Part 1: Where it all began…

The birth of 'Let's talk about poo'

The story that I am about to write, was told originally at True Stories Live at Norwich Arts Centre in November this year (2019). Sadly the audio recording didn’t work, so I have reorganised it in the written form below.

Telling my first ‘cancer’ story that night was really empowering and allowed me to feel like I was in charge.

My story went something like this:

I first became a statistical anomaly in 2011 when I was one of the 6 in 10,000 women who develop potentially lethal blood clots as a result of being on the combined contraceptive pill.

As I got more and more ill, I googled my symptoms, always ignoring that really serious and scary option, because that would never happen: I was young and I was fit. Young and fit people don’t get pulmonary embolisms – old people do. It would never happen to me.

But it did. And it was scary. And although I’m ok now, it meant that I wasn’t actually that surprised when, on September 2019, the doctor told me I had cancer, despite having already had a negative screening for the cancer-causing Lynch Syndrome, carried by my family. And I guess the reason I wasn’t so surprised was because last time something bad but unlikely had happened to me, I’d told myself it wouldn’t, and it had.

Bowel cancer has been part of my family’s story – my story – for as long as I can remember. My grandfather Maynard died at its hands aged 46 when my father was only 14. He was eventually followed by both my great Aunts. Then, about 20 years ago my Uncle David was diagnosed as well, and the exploration into the familial genetic link began.

3 out of 4 brothers tested positive for Lynch Syndrome, including my dad. Lynch Syndrome, previously known as ‘hereditary non-polyposis colorectal cancer – or HNPCC to its friends – is (very) basically a faulty gene whose carriers have an 80% higher risk of developing multiple cancers in their life time. It’s thought that 1 in 300 people may be carriers.

I was screened in my early 20s when I had moved ‘up north’ to go to university. This was in Australia. My Dad travelled up from Sydney to be with me when I received my results.

He cried with relief when they announced that my screening was negative. I don’t think I’d ever seen my dad cry before. He talked of the guilt he had felt, worrying that he may have handed down this genetic mutation and the knock on impact of this on the rest of our lives.

My sister’s screening had also been negative and to be honest, I don’t think we really appreciated the consequences of a positive result. As a result, I, at least, didn’t think too much more about it.

So much so, that when the IBS symptoms I’d been managing since I was 18 got worse, and I developed recurring anaemia that could not be explained away by diet or ‘heavy periods’ I brushed away questions about my family history. ‘Yes I have a family history, but I’ve been tested. I don’t have it, I’m safe’, I told my GP.

However, when I found that the cause of my anaemia was internal bleeding, my conviction began to wane. When I saw ‘URGENT’ stamped in red, shouting at me across the top of my colonoscopy referral form, my palms finally went clammy.

I googled my symptoms again, just like I had in 2011. Of course I did. And just like in 2011, I burried the niggling thoughts and ignored the most serious options. I clicked on the links to Crohn’s and Coeliac disease, to Ulcerative Colitis and Diverticulisis, but I ignored the blue-underlined ‘bowel cancer’ religiously.

‘The worse, and most likely result’ I lectured myself , ‘will be that there’s nothing wrong and I’ll just have to keep managing my symptoms till I die’. Because just like I’d told myself in 2011: ‘It won’t be that really bad thing. That won’t happen to me.’

However this time, deep down, I knew that because it had been that really bad thing before, there was absolutely nothing stopping it from being that really bad thing again.

So when they sat me and my partner down after my colonoscopy and explained that they had found a tumour in my large intestine, deep down, I wasn’t actually surprised.

Don’t get me wrong – it hit me with a force so big it hurt physically. And yes, it is exactly like the movies – the world slows down and words blur as you try to take them in. I struggled to breath, I swore, I gripped my partner’s hand and sobbed. ‘Oh no, oh no’ I repeated over and over again.

But somehow, it was a grief that took hold of all that I had suppressed and dragged into reality everything I had been trying to bury with every ounce of my being.

Currently 1 in 2 of us will develop cancer, of that only 5-10% of these cancers will be caused by a genetic condition. I’d love to know what percentage of these cancers followed a negative screening for said condition. It’s hard to find definitive statistics on this one although I suspect it’s quite unusual!

You can now listen to the podcast of the original story here. I think you can hear how disorganised my brain was at this stage - awaiting chemotherapy.