Sorry it's been a little while since I last updated, hopefully this update wont be too long, fingers crossed.
My tiredness and energy levels have been up and down this week. My mood has too - most of the time I've been fine but I have felt very down on a couple of occasions for no obvious reason. On Sat night my legs were sore which is unusual for me. I started Amitriptyline on Sat night after stopping Spasmonal because it didn't seem to be helping my tummy pains at all. My tummy pains seem to have been different this week than usual and maybe slightly better, but not dramatically better. I'll keep going with the Amitriptyline and see what happens. My nocturnalism seems to have been better some nights this week (but not all) and I seem to have been getting to sleep quicker once I've got into bed, which may be due to the Amitriptyline.
One day this week I received a write-up of my last clinic in the post from Hosp A. The letter has been written to my GP but I received a copy too. On the envelope and in the letter Hosp A got my house number wrong. Hosp B have always had my postcode wrong! :P Most of the letter was accurate but I wasn't very happy with my consultant from Hosp A saying something along the lines of 'It was agreed that Molly's fatigue is probably not due to M.E. but is probably transplant related' That was not agreed, that was just his view!
I finally got my dad to check my email to S, the transplant co-ordinator from Hosp A, and after finalising it I sent it. I received a brief response from S saying that she'd be in touch again after her week off, but the follow up at Hosp B sounds very similar to Hosp A so she thinks my transition should be simple. I wish I was that confident!
On Tue morn my weight was up to 53.3kg. It was 52.1kg a fortnight ago (when I last emailed my dietician at Hosp B) and 52.8kg last week (when I just did my weight for myself). I emailed both of my dieticians to let them know. My dietician from Hosp B was very impressed and I also got a nice reply from my dietician at Hosp A.
On Sun morn me and mum went out to the local carboot sale. We both found it quite disappointing so hopefully it'll be better next time. I didn't buy any DVDs, just one PS2 game.
On Mon I felt quite tired so didn't do much. I wrote a letter to my AYME buddy Kate and went round to the post box to send that and also to the surgery to put in an order for some more high calorie puddings. I didn't feel up to going to Alf's parents' evening with my mum and dad but I'm sure there'll be more chances for me to see his college. That evening dad went away to stay in the fishing lodge that his sister rents for a couple of days while he's on annual leave from work.
On Tue I walked round to the local shop to buy the new Radio Times and some milk and to post a rental DVD back. That morning I phoned Barnardo's to chase up an application form and the manager answered the phone. She asked if I'd been in for an interview so I told her that I'd just been asked to fill out an application form. She said she'd just got back from a holiday but she'd like to see me for an interview, so could I pop in at some point on Wed or Thur. Eeek!
On Tue aft Chris and Soph came round to compare PS games, but Sophie forgot her 4. She told me what they were though and I wouldn't have been interested in borrowing any of them. Chris and Sophie are both quite busy at the mo but they might borrow some of my games another time. We played on my PS2 together which was fun :) After they'd been round for a while I got very tired so went up to my bedroom to relax while they used our Internet because they've not managed to get the Internet set up at their new house yet. Chris did some job hunting. He's still got his current job but they've just lost some housing benefit I think so are struggling to afford the rent on their house. I'm sure they wouldn't have any problems though if they stopped spending so much on things like alcohol, cigarettes, going to the pub etc! So Chris is looking for a job where he can earn more money, but dad doesn't think he'll be able to get a more highly paid job in what he wants to do (bar and restaurant work).
On Tue eve I didn't feel too tired so went to the teenage discussion group in the village. This time rather than being held in a room in the church it was held at B's house because she couldn't get anyone to babysit for her 2 young daughters now we've changed the day. There weren't many of us there - just A and B who run it, me, my friend V and another girl we both know, K. V has told me that she can't stand K, but I thought she did very well at hiding that. The discussion was based around another 10 min video, but it wasn't quite so religious this time. I got a bit frustrated when I was trying to be 'normal' and A briefly mentioned my medical history. I also found it frustrating when B was talking about how her sister had ME and had recovered really quickly when she stopped multitasking and watching TV and I felt like it was pointed at me (I'm sure A had told B about me having ME), but I'm sure nothing was meant by it. I'm really pleased that I didn't say anything either time. The rest of the evening was good though :)
I had quite a busy day on Wed. In the morning I went to my local hair salon for an appt with my normal hairdresser (who has cut my hair since I was tiny). My hair really needed trimming but I'd kept putting it off because I don't like having to be sociable at the hairdressers :P I asked my hairdresser's advice on stopping my hair from looking so thin (I'm sure it's a side effect of some of my medication but it seems to come and go despite the doses of my medications not changing). She said she could see where it went thinner, so the best solution would be to cut my hair there, so I agreed. I don't like other people washing my hair so just went for a spray cut. However when she sprayed my hair it went wildly wavy and stuck out at all angles :P Luckily she managed to tame it a bit before I left the salon. I had 2 or 3 inches cut off which is more than I'd usually have, but my hair still ties up. And I like it, it looks much thicker now and is easier to wash, brush and care for now the split ends have gone.
On Wed aft I went to Barnardo's in town to see the manager. She seemed nice and younger than I'd expected from hearing her on the phone. It wasn't really an interview, just a short informal chat. She asked me if I'd ever done any volunteering like this before (which I haven't) and asked whether I'd like to work out the front or in the back, so I told her about the conversation I'd had with someone on the phone who had suggested that I work out the back so I'm under no pressure to go in unless I feel up to it. She gave me an application form and asked me to return next Thur to be shown around, shown how stuff works and what I'll be doing.
Then I tried to trade in my 5 unwanted PS2 games (there might be more I don't want when I've played them all a bit more, but they're the only ones I'm certain I don't want at the mo) and the shop said they'd definitely be interested and although price would depend on the actual games and the condition of them they would be able to offer me a couple of pounds for each. But they can only buy a certain value of games and consoles each day and they'd already bought their limit that day. So I'll have to go back a bit earlier another day and hope that they wont already have bought their limit. In the charity shops I bought a PS1 game and 2 DVDs (Burn After Reading and He's Just Not That Into You) for £1.50 each. Then I helped mum with a big Tesco shop where I bought The Hangover on DVD for £5.
Yesterday I helped mum with a quick Tesco shop but didn't buy anything myself. Then we called in at the cinema where we pre-booked tickets to see The Blind Side tomorrow. We ate our sandwiches for lunch in the car on our way to visit my Nan. It was lovely to see her and she seemed in good spirits :) But I became very tired while we were there so don't think I was very good company. On the way home we called in at a local shop to buy some croissants and I posted a rental DVD back. I was very tired that evening so relaxed for a while before doing a crossword with my mum which we both enjoyed. Then dad got back from his fishing break which he seemed to have enjoyed. After dad had been back a little while he said there was something different about me so asked if I'd got new glasses. When I told him I hadn't he then realised I'd had my hair cut!
One day this week my mum's friend called round with a big fleecy jacket that she didn't want any more so she wondered if any of us wanted it. It's mine now and I love it, it's so warm :)
On Wed when I'd been telling my hairdresser about Alf's college course and his love of exotic animals she told me about a exotic pet shop that she'd accidentally stumbled upon in a neighbouring village. I'd never heard of it before, but I told Alf who looked it up on the Internet last night. He thought it looked really good so went to have a look at it with dad this afternoon. They don't have any job vacancies for Alf or any chance for him to volunteer but they've taken his details and he will be able to do his work experience there. It's good that it's so close, he'll be able to walk or cycle there across the fields.
This morning I had a shower and it got me thinking. Although I find showering quite tiring at the moment, it's now much easier than it used to be for me because I don't have to spend time before showering waterproofing a central line or spend time after showering changing an illeostomy bag.
I'm having a very down day today :( Firstly Claire text mum to cancel this evening. She was going to come round for tea and bring her mum with her who we've never met before, but she's cancelled and I don't know why. However they're still going to my mum's knitting group, but I don't attend that, so I wont get to see Claire tonight or meet her mum :(
Then I overheard Alf talking to my parents about the possibility of him getting a pet. I've wanted a pet for years and my parents have always said no, so I was surprised that they were thinking about letting Alf have one. So I asked mum if I could have a pet and she said no, which I thought was very unfair so I got quite upset. Mum didn't seem to understand that I like animals as much as Alf and how much I want a pet. Alf isn't going to be getting a pet in the near future but if he makes a big effort with his college work and gets good grades then he might be allowed a chameleon or some other kind of reptile or amphibian in a tank in his room, which he'll have to take full responsibility for. At the end of the conversation it looked more like if Alf is allowed a pet I might be allowed one too, but nothing has been decided yet. If I am allowed a pet then it will have to live in my bedroom (so not a dog or cat) and be totally my responsibility. However due to my transplant I wouldn't be able to have a reptile or a bird, so I think it'll have to be a small mammal. And I'll have to get my consultant's permission too. My consultant at Hosp B has always said no to pets (although I do know other small bowel transplant recipients who have pets), but I think my consultant at Hosp A might say yes ;)
Tomorrow afternoon me and mum are going to the cinema to see The Blind Side which I'm really looking forward to as I've been waiting for the film to be released in UK cinemas for ages! And on Sun if the weather is good we'll go and browse round the local carboot sale. My only plan for next week at the moment is going to Barnardo's on Thur (and maybe getting into town a bit early to try to trade my unwanted PS2 games in), but I'm sure more things will crop up, they always do.
I've played on my PS2 a bit more since my last update. On Sat I played on Sonic Heroes a bit more on my own and tried out World Rally Championship 3 with dad. It was his choice but we both had a lot of laughs playing it because we were both appalling! I was marginally better though, so beat him :) On Sun I tried out a few games - Who Wants to be a Millionaire (just like the TV prog), Tom Clancy's Splinter Cell (not sure if it's my kind of game, so need to spend a bit more time playing it), Lord of the Rings: The Return of the King (I expected it to be some exploring and some fighting but it is all fighting so I didn't enjoy it), The Italian Job: LA Heist (I am awful at racing games, so that wasn't very successful!) Tony Hawk's Project 8 (bashing the buttons doesn't work, I need to spend some time learning and practising) and SSX3 (same thoughts as Tony Hawk's). On Tue I tried out the multiplayer options on Sonic Heroes with Chris and Sophie and then played Who Wants to be a Millionaire with Sophie. And on Tue I also tried out a new game, Lemmings for the PS1, which I loved (it's just classic Lemmings), but I got really frustrated when it would save and even complained to the eBay seller who I bought it from. After Googling the problem I discovered that you can't save PS1 games onto a PS2 memory card, but instead need a PS1 memory card. So I apologised to the person who sold me Lemmings and bought a PS1 memory card from eBay which I'm now waiting to be delivered. At the moment Alf is trying out my Need for Speed game.
This week I bought a PS2 game called Canis Canem Edit (aka Bully) from the carboot sale and a PS1 game called Jak and Daxter from a charity shop in town. I've not tried either of them out yet though. I've bought some PS2 games from eBay such as Escape from Monkey Island and Sonic Mega Collection. Escape from Monkey Island has arrived in the post already along with Need For Speed Most Wanted which I bought last week but I've not tried either of them out yet. I'm waiting for Sonic Mega Collection to be delivered. The PS1 games I've bought from eBay are Lemmings and Oh No More Lemmings and Crash Bandicoot 3, which have already arrived though I've not tried out Crash Bandicoot 3 yet, and Croc 1, which I'm waiting for. On Wed eve I decided I'd stop buying PS games from eBay while I tried out the ones I'd got but that didn't even last 24 hours because yesterday evening I couldn't resist buying the PS1 game Spyro Gateway to Glimmer from eBay :P But I checked my bank balance online the other day and it's looking good so I'm ok to buy a few games until the novelty of the PS2 wears off :)
A few days ago the next handheld Nintendo console (which will come after the DS series) was announced. The current name for it is 3DS, but I'm sure that'll change before it's launched. It will incorporate 3D without the user needing to wear special 3D glasses. You can read more about it here. I think it sounds quite exciting.
I've only watched one film since my last update which was called Fish Tank. It wasn't a cheerful film, but was very well made and acted and definitely thought-provoking. I'd recommend it if you want a gritty realistic film that makes you think. On the DVD was also a short film called Wasp that had been the inspiration for Fish Tank so I watched that too.
Since my last update I've discovered the BBC series Outnumbered as I rented the first series on DVD from Tesco DVD rental. I'd seen odd parts of the special episodes for Comic Relief and Sports Relief before so wanted to see more. This week I've watched all 6 episodes of series 1 (plus the cast interviews on the DVD) and I love it :D The first disc of the second series arrived this morning from rental and the second disc is in the post to me, so I'm looking forward to watching series 2 before series 3 starts a week tomorrow. This week I've also begun rewatching series 2 of Ashes to Ashes in preparation series 3 starting on TV next Fri. So far I've rewatched the first 3 episodes of series 2. I can't wait for series 3 :D You can see the BBC trailer here.
I seem to have watched quite a lot on TV, from the hard disc recorder and on online TV catch up services since my last update. I watched the last episode in the current series (and the last ever with Jonathan Ross of Film 2010, 2 episodes of Tracy Beaker Returns, the latest episode of Married Single Other which was very sad (the first 3 episodes were light-hearted and funny, but the next 2 episodes were very moving and a depressing. I wonder how it'll conclude on Mon), a really interesting documentary about refugees from Burma moving to the UK called True Stories: Moving to Mars (I was especially interested in this because Lizzy's husband is from Burma), the first episode in the new series of Children's Hospital, the latest episode of One Born Every Minute, both parts of an interesting BBC programme called Famous Rich and Jobless, 4Music: 4Play: Marina and the Diamonds (It's on the hard disc recorder and I've watched it a few times now), a Neil Sidaka prog with mum, Fri Night with Jonathan Ross featuring Lady Gaga (I thought watching it might help me to understand her but it didn't!), Boyzone Tribute to Stephen Gately (I only watched because I heard Mika had sung on it), Alexandra Burke performing her next single, All Night Long, on Dancing on Ice and Pixie Lott performing her latest single, Gravity, on the Alan Titchmarsh Show. I've now watched everything that I wanted to on the hard disc recorder in preparation for reformatting it, but there are still a few programmes on it that mum wants to watch.
I've had 2 songs stuck in my head a lot since my last update. I got Caravan of Love stuck in head after it was sung on Married Single Other and then again after I heard it on the radio a few days later. I don't mind that song though. More annoying was getting Telephone stuck in my head. Usually when the video comes on the music channels I flick to another channel but I thought I'd watch it through - big mistake! I don't like the song but it's very very catchy! While I was looking for that on Youtube I spotted a link on the side of the page to a Lady Gaga video I was sure I'd not seen before. Although I don't really like Lady Gaga I thought I'd have a look because her videos are always really weird, but to my surprise this one is quite normal!
I'm currently listening to The Family Jewels by Marina and the Diamonds to cheer me up. It's definitely my favourite album at the moment.
Mika was interviewed by Jools Holland on Radio 2 on Mon eve but I missed it on the radio so listened to it on iPlayer last night instead. You can listen to it here but only til Mon (Mika comes in 24 mins into the recording). Mika's latest single Kick Ass (the theme tune to the film of the same title) will be released on Mon and I'll certainly be buying it.
Friday, 26 March 2010
Saturday, 20 March 2010
Good week, PS2 and new Mika song
My good week has continued :) I've been feeling less tired than usual and have had more energy, despite being as nocturnal as ever :P I've still been feeling tired at some points, but overall I've been feeling much better this week than I usually do and have been able to do more. Fingers crossed it lasts.
Yesterday my heels were the most painful they've ever been with the plantar fasciitis. Luckily they're not too bad today.
The Spasmonal tablets that I've been taking before meals since last Fri haven't helped my tummy pains and have given me indigestion a lot. So I stopped taking those yesterday after trying them for a week. I'll be starting Amitriptyline tonight, so hopefully that'll help.
I received a letter this week with an appt for my next clinic at Hosp A on June 7th. At this clinic the plan will be to complete my transition. I've drafted the email I need to send to S about how things currently work at Hosp B, but I've not sent it yet because I'm going to ask dad to read through it and see if he can think of anything to add. And I've emailed my GP, Dr I, to let him know that once my transition is complete my Tacrolimus wont be delivered by the health care company any more but instead I'll need to get it on prescription.
And the extra Tacrolimus that I needed because I was running short was delivered on Wed.
Yesterday would have been Jessica Wales' 21st birthday. I thought of her family and close friends a lot yesterday, I can't imagine how hard the day must have been for them. RIP Jess xxx
There's been some great news on Rachy since my last update. You can read about her progress and see photos here.
Earlier in the week I was given the link to a clip of Victoria Tremlett talking about organ donation on GMTV. You can see it here.
And the second Give And Let Live Photo book that I ordered from Holly C for mum arrived in the post this week.
