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

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.

contradiction

I watch 'Ugly Betty' I know but it is escapism. I have hiccups right now and have decided to watch ‘House’. This is my Friday night viewing when my baby is asleep and my love is out, i may be a bit lame but I’ve been upset by what I see. I want Dr House to fix my dad’s case and I have to remind myself that the only way the episodes work is that someone already did.

Dad isn’t fixed yet and then Betty, dear, all good, well meaning, horribly moral Betty is letting her family down. She is letting them down because she is prioritising her life above that of her parent. Now this rings true, I too could move back home, could support more, could ask my newly formed family to change, I could not live the life I have been truly enjoying to ‘be’ with my father but I don’t want to. And to comfort me I think, believe, know that my father doesn’t want me to give up on any of my life either.
Now I am a mum, now I see what she wants I find it very hard to say no. Of course I say no, of course I avoid giving in to the obvious bad habits (which includes TV which is hypocritical because of the addiction to TV I have myself) So in short... I’m not moving home, I’m planning to live this life and I will sacrifice much for my baby and I will love my dad, my mum, sister and all of them from here.
Am I wrong?

We love the NHS

If you do, and you tweet, please join the #welovetheNHS tweet spectacular
my eye tumour is ok,
my dad is ok
things are ok

eye eye

I just left a message with Moorefields eye hospital asking for my man to contact me, because the last few days I've had a dark streak across my vision in the eye with the tumour on the optic nerve. I've been here before of course. remember the toe... nothing came of that and if I blogged about every twinge I had I'd have gone mad by now and pissed a lot of people off. But I had that feeling tonight, one of oh well, could be worse.
I started to plan for an operation. I'm thinking, well it is slow at work and i'd rather be fit and healthy for the summer when I can spend some time with my little girl. I think it all became more obvious when We went for a bike ride and I turned to check that no cars were coming and I had to turn a lot because I couldn't see.
This streak has been there for a few days, i had an eye infection and it got gunky for a while but it isn't now and there is this streak. Now I feel stupid, now i'm thinking I bet it is nothing and you're going to waste more time and more tax payers money. Oh shit... I wish I had a medical degree, I hate this because I didn't mention my arm to anyone for months and it turned out to be a real, 'got to get it out' tumour.
Better safe than sorry?
Arrrghhh.

caring

The last three weeks have been difficult. I’ve been to the various hospitals that plan to look after my dad and I’ve cared. I hope and pray it doesn’t happen to me and feel such a swell of relief that it can’t happen to my child through VHL, but I have.

Putting a nappy on your dad and the n going home to pt one on your baby girl pushes irony to its limit. I fed him his soup, I have washed him I have helped him clean his teeth. I have listened to him try and articulate his thoughts and feelings.

My father is a wonderful man and he should have been loving this time of his life. He should have been able to relish his retirement. He gave all he could to his job and I never in all those years felt neglected or that his work came before us, ever. I was a very lucky girl because both my parents worked but I was always of the opinion that we, their children, were the most important people in the world. We still are. I really hope my child feels the same when she is 30 and 15 for that matter.
When are you allowed to let old age take the blame for what happens to you?

VHL is getting all the blame so far.

Well it deserves it.

Mum to be

The best thing about having this blog is making contact with other people, well ‘Steven’s Journey’ really. But it makes me feel less isolated. In about 6 weeks my baby is going to actually make her presence know and I’ll see her. So today when I read the other blog I visit most often I thought about a day when I may have to have a conversation with an 18 year old. It may not happen; well at least she might not have VHL and I pray she doesn’t but we may talk about me or granddad. My niece and my dad sat on my sofa and he explained what the operation was for. She took in her nine year old stride. So will my little one.

To Plan or not to Plan

How quickly things change. I’m pregnant!

Something I always hoped and prayed would happen. All those times I quietly swallowed tears when people assumed that I would be a mum one day, they never even thinking that I couldn’t plan it, we couldn’t plan it. 

And we didn’t. One night of recklessness and there you go. 

To quote my partner ‘He shoots, he scores’ So there we have it. A baby.

Oh my.

I’m sure I’ll have more to say about this but I’m still a bit stunned not to mention many more emotions like, nerves, fear and utter joy.

It is very early days and so we have to be realistic but that fact that we have told our families and loads of our friends already tells you how thrilled I am and no I'm not thinking about the genetic profile. 

My Big Toe

My big toe is tingly. I’m hoping that this is due to something like an in-growing toenail. The problem is that I know my dad’s toes do tingly things and I also know that tumours in various places cause that too. Now at the moment I am not feeling too freaked out about it and I’m actually thinking that my toenail looks a little rubbish and could well be the cause. And even if it is a tumour I’m thinking that it may not be something that needs fixing. I could really do with a pill that shrinks tumours, then I bet my partner would say yes to us trying for a baby.

Oh bollocks.

I suppose I should phone my G.P. and find out if my toenail is the culprit but I don't want to this week. 

I think I will wait until after my sisters wedding.

Dad's next set of tests are at the end of September.

Writing a will

I wrote a will when I was 17. 

It wasn’t a fully legal one with a solicitor or anything like that but I was thinking that now I’m a homeowner I should do a proper one. I’ve lost the other one, it was on the computer we had at my parent’s house. I didn’t have much to leave behind but I remember thinking about my diaries and any jewellery I liked. I think I was going to donate my violin to my old primary school. When I think about it now, I’d just have more stuff to give away and now it would go to my partner and then he’d sort out what to do. But that was the unimportant side of it, the important part was to help people who would be left know what my last wishes were.

When my brother died we didn’t know exactly what he would have wanted. ‘Not to be dead’ someone said at the time. I’m not sure that was completely true. If my brother got his way death is an adventure and he’s ‘still travelling’ as it says on his gravestone. What did he want? He mattered a bit at the time but I think we did him proud, as with many funerals of the too young the church was packed, standing room only and some people had to be outside. My uncle spoke about him and although I knew how great he was I don’t think everyone there quite realised just how great. He was cremated and some of the ashes were buried, some were scattered in other places. I want to be cremated and the ashes can be spread wherever you (loved ones left over) like. So what do I want? Well a packed church would be nice and my eulogy needs to sounds like the truth. And I want the truth to be that I have lived the life I wanted to and helped others while doing it. I’d like to think that I was a good enough teacher to warrant some of my students, past and present, turning up and I want to be missed. I’d like to think that I leave behind hope though. A grand idea I know but that’s something worth lasting.

50/50

It's a 50% chance of passing on my disease to any child I/we have

Would you take the chance?