The 7th & 8th; I don’t think I’ve suddenly got better at everything.

The 7th of August.

Today seems to be the last really hot day. I hope so – last night I slept terribly. I should have had a second coffee at some point but I just never got round to it so now I’m very sleepy.

This morning, I got my blog post done before we went to The Spire. My appointment was meant to be at 11.45, but I ended up swapping with another lady who had another appointment elsewhere and wouldn’t make it. That was fine; I had nowhere else to be.

When I got called in, Julie was amazed at the size difference. She had a look at the sleeve I’m currently wearing and decided I need to go a size and class down, so I’ve got a prescription for that and hopefully Boots have ordered the right one. She also showed Mommy how to do the massage to deal with the remaining fat.

I have spent my afternoon being really cool, playing Rayman. Well, until four o’clock. I did the stupid next level, then a couple more, got The Elixir of Life (after a very frustrating bit) and thought it best to stop there.

Then, back to my dress. Now it’s a lot of back and forth, and I want to go to bed.

The 8th of August.

It is less warm for sure, but when it’s sunny oh boy it’s too much. I’m fairly sure I’m so sensitive because of photopheresis – I always had to wear sunglasses for 48 hours afterwards to try to prevent photophobia. I must admit I was not very diligent so it’s probably my fault that I can’t cope with brightness.

I kind of frittered the morning away doing a whole lot of nothing, apart from a bit of crochet. Keep plugging away at this dress, no matter how tedious this part is.

This afternoon was gym-time. Quiet again – maybe everyone has gone on holiday? I think the very committed girl must have because I now haven’t seen her for two visits on the trot. I had a weird sort of session – I did what I normally do and everything felt the way it normally does but my heart rate wasn’t going as high as usual. I think my heart rate monitor might have been having a wobble because I don’t think I’ve suddenly got better at everything.

The Janelle Monáe tickets came today and I could not be more excited.

 

 

The 5th & 6th; It hurt me to see.

The 5th of August.

I am tired again. It’s like I run out of energy by the end of the week. Not every week, but often enough for me to have noticed.

This morning, I did my blog post during Sunday Brunch, then crocheted the dress. I have tried it on and it fits so far – the most important part was where the armholes are and that’s fine, so I can carry on. If I had tried to carry on with the 2mm hooked yoke it wouldn’t have fitted so I’m glad I binned that one off.

After lunch, I sat with Dolly, watching House and continuing to crochet. She actually stayed under the chair for the whole time, sleeping, no matter who was in the room. Louise, the lady who’s going to adopt her, brought a carrier and some stuff that smells like them so Dolly can learn their smell and hopefully acclimatise a bit more quickly when she moves. We’ve spread the blankets and jumpers about and now I’m just hoping they’re not the reason she’s staying hidden.

My sleeve is really pissing me off – it’s either falling down, or if I pull it up it digs into my hand between the thumb and my forefinger. Can’t wait to get my new one that will fit.

The 6th of August.

Ugh my sleeve is so irritating! Just the place on my hand is really sore – it has rubbed the top layer of skin off so any time I remove it, I am covering it in handcream, although it’s hard to rub in because the skin is so sensitive. Bah.

Quiet morning – just crocheting the dress. Unravelled a round, only to realise I hadn’t actually made a mistake so I was annoyed at myself. It’s coming along nicely, I just need to pay attention to my counting.

This afternoon, I have been to the gym. The hot weather must have put everyone else off going because it was really empty! Barely any youths, and only one whose body spray caught in my throat. Still, I will be glad when the holidays are over and the amount of children returns to a minimum. When I came out, it was so sunny, it hurt me to see. I had my sunglasses on and my hand-visor but it was awful. I can deal with it being hot but when it physically hurts my eyes, I struggle.

The 12th & 13th; She remained under the chair.

The 12th of July.

Well, the news is depressing. It is all about Trump’s visit and I would rather avoid. Bleugh.

This morning, I did a blog post, then I was at the chiro. Had to be selective about what Trine could do because I am still a bit delicate. My neck was the main problem anyway; I think it did not get on with the holiday bed.

