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Feeling Ostomistic
Saturday, November 11 2017

CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body


Our family photos Xmas '17, how tiny and adorable he was!

If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.

Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.

Dusty has filled a void that I have had for far too long, and I know Russ will say the same.

Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.

However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.


Russ and Dusty Hi-5ing as they visit me in hospital

Our Hopes for a family:

Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.

We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.

Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene. 

My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.

Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.

In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.

I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.

So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.

In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.

Which brings us to 12 months ago:

We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.

Russ was completley smitten and in love.

It filled my heart with so much joy seeing the bond they've shared over the past year.

Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him. 

It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.

I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.

Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.

He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.

I now feel like we are a family and we have Dusty to thank for completing our lives.

I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.

I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.


Have you got a little furbaby? Have you found the benefits they have made to your health and wellbeing as well?

Posted by: Talya AT 05:40 pm   |  Permalink   |  1 Comment  |  Email
Monday, August 01 2016

Last year I heard about this incredible organisation called Share the dignity, which is a charity that helps to support homeless women and women in need when it comes to 'that time of the month'.

Their slogan is "no woman should have to choose between buying food or buying sanitary items", this really struck home for me.


Image courtesy of the Share the Dignity facebook page

When we often think of homeless or poverty we imagine people living on the streets, in their cars or in refuge shelters. But this isn't always true. You can have a roof over your head and be poor or poverty stricken.

According to the Australian Council of Social Services (ACOSS) there are 2.5 million Australians living under the poverty line, which for a country deemed 'the lucky country' that seems like an awful lot to me.

When the campaigns from share the dignity were being shared around on social media, there were comments that I observed that went along the lines of "that is an exaggeration surely, you aren't that poor that you can't afford pads or tampons or choose between that or eating"... as I said it was the general gist of the conversations going round.

But I know firsthand how stressful and hard it is when you do get your period and you honestly have to make the decision between buying pads or food... because it happened to me on several occassions.

When I was a teenager I felt embarrassed each month to ask for pads or tampons as I knew they were another expense we couldn't really afford (and I felt guilty asking). So when I got my first job I was rather elated that I could take responsibility for myself and I had money to buy pads and other personal care items I needed. I was independant and I didn't have to ask to buy them as I was in control of my own money.

I took living at home cheaply for granted and it wasn't until I moved out of home that I realised that rent and living expenses are so costly!

The day after graduating year 12 (Nov' 2008) I moved to Brisbane and was living in share housing. My rent was $100 a week and all the utilities were shared. I needed to pay for a train ticket to and from work and leading up to Christmas I had a lot of work and was doing okay... then Christmas came and went and the hours dropped to 8 hours a week which was $80 there about. I wasn't entitled to centrelink as my dad earned too much (even though he wasn't financially supporting me, it didn't matter to them). I was struggling to find another job and I was struggling to pay my rent and had to keep borrowing $20 off of a familly member each week to cover my rent. I didn't have money for food, I didn't have money for the train, I didn't have money for pads. I tried to stay at my boyfriend's house through the week so I could eat... it felt so humiliating!

Then my plans to study at university in QLD fell through, and I was offered a HECS supported place in Coffs Harbour so I moved. Centrelink finally offered me youth allowance which was $290 a fortnight. The house I was renting was $145 a week so my centrelink was consumed by my rent. I had to resort to borrowing $20 each week (off of family) so that I could buy food and pay for the bus to uni (I couldn't afford petrol). I tried so hard to find a job but I kept getting knocked back. I was a struggling uni student.

But there were times where I had to choose between food or pads, and it was a difficult decision. I have endometriosis so my periods were always rather heavy and it meant that I needed more than 1 packet of heavy pads each month, and I am allergic to pads but found the Libra overnight pads to irritate me the least (but they were costly)... but for that week that I had my period I was literally living off of those cups of noodles that you add hot water to and it cooks it... there were nights where my housemates took pity on me and would cook extra food that night so I could eat properly.

