22 December 2012

Happy Christmas

Hello everyone. This is a really quick blog because the computer isn't good for my eyes!
I must be the Royal Marsden's patient from hell, because every time I appear, something has happened on the way there and then they have my original problems plus a whole load more to sort out. I've become really sensitive to light and I have hardly left my bedroom for the last few weeks. It's easy to avoid at home as I just turn the light off, but at hospital or in service stations, I can't cope with them and it's hard to get away. Today, for the first time in ages, I've been out of bed for a couple of hours so that's the right way :)
It was my birthday a week ago today and I spent it in bed because I really wasn't feeling good. My best friends came around and I can't really remember them being here but my Mum said that they all came and sat with me in the dark in my bedroom (I couldn't stand having the light on). So it wasn't a brilliant birthday, but at least I'm here!
I did get to Center Parcs this week, but I only got a day there because we had to drive down to Surrey to the hospital. We had booked Center Parcs a long time ago and tried to change it but couldn't, so we didn't want to completely waste it.  I wasn't really up to going out, but it was nice to look out of the window at all of the trees and the weather was miserable which was good for my eyes!
I've got to go now but hopefully I'll feel better next week and I'll post some photos and do a proper blog.
HAPPY CHRISTMAS everyone and thank you for all the baubles you've sent me and the Lush bubbles and the crafting stuff!
Lots of love, Alice x

11 December 2012

December AGAIN

I'm not quite too sure how I've made it here, but here I am and it's definitely December. Life just gets busier and busier. I'm now down at the Royal Marsden every week and every little bit of it is wonderful because they are just brilliant (well, it's as wonderful as hospitals can be if you get what I mean). The only thing that is getting us down is all the driving and on Friday, it took us 7 1/2 hours to get home which makes me feel so uncomfortable sitting still for that long. But mum said she doesn't mind as long as she's got some caffeine in the car, choccy and a good CD! She was singing all the way home which would be fine if she could sing, but she can't!

Last week, let's just say that something happened on my journey down to Surrey and lots of people bothered to help us out. I don't know everyones name so I'll just say thank you to the lovely teacher from Keswick School, the staff at the M6 toll services, the ambulance men and Mr Peet and everyone at Birmingham Children's Hospital. And I'm fine now!

My #OneLifeLiveIt hashtag reached over 9 million people on Twitter which was amazing and i must say thank you to Glen for that. I hope that Olli was watching. Every time I think of him, I remember the story teller - it wasn't meant to be funny, but it was one of our funniest days in hospital and his mum will know exactly what I mean. Quite a few tweeted to say they were joining up to the register after my tweetathon and a few emailed my website for more information about it, so that was good. I still think it would be great if every 16th and 18th and 21st card had a message about bone marrow and organ donation on it. It's such a perfect way to get the message across!

Last week, I got to order the holiday home for our charity. It's called a Willerby Winchester and it's really nice and the best news is that it will be here before the end of January. So we have time to think about what we need to put in it and then it will be ready for the first family in March. It's incredible that in less than a year, we've set up a charity and fundraised enough to buy one caravan and get part way towards another one. It's really important to be able to buy the caravan because although our accommodation providers are really good, they don't really have any availability in the holidays and that's when we have lots of people wanting to come away. So now we can offer a cosy cottage in the winter, a bit of hotel luxury in the autumn and a holiday caravan in the summer!

I can't believe that it's a year since my sweet 16 when my friend Tracy from New York sent me to the Lakeside for a night - I never thought that I'd get to be here for my 17th, it's just amazing that I am. It's my birthday this coming Saturday and then next week, we're going to Center Parcs for a break. When we booked it, we didn't really know if I'd be here but we've gone there for years at this time, so we didn't want to change.  But because it's us, nothing is simple and in the middle of it, I've got to go down to Surrey LOL. We're trying to work out if it's possible to do it from Penrith on the train with a wheelchair ... without anything major going wrong. Probably not! Otherwise I'll only get a day at Center Parcs before I have to go to hospital. If I do only get a day there, mum said she'll look for a last minute one in January and I guess it's more important to stay alive right now!

Right, I've got to go because I'm leaving for Surrey right now. Feeling okay today but still quite sick so I'm hoping that mum doesn't sing and I can get some sleep in the car LOL.

Love Alice x