28 November 2012

#OneLifeLiveIt

PLEASE HELP ME! Mum and me have been driving around looking for an unlocked wifi signal cos my phone internet isn't strong enough to update my blog!

Today from 5pm until 7pm PLEASE PLEASE tweet the following with the hashtag #OneLifeLiveIt (be careful not to do One Live - Life it cos that doesn't make sense!

So, what you need to tweet is :

PLEASE help @Alice_Pyne save lives by tweeting #OneLifeLiveIt with a link to her bucket list & blog www.alicepyne.blogspot.com 

I'm trying to get everyone to tweet it to raise awareness of my blog and my number one wish of getting everyone to join bone marrow registers AROUND THE WORLD.

I came up with the #OneLifeLiveIt quite a bit ago, cos of my best friend at hospital, Oliver Parr. Olli lost his fight last year but we used to have so much fun and when I was thinking of a motto for living life to the full, I thought of all the giggles we used to have together.

So if this trends today, it's for Olli and I hope that we get loads more people onto the bone marrow registers and save others from dying.
O.L.L.I.
Alice x

19 November 2012

# (hash tag) christmasinnovember

A couple of people have pointed out that #christmasinnovember doesn't make sense. I know it doesn't seem to, but it does if you are a Twitter user. And if you're not, I'm sorry that you don't get it, but it does make sense, honestly :)
At the Festive Lights shop
I started planning my #christmasinnovember about 2 weeks ago and one of the things I was looking for was a nice artificial tree and a company called 'Festive Lights' got in touch with me and arranged for me to go and visit them on the way home from hospital (although my week down south became three) so that they could give me a Christmas Tree. So this week, after about 5 hours on the road, we arrived at a kind of Christmas Grotto! We had been worried that we wouldn't be able to find it, but there was loads of Christmassy lights outside and it was pretty obvious that we were there! OMG it was magical and the staff were all so nice and we spent ages and ages looking at everything. I ended up with a massive tree and loads of purple decorations and pinky purple lights and it is magical and I love it! 

My magical pinky purple tree

I was pretty shattered after the drive home and slept for 2 days, but in the evenings, we managed to decorate the tree and it looks absolutely amazing - what do you think? On Friday, my Uncle Gary organised a race night for my charity and we all went along for a bit of fun. It was quite funny cos the local paper just turned up and we thought it was a bit weird. I do loads of charity things and they've never turned up unannounced like that, so we did photos and my Uncle told them about the night and then they started asking my mum about my #christmasinnovember. So then my mum became suspicious and we're now expecting Monday's paper to say "Alice celebrates final Christmas" or something ridiculous like that. If it does, we'll just be very careful about who we talk to in future!
My BFF Sammi gave me a heart charm
But #christmasinnovember actually started just as 'Christmas in November' 2 years ago. I'd been told that I wasn't going to get better and sent home by Alder Hey and told that there was nothing more to offer. Rather than be miserable, we were trying to plan things to make life a bit more exciting and my mum came up with doing a Christmas Day in November just in case I didn't get to the real one. So we did it again last year and it was just as good, if not better, than the real one. I think that it's good because it's Christmas without any of the pressure. We do all the kind of things that we normally do on the real Christmas Day ... open pressies in PJs, eat chocolate at whatever time, watch a family movie and make a roast turkey meal. We even have crackers and hats and all that stuff! 

#baubleoftheday 
I tweeted about baubles and over the last few days, lots of baubles have been arriving. It makes me laugh that you can put Alice Pyne, Ulverston and they get to me. I think it's just cos we have a very nice post office in Ulverston. Anyway, in the middle of my #christmasinnovember day, the doorbell went and it was four big parcels for me! They were from Hallmark and M&S and it was everything I could possibly want for Christmas, including cards for my mum and dad and wrapping and a Christmas Tree with lots of gold decorations. So that one is going in the hallway and like it or not, the whole house is going to be Christmassy LOL!

Goodies from Hallmark
I'm going back to London and might be there for a bit so I'm not sure when I'll be able to post again. I've been using my phone but our phone and internet bills are over £200 this month and so we're trying not to use them too much. We had a lot of hassle with '3' after they charged mum a fortune extra on her mobile dongle thing and then cut her off so she couldn't do her work. We tried messaging them and calling them and mum even drove to a 3 shop, but they weren't interested until I tweeted about it. Then, only after someone who knows someone there sent an email, they said they'd sort it out. But honestly, if they're only interested in you once you tweet and they start getting hassle, I can't be bothered. We never wanted anything for free, mum explained that she wanted to upgrade or buy credit for me, but the best they could offer was to sell her another contract! So, we're leaving '3' cos of their rubbish customer service. Having an internet connection stops me feeling cut off and I can chat on Facebook and Twitter. Well, Facebook have blocked the link to this blog as either spam or abusive LOL. But it's pointless trying to get through to a human at Facebook and at least we don't pay for that!

Okay, that's it. Wish me luck cos I think that this week is going to be my last attempt at getting on the trial. I'm desperately trying to get everything right and I've been keeping my blood sugars low and watching what I eat and all that. I'm actually looking forward to seeing everyone at hospital, they're all really nice people. Oh, and I'm going to see Robbie Williams on Friday. YIPPEE - if only I didn't have cancer, life would be quite good :)



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