Sam Alexandra Rose, "The CMMRD Book"

 

Sam Alexandra Rose is a three-time cancer survivor with an ultra-rare genetic condition called CMMRD. She is a PhD student at Teesside University researching how she can use Creative Writing to shape meaning from her illness experiences. She works as a Patient and Public Involvement Manager for charity Bowel Research UK. Sam has had poetry and prose published in over 70 literary magazines and anthologies, and has written two nonfiction books. 

You can read about her memoir, Gut Feelings; Coping with Cancer and Living with Lynch Syndrome, on Creative Writing at Leicester here. Below, you can read all about her latest publication, The CMMRD Book. 

About The CMMRD Book: A Mismatch Memoir and Guide, by Sam Alexandra Rose

While on average people with CMMRD get their first cancer diagnosis at just 7.5 years old, Sam Alexandra Rose is beating the odds in her mid-thirties. But it comes at a price, with three cancer experiences and a whole lot of fear and trauma to sort through.

Part memoir, part guide and with a little poetry thrown in, this book illustrates what it’s like to live with a rare genetic condition and significantly increased cancer risk.

This is a book of denial, hope and eventual acceptance, ideal for families wanting to know more about a CMMRD diagnosis and for healthcare professionals looking to better understand the patient experience.

You can read more about The CMMRD Book here. Below, you can read an excerpt from the book.

From The CMMRD Book

I had assumed I had accepted cancer and Lynch syndrome, and it wasn’t until I interrogated my innermost workings a little deeper that I realised I hadn’t really accepted it at all. I was getting knowledge confused with acceptance, and knowing something is going to happen and accepting it are two different things. Even if you acknowledge that something is happening, and agree to deal with it and make accommodations so that it can happen, that isn’t necessarily acceptance. And I needed acceptance because it was so difficult to be pulled from normal daily life into the medical world every time a new appointment or set of results cropped up.

I was treating each appointment, surgery, screening, and cancer diagnosis as an individual event rather than part of a whole – the whole of course being CMMRD, though I didn’t think about it in those exact terms at the time. I wondered if it would help for me to accept that I was a person with CMMRD, that CMMRD was an ongoing thing that was always there, rather than something that came and went like a horrible tide pulling scalpels and hospital gowns to my shores when I least expected it. I often felt as if I were straddling two worlds, trying to exist in the “normal” world while the medical world was waiting for me and could pounce at any moment. I would be in the office at the digital marketing agency where I worked at the time and I would get a phone call from the hospital asking to book me in for an appointment. All of a sudden I’m not thinking about writing blog posts or emailing my clients; I’m once again considering the prospect of the cancer returning and having to ask my boss for time off to go to my screening. But what if I didn’t have to deal with it all bit by bit? After all, you don’t need to worry about returning to the medical world if you never leave it. Is that really better? At first, I thought it was admitting defeat to resign myself to the reality that I would always be going back and forth to the hospital. But acceptance is not defeat. It could in fact mean more peace of mind.

Sam Rose, "Gut Feelings: Coping with Cancer and Living with Lynch Syndrome"

Sam Rose is a three-time cancer survivor, and this fact has set up home in a corner of her brain. No amount of shooing will usher it from its campsite, so she flings many words at it in the hopes of keeping it pacified. She is currently in the second year of her Creative Writing PhD at Teesside University, where her research is on the connection between Creative Writing and cancer survivorship issues such as fear of recurrence, poor body image, health anxiety and more. Completing her PhD on a part-time basis, she works full-time for a digital marketing agency and keeps herself even more busy as the editor of Peeking Cat Literary. Sam has been published in over sixty literary magazines and anthologies, and has published a poetry chapbook Empowerthy and her memoir Gut Feelings: Coping With Cancer and Living With Lynch Syndrome. You can find her throwing words around on Twitter @writersamr and at https://www.writersam.co.uk.