Holly S' Battlefront programme was repeated on Channel 4 in the early hours of yesterday morning. We have it recorded on our hard disc recorder, but that is dying and I don't want to lose the programme when it does. So my friend Lizzy recorded it onto her hard disc recorder when it was repeated yesterday and is hoping to now burn it to a DVD (she's never done it before, but hopes she'll be able to) for us. It's really frustrating not being able to record things at the moment, I think if I can watch one more programme on the hard disc recorder then I'll try wiping and reformatting it to see if we can get it to work again. If not I'll try to persuade my parents that we need to buy a new one.
My Playstation 2 was due to be delivered yesterday but I wanted to go out. I knew that the parcel would need to be signed for so I asked Alf if he would stay in and sign for it for me. He agreed but I had to pay him £2 the night before, so I did. As it turned out the PS2 was delivered before we went out yest. I eagerly unpacked it but was disappointed to find that although I had the PS2, a memory card, 2 controllers and 10 games, I had no leads to connect the PS2 to my TV or to the mains power. I was worried that the seller was deliberately not going to sell me these so I emailed her to check. While I was waiting for a response Alf contacted a friend who said he had some spare leads I could have, but it might be a few days before he could get them to me. I just wanted to play with my new toy! Later that day I got a response to the email and discovered that the seller had just forgotten to include the leads in the parcel, so she put them in the post to me first class yesterday. I didn't want to have to wait much longer to play on my PS2, but luckily the leads arrived this morn. The PS2 is now set up and working :D I've only tried out one game so far (Sonic Heroes) but have more that I want to try.
10 games came with the PS2 - 2 of which I know I'll enjoy playing (Sonic Heroes and Lord of the Rings: The Return of the King) and 2 of which I might like playing (The Italian Job LA Heist and Splinter Cell). So that leaves 6-8 that I don't want (children's games, racing games and killing games). I'm waiting to hear if Chris and Sophie want to buy any of them off me because Sophie has a PS2. If not I'll check that they all work and then trade them in at a local game shop when I next go to town. I thought about trading them in at GAME but think I might get a better deal for them at a different game shop in the other local town.
As well as the 10 games that came with the PS2 I've also bought some more. I've had a look on the high street but the prices of the pre-owned PS1 and PS2 games vary greatly as does the quality of the discs. All of Cash Converters PS1 discs look too scratched to play but I did buy a PS2 game (Tony Hawk's Project 8) in there. It was £4 though, so a bit more expensive than I think I'm going to like to pay for games. GAME are selling used PS2 games for £5 so I've not bought any from there yet and wont unless I'm sure I'll like them. And when I went to a different town yesterday I bought a PS1 game (Who Wants to be a Millionaire) and PS2 game (SSX 3) in good condition from a charity shop for £1 each, bargain.
I've also bought a PS2 game (Need for Speed Most Wanted) for £2.70 on eBay which should be on it's way to me soon. And I bought a bundle of 2 PS2 games (Rayman Revolution and Rayman 3) plus a PS1 game (Rayman) for just £3.80 this morning but the seller's PayPal isn't working so I've got to try to pay them by postal order instead.
On Tue I only went out briefly to buy the Radio Times from the local shop. My dad has been on annual leave since Wed and he's off next week too. That's really been confusing me because he's usually only around at the weekends, so each day since Wed I've thought it's Sat! He seems to have been enjoying his annual leave so far - he went fishing on Wed, did loads of work in the garden on Thur and went out with me and mum yest. Next week he's looking forward to staying at the fishing resort where his sister and her partner rent a cabin for a few days.
On Wed I went into town while mum gave a talk at the library there about knitting because they're setting up their own knitting group like mum's Knit Lit at our village library. I successfully bought myself a new pair of slippers because my slipper boots were falling apart. When I'd finished my shopping I went for a drink in the library cafe and then surfed the Internet on one of the computers there til my mum had finished.
Then on Wed eve Claire came round for tea and we had fun playing on New Super Mario Bros Wii together. We didn't make any progress though. Later in the evening we went to the local cinema to see The Lovely Bones. I didn't really like it, it was very weird and quite sad. After that Claire came back briefly for a drink. Later that evening I caught up on my emails.
On Thur I had my 3rd Pathways to Work appt. I popped to the shops in town briefly before that. I used to have problems with Alfie helping himself to money from my purse, so I started to lock it away in a lockable box I had. I trust him more now though, so had stopped locking my money away. Dad suggested I restart now we know Alf is smoking again, but when I tried to put my money away I discovered that the lock on my box had broken. So I was looking out for a lockable cash tin in town but the cheapest I could find cost £9 and I thought that was too much. So my money isn't locked away at the moment. As well as the PS2 game from Cash Converters that I've already mentioned, I also bought a t-shirt from Sainsburys.
My Pathways to Work appt went well, my advisor was really pleased that I'd managed to phone the charity shops and was planning to start volunteering at Barnardo's. She suggested I phone them regularly to chase up the application form until I receive it. That appt only took 30mins as it was just updating my records on the computer. And we chatted about nails too because she was surprised to find someone else with long nails like her! Hopefully next month when I see her we'll be able to talk about how my volunteering is going.
Yesterday I went out with my parents. Firstly we headed to Tesco for a very quick shop and mum needed to return 2 items of clothing. They were both in the same bag yet she only remembered to return one! After that we headed to a town about 40mins away because mum had heard that there was a wool shop there. We all went in a few charity shops were we all got some good bargains. Dad bought himself a pair of jeans and as well as getting a PS1 and a PS2 game (mentioned earlier), I also bought a Victoria Wood DVD for my mum and a DVD of comedy clips for us all. The PS1 game, PS2 game and 2 DVDs all came to less than £4! While mum and dad went in the wool shop I went in Blockbuster, but didn't buy anything.
After that we headed to my uncle (dad's brother) and aunt's house. They were the 2 who celebrated their 45th wedding anniversary last month at a local restaurant. They've lived in their current house, about an hour's drive from us, for nearly 5 years now but we'd never visited them before yesterday. So because they live in the same direction as the town with the wool we went to see them. My uncle made us lunch. I'd planned to take sandwiches with me, but had left them at home. Whoops. The curry he made was nice, but a bit spicy for me so I couldn't eat as much as I would have liked to. We spent about 3 hours there in total which involved lots of chatting, trying to help my uncle sort his computer out (but both him and dad ignored my suggestions so that wasn't very successful!), admiring their knitted toilet roll covers (and sending a photo to Claire of course!), helping my aunt send some photos from her phone to their daughter, listening to some of my uncle's 100 year old records, walking round their land and seeing all their animals (2 cats, 4 geese, chickens...), talking about knitting (no surprise with my mum) and looking at their wedding photos from 45 years ago and laughing at the photos of my dad when he was 15. My uncle is the one who made my mum's giant knitting needles, so we took them with us so he could finish them off by gluing the ends in place. It was a nice but long afternoon so I fell asleep in the car on the way home :P
Today I'm home on my own, but I like it :) Alf stayed at a friend's last night, dad has gone out fishing and mum has gone to a knitting show in London with Claire and another of her friends. I phoned her when I got up this morning and she was on the train on the way there. She'd prebooked tickets for the 3 of them as that works out cheaper than buying on the door. But she'd left the tickets at home, so they'd have to buy new tickets once they got there. Whoops! My mum makes me laugh a lot. Last night when she got home from work she told me that she'd asked someone how old you have to be to join the Over Sixties Club, hehe! :P
Tomorrow morn I'm looking forward to browsing round the local carboot sale for bargain PS games and DVDs :D I'm also going to see if I can recognise the 2 stalls where I bought the wrong region DVDs last week and if so I'm going to ask if I can swap them. On Mon I might go into town to try to trade in my unwanted PS2 games and to chase Barnardo's up about the application form. That aft is Alf's parents' eve, so if I feel up to it I'm going to accompany my parents to that because I've not seen Alf's college before so that'll be interesting. On Tue eve I'm hoping to attend the teenage discussion group in the village.
Once again I've not done much reading this week but I did enjoy flicking through the latest issue of Cheers (AYME's bi-monthly magazine) which arrived in the post this week. I've also played on my DSi a bit more but am getting stuck on my current game, Yoshi's Island DS, now.
I discovered a few days ago that Mika sings the theme tune for a new film that is coming out soon called Kick Ass. The film, about Marvel Superheroes, doesn't interest me at all, but it's exciting that Mika sings the theme tune and that it will be released as a single. Some of Mika's singles don't get much publicity but hopefully this will because it's linked to a film and because it's produced by the famous music producer Red One (this song doesn't have the shout-out at the beginning though). You can see it here. I'm not that keen on the video because it's clips of the film interspersed with clips of Mika and I'd much prefer it all to be clips of Mika :P But I understand why they've done it that way. I like Mika with glasses, I think they suit him. I wasn't sure about the song to start with because it sounds much more computerised than his songs usually do, but it still has that distinctive Mika sound. After just one listen it was firmly stuck in my head, it's definitely catchy, and I've decided I like it :)
Since my last update I've watched a couple of films. I rewatched The Incredibles, but didn't enjoy it as much as I remembered I did last time. Hmmm. I also watched a Sandra Bullock film called The Net (and its extra features) which I rented. I loved it and would highly recommend it. It's got a very original plot, is quite a tense thriller and Sandra Bullock is as great as ever. In fact I then bought the DVD from eBay because I knew it was a film that I wanted to share with mum and would want to rewatch. I bought it for just £2. The DVD arrived this morning, just 2 days after I bought it, and is in perfect condition :) And today I found a trailer for Shrek Forever After on the Internet. You can see it here. I've loved all 3 Shrek films so far, but that trailer doesn't excite me. I'm sure I'll be seeing it in the cinema in 3D anyway when it's released this summer and hopefully it'll be as good as the other Shrek films, fingers crossed.
Since my last update I've also watched the first ever episode of Blackadder because I rented the DVD of the first series. I didn't enjoy it as much as I thought I would though, so I've not watched any more episodes and have returned the DVD.
I've not watched much on TV since my last update but do have loads to watch on iPlayer because the hard disc recorder isn't working, grrr. I've watched Sport Relief does Dragons' Den, One Born Every Minute and Sport Relief. I watched Sport Relief in the background while I was doing other stuff, but was waiting for interesting parts. There weren't many. James Corden's sketch as Smithy was the highlight of the programme for me, it was brilliant :D I was looking forward to seeing Annie Lennox perform but would much rather her perform one of her own songs than Bridge Over Troubled Water. And the Ashes to Ashes special didn't live up to my expectations either. They clearly didn't worry about the plot because it was all about spotting the 80s celebs in it. But of course I didn't recognise any of them, but did notice the poor plot. I was very excited to find out the other day that series 3 of Ashes to Ashes is starting on Friday April 2nd at 9pm. I can't wait! I'm a bit disappointed it will be shown on Fridays though as that will mean that mum wont be able to watch every other one live due to Knit Lit. So we need to have some kind of working hard disc recorder by then if not before.
Yesterday my heels were the most painful they've ever been with the plantar fasciitis. Luckily they're not too bad today.
The Spasmonal tablets that I've been taking before meals since last Fri haven't helped my tummy pains and have given me indigestion a lot. So I stopped taking those yesterday after trying them for a week. I'll be starting Amitriptyline tonight, so hopefully that'll help.
I received a letter this week with an appt for my next clinic at Hosp A on June 7th. At this clinic the plan will be to complete my transition. I've drafted the email I need to send to S about how things currently work at Hosp B, but I've not sent it yet because I'm going to ask dad to read through it and see if he can think of anything to add. And I've emailed my GP, Dr I, to let him know that once my transition is complete my Tacrolimus wont be delivered by the health care company any more but instead I'll need to get it on prescription.
And the extra Tacrolimus that I needed because I was running short was delivered on Wed.
Yesterday would have been Jessica Wales' 21st birthday. I thought of her family and close friends a lot yesterday, I can't imagine how hard the day must have been for them. RIP Jess xxx
There's been some great news on Rachy since my last update. You can read about her progress and see photos here.
Earlier in the week I was given the link to a clip of Victoria Tremlett talking about organ donation on GMTV. You can see it here.
And the second Give And Let Live Photo book that I ordered from Holly C for mum arrived in the post this week.
Holly S' Battlefront programme was repeated on Channel 4 in the early hours of yesterday morning. We have it recorded on our hard disc recorder, but that is dying and I don't want to lose the programme when it does. So my friend Lizzy recorded it onto her hard disc recorder when it was repeated yesterday and is hoping to now burn it to a DVD (she's never done it before, but hopes she'll be able to) for us. It's really frustrating not being able to record things at the moment, I think if I can watch one more programme on the hard disc recorder then I'll try wiping and reformatting it to see if we can get it to work again. If not I'll try to persuade my parents that we need to buy a new one.
My Playstation 2 was due to be delivered yesterday but I wanted to go out. I knew that the parcel would need to be signed for so I asked Alf if he would stay in and sign for it for me. He agreed but I had to pay him £2 the night before, so I did. As it turned out the PS2 was delivered before we went out yest. I eagerly unpacked it but was disappointed to find that although I had the PS2, a memory card, 2 controllers and 10 games, I had no leads to connect the PS2 to my TV or to the mains power. I was worried that the seller was deliberately not going to sell me these so I emailed her to check. While I was waiting for a response Alf contacted a friend who said he had some spare leads I could have, but it might be a few days before he could get them to me. I just wanted to play with my new toy! Later that day I got a response to the email and discovered that the seller had just forgotten to include the leads in the parcel, so she put them in the post to me first class yesterday. I didn't want to have to wait much longer to play on my PS2, but luckily the leads arrived this morn. The PS2 is now set up and working :D I've only tried out one game so far (Sonic Heroes) but have more that I want to try.
10 games came with the PS2 - 2 of which I know I'll enjoy playing (Sonic Heroes and Lord of the Rings: The Return of the King) and 2 of which I might like playing (The Italian Job LA Heist and Splinter Cell). So that leaves 6-8 that I don't want (children's games, racing games and killing games). I'm waiting to hear if Chris and Sophie want to buy any of them off me because Sophie has a PS2. If not I'll check that they all work and then trade them in at a local game shop when I next go to town. I thought about trading them in at GAME but think I might get a better deal for them at a different game shop in the other local town.
As well as the 10 games that came with the PS2 I've also bought some more. I've had a look on the high street but the prices of the pre-owned PS1 and PS2 games vary greatly as does the quality of the discs. All of Cash Converters PS1 discs look too scratched to play but I did buy a PS2 game (Tony Hawk's Project 8) in there. It was £4 though, so a bit more expensive than I think I'm going to like to pay for games. GAME are selling used PS2 games for £5 so I've not bought any from there yet and wont unless I'm sure I'll like them. And when I went to a different town yesterday I bought a PS1 game (Who Wants to be a Millionaire) and PS2 game (SSX 3) in good condition from a charity shop for £1 each, bargain.
I've also bought a PS2 game (Need for Speed Most Wanted) for £2.70 on eBay which should be on it's way to me soon. And I bought a bundle of 2 PS2 games (Rayman Revolution and Rayman 3) plus a PS1 game (Rayman) for just £3.80 this morning but the seller's PayPal isn't working so I've got to try to pay them by postal order instead.
On Tue I only went out briefly to buy the Radio Times from the local shop. My dad has been on annual leave since Wed and he's off next week too. That's really been confusing me because he's usually only around at the weekends, so each day since Wed I've thought it's Sat! He seems to have been enjoying his annual leave so far - he went fishing on Wed, did loads of work in the garden on Thur and went out with me and mum yest. Next week he's looking forward to staying at the fishing resort where his sister and her partner rent a cabin for a few days.
On Wed I went into town while mum gave a talk at the library there about knitting because they're setting up their own knitting group like mum's Knit Lit at our village library. I successfully bought myself a new pair of slippers because my slipper boots were falling apart. When I'd finished my shopping I went for a drink in the library cafe and then surfed the Internet on one of the computers there til my mum had finished.
Then on Wed eve Claire came round for tea and we had fun playing on New Super Mario Bros Wii together. We didn't make any progress though. Later in the evening we went to the local cinema to see The Lovely Bones. I didn't really like it, it was very weird and quite sad. After that Claire came back briefly for a drink. Later that evening I caught up on my emails.
On Thur I had my 3rd Pathways to Work appt. I popped to the shops in town briefly before that. I used to have problems with Alfie helping himself to money from my purse, so I started to lock it away in a lockable box I had. I trust him more now though, so had stopped locking my money away. Dad suggested I restart now we know Alf is smoking again, but when I tried to put my money away I discovered that the lock on my box had broken. So I was looking out for a lockable cash tin in town but the cheapest I could find cost £9 and I thought that was too much. So my money isn't locked away at the moment. As well as the PS2 game from Cash Converters that I've already mentioned, I also bought a t-shirt from Sainsburys.
