The difficult week

This week every year is hard, the hump in the road that I know I have to get over.
It was even harder this year, I woke up on the 15th knowing it already hurt. I warned a colleague and cried on way to work. I got through the first couple of hours. Then I cried again, I sucked it up and got through another 2 and then I couldn't quite do it. A word of kindness at just the wrong moment and I was gone and for the rest of the day the tears fell.
They fell while I did my job, only in the cover lesson did I just about hold on. I cried watching my daughter swim. I cried silently while we drove home. I cried while I cooked dinner. I cried answering emails, I cried myself to sleep.
I cried because I miss my brother so much, I cried because I was relieved, I was sad, I felt alone, I felt loved and rejected. I cried for all these reasons and some more besides.

I cried because I couldn't have what I wanted.

Grief took me over for that day, and I let it because I was allowed on that day.

I need another day where I'm allowed to do that. I may have to wait until next year now.

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.

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.

the old fashioned way

This was how it worked the time before last

You don’t always get what you want

MARCH

Every one of these changes has left its mark

This time of year is bizarre. Ten years ago my brother died. Ten years ago I notice how warm the sun was on my face and I was glad I was alive. He wasn’t but I was. I took my life and I decided to make it worth living. I didn’t go to Disney land, I didn’t think about that side of life ten years ago. I listened to my uncle speak about my brother at his funeral and I knew that I wanted to have someone say things about me if I died. I didn’t want to be dead and have no epitaph so I set about living a bit more. You might not recognise it as such but that’s what this is. Take every moment and live it, even if it is crossing the street, cleaning the toilet, enjoying the touch of a hand, flirting, coughing, sleeping. As long as I’m not bored. I realised that I was bored and I don’t ever want to experience that again. Now if I feel boredom creeping in I get up and I do something, anything. 

I loved my brother and I remember him with love and fondness and I want him to still be here. I don’t want to be dead.

I still love him. When I’m at my most optimistic I think that he is still capable of loving me. I’m pretty sure he is the one who stops me having car accidents.

It is three minutes past ten