Organ donation in the news, trips out, an AYME meet-up and politics

Whoops for leaving it so long since my last update again. Looking at my notes from this week I think this update shouldn't be too long, but I never know until I've finished writing it, so fingers crossed.

At the end of last week I developed a rash on my hands and face after going in the sun, despite having factor 50 suncream on. At first I assumed it was a reaction to the sun, but after using a different suncream it seems more likely that it was a reaction to the suncream I used.

I forgot to weigh myself last Tue morn, so did it on Wed instead. My weight was 53.3kg, which was 0.3kg more than the previous week but exactly the same as the week before. It was the week I have to email my dieticians so I let them both know. My Hosp B dietician replied promptly and said she was impressed with how stable my weight was so would be happy for me to weigh myself monthly now. My dietician from Hosp A took a bit longer to reply as she was away for Easter, but she was happy with that too, so I don't need to email them my weight again until May. I'm a bit concerned about how much weight I could potentially lose in a month if I was to start losing weight, so I'm going to weigh myself fortnightly at home for the time being.

Last Wed I took some blood at home from a fingerprick and posted it off to Hosp B for them to check my Tac levels from. I also phoned them to let them know that the blood sample was on its way. I've not heard the result yet, so will chase them up about it later this week.

On Tue I got a phone call from the company who currently deliver my Tac asking how much I had in stock so they could decide if I needed another delivery or not. I was out at the time so they said they'd phone back the next day. They rang back on Wed while I was still in bed, so mum took the phone call. They'll deliver some more Tac a week on Wed.

Rachy is still continuing to make steady progress, so don't forget to keep following her updates here. Rachy had an article in her local paper last week which you can see here.

You may have seen that there was a story about organ donation all over the news yesterday. You can see the story on the Telegraph website here. It's a shame that the media seem to have completely blown the story out of proportion, I really hope it doesn't put people off registering to be an organ donor. You can read LLTGL's blog response here and Sarah has also written about it in her latest blog update here.

Once again I seem to have been quite busy since my last update. On Wed I went into Barnardo's for an hour. For the whole time I was there I was hanging clothes up, which got quite boring. It was very busy and noisy because there were lots of volunteers in. I was the only one doing any work though, the rest of them were just chatting. At least I didn't knock over any boxes of size cubes this time! When I'd finished I wandered round the charity shops in town. From Barnardo's I bought a copy of the DVD Nicholas' Gift which I'd rented and watched just a couple of weeks ago. I was pleasantly surprised to find that I get a staff discount of 20%. In another charity shop I picked up Jungle Book on DVD. I saw a PS1 game in a charity shop that I bought on eBay recently for significantly more money, but never mind.

On Thur it was lovely and sunny so me and mum decided not to go to the cinema but instead to wander round a local town that I'd not been to for a while. While we were out we stopped for drinks and found 7 charity shops :) In the charity shops I bought a book called Ten Thousand Sorrows by Elizabeth Kim for 75p, The Weakest Link PS1 game for £1 and 2 DVDs (Maybe Baby and Silkwood) for just 19p each as they'd originally come free with newspapers. In one of the charity shops I saw a woman who was there with her daughter. This lady was quite demanding with the shop assistants and rude to her daughter. When her daughter was talking to her she responded with 'Am I bothered?' just like the Catherine Tate character, but she wasn't doing it as a joke, that was her genuine response! :P While we were out we also bumped into a lovely nurse from Hosp H that we used to know well, so it was nice to have a quick chat to her.

On Fri morn before I got up, mum and dad went out to a fishing shop in a local city to look for a fishing bag to carry mum's giant knitting needles. They found the perfect one. Alf had planned to go to the cinema with his friends that evening, but they decided to go in the afternoon instead. They couldn't contact Alf because his mobile phone battery was flat, so they just turned up at our house at 12.30pm. Of course at this point Alf was still in bed, so there was chaos as he tried to get himself up and ready to go, especially as I was in the shower at this point! He got out eventually though and enjoyed seeing the film Kick Ass with his college friends.