My Pathways to Work appt went well, my advisor was really pleased that I'd managed to phone the charity shops and was planning to start volunteering at Barnardo's. She suggested I phone them regularly to chase up the application form until I receive it. That appt only took 30mins as it was just updating my records on the computer. And we chatted about nails too because she was surprised to find someone else with long nails like her! Hopefully next month when I see her we'll be able to talk about how my volunteering is going.
Yesterday I went out with my parents. Firstly we headed to Tesco for a very quick shop and mum needed to return 2 items of clothing. They were both in the same bag yet she only remembered to return one! After that we headed to a town about 40mins away because mum had heard that there was a wool shop there. We all went in a few charity shops were we all got some good bargains. Dad bought himself a pair of jeans and as well as getting a PS1 and a PS2 game (mentioned earlier), I also bought a Victoria Wood DVD for my mum and a DVD of comedy clips for us all. The PS1 game, PS2 game and 2 DVDs all came to less than £4! While mum and dad went in the wool shop I went in Blockbuster, but didn't buy anything.
After that we headed to my uncle (dad's brother) and aunt's house. They were the 2 who celebrated their 45th wedding anniversary last month at a local restaurant. They've lived in their current house, about an hour's drive from us, for nearly 5 years now but we'd never visited them before yesterday. So because they live in the same direction as the town with the wool we went to see them. My uncle made us lunch. I'd planned to take sandwiches with me, but had left them at home. Whoops. The curry he made was nice, but a bit spicy for me so I couldn't eat as much as I would have liked to. We spent about 3 hours there in total which involved lots of chatting, trying to help my uncle sort his computer out (but both him and dad ignored my suggestions so that wasn't very successful!), admiring their knitted toilet roll covers (and sending a photo to Claire of course!), helping my aunt send some photos from her phone to their daughter, listening to some of my uncle's 100 year old records, walking round their land and seeing all their animals (2 cats, 4 geese, chickens...), talking about knitting (no surprise with my mum) and looking at their wedding photos from 45 years ago and laughing at the photos of my dad when he was 15. My uncle is the one who made my mum's giant knitting needles, so we took them with us so he could finish them off by gluing the ends in place. It was a nice but long afternoon so I fell asleep in the car on the way home :P
Today I'm home on my own, but I like it :) Alf stayed at a friend's last night, dad has gone out fishing and mum has gone to a knitting show in London with Claire and another of her friends. I phoned her when I got up this morning and she was on the train on the way there. She'd prebooked tickets for the 3 of them as that works out cheaper than buying on the door. But she'd left the tickets at home, so they'd have to buy new tickets once they got there. Whoops! My mum makes me laugh a lot. Last night when she got home from work she told me that she'd asked someone how old you have to be to join the Over Sixties Club, hehe! :P
Tomorrow morn I'm looking forward to browsing round the local carboot sale for bargain PS games and DVDs :D I'm also going to see if I can recognise the 2 stalls where I bought the wrong region DVDs last week and if so I'm going to ask if I can swap them. On Mon I might go into town to try to trade in my unwanted PS2 games and to chase Barnardo's up about the application form. That aft is Alf's parents' eve, so if I feel up to it I'm going to accompany my parents to that because I've not seen Alf's college before so that'll be interesting. On Tue eve I'm hoping to attend the teenage discussion group in the village.
Once again I've not done much reading this week but I did enjoy flicking through the latest issue of Cheers (AYME's bi-monthly magazine) which arrived in the post this week. I've also played on my DSi a bit more but am getting stuck on my current game, Yoshi's Island DS, now.
I discovered a few days ago that Mika sings the theme tune for a new film that is coming out soon called Kick Ass. The film, about Marvel Superheroes, doesn't interest me at all, but it's exciting that Mika sings the theme tune and that it will be released as a single. Some of Mika's singles don't get much publicity but hopefully this will because it's linked to a film and because it's produced by the famous music producer Red One (this song doesn't have the shout-out at the beginning though). You can see it here. I'm not that keen on the video because it's clips of the film interspersed with clips of Mika and I'd much prefer it all to be clips of Mika :P But I understand why they've done it that way. I like Mika with glasses, I think they suit him. I wasn't sure about the song to start with because it sounds much more computerised than his songs usually do, but it still has that distinctive Mika sound. After just one listen it was firmly stuck in my head, it's definitely catchy, and I've decided I like it :)
Since my last update I've watched a couple of films. I rewatched The Incredibles, but didn't enjoy it as much as I remembered I did last time. Hmmm. I also watched a Sandra Bullock film called The Net (and its extra features) which I rented. I loved it and would highly recommend it. It's got a very original plot, is quite a tense thriller and Sandra Bullock is as great as ever. In fact I then bought the DVD from eBay because I knew it was a film that I wanted to share with mum and would want to rewatch. I bought it for just £2. The DVD arrived this morning, just 2 days after I bought it, and is in perfect condition :) And today I found a trailer for Shrek Forever After on the Internet. You can see it here. I've loved all 3 Shrek films so far, but that trailer doesn't excite me. I'm sure I'll be seeing it in the cinema in 3D anyway when it's released this summer and hopefully it'll be as good as the other Shrek films, fingers crossed.
Since my last update I've also watched the first ever episode of Blackadder because I rented the DVD of the first series. I didn't enjoy it as much as I thought I would though, so I've not watched any more episodes and have returned the DVD.
I've not watched much on TV since my last update but do have loads to watch on iPlayer because the hard disc recorder isn't working, grrr. I've watched Sport Relief does Dragons' Den, One Born Every Minute and Sport Relief. I watched Sport Relief in the background while I was doing other stuff, but was waiting for interesting parts. There weren't many. James Corden's sketch as Smithy was the highlight of the programme for me, it was brilliant :D I was looking forward to seeing Annie Lennox perform but would much rather her perform one of her own songs than Bridge Over Troubled Water. And the Ashes to Ashes special didn't live up to my expectations either. They clearly didn't worry about the plot because it was all about spotting the 80s celebs in it. But of course I didn't recognise any of them, but did notice the poor plot. I was very excited to find out the other day that series 3 of Ashes to Ashes is starting on Friday April 2nd at 9pm. I can't wait! I'm a bit disappointed it will be shown on Fridays though as that will mean that mum wont be able to watch every other one live due to Knit Lit. So we need to have some kind of working hard disc recorder by then if not before.
Tuesday, 16 March 2010
New tablets, Playstation 2 and broken HDR
Sorry for not updating for a little while. Hopefully this wont be too long, fingers crossed. I've just noticed the my last blog update was my 200th blog post :D
As I said in my last blog update, my consultant from Hosp A prescribed me 2 new tablets that would hopefully help my tummy pains. He didn't say whether to try them both at the same time or separately, but I decided to try them one at a time so if my tummy pains eased I'd know which tablet it was due to. I was prescribed Spasmonal which helps reduce IBS type cramps and Amitriptyline which lessens the signals from the nerves in the colon, which in turn reduces the pain. I started taking Spasmonal last Fri evening and have been taking it up to 3 times a day with or just before meals (when I remember). Unfortunately my tummy pains don't seem to have improved and were very bad again yesterday afternoon despite taking a tablet with lunch. And I had indigestion all day on Sun which I can only think is due to that as I didn't eat anything different. I'm going to keep trying with the Spasmonal til Fri to give it a week and if there's still no improvement in my tummy pains I'll stop taking that and try the Amitriptyline instead. And if the Amitriptyline doesn't work I'll then try them both together. So hopefully I'll find a solution to my tummy pains, fingers crossed.
I'm still as nocturnal as ever (I was up til 3.30am last night!) but if I try Amitriptyline from the weekend I'm hopeful that that might help my sleep too.
My dietician doesn't want me to email her with my weight until next Tue because we're doing it fornightly now, but I decided to weigh myself anyway this morning. And my weight was up from 52.1kg to 52.8kg :)
My transition has continued to worry me and I've had trouble sleeping on a couple of nights because of that :( I'm still planning to email S about how things currently work with me under Hosp B, but haven't written that email yet. I spoke to my friend A (who is a similar age to me) from Hosp B last week and her transition isn't moving as quickly as mine, she's not sure when she'll leave Hosp B yet.
On Fri I received a letter from Hosp B with my last Tac level and saying that I needed all my bloods repeated in a fortnight. The letter was dated last Mon but I saw my consultant on Wed and he said because my bloods were all back within the normal range I didn't need bloods doing for 3 months this time. So I'm going to ignore the letter.
When I put all my tablets out for the week ahead on Sun I realised I was low on Tacrolimus (my anti rejection drug). I currently have that delivered by a healthcare company, so the shortage suggests that I didn't get the right amount with the last delivery as I don't usually run out between the regular deliveries. So I phoned them up yesterday and they're going to deliver some more tomorrow, which is good as I'd run out on Sun otherwise.
I've been keeping updated with Rachy's progress on her blog here. It was great to hear that she was able to come off the ventilator on Fri but unfortunately she then had a setback so had to be ventilated again and is still on the ventilator at the moment. I know her journey to recovery will take a while but she's very strong. I sent her a card yesterday. I wanted to make one, but didn't get round to it, so ended up buying her a nice one instead. If you want to send her a card the address is on her blog.
I showed my mum Holly C's Give and Let Live photography book a few days ago and like me, she loved it. So mum has now ordered her own copy of it from Holly :)
And my friend Emily was on Channel 5 news last week. You can see it here.
Last Wed evening I didn't do much after the clinic. But I did attempt to get some tickets for my family to see an episode of QI being filmed in the summer. I'm still waiting to hear if my ticket request has been successful, so fingers crossed. And I bought myself this wall decal from eBay, which arrived in the post this morning. I'll post photos once it's up :)
I've been out a few times in the last week. I didn't get out on Thur because I was very tired from the clinic the previous day. But on Fri I was feeling much better so I joined mum and her friend having lunch out at a restaurant in town. I rarely eat out so that was nice :) It was an Italian restaurant though and I'm not allowed to eat shellfish or blue cheese and I don't like tomatoes (or tomato sauce) and pizza. So it was difficult finding something to eat on their menu! I ended up having a chicken and mushroom risotto, but instead of the tomato sauce I had a garlic sauce on it instead. After the meal we looked round the shops and I just bought one DVD (Lord of the Rings: The Fellowship of the Ring). I also called in at Barnardo's to pick up an application form, but they'd run out. So they took my address and will post me one out when they get some more. All the staff in the shop were lovely :) Once we got home I popped out to the surgery to pick up my new tablets and to the local shop to post back a rental DVD and withdraw some money from the cash machine.
On Saturday I was exhausted so didn't get out. But on Sun I felt better so had a lovely day. Mum didn't want a present for Mothers Day, but when I saw this pair of earrings I knew she'd love them so had to buy them for her. I had to let her know about them though so she could choose which colour she wanted. She went for purple like I thought she would. I ordered them from Folksy on Fri morning, they were dispatched later that day and they arrived on Sat so I could give them to mum on Sun! And she loves them :D
On Sun morning while dad was out swimming and picking Alf up from a friend's house where he'd spent the night, me and mum went to the local carboot sale to browse round. I love the return of the slightly warmer weather :) Mum was very happy with what she bought. I bought 6 DVDs at bargain prices, so they totalled just £4.50! Unfortunately I assumed they'd all be European DVDs but once I got home I discovered I was wrong - 3 of them were from different regions and so I can't watch them :( I can't unlock either of the DVD players in the house to play different region discs and my laptop wont either. The 3 DVDs that I bought which will play are Closer, Breakfast at Tiffany's and Lost in Translation. The 3 DVDs which wont play are Sense and Sensibility, Little Women and The Net. I'm not too bothered about Sense and Sensibility and Little Women, I'll just rent them at some point instead. But I was very disappointed about The Net because I was really looking forward to watching it as it stars Sandra Bullock. I tried to order a cheap copy from Amazon marketplace but that order was cancelled because they were out of stock. The only other copies available were a bit more expensive so I decided to hold off buying it until I've watched a rental copy. So I added it to my DVD rental list (as a high priority choice) on Sun and it was dispatched yesterday so I received it this morning :)
Mum and dad went to Chris and Sophie's for lunch on Sun but I stayed at home. Then when mum and dad got back us 3 went to visit my Nan. I should have guessed that we wouldn't be the only ones visiting her on Mother's Day afternoon, but I didn't give it a thought so was quite surprised when some other relatives were there. Dad's brother and his wife (who's wedding anniversary meal we went to last month) were there as well as their daughter (my cousin). I was a bit worried when we got there because there were more people than I expected, but it went ok. Because there were 7 of us there though there were often 2 or 3 conversations going at once, eek! My Nan was really pleased to see us all. And my uncle didn't mention my ME but was odd as usual :P His wife was lovely like she always is. And it was great to see my cousin as I'd not seen her for years. I think she might be in her 30s but I'm not really sure - I'm rubbish at guessing ages. I don't think many families would have such deep and lengthy conversations about marijuana like my family do, lol!
My Nan saw the cardiologist yesterday after months of waiting. The big relief is that she doesn't need an operation. Phew. Her heart problem are just related to her age. I don't know much more because my parents spoke to her on the phone, but she seemed very positive after seeing the cardiologist :)
And I had a nice time on Sun eve doing a jigsaw with my mum that she'd bought at the carboot sale that morning :)
On Sun eve I also discovered that Alf had pierced his own lip! I don't mind piercings but the idea of having one in your mouth is weird and self piercing - yuk! Alf said he did it himself because he didn't have enough money to pay to have it done. But he didn't get organised in advance with anything to put in it so by the time he got something from a friend at college yesterday the piercing had closed up. He'll probably attempt it again though. Mad!
I was surprised that I didn't feel exhausted yesterday after such a busy day on Sun. So me and mum went into town for a couple of hours to look round the shops (especially the charity shops). We also stopped for drinks in a coffee shop and called in the library where I borrowed a DVD (The Darjeeling Limited, mum's friend recommended when we saw her last Fri). I only bought one DVD (The Secret Garden) and I looked for some new slippers, because my current ones are falling apart, but with no success.
While we were in town yesterday afternoon afternoon I looked at the prices of some Playstations and Playstation 2s. I'm always surprised at how many PS1 and PS2 games there are in some charity shops and at the carboot sales we go to and how cheap they are. So I'd been thinking about picking up a second hand Playstation or Playstation 2 for a while but hadn't seen any at carboot sales recently. So I checked the prices of preowned ones in a couple of shops while we were out yesterday but didn't buy one as I wanted to check prices on the Internet first. Looking at them in shops helped me decide which model I wanted. I decided I wanted to get a Playstation 2 rather than a Playstation because then I would be able to play a wider range of games on it and I decided I wanted a slim model to fit better next to my Wii on the shelf under my TV. I had a look on the Internet last night and generally they were more expensive than those on the high street apart from on eBay. I tried to bid for a couple on eBay but I'm rubbish at bidding so either got outbid at the last minute or the price went higher than I was willing to pay. Then I found a perfect bundle available as a buy it now option, so I bought it. It will be delivered on Fri. Within the bundle I bought a silver (much nicer than the black) Playstation 2 slim, 2 controllers, all the relevant leads, a memory card and £10 games! And including postage that cost me £52 which I don't think is bad, especially as a new Playstation 2 without any games is selling for about £100. I only like the sound of 2 of the games (Sonic Heroes and Lord of the Rings: The Return of the King), so the other 8 I'm either going to sell to my older brother Chris or trade in at somewhere like Game.
I'm not going out today but am working through some jobs on my to-do list, such as updating my blog. This morning I received a lovely letter from Lizzy's husband's niece who lives in Burma :) And I also received the latest magazine from PINNT so I'll read that at some point.
Tomorrow we'll be waiting in for my Tac delivery and then that evening Claire is coming round for tea before we go to the cinema to see The Lovely Bones. On Thur afternoon I've got my Pathways to Work appt. I updated my CV the other day because I realised I'd got 3 more voluntary things (related to AYME) to add to it :) On Fri I'll be waiting in for my new Playstation 2 and then playing with it once it arrives :) No plans for Sat yet. And on Sun morn I'm hoping to browse round the local carboot sale again.
I received a letter through the door the other day with details of the next meeting of the teenage discussion group. The next meeting will be next Tue (23rd) and will be at the house of one of the leaders. Hopefully I'll feel well enough to go.
You may remember that shortly before Christmas I attended my first AYME meet-up at Lucy's house. I heard last night that she's planning another meet-up on April 10th, which I'm hoping to attend.
