Category: Cancer Survivorship (Page 1 of 11)

I was assuming that my autism diagnosis was the only diagnosis I had this month but 2025 has started with a bang! On Friday 3rd January I found a painful lump at the top of my left breast. I got in touch with my GP on the Monday, who put me on the two week wait cancer pathway. I had an ultrasound and biopsy on 17th January at the hospital, and on Tuesday 28th I had a follow-up appointment and was told I have a small, 11mm lump which is early stage, grade three breast cancer.

So here we go again! Apparently, it could well be linked to my CMMRD. I guess it’s difficult to know whether breast cancer is a risk with CMMRD because people with this genetic risk tend to get cancer as children, so many may not survive into adulthood to also get breast cancer. That’s my logic, anyway. They have done a blood test to see if I have BRCA, but I think even if that comes back negative there may be a genetic risk due to CMMRD. (For the uninitiated, CMMRD is constitutional mismatch repair deficiency, which I have because I inherited Lynch syndrome from both parents.) I had the blood test and also a mammogram on 31st January, and an MRI on 6th February. I have an appointment with the surgeon on Thursday 13th, and I’m hoping that will be when they tell me what the plan is. So everything is moving quite quickly, which is good. I just want to get Bumpy (I named the lump because I don’t like calling it a lump) out and get on with it.

Meanwhile, my mum is currently in hospital after an operation due to lung cancer, and I’m trying my best to plod on with work and my PhD, for which I’m now in my final year. I know I’ve written out all the facts so far and people are like oh you’re coping so well, you’re inspiring, so positive etc. I am not strong or positive or inspiring, I’m a fucking mess and spiralling internally at any given moment. I’m trying to be more mindful and in the moment so that I don’t start thinking about all the what ifs and stressing about work and all the things I have to do and how unfair it all is and how it might affect our planned holidays and travel insurance and all the rest of it. I’m not okay and I’m freaking out. Oh and I’ve had to come off my HRT in case that’s a risk factor. It’s a good thing it’s winter as the hot flushes haven’t been too bad so far but may well come back with a vengeance.

I suppose it’s all fodder for the next book?! Speaking of which, if you’d like to do something to support me during this shitshow, it would make my day if you bought one of my books or shared them with others – I have two memoirs on Lynch syndrome and CMMRD, and two poetry collections.

Anyway, I’m just trying to carry on as normal but also wishing I could hide in bed all day and forego all my responsibilities entirely. But I still need to earn money and get my studies done and life doesn’t stop for cancer. Which is annoying because cancer is basically a second job with all the admin I have to do making sure appointments are happening as they should and all my various teams in different hospitals are talking to each other. My other usual checkups are due so I need to make sure everyone knows what’s going on and surgeries and checkups can work around each other. My last capsule endoscopy found tiny polyps in the small bowel so I’m on a six-monthly appointment schedule for that and scared that will be cancer too. I’ve had two different cancers at the same time before and I think that’s what’s currently scaring me the most. It’s all just too much. Breast cancer, surgery, potential treatment after that, bowel/gastro checkups, brain and full body MRIs, Florida holiday under threat, potential increase in travel insurance costs, work, PhD studies, and day to day life in general. All through a late-diagnosed autism lens! It is too much.

Oh hi there! I know it’s been like a million years since I blogged properly or regularly, and when I first thought about updating the internet with my medical escapades today, my first instinct was to put a post on Twitter and Instagram. Doesn’t bode well for the long-form blog, does it? But the more I thought about it the more I thought I had to say, so here we are.

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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.

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This is the transcript for my talk on the Wisdom app. Listen to the talk 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.

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