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, August 26, 2023

Spanish football

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Last night, the women - my girls included, talked about our experience of misogyny. I said and know to be true, that have forgotten more exp...
Saturday, August 19, 2023

HR rules

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  I've got my clinic appointment through, at the end of September. I spent a few hungover moments this morning having a small panic abou...
Wednesday, August 09, 2023

low

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My mother in law is worried about me. She's spent a couple of days here and I suspect she can see a version of me that I really don'...
Thursday, July 27, 2023

my birthday month

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August feels like a month to reflect and gather myself. I'm not sure I can this time. Waiting on results Waiting on the way I'll fee...
Monday, July 17, 2023

to be reunited

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 I am being reunited with people who have kept me strong through hard times, I am enjoying the connection and closeness. I am also 'exci...
Saturday, July 08, 2023

Letter on the table

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 When we got back, less than 5 hours ago there were flowers and 2 letters in my familiar yet unfamiliar kitchen.  One was for my daughter an...
Tuesday, July 04, 2023

End of an era

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 This evening I set a fire and opened a bottle of wine that my yr 12 class bought me as part of a leaving gift. I danced in the front room a...
Sunday, June 18, 2023

today is bitter sweet

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Here it isn't father's day. But it is in the UK.  And I know I would have loved to see him. Talk to him, probably get frustrated by ...
Saturday, June 17, 2023

fellow VHLer on Instagram

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 I feel and affinity with a complete stranger, and have been happy to see her comment on my posts. She looks to be my age, think she has kid...
Friday, June 02, 2023

I'm a worrier and a warrior

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I have been on a hen do, with some lovely women, each of us have been through trials and tribulations. None of us are coming out of this uns...
Saturday, May 06, 2023

telling my story

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 I had a fascinating chat with a colleague, we discussed all things kidney.  I will be pleased when I get back into the scan flow - I am pus...
Thursday, May 04, 2023

VHL awareness month

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And the month that my dad died in.  I'm missing knowing he's alive and I'm feeling so deeply sad.  Right now my life is very uns...
Tuesday, April 25, 2023

VHL - is it rare?

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 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL. Sm...
Saturday, April 15, 2023

triggered

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This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talk...
Friday, April 07, 2023

I miss him

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I'm really missing my dad. This week I've dreamt of him often. I've woken up crying and I've sensed that he's not here. ...

You weren't my aunty but you were

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 I didn't even know she existed until my brother stayed with her and my mum's cousin Tim. But I didn't register that, a couple o...
Thursday, March 30, 2023

Passion fruit

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 I can leave Malawi content as I have harvested some passion fruit.  This little moment matters to me, not leaving something undone.  I don...
Saturday, March 18, 2023

Searching for what should make me happy

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 I am increasingly relying on fate and not sensible planning. I have applied for a maternity cover - the Headteacher was very nice but I got...
Thursday, March 16, 2023

adults think they know everything

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When I was about 18 I went to a odd hotel in Great Yarmouth. It was too see if I deserved an arts sponsorship to get to arts school.  I didn...
Sunday, March 05, 2023

home is where the heart is

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 I am home, in the Warm Heart of Africa. It certainly felt odd. My heart is split and that might never change. I understand why I'm feel...
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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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