When we got back, we changed my sleeve and took the opportunity to wash my hair. My whole arm is turning a lovely shade of yellowy-green.

After lunch, I sat with Dolly all afternoon watching NowTV. Well, I watched, she ignored me and stayed under the chair. I watched the first episode of Sharp Objects, and why Amy Adams has not won an Oscar yet is beyond me. And the girl they have cast to play her younger self is spot on. I also saw the pilot of Twin Peaks because it seemed like something I would enjoy and I thought it was of a similar kind of vibe. I am heavily into Lara Flynn Boyle’s hair. Not so much the fashion.

Got to take the dressings off tomorrow. That’s going to be a pretty picture.

The 13th of July.

Last night was the first time that the sleeve has really bothered me since I got home. I kind of had to just keep squeezing it until it stopped itching. I had all the dressings taken off today in follow up clinic, just so the wounds could all be checked and cleaned. They all look good, not really even much to clean. I have to start using this ointment three times a day which doesn’t really get absorbed by the skin, so when the sleeve goes back on, it soaks through a little which is not a desirable look.

This afternoon, I caught up with the most recent Agents of S.H.I.E.L.D (Talbot gone totally Trump), then I went to sit with Dolly and watch some more of Twin Peaks. She remained under the chair, which I think was a smart move because it is the most batshit thing I have ever seen. The scene with the dancing dwarf was really quite insane. Plus I keep having to go to imdb to work out where I know people from, like Laura Palmer is Ellie from One Tree Hill, and Shelley is Alice Cooper from Riverdale. I’m such a millenial.

The 26th & 27th; Too hot for existing.

The 26th of June.

Oh god it is too hot for existing. No gym this week – it’s hard enough to breathe doing normal activity in this heat, really don’t think exerting myself is wise.

This morning, I typed up a blog post, although I have just realised that I didn’t actually post it, so I’ll do that once I’ve finished this.

Daddy took me to The Spire for twelve, for my appointment with the lymphoedema nurse. She measured my arm for my sleeve, and apparently I will be wearing it for quite a bit longer than six to eight weeks. I will see her six weeks after the surgery, which is when all the swelling will have calmed down a bit.

On the way home, we went to Tesco to buy ice lollies. Ended up with Calippos, Mini Milks and Fruit Splits, so we have loads of choice. Calippos give me flashbacks to Ward 8 after my liver transplant, became I could gnaw on them and not throw up, because flavoured ice was one of the only things I could actually digest. Eating them now, in the sunshine, is highly preferable.

This afternoon, I have been making my extra hexagons. Three colours left to do.

The 27th of June.

Pre-op day! Had to be there at ten thirty, and Daddy had to go to work but thankfully Alison was able to take us. It was pretty straightforward – we went through my history, albeit briefly, because they don’t need to know everything, talked through what I’m having done, had some bloods done, blood pressure, urine sample. That was entertaining because they gave me a she-wee-like device to get the pee into the bottle. I’m not sure how helpful it was. I’ll need to pick up a prescription for some pre/post-op antibiotics, and I might have to go back the day before for a group and save if they think I might need blood. Unlikely.

This afternoon, I have finished all of the hexagons, for definite this time, and been vaguely aware of the Germany/South Korea match. I also had a somewhat infuriating chat with the mechanic who’s fixing Mommy’s car. I told him multiple times that I wasn’t her, but he refused to hear it and just kept talking so I had to pretend it was my car and tell him I’d get back to him about picking it up. Thankfully not long after that, Daddy got home so he went down there to deal with it. I now understand Mommy’s reaction to that guy.

The 29th & 30th; More details coming soon.

The 29th of November.

It has been a productive day but not a very interesting one. Started off with a blog post, then some Cats Protection admin so Amanda could come to pick up paperwork and fees from me. I also made part of Daddy’s Christmas present before lunch.

Amanda came about half past one, and wanted to meet our current kittens, so we spent some time with them and she told me how Hugo and Harvey are getting on.

