Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)
At my most recent appointment to have my capsule camera placed via gastroscopy, I decided to do a video diary of the process to show everyone what it’s like. Come with me as I make up my bowel prep, decide what to wear for the appointment, investigate the recording equipment, take it all off at the end of the day and debrief. It may be just a couple of hours at the hospital appointment but it’s more like a three-day saga every year! Watch the video below.
Happy introspection week, as I like to call it! We’re here again in the no man’s land between Christmas and New Year, and it’s time for me to take a look at my goals for 2022, what I achieved, and the goals I’d like to set for 2023.
I could finish my PhD
I can feel fulfilled by my career
I could get married and we could adopt a kid
We could get two pet cats
I could live to be 40, 50, 60, 70, even 80
But I will never stop having CMMRD
We could win the lottery and that wouldn’t change my yearly tests – not the fact I have to have them or the outcome of them.
I could have all the good fortune and success in the world and that won’t reduce my cancer risk, it won’t alleviate my anxiety, it won’t change my health.
And I guess on the surface, this comes from a place of despair, of knowing my health worries won’t end until I die. And that might make everything seem a bit pointless.
But beyond that, on the flip side, there is acceptance.
If I can accept this state of affairs,
if I can realise what won’t change and take solace in what will,
if I can come to terms with my condition and what’s required to keep me alive and well,
if I can take this as part and parcel of my life –
maybe fulfilment and success are possible, and maybe peace of mind is that little bit more attainable.
Twelve years ago today I had an excruciating colonoscopy which unearthed eighteen polyps in my bowel, which led to the diagnosis of bowel cancer, which led to the removal of my colon, and genetic testing which confirmed a diagnosis of CMMRD. Twelve years later, I’m still working on coming to terms with that.
I’ve spent the last ten years or so writing about cancer and most of those years also writing about Lynch syndrome. But I don’t have Lynch syndrome. Or at least, I don’t just have Lynch syndrome. I even wrote a book all about having Lynch syndrome, even when technically that’s not what my condition is. I’ve been holding back or I’ve been in denial or I’ve been wrong.
This happened a little while ago but my prose piece has just been published, so I can now reveal that I won second place in a writing competition! The contest was Flatten The Curve from STEMag, an interdisciplinary arts and humanities publication.
The piece I entered was a “found prose” piece, “Decommissioning of the Womb”. I assembled this piece by putting together found writing on the decommissioning of nuclear reactors and oil platforms, and reframing them into prose about having a hysterectomy. You can read it here. Many thanks to the editors for choosing me – I’ve never won a prize for my writing before!
This is the transcript for my talk on the Wisdom app. Listen to the talk here. Continue reading
This is the transcript of a talk I gave on the Wisdom app. You can listen to it here. Continue reading
Talking about my CMMRD (constitutional mismatch repair deficiency – a rare type of Lynch syndrome that greatly increases cancer risk) on the Wisdom app yesterday made me feel like I was finding out about it all over again. Actually, no – it feels like I am finding out about it for the first time because that part of having Lynch Syndrome is something I have never properly addressed and have always tried to ignore.
I did a talk on the Wisdom app explaining what Lynch syndrome is and my personal story. You can listen to it here, or read the transcript below.
It’s that time of year again! I love this period in between Christmas and New Year when nobody knows what day it is and I don’t have to do anything at all. What I do usually decide to do is take a little time for reflection and introspection, and part of that is thinking about what I’ve achieved this year and what I’d like to do in 2022. So let’s go!
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