Sam Alexandra Rose

On joy, on Christmas, on length

September 24, 2023 / writersamr / 0 Comments

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.

the CMMRD book launch video

September 17, 2023 / writersamr / 0 Comments

In case you missed it, here is the video from my YouTube live for the launch of “the CMMRD book”!

Buy the book on Amazon in paperback or on Kindle now.

Out now: the CMMRD book!

September 2, 2023 / writersamr / 0 Comments

the cmmrd book: a mismatch memoir and guide

Memoir and guide, released September 2023

I am pleased to announce the publication of my latest book, the CMMRD book!

About the book

“CMMRD may be rare, but everyone I know has met someone who has it.”

While on average people with CMMRD get their first cancer diagnosis at just 7.5 years old, Sam Alexandra Rose is beating the odds in her mid-thirties. But it comes at a price, with three cancer experiences and a whole lot of fear and trauma to sort through.

Part memoir, part guide and with a little poetry thrown in, this book illustrates what it’s like to live with a rare genetic condition and significantly increased cancer risk.

This is a book of denial, hope and eventual acceptance, ideal for families wanting to know more about a CMMRD diagnosis and for healthcare professionals looking to better understand the patient experience.

Buy now on Amazon in paperback or on Kindle!

Coming soon: the CMMRD book!

July 28, 2023 / writersamr / 0 Comments

I’m so excited to announce that my new book will be published on 2nd September 2023! It’s called the CMMRD book: a mismatch memoir and guide and it’s all about my ultra-rare condition CMMRD, what it is, what it means for me and others who have it, and how I am learning to come to terms with it. It’s the first book all about CMMRD just for patients – and maybe even the first book about CMMRD, ever. Here’s the blurb:

“CMMRD may be rare, but everyone I know has met someone who has it.”

Part memoir, part guide and with a little poetry thrown in, this book illustrates what it’s like to live with a rare genetic condition and significantly increased cancer risk.

“a humane and helpful navigation of a difficult subject for a difficult journey… this book is a non-medical person’s true north guide through Lynch syndrome and CMMRD” – Lynne Dunn, CEO of Bowel Research UK

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

April 1, 2023 / writersamr / 0 Comments

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.

Goals For 2023

December 31, 2022 / writersamr / 0 Comments

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.

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

June 12, 2022 / writersamr / 1 Comment

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

May 28, 2022 / writersamr / 0 Comments

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.

I Won Second Place in a Writing Contest!

March 18, 2022 / writersamr / 0 Comments

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!