Towards the end of last week I discovered that our hard disc recorder had broken. It had been playing up for a while (it's quite old and has been very well used), but when I checked it I found it had only recorded one of five programmes I'd set it to record. I was able to watch the programmes on iPlayer though. I cleared lots off the hard disc and then did a test recording, which worked. But then when I set it to record manually and it told me it was recording it didn't actually record. Grrr. I've found it quite frustrating not being able to record things this week. I researched new HDRs and found one that looked good which also included a DVD recorder. I offered to go halves with my parents to buy it but dad said no because he thinks it's too expensive. And he thinks the old one will work again if we reformat the hard disc, but I'm doubtful. And even if it appears to work better I'm not sure I'll be able to trust it again. If we reformat it the whole hard drive will be wiped so we'll lose everything we've recorded on it. And if we replace it with a new one we'll also lose everything we've recorded. I've been watching through lots of the recorded programmes this week in preparation for losing them all. There are 2 recordings that I really don't want to lose though - Holly S's Battlefront programme (because it's something I was involved with) and an old Japanese film called Escapade in Japan (because it features parts of Japan I've been to, but it isn't available on DVD). Luckily Holly's Battlefront programme is repeated later this week (Fri morning at 4.45am if you missed it last time round) so I'm going to ask my friend Lizzy if she can record it to DVD for me. And I'll just have to lose the Japanese film, never mind.
So on TV this week I've watched the final episode of Syrian School, Film 2010, one part of Crufts 2010, a documentary called Too Poor for Posh School, a programme about Pink which featured an interview with her and some performances, Fri Night with Jonathan Ross (featuring Johnny Depp and Tim Burton), a fascinating documentary called The Pixar Story, Fri Night with Jonathan Ross (no Cheryl Cole as planned, but Charlotte Church and James Corden), an programe about Ellie Goulding which featured performances and a very short interview, an interesting programme about a railway journey through Japan, a documentary called Geisha Girl, the latest episode of Married Single Other (which was very sad), a BBC programme about kidney transplants called Diet or my Husband Dies and the music channels.
I've rewatched Finding Nemo this week and have also watched some new films. I loved Sunshine Cleaning and Erin Brockovich and would highly recommend them both. I also watched a weird film called The Virgin Suicides and started a film that I recorded from the TV many months ago called Framed, but I didn't want to finish it.
I've listened to some music as usual including Pixie Lott, Ellie Goulding and Marina and the Diamonds. I was happy to discover that Marina's next single will be I Am Not A Robot, which I think is a great song :)
And I've continued to play on my newest DS game, Yoshi's Island.
I've just remembered that Lou posted a meme on her blog recently (you can see it here), so I'll give it a go as I conclude this blog update.
Give me 5 foods you never want to eat:
~ Peanut butter - it just has the most disgusting texture, yuk.
~ Mince -it has a weird texture which I don't like.
~ Offal - the idea is just horrible.
And I'm stuck. There are other foods I don't like, but I don't want to say never to any of them as I might like them when I try them again in the future. I've only been eating for 3 years so I'm still discovering new foods and some take a few tries for me to decide I like.
As I said in my last blog update, my consultant from Hosp A prescribed me 2 new tablets that would hopefully help my tummy pains. He didn't say whether to try them both at the same time or separately, but I decided to try them one at a time so if my tummy pains eased I'd know which tablet it was due to. I was prescribed Spasmonal which helps reduce IBS type cramps and Amitriptyline which lessens the signals from the nerves in the colon, which in turn reduces the pain. I started taking Spasmonal last Fri evening and have been taking it up to 3 times a day with or just before meals (when I remember). Unfortunately my tummy pains don't seem to have improved and were very bad again yesterday afternoon despite taking a tablet with lunch. And I had indigestion all day on Sun which I can only think is due to that as I didn't eat anything different. I'm going to keep trying with the Spasmonal til Fri to give it a week and if there's still no improvement in my tummy pains I'll stop taking that and try the Amitriptyline instead. And if the Amitriptyline doesn't work I'll then try them both together. So hopefully I'll find a solution to my tummy pains, fingers crossed.
I'm still as nocturnal as ever (I was up til 3.30am last night!) but if I try Amitriptyline from the weekend I'm hopeful that that might help my sleep too.
My dietician doesn't want me to email her with my weight until next Tue because we're doing it fornightly now, but I decided to weigh myself anyway this morning. And my weight was up from 52.1kg to 52.8kg :)
My transition has continued to worry me and I've had trouble sleeping on a couple of nights because of that :( I'm still planning to email S about how things currently work with me under Hosp B, but haven't written that email yet. I spoke to my friend A (who is a similar age to me) from Hosp B last week and her transition isn't moving as quickly as mine, she's not sure when she'll leave Hosp B yet.
On Fri I received a letter from Hosp B with my last Tac level and saying that I needed all my bloods repeated in a fortnight. The letter was dated last Mon but I saw my consultant on Wed and he said because my bloods were all back within the normal range I didn't need bloods doing for 3 months this time. So I'm going to ignore the letter.
When I put all my tablets out for the week ahead on Sun I realised I was low on Tacrolimus (my anti rejection drug). I currently have that delivered by a healthcare company, so the shortage suggests that I didn't get the right amount with the last delivery as I don't usually run out between the regular deliveries. So I phoned them up yesterday and they're going to deliver some more tomorrow, which is good as I'd run out on Sun otherwise.
I've been keeping updated with Rachy's progress on her blog here. It was great to hear that she was able to come off the ventilator on Fri but unfortunately she then had a setback so had to be ventilated again and is still on the ventilator at the moment. I know her journey to recovery will take a while but she's very strong. I sent her a card yesterday. I wanted to make one, but didn't get round to it, so ended up buying her a nice one instead. If you want to send her a card the address is on her blog.
I showed my mum Holly C's Give and Let Live photography book a few days ago and like me, she loved it. So mum has now ordered her own copy of it from Holly :)
And my friend Emily was on Channel 5 news last week. You can see it here.
Last Wed evening I didn't do much after the clinic. But I did attempt to get some tickets for my family to see an episode of QI being filmed in the summer. I'm still waiting to hear if my ticket request has been successful, so fingers crossed. And I bought myself this wall decal from eBay, which arrived in the post this morning. I'll post photos once it's up :)
I've been out a few times in the last week. I didn't get out on Thur because I was very tired from the clinic the previous day. But on Fri I was feeling much better so I joined mum and her friend having lunch out at a restaurant in town. I rarely eat out so that was nice :) It was an Italian restaurant though and I'm not allowed to eat shellfish or blue cheese and I don't like tomatoes (or tomato sauce) and pizza. So it was difficult finding something to eat on their menu! I ended up having a chicken and mushroom risotto, but instead of the tomato sauce I had a garlic sauce on it instead. After the meal we looked round the shops and I just bought one DVD (Lord of the Rings: The Fellowship of the Ring). I also called in at Barnardo's to pick up an application form, but they'd run out. So they took my address and will post me one out when they get some more. All the staff in the shop were lovely :) Once we got home I popped out to the surgery to pick up my new tablets and to the local shop to post back a rental DVD and withdraw some money from the cash machine.
On Saturday I was exhausted so didn't get out. But on Sun I felt better so had a lovely day. Mum didn't want a present for Mothers Day, but when I saw this pair of earrings I knew she'd love them so had to buy them for her. I had to let her know about them though so she could choose which colour she wanted. She went for purple like I thought she would. I ordered them from Folksy on Fri morning, they were dispatched later that day and they arrived on Sat so I could give them to mum on Sun! And she loves them :D
On Sun morning while dad was out swimming and picking Alf up from a friend's house where he'd spent the night, me and mum went to the local carboot sale to browse round. I love the return of the slightly warmer weather :) Mum was very happy with what she bought. I bought 6 DVDs at bargain prices, so they totalled just £4.50! Unfortunately I assumed they'd all be European DVDs but once I got home I discovered I was wrong - 3 of them were from different regions and so I can't watch them :( I can't unlock either of the DVD players in the house to play different region discs and my laptop wont either. The 3 DVDs that I bought which will play are Closer, Breakfast at Tiffany's and Lost in Translation. The 3 DVDs which wont play are Sense and Sensibility, Little Women and The Net. I'm not too bothered about Sense and Sensibility and Little Women, I'll just rent them at some point instead. But I was very disappointed about The Net because I was really looking forward to watching it as it stars Sandra Bullock. I tried to order a cheap copy from Amazon marketplace but that order was cancelled because they were out of stock. The only other copies available were a bit more expensive so I decided to hold off buying it until I've watched a rental copy. So I added it to my DVD rental list (as a high priority choice) on Sun and it was dispatched yesterday so I received it this morning :)
Mum and dad went to Chris and Sophie's for lunch on Sun but I stayed at home. Then when mum and dad got back us 3 went to visit my Nan. I should have guessed that we wouldn't be the only ones visiting her on Mother's Day afternoon, but I didn't give it a thought so was quite surprised when some other relatives were there. Dad's brother and his wife (who's wedding anniversary meal we went to last month) were there as well as their daughter (my cousin). I was a bit worried when we got there because there were more people than I expected, but it went ok. Because there were 7 of us there though there were often 2 or 3 conversations going at once, eek! My Nan was really pleased to see us all. And my uncle didn't mention my ME but was odd as usual :P His wife was lovely like she always is. And it was great to see my cousin as I'd not seen her for years. I think she might be in her 30s but I'm not really sure - I'm rubbish at guessing ages. I don't think many families would have such deep and lengthy conversations about marijuana like my family do, lol!
My Nan saw the cardiologist yesterday after months of waiting. The big relief is that she doesn't need an operation. Phew. Her heart problem are just related to her age. I don't know much more because my parents spoke to her on the phone, but she seemed very positive after seeing the cardiologist :)
And I had a nice time on Sun eve doing a jigsaw with my mum that she'd bought at the carboot sale that morning :)
On Sun eve I also discovered that Alf had pierced his own lip! I don't mind piercings but the idea of having one in your mouth is weird and self piercing - yuk! Alf said he did it himself because he didn't have enough money to pay to have it done. But he didn't get organised in advance with anything to put in it so by the time he got something from a friend at college yesterday the piercing had closed up. He'll probably attempt it again though. Mad!
I was surprised that I didn't feel exhausted yesterday after such a busy day on Sun. So me and mum went into town for a couple of hours to look round the shops (especially the charity shops). We also stopped for drinks in a coffee shop and called in the library where I borrowed a DVD (The Darjeeling Limited, mum's friend recommended when we saw her last Fri). I only bought one DVD (The Secret Garden) and I looked for some new slippers, because my current ones are falling apart, but with no success.
While we were in town yesterday afternoon afternoon I looked at the prices of some Playstations and Playstation 2s. I'm always surprised at how many PS1 and PS2 games there are in some charity shops and at the carboot sales we go to and how cheap they are. So I'd been thinking about picking up a second hand Playstation or Playstation 2 for a while but hadn't seen any at carboot sales recently. So I checked the prices of preowned ones in a couple of shops while we were out yesterday but didn't buy one as I wanted to check prices on the Internet first. Looking at them in shops helped me decide which model I wanted. I decided I wanted to get a Playstation 2 rather than a Playstation because then I would be able to play a wider range of games on it and I decided I wanted a slim model to fit better next to my Wii on the shelf under my TV. I had a look on the Internet last night and generally they were more expensive than those on the high street apart from on eBay. I tried to bid for a couple on eBay but I'm rubbish at bidding so either got outbid at the last minute or the price went higher than I was willing to pay. Then I found a perfect bundle available as a buy it now option, so I bought it. It will be delivered on Fri. Within the bundle I bought a silver (much nicer than the black) Playstation 2 slim, 2 controllers, all the relevant leads, a memory card and £10 games! And including postage that cost me £52 which I don't think is bad, especially as a new Playstation 2 without any games is selling for about £100. I only like the sound of 2 of the games (Sonic Heroes and Lord of the Rings: The Return of the King), so the other 8 I'm either going to sell to my older brother Chris or trade in at somewhere like Game.
I'm not going out today but am working through some jobs on my to-do list, such as updating my blog. This morning I received a lovely letter from Lizzy's husband's niece who lives in Burma :) And I also received the latest magazine from PINNT so I'll read that at some point.
Tomorrow we'll be waiting in for my Tac delivery and then that evening Claire is coming round for tea before we go to the cinema to see The Lovely Bones. On Thur afternoon I've got my Pathways to Work appt. I updated my CV the other day because I realised I'd got 3 more voluntary things (related to AYME) to add to it :) On Fri I'll be waiting in for my new Playstation 2 and then playing with it once it arrives :) No plans for Sat yet. And on Sun morn I'm hoping to browse round the local carboot sale again.
I received a letter through the door the other day with details of the next meeting of the teenage discussion group. The next meeting will be next Tue (23rd) and will be at the house of one of the leaders. Hopefully I'll feel well enough to go.
You may remember that shortly before Christmas I attended my first AYME meet-up at Lucy's house. I heard last night that she's planning another meet-up on April 10th, which I'm hoping to attend.
Towards the end of last week I discovered that our hard disc recorder had broken. It had been playing up for a while (it's quite old and has been very well used), but when I checked it I found it had only recorded one of five programmes I'd set it to record. I was able to watch the programmes on iPlayer though. I cleared lots off the hard disc and then did a test recording, which worked. But then when I set it to record manually and it told me it was recording it didn't actually record. Grrr. I've found it quite frustrating not being able to record things this week. I researched new HDRs and found one that looked good which also included a DVD recorder. I offered to go halves with my parents to buy it but dad said no because he thinks it's too expensive. And he thinks the old one will work again if we reformat the hard disc, but I'm doubtful. And even if it appears to work better I'm not sure I'll be able to trust it again. If we reformat it the whole hard drive will be wiped so we'll lose everything we've recorded on it. And if we replace it with a new one we'll also lose everything we've recorded. I've been watching through lots of the recorded programmes this week in preparation for losing them all. There are 2 recordings that I really don't want to lose though - Holly S's Battlefront programme (because it's something I was involved with) and an old Japanese film called Escapade in Japan (because it features parts of Japan I've been to, but it isn't available on DVD). Luckily Holly's Battlefront programme is repeated later this week (Fri morning at 4.45am if you missed it last time round) so I'm going to ask my friend Lizzy if she can record it to DVD for me. And I'll just have to lose the Japanese film, never mind.
So on TV this week I've watched the final episode of Syrian School, Film 2010, one part of Crufts 2010, a documentary called Too Poor for Posh School, a programme about Pink which featured an interview with her and some performances, Fri Night with Jonathan Ross (featuring Johnny Depp and Tim Burton), a fascinating documentary called The Pixar Story, Fri Night with Jonathan Ross (no Cheryl Cole as planned, but Charlotte Church and James Corden), an programe about Ellie Goulding which featured performances and a very short interview, an interesting programme about a railway journey through Japan, a documentary called Geisha Girl, the latest episode of Married Single Other (which was very sad), a BBC programme about kidney transplants called Diet or my Husband Dies and the music channels.
I've rewatched Finding Nemo this week and have also watched some new films. I loved Sunshine Cleaning and Erin Brockovich and would highly recommend them both. I also watched a weird film called The Virgin Suicides and started a film that I recorded from the TV many months ago called Framed, but I didn't want to finish it.
I've listened to some music as usual including Pixie Lott, Ellie Goulding and Marina and the Diamonds. I was happy to discover that Marina's next single will be I Am Not A Robot, which I think is a great song :)
And I've continued to play on my newest DS game, Yoshi's Island.
I've just remembered that Lou posted a meme on her blog recently (you can see it here), so I'll give it a go as I conclude this blog update.
Give me 5 foods you never want to eat:
~ Peanut butter - it just has the most disgusting texture, yuk.
~ Mince -it has a weird texture which I don't like.
~ Offal - the idea is just horrible.
And I'm stuck. There are other foods I don't like, but I don't want to say never to any of them as I might like them when I try them again in the future. I've only been eating for 3 years so I'm still discovering new foods and some take a few tries for me to decide I like.
Thursday, 11 March 2010
Clinic
Yesterday afternoon I attended a transition clinic at Hosp A. The roads were nice and clear so we arrived in plenty of time. While me and mum were sitting in the car in the car park we phoned dad to see if he was on his way yet. Dad thought my appt was at 2.30pm rather than 2pm, so he said he'd meet us at the clinic as soon as he could. Me and mum went to check in at the clinic named on my appt letter, but the receptionist couldn't find my notes! As we sat and waited for them to find my notes, Dr W (consultant from Hosp A)'s name was wiped off the board which said which doctors were in which rooms! Dad joined us and after I'd been waiting for 20mins I let the receptionist know, she was still looking for my notes. After 40mins I was told that we were in the wrong clinic! So we headed to the correct clinic in another area of the hospital and were then 40mins late. My consultants had been wondering what had happened to us! Because of all this confusion I never saw a nurse so was never weighed and surprisingly I wasn't asked for it in clinic either! And another thing that was missed was an examination. Hmmm.
