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.
After waiting two months (and chasing twice) for my CT scan results, I finally got a phone call this week. Historically, I’ve bought into the idea that “no news is good news” because surely if it takes that long to get the news, it’s not urgent and ther’s no problem. And perhaps that’s true – it’s borne from the desire to make some sense of the medical world, to pre-empt news before it comes, to figure it out so that the wait for confirmation is less excrutiating. However, on this occasion, I have been made to question the theory that no news is indeed good news.
What I say: I have a hospital appointment
What other people hear: She’ll be there for a couple of hours
What actually happens: Hospital on Friday for covid test; spend Saturday panicking; no food from Sunday 9am until Monday 4pm; Sunday evening drink two litres of bowel prep; at hospital for 9am Monday; actual endoscopy(ies) at 10.30am with sedation; another 30-60 mins in recovery, discharged around 12pm; home at 12.30pm. But hang on, it’s a capsule endoscopy too, so no drinks allowed until 2pm; no food until 4pm (a total of 31 hours without food) then waiting for the capsule to *evacuate*; panicking when it doesn’t in case you need an x-ray to check if it’s still there, or the test might need to be retaken if there wasn’t enough footage and you have to go through the whole thing again, or need surgery to get it out; then finally relief when it does come out right before bedtime and the recorder thankfully hasn’t run out of battery; worrying still though in case the bowel prep wasn’t good enough for clear pictures and the test needs to be redone, or if they find cancer again; then work in the morning (but only from home as you had sedation and can’t drive again yet), where you need to be a productive human being and ignore it all, while awaiting the capsule endoscopy results.
Welcome to cancer. That was my “weekend” – how was yours?
On the plus side, the gastroscopy found nothing abnormal. Hoping for good results from the capsule endoscopy, too. That would make up for the sore throat and jaw and the embarrassment of chatting absolute nonsense to the nurses while sedated. And getting bile in my hair.
I’m starting a new webinar series on creative writing! It will be aimed at cancer patients, survivors and caregivers who would like to write through their experiences.
The series will include topics such as poetry, memoir, essays, blogging, body image, getting published and more.
The series is still in the planning stages right now, but if you would like to receive more information, please fill in the email signup form. Make sure to tick the “webinars and workshops” checkbox at the bottom.
Additionally, if you know anyone who may be interested in this webinar series, please send them the link to this post so they can sign up to find out more.
I’m planning some webinars/workshops on creative writing for people living with and after cancer. Topics might include writing poetry, writing your memoir, getting published, blogging, self-care, exploring identity, exploring body image and more.
If this interests you, it would be extremely helpful if you could fill in my survey to let me know the types of online events you’d like to attend. Please also share the link with anyone you think may also be interested. Thank you so much in advance!
I don’t have any photos of me in the hospital or in a gown or anything like that. I don’t have many photos at all of me during the time of my diagnoses and surgeries. However, I have dug out a few from around my first diagnosis in 2010 and my second and third in 2018, to show in picture form what my cancer experience looked like from the outside. Brace yourself:
This has been getting some attention on Twitter – it’s a campaign to encourage people to go for cervical smears. It’s based on the statistic that 57% of women don’t want to go to their smear test because the beauty salons are closed. (I question this figure later.) And the campaign is to get people to share a photo of a cat whose fur best represents their pubic hair, in order to raise awareness.
Here’s how you can help to raise awareness:
🐱 Share an image of the cat that best reflects your undercarriage/flower/bits (technical term vulva!) current look.
#⃣Use the Hashtag #myCat.
👭Tell and tag your friends to let them know. pic.twitter.com/8aHf96ynjT
— myGP (@myGPapp) January 18, 2021
Earlier this year I was invited to be on the WhyMe with Vera-Lee podcast, and the episode has just been released!
During the episode, we talk about my three cancer diagnoses, Lynch syndrome, my PhD research and my writing. Vera-Lee and I had such a great connection, and I loved our conversation. Give it a listen and let me know what you think! I’m happy to talk about any issues brought up in this episode.
My Lynch syndrome memoir Gut Feelings is now available to pre-order on Kindle!
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.