Health and the cinema

Last weekend I decided against helping out at the transplant camp in the USA this year as I'm still struggling with tiredness and I think being responsible for 8 to 10 children could be tricky if I'm not feeling great myself. However I have been invited to attend next year, so I'm hoping to go then instead :)

On Saturday morning I received a letter in the post from my local ME unit offering me an appointment in August. It's still a while away, but I'm just really glad I've got a date at last. My main concern isn't getting a diagnosis, but getting some support and hopefully learning some coping strategies.

I've not been feeling too well since my last update - have been exhausted and have had a headache on and off since Saturday :( I've also had a slight temperature (nothing high enough to worry about though) and a bit of a sore throat. I didn't manage to attend my friend's 18th birthday party on Saturday night as I just didn't feel up to. I'm also really struggling with the heat and am not looking forward to temperatures rising even more this week.

I managed to get out of the house a bit yesterday though and browsed round 2 carboot sales where I got some bargains (bought 4 DVDs, 1 gamecube game, 1 book and a lamp to go next to my sofa), visited my nan and went to the cinema.

I arrived at my local cineworld with my friend Claire a bit early for the film, so I could try to speak to someone about the possibility of them displaying organ donation leaflets in their foyer to coincide with showing 'My Sister's Keeper', as they'd not replied to my letter. I asked to speak to the manager, but he was busy so I spoke to the supervisor instead and showed him the letter I'd sent. The supervisor said that someone else sorted out those kind of things, but wasn't in yesterday. However, I've got the name of the person I need to see and know that they're in today from 9am til 5pm, so will go to see them this afternoon. I got so frustrated when I was trying to speak to the supervisor because he insisted on speaking to Claire rather than me! Claire didn't speak to him though and I answered all his questions, but he still insisted on responding to Claire rather than me, grrr. I find it really annoying looking young - I always have and now my braces really don't help. I often find when at the dentist or with doctors who don't know me well that they'll speak to my parents rather than me. When I return to the cinema this afternoon I'll make sure my mum isn't with me and then whoever I speak to will have to speak to me ;)

The film I saw yesterday afternoon was 'My Sister's Keeper'. I think it did the book justice, but did find myself constantly comparing it to the book. Most of the changes they made from the novel made sense to me (such as not including some minor characters and sub plots to fit a long novel into a film length), but there were a couple of odd changes I couldn't understand the reasoning for (such as changing the age of the main character, Anna). But there were some good scenes added to the film that hadn't been in the book (such as one at the beach). I'm not sure about the ending, I didn't like it as much as the ending of the novel. However all the main actors were fantastic, especially the girls who played the 2 sisters. I liked the film more than I thought I would and if you've not read the book or not read it for a long time, you'd probably be very happy with the film. I don't really want to say any more, as I'm worried I might spoil it if you are planning to see it, but a warning - take some tissues with you, I found it more emotional to see it all on screen than read it in a book.

And I enjoyed spotting medical mistakes and inconsistencies in the film, hehe. I don't know why Kate was on oxygen, but I did notice that the tubing was never connected to an oxygen cylinder! Dialysis was mentioned a lot, but there was never any evidence of it. And although Kate had a central line which was seen, there was never anything connected to it or any cannulas or IVs.

I watched a really good film the other day called 'Prime', which I'd recorded from the TV. I'd highly recommend it as it first it looks like it's going to be very predictable, but there is soon a big twist and it's very funny too. And the ending surprised me. When I return to the cinema this afternoon, me and mum are going to see a film while we're there. I really wanted to see 'Sunshine Cleaning', but was disappointed to find that it's not coming to any of my local cinemas because it's an independent film :( So we're going to see 'The Hangover' instead.

My dad and Alf (my younger brother) are still away at Glastonbury, but they've been in touch and sound like they've been having a fantastic time. They're due back this evening.

Overdue update

Sorry for the delay in updating. I seem to have been very busy this week, but haven't really done much worth writing about! So I'll try to write an update, which may be surprisingly short or more likely it'll be ridiculously long as I remember various things as I go along!

On Tuesday morning I weighed myself like I do every week and was disappointed to find that I'd lost a bit of weight for the second week in a row :( So I've been in touch with my dietician who is also quite concerned and since Tuesday I've been having 2 high calorie drinks each day in the hope that they will help my weight. The flavours of the drinks are ok, but I struggle a bit with the textures as they are so thick.

