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, 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. ...
Sunday, January 05, 2020

where anxiety lies

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Back to work tomorrow and I am anxious. I always want the INSET to feel worthwhile, and I always start to slowly remember what I have to do ...
Friday, January 03, 2020

Each New Year I feel the same...

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Although I'm being better at enjoying New Year. The resolutions seem futile... but I always think about the worst that might happen and ...

my aunty

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I got in from a meal on the top of a mountain and saw a message from my mum about my aunty. She doesn't have long. I cried, and the next...
Sunday, December 22, 2019

it was the night before...

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1999. I sat on a sofa with my sister in a room I knew well. We were holding hands and contemplating the New Year. We sat in silence for quit...
Thursday, December 19, 2019

I can see a million stars

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It's almost the end of 2019. Time keeps fighting me. But here I am counting a million stars and knowing what joy is. I'm one o...
Friday, December 13, 2019

The beginning of the end

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For people like me, those of us with a preexisting medical condition the result of the general election was not only sad and disappointing, ...
Saturday, December 07, 2019

End of term and time for family

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It is going to be a relaxing break, we have plans to wander and roam and I know we are going to rejuvenate and cherish this time. Our Chri...
Sunday, November 24, 2019

Avoiding Facebook

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My country is about to make a big decision and potentially so is my place of work. I made a decision to temporarily stop following brain tu...
Sunday, November 10, 2019

Telling new people

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As a teacher this is an annual event. I don't gather any new students or staff around me and say... to understand me here's the lis...
Friday, November 08, 2019

as luck would have it

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Here I am. Alive and kicking. Out with friends and coping with all the mundane reality  My crainiverseary... 
Sunday, November 03, 2019

Photos on your timeline

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How many pictures do you have on your timeline in hospital? Between me and my dad I have quite a few, the familiar lighting and flooring. T...
Saturday, November 02, 2019

when your confidence gets knocked

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It's been a strange and difficult week at work. We've been inspected.  I know I did everything I could during and I kept my integrit...
Tuesday, October 15, 2019

Recovery is a long road

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I don't have post traumatic stress disorder, I do however flash back to those days in hospital and the overwhelming fear of being there ...
Monday, October 07, 2019

70 today

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My dad turned 70 today. This is somewhat of a medical miracle. I wonder often how he feels about the life he has now and the life he used ...
Saturday, October 05, 2019

When someone else is ill...

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My husband is unwell, I know this must be, because he has taken to bed and despite trying, he has had to stay in bed for two days. I'm...

Coping and worrying

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I keep it in check, but I am a worrier. Having am almost teenage daughter helps me focused. My mum, with the bet of intentions told me many ...
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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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