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Documenting not dying since October 2013.

The 26th & 27th; It's nice to get good news from him occasionally.

The 26th & 27th; It's nice to get good news from him occasionally.

 The 26th of June.

Waking up at half past five is really not my favourite. Today it has happened again and all the radio in the mornings at the moment is just horrific shit about Boris or Jeremy so I can't listen to that because it makes me angry. This morning I ended up listening to an episode of Heresy, then This American Life, which was about being on TV but not knowing about it, like the people who appear on Cops but are too wasted to consent, or the babies who play Judith on The Walking Dead. It was really interesting!

I got up about eight, and went downstairs to have breakfast before being dressed because my stomach was getting very grumbly. It had been awake for some time and not been fed. After I was presentable, I tried phoning the eye clinic sister, because I got an appointment to see Mr. Kolli this afternoon which I was not going to be able to make. He said if I couldn't come today, I should just go tomorrow and say he said it was fine. However, she did not answer, no matter how many times I rang. I asked Mommy to keep trying while I was at Black Sheep, which was going to be most of the day.

My appointment with Gemma was at 11, so when I arrived, we had a chat about what kind of colours I wanted, which was kind of pinks and purples, but that depended on how well the blues and greens lifted out. Discussed the cut with Michaela, which was basically a bit softer and more feminine, and off we went! Gemma first put the lightener on, and while that did its job, I went over to Clare to get my nails done. I discovered the other day that I am quite shit at that at the moment, so I've got some shellac nails (my own, not fake) and they should last me three weeks! Clare was great - she is going to get me another good nail file like the one I got from Debenhams when I went with Mary - and we found we are both kindred spirits in our service station snobbery. Starbucks and an M&S Food is what we're looking for, and if it doesn't even have a Costa we're not going. Unless it is purely to pee. She hasn't been to the Gloucester Services, so she's going to have to have a special day trip.

That was finished in just the right amount of time, then it was for to wash and paint my hair! We went for a coral around the back and sides, purple roots and kind of magenta tips. Like it very much! It didn't take long for Michaela to cut, then I got to play with squidgy little Winnie (Michaela's new baby) until Daddy came to get me. Oh, and I had been extolling the virtues of my surgery to everyone, which had been overheard by one of the other clients who had also had it recently and knew exactly how I was feeling!

I got home about three, and when Mommy got back from Grandma's, she said she'd eventually had to phone Mr. Kolli's secretary, who wasn't there. But she spoke to one of the other ones who has got me an appointment in tomorrow morning's clinic. Unfortunately, it is at 8:45. Once I am finished in the eye department, we will have to hang around the hospital until 11:50 when I am seeing Dr. Thompson. Such fun!

The 27th of June.

Well, I didn't wake up at half past five, but my alarm scared the crap out of me when it went off at six. We had to leave the house at quarter to eight and ugh, that is too early. I'd just got my book out to try and pass the time while waiting for my name to be called, when a nurse did exactly that! Had my vision checked, at which point I realised that I hadn't actually brought my glasses with me, but that didn't seem to matter. The right eye was brilliant, but the left eye was utterly shocking. Mr. Kolli later said that my vision pre-surgery was so bad, I could have been registered blind! Frankly I'm just annoyed that I could have had a guide dog all this time. Bah. Anyway, she put the dilating drops in, so then I couldn't read my book, and back to the waiting room I went. I was first on Mr. Kolli's list, so I at least went in pretty much straight away. We had a chat about how happy I am with my new vision, and we talked about the eye drop palaver after the surgery. Apparently he did ask for preservative free drops so it is all the pharmacy's fault! So rude. So he had a look at my eyes and the right one looks good, but the left one looks very angry and inflamed (the GvHD) and it's not currently safe to operate on so I have to do all of the drops in both eyes for the next two weeks and I'll see him again then! That does explain the lazy eye appearance thing, so I am hopeful that doing the steroid drops will alleviate that. Don't really want to go to London looking like this. He also wanted to know where I got my Moomin jumper from, because his wife loves the Moomins. She has good taste. She will be disappointed though because you cannot get it anymore. I did tell him about the Moomin socks from Amazon though.

We then had nearly two hours to kill until my appointment with Dr. Thompson, so went to get coffee and some Pom Bears because I was hungry. We sat in Costa for a while, but eventually the smell of fried food from the other counter was a bit too overwhelming so we moved to one of the other waiting areas, where we were spotted by Philippa. So then we just chatted with her and that made the time fly by!

At half eleven, we thought I'd better check in for my respiratory appointment, and I confused the guy on reception because I look different to last week when I had blue hair and glasses. Still, I got recognised in the waiting area by a hospital transport person who was Louise who I used to do photography class with! I haven't seen her for years but she's doing this now (along with a bit of photography here and there) so I might see her around. Fun!

Dr. Thompson called me in, and he commented on the new appearance but it was more about the lack of glasses than the hair - he was struck by the yellow dye in my eyes from the drops earlier but had a worry that it was liver related. No no, just temporary. He got round to looking at my results from the tests last week, and most of them were the same, except for my gas exchange which has slightly improved! To be honest, I don't think that will make a huge difference in my day to day life, but it's nice to get good news from him occasionally. He also wants me to do some more walking outside of the house, like round the supermarket, pushing my wheelchair so I walk for a bit, then can sit down if I need to. It's apparently the best whole-body exercise I can do, and I am up for anything that will make my life easier.

We finally escaped at about half past twelve, and were very hungry when we got home. Had lunch, my third coffee of the day, then I went upstairs to do my exercises with a podcast (not going shopping immediately). I spent the rest of the afternoon in front of the television, catching up on things we've recorded while watching Love Island, and now I want to go to bed.

The 28th & 29th; I already look less like Quasimodo!

The 28th & 29th; I already look less like Quasimodo!

The 24th & 25th; Going to have to embrace this face.

The 24th & 25th; Going to have to embrace this face.