About Gut Feelings

By the age of 30, Sam Rose had received three cancer diagnoses, each one complete with its own major surgeries and a variety of harrowing experiences. In her memoir Gut Feelings: Coping With Cancer and Living With Lynch Syndrome, the author tells her illness stories with unrelenting candour and a dollop of dark humour, while tackling the often overlooked emotional issues that come with cancer survivorship.

The book is split into two parts. Part One ('The Large Intestine') tells her medical story, as well as the joyful moments between diagnoses and appointments. It explains Sam’s diagnoses of bowel cancer, uterine cancer and duodenal cancer, as well as Lynch syndrome, which is a genetic condition that makes people more likely to develop certain types of cancer. Part Two ('The Small Intestine') offers commentary on the emotional issues relating to cancer survivorship and self-care ideas for others who have had similar experiences. The book aims to be a hopeful, empathetic and honest read for cancer survivors, caregivers and clinicians alike. 

Below, you can read a sample from the book.

From Gut Feelings

By Sam Rose

Once I had a bed on the A&E ward, I was seen by a doctor who checked me out. He was the third person of the day I showed my butt to, but I think he was the first one to stick his finger up there – and in front of a nurse, as well.

“Is this the highlight of your day?” I asked as I felt the slight discomfort of his gloved finger. “Because it’s the highlight of mine.”

He laughed, and I felt like I was in good hands (or I had good hands in me, I suppose). He was about thirty, a little round, with glasses and a good-natured smile. He seemed quite laid back and made me feel a little more at ease.

“That is a polyp,” he said with confidence, once I was decent again. I was no wiser.

“What’s a polyp?” I asked.

“It’s a little growth, sort of like a wart.”

So that was that mystery solved. However, I had lost quite a bit of blood so I needed a transfusion. I was in for an overnight stay so that four pints of blood could be poured back into me. That’s about half of the blood I should have in my body. My parents disappeared and came back with some magazines and puzzle books to keep me occupied. Later, I was moved from A&E to a regular ward and a nurse offered me some toast since it was late by that time and I had missed dinner. I remember being surprised and delighted at what I saw as a very kind gesture. Now I’ve had more hospital experience, I don’t know why I felt so touched by toast, as of course, it’s normal to be given food while you’re in hospital. Perhaps it was because I had never been looked after by a stranger before.

Because I was having a blood transfusion I was given something else through IV so I wouldn’t get “overloaded.” I wasn’t sure what it was but when they said it would make me need to pee a lot, they weren’t kidding. I spent half the night trundling up and down the otherwise quiet corridor, taking my IV drip stand for a walk to the toilet and back again, under the sympathetic eyes of the nurses. I would come back to bed and then immediately need to go again, and it got so bad that eventually, I went once, then hung around in the bathroom for two minutes until the urge returned. What was the point in going back to bed? Pair that with being woken up throughout the night anyway to have my blood pressure taken, and it was another bad night’s sleep.

I was fascinated by the effects of the blood transfusion, though. I have always been a bit pasty and even had a customer at work offer for her sister, who was a nurse, to give me a blood test. (I declined). Looking in the mirror during one of my many bathroom visits, I could see the colour returning to my cheeks, lips and hands. My hands looked like I’d been stood out in the cold, and my lips were pinker than they had ever looked. I felt like I had stolen them from Snow White – I had given her back her ivory skin and taken her rosy red lips. Standing in that clinical, very alien-feeling toilet, I felt alone and out of place, but my pink skin brought me a small spark of joy. Or perhaps I am remembering things a little too fondly. I do wonder if my brain tries to protect me from remembering the reality of these things.

I was woken up in the morning by a nurse opening the curtains to reveal the bright 8am sunshine, and it was toast again for breakfast. Mr Rashed, the bowel surgeon who would become my consultant for the next ten years and counting, came to examine me a couple of hours later. He asked if he could stick his finger in my bottom (didn’t I feel popular?) and proceeded to do so with several of his entourage watching, at which point I almost died of embarrassment. I suppose I could have said no. Needless to say, I haven’t seen my dignity since, but I’m sure it was just a burden anyway and I’m better off without it. What good has embarrassment ever done me?