My dad and Alf set off to Glastonbury at 3.30am on Wednesday morning! Me and mum haven't had many updates as they're finding it tricky to get a phone signal, but the updates we have had were very positive and they sounded happy! I've been enjoying watching some of the Glastonbury coverage on TV this evening, especially Lily Allen with her purple hair. Was quite shocked at her revealing outfit though! :0 I also liked V V Brown and Little Boots :)

With regards to the sorting out of my room, my desk chair arrived on Monday. I was very surprised to find that it was a flat pack, but managed to put it together on my own, which I was very proud of! However, it is quite uncomfortable to sit on :( I bought it to replace a desk chair that I've been borrowing from Alf's friend, so am going to ask him if he'd like the new one and if I can keep the old one, as I find it more comfortable :D

And I bought myself a new TV for my bedroom! I had an old 14 inch non-flatscreen TV, so decided to replace it with a 19 inch LCH flatscreen TV with built-in Freeview and a built-in DVD player :D It was delivered just 2 days after I ordered it (the delivery estimate was 3 to 5 days) and I managed to set it up myself, as Dad is at Glastonbury! It was quite expensive, but I'm very happy with it :D

I've been feeling quite tired this week, which has been disappointing after I had such a fantastic fortnight. But I've still been getting on with things and have helped mum tidy up the house a bit while the boys are away. I've also watched a few films this week - The Ring, The Corpse Bride and 2 Weeks Notice :) And I've discovered a great programme on the BBC called Psychoville, which I'd highly recommend as it's not like anything else on TV. And I've got Wii Fit back from a friend this week, so have been playing on that a bit. It's made it very clear that my balance is rubbish, so I'm going to see if I can improve that as well as my fitness in general.

My friend Catherine didn't make it round on Tuesday as she had been ill the previous night and suspected she had a stomach bug, so had to stay away, as I couldn't risk catching it. But I'm hoping to go to a friend's 18th party tomorrow if I feel up to it, so will see Catherine there.

I heard on the local news this week that my old school (where I went to sixth form) is currently closed due to 2 cases of swine flu!

'My Sister's Keeper' is a fantastic book by Jodi Picoult which deals with some issues surrounding organ and blood donation. It has recently been made into a film which was released in cinemas today. A charity I support called Live Life Then Give Life are asking people to contact their local cinemas to ask them to display organ donation leaflets in their foyers to coincide with the showing of the film as this could be an effective way to raise awareness of organ donation. I've contacted my 3 local cinemas, but haven't heard back from them. I'm going to see the film on Sunday though, so will try to speak to someone at the cinema about it then. If you think you could contact your local cinemas you can find out more here.

Happy

I'm feeling very happy at the moment and these are the reasons why:

• I have finished decluttering and tidying my room
  
• My lovely sofa has just been delivered
• I have bought a desk chair which will be delivered on Monday
• I am feeling well and have been for nearly a fortnight now
• This morning I purchased tickets to see Taylor Swift perform at Wembley Arena in November
• I've not seen my best friend from school since we finished 4 weeks ago, but she is coming round on Tuesday
• I will see all my other school friends at a friend's birthday party next Saturday
• I have just discovered that Hospital B's Team for this year's British Transplant Games has received a grant towards the costs, so I will be refunded the money for the accomodation (which was very expensive)
• I've just seen my older brother Chris and his girlfriend who I'd not seen for a few weeks
• I've just learnt how to get photos from my phone onto my laptop, which is how I've been able to provide the photo of my sofa above :)
• My dad and younger brother Alfie are very happy as they're off to Glastonbury next week
• Me and my mum will have some nice times together while they're away
  

More bedroom sorting and a sofa hunt

Since my last update I've been continuing with sorting out my bedroom and after doing a bit everyday for over 2 weeks the end is now in sight! I just need to declutter and tidy under my bed and then it's done :) Yesterday evening my dad helped me to rearrange my furniture - my wardrobe has been moved and my new storage units for DVDs and CDs have been screwed to the wall. I've also emptied a cupboard, but that has had to stay in my room for the time being until we work out what we're going to do with it.

Through decluttering my room and being able to get rid of my cupboard, it now looks a lot more spacious. I've known for a while that I want to fill the space up with a small-ish 2 seater sofa so I don't have to sit on my bed to watch TV, read, play on my Wii etc. And also so I can have friends up in my room and there'll be somewhere for them to sit. Earlier in the week I looked on the Internet at some sofas, but I want to try them out for comfort before I buy them, so today me and mum went into town on a sofa hunt. Before we went I found a local sofa warehouse on the Internet, which sells catalogue returns furniture at really good prices, so we went along to have a look. They had loads of sofas, but the majority were leather, which I don't find comfortable. There were a few fabric sofas though, but one was green which would have clashed in my lilac and blue bedroom! Then I found the perfect sofa :D It was a 2 seater, light beige coloured (so would fit in my room), exactly the right size and very comfortable. And it was very reasonably priced at just £200. So I bought it :) It will be delivered on Saturday. I took a photo on my phone, but can't get it onto my laptop at the moment. If I work out how to later then I'll post it up.

