My LIst

1 Brain
2 spine
1 optic nerve
2 kidney
1 tail of pancreas
oh and 1 liver

want one anyone?

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 risky because even the slightest nick would result in a haemorrhage.
I only saw the specialist for a few minutes and after I recovered from hearing news I didn’t really want to hear I now have lots of questions and no one to ask so on the off chance you can help I’m asking this help group.

Q. If a macular hole remains untreated can you eventually loose all of your vision or does it only reach a certain level?
Q. Is it dangerous to leave a macular hole untreated?
Q. Is the only way to stop a haemorrhage to corterise the site?
Q. If there is a large haemorrhage in an eye is it visible from the outside?

update on this -
 Only reaches a certain level

nope - well I have to be aware of retinal detachment

Kind of but haemorrhages are not such a big deal, the blood is reabsorbed.

no, well not little ones

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 to be possible I realise how much he is missing. But my daughter doesn't know any different and as a result it seems to me that they have the best relationship out of all of us. She doesn't have any false expectation of him, she's only ever know who he is now and she loves him completely.
They get on, both as daft as each other. He winds her up; she winds him up. They play together and he is a proper granddad who does granddad type things.
So I miss parts of him that he misses but at least they are both enjoying their time together.

Fit and well

The scar on my forehead is from when I tripped as a child so not VHL related. 

My baby

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

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't have good balance.

An interesting thing to keep doing...
sums him up
falling down, getting up again : repeat

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 only one amazed by this. I can't be the only person who thinks 'too good to be true?' But maybe there were those who said that about paracetamol and the pill.
So once more my father will experience something that no doubt I too will one day endure and I am so grateful to him for being willing to do it. He does have a choice here. Some choice! I wonder if it (the tumour) were more deadly and by that I mean speedily so and not slow, eventually after horrendous pain and suffering and destruction of so much more, leaving only your soul to whittle away, just fast. If he would be being treated. I've gradually come to terms with the idea that for all the normal reasons my dad would probably prefer not to be here. He's apparently happy he has been this last year, a year since he tried, a year of wondering if he will again but that too has subsided.
He is here and part of my life and accepting the changes as best he can.
It is so hard but easier for me. I'm here. they are there.
I know I'll stay here, I stay selfish. I won't try to be 'a better daughter' I'll be me... and I'm always be grateful my dad was able to go first and that my daughter won't have to wait her turn.

gamma knife

Dad's going to have to have some gamma knife done... watch this space

My Little One

Isn't she wonderful?