On Fri aft Claire came round. We did lots of chatting, played a great card game called Ligretto, watched the DVD Coraline together and played on New Super Mario Bros Wii. As well as playing on New Super Mario Bros Wii with Claire, I've also played on it a bit on my own this week and am getting closer to completing it :) Claire is coming round again tomorrow and we're going to see if we can finish it, fingers crossed! I've bought myself a new Wii game this week from Amazon called Boom Blox Bash Party, so hopefully that'll be delivered later this week. I've not played on my PS2 for a little while, but am looking forward to playing on it again :)

On Fri night Alf went round to a friend's house in the village and none of us knew what time he'd be home. Usually we lock up and hide a key somewhere where he can find it to let himself in, but on Fri night the spare key seemed to have disappeared, so my parents decided to leave the door unlocked. At about 1am I was ready for bed, my parents were already asleep but Alf wasn't back yet. I didn't feel comfortable for the front door to be unlocked when we were all in bed, so I crept downstairs, found my spare key and put that out for Alf. I'd just locked the door and crept back upstairs and Alf came in!

On Sat I went to Lucy's AYME meet-up. To get there my parents drove me to a train station about 30mins away. I then got the train to Lucy's town, which took 40mins, where I met up with 2 other people and we shared a taxi to Lucy's house. There were 14 people (more than I expected) at the meet-up, so I became very shy and didn't talk much. I was very annoyed and upset at myself afterwards for that. No-one swapped seats either, so I didn't get chance to talk to some of the people I wanted to and one girl I was looking forward to seeing wasn't able to make it. I was quite tired while I was there, but I wasn't too bad. I'd not given my cat allergy a thought, but my eyes soon started watering thanks to Lucy's 4 cats! One part of the conversation that I found really funny was when some people started talking about blood tests. They'd clearly only ever had a couple of bloods tests because they were talking about cannulas blocking and needles missing veins like really unusual, traumatic events! I've experienced too many of them to count! I was quite tired when I got home, but felt ok the next day.

Yesterday morn some spare Glasto tickets went on sale. Dad had managed to get his and Alf's when they originally went on sale, but he'd not managed to get mum one. Luckily he got her one yesterday morning though. So at the end of June my parents and Alf will be going away to Glasto, which means I'll be at home alone for 6 days! That's exciting but a bit scary! If my health was better I might think about going to Glasto, but I'm not well enough to this year and to be honest I'm not too fussed about missing it - the yukky toilets, lack of showers and mud don't really appeal to me. So while the rest of my family are there in the mud I'll be watching the BBC coverage of it at home all cosy on the sofa :)

Yesterday morn we went to the local carboot sale again. It was much better than it's been for a while and I came home with loads. I bought a 500 piece dolphins jigsaw for 50p, a PS2 game (21 Card Games) for £1, a PS1 game (Harry Potter and the Chamber of Secrets) for 50p and 14 DVDs, all for £1 each! :D I bought 3 DVDs I've already seen - The Breakfast Club, Music and Lyrics and Rachel Getting Married. I bought 11 DVDs I've not seen before - The Pelican Brief, Brokeback Mountain, Clueless, Signs, The Blair Witch Project, Shakespeare in Love, iRobot, Becoming Jane, The Heartbreak Kid, P.S. I Love You and The Notebook. Mum bought the version of Pride and Prejudice featuring Colin Firth on DVD, some bits and pieces for herself and a book for me about films called Cinematherapy - The Girl's Guide to Movies for Every Mood, which was published in 1999, but still looks like I'll be able to get some DVD suggestions from it.

