Monday, June 11, 2012

what would you do if time ran out at 49?

›
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

›
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

›
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

›
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?

›
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

›
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

›
 
Sunday, March 20, 2011

Virgin London Marathon

›
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

›
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...
Sunday, January 09, 2011

Happy New Year

›
I'm no nearer to a solution for the hole in my macular, one more specialist to see but so far it's has been a resounding - "pro...
Sunday, November 28, 2010

My LIst

›
1 Brain 2 spine 1 optic nerve 2 kidney 1 tail of pancreas oh and 1 liver want one anyone?
Thursday, October 14, 2010

Angioma and macular holes

›
I saw a second specialist today who said that I have PVT and that the tumour is sticking to the retina and so surgery would be extremely ris...
Sunday, August 22, 2010

Sharing

›
nothing has changed everything is normal my normal 

Being normal

›
I've spent a week with my dad and his disabilities. We do all take so much for granted, such a cliché now but when I think of what used ...
Monday, August 09, 2010

Fit and well

›
The scar on my forehead is from when I tripped as a child so not VHL related. 
Thursday, June 10, 2010

My baby

›
My wonderful VHL free little one. It is a good thing to be able to say, it is almost unbelievable 
Monday, May 10, 2010

My VHL free baby girl

›

the old fashioned way

›
This was how it worked the time before last

Dad and falling

›
It went well, but he fell over and now his face is quite a mess. Small but significant up-date Falling over happens a lot when you don...
Tuesday, April 20, 2010

Gamma Knife - coming up

›
it will be a week on Friday... The magic of sorting out a brain tumour without cutting open a skull. Takes about 20mins. I can't be the ...