30 September 2012

Bits and Kili trekking

There's lots of changes this week.
I was back at hospital at the beginning of the week and the chemo I've been trying isn't doing any good and the tumours are all growing, so we've all agreed it's best to stop that and we're going to give radiotherapy another go. So next week I go back to hospital and get to see Freda again (my consultant from Clatterbridge) and look at planning that again. It will be a bit weird to go there 3 times!
Of course, that means that my mum and dad couldn't both go on the Kili trip which I felt so sad about and they were really sad too. They have been planning it for about a year and so it was a bit of an upset for all of us. My nan and grandad would of taken me but my mum and dad were worried that things often change at hospital and so they couldn't risk putting that stress on someone else.
So my mum has gone and right now she's somewhere on Kili and I hope she's having a good time. She has managed to send a couple of texts so I know she's okay but I think that mobile phone coverage probably isn't the best out there LOL.
Anyway, wanted to update you all and let you know that I'm trying a different treatment. I don't mind radiation that much - it just makes you tired and my throat was really sore last year but other than that, it wasn't too bad. Plus I got to meet some lovely people.
Okay, please follow my twitter account @alice_pyne and @alicesescapes if you want updates on all of our Kili trekkers. I can't wait to hear all about it and then I'm hoping that I'll be off caravan shopping :)

16 September 2012

Summer time LOL

Yes it's supposed to be summer but we should have got a waterproof parasol cos then it would be useful lol. It's done nothing but rain and rain - it's rained so much that the grass isn't green anymore, it's mud!

I've been so busy the last month that I'm a bit late updating again. Sorry about that, it's quite hard trying to fit so much into the limited time that I'm actually awake! It would take a normal person about 2 minutes to do a blog entry but it takes me about 2 hours cos I keep changing bits and remembering more and sometimes I even fall asleep midway. So I'm not the best blogger but I'm trying lol.

When I got back from Vancouver, everything went mad and people made a big thing about me ticking off the whale watching. I think that they kind of expected me to drop dead there and then just because it was all done but I've got to tell you that I've got another list I'm working on. But this list is in my head and then no one will no if I ever get to do everything on that one! I had such a wonderful time in Vancouver that I don't think anything could ever be better than that, but I do still have some pretty important things to get done.

Loads of people have been doing fundraising things for my charity and I want to say thank you to all of them. I'm worried that I'll miss someone out if I start putting names down so I'm just saying a big thank you to you all and hope that you feel good about what you've done.

The week after next, my mum and dad and 14 others are flying out to climb Kilimanjaro and we're hoping that they'll raise a lot from that.  One of the dreams I haven't yet ticked is to get a nice charity caravan (like a chalet type thing) for our families to stay in. This will be really good for larger families and for those who just want to be on their own and it means that we don't have to wait for a hotel room to come up to sort holidays for them. The good news is that I've been to look at caravans and I've found a couple I like and now we just have to get the rest of the money together so that we can order it and start planning things like decking for it.  So if you want to sponsor any of the group, please click HERE and don't forget to leave us a message. If everyone that has visited my blog sponsored them just a £1, we'd have £4,000,000 to spend! That would be a nice caravan lol.

On Saturday 4th, it was my dad's birthday and we surprised him with a Forest Holiday and booked a lodge that we could take Mabel to. It was so lovely and relaxing and we even had a hot tub on the decking and I lived in it as I can't really go swimming in public anymore, so that was nice. We were in it at midnight one night, just looking up at the stars and Mabel was sat on the step watching us! While we were there, we went to collect our new puppy. Lottie is a black Labrador and she is the cutest little thing. Her and Mabel are best friends already and they curl up together to sleep. Lottie is a little bit naughty and has eaten one of Mum's expensive walking shoes already so everything has moved up a level!

I went back to Alder Hey and we agreed that I'd try another new drug. This one has been making me feel quite sick so it's not as good as the last one and I'm not sure that it's doing anything to my lumps either, so I'm not sure if Dr P has got any other magic to use on me, but I hope so.

On Thursday 6th, Milly and me received our B.E.M.s from the Lord Lieutenant (had to use spell check for that one) of Cumbria and all of our family and friends came to our Investiture. We went to the Beech Hill Hotel overlooking Windermere and it was perfect, the cakes were yummy and they even treated us to a break there too. Norman Bishop Rowe had nominated us and it was really nice that he was there too. We felt very special with our medals hanging on our dresses. We met some lovely people who were on holiday from Vancouver (how funny is that) - I know some of them follow my blog so hello to all of you! You can see a little video about it HERE. Thank you to everyone at the Beech Hill for making our day perfect, especially Fraser, Jonathan and Cora x and thank you to Sir James Cropper for presenting us with our medals.

Last week, Ol Parker, who is a film writer / director invited us to go to the first screening of 'Now is Good' with Dakota Fanning. I was lucky enough to visit the film set last year and meet the cast and the crew and watch some of the filming. I can remember asking when 'Now is Good' would be shown and he said it would be over a year away. So it was amazing to be there last week, cos I never ever imagined that I'd still be around and you must go and see the film.

I've been busy planning my other web thing which is a site or extra pages on my charity site (I don't know yet) which will have links to all the bone marrow registers around the world and space to promote a few registration events for people who are looking for a match.  At the moment, there isn't one place where you can go to link to everything and it's so confusing that I think lots of people just don't bother. Donating bone marrow is so easy and I've even done it. It was just a bit like giving blood, they don't have to cut you up or drill into you or do anything horrid and you could save someones life. I can't think of anything better than knowing you saved someone from losing their little girl or their parent or their best friend. Links are on here and on my Facebook pages