

While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.

And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.

☟  ☟  ☟  ☟  ☟  ☟

My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:

I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.

I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.

I know I’m not going anywhere.

The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”

Love:
Talya and I have a connection that may only come once in a lifetime.

Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.

Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.

Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.

Commitment:
I vowed to be there in sickness and in health. That was a promise I made in front of our friends and families, but more importantly, one that I made to her.

We are only as good as our word. I gave her mine, she gave me her heart.

Forever:
I have stuck around because she is worth every second I can give her. I will continue to be by her side until she becomes the angel she’s always been inside.

And you’re right, I am a good bloke......

Because I met her!

About the Author:

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

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

 

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

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

 

Posted by: Russell AT 07:26 am   |  Permalink   |  3 Comments  |  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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