Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)
It’s been a stressful week.
I just realised it’s only Wednesday.
Well, shit.
Well, no, it’s actually okay now. Basically I went to see my consultant in October and he said he would send me for a gastroscopy in January, but not bother with a sigmoidoscopy this time around. At the end of December I got an appointment through for this coming Friday.
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.
I would rather have grief
than emptiness,
is it so wrong to feel
envious
of people who have loved
and lost?
I would take a memory
over a story, any day
I would take a funeral
I could actually remember
I would take anything that’s
more than a teddy
and a grave
and an empty head.
One day I might just be another sad story. And who knows how soon that will be? So right now spending even a second doing something I don’t want to do seems unthinkable.
Thought I’d write a quick post explaining the last poem I put up. I tweeted a couple of things but it turns out 140 characters isn’t quite long enough for what I wanted to say.
A stream of conciousness I just found in my notes and probably wrote at work:
We write to stay afloat. I could talk to someone but I don’t even know what I would say anymore. I am no longer coherent, I have inherited
something I cannot give back, in body and mind, in thought and many unkind ways. where have the days gone that I once knew, those peaceful, carefree, relaxed days when everything was almost always okay? Who do I talk to now? I don’t even know what I would say that would be worth the energy, worth other people hearing, worth enduring their concerned faces, as all traces of me fade away, even those alive in the minds of others. All I can say is I’m sorry I can’t and I don’t know and I don’t know.
Having PTSD – or anxiety, or whatever the hell this is – is like lugging a big heavy suitcase around with you all day, but it seems to be invisible to everyone else and you’re shouting at them in your head, “Why can’t you see this thing?!” But you don’t dare say it out loud in case the suitcase really is all in your head and your friends and family think you’re crazy and making a big deal out of nothing, or just attention seeking or trying to get sympathy. Experience has already taught you there are wrong people to try to talk to about it, so you keep your luggage to yourself and hope one day it becomes lighter, and someone sees it and says “are you okay with all of that?” And then you can finally say “No. Thank you for asking about it. I am not okay right now.” After days, weeks, months of lying, you will finally have found a chance to tell the truth. “No, I’m not okay, and this is a bit heavy, actually.” And then someone might give you a luggage trolley, or something. And things will be easier. I hope. Because I don’t even know where to find a luggage trolley.
I spoke to my brother
for the first time ever
the other day.
He didn’t say much.
I apologised for being
twenty-eight years late
but I wasn’t good
with words when I
was one year old.
I went to see my brother
by myself, for the first time ever
the other day.
I didn’t know if he was expecting me.
I chastised myself for
forgetting his exact spot
but it had been a while
since my last visit.
I walked up the path
scanning the rows for him,
came up behind him like
my parents and I usually do
put my hand on the black stone
like it was his shoulder
and moved around the side
to read engraved
“Carla Rodriguez”.
My brother waited
in the next row.
Shamed, I walked towards him and
again, put a hand on the stone
– not as natural a gesture
as I had hoped, as the stone was
lower than I had remembered.
Just another thing I didn’t remember.
I walked in front of him and said
hello for the first time in my life, probably.
Muttered some words in hushed tones,
checking there was nobody else around.
The day was pleasant.
I hated the sound of my own voice,
as I always do, but more so
in the quiet of the cemetery.
So futile and hollow.
I told my brother that my visit
would be our secret. It’s all we have
that we share, just the
two of us. A woman with two
children a few rows away
shouted at her kids to be quiet.
I hadn’t even heard her children.
“She’s trying to wake you up, I think,”
I whispered to my brother. One of the
children looked over at me, and the
woman followed suit, suitably
embarrassed. After a moment of
looking back at her, and unsure
what else to do or say, I said
goodbye to my brother. I think
I told him I would come back.
And I will. It won’t be the only
conversation we have, the only
time we say hello, the only time I
see him on my own, the only secret
we share. I think my secrets
would always have been
safe with him.
This is just for me. If someone else gets something out of it too, whether it makes someone else feel less alone, or like someone can relate, that’s fantastic. If not, then fine, it’ll just be an outlet for me.
I’m struggling this week. I had a bad dream a couple of nights ago, and because I didn’t want to have any more bad dreams, I delayed going to bed last night and went to sleep late. Not too late, but I was tired today. I feel perpetually tired.
Remember that game from when we were kids, where the whole point of the game is to not think about the game and when you do, you have to say “I lost the game”, causing everyone around you to also lose the game?
And then after that, all you can think about is the game, even though you hadn’t thought about the game in a long time and the only thing that set you off was thinking “hmm, I haven’t thought about the game in a while, I’ve been doing really well”?
That’s what thinking about my cancer history is like.
It’s a fucking tedious game.
I thought I’d been doing well. I had been doing well. It’s just been a bad week is all. Next week will be better.
© 2024 Sam Alexandra Rose
Theme by Anders Noren — Up ↑