Then I moved into a cheaper share house where the rent was only $120 a week so out of my $290 a fortnight payment I now had $50 a fortnight. I felt so rich! I didn't have to call up family desperate for $20 anymore and my housemates cooked everynight and were happy if I gave them money towards groceries and they let me eat with them... also meant I had money for pads each month.

Unless you have been in that situation, you don't know how satisyfing and what a relief it feels to know that you don't have to choose that week between eating or buying pads.

At the end of 2009, my situation changed and I moved in with my then boyfriend (now husband) and his rent was only $180 a week so we went halves and it meant my fortnightly student allowance could go even further.

How you can help to share the dignity.....

So this August I ask you when you're next doing your groceries to buy an extra packet of pads or tampons and drop off to one of the Share the dignity collection points, so that they can be distributed to charities such as womens shelters to help women in need to have dignity when it comes to their period.

To find a collection point or learn more about what they do, visit their website.

P.S they also have a #itsinthebag initiative where they ask you to fill a handbag with a list of essential items and it is handed out to homeless women at Christmas. I am working on 3 of these handbags to pass on, these are handbags I was no longer using (and still in good condition) so what a better way to give them a new purpose! Find out more about this campaign here.


Image courtesy of their facebook group

 

 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: Talya AT 02:10 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
Friday, July 24 2015

Today marks 5 years since I walked down the aisle and said "I do" to my incredible husband.

We have gone through so much these past 5 years, and when they say marriage is for sickness and in health they weren't kidding!

We have often been told that our love story is incredible and a true testament to how much you're willing to do when someone you love is sick or ill.

I met Russell (my spunky hubby) when I was 18 and this crazy and bubbly first year nursing student at uni. I needed a new laptop after my laptop decided to go for a bit of a swim during the March '09 Coffs Harbour floods... so I desperately needed a laptop to keep up with uni work.

I headed off to my local Wow sight and sound electronics superstore (which has since closed) and was on a mission to find a new laptop. I was greeted by this rather adorable and spunky computer salesman (and I could tell he was a bit nerdy too) so I pulled out all my charm and wit and tried to pretend to understand whatever computer mumbo jumbo he was going on about... it was so hard to focus when his eyes were so dreamy!

I was a poor uni student who didn't have contents insurance or much savings, so I needed to apply for finance for a laptop.

I spent the next couple of hours chatting with this salesman while we were doing the application, and he claims I was hitting on him (I say otherwise) but when I was rejected for finance I was about to head home and decided I would ask for his number but just like GE and flexirent, he too rejected me.

A couple of months passed and I had received a scholarship from uni and had some savings in place to attempt to buy the laptop again. So I tried to wait until a couple of months had passed before I returned to the store in the hopes he wouldn't remember me.

I had even gone to the troubles of dying my hair a red/purple colour and cutting it really short.

So the day came in July (3 months later) and I wondered into the computer department when I noticed the hot salesman. I tried to avoid his attention (I still felt the shame) and pretended to be busy looking at computers when he walked up and approached me. He smiled and said "It's Talya isn't it" and I felt my face turning red like a beetroot and in my head I was cursing with a few "f#$%, f$#%, f$#%"'s and really wished he hadn't of remembered me.

But I felt my face returning to normal and told him I was ready to buy that $2000 laptop I wanted and would need a new printer, MS office word and some extended warranty (I was every computer salesman's dream customer.. one that knew what they wanted). He started to get it all organised when he said to me "I am sorry for not getting your number that day, I have regretted it everyday since and just hoped I would see you again and not be shy to get your number".

So we got talking and he asked what I was up to since I saw him last, and I told him how I had been sick and waiting to have brain surgery in a month's time.

His response was "What superpower are your getting?" which was pretty typical for a nerd, and made me smile. I left with his number and a new computer and sat by my phone waiting for 5.30pm to come so I could call him.

We chatted for ages on the phone and organised to have a date the following sunday and chatted every night leading up to our date. It was like we had known each other forever, and I really felt that I could be myself and could trust him. There was that instant connection.

My friends gave me a bit of a hard time over the age gap. I was 18 and he was 29, but never has it felt like there was this gap between our ages. Sometimes I think he is a kid with the way he acts and carries on... but they do say it takes a long time for males to mature LOL.

