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...
Tuesday, December 11, 2012

Happy days

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I don't let myself dwell on the VHL facts of life - at least I try not to. But you can't always help it. When I was at uni, a hea...
Friday, November 02, 2012

Devilled Kidneys

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One more to add to the collection and I'm being monitored. But bloody well done NHS, honestly what would I do without it. We had a pan...
Thursday, August 23, 2012

VHL wars

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Something strange is afoot here in England town. The VHL community as it is in the UK seems to be having a hostile takeover. I've no i...
Monday, July 30, 2012

Out and not cancer

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All done and he doesn't have cancer. It's hard to explain but it was very difficult to be by the bedside for so long. Difficult in...
Tuesday, July 10, 2012

Pancreas out - well not all of it

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My dad did well today. He let them take out his spleen and most of his pancreas and the tumour to go with it. He is awake and at times smili...
Monday, June 11, 2012

what would you do if time ran out at 49?

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An odd letter came for me today. Those of us who know, know that the print from your hospital when you don't have an appointment due is...
Friday, June 08, 2012

List of tumours to date Lovely VHL

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1 optic nerve 2 spine 1 brain 1 liver 1 pancreas 2 kidney 8 then? Well that's what the last set of scans said but you know how th...

Do you remember the Hatfield-McCoy Feud caused by Von Hippel-Lindau

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I saw something on this the other day, funny how it seems to still be a myth. Anyway I wanted to do a different post because I wante...

Merry Christmas

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I hope we all have a healthy 2012. Each year, for as long as I can remember, has had some VHL related moment in it. Each time the ball dro...

Who needs a spleen?

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The next stage in the saga of the family's health. Dad is having surgery in July; that is of course if that makes sense and as yet we ...
Sunday, April 08, 2012

Adoption

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we are not sure yet and we really don't know if this will be the right thing to do. Just thinkingabout it at the moment. Should we?
Friday, April 15, 2011

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Sunday, March 20, 2011

Virgin London Marathon

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I was thinking of my sister running that far and the stamina it will take, the conviction and commitment to get to the end. She told me that...
Friday, February 25, 2011

A note from my sister

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This is what my big sister wrote "I am not what you would call a natural runner or even an enthusiastic one at that, but after experien...