17 November 2012

M plus a number

My mum will LOL at the title of this post cos she'll get what I mean straightaway! The 'm' stands for motorway cos that's all we do at the moment. I'm different to mum in that way - she's always been good at finding her way around (she hardly ever uses the Sat Nav) and she remembers what motorway goes where and which junction we leave at! She said it just happens once you become a driver! We spend life driving … Liverpool, Clatterbridge and now Surrey too.

Since I last posted, I think that we've spent about 3 days at home and poor mum has only spent 3 days at home since September cos she was camping on a mountain in Africa in her time off LOL.  My Nan and Grandad are doing a good job of looking after the house (nan) and the dogs (Grandad) and so at least it's clean when we get back. I've been back at Alder Hey where I had another line put in and into Clatterbridge for some more radiation (I've had so much radiation that I'm sure I glow in the dark) and also a few trips up and down to Surrey. So it's been really busy.

The Royal Marsden is over 300 miles away in Surrey and I've been down there for the last month but haven't actually started my trial yet. Typically, I managed to get both a chest and a line infection in the same few days and then got a nasty bug too! So the trial couldn't start and I basically just created lots of work for the lovely people at the Marsden. They are really, really nice down there and I've realised that we miss out a bit by living in the north. I love the mountains, the people and the relaxed way of living, but I've seen so many specialist people this last few weeks that I've realised we just don't get the same level of care in the north. I've been having daily physio (not sure if that's how to spell that) and have learnt how to breathe properly, plus funny stocking things and medicine to get rid of the extra fluid and a new cocktail of antibiotics for my chest, which for the first time in ages means I'm not coughing. I've tried a nebuliser to help clear the phlegm on my chest and because I'm not coughing as much, that stopped my muscles from aching! Plus they show me the scans and talk about what's what and I just find it all very interesting. So all in all, it's brilliant and I feel good. I've got to say that Alder Hey is fantastic too and I love the people there. I'm not putting it down, but they just don't have all the things that they have on offer in the south. But that is much worse when I come home to Ulverston where there isn't really anyone who is used to dealing with dying teenagers (16 is definitely the wrong age to be dying from cancer in this area). Last year, when I was really ill, there was no offer of anything other than more drugs. I get the feeling that it would be much easier for them if I just went. The people who come are nice people, but it's never the same person and they just aren't used to dealing with teenagers or people who are treated out of the area.  It will never change for me, but I hope that someone sorts out the way children and teenagers are looked after.
I was so pleased to see Robbie

In the middle of all of this, I went to the Pride of Britain awards night which was awesome. Emma Forbes had me a beautiful dress made in Liberty silk and her friend, Mark Cook, came and did hair and make up for us all (well, just make up for me LOL).  I was really sad that Emma couldn't come with us, especially as there were quite a few empty seats.  There were so many famous people there and I'd met quite a few of them before. We sat with Holly Willoughby and her mum - they were really nice and Holly really helped to calm my nerves before I had to go on stage.  JLS were supposed to be on our table too but apparently one of them had major toothache and so none of them turned up - I found it quite funny in a way, cos all I could think was how much medication I'd had to have to get there! When I got on stage, they asked me who was my favourite Take That member but I didn't want to say. I'll never forgot how nice they all were last year, when they agreed to meet me before their concert in Manchester - it was one of the best nights of my life ever. But I was very, very pleased when Robbie Williams came on stage - I'd been having nightmares that they'd have some celebrity announced but that I wouldn't recognise or something awful like that LOL. We had a chat backstage and it was lovely to meet Ayda too. She is really pretty in a natural way, not like loads of make up and artificial. I'm hopefully going to his concert next week in London, so I'm excited for that :) just figuring out if we can drive across London (and park) on a Friday afternoon. Wheelchairs are a pain when you are trying to get somewhere!

I've been busy making some Christmas cards for my charity and along with lots of other lovely bits they'll be for sale at our Christmas craft fair next week. We're going to be away and so I'm sad not to be going cos that would be one of my favourite things to go to. You'll also be able to buy Alice's Escapes t-shirts, hoodies and my famous Alice mug from Emma Bridgewater :)

That's it for this blog … today was my #christmasinnovember which was fab and so I'm going to do a separate Christmas blog tomorrow x



13 comments:

  1. I saw you on the Pride of Britain awards and thought I would burst for you. I have been reading your blog for a long while and adore your spirit and shine. You are just so wonderful. x.

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  2. Check out, http://www.patchadams.org/
    They give quality of life and heal at the same time,worth a look.
    Stay strong,,A little magic will soon B there,,hope U R home 2 get it,5 more days??

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  3. Good for you for highlighting the treatment differences in the North and South Alice. Hopefully things will change in the very near future so that other young people won't have to travel so far for treatments - it must be exhausting.

    I also saw you at the Pride of Britain awards and thought your smile lit up the room. Funny about JLS and the toothache - bunch of wimps :) Best wishes from bonny Scotland.

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  4. Alice you are truly inspiring and your Pride of Britain award is so very deserved. I'll keep my fingers crossed you get to Robbie's concert on Friday. I'm going on Thursday, can't wait ;-) hope #christmasinnovember was magical xx

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  5. Hi Alice, So glad to hear from you. You write about your various medical complications and and the like with such humour that I actually smile while I'm reading about your chest infection and nasty bug! It's too bad that you don't have the same advantages in your area as far as health care goes. It's very much like that in my part of the world as well. I would love to buy an Alice Escapes t-shirt or hoodie but I haven't been able to find them on line. You looked beautiful at the awards, stay strong. From MEM in NB Canada

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  6. I looking forward to reading your posts, you write with such grace and humor - I am in Cleveland, Ohio,far away from you - but I think of you every day, and pray for you too sweetheart....you are a strong, beautiful young woman - I am proud to 'know' you through your blog ! Stay strong !

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  7. It is interesting to hear a bit about your experience of hospitals etc as it is good for people to know about these things. I think that you must know now that everyone is able to learn so much from you, how you approach life, and this is helping others to make the most of their lives too. You're very clever! Xxx

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  8. Hi Alice, for some reason, whenever I try and post a comment, it disappears, never to be seen again, so third time lucky for this one! What an amazing amount you've achieved in the last few months, both in terms of all your gruelling hospital visits, and all your awards and fundraising. A massive "Congratulations" to you, and all your family. I'm sorry I missed your early Christmas, I have made something which I thought might cheer you along in hospital. Are you booked into one this week, and if so, which, and may I send it there? Otherwise, will a parcel addressed to "Alice Pyne, Ulverston,Cumbria", reach you? Good luck for the drug trial, and all that life throws at you- some of which I hope is nice! Very best wishes, Wendy Ely x

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  9. thank you for the Update, seems like you're quite the popular girl!! and you're mum is right in a way - you learn better where things are when you drive except I am grown and was birthed without a compass and sadly, not even the Tom-Tom can help me at times :)

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  10. Dear Alice, as always, your positive spirit, courage and determination shines through. I am thinking of you and hoping that the drug trial will go well.

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  11. Hi Alice, read a couple of your posts.. I'm sure you know by now you're such an inspiration to people and humbled by your positivity and strength.. you're truly awesome the way you are!! :)

    You live life with such zest and enthusiasm! Go get all the stuff on your list! :)

    Best, Ray
    http://twitter.com/raytanys
    http://adre.am

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  12. You are an inspiration I only wish I had your courage and conviction.

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