When she left, I went upstairs to work on the computer for a few hours. Making a promotional image for this Anthony Nolan event I’m going to be doing (more details coming soon) while I listened to a Richard Herring’s Leicester Square Theatre podcast. I was forced to stop by eye and back pain, and I have the base of it done, just need a bit more information.

That is all, really. In happy news, I got a Christmas jumper on today that I didn’t expect to fit. The compression garment does at least squeeze my arm down while it’s on.

The 30th of November.

I feel like today has been one of those days where I’ve spent lots of time on things for not a huge amount of reward.

This morning, I washed my hair, then rang Lydon’s to book the kittens in for neutering and chipping next week, and Black Sheep to see if Michaela could squeeze me in for a fringe trim this afternoon, which she could. Had a long chat with Mommy and wrote another email about this Anthony Nolan thing, now waiting on a reply on that as well as the one I wrote yesterday.

After lunch, I was back upstairs on the computer, working on the same thing while I half-watched Riverdale and listened out for the DPD man bringing a delivery for Mommy. Then I had a phone call from Irregular Choice because they got my Christmas shoes in! Thankfully, I had already had an email from them so they are on their way! Festive feet.
On the way to Black Sheep, I talked to Christine on the phone, mainly about how cold it is and how young people don’t wear enough clothes.

I will be wearing many clothes this evening, as I will be out seeing No Such Thing As A Fish Live!

The 21st & 22nd; I knew it was bad, but not that bad.

The 21st of November.

Well I had a great start to my day, securing tickets for Sadie and I to go and see My Dad Wrote A Porno Live! Super excited for that, and we have great seats too.

I was at the chiro at 10:45, and that was surprisingly painful. The angry tendon that runs up the whole right side of my spine was very unhappy as soon as Trine touched it. Still, I am seeing Dr. Blaney tomorrow. Pray for steroid injections.

This afternoon, I planned to do a bit of looking at Christmas present ideas, but I got started on some crochet and just haven’t put it down. I’ve also been waiting for the pharmacist at Boots to ring, but they haven’t. They were supposed to be calling because my spare compression garments have arrived after waiting for two weeks, only to find the person on duty ordered the wrong thing. They have the code of the product but are apparently incompetent at using the information provided. Bad enough when the GP prescribes the wrong thing but when they have all the information and still fuck up…I don’t know. Gah.

The 22nd of November.

A slightly less productive day at hospital than I had hoped for, but that was more due to a misunderstanding on my part rather than anything that happened there. It emerged that the appointment with the anaesthetic team that had appeared on myhealth was not with the pain team, it was the one I had as part of the pre-assessment clinic. And having checked again, I don’t actually have another appointment booked in with Dr. Blaney, so we’ll be ringing his secretary tomorrow.

This did mean my visit was rather more straightforward. First I saw one nurse who did my height, weight and blood pressure. Then a sister called Kat, and we had to talk through my whole history, all my medications, what I’m allergic to, what I’m having done, and she gave me the pre-surgery checklist of things I have to do or not do in the hours preceding the procedure. I then went for bloods, but my veins didn’t want to cooperate, so I went to see the anaesthetist and drink a lot of water to pump up my veins. Had a very long conversation with him, mainly about my lung function, the pneumothorax and the pneumonia. He mentioned that my lung function is only 23% of what it ought to be, which was a surprise. I knew it was bad, but not that bad. Wow. Anyway, my lung function is not important because I’m having a regional block, which is like an epidural but it’s just one injection. I had to try to explain why I need to be examined in this situation but I’m not sure how much it made sense. That was all fine, so then I returned to the phlebotomist and she got some blood out of the side of my wrist. Then home!

 

The 3rd & 4th; Christmas Crafts ahoy!

The 3rd of November. 

I keep waking up earlier than I want to. So I put the radio on and the Today programme infiltrates my dreams, it’s rather irritating. 