There were lots of people in the consulting room. Dr G (my consultant from Hosp B) was the only one there from Hosp B as my dietician hadnt been able to make it. From Hosp A there was Dr W (my consultant), C (my dietician), S (a small bowel tx co-ordinator), M (a clinical nurse), Hosp A's main small bowel tx surgeon and a nearly qualified consultant. Plus me, mum and dad. So it was quite a crowded room! Dr W led the clinic. At first he asked me briefly what my main concerns were to revisit later in more detail, I gave him my tablet list and he summarised my surgical history to the surgeon. I asked Dr W why it was so long since my last clinic (he said he'd see me again in 3 months, but it was 8 months) and he said that he can't keep track of time very well, so sometimes he doesn't notice when he's not seen patients for a while. So he doesn't keep track of that but there must have been an administrative error somewhere. That didn't fill me with confidence!
Dr W said to the surgeon that it had taken me quite a while to get off enteral feeds. It's funny how hosps see things differently - that seemed a long time to the team at Hosp A, but isn't really a long time to the team at Hosp B. I told Dr W and the dietician about what's been happening with my enteral feeds and eating. The diectician wanted to know what my high calorie puddings were called but I couldn't remember the name of them so she assumed that they were something different to what they actually are. Never mind. Dr W was surprised I was on such a small quantity of high calorie supplements, he didn't understand why they'd not been stopped completely. So I just told him that my dietician from Hosp B wasn't happy for me to stop them yet. I mentioned my lack of hunger and thirst and apparently I'm unusual in not feeling them. No-one seemed to know whether I'll ever feel hunger and thirst or not.
Then we talked about my ME. Dr W has seen similar symptoms in other patients post small bowel tx so thinks it's related to that. He said that he thinks that labelling it as ME isn't helpful because it means I don't look into symptoms further, I just put them down to ME. So at the next clinic I'll give him list of my ME symptoms to see what he thinks. I'm glad he's willing to look into them further. But I like having a name for my symptoms, knowing I'm not alone with it and being able to access support. I didn't like Dr W saying Chronic Fatigue related to my tx because it's more than just fatigue. And he said that often small bowel tx patients have trouble sleeping and unrefreshing sleep. He thinks if I was getting more sleep then all my other ME symptoms would disappear. I don't think so.
We talked about my tummy pains. Dr W thinks he knows why I'm getting them! I can't remember what he called it but it can occur when the colon hasn't been in use or hasn't been used like it would normally be for a period of time. Then you get pain from small levels of distention caused by eating food that normal colons would have no trouble with. Apparently slight inflammation from my last scope results means nothing. Dr W prescribed 2 new tablets for me to try! I can't remember the name of one of them, but it should ease the spasms. It's a bit like the Mebeverine that I tried before and it didn't work for me, but this one often works when Mebeverine doesn't. I can take it up to 3 times a day, but have to work work out what are the best times for me to take it. And the second tablet he suggested was Amitriptyline to make the nerves in my colon less sensitive. I've been on this before post tx for anxiety and sleep probs but wasn't on it for long. I remember though that it was very difficult to stop taking as I experienced a lot of withdrawal symptoms so am a little bit nervous about that. Because it makes people drowsy you take it before bed and so it might help my sleep too. If either of the tablets help then hopefully after a couple of months I'll be able to stop taking them and the pains wont come back. It was suggested that I try both at once. That seems an odd idea to me because if I see an improvement in my tummy pains I wont know which one is helping. I took the prescription into the surgery yesterday evening, so hopefully I'll be able to pick the tablets up tomorrow or Mon. Fingers crossed that they work.
My last blood results were all normal so my bloods can now go back to 3 monthly. Therefore I didn't need them doing yesterday. The kidney tests I had done at my MOT in Dec were all completely normal. Apparently I was never meant to get a letter about those results, like Liver Direct said I would. And I told Dr W about trouble with my periods so he's going to set me up another appt to see the gynaecologist there.
Then we got to talking about transition and my concerns about it. Apparently Hosp A can't take over my care gradually because then mistakes can be made if each hosp thinks the other hosp is doing something. So all my care will have to be transferred at once. Apparently Hosp B will never completely let me go though. Dr G even had the cheek to point out that each time he has to admit me he has to fill lots of paperwork because I'm older. I've only been admitted once since I turned 18 (for my annual tests last Dec) and even then I didn't stay on the ward. And the last time I admitted before that was 17 months previously for my illeostomy reversal. So I'm not admitted a lot! It took a while to get them to understand my concerns about transition as both my consultants seemed to think that I was worried about leaving paediatric services and didn't want to leave the team at Hosp B who I'm attached too. That's not the problem, the problem is that I don't want to leave Hosp B and then get to know all about how Hosp A works when I have an emergency admission, I'd prefer to know how it all works in advance. It was decided that my care will be completely transferred at the start of June and until then I'll get to know the team at Hosp A better and we'll work out how everything will work once I'm under their care rather than the care of Hosp B. Until the start of June my care will still be under Hosp B. I was given lots of contact numbers and email addresses for the team at Hosp A so I know who to contact if I have any problems. It still remains to be seen how easy they are to contact though. The Hosp A small bowel tx team is much smaller than the small bowel tx team at Hosp B, but then they do have a lot less patients. My dietician from Hosp A (who seems very nice) is going to contact my dietician from Hosp B. And when I email either of them over the next 3 months I have to send the email to the other one too. I was optimistic about the psych from Hosp B helping me with CBT to help my ME, but she hasn't replied to my emails since Nov so I've only had one session with her so far. And now I'm leaving Hosp B it doesn't look like I'm going to have a chance to do any more CBT with her, which is a shame. We were in clinic for ages and there was loads of information to take in so it was very overwhelming and tiring.
After clinic we decided to have a chat with S (one of the small bowel tx co-ordinators) to make a transition plan. Mum wanted a cup of tea so we held this chat in the cafe. I'd never met S before yesterday as she'd been off on maternity leave. The last few times I'd met the other small bowel tx co-ordinator, H, who I wasn't very keen on. I liked S though. We had a good chat about films rather than talking about what we were supposed to be talking about. Hehe. We spoke a bit more about transition and how we could make me more confident in it. We decided that I'd email S with details of how everything (bloods, scopes, contact etc) works at the moment with Hosp B and then she'll be able to let me know how it'll work with Hosp A and look at any problems we'll need to overcome.
For example the small bowel tx clinics at Hosp A are always held on Tues but because mum works on Tues I'd have great difficulty getting to Hosp A. So we'll have to see if Dr W would be able to fit me into his nutrition clinic on Weds instead. When I have my scopes though they'll be on a Tues so we'll need to work out how I'll be able to get there then. I was quite surprised to discover that the team at Hosp A (esp Dr W's partner Dr M) weren't keen on the idea of me having scopes annually. All but one of their post tx patients aren't as far post tx as me (most are less than 2 years post) and they have scopes 4 monthly. The fact that most of their post tx patients aren't as far post tx as me is a bit worrying because it's made me realise just how little experience they have compared to Hosp B who have patients 10 years post tx. So S thought I'd have to have them 4 or 6 monthly, which I'm not keen on at all because each time it would involve being starved for a few days and probably an overnight stay. And I'm a bit scared about not being able to have them under a GA any more. Going from annual scopes to more frequent scopes would feel like a step backwards for me. So we'll have to see what happens there. We need to work out how my bloods will be handled etc too. And I need to talk to my GP about my Tacrolimus because at the moment I get it delivered to me at home by a healthcare company. But once I'm under Hosp A my GP will have to prescribe and supply it.
So I'm going to try to get a nice lengthy email written to S this week and dad will help me think of things to include too. I received an email from S yesterday evening letting me know that because her email address isn't an nhs.net email address, but is instead an nhs.uk (not sure exactly what that means), I shouldn't email her too much confidential info about myself. So she's also given me her postal address at Hosp A. So now I'm not sure what I can include in emails and what I can't (sending stuff in the post isn't really a preferrable option as it takes so long and is much less convenient than emails), so I need to find that out. I'm now feeling a bit more confident about the transition but still quite nervous as June really isn't that far away. Hosp A also don't have nearly as much experience with small bowel txs as Hosp B which is a bit worrying.
There were lots of people in the consulting room. Dr G (my consultant from Hosp B) was the only one there from Hosp B as my dietician hadnt been able to make it. From Hosp A there was Dr W (my consultant), C (my dietician), S (a small bowel tx co-ordinator), M (a clinical nurse), Hosp A's main small bowel tx surgeon and a nearly qualified consultant. Plus me, mum and dad. So it was quite a crowded room! Dr W led the clinic. At first he asked me briefly what my main concerns were to revisit later in more detail, I gave him my tablet list and he summarised my surgical history to the surgeon. I asked Dr W why it was so long since my last clinic (he said he'd see me again in 3 months, but it was 8 months) and he said that he can't keep track of time very well, so sometimes he doesn't notice when he's not seen patients for a while. So he doesn't keep track of that but there must have been an administrative error somewhere. That didn't fill me with confidence!
Dr W said to the surgeon that it had taken me quite a while to get off enteral feeds. It's funny how hosps see things differently - that seemed a long time to the team at Hosp A, but isn't really a long time to the team at Hosp B. I told Dr W and the dietician about what's been happening with my enteral feeds and eating. The diectician wanted to know what my high calorie puddings were called but I couldn't remember the name of them so she assumed that they were something different to what they actually are. Never mind. Dr W was surprised I was on such a small quantity of high calorie supplements, he didn't understand why they'd not been stopped completely. So I just told him that my dietician from Hosp B wasn't happy for me to stop them yet. I mentioned my lack of hunger and thirst and apparently I'm unusual in not feeling them. No-one seemed to know whether I'll ever feel hunger and thirst or not.
Then we talked about my ME. Dr W has seen similar symptoms in other patients post small bowel tx so thinks it's related to that. He said that he thinks that labelling it as ME isn't helpful because it means I don't look into symptoms further, I just put them down to ME. So at the next clinic I'll give him list of my ME symptoms to see what he thinks. I'm glad he's willing to look into them further. But I like having a name for my symptoms, knowing I'm not alone with it and being able to access support. I didn't like Dr W saying Chronic Fatigue related to my tx because it's more than just fatigue. And he said that often small bowel tx patients have trouble sleeping and unrefreshing sleep. He thinks if I was getting more sleep then all my other ME symptoms would disappear. I don't think so.
We talked about my tummy pains. Dr W thinks he knows why I'm getting them! I can't remember what he called it but it can occur when the colon hasn't been in use or hasn't been used like it would normally be for a period of time. Then you get pain from small levels of distention caused by eating food that normal colons would have no trouble with. Apparently slight inflammation from my last scope results means nothing. Dr W prescribed 2 new tablets for me to try! I can't remember the name of one of them, but it should ease the spasms. It's a bit like the Mebeverine that I tried before and it didn't work for me, but this one often works when Mebeverine doesn't. I can take it up to 3 times a day, but have to work work out what are the best times for me to take it. And the second tablet he suggested was Amitriptyline to make the nerves in my colon less sensitive. I've been on this before post tx for anxiety and sleep probs but wasn't on it for long. I remember though that it was very difficult to stop taking as I experienced a lot of withdrawal symptoms so am a little bit nervous about that. Because it makes people drowsy you take it before bed and so it might help my sleep too. If either of the tablets help then hopefully after a couple of months I'll be able to stop taking them and the pains wont come back. It was suggested that I try both at once. That seems an odd idea to me because if I see an improvement in my tummy pains I wont know which one is helping. I took the prescription into the surgery yesterday evening, so hopefully I'll be able to pick the tablets up tomorrow or Mon. Fingers crossed that they work.
My last blood results were all normal so my bloods can now go back to 3 monthly. Therefore I didn't need them doing yesterday. The kidney tests I had done at my MOT in Dec were all completely normal. Apparently I was never meant to get a letter about those results, like Liver Direct said I would. And I told Dr W about trouble with my periods so he's going to set me up another appt to see the gynaecologist there.
Then we got to talking about transition and my concerns about it. Apparently Hosp A can't take over my care gradually because then mistakes can be made if each hosp thinks the other hosp is doing something. So all my care will have to be transferred at once. Apparently Hosp B will never completely let me go though. Dr G even had the cheek to point out that each time he has to admit me he has to fill lots of paperwork because I'm older. I've only been admitted once since I turned 18 (for my annual tests last Dec) and even then I didn't stay on the ward. And the last time I admitted before that was 17 months previously for my illeostomy reversal. So I'm not admitted a lot! It took a while to get them to understand my concerns about transition as both my consultants seemed to think that I was worried about leaving paediatric services and didn't want to leave the team at Hosp B who I'm attached too. That's not the problem, the problem is that I don't want to leave Hosp B and then get to know all about how Hosp A works when I have an emergency admission, I'd prefer to know how it all works in advance. It was decided that my care will be completely transferred at the start of June and until then I'll get to know the team at Hosp A better and we'll work out how everything will work once I'm under their care rather than the care of Hosp B. Until the start of June my care will still be under Hosp B. I was given lots of contact numbers and email addresses for the team at Hosp A so I know who to contact if I have any problems. It still remains to be seen how easy they are to contact though. The Hosp A small bowel tx team is much smaller than the small bowel tx team at Hosp B, but then they do have a lot less patients. My dietician from Hosp A (who seems very nice) is going to contact my dietician from Hosp B. And when I email either of them over the next 3 months I have to send the email to the other one too. I was optimistic about the psych from Hosp B helping me with CBT to help my ME, but she hasn't replied to my emails since Nov so I've only had one session with her so far. And now I'm leaving Hosp B it doesn't look like I'm going to have a chance to do any more CBT with her, which is a shame. We were in clinic for ages and there was loads of information to take in so it was very overwhelming and tiring.
After clinic we decided to have a chat with S (one of the small bowel tx co-ordinators) to make a transition plan. Mum wanted a cup of tea so we held this chat in the cafe. I'd never met S before yesterday as she'd been off on maternity leave. The last few times I'd met the other small bowel tx co-ordinator, H, who I wasn't very keen on. I liked S though. We had a good chat about films rather than talking about what we were supposed to be talking about. Hehe. We spoke a bit more about transition and how we could make me more confident in it. We decided that I'd email S with details of how everything (bloods, scopes, contact etc) works at the moment with Hosp B and then she'll be able to let me know how it'll work with Hosp A and look at any problems we'll need to overcome.
For example the small bowel tx clinics at Hosp A are always held on Tues but because mum works on Tues I'd have great difficulty getting to Hosp A. So we'll have to see if Dr W would be able to fit me into his nutrition clinic on Weds instead. When I have my scopes though they'll be on a Tues so we'll need to work out how I'll be able to get there then. I was quite surprised to discover that the team at Hosp A (esp Dr W's partner Dr M) weren't keen on the idea of me having scopes annually. All but one of their post tx patients aren't as far post tx as me (most are less than 2 years post) and they have scopes 4 monthly. The fact that most of their post tx patients aren't as far post tx as me is a bit worrying because it's made me realise just how little experience they have compared to Hosp B who have patients 10 years post tx. So S thought I'd have to have them 4 or 6 monthly, which I'm not keen on at all because each time it would involve being starved for a few days and probably an overnight stay. And I'm a bit scared about not being able to have them under a GA any more. Going from annual scopes to more frequent scopes would feel like a step backwards for me. So we'll have to see what happens there. We need to work out how my bloods will be handled etc too. And I need to talk to my GP about my Tacrolimus because at the moment I get it delivered to me at home by a healthcare company. But once I'm under Hosp A my GP will have to prescribe and supply it.
So I'm going to try to get a nice lengthy email written to S this week and dad will help me think of things to include too. I received an email from S yesterday evening letting me know that because her email address isn't an nhs.net email address, but is instead an nhs.uk (not sure exactly what that means), I shouldn't email her too much confidential info about myself. So she's also given me her postal address at Hosp A. So now I'm not sure what I can include in emails and what I can't (sending stuff in the post isn't really a preferrable option as it takes so long and is much less convenient than emails), so I need to find that out. I'm now feeling a bit more confident about the transition but still quite nervous as June really isn't that far away. Hosp A also don't have nearly as much experience with small bowel txs as Hosp B which is a bit worrying.
Rachy gets her call
Last night Rachael received a call for transplant and after a long and anxious wait to find out the quality of the lungs she went into theatre this evening to receive her new lungs. She's still in theatre now and it's likely that there wont be any news for a little while until she's out of theatre and into ICU. I was so pleased to hear that she's received her transplant at last and hope all goes well for her. Rachy, her family and the donor family are in my thoughts. Rachy knew she hadn't got much time left without a transplant and did this amazing item on her local news just a couple of days ago. Any updates will be posted to her blog which you can visit by clicking on her name in the first sentence. They may be posted as new blog posts in the future but for now just this blog post is being edited with updates added.
You can make a difference by signing the organ donor register here.
You can make a difference by signing the organ donor register here.
Tuesday, 9 March 2010
Mum's birthday, cinema and phone calls
I've decided to update my blog today because I've got my joint clinic at Hosp A tomorrow and I might have quite a bit to write about that, so that can start a new update.
I've just realised that 2 years ago I was in Florida with my family :D You can read more about it here.
