I wasn’t planning to do this tonight, but I have been asked today what my cancer story is, and not for the first time. So I’m basically doing now what I intended to do when I was first asked by someone on Tumblr a few months ago but never got around to – a brief summary of my cancer story.
In January 2010 when I was 22 I went to the doctor because I had been bleeding outta my butt and it wasn’t stopping. She sent me to A&E and I spent the night there having four pints of blood put back into me after being poked and prodded by the man who would turn out to be my consultant/surgeon, in front several medical students. Fairly sure I lost all sense of dignity that day and never regained it, but what’s dignity good for anyway?
The consultant said I had a polyp, which is a sort of warty growth. Fast forward a bit and I went back to hospital to have the polyp removed. I think. The timeline is so blurry. Fast forward a bit more to spring and I had an MRI, maybe a CT scan, can’t remember, and a colonoscopy – that last one was one of the most painful things I’ve ever experienced, and they found 18 polyps. One or two contained cancerous or pre-cancerous cells. Trying to remember now I’m so fuzzy on the details. They said I should have my colon (large bowel/large intestine) removed, so in August that’s what we did.
I was working at a supermarket at the time, part time as I had finished uni the year before and was looking for a full time job. I was off work for three months recovering from the operation, and I had a temporary stoma and colostomy bag. In January 2011 I had the stoma reversed, which means they turn part of the small intestine into a sort of makeshift large intestine, so I didn’t need the colostomy bag anymore. Both operations changed my body dramatically and it took a lot of getting used to. I remember getting all the unused colostomy stuff together – bags and so on – to return to the hospital, and even though it had only been a week or two, feeling like it was about twenty years since I’d had the stoma. Writing this now, I still find it difficult to believe that all of this has actually happened.
Fast forward a bit more and my parents and I had a meeting with a genetic counsellor who encouraged us to get tested to see if there was something genetic behind what had happened to me – and there was. It’s called Lynch syndrome and it’s an inherited gene that runs through families. It’s to do with a mismatch repair gene, and basically means that the genes that prevent you from getting cancer don’t work properly, making you more likely to get certain types of cancer, depending on what type of Lynch syndrome you have – ours is PMS2. I say ours because my parents both have it. You inherit one gene from your mum and one from your dad, so they had one good gene and one bad gene each. I inherited both their bad genes. My brother, who died when he was 16 and I was one year old, probably had it too. My sister doesn’t have it, which is a relief – for her and her two children. Since both my genes are bad, my children, if I have any, will definitely have it, too.
Lynch syndrome means you’re supposed to get plenty of screening to make sure you’re okay, so since my operations I’ve had a CT scan every year, which only stopped this year as it’s been six years now. I’ve also had a sigmoidoscopy every year (camera up the butt), which I think will now be every other year instead, and a gastroscopy every year (camera down the throat into the stomach), which is fucking awful and I’m due for one again in January or February. I also had a mild panic a while ago because my cervical screening came back abnormal with HPV and I had to have some abnormal cells scraped off my cervix – again, not very pleasant. The staff at the hospital are wonderful though; they really do give great care and support at my hospital. When I’m a bit older it’s also recommended that I have a hysterectomy, and probably my ovaries removed too, once we’ve had a family.
So with the whole Lynch syndrome thing and the screening, and the bad memories, and the fear of the future, it feels like this thing just never ends. Even when treatment is all over, and everyone has stopped asking about it, and it’s old news… it’s just not. Most days are fine, but when you catch a glimpse of your scars in the mirror, or your internal pouch isn’t behaving itself like it usually does, or there are too many reminders of the ‘c word’ on TV, or people are talking about it… it’s never really gone. There is a lot more I could say about my experience and my feelings about it but this post would be so long so I’ll stop now. I’ll just say it’ll never be old news to me. It’s just not.