This morning was routine blog post, chat with kittens, then back to Christmas gnome. Finished off the cuffs on the arms, then Mommy had made cinnabons so I iced them and we had lunch. After we’d given the kittens theirs, the buns had cooled down sufficiently for me to have one. Oh man, they are my favourite. 

Once I had finished and licked all the icing off my fingers, it was time to do the final pieces of the gnome. Rather large hat, nose and beard. Few more episodes of The Blacklist down. And I had a couple of phone calls – one from the QE, checking that I was still going next week to get my eyelashes done, and from St. Giles, because I’d rung them with another sleeve query. The sleeve on the prescription is not the one on the box, but we have solved the mystery and that’s all fine. 

The 4th of November. 

Well today I had to get up early and my alarm woke me up, such is life. Up, breakfast, coffee. Picked up a bunch of tote bags to put any shopping I might do in, and we went out when Becky and Alison arrived. Christmas Crafts ahoy!

I split off from the others, because we have different interests and it’s easier for me to go around on my own in the wheelchair. I had a bimble up and down the rows of stalls, growing frustrated because I couldn’t find what I was looking for. Eventually, I had to buy a show guide for a map. So then I found Toft and had a nice chat with the girl there, and I bought a kit to make Hank the Dorset Down Sheep. Then I bought some heavily discounted merino wool to make some socks, and went in search of some stuff to make a necklace. I have a crocheted patch to use as a pendant but it was impossible to locate what I needed. Will have to go to Hobbycraft or something. 

I met back up with Mommy, Becky and Alison, and we went to look at the fancy cakes. Some of them were incredible, like this dog wearing a raincoat. But after a while, the smell of sugar in the air was giving me a headache, and it was time to go. 

When we got back, Becky came in to meet the kittens. She could not deal with their tiny size. Got a lady coming to see Chester tomorrow!

The 24th & 25th; Weird new development.

The 24th of October. 

Well, here’s a weird new development; part of my lower arm has gone numb. When I touch it, it feels like it would if I had had local anaesthetic put in. Just dead. 

I rang the lymphoedema nurses to see if they thought it was because of the new compression garment. They said probably not, but to take the sleeve off for a day or two, and see if it changes. So far, it’s still exactly the same. I have to ring them on Thursday to let them know but I’m pretty convinced it’s something internal. I might email Anne Dancey as well to see what she thinks because Andrew is unavailable as it’s half term. 

This afternoon, I was at the hospital for Dr. Richter’s clinic. I didn’t see her, but one of her colleagues, Dr. Antrobus. He wanted to know about my infection history, so I tried to run him through the significant ones. Most of the discussion revolved around the pneumonia this year and the e. coli/klebsiella/sepsis debacle of 2013. He has ordered a couple of blood tests to look at my levels of antibodies and what pathogens I’m immune to. He thinks there probably isn’t any treatment that they would give to reduce the white cell count, and he’s going to write to everyone concerned to basically say that it may well just be one of those things and they should just accept it and give me what I need. 

The 25th of October. 

Having so much bizarre shit go on with my body has made me more neurotic than I think is normal. I emailed Anne this morning to see if she had any ideas, with a photo indicating the affected area. She had some very specific thoughts (including technical medical language) and thinks I need to see Andrew asap. I then emailed his secretary with what she said, and she is so patient with me, bless her. I am sure I am a nuisance but having been dealing with this for over ten months, I just feel I have to push all the time. She and the appointments lady are on the case and as soon as Andrew is back he will see all the emails and I’m sure there will be discussions. 

This afternoon, I have been doing Christmas crochet and watching The Blacklist. I am nearing the end of the first season now so it’s all getting rather tense.

The 22nd & 23rd; Small victories.

The 22nd of October. 

Inside my elbow hurts so much. I didn’t have the compression garment on yesterday because Mommy wasn’t in and I wasn’t going to teach Daddy how to put it on. So today it’s been back on again and oh god it is so tight. I just need to keep it on; I’ll get used to it again.

