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

Category: Cancer Survivorship (Page 1 of 11)

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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Health Professionals, Please: No False Hope, But No False Panic Either

After waiting two months (and chasing twice) for my CT scan results, I finally got a phone call this week. Historically, I’ve bought into the idea that “no news is good news” because surely if it takes that long to get the news, it’s not urgent and ther’s no problem. And perhaps that’s true – it’s borne from the desire to make some sense of the medical world, to pre-empt news before it comes, to figure it out so that the wait for confirmation is less excrutiating. However, on this occasion, I have been made to question the theory that no news is indeed good news.

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Cancer Scribblers Introductory Video

I’m launching a new series of webinars called Cancer Scribblers, designed to help people living with and after cancer, and caregivers, to get into writing, hone your craft and share your story in your own way! This first video aims to give you a flavour of what the webinars will be like and to introduce you to the world of writing about cancer. As well as explaining what to expect from future webinars, in this video, I also explain how we can practise self-care when writing, and introduce some of the writing forms and routes to publication.
Please do let me know what you think of the plans so far!

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