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Documenting not dying since October 2013.

The 27th & 28th; It's going to take months.

The 27th & 28th; It's going to take months.

The 27th of August. 

It might be hard to believe but I genuinely had forgotten that today is Bake Off day until Daddy mentioned it while I was making my coffee. What a happy bonus way to start my Tuesday!

Having done the hair mask the other day, we'd cleansed out some colour so once again I was unhappy. Thankfully, I still have some of the Tigi Colour Trip dark red from Christmas so, having taken precautions to keep the colour from going literally anywhere other than where was intended, Mommy painted the rest of the tube over the red already present, really working it in over the blue bits. 

It had to develop for half an hour, so I sat on my bed, wrapped in a towel and listened to the radio. Conveniently, I tuned in just as they were talking to Sara about her new book, Sex Power Money, and some of the things she learned while researching and writing it. Another book that I'm going to have to add to the list of ones I want to buy but can't read until my eyes are fixed. Sara's bit didn't last for the whole thirty minutes, and the presenter had moved on to talking about the Harry Styles interview in Rolling Stone. I care somewhat less about that, so wasn't too bothered when it was time to rinse. 

Far happier with the colour, I came downstairs for lunch. That didn't last long though, because I went straight back up to my bedroom afterwards for some dark time. I'm seeing Mr. Kolli tomorrow so I would like optimum eyes. I listened to an episode of Hoovering and a Gardener's Question Time, then the GP rang to talk about eye drops. She was confused because she'd read the capital i of iopidine as a lowercase L, so was searching for the wrong drug on her system. As it happened, I had the box right there so I could even tell her the active ingredient of the drug, then all was well. I'd also had a call from Dr. El-Sharif, the liver doctor from Saturday. He'd had a look at my bloods and my tacrolimus level was fine, but my potassium was a bit high for his liking and my sodium a tad low. He thinks my Septrin could be affecting my potassium, so he wants to talk to Dr. Thompson about that (I think he is unlikely to get anywhere with that because Septrin is the one that's supposed to prevent me from catching pneumonia). What I had forgotten is that my blood pressure drug also affects my potassium, and he wants to have the bloods redone to make sure they're accurate, so when I go tomorrow I just need to pop along to liver clinic and they'll do them, then I can ask that they pass that message along. The sodium might be able to sorted by upping my hydrocortisone, so he's going to email Andy Toogood as well, who I will be seeing in October! So convenient. 

After all these chats, I decided it was time to come back down for good. Made an iced coffee because I didn't get a nap today, then I went to sit with Brooke and watch Breaking In. It is nice to watch a horror/thriller in which all the bad people die and all the good people live. I found it very distracting that the main bad guy was Mitch from Zoo. Brooke will be staying with us a bit longer, because last night I got a text from the people who came yesterday saying one of the boys had had an allergic reaction, so no cat for them. A real shame, because both boys were so taken with her and were clearly very excited about getting a kitten. Still, I get to keep her for now, and try to teach her that biting is not a fun game. 

The 28th of August. 

Oh man. It has been a long afternoon of hospital. 

This morning, I switched on the news, saw what Boris is doing and thought that could absolutely fuck off so no more of that today. I watched an episode of Bones, emailed Dr. Thompson about my flu jab (only to find he's not here until next Wednesday), and went to pet the kitty. She was all sleepy, but once she saw my Fuck Boris necklace, she had to play with it. 

That was only fun for so long, and then it was lunchtime anyway, so I put her back in her bed/box and went to have some food. I mentioned to Mommy that because my eye appointment at three was a walk-in, we didn't know when I would be done, so it might be a good idea to go and have my liver bloods done early. She agreed, so when we'd finished our respective lunches, we went off to the QE. 

The liver bloods were actually super easy - I went to the desk, they had the forms, and I was invited into a room to have them done immediately! My veins cooperated, so I think I was in and out in about five minutes. Fastest visit ever! If only ophthalmology had been so easy. 

Mr. Kolli was quite clearly being dragged around the whole clinic, being asked to give his opinion on everybody else's patients, so I didn't get in to see him until twenty to four. However, he'd barely sat down with me before someone came in and asked if he could go and give a second opinion on a patient who was on the table in theatre. He was very apologetic but I said it was fine - if I were that patient, I'd want him to come and look at whatever was happening too. He was out for about twenty minutes, then we actually got talking, and a student came in! Never one to pass up being a teaching opportunity, Mr. Kolli had a look at my eyes, then asked the student to. He managed to spot everything that was going on clinically, but he couldn't quite work out the underlying cause. He then had to ask for my history, and once I mentioned the leukaemia and the stem cell transplants, he knew it was GvHD. He then left, and we were able to have some proper talk about my eyes. I told him about dark time, and how I do feel it's improved since my last appointment. He thinks dark time sounds great, just to escape from the rest of the world. It does look better, but I had a couple of rogue eyelashes to whip out, and the pressure in my left eye has shot up to 22ish. We still need to bring down the inflammation, which means upping the steroid, but we can't do that with the pressure as it is. He then decided to go and chat with one of his glaucoma colleagues, which was another good ten minutes, and they came up with one drug, but I can't have it because it has a beta-blocker in it, and those aren't good for my lungs. Sigh! So the plan is to keep everything the same, but to start doing monopost again in my left eye, and see him again in a month. Hopefully then we can whack up the steroids, and once the inflammation is down, he can do the injection to kill off the stupid blood vessels, and I can have the second cataract done! It's going to take months, but we both know it's the right thing. He told me about another GvHD patient that had ended up with a different doctor who'd done a cataract operation, then put them on a really harsh antibiotic that had ended up creating a perforation in their eye in four weeks and they had to have a corneal transplant! That is not what I want. I am impatient, but I am also rational, and I really like being able to see. Especially as currently, my left eye is clinically blind, and it means that I can't do a lot of the things I enjoy! Knitting and crocheting is difficult when you can't see tiny stitches. Vision is very important. 

The 29th & 30th; It is so fucked up.

The 29th & 30th; It is so fucked up.

The 25th & 26th; Doesn't stop my brain being an idiot though.

The 25th & 26th; Doesn't stop my brain being an idiot though.