Similar day to yesterday. Good night. Mostly crochet, in my chair. Watched Sunday Brunch, did a blog post. Won’t be watching next week, not unless I’m desperately bored. Just nobody of interest on at all. 

Crocheting something for a different project – can’t carry on with Heidi’s until the extra wool arrives. What I’ve worked on today might have to be done again, depending on the size of the next part I make. It’s a complicated equation involving different wools and hook sizes. 

Last night we ate the ciabatta and focaccia. The brioche got baked today but sort of got accidentally cremated so they haven’t been so good. Have to try that again and watch the oven a bit more closely. 

The 23rd of October. 

Well, tomorrow is off. It’s so frustrating. 

I spent my morning waiting for Michelle, Mr. Titley’s secretary, to phone me to tell me what exactly need to do tomorrow. I was going to give her until eleven, then ring her, but at 10.55 my phone rang. It was Stella, Dr. Richter, the immunologist’s, secretary. She was calling to offer me a cancellation appointment tomorrow afternoon, which I had to pass on because I didn’t expect to feel up to it. I then rang Michelle, and she told me that actually, they weren’t sure if tomorrow could go ahead, because I haven’t seen Dr. Richter yet. How fucking ironic. She said she needed to talk to Mr. Titley to know for sure, and she’d ring me back.

When she did, it was with bad news. No surgery. They booked me in with the hope that they’d know what was happening with my white cells by now. But we don’t. So she’s going to book me in for his next pre-screening clinic on the 22nd of November, when he comes back from holiday. 

I rang Stella back in the vain hope she hadn’t found someone else for the appointment. Of course, she had, and then I got a bit upset and explained how nothing I need doing can move forward until I see Dr. Richter. She agreed to try and squeeze me in it she could, and I left it with her, not feeling hopeful. But sometimes I can be surprised. I think a slot has been made for me at the start of the clinic, because I’m booked in for 2pm. Small victories.

The 16th & 17th; Why is nothing ever simple?

The 16th of October. 

Started my day with a phone call from Shaki. She was outside, about to put some paperwork through my door, but didn’t want to come in because she has tonsillitis, bless her. Poor us. 

Once dressed, I got downstairs and promptly chucked my water over the table in the living room. This meant I had to take everything off it, including the heavy glass top so the embroidery underneath could dry. Well done me. 

I rang Emelda to discuss my next appointment with Andrew, but found out she’s on annual leave. Rats. I’ll try Christine, the appointments lady, again tomorrow. Then I wrote up a blog post, trying to ignore the apocalyptic light that’s been over us most of the day. 

Lunch, then sat here crocheting a cowl most of the afternoon. Suddenly it was half past four and we had to go to the chiro for my rescheduled appointment. I knew it was going to be painful, but necessary. The muscles that go up either side of the spine had contracted so no wonder I’ve been in more agony than usual. Plus lying on my front on that floor has been bad for my neck so it was a generally unenjoyable visit. 

I also spoke to a lymphoedema nurse because I’ve not been able to wear my compression garment today because it has made the skin on my elbow raw due to it being so tight. Going to try another brand. Why is nothing ever simple?

The 17th of October. 

This is exhausting. I think last night was better? The cough has been pretty similar today – I’m still bringing up phlegm the same colour as before so I emailed Dr. Thompson again. Today is the last day of the co-amoxiclav, and the last sputum sample I gave was essentially spit so obviously it hasn’t grown anything. Anyway, he wants to leave it a few days and we’ll see how I am. 

Spoke to St. Giles again and they want me to have a made-to-measure sleeve, so I’m being measured for that on Thursday. Also spoke to Mr. Titley’s secretary because I haven’t had my letter about Tuesday yet. She said one has been sent, but if it doesn’t arrive by Thursday I’ll be ringing her back. I do need to know what time to turn up etc. This cough better have fucked off by then too or we’ll be in trouble. 

I spent my afternoon watching stuff on Now TV and crocheting the cowl. It’s finished now. I watched the Nashville concert at the Royal Albert Hall and got emotional at Stand Up because it reminds me of Dean. I miss my friend.