Sunday, September 27, 2015

Applying for funding

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It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive....
Monday, September 14, 2015

Melt down Monday

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Had a wobble today, the straw that broke the camels back? It was incompetent staff, a waste of my time and their intellect. It shocked a co...
Thursday, September 10, 2015

Hiccups

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I've got hiccups. I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more...
Tuesday, September 08, 2015

zap away

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We met with the man... dad and I and we have both signed the consent forms. The big yellow sheet that means you understand that you are lett...
Monday, August 31, 2015

You shouldn't look up side effects

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In a bid to be prepared for my consultation I referred to the trusty internet and as always went to Cancer research and NHS as I feel I can ...
Saturday, August 29, 2015

Home alone

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I'm at home on my own which is rare now that I have a little girl. She has gone on an adventure with her father and I'm staying put....
Wednesday, August 26, 2015

A down day

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Letters arrive for those of us with VHL on a regular basis. Appointments, follow ups scans. In these days of electronic communication it is ...
Saturday, August 22, 2015

Counselling

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I've asked for some. At first I thought it was a sign of weakness, despite giving others the advice to get some but it has been along t...
Friday, August 21, 2015

My mother

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My mother has started a blog, she was going to write a book but I encouraged her to do a blog, faster and more accessible. So if you want ...
Thursday, August 20, 2015

Tragedy is my shadow

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Today was GCSE results day. And strangely was also the funeral of an ex-student, there on site, in my new school. It's a tragedy, a gi...
Friday, August 07, 2015

Telling your child you have a brain tumour

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I'm posting a lot today as I've been saving these up. We discussed telling our daughter of the latest news and I decided it best t...

Current list

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Only if you are interested 1 cerebellum brain tumour - near brain stem 1 resected cerebellum brain tumour 3 spinal tumour 1 optic nerve...

Relentless

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This disease is relentless, well it certainly feels it right now. https://vimeo.com/118914870 As William Dafoe  makes clear, getting tol...
Monday, May 12, 2014

Kidney Cancer no more?

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Post op check up today and good news, no more cancer, well not in the kidney. That's the issue with VHL isn't it. No matter how happ...
4 comments:
Thursday, December 12, 2013

Operation postponed

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I was all ready, bloody nervous but ready. I'd organised everything at work. I'd got plans in place for home. I did a big shop for t...
Tuesday, November 26, 2013

ready for a fight?

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Ready for a fight? The waiting is what nearly kills you,  never mind the cancer. And this time the cancer in my genes is sitting waiting t...
Tuesday, September 10, 2013

Limbo

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The waiting, the horrible endless waiting. It's been a year since I found out that the little bugger is growing and all this time I'...
Friday, June 14, 2013

Operation number 7

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It feels very different this time. I have a 5 year old I need to think about and although it means I have no chance to show I'm worried ...
Monday, May 13, 2013

Making Memories

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I went on a school trip. I had to leave my little girl behind to make it happen, well it would have happened without me but I wanted to be p...
Saturday, March 09, 2013

First sight of a cortisol crisis

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A couple of weeks ago I saw, first hand what it looks like when my dad has a cortisol crisis. No blood or passing out but he suddenly, and I...