Sun was my mum's birthday. When I woke up she was out, she'd gone for a walk round the village with a friend to deliver some birthday cards as she knows 3 other people with the same birthday as her in the village! :P And then they walked to the garden centre in the next village for a cup of tea. While mum was out Nan phoned up to wish her happy birthday so I had a chat to her on the phone and said we'd try to visit her soon.
When mum got home she finished opening her cards and opened her presents. I gave her Paint Your Wagon on DVD because that's a film she loves and I also bought her the complete collection of Dinnerladies. She was very pleased with them :) My Nan gave her some money and Alf gave her an IOU for a ball of wool. Dad bought her some mini pompoms to add to her knitted creations, a glowstick bracelet and some bubble mixture to blow bubbles with! :P And mum got a shirt from one friend and some chocolates from another friend.
That afternoon I watched a surprisingly good film called No Reservations and the extra features on the DVD. Then Chris and Sophie came round to see mum on her birthday. They bought her a bunch of daffodils and stayed and chatted for a little while.
On Sun eve dad took mum out for a meal in the city. They both had a nice time :) While they were out Alf told me that he's started smoking again :( While mum and dad were out I attempted to make myself a really simple meal - microwavable rice plus a sauce. I didn't realise how strong the sauce was though so added a bit too much to my rice. Whoops :P I watched Simon Cowell Uncut: Piers Morgan's Life Stories which I found very interesting.
While I was surfing the Internet I found a great video on Youtube of Sandra Bullock's acceptance speech for the Razzie she'd won for worst actress in All About Steve. She's so funny, you can watch it here if you're interested. I forgot to listen to the chart so I checked the result on the Internet. I was really pleased to see that Ellie Goulding's debut album Lights was number 1 in the official album chart and had knocked Lady Gaga's album off the top spot! Wow, what an achievement! :D And her single Starry Eyed was still number 4 in the singles chart. I also found some interesting interviews about Alice in Wonderland. If you're interested you can read Tim Burton's interview here, Helena Bonham Carter's interview here and Mia Wasikowska's interview here.
Yesterday would have been the 12th birthday of a girl I met in Hosp B called Alicia. You can read more about her at the end of this blog update.
Yesterday morning I really struggled to get up and felt very sleepy. I felt more tired than usual all day, which is probably at least partly due to my nocturnalism.
I received both of my monthly magazines - Focus and Official Nintendo Magazine (ONM) - in the post yesterday morning. I struggle to read Focus at the moment so have cancelled my subscription but because the direct debit payments were 3 monthly I've had a few issues since I cancelled my subscription. I can read ONM though so have enjoyed reading that yesterday and today :)
Yesterday I found the winners of the Oscars online because I don't have Sky so couldn't watch it on TV. You can see the list of nominees and winners here. I've not seen The Hurt Locker which won lots of awards, the trailers didn't appeal to me at all. I'm glad Sandra Bullock won best actress, I think she's great. I've not seen The Blind Side yet but will go to see it as soon as it's released in UK cinemas later this month. I was glad Mo'Nique won best supporting acting for Precious and that it won best adapted screen play because I thought it was an amazing film. And I think Up deserved to win best original score but although it's a great film I was a bit disappointed that it beat Coraline to win best animation like it also did at the BAFTAs.
Yesterday afternoon I rang A, the odd lady from the village who runs the teenage discussion group. On Fri dad had phoned her to give my apologies for missing the meeting that night and she asked me to phone her back when I felt up to it. So I did. Last Fri her and the other leader B were the only ones at the discussion group, no-one else turned up! So she wants to change the evening from Fri to another night. I said that I could make any night but mentioned that the others might struggle with a different night if they've got homework. So she's going to ask them too. I have a feeling that no matter which evening she changes it too, people will make excuses not to attend :P
Yesterday evening me, Claire, mum and dad went to the cinema to see Alice in Wonderland. We'd pre-booked our tickets but got to the cinema about 20mins early to queue and were quite near the front of the queue. When we were let into the cinema we got a good choice of seats but then more and more people kept coming in and most of the seats were taken. There seemed to be loads of adverts and trailers but we enjoyed watching a 3D Doctor Who trailer and a trailer for Toy Story 3, which I can't wait to see. Then eventually Alice in Wonderland started. It was fantastic, I really couldn't fault it and I want to see it again now :D The story was great, the animation was fantastic, the acting was brilliant and it was very absorbing :) We all really enjoyed it :) Alf has gone to see it tonight with some friends.
Rachy was on her local BBC news yesterday. You can read more about it and see the video here. Please send the link to your friends and family to raise awareness of organ donation. Rachy is such an inspiration. Thanks.
Yesterday evening a friend gave me a link to watch a programme on iPlayer that talked about organ donation. You can see it here and organ donation is the first issue that they discuss. It certainly made me think, I'd never really stopped to consider the condition of donated organs before as I'd just assumed that doctors would make that decision.
When I was chatting to a friend on Facebook last night he mentioned that he likes music by an Australian singer called Lenka who I'd never heard of. So I had a listen to some of her music including The Show and Trouble is a Friend on Spotify and thought it was quite good, if a bit repetitive.
This morning I weighed myself and found that I'd lost a bit of weight. I'm not too worried because I'm still at a healthy weight, but I emailed my dietician to let her know. I am puzzled though because I ate almost the same this last week as I did the previous week, but the previous week I gained 0.8kg whereas this week I lost 0.8kg! Weird. My dietician replied this evening and said not to worry too much about small fluctuations in my weight. I only need to worry if it continually decreases. My weight this morning was 52.1kg and my target weight is 52kg so that's fine. She's happy for me now to weigh myself fornightly rather than weekly. And my dietician also apologised again for not being able to attend tomorrow's clinic, but she's completely happy with my weight and eating at the moment.
In the post this morning I received my copy of Holly C's Give and Let Live photography book. It looks fantastic, well done Holly :D You can find out more about it by clicking on Holly's name to visit her photography blog. And I received the new DS game I bought - Yoshi's Island DS. I've played on that a bit today and I like it :) This morning I also popped round to the local shop to buy the new Radio Times.
When I saw my Pathways to Work advisor last time we discussed me trying to volunteering in a local charity shop. I expressed my concerns about the unpredictability of my health meaning I might have to cancel at short notice sometimes and said that I didn't know how charity shops would be about that. So my advisor suggested that we both phoned some local charity shops and asked. We made a list of all the ones in that town and said she'd phone them. We also made a list of all the charity shops in another local town and she asked me to phone them. There were 7 charity shops on my list to start with, but one has closed down and another I decided I didn't want to work in, so that left 5. I was dreading phoning them as I'm not very comfortable using the phone, so kept putting it off. I decided yesterday that I'd do it today but wasn't sure if I'd be brave enough. Silly I know but I do have real difficulty making phone calls. But I went for it.
The first charity shop I phoned was a cancer research one and when I enquired about volunteering they said that they currently had over 50 volunteers so were well covered. The next shop I phoned was Barnardo's which is a bit smaller. I spoke to a lovely woman and explained the restrictions with my health. She suggested that I could volunteer sorting stuff out in the back rather than serving customers out the front and that way when I feel up to it I could phone in and see if they have anything they need sorting rather than trying to work a regular shift once a week. My mum is going into that town on Fri so will pick me up an application form then. I'm not going to bother ringing the remaining 3 charity shops. I'm quite looking forward to trying some volunteering :)
I then received an unexpected phone call today from my consultant from Hosp B in advance of tomorrow's clinic. He asked me if I was happy for my transition to be completed tomorrow and for my care to be completely handed over from Hosp B to Hosp A. My response was definitely not! I can't believe he even thought that I was ready for that and was happy to let me go already. It was only 6 months ago he told me he wasn't happy for me to complete the transition yet and we've not had any developments since then that I know of, so hearing that today was completely unexpected and really shocked me. On the phone I briefly listed the reasons why I'm not confident to complete my transition yet. He said that was fine and I wont be made to complete the transition until I'm confident with it. He said we can discuss my concerns further tomorrow and see if we can come up with some ways for me to improve my confidence in the transition. I'd trust Hosp B with my life but haven't really seen enough of Hosp A yet to be able to trust them and have confidence in them. My dad was really shocked too that I'd been asked to complete the transition tomorrow, he completely agrees with my decision not to and said he wouldn't be happy for me to. Dad is hoping to be able to get time off work to attend tomorrow's clinic with me and mum which I'm very happy about. We wont know for certain whether he will be able to come or not til tomorrow morning though. I'm quite nervous about tomorrow for a few reasons. But I'll be assertive and explain why I'm not ready to complete my transition yet. I've also got a list of things I want to discuss and the other major one is my tummy pains because I want some answers and treatment for them now they've been causing me so much trouble for over 18 months.
This afternoon I also received a phone call from the physio department at Hosp H. I've been given an appt to see a physio one-to-one towards the end of next month. Hopefully I'll find that helpful.
I've been watching the music channels quite a bit this afternoon. I love Shakira's new single, Gypsy, but wasn't very keen on the video. This afternoon I've had the theme tune to Alice in Wonderland, which is called Alice and is sung by Avril Lavigne, in my head. Songs seem to get stuck in my head very easily - all of yesterday I had Once by Diana Vickers stuck in my head (you can see the video if you scroll down this page).
This evening me and mum watched the 3rd episode of Married Single Other together which we recorded last night when we were out. Our hard disc recorder has been playing up and annoying me for the last few days, grrr! I started watching the first episode of Wonders of the Solar System with my parents but got bored of it very quickly :P At the moment I'm watching One Born Every Minute.
I've just realised that 2 years ago I was in Florida with my family :D You can read more about it here.
Sun was my mum's birthday. When I woke up she was out, she'd gone for a walk round the village with a friend to deliver some birthday cards as she knows 3 other people with the same birthday as her in the village! :P And then they walked to the garden centre in the next village for a cup of tea. While mum was out Nan phoned up to wish her happy birthday so I had a chat to her on the phone and said we'd try to visit her soon.
When mum got home she finished opening her cards and opened her presents. I gave her Paint Your Wagon on DVD because that's a film she loves and I also bought her the complete collection of Dinnerladies. She was very pleased with them :) My Nan gave her some money and Alf gave her an IOU for a ball of wool. Dad bought her some mini pompoms to add to her knitted creations, a glowstick bracelet and some bubble mixture to blow bubbles with! :P And mum got a shirt from one friend and some chocolates from another friend.
That afternoon I watched a surprisingly good film called No Reservations and the extra features on the DVD. Then Chris and Sophie came round to see mum on her birthday. They bought her a bunch of daffodils and stayed and chatted for a little while.
On Sun eve dad took mum out for a meal in the city. They both had a nice time :) While they were out Alf told me that he's started smoking again :( While mum and dad were out I attempted to make myself a really simple meal - microwavable rice plus a sauce. I didn't realise how strong the sauce was though so added a bit too much to my rice. Whoops :P I watched Simon Cowell Uncut: Piers Morgan's Life Stories which I found very interesting.
While I was surfing the Internet I found a great video on Youtube of Sandra Bullock's acceptance speech for the Razzie she'd won for worst actress in All About Steve. She's so funny, you can watch it here if you're interested. I forgot to listen to the chart so I checked the result on the Internet. I was really pleased to see that Ellie Goulding's debut album Lights was number 1 in the official album chart and had knocked Lady Gaga's album off the top spot! Wow, what an achievement! :D And her single Starry Eyed was still number 4 in the singles chart. I also found some interesting interviews about Alice in Wonderland. If you're interested you can read Tim Burton's interview here, Helena Bonham Carter's interview here and Mia Wasikowska's interview here.
Yesterday would have been the 12th birthday of a girl I met in Hosp B called Alicia. You can read more about her at the end of this blog update.
Yesterday morning I really struggled to get up and felt very sleepy. I felt more tired than usual all day, which is probably at least partly due to my nocturnalism.
I received both of my monthly magazines - Focus and Official Nintendo Magazine (ONM) - in the post yesterday morning. I struggle to read Focus at the moment so have cancelled my subscription but because the direct debit payments were 3 monthly I've had a few issues since I cancelled my subscription. I can read ONM though so have enjoyed reading that yesterday and today :)
Yesterday I found the winners of the Oscars online because I don't have Sky so couldn't watch it on TV. You can see the list of nominees and winners here. I've not seen The Hurt Locker which won lots of awards, the trailers didn't appeal to me at all. I'm glad Sandra Bullock won best actress, I think she's great. I've not seen The Blind Side yet but will go to see it as soon as it's released in UK cinemas later this month. I was glad Mo'Nique won best supporting acting for Precious and that it won best adapted screen play because I thought it was an amazing film. And I think Up deserved to win best original score but although it's a great film I was a bit disappointed that it beat Coraline to win best animation like it also did at the BAFTAs.
Yesterday afternoon I rang A, the odd lady from the village who runs the teenage discussion group. On Fri dad had phoned her to give my apologies for missing the meeting that night and she asked me to phone her back when I felt up to it. So I did. Last Fri her and the other leader B were the only ones at the discussion group, no-one else turned up! So she wants to change the evening from Fri to another night. I said that I could make any night but mentioned that the others might struggle with a different night if they've got homework. So she's going to ask them too. I have a feeling that no matter which evening she changes it too, people will make excuses not to attend :P
Yesterday evening me, Claire, mum and dad went to the cinema to see Alice in Wonderland. We'd pre-booked our tickets but got to the cinema about 20mins early to queue and were quite near the front of the queue. When we were let into the cinema we got a good choice of seats but then more and more people kept coming in and most of the seats were taken. There seemed to be loads of adverts and trailers but we enjoyed watching a 3D Doctor Who trailer and a trailer for Toy Story 3, which I can't wait to see. Then eventually Alice in Wonderland started. It was fantastic, I really couldn't fault it and I want to see it again now :D The story was great, the animation was fantastic, the acting was brilliant and it was very absorbing :) We all really enjoyed it :) Alf has gone to see it tonight with some friends.
Rachy was on her local BBC news yesterday. You can read more about it and see the video here. Please send the link to your friends and family to raise awareness of organ donation. Rachy is such an inspiration. Thanks.
Yesterday evening a friend gave me a link to watch a programme on iPlayer that talked about organ donation. You can see it here and organ donation is the first issue that they discuss. It certainly made me think, I'd never really stopped to consider the condition of donated organs before as I'd just assumed that doctors would make that decision.
When I was chatting to a friend on Facebook last night he mentioned that he likes music by an Australian singer called Lenka who I'd never heard of. So I had a listen to some of her music including The Show and Trouble is a Friend on Spotify and thought it was quite good, if a bit repetitive.
This morning I weighed myself and found that I'd lost a bit of weight. I'm not too worried because I'm still at a healthy weight, but I emailed my dietician to let her know. I am puzzled though because I ate almost the same this last week as I did the previous week, but the previous week I gained 0.8kg whereas this week I lost 0.8kg! Weird. My dietician replied this evening and said not to worry too much about small fluctuations in my weight. I only need to worry if it continually decreases. My weight this morning was 52.1kg and my target weight is 52kg so that's fine. She's happy for me now to weigh myself fornightly rather than weekly. And my dietician also apologised again for not being able to attend tomorrow's clinic, but she's completely happy with my weight and eating at the moment.
In the post this morning I received my copy of Holly C's Give and Let Live photography book. It looks fantastic, well done Holly :D You can find out more about it by clicking on Holly's name to visit her photography blog. And I received the new DS game I bought - Yoshi's Island DS. I've played on that a bit today and I like it :) This morning I also popped round to the local shop to buy the new Radio Times.
When I saw my Pathways to Work advisor last time we discussed me trying to volunteering in a local charity shop. I expressed my concerns about the unpredictability of my health meaning I might have to cancel at short notice sometimes and said that I didn't know how charity shops would be about that. So my advisor suggested that we both phoned some local charity shops and asked. We made a list of all the ones in that town and said she'd phone them. We also made a list of all the charity shops in another local town and she asked me to phone them. There were 7 charity shops on my list to start with, but one has closed down and another I decided I didn't want to work in, so that left 5. I was dreading phoning them as I'm not very comfortable using the phone, so kept putting it off. I decided yesterday that I'd do it today but wasn't sure if I'd be brave enough. Silly I know but I do have real difficulty making phone calls. But I went for it.
