Just FYI: I have been in hospital again since the 10th of May. The pneumonia in my left lung didn’t go completely and I’ve got infection in my airway. I’ve been writing posts on my phone but not got the impetus to put them up. I’m okay, I’m just on antibiotics and it’s taking a long time to get better. I feel like crap but I’ll be okay.
The 7th of May.
The eyes are less sleepy today, and that is welcome, but what is less so is that it has been painful to have my left eye open since I woke up, no matter how many eye drops I put in.
It’s been a day of mainly blog admin, so a short entry today. This morning, I wrote about yesterday while watching Sunday Brunch, occasionally muting it when Pixie Lott was on (I’m sorry but I just can’t stand her).
After lunch, I finished typing up the six blog posts, and they are scheduled to be published over the next several hours. While I did this, I watched four more episodes of 13 Reasons Why. Now I have four left, and I don’t know if I can be arsed to watch them or if I’ll just read what happens. I want to know, but the show is kind of a drag.
I have been thinking more about my arm. Of course I have, I think about it all the time. I wonder if we are being somewhat narrow-minded about the cause? Is there anything else that could be the reason behind the swelling? The only thing I can come up with is lymphedema, but if it is that, surely the compression garment would be having some kind of effect? None of it makes any sense.
The 8th of May.
I am desperate to have a nap again and my level of pain is still the same. Probably going to have to double the pregablin I think, so I will get even sleepier. But maybe that will wear off and the pain will get better.
The only interesting thing that happened today was that I had my appointment with Mr. Titley, the plastic surgeon that Miss Byrom had written to about me. First of all, I had to tell him my entire history, and there’s so many things to remember now. I’m going to have to write down exactly what I have been through and when in a relatively concise format. I almost forgot about the venoplasties, despite my arm being literally right in front of me.
Anyway. We then moved on to why I was actually there. I ran through my history with the Women’s and Miss Byrom and what we have been through so far. He talked to me about what he has done for Miss Byrom before, which is not like what I will probably need, so I may well need some kind of bespoke procedure. Typical of me. However, he can’t offer me any particular treatment until he knows exactly what he is dealing with, so I will need to be examined under general anaesthetic. He needs to talk to his anaesthetist who will need to talk to Dr. Thompson, then I’ll probably get a date for another ambulatory care day.
He asked what I’d like to get out of this, and frankly I just want one part of my body to do its fucking job like it used to. If someone were mad enough to want to date me, I don’t want yet another reason to put them off. Considering the fact that most men ask if I can still have sex when they find out about my disability, I’d like saying yes to not become a lie.
The 5th of May.
More trips out today. Busy busy.
When I woke up, I was struggling, because the oxygen cylinder upstairs had run out. However, things have improved since then. It is always worst in the mornings and evenings. After breakfast, I watched the new episode of Riverdale, and (no spoilers) SO. MANY. REVELATIONS. Also I am sick to death of Veronica Lodge always bringing it back to her and her dad. Do not care, shut up.
I had an appointment at the GP at quarter past one to discuss pain relief. The buprenorphine is making absolutely zero difference to my pain, and she seemed quite surprised to hear this. The next step is to try pregablin instead, so I’ll start that tonight. Fingers crossed it doesn’t affect my breathing.
We came home for about an hour, then we were back out to the dental hospital, just for a check up. They were running late, so I got a lot of The Burial Hour read while we waited. I got called by a young dentist called Joseph who looked about twelve, but was very competent. He looked at my mouth to see if there were any signs of GvHD while another dentist scribed, then we just had to wait for their senior colleague to check I was fine. He was with another patient, and while we sat, we got onto the subject of Netflix, and the girl who’d been writing watches Pretty Little Liars and Riverdale too, and they both watched 13 Reasons Why, so we were in no rush for him to arrive.
Dr. Khan finally came, and thinks my mouth looks the best he’s ever seen it, so they don’t want me back for four months.
As soon as we left, I reopened my book as I was at a critical point, and now it is finished. Oh, Jeffery. Clever, clever Jeffery.
The 6th of May.
Do not like this new pain drug, pregablin. So far it is not making my back feel any better, it has just made me really sleepy all day. Not exactly tired, but my eyes just want to close. It’s not ideal. I’m going to continue with it for a few days, see if the sleepiness wears off and the pain gets any better. I’m not optimistic but I have to give it a chance.
My day has been a really rather dull one, for the most part – I have been sitting with the laptop, typing up the blog entries that I have got behind on posting. There were six to do I got three done. They’re still not posted because I need to add photos and I do that on my iPad. It is very boring but it must be done.
I had a couple of breaks in which I went to sit with Sam and we were both sleepy. He is such a good boy that if nobody wants to adopt him, I will beg Daddy to let us keep him. He won’t live that long, won’t cost us a huge amount of money.
This evening I went out with Sadie to see Joel Dommett. She is a bit in love with him and asked if I’d go so I agreed – although I’ve already seen his show, I was interested to see how he would make the show work, going from a 90 seat room to an 1800 seat one. When we arrived, I saw JT, and we had a little catch up, then he had a look at our tickets and asked if we wanted to go in the wheelchair space instead. Considering they were better seats and I didn’t have to move, I was only too keen to say yes.
