Sam Alexandra Rose

Category: Cancer Survivorship

  • In the dark, I think I have hair

    In the dark, I think I have hair

    I had a dream last night that I might have cancer again. Of course, it was a dream, so it made no sense – I received a letter saying I had a polyp where my womb used to be. My friend was reading it while we were walking around a supermarket and he seemed much more concerned about it than I was. I suppose the occasional dream about recurrence is just part and parcel of CMMRD these days. This was one of the tamer ones.

    It reminded me that since my hair fell out during chemo, I’ve had a lot of dreams about my hair suddenly being its usual long and flowing length again. Especially in the early days of having super short hair or no hair at all, I’d always wake up disappointed. But also, I’d get a bit confused in the middle of the night thinking I could feel my hair on me. And this is the latest poem I wrote, just two or three weeks into chemo last year. I thought I’d share it here now. And I will write new poems soon! Let’s just get this viva done and dusted first (I have a date for it and it’s not long away!) And my hair is doing very well at the moment, too.

     

    In the dark, I think I have hair

    As I rise out of bed to go to the toilet,
    my arm muscle twitches to pull my hair
    from out of my pyjama top –

    but it’s just my chemo cap resting
    against the nape of my neck.

    When I did have hair,
    so much of the thick stuff would get in the way,
    increasing my hot flushes.

    How I’d pull it all upwards away from my clammy neck,
    splaying it across the pillow for a cooler sleep.

    But it was far more annoying when it started to shed liberally,

    when I’d find strandson my shoulders;in my drink;on the floor.

    I try to be grateful for my cool neck
    and my clean floorboards
    as my hand rises to flip my hair on the way to the bathroom
    and simply brushes empty air instead.

    Written on Friday 16th May 2025 at 12pm

  • PhD Viva, Future Books and CMMRD Advocacy

    PhD Viva, Future Books and CMMRD Advocacy

    Hello! I think it’s time for a little update, as exciting things are on the horizon.

    Firstly, I submitted my PhD thesis a little while ago, and my viva date has now been set! For the uninitiated, a viva is the final exam of a PhD. It’s basically a Q&A with two examiners discussing your research, and at the end they let you know if you have passed with minor, major, or no corrections, or failed. So after having a good break from my thesis, I’ll be revisiting it soon to start preparing. I hope I’m impressed with my writing and not cringing at it!

    Once my PhD is done, I’ll be looking at publishing the creative writing portion of my thesis, which is a poetry collection. I’ll also be looking at different ways to share my findings with the world, so I’m currently very open to podcast, speaking and writing opportunities around that.

    Beyond the PhD, I have an idea for another book, which has been brewing for nearly two years, but I’m not yet sure what form it will take. And I’m also keen to get involved in research into CMMRD. I’ve had some interesting conversations recently, and I think the future of treatment for CMMRD is really exciting. I’d love to do more around helping to shape research, and also some patient advocacy around CMMRD, Lynch syndrome and cancer. This might take the form of sharing my story in various ways, at conferences and events, through podcasts and radio, and, as always, through writing.

    So there are lots of opportunities ahead, I think; it’s just a case of finding them. I’ll be sharing updates along the way, especially about my new book. So if you like my work, particularly if you enjoyed my previous books, please sign up to my newsletter to stay updated. If cancer advocacy with a sense of humour and a poetic lean sounds intriguing to you, you’re in the right place!

  • Post-chemo Hair Time-lapse

    Post-chemo Hair Time-lapse

    Hello! One year post-chemo, here is my weekly hair time-lapse. I took a photo every week (and am still doing so ) to see how my hair was progressing each week and give me a bit of hope for being a long-haired girly again. I haven’t had it trimmed or styled at all – I’m not a short-haired girly, I’m just passing through. This bus isn’t making any stops. So these collages are for me, but also for anyone who is anxious to see their own hair coming back and what the growth rate might be like, as I know that was something I was looking for after I finished chemo and was wondering when it would all kick in and how fast it would grow. Obviously everyone is different, hair is different styles and textures and so on, but hopefully this is helpful for someone. My pics start at week six because not much happened before then!

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  • Goals For 2026

    Goals For 2026

    I was going to start this blog post by saying that every year in December, I set goals for the next year. But it seems like I didn’t do that here last year! And I wanted to shake it up a bit this time, anyway.

    In previous years, I set maybe ten goals – some for academia, some for travelling, and whatever else I wanted to do. Since I had breast cancer surgery, then chemo and radiotherapy this year, December feels very much like a finishing line and I’ve spent the final couple of weeks of 2025 getting my breath back and repeating to myself that we made it. So the bar for the near future is pretty low. The only real goal I have for 2026 is to finish my PhD. And perhaps to take it easy and not be hard on myself. It’s understandable that my expected timeline for my PhD has been pushed back a bit. So I’m trying not to be too disappointed or even ashamed of that. I still worked on it this year despite cancer treatment. I’ve done really well. And I’d like to see it through to the end during this next year. By not setting other goals, I’m making this the priority. Of course, there are other things I hope will happen, like holidays, and I’ll be sure to take breaks. I’m also not going to set goals around things I can’t control. For example, staying healthy – that’s not a goal, it’s a hope. I can’t control it, so it isn’t featuring in my outlook for the year. Whatever happens will happen. I just want to finish my PhD and find calm and joy and self-care in between.

    While I’m not setting a goal for it as such, something else I’d like to do is spend less time on social media and more time doing things that don’t involve screens. A friend gave me a The Office crochet kit to make my own Jim and Pam, but I’ve never crocheted anything before. This week I started learning and now I can make a sort of lopsided square-ish thing, which is more than I could do a couple of days ago. It’s been really fun doing something new with my hands. The same friend gave me a Magic Library to build, and I have a couple of new jigsaw puzzles too, as well as more books to add to my TBR pile. I have colouring books and journals and things as well, so I could make myself a little repository of things to do that aren’t scrolling. And I’m going to continue exploring autism and trying to lean into my wonderful, weird self. Of course, there are plenty of things to do that involve screens and are intentional, that I plan to continue. Like watching my favourite YouTubers and playing The Sims. No need to banish screens completely. I think “intentional” is a good word. Maybe my word for the year. Living with purpose – to complete my one goal for the year, and to find the joy in that and in resting and playing in between. Some years, I’ve felt fearful of the new year. I thought this time would be the same, remembering that in early January 2025 I found the lump. But for reasons I don’t see the need to examine too closely, I feel hopeful.  Let’s take it easy, one thing at a time.

  • Life Update Post-Breast Cancer Treatment

    Life Update Post-Breast Cancer Treatment

    Hello, I have no idea if anyone comes here anymore, especially when I don’t frequent Twitter anymore to direct people here. But since I haven’t posted since February and an awful lot has happened, I thought it was about time. I’ve actually been thinking about doing this for a while, and true to form, here we are in the last couple of weeks of the year, slowing down and catching up.

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  • Bumpy’s Eviction Notice is Served!

    Bumpy’s Eviction Notice is Served!

    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

    Cancer #4 – Breast Cancer Diagnosis

    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.

  • Adventures in Annual Endoscopies

    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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  • On joy, on Christmas, on length

    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.

  • the CMMRD book launch video

    the CMMRD book launch video

    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.