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.

Saturday, January 30, 2021

gifts make memories

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 I'm not very good at buying gifts. I try but I over think some, under think others, am often crippled by the need for it to be useful, ...
Saturday, January 23, 2021

a full bin

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 There are moments when you realise that the mundane is such a joyous blessing. Because I tested positive for COVID but my husband and daugh...
Tuesday, January 19, 2021

A seasoned self isolator

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 having spent many a week or two or more in hospital I'm very used to my life suddenly reducing to the size of a small room, ward, hospi...
Sunday, January 17, 2021

Being one of the stats

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 I tested positive for covid, I join the millions, billions of people who have. I feel a little fraudulent though, a slight tickle in my thr...
Saturday, January 09, 2021

The honeymoon of post scan results

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 I make the same health promise to myself quite often, I've done it for a large part of my adult life and at times I actually commit and...
Saturday, January 02, 2021

2021, hi, how are you?

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 Nearly the end of the holiday, it's felt long and mostly restful, I felt profound yesterday but didn't get round to recording my th...
Saturday, December 19, 2020

I was right, Macbeth wasn't

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 all is well in the state of my body. (mixing my Shakespeare references a little but you know...)  As well as can be expected given the list...
Thursday, December 17, 2020

Tomorrow, tomorrow and tomorrow

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 When Macbeth said it, he was feeling rather gloomy.  I'm rather optimistic.  Let's see who was right 
Tuesday, December 15, 2020

18mm

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We have a friend on campus, who, no matter why a reference to size is mentioned, will inevitably make a joke about the size of his willy, or...
Saturday, December 12, 2020

waiting with twitter

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 At some point my twitter and my blog will converge and I wonder if I'll then do a kind of double entry...  anyway this morning we are h...
Wednesday, December 09, 2020

a newbie again

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I wasn't sure where to go, what I needed to take or how to fill the forms in.  My husband came, my daughter came, that helped by hi t go...
Wednesday, December 02, 2020

Just about coping

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 Today I had a moment of repetition, like the time 7 or so years ago on the yellow staircase at my school, holding onto the banister and bre...
Sunday, November 29, 2020

A nice up of tea

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 I just had a nice cup of tea and a bit of a cry. The power of a good friend, ready to let you let go a little bit can't really be measu...
Wednesday, November 25, 2020

scanxity

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I'm quietly freaking out. I'm used to a level of routine and the annual process. I'm used to my hospitals in my country and now ...
Saturday, November 21, 2020

My uncle Ken

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 This morning I received the sad news that he had died. I knew he was ill but it was still a shock. He was a constant in my childhood, a cal...
Tuesday, November 17, 2020

no matter what room you're in

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You still feel fate dancing around you. You still know that it can change on a whisper You know that some people get it and some never will ...

I did it again

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 such was the success of my talk to year 10 biology students I was called on to do it again for r 12. Such a privilege to speak to them abou...
Friday, November 13, 2020

precision over beauty

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Across the globe teachers and students are coming to terms with the prospect of another year of teacher assessed grades. I'm currently i...
Thursday, November 05, 2020

craniversay

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It's still remarkable to me that I'm where I am today. I remember the complete reliance on the hope that 5 years ago, they world say...
Sunday, October 18, 2020

onion under my finger nails

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This has been a bliss filled week. The worry and strain of the everyday slowly disappearing and giving me space to be and feel and love. Wha...
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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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