So we went on our first date and we started dating and he really helped me come to terms with my upcoming brain surgery, which I was so scared about (and it was also going to be filmed for the RPA TV show).

Russ was there for me through my brain surgeries even though he barely knew me, and my dad really admired that in him and the way he took care of me when I was sick. So I was almost in the second month out of three for my hospital stay (I devleoped golden staph/MRSA in fection after one of my surgeries so was 2 month treatment to rid me of the infection) when he proposed.

We got married the following July, and everyone thought I was being married because I was pregnant (which I wasn't and yet to have a child) or that it wouldn't last because I am too young or that I was rushing into it.... what many failed to grasp was when you are faced with life or death you soon realise how crucial it is to make the most of everyday you are alive... I was doing just that, living life at its fullest and not missing out on any opportunities.

Our wedding was a beautiful, intimate and relaxing day. Aside from the usual family drama that comes with a wedding, the day was better than expected. The weather held off, and we got married on a headland and saw whales breaching in the background, it was truly magical!

Best of all the wedding (including our outfits) was under $2500! I wanted to save as much on the wedding so we could have the honeymoon we dreamed of!

Not long after our wedding I started a traineeship at a bank and learnt of my dad's terminal bowel cancer and that it was a rare inherited type known as FAP. I started screening and testing which was confirmed I too inherited this disease and started meeting with an array of doctors and specialists who wanted me to fastrack having a family (preferably via IVF to diagnose any embryo's affected with the gene).

It was hard being a newlywed and finding out that your dreams of having a family and that you're at a 80% risk of bowel cancer and prone to other tumours and cancers and will require 6 monthly surveilence.

It was a lot for us to come to terms with, but we got through it all and Russ was there for me.

2012

Dad lost his battle in March 2012, 3 days after my 21st birthday and Russ supported me through my grief.

Wow went into administration and Russ was made redundant in April, and he struggled to find work. I was able to pick up extra shifts but things were so difficult. I was finding my health especially my bowels deteriorating and I was in constant pain, but I had to keep working or we would have lost everything. I lived off of our credit cards to help make ends meat, as I was now needing to work enough to cover 2 incomes.

In September Russ thankfully got offered a job with a well established company coming to Coffs and it meant I could reduce my hours so I could finally go to Doctors appointments and catch up on colonoscopies.

After a few months on the waiting list to see a gynocologist, he booked me in for investigative surgery the following week as he discovered I had a large mass on one of my ovaries.

So I had a colonoscopy on Oct 8th and a laporoscopy, cystoscopy and hysteroscopy done on the 10th and it was discovered I had severe stage IV endometriosis with my surgeon saying "it was one of the worst cases he has seen in his career and in someone who was 21". I had a 15cm round enometrioma removed off of my left ovary along with the lining of the ovary, a couple of 7cm masses removed and a hundred 1 and 2cm sites removed as well.

Because of the extent of the damage I was placed in a medically induced menopause for 6 months and it was horrible. I was so sick and it took me a few months to recover from the surgery (sex was a no go, just hurt too much and still does) and I made the decision to stop working so I could recover and focus on my health. Russ was great about it and was so supportive and did everything to help me get better.

The week I finished up working (was Nov 24th) I found out the results from my colonoscopy, which showed the polyps in my bowel and rectum were in the early stages of becoming cancerous and I had an estimated 6 months to have my bowel removed before the cancer fully turned and spread. I was told I would need a permanent ileostomy.

2013

The start of 2013 involved a lot of appointments with stoma therapy nurses and surgeons to ensure I understood what was going to happen. I was really struggling to come to terms with the idea of having an ileostomy and knowing it will be a lifelong decision was rather daunting.

Heck, all I wanted to do was be a normal 21 year old and I felt that my health was taking a lot of normalcy away from me.

So the surgery was scheduled for April, which was cancelled just as they were about to put me under and rescheduled a month later at the main hospital (for safety reasons) so it meant another month of trying to process it.

