13 October 2011
A lot to say :)
I've had such a busy week that I am having to think about what I told you last time (I can't see what I wrote when I do this).
I think it was my Grandad's birthday and we all went out for a meal which was nice to be together but our meal was horrid. I made Grandad a photo album of mainly me and Milly and he loves it. Mum had got him a Emma Bridgewater 'Papa Bear' mug cos thats what she calls him lol.
The day after, I went to Alder Hey and I had my scan as well. The new drug has been helping massive amounts on my chest areas but the cancer is just not playing and it is growing new lumps in my neck. So I don't think that there's anything else really, unless they blast them with more radiation or something? I've had radiation before but not on my neck so maybe they can do that.
After Liverpool, we went down to London and the train was a nightmare. We missed the first one so that was our fault but the second one had no seats and then the man on the train told everyone to get off at Preston as the line was closed further down, so we got a train back to Oxenholme to get our car and by the time we got back, the line was open again! Anyway, Kevin at Oxenholme put us all in first class and I slept almost all of the way cos I was so tired, but the seats were nice and comfy. We arrived at our hotel, The Mayfair, after midnight and it was really posh. There was a bit of a mix up with our room so we got upgraded to a suite and it was amazing - it was bigger than our house. On Friday daytime, we all loved the rooms so much that none of us went out!
At night time it was the Inspiration Awards and everyone came to our suite for drinks before we all went. When we got there, we stopped the taxi and sneaked in the door at the side so I didn't have to go through the cameras lol. It was a lovely night and I met Beverley-de-Gale who is such an inspirational lady - I'm going to add a link somewhere. I was really nervous so I was glad my category was first, but I still couldn't believe it when I won. I was terrified so I ran on and took it off Jay Bothroyd who was presenting it and then I ran off again. But when I went backstage with him we laughed about it, I said I didn't know what to do and he was really nice. The singers were amazing and we all really enjoyed listening to them. We met Sky who is the founder of the awards (he is dead dead funny). Then it was Milly's turn to find out and I was really happy that she won her category too. She was much better than me and managed not to fall over in her huge heels and stood on the stage looking really good. And Mum said I've not to really mention this but that doesn't normally stop me, so (ha ha). Sky went on stage and started reading about this amazing group and we were all just listening and then I heard dad go oh no, and then Sky called our entire family up for a special award. Mum's face was so funny and she couldn't even talk properly on stage. After that Mum was dead excited to hug a lady we met backstage and I didn't have a clue who she was, and mum was like, what, you must know who she is! It was Annie Lennox (I've looked her up now, doh).
The next day, we had to go back to our life and move from the very posh suite to the Premier Inn at Euston lol. Our room there was about as big as the bathroom in the Mayfair, but it was fine and staff were really nice too. At the awards, Dad promised me and Milly a treat and so we asked to go to the theatre. We wanted to see War Horse but the only tickets we found were really expensive and so we ended up going to see the Wizard of Oz, which was brilliant and we all really enjoyed it. We got the train back up on Sunday - the Virgin man at Euston was so unhelpful when we tried to sort out getting on with my wheelchair, but then a lady told dad to go to mobility services and they were really helpful and smiley with it! We arrived back into Oxenholme to the smiles of Kevin who had waved us off on Thursday. I enjoyed visiting London but I was glad to be back in Cumbria!
On Monday we did a radio interview at like 6.45 and I went blank and there was this silence on the radio and mum had to help me. Then, I was back down to Alder Hey and neither of us felt like the long drive cos we were so tired. Although my scan wasn't really good news as such, I feel so much better at the moment and they've decided that I can finish off the stocks! So I had one on Monday and I have my final one in two and a bit weeks and then, if there's no radiation, I guess that's it.
I've only just got up today because yesterday was one of those days and the first thing I've opened is a gorgeous huge card from Emily, congratulating us all. It's so funny that I'll try to scan it onto here.
One of my missions at the moment is talking to any card companies that want to help me gain more bone marrow donors by raising awareness through their 18th cards, and I'm really happy that both Hallmark and Clinton cards have been in touch with me. A few others have been in touch for more details but a lot haven't - I'm waiting!
Next week, mum is taking us off for a break with the THHN and we're staying at a place called Finlake. Dad has to work, but I can't wait and I'm taking lots of DVDs and planning some duvet days lol. I will update from Devon and when I get back I won't have long until I can share with you my really big news. No, it's not a cure for me, but it's something that means so much to me and I'm hoping that Cumbria will support me!
Posted by Milly ... for Alice x