By Sam Alexandra Rose
Sam guest blogs regularly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch syndrome.
One afternoon in 2018, I found myself explaining my upcoming cancer surgery to my chatty masseuse while she kneaded the knots in my back. “It’s because I have Lynch syndrome,” I said. “It’s a genetic condition that makes people more likely to get different types of cancer.” I felt her hands stop as she replied in surprise, “Oh my gosh. How do you cope with that? I don’t know how you get out of bed every morning.”
I can’t remember how I responded to that, but I do remember trying to decide how her reaction landed for me. I found myself scrutinising my daily life – is my existence really as difficult as she had made it sound, or am I muddling along just fine?
The reality is that even if it were difficult for me to surface from my blankets every day, I don’t have much of a choice. That’s the thing about the medical world and the rest of the world – it all keeps on going and I have to as well.
One of the things I find most difficult about having Lynch syndrome is balancing that with all the ordinary things I still have to attend to, because the world doesn’t stop for cancer. Having Lynch syndrome (and previous diagnoses of bowel cancer, uterine cancer and duodenal cancer to boot) means I have regular screening to detect any new cancer early. I have a gastroscopy, a capsule endoscopy, a brain MRI and a full-body MRI every year. I also have a flexible sigmoidoscopy every two years, which is like a colonoscopy but for my internal pouch, which was formed during my colostomy reversal. I currently have yearly CT scans too as follow-ups for my last surgery, and I see my consultant every six months. I do believe it’s good that I know I have Lynch syndrome because without this screening, my duodenal cancer would have been missed or picked up much later. But it’s still very anxiety-inducing and my belly does a little flip every time my phone rings or a letter from the hospital comes through the door. Fear of recurrence and anxiety brought on by medical trauma are huge obstacles to deal with so frequently. And that’s just the start of the screening process – then there’s the waiting for the day of the scan or test, going to the hospital and having the procedure, and waiting for the results. Many times, the test results will come back fine, but sometimes I might need to go for other tests to double-check something and the cycle starts again. While all this is going on, I’m still going to work, studying for my PhD, seeing friends and family, doing the food shop, and all the rest of the things that still must continue despite Lynch syndrome. Never mind getting up every morning – that’s the easy bit in comparison to everything else!
It has taken a long time to come to terms with the Lynch syndrome diagnosis I received back in 2011, and I am still finding work to be done in terms of improving my mindset and working through complex emotions. The fact that I inherited Lynch syndrome from both my parents, which increases my cancer risk even further (known as CMMRD), was something I couldn’t bear to think about until very recently. Lynch syndrome has been a huge monster hovering over me that I could hardly look at, and the more I avoided looking at it, the bigger it seemed. It takes a lot of effort to be able to look at it head-on, but the more I do that, the smaller it gets.
Since the conversation in 2018 with my masseuse, the question “how do you get out of bed every morning?” has morphed into a question I pose for myself: “How do I live well with this?” I used to wonder if I was living with Lynch syndrome with an air of defeat and resignation – “I just have to live with it”. Or if I could live in spite of it, thriving despite the diagnosis and even often forgetting about it, or laughing in its face. And I wondered which of those I should be doing – which is the “correct” way to do survivorship? I’ve settled on trying to live with it in an almost amicable way. Not ignoring it, resenting it or even overcoming it, but rubbing along with it and collaborating with it. I’m co-habiting a space in which it doesn’t take up so much room that I’m suffocated by it or I loathe it, but also in which its significance, its impact on who I am and what I do, is not overlooked. It’s a tricky balance to strike.
Having said all that, my cancer and Lynch syndrome experiences have come with some – dare I say positives? I’ve been able to connect with people who have had similar experiences, and I’ve had the privilege of being able to help some of those people through writing about my diagnosis. Plus, if anyone around me needs to have the same scans and tests for any reason, I am a fountain of knowledge about the processes, which makes me feel useful. Would I rather not have Lynch syndrome, given the choice? Yes, of course. But the fact is that I do have it, and I would much rather know about it than have no clue – otherwise I may not be here today at all.