24 November 2022

On the first day of Christmas, Lynch syndrome gave to me… another capsule en…dos..copy

I love Christmas. I’ve been listening to Heart Xmas radio station in my car since mid-October. I had my first Christmas shopping trip on 4th November. And it was on that day that I received a call from the hospital inviting me to go for another capsule endoscopy.

I’d already had a capsule endoscopy in the summer, but it wasn’t successful because the camera didn’t get a clear enough picture. I was half expecting to have to do it again, but I had been ignoring it and hoping it wouldn’t happen until the New Year.

December is time that should be protected in my eyes. Not only is it Christmas, and all of the events that go with that – shopping, parties, meals out – it’s also my birthday month, and as far as I’m concerned, it’s my month, my season.

You may remember from my previous blog post on the subject that my capsule endoscopies need to be placed via gastroscopy, which for anyone who’s not had the dubious pleasure, means camera down the throat and is a pretty unpleasant experience. Add to that, my annual CT scan is also due. So when I had the call from the hospital on 4th November with a date for the endoscopy two weeks later, you can imagine my displeasure that this about to happen at a time when I should be happy and excited.

Cancer is huge. We know this already, but it has been made even more obvious to me during the last couple of years while working on my creative writing PhD. At the beginning of my PhD, I thought I would spend the next six years writing about my cancer experiences, because the goal was to find out how creative writing helps me deal with the emotional effects of cancer survivorship.

But I had already been writing about cancer for many years, and it soon occurred to me that I didn’t want to just write about that. My studies led me to think more about my identity. Cancer takes up so much room in my life and having constant check-ups due to the increased cancer risk that comes with Lynch syndrome means I often feel in fight or flight mode.

I’m caught bouncing between or trying to balance two worlds – the world of hospitals and cancer threats, and the “normal” world of going to work, having a social life, and everything else daily life brings. I wanted to write about who I was outside of cancer so I could try to reconnect with the identity I felt I had lost.

So in my mind, I could either write about cancer, or I could write about this other world – me, my normal life, and everything in it. That means on the one hand there is cancer, and on the other hand, there is non-cancer. I realised that cancer, when I visualise it in my head, is as huge as everything else in the world combined. Isn’t that crazy? I don’t want cancer to feel as massive as everything else put together.

And that’s what I’ve been thinking about recently. Coming up to Christmas, I want Christmas to feel huge and the festivities to be my main focus. I want cancer and the hospital to be some tiny blip on my radar.

To help with that, I’m going to draw it – first, a picture with two equal sized boulders to represent cancer and “everything else” the way I’ve visualised it in the past. Then I’ll draw my preferred visualisation – a big Christmassy boulder (or a bauble, perhaps), a slightly smaller “everything else” boulder, and then a tiny pebble marked “cancer”. I’ll put it somewhere where it can remind me: hospital appointments are just a little blip, and if I stay mindful and in the moment, I can enjoy the festive season, with fear of recurrence simply being stone in my shoe, instead of feeling like Indiana Jones in Raiders of the Lost Ark. Happy Christmas!