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, September 25, 2016

Shaking lettuce

›
As I stood over the sink, shaking off the excess water from the lettuce, I thought of my dad. It's how he did it, when he could. He was ...
1 comment:
Friday, September 16, 2016

I've got a headache you've got a brain tumour

›
A new colleague and potential friend, today uttered the phrase in my heading. I'm an over sharer, well I share a lot but I'd hoped ...
Friday, September 09, 2016

Someone I care about is unhappy

›
In my bid to address the life/work balance I have noticed that lots of people I love are sad because they don't know how to get it. The...
Tuesday, September 06, 2016

If you let it, it would never stop

›
Near death, or worse, near potential rubbish ruined life, tends to lead to a cliché of visits, trips, striving forward... I'm no excepti...
Tuesday, August 30, 2016

Back to work

›
Well here we go Back to work today... Just a meeting but I have to be on form... I don't want to right now, my time of focus on my dau...
Monday, August 29, 2016

Endometriosis

›
I've got that too. I found out a few years ago, I had asked for investigation, because things had just silly having previously assumed ...
Wednesday, August 24, 2016

Penn Y Ghent

›
Yesterday we set out to relive a moment in my father's past that meant a lot to him. We, a party of 9 in the end, for his 4x4 wheelchair...
1 comment:
Tuesday, August 09, 2016

It's a no VSO

›
I got the following email today, it was going to be my next chapter, it was going to be a way to take a different direction. Now I have to ...
Friday, August 05, 2016

And now it's goodbye

›
Appointment started at 2:15, drops and two scans done in relatively quick succession and then over 2 hours wait to see a doctor. For those ...
Thursday, August 04, 2016

Moorefeilds, it's been a while

›
I'm supposed to go once every 6 months, I think it has been over 2 years. Cancellation and life getting in the way. I'm not expecti...
Friday, July 29, 2016

I'm angry now

›
It's the summer and, as I've mentioned time to relax, heal. But I'm just a bit too angry. I'm cross with the year I've h...
Thursday, July 21, 2016

Settling into normality

›
The all clear and the end of term. There will be lots of not doing much, seeing if I can heal mentally and do a bit of working on the physic...
Tuesday, July 05, 2016

›
https://vhl.org/about/resources/vhl-facts/
Sunday, July 03, 2016

A sad day

›
My uncle died yesterday... he had cancer. Nothing to do with VHL. It's very sad. Cancer gets there, doesn't it.
Saturday, July 02, 2016

All checked up and burden free

›
Dad and I had our annual review and phew, no surgery planned for this year. I know that this might change. Last year taught me that the very...
Sunday, June 05, 2016

HAPPY

›
https://scontent-lhr3-1.xx.fbcdn.net/v/t34.0-12/fr/cp0/e15/q65/13342287_10209732071367443_335868103_n.jpg?efg=eyJpIjoidCJ9&oh=e05112f52f...

Relaxing

›
A year ago I had a week off and still felt like shit.  This time I had enough energy to get home and go skating Times, they are a changi...
Wednesday, May 25, 2016

Climbing Snowdon

›
My dad just text me to ask if I'll climb Snowdon with him. I said yes straight away. The logistics will need sorting For example how t...
Sunday, May 15, 2016

Why worry?

›
People worry about me. I've heard it a lot, more so recently. I worry me. Should this disease have more of an effect on who I am? Perha...
Friday, May 06, 2016

Negative bucket list

›
At the pub, with my favourite colleagues, I was amused by the way the conversation went. I'm aware that when someone names a generally...
‹
›
Home
View web version

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?
View my complete profile
Powered by Blogger.