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

Category: Creative Non-fiction

Pre-order My Memoir On Kindle!

My Lynch syndrome memoir Gut Feelings is now available to pre-order on Kindle!

Gut Feelings Lynch Syndrome Memoir Sam Rose

If you like your books in electronic flavour, pre-order now and my guts will be spilled onto your device on the official release date of 7th February 2020!

Here’s the blurb:

“Lynch syndrome is a genetic condition that makes it more likely for a person to get cancer. In other words, it’s the world’s worst loyalty programme.”

Colon cancer, uterine cancer, duodenal cancer. Colostomy bags, infertility, genetic testing. But also, joy. Also adventure. Also grit.

GUT FEELINGS spans ten years from the author’s first diagnosis to the life-changing surgeries for her second and third. Racking up a collection of medical experiences – and losing countless organs along the way – Sam Rose has stories for anyone facing the uncertainty of cancer or Lynch syndrome, to help patients and survivors feel less alone.

Pre-order your copy of Gut Feelings on Kindle now!

School Photo

Round glasses, pink with colourful splotches. Mustard tie, grey cardigan buttoned up and restricting. Green and pink satchel with yellow clasps that click closed in that satisfying way. First day of school picture on the patio in the garden. Faded hopscotch. Curls tied up in a ponytail. Pleated skirt. Shiny black shoes. Fluttering stomach. Feeling of dread. Long walk to school.

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When a prologue is both a pep talk and a dedication letter to the dead

I spend the first morning eavesdropping on the birds, carefully noting each inflection, every declaration. They trust me to handle this information with complete accuracy:

too, too
too… too too
whi whi whi whi whi whi
too too too too too

The meaning of this compilation of sounds is top secret.

A lone duck goes about its important business in shallowing waters. It appears there has been a drought here, but it is the place that makes me feel the most full, in many ways. Welcome home. There are only good things here.

Library Eggs

I visit the local library for the first time in at least ten years. It is no longer my local library, but still my parents’, and still local enough. I go because first I took myself to brunch at a café down the road and
had substandard poached eggs that offered me thin white egg juices on the first incision, and dark orange yolk on the second, amalgamating into mush on the plate. I had wanted to write in the café, but brunch then felt like less of a treat and more of a mission.

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I am ten years old

I am ten years old and it’s late afternoon one day in 1998. My mum is pottering around the kitchen part of our small kitchen-diner. My dad is taking a photo of me and I’m grinning. I’m wearing a baggy green camouflage-pattern t-shirt that used to belong to my older cousin, and black Adidas tracksuit bottoms (with three stripes going down the sides of the legs, which is always better than two, because it means I can run two of my fingers down my leg in between those three raised white stripes instead of just one finger between two stripes, which feels much better somehow). To top off my ensemble I’m wearing a hot pink hat which is soft with a furry rim, which is a slightly lighter pink to the rest of the hat but no less garish. I am surely the most stylish ten-year-old in Northamptonshire. Who needs matching clothes anyway?

Oh, and I’m singing into a banana. Obviously, because I’m playing my favourite new compilation album on the hi-fi, which is Now Forty-something-or-other. I’m probably listening to Perfect Ten by Beautiful South, or Horny, by whoever that was by, because that was on the album, and as a ten year old I have no idea what the word horny means, so I sing along as loudly as possible. I don’t know why this woman has horns on her head. Is she a devil or a unicorn? Who knows.

There are pictures on the fridge that I drew in felt tip or paints. This room is my art gallery as well as my concert hall. I stand on a dining chair because that’s all part of the routine – I have to stand on a chair. I’m an exhibitionist. My forefinger and index finger on my left hand sit between those Adidas stripes on my leg while I clutch my makeshift microphone with the other hand. I watch myself singing and dancing in the mirror hanging above the table. I’ve got moves. I am awesome.

The Dream Machine

It’s a radiotherapy machine you have to work yourself – yes, you, as the patient. There is a nurse standing next to me as I lie on the bed
part of the machine. And I mean bed in the loosest term possible – bed, as in something you lie on, not anything providing comfort.

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The Scarf

The first time my partner saw it he asked me why I was wearing a curtain, but I loved it anyway. It was huge – long and wide like a pashmina, but thin, and it was such great quality. It had a patchwork of different coloured squares with pattern overlay, shiny and silky on one side and matt on the other. Blues, reds, greens, oranges, yellows. Maybe that was the start of a love affair with multi-coloured things. A time when I stopped declaring blue or purple or red as my favourite colour (I can’t even remember what my favourite colour was), and started loving all colours in equal measure, and all at once. 

That scarf was special. I loved it like I had never loved any other scarf, and I’ll probably never find a true replacement for it. I could gather it up and use it like a regular scarf, or wrap it around my shoulders, fold my arms into it and get lost inside that rainbow of comfort. It was like a blanket I could take with me anywhere. So in January 2010 when I wasn’t well and had to go to the doctors, I wore it.

I remember standing in my bedroom wondering if I should take it or not – I can so vividly remember the spot I was standing in, looking down at the heap of clothes on the floor, and debating on whether or not to wear it. I really wish I had decided not to.

But I did take it. Which meant when the doctor told me to go to A&E, I was wearing it. And when I was taken up to a bed on the ward, I had it. And when my parents took some of my things to the car out of the way, they had it. And then they didn’t have it. It wasn’t in the car, in the A&E ward, or anywhere in between.

Calls to the hospital afterwards yielded nothing. Nothing in the lost and found. I looked on the internet for another one but the shop didn’t sell them anymore. It was from Tie Rack. I even emailed them to ask if there was any hope of getting another one somehow. I sent them a picture: Have you seen this scarf? Can you help me get another one? Nothing.

There are similar ones out there, and I have one sitting somewhere at my parents’ house. It’s nice. But it’s nowhere near the same. It feels like a cheap copy. And I haven’t felt the same way about another scarf since.

Sure, there is my winter USA scarf  – stars on one side, stripes on the other. Stars and stripes and hopes and home. And my cosy red snood I got from my Secret Santa at work last year. But nothing else feels the same as that multi-coloured scarf did.

I’m beginning to think that scarf holds some kind of metaphorical meaning. And maybe if I did somehow become reunited with it after the five years it’s been missing, I still wouldn’t feel the same. Even if it was the very one I lost, it still wouldn’t make up for all the time in between. Because so much has changed.

I don’t even know why I still think about it sometimes, but I always seem to go back to thinking about that damn scarf.


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