Tomorrow Sarah was going to come to do my Gifts of Life photoshoot, but we are going to reschedule for another date as her son Wills (who has had a small bowel transplant like me) has his first ever school assembly tomorrow. But I'm happy with that as my room is not finished yet, but now by the time Sarah comes it should be finished so I can have photos taken in there :)

My energy levels are continuing to be good :) As well as doing lots of tidying of my room since my last blog I've also been sofa hunting, been shopping in town, visited my nan... However my appetite has been decreasing and I'm struggling to eat full meals at the moment because I often feel full even a long time after I last ate. So I have to keep an eye on that, and on my weight too, to see how it goes.

A social hospital event, carboot sale, tiding my room and seeing friends

Saturday was Hospital B's annual small bowel family day, which is a chance for the families of children who've had small bowel transplants to meet up. It was great to catch up with some special friends and to meet new families as well. I think the highlight for me was seeing children who I've only seen before when they've been ill in hospital, full of energy and really well :) The whole day was quite hectic though, so I didn't have as much time to chat to people as I would have liked.

On Sunday me and my parents took my nan to look round a local carboot sale. My nan has mobility problems, so to gain back some independence she's currenly learning to drive a mobility scooter, which is quite a learning curve as she's 85 and has never driven a car! I was quite concerned for the other people at the carboot on Sunday, but luckily my nan didn't run anybody over. There were a few hairy moments though, such as when she turned from a quiet, wide path into a busy, narrower path and dad suggested she slowed down. So she stopped the scooter, turned the speed dial the wrong way and then shot off into the distance, lol! But she really enjoyed it as she doesn't get out of the house much at the moment. I also picked up a few bargains at the carboot sale - the entire 1st series of The Vicar of Dibley on DVD for just £4 and two very useful storage units for DVDs and CDs for £8.

Sunday afternoon I spent sorting out my room. I had a really productive afternoon and got loads of decluttering and tidying done. One of the sorting jobs I did was to go through a box of all the letters and cards I received from friends and family during the 3 months I was in hospital post transplant. I did this with my mum and we threw most of the correspondence out :) I also tried shuffling my furniture around a bit to see if I'd be able to make room for a small sofa in my room, and it looks like one should fit, but I still need to try to find a cheap, comfortable one. I plan to finish tidying my room by next weekend, so my dad can help me rearrange my furniture (move my wardrobe and screw the new storage units to the wall) before he goes to Glastonbury.

Yesterday me and mum went to visit my best friend Lizzy and her daughter M. We weren't sure if we'd be able to get there as there were long tailbacks on a main road, but we managed to avoid them with a detour. It was great to catch up with Lizzy as we'd not seen each other since last September when we celebrated my 18th birthday together. And M had grown up so much since we last saw her last August. She turned 3 last month! She was speaking in full sentences, understood loads and was very tall. She's completely adorable and great fun :) She told me she liked my teeth (I don't think she'd ever seen braces before!) and cried when she realised I was going to have to go as she wanted to play with me more, awww. We've arranged for me to stay there one night in August so I can spend more time with them and maybe babysit for M so her parents can go out. Our journey home was quite eventful, as we drove right through a huge lightning storm!

Oddy I tend to feel at my best (have lots of energy and don't feel tired) quite late at night (from 10 or 11pm onwards) which is very frustrating as I'm so tired for most of the time and it makes it difficult to get to sleep. But usually I try to get to sleep around midnight despite this. However last night I decided to make the most of the time I felt well, so was very productive from about 11pm til 12.30am. I did make myself go to sleep around 1am though, so I could get up this morning. This morning I've been finishing the jobs I started last night - I've written to an old friend who I've not been in touch with for ages and I've also sent her some photos. I've also written to 3 local cinemas to ask them to display organ donation leaflets in their foyers to coincide with the release of My Sister's Keeper later in the month. And I've ordered some more organ donation leaflets from UK Transplant so I can post them out to any of the cinemas who agree to help out.

Tuesday mornings are the morning I weigh myself. This morning I was disappointed to find that I've lost the half a kilo I put on in the previous week. It's very frustrating.

This afternoon I plan to do some more sorting out of my room - maybe tackle under my bed or maybe the shelves of stationery and old school books above my desk. Very soon I hope to post up some of the Japan photos I've long been promising. There are over 700 so I just need to select the best ones.

A productive week

After such an awful weekend I've been surprised to find I've had quite a lot of energy this week and felt much better than I have for a while. I've still felt tired and struggled with stomach ache and a headache one morning, but overall I've felt quite good :)

I've taken advantage of the extra energy I've had this week to be productive and have done lots of decluttering, cleaning and tidying of my bedroom. I'm starting to see the results now, so I'm very pleased with that, although I still seem to have quite a lot to do. I've produced lots of stuff that we hope to try to sell at one (or maybe two) carboot sales this summer.