Yesterday afternoon we went to see my Nan but only stayed for about an hour and a half because dad wanted to get back to watch the football. Yesterday evening mum was listening to her iPod and was singing and dancing to Mika around the house and in the garden, but of course she was the only one who could hear the music! :P

Today my mum has gone to the library in the city to talk to an audience there about her knitting group to inspire them to set up their own. Mum wanted to take loads with her to show the people who come to her talk - her giant needles, lots of different types of yarn, lots of her knitted projects, a cushion she's just knitted etc - she'll be disappointed if only a few people turned up! She didn't have to carry her stuff too far as dad dropped her off as close to the library as he could, just outside the shopping centre that it's situated in, so she only had to walk through the shopping centre and up an escalator. To prevent her having to carry too many bags she put lots of stuff into a backpack. And she's got her giant needles in a fishing rod case. But she looks like a terrorist! Her backpack is one of the camouflage coloured Glasto ones and it's really big in comparison to my mum and the knitting needles in their case look rifle shaped! :P We were worried she might get arrested, but I've spoken to her on the phone and the shopping centre was very empty when she walked through it just before 9am this morning, so there was nobody there to get suspicious.

Last week dad heard that a local bike shop might have a vacancy so after much nagging Alf wrote them a letter to express his interest. Today my dad noticed that Alf had mistyped our phone number in the letter, so Alf phoned them to correct it. I've only been out to the surgery and local shop today. I've been relaxing this afternoon and don't have any plans for this evening. While I was writing this I had to go downstairs to ask Alf to turn his music down as even with my door closed I could hear it and it's horrible! So now he's very grumpy :P

On Wed there was an interesting piece on the local news about what the different political parties want to do about disability benefits. There was a disabled lady asking representatives from the different parties questions about how things will change for her if they get into power. This will be the first election I've been able to vote in, but rather than just copying my parents I wanted to know a bit about what the different parties believe and how their plans differ. However I struggled to find anything on the Internet that told me this in a way I could understand. A couple of days ago someone told me about a guide on the Telegraph website which helps you to find out how the different parties policies match your views. I didn't understand all of the questions in the guide, but I answered as many as I could. It said my views matched the Green Party 75% and matched Lib Dems 69%. My views least matched the Tories, but I didn't bother to include the BNP in my comparison. My parents vote Lib Dem and after looking at their policies in the guide I think I probably will too. The Telegraph guide is definitely worth having a look at, you can find it here.

I've not watched much on TV since my last update. When a programme name is displayed as a link on my blog, that link will take you to the place to watch it online if you're interested. I've watched Embarrassing Bodies: Charlotte's Story, the first episode of series 3 of Outnumbered (which was brilliant) and the second episode of series 3 of Ashes to Ashes twice :) I had to record Dr Who from Sat because I was out, but hope to watch it soon.

One of the DVDs I'm currently renting is the first series of the Catherine Tate Show, so I've watched the first 2 episodes of that. I've not decided what I think of it yet, but am going to persevere. Some of the sketches are funny, but some aren't.

As well as re-watching Coraline on DVD (which I love), I've also watched Sex and the City (which was better than I expected it to be), Little Women (the 1994 version with Winona Ryder, which was very good) and How to Lose a Guy in 10 Days (a predictable but funny romcom). I also attempted to watch The Pelican Brief, but wasn't able to follow it so I'll have to try it again when my brain is working a bit better.

On Tue night I listened to Taylor Swift through my pillow speaker, but it didn't help me sleep. On Wed I listened to some music from a CD called Temple in the Forest and I fell asleep while listening to that :) I discovered it when I was in hospital after my transplant and it helped me to relax then. A girl I know though AYME is very musical and she's recently released some of her music which is available to buy on iTunes or through Amazon. I'm not sure about her style myself but she is very talented so please have a listen for free on her MySpace page here. A few days ago I discovered that Marina and the Diamonds is performing at a festival that's just down the road from me this summer. I'm not well enough to go, but it's frustrating that she's coming so close yet I'm not going to be able to see her :( I couldn't see her on tour either because all the gigs were standing only. I think I might write to Marina and ask her to include some seated gigs in her next tour ;) Ellie Goulding's latest video has just been uploaded to Youtube today. The song is called Guns and Horses and will be released next month. You can see the video here.

I've also done some crosswords with my mum and some Sudoku.