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, June 28, 2020

speaking....

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I think I claimed being raped about 4 years ago  I'd always thought it had to be violent and sinister. A stranger in a park. A moment of...
Tuesday, June 09, 2020

Black Lives matter

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I've been learning,  I thought I was at a good level of, not being a racist. I think I'm definitely up there with the, I' not ac...
Saturday, May 23, 2020

she isn't here

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Like a lot of the world right now, I'm missing my mum, She should have been here, we should have been sharing my life and loving her fac...
Tuesday, May 19, 2020

A spoon full of sugar

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I always pick up when my mum calls, especially if it's a strange time of day. I'm waiting for the news. Shed called yesterday and al...
Sunday, May 10, 2020

more than enough

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I'm not sure when it started, but often I do more than enough. Cleaning Contact Care The best people in my life I measure by a knowledge...
Tuesday, May 05, 2020

inflicted by honesty

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Saying how it is Knowing who's listening Acknowledging the difference Be playful if you can be Consider what you say Am I private? What ...
Monday, May 04, 2020

Fat Bastard

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Had one of those days. Came home to a messy house, a dismissive daughter and an absent husband.  Decided to lie in bed an read a good book. ...
Saturday, May 02, 2020

grumpy

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I've woken up very grumpy. Perhaps a little too much wine bar night hasn't helped. I'm grumpy at the washing up in the sink, the...
Saturday, April 25, 2020

Holding onto you

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I've been looking at photos from the past and trying to remember where I was in them. The easy days I suppose, when you didn't thin...
Thursday, April 16, 2020

Tension is high

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Navigating emotions when you're stressed and tense is hard. I take cortisone replacement steroid because I had both my adrenal glands ...
Monday, April 13, 2020

I never even got to say goodbye

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A cliche line from a film. A regret. A common reality. And now, even more than the everyday. At least, it's now more public.  I think ab...
Tuesday, April 07, 2020

Keep calm and carry on

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I'm trying to control what I can, think of what I can control and not let myself dip into fear. Some days it's harder than others. ...
Monday, March 23, 2020

when you are isolated

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It's clear that the world is never going to be the same. So many of us have now experienced, and continue to feel the acute anxiety that...
Friday, March 13, 2020

COVID 19 and me

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As far as I know, currently I don't have it. Today the world suddenly seemed to get a taste of what a constant medical threat feels like...
Sunday, March 01, 2020

when your past sneaks in

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I had what you could refer to as a re-laps. Nothing medical, all emotional. I didn't know how to say, slow down, let me do this proper...
Saturday, February 15, 2020

flying away

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Today I've flown to South Africa. We're on a girly few days.  New friends and adventures. As the plane ascended I breathed a private...
Sunday, January 26, 2020

new year, new hospital

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I've done my best bet to avoid knowing what the inside of my local hospital looks like. I found out today.  I was very frightened by...
Wednesday, January 22, 2020

I know I have cancer

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and I know it's there all the time, waiting and maybe growing. I had a sudden flash of fear this week that my time may be up. I wanted ...
Friday, January 17, 2020

To everything, turn, turn turn

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I have space to think here and I do a lot of it. To drown it out when I want to sleep I listen to podcasts. But sometimes it is good to th...
Wednesday, January 15, 2020

The unknown

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One way I cope is to plan various outcomes to the unknown. I think them through, who can help, who I'll be, what I need to organise. ...
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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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