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

Category: My Non-cancery Life (Page 1 of 4)

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!

Goals For 2023

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.

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Notes On A Name Change

I have something exciting to announce – I’m changing my name! Okay, so it’s not a massive change, and I’m not making it official yet, but it’s very cool and I’m excited about it.

I’m going from Samantha Rose to Sam Alexandra Rose, because:


  • I don’t like Samantha and nobody calls me that anymore anyway, so I might as well drop it to Sam officially
  • I’m not a huge fan of Sam Rose as a full name either (perhaps because sometimes people use it as if it’s a double-barrel first name but they’re actually calling me by my full name which feels unfamiliar and unfriendly)
  • My full name is only really used at medical appointments (and previously at school), so it doesn’t have great connotations for me
  • Alexander was my brother’s name
  • Alexandra is super pretty and makes me feel pretty, too (and maybe weirdly more like an actual adult, because the above connotations from school and hospitals are kind of infantalising?)


I get a real kick of seeing my new name in various places where I’ve changed it already, as opposed to looking at my old full name, which feels quite negative. I will change it by deed poll at some point (probably when I have another reason to change my name), but for now it’s enough to be changing it gradually and unofficially. If there’s something you don’t like but you can change it, why not do it? Especially if it makes you feel good about yourself. Our names are our identities and they are important, and this feels more “me”.

I actually used the name Alex as a middle name as a kid when I was making books and fake newspapers out of coloured paper and felt tips, so this isn’t an entirely new idea!

I’m planning on exploring names and identity in my PhD work soon, and how that all links in with cancer and identity – particularly who I am outside of being a cancer survivor – so this is all part of something exciting.


Sam Alexandra Rose, signing off!

Mr Postman / Mr Sandman

In light of the news this morning that clinically extremely vulnerable people will start to get their letters this week inviting them to get the covid vaccine, I wrote this little parody – to the tune of Mr Sandman, of course:

Mr postman, bring me a dream (bom, bom, bom, bom)
Make it an invite for the covid vaccine (bom, bom, bom, bom)
Say it will reduce my risk of exposure (bom, bom, bom, bom)
And that the pandemic will soon be over

Postman, I’m vulnerable (bom, bom, bom, bom)
And all this shielding can feel miserable (bom, bom, bom, bom)
Please help me get the vaccine
Mr Postman bring me a dream

Bom bom bom bom bom bom bom bom,
bom bom bom bom bom!

My Goals For 2021

I’m slightly late with it, but it’s that time of year when I get all introspective and retrospective and all the spectives, really, and think about what I achieved in the last year and what I’d like to achieve next year/this year. It’s been difficult to get into that headspace this year – even though the time between Christmas and new year is usually my most productive and thoughtful time, it hasn’t come naturally, probably because – well, look at the state of this year.

Regardless, I’d like to have a little think about it, look at my previous goals and set some new ones. So this is what I said I wanted to achieve in 2020:

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31st December 2020

standing at the back door accommodating
winter in gusts, the clear sharp moon in my throat
and my friends on a screen on my coffee table
but I can’t hear them over the bangs and they
have left their seats already to watch their own
displays. I had run upstairs with Peter and counted
again, at least eight of them, like I did on November 5th.
It’s the first year I didn’t hear a countdown – I always
forget the Hootenanny ignores the coming of the
new year, carries on, and the TV was muted anyway,
but this time, with just the two of us in the house,
at least in flesh, we did not count but we did kiss late
and the bang and crack and light that had been going on
since daylight now overtook the house, everyone’s house
as our web conference brought six of us together in stereo.
Amidst the madness I was grateful for the fireworks blurring
one year into the next because the expectation would have
been too much weight to place on one count, on ten numbers
standing separate and fragile, so instead the community
decided we would have a gradual bringing in of cheer, a blurring
of time, as it had been all year, and watching all the displays from
the back door, the clear sharp moon in my throat made me hopeful,
each blast of light and sound proving that despite everything,
so many of us were standing upright on this earth
and celebrating, still finding some glimmer of joy or hope
and throwing it in the air like a penny in a fountain.

The silence isn’t broken, it’s fractured

I accidentally extended my own lockdown by fracturing my ankle so now moving off the couch to go anywhere is a hassle slightly reminiscent of recovering from cancer surgery. It hurts less than it did a week ago, though.

Hi! It’s been ages, hasn’t it, but at the same time it’s hard to tell because the world is on fire.

I’m going to be on my local radio station on Friday night, around 7.40pm on BBC Northampton, reading part of a lyric essay and talking about writing and my piece, which of course is about my usual subject.

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