Sam Alexandra Rose

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

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.

I have CMMRD – this is not news, but it is, but it isn’t

Twelve years ago today I had an excruciating colonoscopy which unearthed eighteen polyps in my bowel, which led to the diagnosis of bowel cancer, which led to the removal of my colon, and genetic testing which confirmed a diagnosis of CMMRD. Twelve years later, I’m still working on coming to terms with that.

I’ve spent the last ten years or so writing about cancer and most of those years also writing about Lynch syndrome. But I don’t have Lynch syndrome. Or at least, I don’t just have Lynch syndrome. I even wrote a book all about having Lynch syndrome, even when technically that’s not what my condition is. I’ve been holding back or I’ve been in denial or I’ve been wrong.

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I Won Second Place in a Writing Contest!

This happened a little while ago but my prose piece has just been published, so I can now reveal that I won second place in a writing competition! The contest was Flatten The Curve from STEMag, an interdisciplinary arts and humanities publication.

The piece I entered was a “found prose” piece, “Decommissioning of the Womb”. I assembled this piece by putting together found writing on the decommissioning of nuclear reactors and oil platforms, and reframing them into prose about having a hysterectomy. You can read it here. Many thanks to the editors for choosing me – I’ve never won a prize for my writing before!

Living With Lynch Syndrome: My Life Isn’t Normal, So Why Pretend It Is?

Talking about my CMMRD (constitutional mismatch repair deficiency – a rare type of Lynch syndrome that greatly increases cancer risk) on the Wisdom app yesterday made me feel like I was finding out about it all over again. Actually, no – it feels like I am finding out about it for the first time because that part of having Lynch Syndrome is something I have never properly addressed and have always tried to ignore.

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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!

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