Shrinking the Silence

Sharing a voice on living with rare disease

Five years ago, my life was saved — November 20, 2019

Five years ago, my life was saved

In early October 2014, I woke up from a colonoscopy to a concerned looking gastroenterologist. She started asking me about any family history of cancer and from that moment on I knew the cause of my bowel problems were larger than I thought. I think back to that day… five years on… and I see it now as the day that saved my life.

One of the first blog posts I wrote was about my incredibly frustrating and long journey to be diagnosed with Familial Adenomatous Polyposis (FAP). It took over five years of explaining my embarrassing symptoms to multiple GPs with little response, so much so I had given up trying to find an answer.

I can’t imagine where I’d be today if I hadn’t tried one final time to be listened to.

The thing with FAP is that it causes hundreds of polyps to carpet your large bowel – by the time I was diagnosed there were many that were at a stage of high grade dysplasia (next step… cancerous). I was able to take a year to prepare physically and mentally for surgery and do other precautionary things that may be impacted by surgery which I’m incredibly grateful for. But in the terms of polyps turning to cancer it really is scary to think that I could have easily gone on for another year or two without a diagnosis and intervention.

Being treated in time has been so important because on top of polyps in the bowel, FAP also causes me to have lots of polyps throughout very tricky areas of my GI tract (duodenum, stomach and ampulla, next to the pancreas). Whilst unlike bowel polyps that will 100% turn cancerous in people with FAP, these ones still have a pretty high chance and come in large numbers (who doesn’t love a polyp party!)

So at the time of diagnosis this meant that alongside meeting my surgeon for the first time, I was also back in day surgery for a gastroscopy to see what was happening in those other places. Thankfully at the time of diagnosis there were polyps, but they were all the smallest they could possibly be.

I didn’t have to play catch up

Instead, I’ve been able to have yearly monitoring and as required I have the larger polyps in these areas removed. It’s not easy on the mind to live with pre-cancerous growths inside of you, but I take comfort that I’m taking preventative action and my timely diagnosis meant this was possible for me.

Five years has been a long time and it’s given me time to reflect on what I went through to get diagnosed. In my first blog I wrote about one of the many GPs I saw who dismissed my fears and sent me on my way due to my age. His words made me feel like I was overplaying my symptoms and were what stopped me looking for an answer for the next two years. Am I still angry about how I was treated? Yes. But I have managed to process it all a little more and see that this is a bigger problem than this one GP. I’ve connected with more people on social media around the world, and been involved with Bowel Cancer Australia’s Never Too Young campaign and there are sadly too many diagnosis stories like mine.

Through understanding that there needs to be more awareness about bowel cancer in younger patients, I’ve directed my anger and frustrations towards that, in the hope of making it an easier diagnosis path for people in the future.

The wake up call to listen to my body — October 12, 2019

The wake up call to listen to my body

This is a pretty insignificant public plantar pot, but I happened to have a run in with it a few years ago. And by run in, I mean I was walking up to the shops and the world started spinning and next minute I was lying in the plantar, woken up by a passer by-er.

I walked past it today and it made me think how much better I have become in noticing my symptoms and acting before it reaches the point of no return.

In the lead up to this incident, the signs were there. I had started a new treatment a few months ago that my body was still adjusting to. It was less full on than chemo so I let my guard down on keeping up with anti nausea drugs but the reality was I could hardly eat because I was so nauseous and I was definitely experiencing diarrhoea. Yet it became my new normal so I didn’t even think to discuss the symptoms with the nurses. I just kept going and going until my body couldn’t go anymore.

I fainted and was very lucky that I fell into soil and not solid concrete as I did hit the back of my head. I spent the next few days in hospital rehydrating myself.

Dehydration is always going to be a risk for me, it comes hand in hand with having no large bowel to hold and absorb water and nutrients like I did before. Since this day I’ve had more times where I’ve become dehydrated and I have picked up on things like how the taste and satisfaction of water changes and how I feel disorientated and struggle to speak coherently. I’ve also learnt that with dehydration or UTIs that I regularly get, things can go from pretty mild to extreme in a very short time. When I first got sick I didn’t want to be the type of patient who was always asking for help so only really mentioned problems when they were at that point of no return. Reality is, doctors and nurses want to help but can’t when they don’t know the full picture, so I’ve gotten better at reaching out as well.

It’s not easy to have to slow down or check yourself into hospital when chronic things pop up…but I know now from experience that when I do act early, I’m better off in the long run.

Any body, whether it’s chronically ill or perfectly healthy, has limits – don’t forget to notice your normal and what you can do when you’re physically struggling.

Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.

Hopefully I have helped a little and will continue to shrink the silence for those who read my story.

In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.

Continue reading

When bad news strikes — October 15, 2017
2 years on from my surgery — September 4, 2017
Going on holiday with extra baggage — July 21, 2017

Going on holiday with extra baggage

For the first time since my surgeries and desmoid tumour, I went on holiday overseas, to Hawaii, with my rare diseases in tow. I was so nervous in the lead up, as with me… whenever I end up in hospital it is usually out of the blue and the last thing I wanted was to end up in hospital overseas. Luckily all went smoothly and I had an amazing time soaking up the sunshine and catching up with my good friend who showed me around the island!

It was also the first time going on a long plane trip since having my j-pouch (aka no large colon). I know that the altitude can cause a few problems so I was worried that on a 10 hour flight I’d be in and out of the bathroom a lot – but actually on both flights I had no issues at all and with my trusty aisle seat a bathroom was always nearby.

Taking a trip for me now means I have to do a bit more preparing with my travel insurance, doctors letters and making sure I have packed my medications – but it is do-able and this trip has shown I can get away with minimal issues, even while on active treatment for this desmoid tumour.

There’s something about getting on a plane and going far, far away that really made me feel I’d had a proper break from work and all the medical appointments associated with my current treatment.

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Learning to trust — May 30, 2017