The first charity shop I phoned was a cancer research one and when I enquired about volunteering they said that they currently had over 50 volunteers so were well covered. The next shop I phoned was Barnardo's which is a bit smaller. I spoke to a lovely woman and explained the restrictions with my health. She suggested that I could volunteer sorting stuff out in the back rather than serving customers out the front and that way when I feel up to it I could phone in and see if they have anything they need sorting rather than trying to work a regular shift once a week. My mum is going into that town on Fri so will pick me up an application form then. I'm not going to bother ringing the remaining 3 charity shops. I'm quite looking forward to trying some volunteering :)
I then received an unexpected phone call today from my consultant from Hosp B in advance of tomorrow's clinic. He asked me if I was happy for my transition to be completed tomorrow and for my care to be completely handed over from Hosp B to Hosp A. My response was definitely not! I can't believe he even thought that I was ready for that and was happy to let me go already. It was only 6 months ago he told me he wasn't happy for me to complete the transition yet and we've not had any developments since then that I know of, so hearing that today was completely unexpected and really shocked me. On the phone I briefly listed the reasons why I'm not confident to complete my transition yet. He said that was fine and I wont be made to complete the transition until I'm confident with it. He said we can discuss my concerns further tomorrow and see if we can come up with some ways for me to improve my confidence in the transition. I'd trust Hosp B with my life but haven't really seen enough of Hosp A yet to be able to trust them and have confidence in them. My dad was really shocked too that I'd been asked to complete the transition tomorrow, he completely agrees with my decision not to and said he wouldn't be happy for me to. Dad is hoping to be able to get time off work to attend tomorrow's clinic with me and mum which I'm very happy about. We wont know for certain whether he will be able to come or not til tomorrow morning though. I'm quite nervous about tomorrow for a few reasons. But I'll be assertive and explain why I'm not ready to complete my transition yet. I've also got a list of things I want to discuss and the other major one is my tummy pains because I want some answers and treatment for them now they've been causing me so much trouble for over 18 months.
This afternoon I also received a phone call from the physio department at Hosp H. I've been given an appt to see a physio one-to-one towards the end of next month. Hopefully I'll find that helpful.
I've been watching the music channels quite a bit this afternoon. I love Shakira's new single, Gypsy, but wasn't very keen on the video. This afternoon I've had the theme tune to Alice in Wonderland, which is called Alice and is sung by Avril Lavigne, in my head. Songs seem to get stuck in my head very easily - all of yesterday I had Once by Diana Vickers stuck in my head (you can see the video if you scroll down this page).
This evening me and mum watched the 3rd episode of Married Single Other together which we recorded last night when we were out. Our hard disc recorder has been playing up and annoying me for the last few days, grrr! I started watching the first episode of Wonders of the Solar System with my parents but got bored of it very quickly :P At the moment I'm watching One Born Every Minute.
Sunday, 7 March 2010
Hospital Meme
I've stolen this meme from Emma, thanks.
HOSPITAL:
1. When did you first go into hospital?
Well I was born in hospital, but after that my first admission to hospital was when I had an intersucception of my small intestine (where it scoped in on itself so the blood supply was cut off and a large part of my small intestine died) at sixth months old. That time I was in hospital for about 6 months as it involved me being set up on TPN (IV feeding directly into my heart) because I hadn't got enough small intestine left to absorb vital nutrients from food.
2. What long term diseases/illnesses did you have/have you got?
My intersucception resulted in short gut syndrome and the treatment for that (TPN) led to me developing liver disease, which then led to my multi-organ transplant. I also have psoriasis (which I've had since I was about 6 and I'll probably have all my life), an ovarian cyst (which I've had for 2 years now) and ME (which I've had for just over 18 months so far).
3. How many times have you been in an operating theatre?
I got to 50 and then gave up counting, so more than 50 times so far.
4. Favourite thing to do when passing time in hospital?
I used to love reading novels to pass the time, but can't do that at the moment. So sometimes I do a crossword with my mum, play on my DSi or listen to my iPod.
5. How many outpatients appointments have you had?
Too many to count.
6. Worst thing about going into hospital?
Being cooped up in a cubicle/on the ward/inside the hospital and this is much worse if you're in isolation. Being unable to communicate with the outside world due to having no access to the Internet.
EYES:
1. Do you wear glasses?
Yes, I'm very short sighted.
2. If so, when did you start wearing glasses?
When I was 3! When I walked out of the opticians with my first pair of glasses mum tells me that I pointed at the sky and said "I never knew clouds looked like that" as I'd never been able to see them before. And before I got my glasses I would never go down the slide in parks but no-one knew why. After I got my glasses I was happy to go down them as before I was too scared because I couldn't see the bottom!
3. Can you read without your glasses?
No way.
No way.
4. How often do you get your eyes tested?
Annually.
5. Worst thing about an eye test?
I don't mind actual eye tests, but don't like finding out that my eyesight has deteriorated even more.
DENTAL:
1. Have you ever had braces?
Yes, 3 times. Once at primary school and once at secondary school I had removable braces, but they never helped. Now I've got fitted braces that I've had for a year so far.
2. Did you ever cry at the dentist when you were young?
When I was younger and was told that I needed a baby tooth extracting because it wouldn't fall out on it's own. I put that off for many years though and when I finally had to have it extracted (before my transplant because it would pose an infection risk afterwards) it went fine. And I have to admit that I cried at the orthodontist last summer when I had 4 teeth extracted because I was scared and then the injections were really painful.
3. Eye test or dental checkup?
Eye test.
4. Any dental treatment?
One baby tooth removed, 4 adult teeth removed, no fillings, 2 removable braces, 1 set (top and bottom) of fitted braces.
5. Worst part about visiting the dentist?
When the chair goes back I always feel like I'm going to fall off. And I hate the pain of injections. And in the past I've had horrible dentists and orthodontists, in fact my current orthodontist is very rude.
RANDOM:
1. How often do you have a blood test?
It depends. When I'm in hospital I usually have them daily, but when I'm at home and things are going really well I have them 3 monthly. At the moment they're fortnightly as my Tac level isn't quite right and my LFTs were raised a few months ago.
2. Is there anything you like about going to the dentist?
I don't hate it but I don't really like it either. My current dentist is lovely though :) And although I don't like my braces I really hope that the result will help my eating.
3. Name a thing you do when your nervous in any medical situation?
Pick my lips.
4. Have you ever gone under General Anaesthetic by a mask?
When I was little but after that I used to have nightmares about being put to sleep that way.
5. Have you ever gone under General Anesthetist by injection?
Since I've been old enough to have a say in it I've always had it done via injection rather than the mask. And I have a favourite anaesthetic too :)
Saturday, 6 March 2010
A rough week
Sorry for leaving it so long to update and sorry in advance for the length of this :P If you've not yet read my update about the Mika concert last Sun then you can see it here. I've had quite a rough week with my health this week. I think it's just after the concert on Sun but I've never felt this bad for so long after doing something before, so it's frustrating. I've been more exhausted than usual, my headaches have been more frequent and painful, my legs have been heavier than usual and a bit sore too and my tummy pains have been more severe and rather than coming and going like they usually do I had them for about 3 days without a break earlier in the week. Sorry if this is too much information, but The Pill I'm on usually means I don't have periods but for some reason I've had a heavy one this week. So I'm not sure what symptoms are related to that. I'm also still very nocturnal. Luckily I've not had to cancel many plans but I don't think that going out most days this week has helped my health. I've mostly managed to keep my spirits up despite this but did feel very down last night after I was too unwell to make it out to the second meeting of the teenage discussion group in the village. But I soon felt better after speaking to some lovely friends on the Internet and watching a Mika DVD :)
Since mid-week my hands have been really dry and quite sore around my knuckles. I've had this before but I can't work out what causes it. I've wondered if it's triggered by some soaps I'm not used to and this time it seemed to come on after I'd been out and that day I did wash my hands in some public toilets, but I'm not sure.
On Tue I weighed myself as usual and found I'd put on 0.8kg :) Generally I'm finding eating more manageable at the moment but sometimes I still struggle with meals. My dietician was very impressed with my weight, but said to continue with the high calorie puddings for now. I don't really want to put on any more weight though. She wont be able to make the joint clinic next Wed, which is disappointing as she seems to be the one who has listened to me most about my tummy pains and understands how much trouble they're causing me, so I'd hoped that she'd be able to get my consultants to take me seriously. My dietician isn't worried about having to miss the clinic though because my eating and weight is on track. I'm quite nervous about the clinic next week because from past experience I'm not expecting to make any progress with my tummy pains. But we'll see. Mum is taking me to the clinic and dad might be coming too but wont know til Mon whether he can get the day off work or not.
This week I also emailed the psychologist from Hosp B. I saw her last Nov to start CBT in the hope that it would help my ME. She said we'd continue the work via email but would plan more appts too. I emailed her after the last appt in Nov to try to arrange a follow up appt and then again in Dec with some CBT homework she'd asked me to do, but I didn't receive any replies. So I emailed her again this week to see if she's still happy to do CBT with me. If I don't hear by next Wed I'll mention the lack of contact to my consultants.
On Wed I received a phone call from the physio dept at Hosp H, they said that they'd received a referral letter from Hosp A. The lady I spoke to asked me to join a weekly conditioning class?! I explained that I'd been expecting to see a physio one-to-one so she said she'd find out more and phone me back. I feel seeing a physio one-to-one would potentially be more beneficial for me because that way I would be able to explain about having to be careful not to overdo it etc because of having ME. So hopefully I'll hear back from them soon. I have no idea what the referral from Hosp A to Hosp H will have said and whether it will even have mentioned that I have ME! I'll also mention the physio problems at the joint clinic.
On Thur 4th it would have been Codie's 5th birthday if she was still alive. You can read a post I made in her memory here and see a photo here.
Since I was very young I've been a member of an organisation called PINNT which stands for Patients on Intravenous and Naso gastric Nutrition Therapy who support people who have to be fed either parentally (IV) or enterally. They've been a great support to me and my family over the years. We've been to some of their national and local meet-ups in the past and they now regularly hold regional meet-ups at Hosp A. We keep getting letters about them and keep ignoring them because mum and dad don't want to go. But because PINNT have given me so much support over the years I don't just want to abandon them now I'm off feeds (although mum and dad seem to be happy to do that). So I've persuaded my parents that we should attend the next PINNT regional meeting in April just to let them know how well I'm doing and say thanks for their help before leaving PINNT soon.
As I mentioned earlier I probably should have spent this week resting after the Mika concert but that's never going to happen with me! :P So I've actually had quite a busy week. On Mon morning I did some errands with mum. I accompanied her to the library where she cleaned but because our home Internet was down at this point I used the Internet at the library instead. Then I helped mum with a Tesco shop where I bought some liquorish for Alf's birthday and between us we bought a book for Lizzy's birthday to go with the things we'd already bought her. And then we called in at the cinema where we pre-booked tickets for me, mum, dad and Claire to see Alice In Wonderland 3D on Mon. We couldn't do it over the phone because I had my CEA cinema card. That evening I parcelled up Lizzy's presents (a novel, a book about baked beans and a phone sock), helped mum sort out some library stuff on the computer and wrote a letter to my AYME buddy Kate. And that night I had a very funny conversation with dad when I was in the bathroom brushing my teeth and he woke up and got up to use the toilet. He thought he'd been asleep for hours but in fact he'd only fallen asleep 5 or 10mins ago. And he didn't realise he was half asleep so tried to hold a conversation with me, which was very funny! :P
On Tue I didn't do much, but I did wrap Alf and mum's birthday presents and went round to the post office to post off Lizzy's parcel (for her birthday on Thur) and Kate's letter.
On Wed me and mum did my Tac bloods at home in the morning before I took my Tac and then went into town where mum met up with a fellow knitter for drinks. I wandered round the shops but didn't buy anything. I borrowed a DVD called Sunshine Cleaning from the library though which I'm looking forward to watching :) Then on the way back from town we went to Hosp H for the remainder of my blood tests. There was a different phleb there than usual and she didn't know what to do when I presented her with a bloods letter from Hosp B. So she phoned the more experienced phleb to ask her advice, but as soon as she realised it was me she said that she'd come and take my bloods as sometimes other phlebs struggle. My bloods went fine first attempt :) And I was given the number of the lab at the hosp so next time I need bloods doing I have to ring up an hour or two in advance and check with the lab that the more experienced phleb is in. And then I'll go to the lab instead of the outpatient blood test area so she can do my bloods :) On the way home we called in at the surgery to collect some of my tablets and I went to the post office to send off the Tac blood. Hosp B have redesigned the packaging for it making the whole parcel lighter and cheaper to send :)
Wed was Alf's 17th birthday, so that evening after he got back from college Chris and Sophie came round to join us for a birthday meal for Alf. I thought I wouldn't be well enough to participate in it but I was :) He opened his presents before tea and seemed pleased with them. Then we all enjoyed a nice meal - steak for dad, Alf, Chris and Sophie and quorn burgers for me and mum - we're not veggie but just aren't keen on steak which Alf had chosen to have for his birthday. After tea we all chatted for a bit and me and mum were surprised to hear that Sophie is going to become a Samaritan. We were a bit puzzled by that because we can't even hold a conversation with her (she's lovely just not very easy to talk to), so can't imagine her being a Samaritan. But she's passed the interview so will go on a training course this summer. We'll see. Alf went into town that night to meet up with his friends, but rather than staying out all night he came home early because his friends weren't around. So he's gone out tonight instead.
On Thur morning I had to get up at 8.30am (eek!) because I had an orthodontist appt in the city at Hosp A. On the way there I text Lizzy to wish her happy birthday :) My orthodontist was slightly nicer than usual but I suspect that might be because he was aware that they were asking patients to fill in surveys about their experiences. I was very honest in mine, so thank goodness they were anonymous! He didn't give me much time though and gave me some information that was different from what he said last time I saw him so now I have no idea how much longer I'll need braces for. Grrr. He was pleased with my progress though and I've got another appt for 6 weeks time. And he didn't tighten my wires so my mouth isn't sore :) There was someone else in the room though and they weren't introduced to me, so I have no idea who they were!
After my orthodontist appt me and mum went into the city on the bus. At the weekend a friend had given me a code to get some free photo prints from Jessops online, so I decided to use that to get prints of some photos from Florida, Japan and my sixth form May Ball. The code only worked twice which I wasn't expecting, so I ended up using another code that I'd received when I'd signed up with Jessops online and paying some money too. But it worked out well - I think I got 190 photos printed for less than £6 :D You could pay for delivery or have them delivered to a local store for free, so I had mine delivered to Jessops in the city and picked them up on Thur. The Japan photos came out really well but the Florida photos were a bit blurry. And in the city I also helped mum to buy herself a new phone because her 7 year old Nokia 3410 had finally died! She bought the simplest Nokia in the shop but it's a bit different to her 3410 so I've been teaching her how to use it :) Then we had drinks in a cafe before heading home.
Yesterday morn I spoke to Lizzy on the phone which cheered me up. Her and M are going to come round for the day to see us at the end of April if not before :) And I gave her Alf's email address so she can send him an Amazon voucher for his birthday. Yesterday mum ordered herself some birthday presents online - I don't think that's usually the idea! Her reasoning was that she doesn't expect many birthday presents from others, so she's buying herself some instead! :P She bought herself a new phone on Thur and then some DVDs online yesterday.
And I've not been out of the house today. Dad made me laugh this evening though with a display of his non-existent acrobatic skills. Very silly, but funny. And for tea tonight we had a nice family meal (minus Alf who has gone out to meet his friends) for mum's birthday tomorrow. Tomorrow evening dad is taking her out for a meal in the city. He's a bit rubbish at getting organised though, he was very chuffed at himself for getting some money off vouchers for the meal but we just all had a panic when he appeared to have lost them. Luckily they turned up though. And he hadn't thought to book a table but we persuaded him to phone up tonight to check that there will be a table for them and there will be.
The Internet has been playing up recently. We've had a few very small power cuts that only last a second or two, but sometimes they stop the wireless router working for a little while. But on Mon I really couldn't get it working again. It did after a few hours though. And the Internet connection tends to go very slow and sometimes disconnects itself at night when I try to use it.
I thought that the Royal Mail had lost one of the Tesco rental DVDs that I'd posted back as they usually get there within a couple of days. This one got there eventually though but it took a week!
I heard that a BBC website called Blast that I used to use the message boards of a lot and still use now but less often is going to close down because the BBC have decided to focus on quality rather than quantity. I've made some really good friends on Blast but luckily had already found 2 of them outside of Blast. And one of those friends helped me track down another mutual friend outside of Blast a couple of days ago. So now I'm not too worried about Blast closing because I wont lose my friends from it.
Dad fixed my desk lamp last weekend which I was really grateful for. I thought I'd need a new lamp but apparently you can replace the bulbs and dad just happened to have one the right size :)
At Christmas my uncle (dad's brother) said he'd make my mum a huge pair of knitting needles and she received them last week. Mum doesn't like this photo because she doesn't look very good on it, but I've not had chance to take a better one yet and this does show the size of the needles:
I'm currently considering buying this from eBay to go on my wall next to my bed. I love the quote :)
This evening I received an invitation from my friend Lou to her 30th birthday party this summer. I only know the date so far, the other details are still to be confirmed. But Lou doesn't live too far from me so I think I might try to go if I feel up to it. Lou is lovely but it sounds quite daunting because I've never met her before and probably wont know many if any other people at the party and I'm not always very good at being sociable especially with people I don't know well.