On Tuesday morning I weighed myself and was very pleased to discover that I'd put on half a kilo :D I've got some high calorie drinks to have, but they really fill me up, so if I have one with my breakfast I then find that I don't have enough of an appetite to finish my lunch. I'm going to talk to my dietician and ask her advice.

I'm really looking forward to tomorrow because me and my parents are going to be attending the annual small bowel family fun day at Hospital B. Small bowel transplants are still relatively rare, so the hospital organises this annual event to get all the small bowel transplant recipients and their families together. There will be some talks in the morning and then lunch and a party in the afternoon. It'll be lovely to catch up with everyone again and meet some new families too :) It'll be quite an early start though as we'll have to leave here at 8.30am to get to Hospital B for the 10am start. Will report about it later this weekend or early next week.

Then on Sunday I'm hoping to see my nan and on Monday me and my mum are going to visit my best friend Lizzy and her adorable 3 year old daughter. We've not seen Lizzy since September when we celebrated my 18th birthday together and we've not seen her daughter since last summer, so I'm really excited about it :D

Mika Concert

Yesterday me and mum were both very excited about seeing Mika again, as we're both huge fans. We saw him last February on the last night of his 19 month Life In Cartoon Motion tour. He's currently doing a small (7 date) acoustic tour of Europe to promote his new 4 track Songs For Sorrow EP. And we were lucky enough to get hold of tickets for the only UK date of this tour :D

We set off to London mid-afternoon yesterday - me with purple nails and wearing my Life In Cartoon Motion t-shirt, both of us wearing Mika button badges and mum with her hair freshly purpled (she likes to stand out from the crowd and doesn't like to be normal, so has a purple fringe, lol). On the train journey we both listened to Life In Cartoon Motion and Songs For Sorrow on my iPod, which got us very excited :) We got into London and to the venue in plenty of time, so we wandered around the area. We popped in a charity shop to see if there were any bargains and me and mum both came away with a great value DVD :) Then we ate out in a Yo Sushi restaurant just round the corner from the theatre. I really like Japanese food, but have to avoid raw fish, so we found some nice non-sushi options. I ate teriyaki chicken with noodles and some chicken dumplings, yum yum. And of course I had green tea to drink. As I mentioned earlier, my mum likes to be different, so she took 2 chopsticks from the restaurant and stuck them in her hair. Added to that she had a purple fringe and a necklace made of giant dolly mixtures, so she gots some odd looks, hehe.

After we finished the meal we still had plenty of time, but wandered back to the theatre for doors opening at 6pm. The concert wasn't due to start til 7.30pm, but we thought we might as well be at the theatre than anywhere else. While we were waiting I bought some merchandise (a tour t-shirt, some more button badges and the Songs For Sorrow EP) and we found some other fans to chat to. It got to about 7.15pm and the doors still hadn't opened, so we started to form a queue outside the doors, but we all had numbered seats so it didn't really matter. Eventually we were let in just before 8pm. Me and mum were in the middle of the third row in the lower circle, but because it was quite a small venue we weren't that far from the stage and had a great view :) I've found this photo on the Internet of the audience which shows the size of the venue and intimacy of it quite well. Before Mika came on though we had a support act who were on from about 8.15 til 8.40pm. I wasn't very impressed with the support act. They were 2 girls who played lots of different instruments and sang, but all their songs (I think they did 4 or 5) sounded the same and the girl who was singing shouted and screeched a bit! And I didn't catch their name. After the support act left the stage there was a gap til Mika finally came on at about 9.15pm.

The set was very shiny and sparkly and I thought it was quite Christmassy! Mika joked about how much chewing gum he'd had to eat to provide enough wrappers to make the set. The concert was acoustic, so Mika was accompanied by a strings orchestra, a drummer, 2 guitarists and 2 singers. Mika spoke to the audience quite a lot which was great, but he also swore quite a lot, especially as there were a few technical problems! He also mentioned something that I didn't quite catch about September the 11th, so I think that might be the release date for his next album as I know it's due to be released in September.

