Diary of a Genetic Defect, VHL, Von Hippel Lindau

An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.

Sunday, May 29, 2022

blossom

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In my garden a tree that I don't normally notice is blossoming. It's subtle and beautiful.  It's making me think of VHL. I'm...
Wednesday, May 11, 2022

silence me

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I've been told I talk too much Often I've been silenced more. I've been told I over share Often I've hidden so much more I...
Sunday, May 08, 2022

who knows where the time goes

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If I'd been able to, that would have been the song at your funeral. Because, because it's the first one we really learnt together, w...
Thursday, April 21, 2022

I didn't know I would miss you this much

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I'm looking out over a cloud covered sky, listening to waves crash into the side of the room I'm in, the beauty and power a welcome ...
Tuesday, April 12, 2022

pain in the arse

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It is getting better. Healing. A slow process when you are going through it and every so fast on reflection.  This time, a break is a time t...
Sunday, April 03, 2022

my bum hurts

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VHL sucks, I'm glad I get scanned, but I know I'm happy to put them off, until the doubt gets in. This week however I have a non VHL...
Saturday, March 12, 2022

spring and winter

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It's that time of year. In the UK the sun is making more of an effort and here is raining, lots. Here the nights draw in, as much as the...
Friday, February 18, 2022

happy birthday

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Each time, each time, each time for so many times.  I wonder and I know there's no point But I wonder
Thursday, February 10, 2022

seeing your mum again

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I was telling my friend Tabitha about my mum and how wonderful it was to see her happy because she was doing what she does best .. helping t...
Tuesday, February 01, 2022

the good news

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The journey, not the destination. I'm certainly always on one. The twists and turns. Right now I'm back in a lovely bit of road, it...
Sunday, January 16, 2022

it's probably nothing

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Sat on a toilet. Common I think. Here I am taking it all in to make sure I can face my baby girl. "Prof wants to see you face to face...
Monday, January 10, 2022

Home and a cushion

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We made it home in one piece, the unpacking began, I always do it before I sit down. We have one bag missing but happily it is one that only...
Sunday, January 02, 2022

all of the reasons home is harder

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We've now done all the 'homes'  They are all harder than would be ideal They all have people They all make more sense when you...
Friday, December 31, 2021

familiar chairs, unfamiliar faces

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I'm sitting in the yellow chairs of the imagining department. It's been like this for a while, the changes and improvements continue...
Monday, December 27, 2021

winter is different

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I'm looking at one of the fastest pigeons I've ever seen. I have on a hat and scarf to begin to warm up for a walk in the grey cold ...
Saturday, December 18, 2021

it's raining

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Here in the heat of Africa's warm heart I'm watching the long awaited rain begin to fall. It's been almost a month since there w...
Friday, December 17, 2021

Familiar strangers

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I suspect that many people have more than one home. And some, none. I'm about to leave home to go home.  I'm nervous, excited, longi...
Wednesday, December 15, 2021

flying home for Christmas

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I won't believe it until I'm in my mum's arms, but we're going. Red lists, politics and my own sense of trepidation aside, w...
Monday, November 22, 2021

inheritance

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I get half the House One day
Saturday, October 23, 2021

Facebook memories

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It's this time of year when Facebook reminds me of that time. 6 years now, 6 years I really didn't think I'd have on some of tho...
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About Me and VHL (Von Hippel Lindau)

diary of a genetic defect
I have Von Hippel Lindau disease. Some call it a cancer. I think this is misleading at the moment. I have a few tumours and have had a few operations too. I live with it. What other choice do I have?
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