Russ was incredible through all this, he came to all my appointments and even asked to be shown what to do to help me do a bag change and wanted to be involved. He was there when I had my surgery and helped me to get out of bed and walk around (which was so painful) but he also would come and visit me every day for the month I was in hospital even after he had been working all day and would take home clothes to wash and bring me new clothes the following day, he would even help me to shower.

And no matter what has happened, he has never seen me as gross or disgusting because I have a stoma and continues to be attacted to me and love me unconditionally.

In 2013, I also developed acute recurrent pancreatitis which meant a lot more visits in hospital

2014

This year wasn't as intense with as many surgeries but still had a lot of pancreatitis visits to hospital.

It was also discovered in July that year that there was a large abdominal mass, and was sent to Sydney for investigations and ordered to have PET scans, which after reviewing the October PET scan the doctors wanted me to repeat it in Feb 2015, so it was months of waiting to see what these tumours were.

2015

In Feb' I had the repeat PET scan which showed there was activity on my thyroid, breast, multiple tumours in my abdomen as well as the bigger tumour now completly blocking my left kidney. This meant being admitted into hospital for further tests which went over a period of 5 weeks. I was in hospital some 800kms away from home, and it was really hard for Russ being home working and he wasn't coping trying to come to terms with everything. But in true stubborn male form, he wouldn't talk about it all either.

He helped me through my thyroid surgery and I wasn't very well and he helped me to shower and take care of me. When he arrived the morning after my surgery I was still sedated with a ventillator attached and tubes hooked up everywhere, he didn't cope well seeing me how I was and when I saw how I looked even I was worried.

I just found out I will be needing brain surgery again, and still waiting to see if my desmoid tumours will shrink or if I will need chemo, but it has made all the difference knowing that no matter what happens my husband will be there to help me.

He works so hard to help support us while I haven't been able to return to the workforce and he is great at putting up with my mood swings, some days I am coping but other days I am a mess, and he doesn't judge me. He always knows the right things to say!

But in the 5 years I have been married and been chronically sick, I have learnt 5 very important things:

#1
it is okay to ask for help. This is something I have struggled with my entire life and I felt I needed to be so independant that I wouldn't ever ask for help. I realised that if I don't ask for help that others especially my husband wouldn't realise I need help.

#2
it is okay to be dependant on someone else. I always felt that I had to be my own person and felt so guilty when I first stopped working as I wasn't contributing and became financially dependant on my husband. But not just financially but emotionally and pysically too. There have been times where in all honesty I was too sick to shower, wash my hair or even wipe my own bum. But he has never made me feel pathetic or to be embarrased of needing his help. Heck he has even had to feed me after I had brain surgery. I don't feel there is anything left to be embarrased about around him, and he just takes everything about me in his stride and loves me no matter what.

#3
it is important to have things that you do on your own and don't always have to do everything together as a way to help you cope with illness and being sick. My husband loves his gaming and computers whereas I love my craft and being creative. We know to respect each other's space when we need to deal with things and I think it is a big part of us being able to get along so well (we have never had a fight).

#4
to have an intimate marriage doesn't necessarily mean it has to be intimate in a sexual way. I am thankful that I have an amazing husband who understands that while sex is enjoyable for him, it isn't something I enjoy doing due to the endometriosis and all the scar tissue. But he has never made me to feel bad for not wanting to have sex, and never forces this on me. Even before I got sick our relationship wasn't based solely on sex. We communicate a lot and have shared intimate moments through him taking care of me in times of sickness. Showing intimacy isn't just about sex.

#5
Any medical or life altering decisions is something that should be done together and not something that you have to only take on the burden on your own. When you get married everything you do becomes a team effort, and there have been times where I struggled to make a decision on my own and really valued Russ' input. I was really against having the surgery to have my stoma and collectomy and I didn't want the surgery but he insisted and told me he would rather have me alive than be dead. 

