Happy days

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 heavy VHL time for me I wrote a monologue short which I was quite proud of at the time. The girl I got to perform it, (she was old enough to be a woman but as I on'y felt like a girl and I am older than her it seems ok) was beautiful and thin. A friend who came to see it said she thought it was about anorexia. I didn't explicitly mention VHL, you need to let your audience see their own life not yours, I wasn't trying to educate anyone on the life with a rare genetic disorder I was just trying to express the strangeness of feeling like your own body is your enemy, that your very cells fight you.

Devilled Kidneys

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 panel and we got great care.

I did the usual email to those people I assume care and want to know. I wonder if they do or if they roll their eyes and think, god she is all about herself.

I always make it sound as positive as possible and try to sound upbeat about whatever the news is. I wonder why I do that.

Dad is as is is, no change

All carries on.

Umm, opertation?/?/???

grrrrrrrrrrr

VHL wars

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 idea what's going on but I'm interested.

"What do groups do for you?" My mum never wanted me to be a member of any group but there I go on Facebook and other places to hear what others, like me know about it all.

Why do we do it?
I always felt so very alone when I was a teenager and at a drunken night near a computer with internet access I searched. I'd never done it before I didn't know it would exist out there in the world wide web but it did and there was so much information. I was at university at the time. I hadn't used a search engine for much before.

And now I wait to know the next steps of information.

Does it help. Dunno but I don't think it harms.

Out and not cancer

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 ways I hadn't expected.

Pancreas out - well not all of it

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 smiling.
Phew, phew and phew.

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 likely to take your breath away.

I have a new Dr now and I've asked to know my life expectancy. Not because I want to know but because for our plan to adopt we need to be able to tell any adoption agency (at least all the ones we have asked)

I have always been aware that I don't technically have as long as a 'normal' person but I assume that would be about 65. When our current government changed the retirement age I wondered if I would ever get to it. My father has had to through ill health. Money wise thank god he had his pension because he needs it. Will I see retirement, not according to the medium life expectancy?

I quote

"The actuarial life expectancy of patients with Von Hippel-Lindau is 49 years of age. More recent data suggests that those patients enrolled in the screening programme can expect a life-expectancy of 52 years median." There is more, about renal cell carcinoma which I don't currently have and now I might live longer...



Shit.

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 these things are, I may well have grown a few since then.
I even forget some of them now. I bit like distant sexual encounters!

3 removed

So that's 11 in total.
"Count your blessings not your tumours" Someone said that to me... I didn't expect them to. I felt like telling them to fuck off because I'm not counting my tumours to feel sorry for myself, I'm doing to prove how strong I am.

And I am.

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 wanted to talk about me!

I've been using Facebook forum on VHL a bit too much and I wondered if I should, my family are connected to that and then I remembered I could express myself here and not worry but hope - I don't know why - that some people will read it.

I was having a drink with a friends last night and we were talking about lots of things but VHL came up and she said she never thinks of it when she thinks of me. I was really pleased. I hate the idea that all I am is my genetic disorder.

I am not.

I bloody hate it all the same. I feel like a time bomb.

When will I next need surgery and when will it happen?

GRRRRRRRRRRRRR

Von Hippel Lindau is horrible.

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 drops we all hope that it will be a VHL light year, but the truth is of course that there is no such thing these days. Dad gets worse, mum and dad find life harder and harder, my sister does too.

I hide here in London and only look when I have to.

Other families have their trials and some have their tragedies. I think everyone must be quite bored of us. There must be a "oh, what now?" as they open the group email from my mum.

She used to use it to get discounts on shoes... ask me later.

"You've got to get something from this fucking disease." Shoes!

What do I get from it? Determination maybe, I got over my fear of anything new, I decided to live my life but I envy those people who didn't need a dead brother, a broken body and a genetic disease to manage it. Those people exist don't they, naturally determine people who make waves, make changes, make life for themselves and others.

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 don't know if it does. Those of you who know about the pancreas will also know that once it is gone for there is very little that can be done. The tumour that started in the tail of his pancreas is now very big, last scan it was 5cm. So who have surgery or not... not my choice and it would appear not really my father's either.

They will have to take out his spleen too. I'm fascinated by the fact that in these modern times you don't need a spleen. 1 extra little tablet will be added to his massive load anyway.

I'm in a spiral again. I'm trying not to dwell and not to let myself feel too caught up in it but I wonder most hours if he is going to make it through. The worst thing is I know that part of all of us, dad, my sister, my mum and me are aware that if he does die, as horrible as this sounds that may not be the worst outcome.

I don't want my dad to die but I also know how miserable his life is at times and I don't know how much more he could cope with. His body isn't his own, his life isn't his in so many ways and if he gets to be free again, well. I don't know how else to express it but I don't know how much more any of us can do.

This disease has made us all strong and weak at the same time.

My mum has to go through so much.

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?