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, April 28, 2019

Mortality and immortality

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Once you really know one you can't forgive the other. I've been acutely aware of my mortality for most of my life, which seems to ...
Wednesday, April 17, 2019

Whisper 'I love you'

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I've always said it, often and to all sorts of people. I give my love freely and it means many things. I know that, as a child, I was ...
Saturday, March 16, 2019

Luck, choice, hard work

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This term has been hard . There has been so much variety and I have seen an unacceptable level of poverty and privilege. Here I am. The h...
Saturday, March 02, 2019

Touching death

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I cried in the bath yesterday. I cried because I know I'm going to miss part of my daughter's life. Tonight I cried because I felt ...
Tuesday, February 19, 2019

Knowing tragedy can strike

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My newest friend and I have something in common. Many things. But we know tragedy can pop up regardless of the day, joy or season. My mot...
Friday, February 08, 2019

Ex pat

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Being an ex pat is the most ridiculous thing to be. We're immigrants. We have the extraordinary experience of being here. I'm not...
Tuesday, February 05, 2019

The push and pull

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I want her near me every second of the day. I want her safe in my arms, a place she can't stay I want her to know my love is in her sk...
Monday, January 21, 2019

Letters to my dad

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something unexpected and rather wonderful has begun to happen. My dad, when he has the physical and emotional energy, has started up a real...
Sunday, January 20, 2019

Sad and angry

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I've been both this week. News that a friend was suddenly dead and by suicide was hard to take. I would love to be at the funeral as I...
Saturday, January 05, 2019

A list

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When did I start doing things? It was before my brother died. Then I carried on doing things. In a very rough order... Drama wise I was...
Monday, December 31, 2018

Fuck off to Disneyland.

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My mum and I would wonder when I would get my...fuck off to Disneyland moment. Your cancer needed to be terminal. But we never really know...
Friday, December 21, 2018

More rain

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Well, it is the rainy season. Unlike the refreshing power of the rain here, VHL comes time and time again. You know it will show up. When? ...
Sunday, December 16, 2018

I love rain

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The simplicity of it. The truth of it. The way it does its job Well done rain. I applaud you. Job well done... Keep it up. Well, stop ...

Postmum Pat

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Two letters arrive at my old, old, old, old, old, old address. They contradict the emails I've had. They send me into the state of th...
Tuesday, December 11, 2018

I have cancer

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And it's one of the good ones. In the last month I've heard of two men who have prostate cancer. Oh, one of the good ones Kidney ...
Friday, December 07, 2018

Phones on a wall

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I remember the phones on the wall. It was a day in March. A month, that until then held no significant to me and will now forever be, the mo...
Thursday, December 06, 2018

It's always

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It will always be there. This doesn't go away and never will. Stoic and able to comfort those who need it. It's fine I get tumour...
Tuesday, November 27, 2018

You grow slowly

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Tonight I'm out at St Andrew's night. An annual event here. I saw people I haven't seen in a while. 'how are you?' V...
Tuesday, November 13, 2018

I don't want to

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I don't want to I don't what to chase I don't want to ask I don't want to know I don't want to stop I don't wan...
Saturday, November 10, 2018

I'm nothing special

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Some days I just can't believe what I'm juggling in my head. And there are people here who see and know that. But not my husband. ...
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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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