A huge thank you to my husband for helping me through the last 5 years, without you I don't believe I would have made it. You're my hero x

 
Posted by: Talya AT 01:00 am   |  Permalink   |  1 Comment  |  Email
Friday, October 24 2014

I have been waiting a while to publish this blog post as I didn't want to ruin the show for anyone who has yet to watch the latest season of the show Winners & Losers (aired on 7 Tuesday Nights at 8.40).

But although this season had the usual up and down moments of emotion, there was something that really stood out to me.

I wish that I could say that I have always found the show relatable, but unfortunately I haven't had the luck of winning the lotto.

But there was something this season that made the show more relatable to me...

Have you ever sat there and watched a show or a movie and just either thought or said out loud the occasional 'uh-huh' or 'yup!'?

Well that was how I felt when watching 'Jenny' go through her diagnosis.

I really want to commend Melissa Bergland (who plays Jenny) on her very convincing and 'life like' portrayal of emotions felt when you learn that you might need genetic testing for a horrible inherited cancer gene that is prominent in your family.

It was so good to see the process and emotions felt from the time you undergo genetic testing, to waiting anxiously for 6 weeks for the results to come back, to meeting with genetic counsellors, to meeting with surgeons, to having 'that talk' with your family, to having the surgery, and to the grief that is felt after you lose a part of yourself.

While I don't have the BRCA gene, I do have the FAP gene- a cancer causing inherited condition.

I remember when 'Jenny' was first told that she did indeed have the gene, there were friends on facebook that were complaining about how 'over the top' or 'how exaggerated' the feelings/questions and emotions expressed were.

But you know what?

That really made me quite angry.

People who haven't had to go through the torment of learning you could have this inherited cancer condition really have no idea of the emotions or thoughts that race through your mind.

I fired up and said how accurate the portrayal was and so relatable as I HAVE BEEN THERE, I have asked those questions, felt those emotions and had "that talk" with my family.

When we first learned of FAP:


My dad and I at my wedding 24.07.10

I remember when I first learnt that this inherited cancer causing disease was in our family- it was a week after my wedding (2010) and my dad called an "urgent family meeting".

He broke the news that he had terminal bowel cancer and that his form was caused by a condition called FAP that is a rare inherited disease and that we would all need to be tested at some stage down the track.

I remember looking around the table at my dad who looked so scared, and to my siblings whom some were trying to comprehend what just happened and the younger ones who didn't quite understand what was happening.

I remember my dad looking at me accross the table, squeezed my hand and mouthed "it will all be okay Pumpkin".

I was 19 at the time and my paternal siblings (then) ranged from 17, 15, 13, 11, 9, and the youngest was 8.

Dad dismissed the kids from the table as he wanted to chat to me and my husband alone and he said he had been speaking with his doctors about the symptoms I was already showing and it was suggested that I get tested ASAP.

The getting tested/diagnosis process:

I went for the genetic test that following week, which was a blood test and waited anxiously over the next 6 weeks for the results to come back.

That day came and I went into the appointment with a feeling in my gut that I was about to get the news that we dreaded but kind of prepared myself for the worst.

It was confirmed I too had FAP and the geneticist went over what happens next, what having FAP will mean for me and my husband, and what it would mean going forward.

The following week I had my first colonoscopy and gastroscopy (boy was that a first-time experience I won't be forgetting in a hurry) and a couple of weeks later it was confirmed that there was large polyp growth in my bowel and rectum which had spread to my stomach, duodenum, GI tract within 6 months.

I then had to have appointments with OBGYN and fertility specialists to talk about the future possibility of having a family and what we wanted to do as FAP is a 50/50 chance of being passed on. We went over plans of doing IVF where they can screen each embryo for FAP and also met with colorectal surgeons to discuss surgery options.

Initially it was thought that my case plan could be loosely based on my dad's history in the sense that he was 39 when he was diagnosed with FAP/terminal bowel cancer and that I too could have the 'late onset' which would mean delaying surgery until I was around 26-30... this meant I had 7-11 years to start a family, I was in no rush....

Then in 2012 my whole world was turned upside down..... 


