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

46 comments:

  1. Glad you're a bit better. Thank you for letting us know how you're doing. We continue to send our love. Bless you and all you do! Joyce - Boise, Idaho, USA

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  2. From all of us here in the USA, Merry Christmas, & get better soon, plez,, PS The Leprechauns said Hi,,& 2 tell U if there is anthing they can do 2 help,,just ask, & they will make it happen.
    Via through me,,their laptop is in the shop,ha

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  3. Ahhh I was hoping to see a post from you this time of year!
    I hope you have an utterly wonderful Christmas! I'd comment something more beautiful and heart warming but right now I'll just wait in anticipation for your next entry!

    Much Love!
    Dan x

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  4. Oh, Alice! I do dread hearing that you're uncomfortable and not feeling well :( it's hard to tell, because even in your darkest moments, you still write with such a light heart and positive words! A true treasure - what will we ever do without you??

    Merry Christmas, love... I know it will be joyous that your family (and the world) has you again this year!

    xo - Jen

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  5. Happy Christmas Alice! My prayers are constantly with you.

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  6. Dear Alice, I wish that your Christmas you can fill the presence of God by your side anywhere, anytime, allways!!

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  7. Dear Alice, feel better soon please ,I so enjoyed seeing you on Tele at the awards ,very well deserved bless you ,Have a lovely Christmas ..I look forward to your pictures ..love Jan xx

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  8. Dear Alice

    I wish for you the very best Christmas - and that you may enjoy many more Christmases. May God be with you and bless you.

    Shimona

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  9. Dear Alice. A very Happy Christmas to you and the family and all the very best for the New Year from Jo & Keith (Hadar) x

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  10. Hi Alice

    Wish you were feeling better. I hate to think of you having to stay in the dark when it is the season of light but your spirit is never dark so that's what really matters. Thanks for taking the time to update us and you know we're all thinking of you. Merry Christmas and Happy New Year! XO from MEM in NB, Canada

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  11. Merry Christmas Alice, from our family to yours

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  12. I so enjoy reading your blog - you are such an inspiration to everyone around you! I hope you have a blessed Christmas, and a wonderful, full New Year! No telling what you will accomplish in 2013! Keep the hope!

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  13. You're inspirational Alice, we need more people with your positive and kind spirit in the world. You deserve to have a wonderful Christmas and I really hope you start to feel better soon. Looking forward to your next post, lots of love and wishes sent to you and your family xxx

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  14. Thank you for updating, dear Alice, and happy Christmas to you and your family. xxx

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  15. Dear Alice,I wish you all the best for Christmas and I hope you are feeling alot better soon!
    May you light our minds and hearts like you have this year and then into the next.
    Love Dave H xxx

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  16. Merry Christmas Alice! Get better. Keeping you in my prayers.

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  17. merry x mas alice so sorry your not feeling well hope you feel better soon. by the way happy birthday day glad you posted something was a bit worried now you take care young lady many blessing to you and your family

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  18. Merry Christmas Alice and Happy New Year.

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  19. Dear Alice, I'm so sorry you've had another rough couple of weeks, and were not well enough to enjoy the incredible milestone of your 17th Birthday properly. Drug trials are 2 edged swords, aren't they? It's great that you're on it, but it's such a humongous journey for you, and each drug brings another lot of nasty side effects. I'm so sorry to hear of your light sensitivity. I have had this for many years, (completely different, much less serious cause). I wear sunglasses every day of the year, ( even in bed, with curtains closed!) The very best ones ( and the ugliest), are from my local Sight Advice South Lakes centre in Kendal, sadly, closed until 2nd Jan. Maybe the Barrow Blind Society or RNIB have some? They wrap around the face, and also have a "shelf" above the eyes, which really stops that "needles stabbing your eyes" pain. I have just sent my pair to you, but they are an ex display pair and a bit loose. Maybe a bit of elastic attached to the arms will help? They are NOT glamorous, but might help on journeys and in bright hospitals. I really, really hope that you are able to enjoy at least some of Christmas Day. Wishing you happy, pain free days, now and in 2013. Take care of your extra special self, my dear. With love, Wendy Ely

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  20. Me again! I forgot to say- isn't there a computer wizard amongst your family or friends, who can adjust the brightness of your computer screen? That might help, but you've probably already done it! If so, sorry. xx

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  21. Happy Christmas, Alice! So distressing to hear that you are light sensitive. Just try and keep doing as you always seem to do - be positive and look toward your next adventure. You can't go wrong with that. Hugs, love encouragement and light sent from Texas, USA! Julie

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  22. Happy Christmas from Nova Scotia, Alice... I wish you and your family as much joy as your hearts can hold, and peace in everything.

    xo

    Bobbi

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  23. Have a wonderful holiday season and know that you have made a difference in the lives of so many people around the world! You are a wonderful and remarkable spirit!! Walk good!!

