Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)
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.
Confiding in a friend is like shouting – you have to get a bit closer before they really hear you.
I’m not shy
I don’t have low confidence
I don’t prefer quiet environments
I am usually quite happy and cheerful
I don’t dislike you (probably)
I’m not bored (probably)
I’m not mysterious or thinking deep thoughts
I don’t need you to speak up for me or talk to other people for me
I don’t need you to help me to be louder or to invite me to talk
Calling me quiet like it’s a bad thing (or doing any of these) does make me want to hit you
*emphasis on the ASS
Add your own to this list in the comments!
What do brave cancer patients/survivors do that cancer patients/survivors who aren’t brave don’t do?
What do strong cancer patients/survivors do that cancer
patients/survivors who aren’t strong don’t do?
I received an amazing message today. It might not sound quite so amazing to other people, but it has made me feel so happy and empowered and excited. I was talking to my friend about all the things I want to do – travelling, different and unusual things, spontaneous things – and this was his reply:
“You beat fucking cancer there is fuck all on this planet you can’t do!“
I hadn’t even mentioned cancer to him but he straight away tapped into why I want to do all this stuff, without me even having to say anything. He got me, and he said exactly what I needed to hear. And now I feel so empowered, and strong, and happy and excited. That’s the reason he’s my bestie. I’ve written it down and taken a screenshot so I can look at it and remember, and I hope his words never lose their effect. Just amazing. And what’s more is he believes it, and he’s made me believe it too. What a great day.
okay can we just one last thing
spreading the idea that one is only triggered when having a full blown, system-shut-down panic attack is damaging and delegitimizing to people who have physiologically and emotionally different reactions to…
Great validating post on triggers. Speaking of which, I’ve been doing really well lately. I’ve been really happy with myself. I haven’t thought about cancer or Lynch Syndrome much for maybe a month now, and when I have, I’ve been able to let thoughts drift into my head, then let them go and move onto something else. And it’s been something I’ve instigated, like looking on the LS Facebook page, and then been able to stop thinking about easily. Until Sunday, when I answered the phone to a cancer charity who have been calling me every day for the past two weeks.
I had been avoiding answering the phone partly because I was worried about the conversation being a trigger. I finally answered it and the guy on the line asked me why I had previously agreed to donate to the charity, to which I replied “personal experience”. I was then pressed further – “someone close to you?” “Myself…” “What kind of cancer did you have?” I probably should have just said mind your own business or something, but I just went along with the conversation. Then the guy started talking about his cousin who’d had cancer, and had suffered with a low immune system due to the treatment, and did I have that problem too? I didn’t think so. Apparently it was really difficult because nobody could visit his cousin if they had even the sniffles. That does sound difficult and though I sympathise, I don’t actually remember asking. I’ve had the charity (maybe not the same charity, thinking about it) call me before and they’ve always been really nice, but never as personal as that, with their questions or their own unsolicited anecdotes. It was all very strange and a little triggering, and also turned out to be totally unnecessary because they wanted me to donate regularly, which I do anyway.
So. I think that’s the reason I’ve been finding it a little difficult to catch my breath a few times over the last couple of days. Breathlessness caused by stress, I think. I’m just going to have to try really hard to kerb my thoughts and not slip back down that hill. It’s only a setback if I let it be a setback, right?
Poor me.
Pour me
another.
This summer will be five years since I had my sub total colectomy (bowel removal/intestine eviction). So, essentially that will be five years of being cancer-free. I’d quite like to do something to “celebrate” (as much as you can celebrate once having a life-threatening disease). I googled it to get some ideas and there are a lot of sites about it, apparently it’s called a cancerversary, but that sounds a bit weird. I looked up the exact date of my operation, and it was 27th July 2010. Funnily enough, two days ago me and my parents booked a trip to Gothenburg, Sweden (I’m learning Swedish and can’t wait to go). We’re going on our trip on the 27th. Weird, right?
So that’s kind of a celebration. Though I might not want to mention that to my parents, because, awks. Awkward to talk about what happened full stop, but awkward celebrating me being okay when my brother died of cancer. Is that survivor’s guilt?
I don’t know. Plus it’s occurred to me that any thoughts about celebrating six months in advance could be a bit previous. Like tempting fate. So. That makes me feel scared. So, mixed feelings. Happiness, relief, sorrow, guilt, fear, impatience.
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