My dad and siblings at my wedding

In march (on the 10th) I celebrated my 21st birthday and on the 11th my dad celebrated his 41st birthday. The following day we were told that he doesn't have much longer to live it could be a day or it could be a week. That night he passed away at around 3am the following morning.

Then in October on the 8th I had my routine 6 monthly colonoscopy and two days later on the 10th had a laparoscopy, hysteroscopy and cystoscopy and subsequent pelvic surgeries where it was confirmed I had severe stage IV endometriosis and due to the level of damage was placed in a medically induced menopause for 6 months while my body tried to recover.

A month after the colonoscopy, the test results of the biopsies of my colon returned and showed that my bowel was beginning to show early signs of turning into bowel cancer and that I only had months to have my entire bowel removed before the cancer fully turned and spread.

I was struggling with the news and tried to keep it to just my husband and myself as I didn't want to burden my family who were still grieving the loss of my dad, being the first Christmas without him and not to ruin anyone's Christmas I bottled it all up.

Inside I was going through the range of emotions there was:
*Anger- Why me?
*Denial- "I don't need this surgery, it will all be fine"
*Isolation- I just wanted to do it on my own without any help
*Fear- the fear that my life would be over and that I should just run away

What made it hard was when I eventually did decide to tell family about the diagnosis and impeding surgery, it was about 1 month before it was all due to happen.

Most were angry at me that I kept it from then, but there were the remainder that felt that "the surgery was uncessesary" or that "it is too drastic surely there is a better option, go get a second opinion".

But the reality was I could get my bowel removed now BEFORE it had turned into cancer OR wait until the cancer turns, have my bowel removed and hope that it was caught and removed early enough.

I felt that it was better to be preventative then to be sorry- and I knew just how 'Jenny' felt. I even cried with her, because it was that real and too close to home for me- that I felt like the show just "got" me.

The grief experienced when losing a part of yourself:


This was me hours after my surgery, (I just got out of recovery and was in ICU)

After Jen's surgery there was an episode where she grieved for what she lost-her boobs... now some reading this might be thinking "c'mon that is just ridiculous grieving over losing your boobs".

But would you believe me if I said after my surgery I grieved over the loss of my bowel?.... because I did.

I know it probably sounds weird and gross to be sad about losing your bowel, but it was that I felt a part of me was missing (although literally was) that with it I felt like I lost my independence, I grieved for the loss of my dad, and I threw the biggest bloody self pity party I ever have had. It was so emotional and such an ordeal that I had to learn a new way of what my life would be like and it was a lot to process and adapt with.

Mostly it was hard to adapt as for 21 years if I needed to 'do a number 2' I would go to the toilet and do my business, but with no longer having my large bowel I had to adapt to the idea and thought that I would essentially be going 'number 2' 24/7. 

Although it has been a few years now since my initial diagnosis of FAP or almost 18 months since my surgery, those emotions are still there.

Thank you to the writers and to Melissa Bergland....

So I thank the writers of this latest season of Winners & Losers for helping to show the real side of learning what it is like to go through genetic testing and preventative surgery, and to help people like me feel like someone simply 'gets them'.

Thanks again Melissa Bergland for your accurate portrayal of the emotions experienced.

Ostomistically Yours,
Talya

P.S has there been a show that you could strongly relate to? If so leave a comment below of the show and what made you feel so relatable to it.

Where to get help:

Like my family, if FAP is something that you are affected by or wanting some more information and support you can contact the Cancer Council who have information that can help you, and also has a heridetary cancer register that reminds you when you are due for your next colonoscopy. Find more information on FAP via their website.

Like the Gross Family, many Australians are affected by Breast Cancer.If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women - 1800 500 258 or www.bcna.org.au.

 

 
Posted by: Talya AT 08:42 am   |  Permalink   |  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
Thursday, May 29 2014

Menopause... The one thing women dread about getting older and going through 'the change of life'.

You always hear women express their feelings towards menopause and as a young women you think
"surely it isn't really that bad".

Boy was I wrong!