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  24. Merry Christmas from Michigan. I'm sorry to hear that your birthday was the pits. Is the light sensitivity from the experimental they have you on? I hope you feel better next week so you can enjoy the New Year celebrations with your family!

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  25. Happy Christmas, Alice. God bless. xxx

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  26. Merry Christmas, Alice. I'm glad you're still here, especially if you still are. It's really hard for you now and I hope it lets up. Hope you get to enjoy the NewYear's fireworks. Lots of love, Alice. Keep safe.

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  27. Hey Alice, sorry to hear your not feeling to great, hope the sensitivity subsides quickly and you get to enjoy of the happy holidays. I have been eagerly awaiting your post having become an avid follower of your blog, Im from BC in Canada and about three hours drive from your much loved visit to Whistler. You are so inspiring! Even in your aweful times you still always manage to write in such a way its as though you are not sick, you truly are amazing. Here's hoping that you and youre family have a wonderful Christmas and New Year. Keep smiling through! K

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  28. Have as good a Christmas as possible, Alice. I will be thinking of you and wihing that you feel better. Your blog is SO inspiring. With love. Cari xx

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  29. Merry Christmas Alice! I wish you feel good. You know, actually I don't really know you in the real world, like many of us, but the Internet has brought us together. Thanks for keep updating your blog while you're not feeling quite well. Every time I read your blog, you gave me something, maybe the courage for doing what we really wanna do, the power for chasing our dreams and for completing the bucket list but not just making it longer. I pray that you can live with lots of joy and love. I wish I could give a hug to you. Cheers, Patrick from Hong Kong

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  30. Wishing you a very Merry Christmas and that all your wishes come true! I send all my strength and light from Argentina: D

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  31. Alice, I hope you and your family are having a peaceful Christmas! I have been following your blog for some time now, and I find you very inspiring! Rest up and I hope your eyes feel less sensitive very soon! Much love, Samantha from Wollongong (Australia).

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  32. Hey Alice,
    Your blog is one of a kind.Inspiring and thoughts well put.Hope you have a great New years :)

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  33. Merry Christmas,
    Alice. I hope you feel better soon xxx

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  34. Hello Alice. I came across your blog by accident(I am still learning how to drive myself around the digital world, an old fogey me!) and I just wanted to say; you have my deepest and most profound appreciation and respect. You are an inspiration to me, and a regular reminder NOT to succumb to self pity and self debasement. Thank you, and may Love always be yours.

    Love Courage and Strength,

    Alan Mitchell
    (aka mrmephisto)

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  35. Hello!

    I just would like to give a huge thumbs up for the great info you have here on this post. I will be coming back to your blog for more soon.

    Man and Van Twickenham

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  36. Lots of love and merry Christmas to you Alice! Glad to hear you are feeling a bit better. "One Love" from Jamaica!

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  37. My comment disappeared Alice! Merry Christmas and "One Love" from Kingston, Jamaica! I am glad you are feeling a bit better. HUGS. Emma

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  38. I hope you all had a lovely and peaceful Christmas. Take care and rest those eyes :)
    Gillie x

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  39. Hey darling! Be strong, soon soon, this gonna be pass... Sorry, i don´t know speak english very well, but i´m here to wish a good and happy new year. God bless you, and put a lot of smiles in your life! Kisses flower :D Hapiness xxxx :D

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  40. Happy New Year, Alice. I will be thinking of you and wishing that you feel better soon. I pray for you and I wish you very much power for the new Year. With sunny Greetings from Kempen (Germany), Sonja

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  41. Happy new year, sweet Alice. Welcome in 2013.

    You've defeated the end of the world! So I'm sure you'll stay with us for a long time.

    I wish you to feel better and I will help you as much as I can.

    A lot of kiss from France

    Jean-Luc

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  42. Dear Alice, I just know that you are in heaven and I wanted to let you know that I have now made my bucket list, You are a brave amazing young lady, who will forever be remembered by me and will always be an inspiration. Keep on smiling down on us please and may your gentle influence forever linger.
    love to your family and friends
    Natasha - Nova Scotia, Canada

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  43. Just want to say that Alice was an absoloute inspiration - what a brave, selfless girl. And you as a family are admirable, i send so much respect and admiration to you all. I know that Alice has had the lovliest family with her through this time and you have all made her time special just as she made and continues to make yours and the millions of people that will be saved due to her charity for bone marrow donation awareness.
    So many people could learn a lesson from Alice, those who sit and complain about their lives, the ones who waste it. She has lived such happy and amazing things she's done and that is worth more than a life of misery.
    She is truelly a diamond and you the whole family are.
    I really admire you all and Alice.
    I know nothing can compensate for your loss, but she was a shooting star, a hope a lesson and a wonderfull person.
    I am moved by this blog all of your courage, it really is a testement to what sort of person Alice was and her family.

    So much respect.

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