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

Category: Cancer Survivorship (Page 1 of 10)

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!

What I mean when I say I have a checkup

What I say: I have a hospital appointment

What other people hear: She’ll be there for a couple of hours

What actually happens: Hospital on Friday for covid test; spend Saturday panicking; no food from Sunday 9am until Monday 4pm; Sunday evening drink two litres of bowel prep; at hospital for 9am Monday; actual endoscopy(ies) at 10.30am with sedation; another 30-60 mins in recovery, discharged around 12pm; home at 12.30pm. But hang on, it’s a capsule endoscopy too, so no drinks allowed until 2pm; no food until 4pm (a total of 31 hours without food) then waiting for the capsule to *evacuate*; panicking when it doesn’t in case you need an x-ray to check if it’s still there, or the test might need to be retaken if there wasn’t enough footage and you have to go through the whole thing again, or need surgery to get it out; then finally relief when it does come out right before bedtime and the recorder thankfully hasn’t run out of battery; worrying still though in case the bowel prep wasn’t good enough for clear pictures and the test needs to be redone, or if they find cancer again; then work in the morning (but only from home as you had sedation and can’t drive again yet), where you need to be a productive human being and ignore it all, while awaiting the capsule endoscopy results.

Welcome to cancer. That was my “weekend” – how was yours?

On the plus side, the gastroscopy found nothing abnormal. Hoping for good results from the capsule endoscopy, too. That would make up for the sore throat and jaw and the embarrassment of chatting absolute nonsense to the nurses while sedated. And getting bile in my hair.

Creative Writing Webinars For Cancer Survivors – Sign Up For Updates!

Creative writing webinars for cancer survivors

I’m starting a new webinar series on creative writing! It will be aimed at cancer patients, survivors and caregivers who would like to write through their experiences.

The series will include topics such as poetry, memoir, essays, blogging, body image, getting published and more.

The series is still in the planning stages right now, but if you would like to receive more information, please fill in the email signup form. Make sure to tick the “webinars and workshops” checkbox at the bottom.

Additionally, if you know anyone who may be interested in this webinar series, please send them the link to this post so they can sign up to find out more.

Creative Writing Webinars For Cancer Survivors

I’m planning some webinars/workshops on creative writing for people living with and after cancer. Topics might include writing poetry, writing your memoir, getting published, blogging, self-care, exploring identity, exploring body image and more.

If this interests you, it would be extremely helpful if you could fill in my survey to let me know the types of online events you’d like to attend. Please also share the link with anyone you think may also be interested. Thank you so much in advance!

Here is the survey link.

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