The show has definitely improved since October, and I think it actually works better in the larger space. I’d completely forgotten about Laser Dick, but by the second chorus I was singing along again. And he’s changed the ending, which I won’t spoil, but it’s definitely more suitable for the bigger venues he’s doing. He’s not coasting on the fame he’s got from I’m A Celebrity; he’s worked really hard and it’s paying off.
The 3rd of May.
I have been putting this off because writing it down makes it real.
It’s been a pretty quiet, mildly shitty day. I still have this stupid dry cough which wakes me up throughout the night, although my throat is less scratchy now, which I suppose is a plus.
We went into Birmingham this morning so I could pick up my copy of the new Jeffery Deaver novel, The Burial Hour. I also needed to get a thank you card to give James tomorrow when we have our last ever appointment, and Mommy wanted a blank card to put a cross-stitch in but couldn’t find one.
This afternoon, I phoned Andrew’s secretary, Emelda, again, but he hadn’t got back to her and there were no spaces in his clinics until the beginning or end of June. At this point I got upset and I tried to explain about the wedding. I didn’t do it on purpose, but she then said she’d keep trying for me and I’d hear back as soon as she spoke to him.
Mommy then went to Grandma’s, and I watched the new Pretty Little Liars and started the book. Mid-programme, Emelda called me back, and I’ve got an appointment for 25th May, so I will “go to the ball”, as she put it. I didn’t tell her that really I need to see him much sooner because she’s obviously pulled strings to get me in there, but I’m going to have to attend the wedding in my wheelchair, on oxygen and with a giant, swollen arm. I am so tired of this. My hateful body.
The 4th of May.
Nothing like bad news from a friend to prompt a reality check. Dean had his operation on Wednesday to remove the tumour on his rib. That part went as predicted, but what the had not expected was to find new tumours elsewhere that weren’t visible on his scan four weeks ago. Obviously this has been a shock to everyone, so they don’t know what the plan will be. I am just devastated for him, for Adam, and his family. I know how it feels to relapse but he hasn’t even been in remission yet. He knows I am here, for whatever he needs, This is the worst of days.
Up until hearing this news, I was having a pretty good day. I don’t think I have coughed so much today, but I won’t get my hopes up about improvement just yet. I had an appointment at Black Sheep to see James to re-tone my hair, my last session with him! I gave him his crocheted monkey and a card with a rainbow sheep on – I thought it was the most appropriate. I was not there for so long today, he was just going over the colour again, so now I’m a bit more vibrant. It has been our best work.
Home briefly, then back out, to the QE for my physio assessment. They were very on time, so I had barely started reading my book before I was called through. I filled in a questionnaire about my pain, then a chap came to see me. We talked a little bit about medical stuff and my current limitations re: oxygen, then he wanted to see what I could do. He had me stand up and bend forwards and backwards, then sit on the bed and twist left and right. Apparently I am quite stiff when going backwards and left. I then had to lie back and do some stuff with my pelvis and legs. Basically, he can give me some exercises/stretches to try out for a few weeks, then I’ll go back and we’ll see what progress has been made. He was very impressed with my enthusiasm and determination, which made me laugh because I used to be so terrible with physios, always pretending to be asleep when they came. I learned the hard way that that is not helpful.
The 1st of May.
I feel like crap. I think I might have caught what Mommy had.
I had a better night in my nice, warm, double bed, but I am still exhausted. Need a few more sleeps before I catch up.
My intention for today was to write about the weekend and maybe even blog about it, but the reality has been sitting in the armchair (which feels just divine compared to my wheelchair/the car) and watching tv we recorded. Trying not to cough which is difficult because my throat is all scratchy. I had a honey and lemon but it was not particularly helpful.
Ohhh I don’t want to be ill again. Especially if it’s a common virus because they always make me feel like shit and last so much longer than they should, the bastards. Going to have some Strepsils and an early night.
The 2nd of May.
Trying to work out if I am ill or just tired from the weekend. I really hope it’s the latter. My sats have been up and down, and I have this dry cough that is hard to alleviate. Strepsils have not been much good.
I have been quite pathetic all day, curled up in my most comfortable clothes. Soft jumper and jogging bottoms. Still a big jumper because my arm is still the same size, so we rang Andrew’s secretary this morning. I need to be in his clinic on Thursday. John and Maddie’s wedding is in a month and I don’t fancy looking like a freak. The thing is, I don’t know what else can be done.
This afternoon, I finally got round to finishing writing about Saturday. I have yet to do Sunday. It took a couple of hours, but that was because I was half-watching recorded programmes at the same time. It’s going to be a long post when it comes.
Mommy went to pick up Sam from Lee’s, so I’ve been in to sit with him for a while too, and have been floofed on. He’s settled right back in.
UGH my body is fucked.
The 27th of April.
It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.
After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.
We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.
Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.
We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.
The 28th of April.
I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.
We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.
We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.
I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows.
I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.
Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.