Sam Alexandra Rose

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

Bumpy’s Eviction Notice is Served!

February 16, 2025 / / 0 Comments

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

February 9, 2025 / / 0 Comments

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.

10/1/25 – Diagnosis Day

January 10, 2025 / / 0 Comments

Warning: Unedited gibberish incoming!

I never thought I’d be writing the word “diagnosis” while feeling something positive towards it, but here we are. I am not sure what I’m feeling really, but I thought it would be a good idea to write about it, and why not resurrect my wilting blog while I’m at it?

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Adventures in Annual Endoscopies

June 21, 2024 / / 0 Comments

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!

December 31, 2023 / / 0 Comments

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

December 27, 2023 / / 0 Comments

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

September 24, 2023 / / 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.

Out now: the CMMRD book!

September 2, 2023 / / 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 / / 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.”

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

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