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"

Happy New Year

I'm no nearer to a solution for the hole in my macular, one more specialist to see but so far it's has been a resounding - "probably better to leave well enough alone" and I don't mind, I'm getting used to not having that bit of site. Now I ask my husband to be
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.

Down on my meds too. only need 5 and 5 now.

so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle

My LIst

1 Brain
2 spine
1 optic nerve
2 kidney
1 tail of pancreas
oh and 1 liver

want one anyone?

Angioma and macular holes

I saw a second specialist today who said that I have PVT and that the tumour is sticking to the retina and so surgery would be extremely risky because even the slightest nick would result in a haemorrhage.
I only saw the specialist for a few minutes and after I recovered from hearing news I didn’t really want to hear I now have lots of questions and no one to ask so on the off chance you can help I’m asking this help group.

Q. If a macular hole remains untreated can you eventually loose all of your vision or does it only reach a certain level?
Q. Is it dangerous to leave a macular hole untreated?
Q. Is the only way to stop a haemorrhage to corterise the site?
Q. If there is a large haemorrhage in an eye is it visible from the outside?

update on this -
 Only reaches a certain level

nope - well I have to be aware of retinal detachment

Kind of but haemorrhages are not such a big deal, the blood is reabsorbed.

no, well not little ones

Sharing

nothing has changed

everything is normal

my normal 

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.

Fit and well

The scar on my forehead is from when I tripped as a child so not VHL related. 

My baby

My wonderful VHL free little one.
It is a good thing to be able to say, it is almost unbelievable 

My VHL free baby girl

the old fashioned way

This was how it worked the time before last

Dad and falling

It went well, but he fell over and now his face is quite a mess.
Small but significant up-date

Falling over happens a lot when you don't have good balance.

An interesting thing to keep doing...
sums him up
falling down, getting up again : repeat

Gamma Knife - coming up

it will be a week on Friday... The magic of sorting out a brain tumour without cutting open a skull. Takes about 20mins. I can't be the only one amazed by this. I can't be the only person who thinks 'too good to be true?' But maybe there were those who said that about paracetamol and the pill.
So once more my father will experience something that no doubt I too will one day endure and I am so grateful to him for being willing to do it. He does have a choice here. Some choice! I wonder if it (the tumour) were more deadly and by that I mean speedily so and not slow, eventually after horrendous pain and suffering and destruction of so much more, leaving only your soul to whittle away, just fast. If he would be being treated. I've gradually come to terms with the idea that for all the normal reasons my dad would probably prefer not to be here. He's apparently happy he has been this last year, a year since he tried, a year of wondering if he will again but that too has subsided.
He is here and part of my life and accepting the changes as best he can.
It is so hard but easier for me. I'm here. they are there.
I know I'll stay here, I stay selfish. I won't try to be 'a better daughter' I'll be me... and I'm always be grateful my dad was able to go first and that my daughter won't have to wait her turn.

gamma knife

Dad's going to have to have some gamma knife done... watch this space

My Little One

Isn't she wonderful?

No new nasties

It is a pleasure to say that I've just got back from my annual review and I'm able to happily ignore the twinge I had and the always bugging feeling that maybe something has grown. So, nope I'm free, free, free.

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

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

More news

A ridiculous week. Firstly my daughter turned 2, a big event for me and her. My eye is going to be fine, yes it bled, no need to do anything. Phew. My dad was released from one hospital only to be taken into another later on that week. And my partner lost his job. I left one school after 7years and then sort of started at the next.
You?

I was right

So an afternoon in Moorefields Eye Hospital can confirm that my tumour on my optic nerve has been bleeding. I'm back home and feeling fine except for lack of sight in my right eye and oh, the broken toe. I mean really, I was defending myself from a surprise attack from a dying bee and kicked a wall, it bloody hurt.

So back to my eye.

I know nearly as much as you do.

But I'll worry another day. today, ouch my toe...