When I was 21 I was diagnosed with stage IV endometriosis and had surgery to remove what was found.
On my right ovary I had a 15cm round mass (an endometrioma) which was removed along with the lining of my ovary.
I also had a 7cm mass removed from my uterus along with another 5cm mass.
Through the use of lasers over 200 1- 2cm sites were excised.

I remember waking from surgery and my surgeon came to speak to me when I woke up.

He told me that in his career, my case was one of the more worse conditions he had seen, and as a result of the damage
that I would need to be placed in a medically induced menopause for 6 months to try and let my body repair.

I was prescribed 6 courses of Zoladex injections and given my first the following morning.

I had no idea what to expect!

All I kept thinking to myself was
"doubt menopause would be that bad".

Afterall I was excited to not have my period for 6 months!

Ever since my first period (was in year 5) I have had extremely bad period pain along with heavy periods.
When I was in year 7 the pain started getting that bad that I used to vommit and would curl up in a ball and just cry.
Later it became a 'norm' to get diorreah and bleeding during my period.

No one believed how bad my periods were. I kept being told to "just suck it up"
and that it was only "just period pain".

It wasn't until I was staying with a relative in grade 9 when I was up all night with vommiting and diorreah
and bad period pain, that she came and chatted to me about it.
She told me how much she suffered (even to this day) with periods.
She sympathised with me, she cried with me, but she also gave me something to help control the pain.

Due to events that happened I ended up moving in with her a couple of months afterwards, and one of the first things
we did was to go to the doctor. She was determined to get me the help that I needed with my periods
as they were just getting worse. We tried all sorts things from different types of the pill,
to specific period pain medication available over the counter.
Nothing helped!

BUT one thing doctors kept saying when we discussed endometriosis was that
"Young people don't get endometriosis".

My periods became that debilitating that I had to have time off work and school, and often I would be at work
(I was a checkout operator) and suddenly would get pain, nausea and passout.

They were never regular enough that I could 'predict' and
so many people (except for my Aunt) thought I was faking it.

When I got older, I found my periods and symptoms each month were getting worse and
I was lucky in 2011 to have found a GP that wanted to look into what was going on
and wouldn't just pass it off as 'being overweight' like many before.

He got me reffered to a specialist who listened and understood and empathised.

He told me that in 2 weeks he would book me in for a cystoscopy, hysteroscopy and laperoscopy.
He was determined to find out what was wrong.

I was so relieved when he told me I had endometriosis,
it meant years of sufferring finally had a name.

So I started my 6 months of injections of Zolodex and was happy I had no period.

But I must say I sympathise with all those who complain about menopause and how horrible it truly is!

The hot flushes were the worse!
I always felt hot and gross and would be standing in line at the supermarket and next minute I am dripping in sweat
and feeling like I am ready to just about to pass out.
It was so humiliating!

The vaginal dryness was pretty uncomfortable and at times felt like sandpaper. Was horrible!
Made sex more uncomfortable then it already was (down side to endo is painful sex).

I found there were some days where all I could do was lay in bed due to the horrid nausea.
If I ate food I would have to try so hard not to fall asleep afterwards.

The other downsides to the menopause was the weight gain, excess hair growth (now have a beard),
the headaches, moodswings, hormonal and bloating.

Gosh, I would just break down and cry at the slightest thing whether it was reading a newspaper, watching tv,
talking to someone... just anything slightly sad I was just a blubbering mess!

Although they say that it was a reversible menopause, it has been 12 months since my last injection
and I still suffer from some of the symptoms. My periods returned around 3 months after the last injection 
and have never been the same. I have spoken to my doctors and they said sometimes it effects the hormones that much
that it can sometimes still be like part of your body is still in menopause.

I still have the excessive facial hair issues, hot flushes, hormone fluctuation and nausea.

Part of me is dreading having to go through all this again,
......but for real this time!

When people learn that I went through menopause at 21 they don't believe me or that
doctors can medically induce a menopause.

Please remember zolodex and menopause affects individuals differently. Due to the pain and recovery from the surgeries
along with the medically induced menopause I had to cease working and employment. The week after I stopped working
I learnt that I was needing to have my bowel removed within the following 6 months. It was a very trying and emotional time.

