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, June 05, 2016

HAPPY

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Relaxing

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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

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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?

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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

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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...
Wednesday, April 27, 2016

Another appointment

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They roll around, appointments but this time my anxiety levels are peaking. This time my spine, this time I'm nervous of the hidden. ...
Saturday, April 23, 2016

When are you fully recovered?

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This week has been a test for me in terms of my inner strength and ability to cope. And today I'm knackered... Do I suck it up and go to...
Tuesday, April 05, 2016

Decided

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I had an email today saying that although I had leadership potential I'm not on the course. I was relieved. I was hoping that would be...
Sunday, April 03, 2016

Let the fates decide

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It's holiday time... I'm on holiday at the in-laws. All very pleasant and relaxing. I'm happy not to be at work and to be heal...
Friday, April 01, 2016

I am drunk

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Tonight I went out with my skating peeps. I considered friends as a label but it isn't quite right. It's tomorrow already and I...
Monday, March 28, 2016

Breaks my heart

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I'm home for Easter, just a couple of days. We had lunch today, the youngest of the family, my husband and I put the food out. So far so...
Saturday, March 26, 2016

Feeling a bit sick

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I don't feel 100% today, end of term and a few too many the night before last, my little one has had a fever. So this feeling is complet...
Tuesday, March 22, 2016

Time and a diary

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I write a diary to my daughter. I started it when I was told I had kidney cancer and that the operation was a difficult one. A nurse suggest...
Saturday, March 19, 2016

The difficult week

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This week every year is hard, the hump in the road that I know I have to get over. It was even harder this year, I woke up on the 15th kno...
Monday, February 15, 2016

I thought I had a lot to say

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Have I really been changed or am I simply already back as I have always been? What makes me happy, should I be striving for that or are we ...
Monday, February 08, 2016

A different body

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I've been back at work almost a whole half term. My body is getting used to the stress and strain of the job again. Lots of walking, lo...
Thursday, January 21, 2016

Who would be a parent

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I refer you back to 'Be the Verse' so painfully true. It does me good in my role as a teacher to be on the other side, to sit in ...
Sunday, January 17, 2016

It's snowing

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There is snow on the ground, I called for my daughter to come and see it, I still get excited at the first real snow of the year and so did ...
Sunday, January 10, 2016

It's all about me

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What a week, much like others I have had but still I think remarkable. I went back to work and survived, but the bit that won't leave me...
Monday, January 04, 2016

Phased return

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Last time I went back to work after surgery it was quite straight forward, I'd only missed 3 weeks and my job was much more contained. I...
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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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