Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)

Category: Cancer Survivorship (Page 1 of 11)

Bumpy’s Eviction Notice is Served!

Is it weird that I’m kind of excited about having my breast lumpectomy? My surgery (wide local excision / lumpectomy) is set for early March and I am glad to have the beginnings of a plan. We still don’t know if I will need further surgery. Radiotherapy seems to be a given, and possibly chemo, but for now it’s good enough to know that we’re getting rid of Bumpy (I named the lump because I don’t like calling it a lump) hopefully with nice clear margins. They’ll take lymph nodes as well to make sure there’s nothing there too. The surgery is a day case hopefully, but I’m prepared in case they say I need to stay overnight. Then I’ll have a couple of weeks off work and my PhD to recover. Then I guess I’ll have an appointment to discuss how it all went and next steps, and by that time hopefully the genetic test results to check for BRCA will be back too.

I’m feeling very positive and proactive and ready. I don’t know if it’s because this surgery is small compared to the ones I’ve had before. I’ve been given all my leaflets and paperwork so I spent some time yesterday looking through it all. There is a leaflet on arm stretches for after surgery but it suggests actually starting the stretches before surgery, so I’m trying to remember to do them every day, and actually felt quite good after doing a little stretch this morning.

I’ve joined a local support group on Facebook and signed up to their email newsletter to hear about what they have going on. This time, I’m planning to take advantage of any support I can. They do a run around the local park, pilates, reiki, support group meetups… it sounds really good. I’m restricted by where I’m prepared to drive to (hello autism) so realistically I won’t be going to everything, but it’s good to know there are options.

And of course I’ll keep trying to write about what’s going on here. I’m doing PhD work when I can. Some days it just doesn’t happen because I have to go to appointments or call hospitals and my head just isn’t in it – I’ve been doing plenty of admin trying to make sure everyone involved in my care knows what’s going on. Plus I had to cancel a full body MRI appointment, which is part of my regular surveillance, because it’s two days after my surgery so it needs to be rescheduled.

Anyway, I’m trying not to think about too much at once at the moment – one thing at a time. But yes, number one priority is getting ready for surgery and getting this all sorted. My body and wellbeing is the main project and other stuff is secondary.

Cancer #4 – Breast Cancer Diagnosis

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.

Adventures in Annual Endoscopies

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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On joy, on Christmas, on length

Crying while listening to “Santa Claus Is Coming To Town” is an act of defiance.

Though it does feel a bit strange sobbing as the radio is telling you to “turn up the festive feelgood”. Maybe because the real act of defiance is putting the Christmas radio station on as soon as it starts in late September.

But I want to and I won’t apologise for listening to Christmas music too early. Christmas does come earlier each year but I’m going to embrace it. Because Christmas brings me so much joy and I want to squeeze as much joy and Christmas out of the year as I can, to keep it going for as long as possible. Life is just too difficult not to get as much joy out of it as you can manage.

Why is life difficult? Because while I’m thinking about the approach to Christmas I inevitably end up wondering if I will have medical appointments between now and then. If the possibility of having cancer a fourth time might crop up between now and then. If any of my Christmas plans might be scuppered by appointments or fears or procedures.

So I’ll listen to Michael Buble in September and start my Christmas shopping before Halloween and watch Christmas movies in October and I won’t apologise for it. Life literally is too fucking short for that.

What’s it like having a capsule endoscopy and gastroscopy?

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.

 

Well this is all a bit “Maslow’s Hierarchy of Needs”

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.

I have CMMRD – this is not news, but it is, but it isn’t

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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Living With Lynch Syndrome: My Life Isn’t Normal, So Why Pretend It Is?

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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