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

Category: My Non-cancery Life (Page 1 of 5)

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.

10/1/25 – Diagnosis Day

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?

Continue reading

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!

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:

Continue reading

« Older posts

© 2026 Sam Alexandra Rose

Theme by Anders NorenUp ↑