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

Author: writersamr (Page 1 of 44)

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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2023 Work Roundup!

Happy New Year! Since this time of year is always a period of introspection for me, I thought I’d do a little roundup of what I’ve done in my first full year as Patient and Public Involvement Manager at Bowel Research UK:

– Embarked on a complete career change from digital marketing to patient and public involvement (PPI) within bowel disease and bowel cancer research
– Learned a lot about patient involvement and the fascinating research being carried out
– Co-ordinated focus groups and shared involvement opportunities
– Began developing a business case for this part of the charity
– Put together a valuable committee to help direct our PPI work
– Organised and hosted the Big Bowel Event virtual patient conference
– Created, hosted and launched the Can I Butt In? podcast
– Published a book of poetry by bowel cancer and bowel disease patients and their families

Not to mention travelling more, especially on my own, navigating trains (when they weren’t striking), getting to know London a little better and attending my first conference. As an introvert with social anxiety working in a new field, I’m gently stretching my comfort zone on my own terms. Not to mention balancing working on my PhD at the same time!

I love the freedom and responsibility my position gives me but also that I work within a lovely, supportive team where we’re always ready to pitch in, share ideas, provide feedback and help each other, as we can’t do any of it alone. We all share and work towards the same important vision.

I’m looking forward to building on this experience in 2024 and seeing what else patients, researchers and charities can achieve together!

Goals for 2024

Happy what-day-is-it week! It’s time for my annual tradition of goal-setting and looking back on my goals for this year, so let’s go.

Goals for 2023

  • Progress to the fifth year of my PhD
    • I did this!
  • Pass probation in my new job
    • I did this! I’ve been in my job as Patient and Public Involvement Manager at Bowel Research UK for almost a year now.
  • Speak regularly on the Wisdom app
    • I did a bit of this but I abandoned it recently. The app changed so that only people with Top Member (or whatever they call it) badges can do talks. I am one of those people but I’d rather just do my own talks than have guests, and we’re encouraged to have guests on now since not everyone can start their own talk. So I’m less fussed about this at the moment.
  • Increase my confidence travelling alone
    • I did this! I feel like a pro at getting the train to London now and I’m getting to know different parts of the city through walking to different meetings and getting the tube.
  • Continue to write and be published
    • I’ve definitely continued to write for my PhD, and I wrote and self-published the CMMRD book! I didn’t have poems published in any literary magazines as I’ve been concentrating on my studies.
  • Blog here more regularly
    • Didn’t do this so much!
  • Take some trips
    • We went to Florida, the zoo, Gordon Ramsay’s Street Pizza place in London, Great Yarmouth and Center Parcs.
  • Work on accepting my genetic condition and the tests and risks that brings, and use mindfulness to find peace instead of hopelessness
    • Last year I said “This is a biggie, and I know I’ll be cursing myself this time next year because it’s immeasurable!” And yes, this is a bit of a vague goal. I think writing the CMMRD book really helped, though, so I’m counting it as a win.

Goals for 2024

Here’s what I would like to do in 2024:

  • Register my intent to submit my PhD (by the end of the calendar year to actually submit in 2025 at the latest)
  • Continue to expand my comfort zone (e.g. speaking at a conference, networking)
  • Advocate for myself in the healthcare system ( since my local hospital is currently doing a terrible job at communicating with me – I can’t let my screening slide)
  • Spend regular me-time out of the house, e.g. doing PhD work, having lunch and shopping on Friday afternoons as part of my routine

I can’t think of anything else I want to do this year, so it’s a much smaller list. But the main thing I want to concentrate on is my PhD, so I’m not setting goals around other publications at the moment. If I think of other things, I’ll add them later!

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.

Out now: the CMMRD book!

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!

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.”

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.

“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?

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.

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