The only game I've played on this week is New Super Mario Bros Wii but I got frustrated at it so didn't go on it for long. And I bought myself a new DS game online called Yoshi's Island DS, so I'm looking forward to that being delivered :)
I've listened to a bit of music this week. I listened to Paloma Faith's album on Spotify but that was mum's choice as I'm not very keen on her voice and her music, Owl City's Ocean Eyes album on Spotify but I soon got bored with that, Ellie Goulding's Lights album yet again and some of an album called This Is The Life by an artist called Amy MacDonald who I'd never heard of before but listened to after some friends suggested that I might like her music. I think it might take a few more listens as the songs don't seem particularly memorable after one listen.
I've also watched the music channels quite a bit too. Avril Lavigne is back with the theme song to Alice In Wonderland which you can see here. I'm not very keen though, seems quite a plain song to me. I was very disappointed by the Black Eyed Peas' new song as I loved their last two (I Gotta Feeling and Meet Me Halfway). And there is far too much Justin Bieber on the music channels for my liking, I really don't get why he's so popular! I was interested to see Diana Vickers' new video for her debut single Once, but was a bit disappointed because I really thought the video would be quirkier. The song is growing on me though and gets stuck in my head with each listen :P
On Mon I was happy to see that Starry Eyed by Ellie Goulding had charted at number 4 in the official singles chart and that The Family Jewels by Marina and the Diamonds had charted at number 5 in the official album chart :) And this week Ellie Goulding's album Lights has been selling well on iTunes so hopefully it'll chart well tomorrow.
The only DVD I've watched this week is Pirates of the Caribbean: The Curse of the Black Pearl which I watched with my mum this evening. I'd watched it a long time ago but didn't remember it. I enjoyed it but it was a bit on the long side :P
I've watched lots of TV (live, on Internet catch-up services and on the HDR) this week due to not feeling very well. I skimmed through the Shockwaves NME Awards where Little Boots looked quite different presenting an award, Marina and the Diamonds performed with Biffy Clyro and Lily Allen performed with the Big Pink. I also watched some of the winter olympics where I saw a liver transplant recipient competing, a very good BBC drama series called Five Days, an odd BBC documentary called Why Did You Kill My Dad?, a couple more episodes of Tracy Beaker Returns, two more episodes of the very interesting Syrian School, a rubbish programme about Australia border patrol but I was bored, a BBC documentary about real life stories magazines called Secrets for Sale, another episode of Channel 4's One Born Every Minute, the first 2 episodes of a great new ITV series that I'd highly recommend called Married Single Other, an interesting ITV documentary called Seven Days In Traffic that also mentioned organ donation, Film 2010 which contained a great review of Alice In Wonderland, a Channel 4 documentary about real life stories magazines called My Daughter Grew Another Head and Other True Life Stories, Friday Night with Jonathan Ross which contained an interesting interview with Tim Burton and Johnny Depp, part of an episode of The Bubble, a great BBC documentary called Sue Johnston's Shangri La and I half watched an episode of QI XL. And last night I watched an episode of Embarrassing Bodies because Tori said on her blog that her friend would be on it talking about cystic fibrosis.
I follow lots of blogs and most of them are written by people who have been affected by transplants. 22 year old Rachy keeps a blog that I read regularly here. Last week she attended transplant clinic and was told that her time really is running out and she will die unless she receives a lung transplant in time. You can read her blog post about that clinic here. I know I talk about organ donation a lot but if you are reading this and haven't yet signed up to the organ donor register then please do so. Or if you already have please talk to your family and friends about it. It only takes 2 mins and you can save lives. Click here. Thank you.
Since mid-week my hands have been really dry and quite sore around my knuckles. I've had this before but I can't work out what causes it. I've wondered if it's triggered by some soaps I'm not used to and this time it seemed to come on after I'd been out and that day I did wash my hands in some public toilets, but I'm not sure.
On Tue I weighed myself as usual and found I'd put on 0.8kg :) Generally I'm finding eating more manageable at the moment but sometimes I still struggle with meals. My dietician was very impressed with my weight, but said to continue with the high calorie puddings for now. I don't really want to put on any more weight though. She wont be able to make the joint clinic next Wed, which is disappointing as she seems to be the one who has listened to me most about my tummy pains and understands how much trouble they're causing me, so I'd hoped that she'd be able to get my consultants to take me seriously. My dietician isn't worried about having to miss the clinic though because my eating and weight is on track. I'm quite nervous about the clinic next week because from past experience I'm not expecting to make any progress with my tummy pains. But we'll see. Mum is taking me to the clinic and dad might be coming too but wont know til Mon whether he can get the day off work or not.
This week I also emailed the psychologist from Hosp B. I saw her last Nov to start CBT in the hope that it would help my ME. She said we'd continue the work via email but would plan more appts too. I emailed her after the last appt in Nov to try to arrange a follow up appt and then again in Dec with some CBT homework she'd asked me to do, but I didn't receive any replies. So I emailed her again this week to see if she's still happy to do CBT with me. If I don't hear by next Wed I'll mention the lack of contact to my consultants.
On Wed I received a phone call from the physio dept at Hosp H, they said that they'd received a referral letter from Hosp A. The lady I spoke to asked me to join a weekly conditioning class?! I explained that I'd been expecting to see a physio one-to-one so she said she'd find out more and phone me back. I feel seeing a physio one-to-one would potentially be more beneficial for me because that way I would be able to explain about having to be careful not to overdo it etc because of having ME. So hopefully I'll hear back from them soon. I have no idea what the referral from Hosp A to Hosp H will have said and whether it will even have mentioned that I have ME! I'll also mention the physio problems at the joint clinic.
On Thur 4th it would have been Codie's 5th birthday if she was still alive. You can read a post I made in her memory here and see a photo here.
Since I was very young I've been a member of an organisation called PINNT which stands for Patients on Intravenous and Naso gastric Nutrition Therapy who support people who have to be fed either parentally (IV) or enterally. They've been a great support to me and my family over the years. We've been to some of their national and local meet-ups in the past and they now regularly hold regional meet-ups at Hosp A. We keep getting letters about them and keep ignoring them because mum and dad don't want to go. But because PINNT have given me so much support over the years I don't just want to abandon them now I'm off feeds (although mum and dad seem to be happy to do that). So I've persuaded my parents that we should attend the next PINNT regional meeting in April just to let them know how well I'm doing and say thanks for their help before leaving PINNT soon.
As I mentioned earlier I probably should have spent this week resting after the Mika concert but that's never going to happen with me! :P So I've actually had quite a busy week. On Mon morning I did some errands with mum. I accompanied her to the library where she cleaned but because our home Internet was down at this point I used the Internet at the library instead. Then I helped mum with a Tesco shop where I bought some liquorish for Alf's birthday and between us we bought a book for Lizzy's birthday to go with the things we'd already bought her. And then we called in at the cinema where we pre-booked tickets for me, mum, dad and Claire to see Alice In Wonderland 3D on Mon. We couldn't do it over the phone because I had my CEA cinema card. That evening I parcelled up Lizzy's presents (a novel, a book about baked beans and a phone sock), helped mum sort out some library stuff on the computer and wrote a letter to my AYME buddy Kate. And that night I had a very funny conversation with dad when I was in the bathroom brushing my teeth and he woke up and got up to use the toilet. He thought he'd been asleep for hours but in fact he'd only fallen asleep 5 or 10mins ago. And he didn't realise he was half asleep so tried to hold a conversation with me, which was very funny! :P
On Tue I didn't do much, but I did wrap Alf and mum's birthday presents and went round to the post office to post off Lizzy's parcel (for her birthday on Thur) and Kate's letter.
On Wed me and mum did my Tac bloods at home in the morning before I took my Tac and then went into town where mum met up with a fellow knitter for drinks. I wandered round the shops but didn't buy anything. I borrowed a DVD called Sunshine Cleaning from the library though which I'm looking forward to watching :) Then on the way back from town we went to Hosp H for the remainder of my blood tests. There was a different phleb there than usual and she didn't know what to do when I presented her with a bloods letter from Hosp B. So she phoned the more experienced phleb to ask her advice, but as soon as she realised it was me she said that she'd come and take my bloods as sometimes other phlebs struggle. My bloods went fine first attempt :) And I was given the number of the lab at the hosp so next time I need bloods doing I have to ring up an hour or two in advance and check with the lab that the more experienced phleb is in. And then I'll go to the lab instead of the outpatient blood test area so she can do my bloods :) On the way home we called in at the surgery to collect some of my tablets and I went to the post office to send off the Tac blood. Hosp B have redesigned the packaging for it making the whole parcel lighter and cheaper to send :)
Wed was Alf's 17th birthday, so that evening after he got back from college Chris and Sophie came round to join us for a birthday meal for Alf. I thought I wouldn't be well enough to participate in it but I was :) He opened his presents before tea and seemed pleased with them. Then we all enjoyed a nice meal - steak for dad, Alf, Chris and Sophie and quorn burgers for me and mum - we're not veggie but just aren't keen on steak which Alf had chosen to have for his birthday. After tea we all chatted for a bit and me and mum were surprised to hear that Sophie is going to become a Samaritan. We were a bit puzzled by that because we can't even hold a conversation with her (she's lovely just not very easy to talk to), so can't imagine her being a Samaritan. But she's passed the interview so will go on a training course this summer. We'll see. Alf went into town that night to meet up with his friends, but rather than staying out all night he came home early because his friends weren't around. So he's gone out tonight instead.
On Thur morning I had to get up at 8.30am (eek!) because I had an orthodontist appt in the city at Hosp A. On the way there I text Lizzy to wish her happy birthday :) My orthodontist was slightly nicer than usual but I suspect that might be because he was aware that they were asking patients to fill in surveys about their experiences. I was very honest in mine, so thank goodness they were anonymous! He didn't give me much time though and gave me some information that was different from what he said last time I saw him so now I have no idea how much longer I'll need braces for. Grrr. He was pleased with my progress though and I've got another appt for 6 weeks time. And he didn't tighten my wires so my mouth isn't sore :) There was someone else in the room though and they weren't introduced to me, so I have no idea who they were!
After my orthodontist appt me and mum went into the city on the bus. At the weekend a friend had given me a code to get some free photo prints from Jessops online, so I decided to use that to get prints of some photos from Florida, Japan and my sixth form May Ball. The code only worked twice which I wasn't expecting, so I ended up using another code that I'd received when I'd signed up with Jessops online and paying some money too. But it worked out well - I think I got 190 photos printed for less than £6 :D You could pay for delivery or have them delivered to a local store for free, so I had mine delivered to Jessops in the city and picked them up on Thur. The Japan photos came out really well but the Florida photos were a bit blurry. And in the city I also helped mum to buy herself a new phone because her 7 year old Nokia 3410 had finally died! She bought the simplest Nokia in the shop but it's a bit different to her 3410 so I've been teaching her how to use it :) Then we had drinks in a cafe before heading home.
Yesterday morn I spoke to Lizzy on the phone which cheered me up. Her and M are going to come round for the day to see us at the end of April if not before :) And I gave her Alf's email address so she can send him an Amazon voucher for his birthday. Yesterday mum ordered herself some birthday presents online - I don't think that's usually the idea! Her reasoning was that she doesn't expect many birthday presents from others, so she's buying herself some instead! :P She bought herself a new phone on Thur and then some DVDs online yesterday.
And I've not been out of the house today. Dad made me laugh this evening though with a display of his non-existent acrobatic skills. Very silly, but funny. And for tea tonight we had a nice family meal (minus Alf who has gone out to meet his friends) for mum's birthday tomorrow. Tomorrow evening dad is taking her out for a meal in the city. He's a bit rubbish at getting organised though, he was very chuffed at himself for getting some money off vouchers for the meal but we just all had a panic when he appeared to have lost them. Luckily they turned up though. And he hadn't thought to book a table but we persuaded him to phone up tonight to check that there will be a table for them and there will be.
The Internet has been playing up recently. We've had a few very small power cuts that only last a second or two, but sometimes they stop the wireless router working for a little while. But on Mon I really couldn't get it working again. It did after a few hours though. And the Internet connection tends to go very slow and sometimes disconnects itself at night when I try to use it.
I thought that the Royal Mail had lost one of the Tesco rental DVDs that I'd posted back as they usually get there within a couple of days. This one got there eventually though but it took a week!
I heard that a BBC website called Blast that I used to use the message boards of a lot and still use now but less often is going to close down because the BBC have decided to focus on quality rather than quantity. I've made some really good friends on Blast but luckily had already found 2 of them outside of Blast. And one of those friends helped me track down another mutual friend outside of Blast a couple of days ago. So now I'm not too worried about Blast closing because I wont lose my friends from it.
Dad fixed my desk lamp last weekend which I was really grateful for. I thought I'd need a new lamp but apparently you can replace the bulbs and dad just happened to have one the right size :)
At Christmas my uncle (dad's brother) said he'd make my mum a huge pair of knitting needles and she received them last week. Mum doesn't like this photo because she doesn't look very good on it, but I've not had chance to take a better one yet and this does show the size of the needles:
I'm currently considering buying this from eBay to go on my wall next to my bed. I love the quote :)This evening I received an invitation from my friend Lou to her 30th birthday party this summer. I only know the date so far, the other details are still to be confirmed. But Lou doesn't live too far from me so I think I might try to go if I feel up to it. Lou is lovely but it sounds quite daunting because I've never met her before and probably wont know many if any other people at the party and I'm not always very good at being sociable especially with people I don't know well.
The only game I've played on this week is New Super Mario Bros Wii but I got frustrated at it so didn't go on it for long. And I bought myself a new DS game online called Yoshi's Island DS, so I'm looking forward to that being delivered :)
I've listened to a bit of music this week. I listened to Paloma Faith's album on Spotify but that was mum's choice as I'm not very keen on her voice and her music, Owl City's Ocean Eyes album on Spotify but I soon got bored with that, Ellie Goulding's Lights album yet again and some of an album called This Is The Life by an artist called Amy MacDonald who I'd never heard of before but listened to after some friends suggested that I might like her music. I think it might take a few more listens as the songs don't seem particularly memorable after one listen.
I've also watched the music channels quite a bit too. Avril Lavigne is back with the theme song to Alice In Wonderland which you can see here. I'm not very keen though, seems quite a plain song to me. I was very disappointed by the Black Eyed Peas' new song as I loved their last two (I Gotta Feeling and Meet Me Halfway). And there is far too much Justin Bieber on the music channels for my liking, I really don't get why he's so popular! I was interested to see Diana Vickers' new video for her debut single Once, but was a bit disappointed because I really thought the video would be quirkier. The song is growing on me though and gets stuck in my head with each listen :P
On Mon I was happy to see that Starry Eyed by Ellie Goulding had charted at number 4 in the official singles chart and that The Family Jewels by Marina and the Diamonds had charted at number 5 in the official album chart :) And this week Ellie Goulding's album Lights has been selling well on iTunes so hopefully it'll chart well tomorrow.
The only DVD I've watched this week is Pirates of the Caribbean: The Curse of the Black Pearl which I watched with my mum this evening. I'd watched it a long time ago but didn't remember it. I enjoyed it but it was a bit on the long side :P
I've watched lots of TV (live, on Internet catch-up services and on the HDR) this week due to not feeling very well. I skimmed through the Shockwaves NME Awards where Little Boots looked quite different presenting an award, Marina and the Diamonds performed with Biffy Clyro and Lily Allen performed with the Big Pink. I also watched some of the winter olympics where I saw a liver transplant recipient competing, a very good BBC drama series called Five Days, an odd BBC documentary called Why Did You Kill My Dad?, a couple more episodes of Tracy Beaker Returns, two more episodes of the very interesting Syrian School, a rubbish programme about Australia border patrol but I was bored, a BBC documentary about real life stories magazines called Secrets for Sale, another episode of Channel 4's One Born Every Minute, the first 2 episodes of a great new ITV series that I'd highly recommend called Married Single Other, an interesting ITV documentary called Seven Days In Traffic that also mentioned organ donation, Film 2010 which contained a great review of Alice In Wonderland, a Channel 4 documentary about real life stories magazines called My Daughter Grew Another Head and Other True Life Stories, Friday Night with Jonathan Ross which contained an interesting interview with Tim Burton and Johnny Depp, part of an episode of The Bubble, a great BBC documentary called Sue Johnston's Shangri La and I half watched an episode of QI XL. And last night I watched an episode of Embarrassing Bodies because Tori said on her blog that her friend would be on it talking about cystic fibrosis.
I follow lots of blogs and most of them are written by people who have been affected by transplants. 22 year old Rachy keeps a blog that I read regularly here. Last week she attended transplant clinic and was told that her time really is running out and she will die unless she receives a lung transplant in time. You can read her blog post about that clinic here. I know I talk about organ donation a lot but if you are reading this and haven't yet signed up to the organ donor register then please do so. Or if you already have please talk to your family and friends about it. It only takes 2 mins and you can save lives. Click here. Thank you.
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