Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)

Tag: lynch syndrome (Page 1 of 6)

Post-checkup Check-in – Diagnosis: Happy

Hello! Life is really nice right now. I’ve started back at work part-time and I’m enjoying it. The dress code changed so we can wear casual clothes. I’m looking forward to a couple of weekend trips away with my boyfriend. I’m thinking about doing a PhD. I was anxious last week because I had a phone call on Tuesday asking me to go in for my annual flexi sig on Friday and that was like, no time at all to get used to the idea. But I went and they said my internal pouch is healthy. There’s nothing like that kind of relief.

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Update: 28th December

Hello! It’s been a while, hasn’t it? I thought an update was in order as I’ve been off the grid for a bit, so here we go.

I had my Whipple surgery on 7th November. It was eight hours long. It would have been six hours but they had to spend the first two just dealing with adhesions from previous surgery. Then I was in the HDU (high-dependency unit, a bit like ICU) for three days – I don’t remember much about that time. And then I was on a regular ward for eight more days.

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Update: Op #2 Incoming

Have another life update blog post, because that seems to be all I’m good for at the moment. Having said that, I have written one or two poems, but while I previously posted a lot of them on my blog and didn’t leave many for submitting, I now seem to be swinging completely the other way. I promise I will post some new poetry on here soon.

Anyway, I’m updating today because I had an appointment with the surgeon who will be doing my whipple procedure. I’m one month post-hysterectomy, and I’ve been passed over from gynae, who have said no further action is required from their side of things. My stomach is still a bit sore especially if I’ve been particularly active, but I’m going to try driving tomorrow, and I’ve come a long way.

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Medical Update!

Oh, hello there!

I thought I should blog as I haven’t in a while, and things have been happening. The annoying thing is, things are still happening and things will still be happening for the foreseeable future. Though I am not thinking too far ahead, so there isn’t much of the future that is foreseeable right now.

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We’re Making The Right Choices

Whenever someone says they don’t have a choice about something, I always think, well there’s always a choice – no matter what the subject matter is. You can just do nothing. You can sit still, hole up, you can struggle or not struggle, whatever situation you are in. You can keep hoping or lose hope. You can try or not try. You can keep going or give up.

So the other day when I was thinking about how I deal wih being a cancer survivor and I thought ‘well I have to deal with it, I haven’t been given a choice or been asked if I wanted it or not’, I immediately thought – as an involuntary reflex – ‘you always have a choice’.

So I thought about it, and I’m right. I don’t have to do the things that I do. I don’t have to go to screenings or checkups, and I never had to go along with genetic testing. I don’t have to do anything at all, ever. I could just bury my head in the sand, but I don’t. I’m making the right decisions. I’m doing as well as I can in the circumstances. I have a choice and I am making the right choices. And if you’re going to checkups, and monitoring yourself, and keeping on top of all your health-related stuff. you’re making the right choices, too. And I think that’s a little bit affirming. A little something to hold onto.

I’m scared

Got my annual gastroscopy coming up next Friday. Been thinking about it for over a week already and there’s still eight days to go. I think it might make it easier if I admit to being scared and make it really obvious. What’s the point in hiding it? It’s normal to be anxious. So.

I’m scared. I’m worried about what the outcome will be. I am scared and that’s normal.

If you have a scan or a checkup coming up soon too and you’re scared, it’s okay. You’re allowed to be scared. Give yourself a break. Let yourself be. The waiting is the worst bit. (Actually, the gastroscopy itself is rubbish too so it’s all crap really, but whatever.) The waiting is hard. But do what you can. It is what it is.

Look at me, talking like I have all the answers. I don’t know any better than anyone else. i’m just trying to get by, and thinking that maybe admitting fear exists makes it a tiny bit smaller somehow. It’s okay to be scared, and it’s okay to be honest about it. There is no shame here, only truth. I’m scared and that’s normal. I’m scared, and that’s normal.

my cancer story

I wasn’t planning to do this tonight, but I have been asked today what my cancer story is, and not for the first time. So I’m basically doing now what I intended to do when I was first asked by someone on Tumblr a few months ago but never got around to – a brief summary of my cancer story.

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pairs of eyes

If enough people see your scars
do they get any lighter?
if more people know why
there is a cavity
where your bowel should be
does your stomach stick out
a little less?
Is there power in more pairs
of eyes?
I feel better for being known
a tiny bit better.
I feel stronger for standing
up, validated, vindicated,
now that I have ‘come out’
in a sense, as a person who
has been brave, who has
seen things
no pair of eyes should
have to see. Maybe now
I’ll feel a little more free
too, a little more of a
loose cannon, with no
need for explanation.
I should now already be
justified in anything
I say or do about this.
I only hope those new
pairs of eyes can see
that this is a
terrible, and terribly
important part
of me.

My first chapbook Empowerthy is now available on Lulu.com! I’m so excited and pleased with how it’s turned out. The theme is empowerment and empathy, with poems about my experience as a cancer survivor with Lynch syndrome. There are a lot of poems I hope will resonate with others, and I hope some uplifting ones too!

Part of the profits will be donated to Lynch Syndrome UK.

Here are all the details:

Hard copy on Lulu.com: http://ow.ly/NE8g1

eBook on Lulu.com (ePub format for all eReaders): http://ow.ly/NE8s8

iBookstore: https://itunes.apple.com/gb/book/empowerthy/id999818942?mt=11

Soon to be available in print on Amazon and Barnes & Noble, as well as KIndle, Kobo and Nook!

Thank you very much for your support; any reviews, comments etc are greatly appreciated!

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