This is the transcript of a talk I gave on the Wisdom app. You can listen to it here. Continue reading
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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.
I did a talk on the Wisdom app explaining what Lynch syndrome is and my personal story. You can listen to it here, or read the transcript below.
It’s that time of year again! I love this period in between Christmas and New Year when nobody knows what day it is and I don’t have to do anything at all. What I do usually decide to do is take a little time for reflection and introspection, and part of that is thinking about what I’ve achieved this year and what I’d like to do in 2022. So let’s go!
This is a talk I gave on Wisdom app on Christmas Eve 2021. I talked about finding inspiration from Christmases past, present and future, as well as engaging the senses and taking time to be introspective and take stock of the year during the festive period.
You can listen to the talk here and you can also read the transcript below.
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!
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.
After a long week at work, I’ve had the most glorious afternoon catching up with the National Television Awards (NTAs), which took place last night. I was out last night, otherwise I would have watched it live, so instead I decided to treat myself to pizza for lunch and curl up under a blanket, watching with rapture. And it was wonderful.
I’m launching a new series of webinars called Cancer Scribblers, designed to help people living with and after cancer, and caregivers, to get into writing, hone your craft and share your story in your own way! This first video aims to give you a flavour of what the webinars will be like and to introduce you to the world of writing about cancer. As well as explaining what to expect from future webinars, in this video, I also explain how we can practise self-care when writing, and introduce some of the writing forms and routes to publication.
Please do let me know what you think of the plans so far!
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.
