Operation postponed

I was all ready, bloody nervous but ready. I'd organised everything at work. I'd got plans in place for home. I did a big shop for the people in the house who would need to eat and I'd packed my bag. (a few times)
I set my alarm and said goodbye to my little girl and father. Then we went on the train and found our way to the right ward. There we sat and I had bloods done, blood pressure, temperature. I spoke with a lovely anaesthetist and managed to sort out my concerns about being sick

I met with one of the surgeons and he very kindly went through all  the risks - I hate that bit but oddly I felt better, less at risk. I got it; he explained it well. He drew an arrow on me  -  the letter R in the right place.

I got into my gown and stockings and had the wrists band on.

Then my husband went to get those that could drink and eat a coffee and we joked that that would be when I was taken down. I kissed him goodbye just in case and off he went. Then 2 surgeons I recognised turned up and we went into the side room.
No HDU bed.

They wanted to talk options. We  could wait (nil by mouth) until the afternoon but everyone would be pissed off, tense. They were pissed off. And so we agreed that it just couldn't happen. The fog perhaps had caused too many staff to be absent, too many new patients, accidents and people who really needed surgery or they would die, they wouldn't last another night without the amazing NHS staff?

I got dressed. We went and got something to eat, I had a cup of tea.

Then I came home.

My prediction came true, I didn't die on the 11th December.

ready for a fight?

Ready for a fight?

The waiting is what nearly kills you,  never mind the cancer. And this time the cancer in my genes is sitting waiting to piss me off.
It is so different this time, having a daughter makes this process so very very different. Before I realise that all I worried about was me, what would happen to me, how would I feel. I don't think I really thought about my family. I was of course conscious of them but the focus was me. Now, each time I hear a new piece of information I think of her, I worry more about the impact on her. And each time I feel so blessed that it stopped with me, she, oh thank all you can thank, she isn't cursed by VHL.
And just to add to it that ominous knowledge that the pins and needles I am feeling more and more often might just be the next battle. The fight continues.

It's so hard to explain to others that this is an on going fight. Even other cancer victims don't really understand.

For a while I was convinced I was going to die, and soon and during the operation. The bleeding out, the cut that finishes me off. And I now need to trust, I need to believe and I need to get ready for a fight. My last day on this planet will not be 11th December. My last day is a long way from here.

My last day is not soon.

Limbo

The waiting, the horrible endless waiting. It's been a year since I found out that the little bugger is growing and all this time I've wanted it out.
And life has been a bit of a fug since. I don't know how I felt last time, last time I wasn't a mother and last time the risk was mine alone.
Now what do I do, how do I look after myself and be selfish like you need to be when I need to be strong for my baby girl?

This is the hardest, since the 'life expectancy letter' it has been so difficult. I carry on of course, I work and I play.

I've begun writing a diary to my daughter, in case.

Operation number 7

It feels very different this time. I have a 5 year old I need to think about and although it means I have no chance to show I'm worried at home I am more worried than I have ever been before.

I have been told it makes sense to prepare. I suppose all parents should but the advice was given with care and terrified me. I'll write her a diary and use it to give her memories I might not be around to express in person.

Having children makes you contemplate your own childhood and I had a great one until high school, where some bits were really shit. There were some bad memories from when I was younger but actually overall it was great and now I type that, high school had some fantastic bits too.

Making Memories

I went on a school trip. I had to leave my little girl behind to make it happen, well it would have happened without me but I wanted to be part of their memories. I made them be in a group picture; "you'll thank me when you're older" I said to the girls and boys who didn't want to be in a picture, didn't have the confidence to see themselves there.
Making memories is really important to me, having things to look back on and feel happy about, to feel proud of. Life is after all a collection of memories...

First sight of a cortisol crisis

A couple of weeks ago I saw, first hand what it looks like when my dad has a cortisol crisis. No blood or passing out but he suddenly, and I'm talking minutes, got very cold, blue lips and finger tips, shivering. As luck would have it we were already in the hospital for a test and so I went to get the Dr, the one that had seen him just half an hour before.

He had an infection, something that most people would simply overcome but for my dad it knocked all the cortisol out of his system. I sat by his hospital bed for hours then, telling him gently where he was and what was going on, and then telling him not so gently that we needed to get blood from him. I had to be firm. The NHS so often gets critisied but for me they continue to show how much they can do.

I was struck, as I sat there, how few staff were on but how important it was that they were there, how busy different people were on the ward we were on. They get paid, like all public servants but they don't get loads and they saved him.

My dad has been saved lots of times and I know he still isn't sure if he should be sometimes but when I get a text from him that makes me smile or I hear him bash into a wall  on his way to the toilet in my house I know he still has something to give, give to me. He is my dad and I love him.

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?

 

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 to get her there she will be thinking of me, my dad and our brother. There are memories that will push her through; like the time they locked down the ward after I had had brain surgery because Myra Hindley was also having brain surgery.

My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.

We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.

Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.

We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.

So please give a little because the finish line should be hope and a cure which we can’t get without money!

UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning

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 experiencing a crazy moment have enrolled myself to run the London Marathon on 17th April 2011 with all monies raised through my kind sponsors going to VHL charity. Although I myself do not have the gene both my dad and younger sister have (as did my younger brother who very sadly passed away nearly 15 years ago aged 22) so have experienced first hand the physical, emotional & psychological effects it has on those who have the condition and those who love them but don't.

Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!

Nothing I can do can take away my dad  and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"