Mika sang all 4 Songs For Sorrow (if you've not got the record you can hear 3 of the tracks here. They were great performed acoustically, I especially like Blue Eyes. He also performed the majority of the songs from Life In Cartoon Motion (all but Any Other World and Ring Ring), but they were all a little bit different performed acoustically. He started the concert with Grace Kelly which I thought was good because everyone knew it. A little later after he'd done his 4 Songs For Sorrow he sang Billy Brown which was fantastic because everyone sang along. He'd sing a bit then hold the micrphone towards the audience and we'd sing the next line. Big Girl (You Are Beautiful) and Love Today were great because they got everyone up and dancing. And just before Big Girl (You Are Beautiful) there was a huge confetti storm. Lollipop was fantastic as gigantic balloons were thrown out into the audience and that really got everyone going. Mika really knows how to engage an audience! :D He started Any Other World, but began in the wrong key and then his earpiece fell out, so he suddenly changed his mind and sang My Interpretation instead. And he finished off with Relax (Take It Easy), which was really good acoustic. And Mika performed 3 brand new songs, which hopefully will be on his second album, due to be released in September. The 3 new tracks were called Rain, Good Gone Girl and Blame it on the Girls. I though Rain was a bit slow, but it might just be one of those tracks that takes a few listenings to. Good Gone Girl was quite good and had a catchy tune and I loved Blame it on the Girls, very catchy. I had a fantastic night and my mum loved it too :D :D

I did take my camera, but couldn't get any good photos because of the lighting. I saw loads of other people with cameras though (the constant flashes were quite annoying during the concert), so I'm hoping photos might appear on the Internet over the next few days. If they do I'll let you know.

It was about 10.30pm when we came out, so then we walked back to the station. We caught the 11.22pm train home, which got in about 12.20am. On the train on the way back me and mum were quite hyper from all the excitement of the night! I realised I'd not yet got a proper photo of my mum with the chopsticks in her hair, so I tried to take one of her on the train. I just couldn't get a good photo of her though and the many attempts just cracked us up. She either had her eyes closed or had a funny expression on every photo. We were so happy from a fantastic night :D Then the man in the seat behind my mum got up and very pointedly moved down the train carriage to a seat further away from us, whoops! After that we calmed down a bit and just chatted, read the paper and looked at the crossword until the train got in.

A rough weekend

On Friday afternoon I went to the surgery to pick up some high calorie drinks that they had in stock. I'm supposed to drink 2 a day, but have managed 1 a day over the weekend and am going to try 2 a day from tomorrow. I heard from Emma at Live Life Then Give Life that they were looking for photos of transplant recipients to put in a new organ donation awareness slideshow to show at NHS staff training sessions this summer. I emailed some photos of me very jaundiced before my transplant and some of me looking much better post transplant and Emma said she'll try to get at least one in the slideshow. After that I tried to do some more decluttering of my room, but just didn't have the energy. I relaxed that evening and watched a film with my parents.

On Saturday I felt rubbish. I was exhausted, had no energy and had stomach ache on and off all day. I also couldn't get warm and was constantly cold. I'd planned to go out to Strawberry Fair that afternoon, but stayed in instead as I didn't feel up to going out. I just relaxed for most of the afternoon - watched Toy Story, watched the music channels, surfed the Internet and listened to my iPod. While I was surfing the Internet I discovered The Wall of Life and so uploaded a photo to show my support of organ donation. My photo hasn't been put up yet, but when it has I'll let you know so you can try to find it. I also chatted to Holly about an exciting meeting she has with the Department for Children Schools and Families tomorrow to see what they can do to help her campaign. That evening I really wanted to do something a bit productive despite feeling so rubbish so cleared out the medical drawer, which was quite a mess. We just throw hospital letters etc into it and looking through it on Saturday it clearly hadn't been sorted out for a couple of years! So that was a job definitely worth doing. After that I watched a Take That Beautiful World concert on TV (while my friend Claire was watching their Circus concert live!) and played Uno with my dad before going to bed.

On Sunday I woke up late, at about 10.45 after around 11 hours of sleep, but still felt exhausted. I tried to potter around a bit but just had no energy, so went back to sleep from 12.30 til 2pm. That didn't really help though and even after getting up and having a shower I still felt exhausted. My nan came round yesterday afternoon, so it was nice to see her, but I just felt rubbish with exhaustion. My mum suggested phoning hospital B, but I didn't think they'd be able to help as I just need the ME referral speeding up, and didn't want to panic them by phoning on a Sunday. So I decided I'd see how I felt over the next day or two and possibly phone on Tuesday when I know I'll be able to speak to a nurse I know well. I went back to bed again yesterday afternoon for an hour, but couldn't sleep. I missed tea as I had no appetite, but did manage some rice pudding (yum yum) and a Fortisip drink later in the evening. Yesterday I received an email from Jenny, my donor's sister, in response to the update I'd sent her earlier in the week. In my email I'd told Jenny about Holly's campaign and so in her response Jenny asked if she could help. So I spoke to Holly who said Jenny would definitely be able to write something to help her campaign, so I then passed Holly's email address onto Jenny :) And last night I also received an email from a school friend inviting me to her 18th birthday party later this month, so I'm looking forward to that. Then I watched The Apprentice final and was very happy with the result :) I can't believe it's over for another year now though.

