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Feeling Ostomistic
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
Comments:
I'm only as strong as I need to be in order to protect the one thing I hold most dear. And, yes, that's you doofus! Thank you for the 6 years you've already given me and I hope you fight like hell to give me many more!!
Posted by Russ on 24/07/2015 - 10:15 PM

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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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