Moorefeilds, it's been a while

I'm supposed to go once every 6 months, I think it has been over 2 years. Cancellation and life getting in the way.
I'm not expecting to have any news, I'm actually expecting to be there for over 2 hours and then hear that they'll see me in 6 months.
Thankfully that's the dull part of this disease, the dullness of appointments and no news. We spend a lot if time bored, sitting through the dull of the dull.

Complain and complain. 

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.

eyes and eyes but no one is looking

just that I notice it and I notice it every day. Nothing will change I suppose.

ummm

It's all hospitals

It was a hectic week but dad is home now. Although he seems a little depressed; I think he expected to be better than he is by now. His balance seems to be better than before the operation but is speech is effected more now. If he slows down he's much easier to understand and face to face I get almost everything he is saying. It's a different story when it come to over the phone though. But things are getting better everyday and I'm so relieved; a bit emotional as a result.

I've had an MRI to make sure my lumbar region of the spine is tumour free so that I can meet with the anaesthetist for my C section and hopefully be awake and not have to have a general anaesthetic. As a friend of mine put it yesterday, it's all about hospitals and tests at the moment.

Not long to go now