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.

Showing posts with label kidney cancer. Show all posts

Showing posts with label kidney cancer. Show all posts

Friday, November 10, 2023

Time to go...

There is a clear theme when you have a disease like VHL... waiting. Waiting for appointments, waiting for results, waiting rooms, waiting ga...

Thursday, August 18, 2022

Thank you VHL alliance

I waited until I was back from my holiday, despite the temptation, to ask for the scan report. It came back within the hour. That was impre...

Monday, December 31, 2018

Fuck off to Disneyland.

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...

Sunday, December 16, 2018

Postmum Pat

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...

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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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