Last night I was woken at 5am by birds squarking at each other over the food on our birdtable, despite my window being shut! Luckily it didn't take me long to get back to sleep though. I was concerned about how I'd feel today seeing as me and mum have tickets to see Mika in concert tonight, but I woke up at 10am this morning feeling much better :D Have been relaxing so far today and have been getting ready for going out (washed my hair, painted my nails etc.) The plan is to head into London mid-afternoon and eat out at a Japanese restaurant this evening before the concert at 7.30pm. I'm very excited :D :D :D

Codie's Anniversary

Today is 2 years since Codie died. I made a post in her memory here, so today I'm just going to post up my favourite photo of Codie.


RIP Codie. Xxx

Decluttering my bedroom, voting and the orthodontist

On Tuesday I made some more progress with my big bedroom clear out when I sorted out my wardrobe. I put around 50% of the contents out in a charity sack :) When I used to have a stoma following my transplant I wore very baggy clothes to hide it. After I had my reversal last summer I bought lots of more fitted shirts and t-shirts, but didn't throw the baggy ones out, just in case. So on Tuesday it was fantastic to be able to get rid of them all :D That evening one of my friends who I'd not seen for a long time came round for a catch-up, which was lovely.

On Wednesday morning I was quite productive. I completed the long (15 page) M.E. questionnaire and sent it off, confirmed the date for my teeth extractions (27th Aug) and sorted out the antibiotic cover I'll need for the extractions (the volume of antibiotic is quite large, so I'll need to take 6 tablets that morning just 1 hour before the procedure). I relaxed for most of the afternoon as I was very tired, so played on my Wii, read a bit... I really enjoy playing on my Wii and DSi so had a look on the Internet to see what Nintendo had announced at the E3 conference. Apparently a sequel to Super Mario Galaxy should be out on the Wii next year and later this year there will be a New Super Mario Bros game released for the Wii. And there are some good DS games to look out for too.

I read through the latest magazine from PINNT (a support group for people on artificial feeding) and was surprised to find an article from some nurses I used to know at Hospital G (my old hospital before my transplant) who had been to the USA (to meet the doctor I met at the intestinal study day earlier this year and who has also invited me to help at the summer camp) to find out more about small bowel transplants because they're hoping to start doing them! So that's quite exciting :)

I felt a bit better after tea on Wednesday and had a bit more energy, so decided to tackle a big project in my bedroom. About a week earlier I'd sorted through my many novels and decided to get rid of all the ones ones I didn't want read or wouldn't read again, so that the remaining ones would fit better on my shelves. On Wednesday I decided to sort through my non-fiction books of which I had loads (craft books, books about animals, biographies...). Before I started I had too many for my shelves, so some were piled on my desk and some were on top of my wardrobe! I pulled all the books off my shelves and onto my bedroom floor and sorted through them all deciding which to keep and which to get rid of. Then I organised the ones I wanted to keep and put them back onto my shelves. It took about 2 and a half hours, but I was really pleased with the result - they all fitted on my shelves with room to spare! :D My mum works at our village library, so all the books I don't want any more will either be donated to the library or sold there :) I was very tired after that so enjoyed watching a special programme about The Apprentice, followed by the penultimate episode of the series and then You're Fired. I was very disappointed at the firings though, as I wanted Debra to win the whole thing. I'm still looking forward to the final on Sunday though, but don't really mind who wins (preferrably Yasmina though, as I don't like Kate).

Thursday was quite exciting as it was my first experience of elections :D From 10 til 11am me and my mum helped out with telling in a neighbouring village. We support the Liberal Democrats, so for an hour we recorded the voting numbers of the people who voted, so later that day the local Liberal Democrats could see who hadn't voted, work out from prior talking to people who might vote for them, and then remind them to vote. After that we came back to the village and I voted for the first time. When we got home I didn't feel too tired, so did some productive things for a while. My friend Sarah who is currently doing the Gifts of Life photography project has been asking transplant recipients to try to sum up their transplant story in just 6 words (which is more difficult than it sounds). So that afternoon I thought of a few and emailed them to Sarah. My favourite ideas were '2 steps forward, 1 step back', 'So many memories, happy and sad' and 'Received the greatest gift, a future'. After that I emailed my donor's sister a long overdue update on my progress and also sent her some photos of me.

