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.