Archives For may

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 30th of May. 

Mommy is definitely poorlier than me, bless her. She’s full of snuffles and sinus pain. I am just coughing and occasionally blowing my nose. I did text Vlad this morning to postpone our first session because although I do not feel wretched, by no means am I up to training, and I don’t think fellow gym-goers would appreciate me spreading my germs all over the place. 

Sarah came back to see the kittens this morning and brought her friend Ruth with her, so we spent an hour with the little fatties running around. I’ve had to start feeding Gracie separately because when the other two are chowing down, she is too polite to muscle in and just gets left the scraps. No wonder she’s the smallest. 

This afternoon, I caught up on Agents of S.H.I.E.L.D (very stressful), then went back to the kittens so they could roam free and I could structure and finish my talk. I think I’ve got it now; it is all written down on my Moomin notepaper. 

Oh, and Alison brought me a cupcake from the Hummingbird Bakery which they visited this weekend while in London. Which reminds me, I need to factor in a cake trip after Anthony Nolan. 

The 31st of May. 

In the last half an hour, I have found out that the kittens are weeing somewhere they shouldn’t (I had to wash my hands a lot), but I also saw a big pug at the vet who was wandering around going “WAGHHH” which was vastly entertaining. 

Quiet day. Mommy is a bit better which is good, and I remain pretty much the same. I do my coughing in the morning and evening, so as long as that continues, I’ll be fine to do my talk at lunchtime tomorrow. 

This morning, I crocheted an orang-utan leg, and tried to decide what I’m going to do after the talk. I was planning on going to the zoo, but the weather is not going to be good for that, so I must find something else to occupy my time. I’ve also booked tickets for my trains in July when I have the parliamentary reception. 

After lunch, I sat with the kittens and let them run around until we had to take them to the vet for their first jabs. They were all very good when it came for the time for them to go in the carrier, and in the car they just looked out of the window, no sad mews at all. 

Gabby and Gabe have both put on a good amount of weight, about 150g each, but Gracie’s only gained 30g. Going to have to feed her more! Too polite! I have to weigh them again at home in a week and see how we’re doing. 

The 28th of May.

I am coming down from a sugar high. I might be ready to eat again relatively soon. More about that later. 

Woke up this morning to find that Mommy has also got some sort of cold. It’s not great in our house right now. I am just keeping my fingers crossed that I’m okay on Wednesday for my Anthony Nolan talk. Let’s not be ill please. I wrote up a blog post, read the paper and let the kittens out for a run. They having a growth spurt so every time I feed them, it disappears pretty much instantaneously. Gabe screams his miaows at me when he’s hungry. I texted Elliot, potential adopter of Gracie, and he’s coming to see her on Thursday. He’s 21, but I am going to have to do my best not to treat him like a child. 

After lunch, Becky and I went to this place in Small Heath called Eis Café where they do insane desserts and milkshakes. Becky had a massive warm cookie in a pan with ice cream and whipped cream, and I had a Fudge Brownie Locoshake. It was enormous and delicious and very, very sugary. By the time we’d finished, we were both eager for a lie down. I am in need of vegetables. Since getting home, I finished the orang-utan body I’m doing, and soon we’re off to see Romesh!

The 29th of May. 

Lovely sunny day so I put on a dress and the kittens went OOH FLESH MUST STAB WITH CLAWS. I am sporting a plaster plus several tiny puncture wounds. Also jeans. Obviously kittens and bare legs are a bad combination. 

This morning I was still in pyjamas, watching Sunday Brunch, and working on the orang-utan’s head. I seem to have got the hang of the fur stitch now, although I don’t think it’s ever going to be my favourite. 

After lunch, I went upstairs to get dressed and finish going through all my notes. I’ve got to the end now, even of the second disc (that one is mainly genetics reports and charts, not much of interest or use). There was a lot in what I read today about the pain I was in post-liver transplant. It was really, truly horrific and I’m not sure if we ever found the definite cause. I think it was to do with my gut GvHD that the accidental stem cell transplant caused. I eventually got off the PCA (patient controlled analgesia aka huge syringe of ketamine), fentanyl lozenges, oxycontin and oxynorm, but that wasn’t until I’d been transferred to the QE so it was at least a year. I really ought to be grateful that I’m not in that kind of agony every day now, but I still have pain, just elsewhere. 

And I still haven’t come up with an ending for my talk! Really going to have to work this out because Wednesday is very soon. 

The 26th of May. 

I love my internet pals so much. One of my instagram IV friends sent me a package today containing a blanket she made, fuzzy socks, a bracelet, a magazine, fairy lights, lip balm, all sorts of cute things, plus a lovely card that definitely did not make me well up. 

My day did not start off in such a wonderful way. When feeding the kittens, I got a claw in the finger that was very small but very sharp. I was applying plasters before I’d even had my coffee. While I drank it, I wrote up a blog post, then I went to let the pointy-toed rascals run around because I was going out this afternoon. I wish I could get them to sit still for ten seconds so I could take more good photos of them. 

Gym after lunch. I needed to go out and move around because my calves were threatening to seize up entirely, and I couldn’t have that. Nobody irritating today, the only bothersome thing that happened was that Super Burpee man arrived so close to the end of my workout, I didn’t get to enjoy him for long. Boo. 

The 27th of May. 

Christ, my calves are still super painful. If Vlad decides we’re doing calf raises again on Monday, I will have to insist upon vast amounts of stretching to minimise recovery time. 

I think I am developing a tiny illness. I am a little bit cough-y and having to blow my nose more than usual, but everything coming out is clear (I know you love the gory details) so I am hoping it won’t last too long. 

I had two phone calls from Sheila this morning because there was a potential adopter for Gabby and Gabe. At first we thought nothing would come of it because the lady wanted too boys, but she saw the pictures and she doesn’t care, they’re so cute, so the second call was to let me know that, and that I was to ring her to arrange a viewing. I did so, and we decided she’d come round at half four, when I would be back from the cinema. 

Daddy and I went to see Money Monster after lunch. Jack O’Connell does a very convincing American accent. It reminded me of The Big Short – the little people losing out because not everybody understands the maths, some people take advantage, and some people colossally fuck up. But they’re never the ones who pay. 

I’d just got my shoes off when Sarah, the potential adopter, arrived, so we sat on the floor while the kittens ran around and we talked. Gabe was very friendly, but Gabby was not being sociable. Still, she’s enamoured, and she wants to take them as soon as they’re ready.