After that I went very tired again, so relaxed - played on my Wii, watched the music channels and watched a film. Later when I felt a bit better I did a bit more sorting of my bedroom - I found some books I'd missed the day before, so sorted them as well as a few cluttered surfaces and drawers. I then played on my DSi, read and watched some TV before bed. Room 101 was funny with Sir Alan Sugar :)

This morning I had an early-ish start to go to the orthodontist. I had the wires on my braces tightened for the first time since I'd had them fitted. My teeth feel ok at the moment, but I expect they'll be sore later. While I was there I also found out a bit more about what to expect on the day I have my extractions (such as seeing my orthodontist first to have the brackets removed from the teeth I'll have extracted). I've just been to the surgery to pick up some tablets and I asked them if they'd received the prescription for my high calorie drinks from my dietician. They'd not got the prescription yet, so said I should ask again next week. But I've just received a phone call from my GP saying that he has got the fax and will order me in loads of them for the start of next week. But they do have some in stock, so I'm going to pick some up later today so I can start drinking them over the weekend. Later today I hope to do some more sorting of my room as it makes me feel really good when I get rid of some of my clutter :)

Tomorrow I'm hoping to go to Strawberry Fair, but it'll depend on the weather, as I don't want to be cold and miserable and I suppose it'll also depend how sore my mouth is. And then on Monday I'm going to see Mika in concert again with my mum, I'm so excited :D I have more exciting things planned after that, but I'll mention them nearer the time.

A few busy days, then a chance to relax

After I wrote my last blog update I went out to babysit for H. I look after her quite regularly, usually for an hour or two each time, so I expected similar on Wednesday. However, just as H's mum was leaving the house (at 7.30pm) she said "I'll be back around 11pm"! I don't mind sitting for H for longer spells as she's very well behaved and good at amusing herself, but I was a bit shocked as it was unexpected. And H's mum said she could stay up til she got back - H is only 10! But the evening went well, despite H being full of energy and me being very tired.

Thursday was a very busy day. I had an early-ish start for the orthodontist. While I was there I had a new bracket glued on to replace the one which had fallen off on Tuesday. I was a bit surprised though as I thought the bracket had fallen off a tooth at the bottom, but in fact it had fallen off a top tooth! And the man gluing the bracket on didn't give me much confidence in him, as after he'd set the glue he asked the nurse if she was sure it was a top bracket, because it looked like a bottom bracket to him!

At the orthodontist I also saw a surgical registrar about the 4 extractions I need. It wont be him that does them, but he reassured me that all the extractions should be straightforward, so I've opted to have all 4 done in one go with just local anaesthetic. He had my notes in front of him, but asked for my medical history, so he'd clearly not read them. I didn't know where to start! He said he could just look through my notes, but that would take him 5 minutes - I think it'd take a lot longer than that! Because I've had a liver transplant I'll need to have bloods taken a week or two before the extractions to check that my clotting is all normal. Initially a date at the end of August was suggested for the extractions as it was the earliest they could fit me in and it'd be convenient for me as it's after all my summer plans (British Transplant Games, America...). However, then while looking through my notes, the nurse discovered the date that my orthodontist had referred me to the surgical team. The hospital have a target to get patients seen within 18 weeks of their original referral and for me this 18 weeks will be up at the start of August. So they then tried to fit me in before the start of August, but they were very booked up and made it very clear I didn't want the extractions in the week before the British Transplant Games or the week before I go to America! So a date hasn't yet been fixed, but we'll receive a phone call from someone shortly who will try to fit me in before my 18 weeks is up, but I suspect it may not happen til the end of August. I'll let you know.

We were at the hospital for just over 2 hours, but once we'd finished there me and mum went to see some friends who live in that direction. Mum used to work with M and I've become very good friends with M's daughter, H. It seemed ages since we'd seen them, so it was great to catch up, even though I was very tired. When we finally got home after a busy day I enjoyed relaxing and watching The Apprentice that I'd recorded the night before while I was babysitting. I was happy at the result of that episode and am now really looking forward to the final 2 episodes. That evening I also watched Britain's Got Talent, which I watched all last week during the semi-finals. I enjoyed watching the final on Saturday night and was very happy that Diversity won as they were my favourite act :D

On Thursday I also received my new Filofax in the post, which I'm very happy with and have been finding very useful. And that evening I also got my fixed laptop back :D I didn't do much with it on Thursday, just surfed the Internet. I can't believe how fast it is now it's been repaired!

