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

Tag: lynch syndrome (Page 2 of 6)

A message from a friend

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.

Tell Me II

Tell me I’m amazing and strong and
how if you were me you’d be proud
because you don’t know how you
would have coped.
Tell me I’m an inspiration, because
something good has to have
come from this.
Tell me something that will
make it all worth it.

Watering Weeds

I don’t know if I can rake this all up again.
It’s too close to the surface as it is
and requires no watering to grow,
there’s no need to hoe, and the seeds
were sown so long ago and so deeply
burrowed – I am borrowing memories
that never run out, I go back in time
every time I write a single line and
it’s scaring me so much right now
I just can’t.

I don’t know if I can do this Lynch syndrome memoir/self help book thing. I think it might be too hard. I’m going to try anyway, but I’m afraid I’m committing myself to something that is going to be more of an emotional struggle than it’s worth. I will press on. Just not tonight. Writing is hard for so many different reasons.

Lynch Syndrome book

I’m writing a book about Lynch syndrome because there are like, none out there for people just diagnosed. I’ve started on it with a kind of self-help bent, but it already sounds too clinical. I think I’ll go more down the memoir route – still helpful, but putting my bad memories to good use. I think something personal will be more empathetic and appropriate.

George Ezra

You may think that he’s a demolition expert
When he’s finished with your self-esteem
It may be true we all need knocking down a few
Come find shelter or your shelter with me, with me 
– George Ezra, Breakaway

I love George Ezra’s album, but you’re wrong, George. I didn’t need knocking down a few. I needed building back up.

Don’t mind me; it’s been a bad week. I’m feeling sensitive to like, everything. So. Maybe next week will be better.

Sometimes

Sometimes when I’m trying to write about my experiences
I stop suddenly and smack myself on the forehead and
cover my face and just want to scream because
I can’t believe that this is me.

Gardening As It Sleeps

I have been digging
so hard
dirt is all over my face
and my eyes are damp
from the strain of it all

but no-one else can see.

I have been digging it all up
heaving it out of the ground
and throwing it in piles
all over my garden.
The soil is soft and it’s easy.
I make it look easy,
should anyone be watching.

They’re not. I do it in the
dead of night. I’m good at hiding
it and not even on purpose.
It just comes naturally to me.
Dig it up. Turn over the soil.
Put it back. Plant marigolds
on top of it. Making a scene
ain’t my scene. Dig it up.
Rake over it. Water it with
whisky. Put it back to bed but
check on it in the night like
a parent checking in on their
children as they sleep. It only
pretends to be asleep.

Difficult writing

Gotta try to write a difficult thing tonight. I’ve been putting it off because it just hasn’t… come out. I had a difficult conversation with my manager about my medical history this week and I think that took it out of me and now my inspiration is shot to shit. Hoping Jack Daniels is gonna get it outta me tonight because I don’t wanna put it off anymore. Might help if i ever turn off Orange Is The New Black. Write drunk, edit drunk, submit drunk, stop being distracted. #AwesomeWritingAdvice

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