Archives For compression garment

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 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 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 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 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 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. 

The 2nd of October. 

It is just relentless. Doesn’t stop. Don’t know what time I fell asleep. It was after Daddy got home, past one. 

Everything hurts. Both shoulders, all of my back, my ribcage. The only way I can suppress it is to lean forward, but that makes my back pain even worse. Thank god I’m seeing the pain doctor tomorrow. 

I went to St. Giles today to get a new compression garment. I met Jane, who is the one that works with Anne Dancey. She looked at a few different sizes, but actually the first one fitted. I’m not loving it – I forgot how squeezy they are. I’ve got to ring them in a few days if it’s okay and they’ll get the GP to organise a spare one for me. 

Henrietta is going today. She is not getting any happier here, so Shaki is going to take her back to the colony from whence she came. She’s well now, and has been spayed so can’t get pregnant again, so this is the best thing for her. She is not destined to be a pet.

The 3rd of October. 

My chest quietly rumbles on. If I’m not coughing, I’m burbling away. 

I think I had a slightly better night – I don’t think it took me quite so long to fall asleep. Not that it’s helped much. Still just coughing up phlegm all day long. It’s funny, the cough is so loudly phlegmy, yet people still offer me water like lack of moisture is the problem. It is quite blatantly not a dry cough. It happened while I was waiting to be called through in pain clinic this afternoon. Like I will drink the water and be like HALLELUJAH YOU HAVE CURED ME!

Speaking of pain clinic, Dr. Blaney does agree that steroid injections are the next step, as any stronger drugs are all opiates that will probably affect my breathing. However, he doesn’t want to do those until we know why my white cell count is consistently high. I get it – if we introduced infection into my spinal fluid, that would be a problem. So now we have to badger the secretary of the immunology doctor, and she’s not back until Thursday.