Friday was a more relaxed day, which was nice after a busy day on Thursday. I was also feeling very tired all day. In the morning I put all my files back onto my laptop and reinstalled iTunes. iTunes wasn't very happy though and although all my music and videos are fine, I seem to have lost 3 games which I'd previously bought from the iTunes store. And I took the opportunity to reorganise all my files and documents and get rid of old ones. I also set my mum up with a Facebook account on Friday! After lots of persuasion from me, Chris (my older brother) and a few of her friends, mum decided that she could use a Facebook account to share photos of her knitting! She's not learnt how to use it yet though. Chris came round for lunch, which was nice as although he only lives 8 miles away, we don't see him that often. In the afternoon I attempted to write an article for PINNT, a support group for people on artificial feeding who have been a big support to me in the past. I want to share my positive transplant story in their magazine to help others who might need a transplant. However I'm not yet completely happy with what I've written, so I wont send it off yet. And then Friday evening my friend Claire came round for tea, which was nice as she always cheers me up :)

On Saturday I was very tired again and had stomach ache on and off all day, so just relaxed for most of the day - watched TV, surfed the Internet, read, played on my Wii... I did manage to do something a bit more productive in the evening though :) I'm an active member on the Transplant Kids forums and have recently become a moderator for 2 sections of the forum. So on Saturday I made a start on improving one of the sections I'm now moderating (Kids Korner). All I managed to do on Saturday was to remove all the broken links, but I've got some ideas about what else I want to do with it over the next few weeks.

On Sunday I just did odd bits and pieces for most of the day as when I'm very tired I can't really concentrate on one thing for long. I was hoping my tiredness and concentration might have started to improve now my exams have finished, but I've seen no improvement yet :( And I had stomach ache again on Sunday, which didn't help my concentration. Chris and Sophie came round in the morning, but didn't stay for long. I tried some more high calorie drinks (chocolate fortisip and banana fortisip) but didn't like either of them. This summer I've set myself the task of decluttering and tidying my bedroom as I've got too much stuff and as a result lots of things live on my floor at the moment. Last week we got a charity clothes collection sack through the door that will be collected tomorrow (Wednesday) so I decided that was a good incentive to sort my clothes out. I just sorted through 3 drawers on Sunday, but almost filled the sack! I'm planning to sort out the clothes in my wardrobe today, but it's quite a formidable task! On Sunday I also spent quite a lot of the day just relaxing as I didn't have enough energy to do anything else, so I played on my Wii and DSi for a bit. Sunday evening we had a BBQ which Claire came round for, but I didn't have much of an appetite (as my appetite decreases when I'm very tired). However I did have some of Claire's yummy pudding (jelly with strawberries, raspberries, cherries and blueberries in it). For some reason, Alf (my younger brother) decided he'd have a shower at 11.30pm on Sunday night! So that woke my mum up and kept me awake for a bit, what a muppet!

On Monday morning I accompanied my mum to her physio appointment and then we went into town. Monday was the first day it felt really nice to not be at school any more, as the previous week had been half term, so everyone else was off school anyway. But on Monday it felt great :) In town I went to the opticians as one arm of my glasses keeps coming lose, even though my dad keeps tightening the screw up. At the opticians they just tightened the screw again and said to let them know if it came lose again, and they'd replace the screw. I also went to GAME in town and traded one of my old DSi games in, so I can get £8 off my next purchase :) When we got home I was quite tired, so relaxed for a bit. I treated myself on Amazon and bought the first series of Ashes to Ashes on DVD and Taylor Swift's Love Story Single (because one song on it - Beautiful Eyes - isn't available on iTunes). I haven't had much of an appetite recently, but really enjoyed tea last night. It was chicken, yellow peppers and mushrooms in a lovely sauce with rice. And very unusually for me, I ate all of my portion, finished off Alf's portion (as he didn't like it) and then had some more! Last night I really enjoyed watching Ashes to Ashes on TV, I think this series is better than the first. I'm a bit disappointed though that next week will be the last episode of this series.

Today I woke up early, so am quite tired as I had a late night last night. My weight this morning was the same as last week, so that's good. And when I emailed my dietician about that I also let her know which high calorie drinks I like best, so she can get me them on prescription. Surprisingly I managed to find 3 drinks I liked - Strawberry fortisip, neutral fortisip and vanilla clinutren :) I also received an email from Beverly this morning about the summer camp in America with more information. However, I've not responded yet because I'm really concerned that I might not be well enough to go. I need to have a think about it and probably a chat to my parents and see what we think, as I really don't want to miss such a fantastic opportunity, but need to consider my health. I also received my first letter from the local M.E. unit this morning along with quite a big questionnaire about my symptoms, my past medical history (eek!), my emotions... They can't put me onto their long waiting list until they've received the completed questionnaire, so I'm going to try to fill it in this afternoon so I can get it back in the post to them ASAP. On a more positive note, my Mika tickets arrived in the post this morning :D I can't wait til me and mum see him in concert again on Monday - I'm so excited! I loved his album 'Life in Cartoon Motion' and his new record 'Songs for Sorrow' is growing on me with each listen. I'm hoping that he'll play some old favourites plus some new material at the concert.