Menopausally yours,
Talya xx

 
Posted by: Talya AT 12:19 am   |  Permalink   |  Email
Tuesday, February 25 2014

"Tears are the words the heart can't express"

I wish that there was an end to Endometriosis.

It's hard to write this blog post all optimistic and happy when inside it just hurts.

Tonight a friend called to share the news that she is pregnant and expecting a child in 30 weeks. It is so hard to be happy for her when my heart just aches.

I honestly thought that over the years everytime a friend announced they were pregnant the pain inside would get easier and not ache so much.

I tell myself most days that I have accepted never having a child of my own and I try to convince myself that I have come to terms with it but with reality I don't think I will come to terms with it, or at least not in the forseeable future.

1 in 10 women have endometriosis. I am one of those women.

"It's hard to wait around for something that might never be,
It's even harder to let go when it's all you have ever wanted"

I have dreamed my whole life of being a mother, of showing my child what growing up being loved feels like. 

I was first told when I was a teenager that there was a possibility I had Endometriosis but I was told that I was too young and teenagers don't get endometriosis.

For as long as I remember since having my first period when I was 9, that really painful periods were normal as that was all I knew.

It was frustrating when my friends started having their periods and they had 'normal' painless periods and would often acuse me of lying about just how bad mine were.

Mine have always been heavy and painful and required me taking a lot of time off from school or work when they arrived each month as I would be in bed on painkillers.

When I was 11 I started experiencing vomitting and diorreah every time my periods arrived.

When I was 14 I started losing blood from my bowels with each period, and when I was 21 it got that bad that I was losing more blood through my bowels then the 'normal' way.

But the doctors I had kept telling me that it was 'normal' and not to worry.

I wish I had of found the right doctors from early on as when I found my doctor in 2012 at the age of 21 he found via a laporoscopy, cystoscopy and hysteroscopy that I had stage IV endometriosis.

My doctor told me it was one of the most severe cases he had seen in his career and that the damage was so extensive that he had to place me in a medically induced menopause.

I learnt that I had a 15cm endometrioma on my right ovary (which he removed that and the lining of my ovary), a 7cm mass in my pelvic area and another 7cm mass in my uterus. He also told me there were hundreds of 1 and 2cm masses which were removed from all over.

He told me that I wouldn't be able to have a child naturally and because of the extent of the damage to my uterus the likely hood that an egg would attach and hold would be unlikely.

Having gone through a medically induced menopause I have a lot of sympathy for those older women who I have always heard talk about how bad it was. It really made me realise they weren't just old women complaining that menopause is really horrible- because trust me it really is!

My heart aches for my husband who has when we met he was ready to settle down and start a family. He is 11 years older and at the time of meeting was 29. He told me how much he wants to be a dad and being the last male in his blood line and heritage he really would like to pass on his family name as a legacy. I know it sounds very old school but he is good like that.

So for 5 years I have watched him get all clucky over friends babies and hear him say he would like a child, and it makes my heart ache even more as I feel pathetic that I can't give him what naturally a woman should be able to do.

It doesn't help that there aren't many people around us that are understanding or supportive and keep saying things like "it will happen in due course" or "when you stop trying it will happen".

I know it hurts my husband as he tells me it does.

I know there are other options like adopting or fostering which are plans we will take, but it doesn't make it hurt any less that I can't have a child.

IVF isn't really a viable option as we can't afford the gamble and would only work for us if there was a surrogate which I don't feel comfortable accepting. I just feel like I wouldn't be able to repay them this huge favour.

And then there is the whole heridetary condition I have, and I know its only a 50% chance of passing it on, but thats too big of a risk for me. I know how much the FAP has affected my life and I would feel too much guilt if I was the reason my child suffered.

This month is endometriosis awareness month and I will be doing a range of activities to raise awareness. For more information or to get involved check out Endometriosis Australia.

Ostomistically yours,

Talya xx

Posted by: Talya AT 06:53 pm   |  Permalink   |  0 Comments  |  Email
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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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