Archives For compression garment

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. 

The 26th of September. 

Ughhh. So much phlegm. Bad night, full of coughing, sneezing, bleugh. This morning I wrote up a blog post, then it was time to try on more jumpers. Yes, more jumpers. I don’t know when this saga with my arm will end and Zara have an abundance of large-sleeved clothing so I’m taking advantage. I do at least know that I will be getting a better compression garment on Monday – Jemma from St. Giles rang and said she’d spoken to Andrew, who says it’s fine to have one, so maybe one that fits properly will actually help?

This afternoon, I’ve been crocheting the first of my little wintery chaps, Woody the Pine Cone. He is adorable, but he still needs some arms. 

It seems Christine is poorly too. She is also on the Strepsils and doing all the coughs. Hopefully she is tolerating it better than I am. Stupid germs! I’m pretty sure it’s just a virus, not bacterial, as the phlegm that’s come up hasn’t been green and it can’t be the pneumonia again because then the phlegm was too viscous to move. 

I miss Dean a lot today. I keep expecting to see his name pop up on my phone screen, thinking of things I want to tell him. Maybe it’s finally hitting me. 

The 27th of September. 

Another bad sleep, but I’ll just have to expect that while I’m ill. My throat was less sore, but that’s probably because I was awake in the night and had Strepsils. 

I think my nose is less runny today, but the coughing is much worse and more painful because all my ribs and muscles ache. Christine went home at lunchtime today so she is obviously not feeling great either. 

More crochet and TiVo. I finished Woody and started on Simon the Snowman, who currently looks like a tooth. The wool I had ordered to make Chloe’s seal came today so I can do that next. Can’t believe I had run out of light grey. 

I had a break from the crochet when we went to collect the kitties from the very after their neutering, chipping and vaccinations. Henrietta is sulking but the kittens are fine. We’ve got a couple coming to see them tomorrow and there’s no way they won’t fall in love with them so I’ll probably have to say goodbye soon. 

The 18th of September. 

Very busy morning. An apt start, considering the rest of my week. Start as one means to go on. 

Shaki was concerned about Henrietta after I’d told her about our lack of progress with her, so we took her to the vet. The only time they could offer was 11am, so I finished up my coffee, then we had the fun job of trying to get Henrietta into the carrier. Basically we chucked a lot of Dreamies in there and shut the door. She did not like it. 

At the vet, she came out and slunk around the floor, hiding under the table, behind the bin, behind a pile of boxes, hissing at Daniel. He eventually cornered her with a towel (like a matador), and gave her an injection of long-lasting antibiotics. She wasn’t going to allow anything else. She even did a couple of protest poos in the corner. She’s been in the dog cage since we got back, because Shaki wants to come and see her this evening. Hopefully the antibiotics will make her feel better, and she won’t be so angry all the time. 

This afternoon, I’ve been doing Cats Protection admin and watching Bones, while looking at my new crochet book that arrived today. It’s full of mix and match dolls so I can make people! Already got one commission. Better get some flesh-toned wool. 

The 19th of September. 

This morning was lymphoedema clinic. Mommy and I set off to Lichfield for ten, and when we arrived at St. Giles, there was a little bit of waiting around before I was called through. I met a nurse called Jemma, and I had to explain my history to her, paying particular attention to my past episodes of swelling and the timeline. We had a very long conversation, and because of the SVC narrowing, their protocol doesn’t allow them to fit me for another compression garment. She did measure me, in case they can give me one in the future, and it was interesting to learn that the right arm is 37% bigger than the left. So no treatment today – it really is all up to Andrew for now. 

We got home around lunchtime, so we ate, then Mommy went back or to Grandma’s. I went upstairs to sort out stuff to take to London tomorrow while I listened to the new episode of The Bugle. I think I have everything sorted. Just have to chuck it all in a bag tomorrow morning. 

Tonight I am out at The Glee seeing The Horne Section. My first of two consecutive nights out in a row. Getting ready to be exhausted.  

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The 12th of September.

Today has been fairly acceptable, pain-wise. I had to bend over this morning which my back didn’t like, and I’ve had the occasional twinge, but moving has been much easier. I had a longer sleep, which I think helped too. 

Quiet day for me; this morning, I wrote up a blog post, and tried on two dresses that I had ordered. Keeping one, sending the other back. Chatted with the kittens. I think bribery is working on Hugo, as he’s not running away from me quite so much. 

After lunch, I perused some crochet patterns and did some experimenting with different sized hooks, eventually deciding to just make a scarf/snood with some wool I bought to get free delivery on an order. I watched some Bones, then went to sit and give Hugo treats while I stroked him. He’s getting better at it. Even Harvey wanted to come and join us watching Buffy, although he doesn’t care about Dreamies. 

The 13th of September. 

Well it’s been a rather productive day. I saw Anne Dancey this morning about my arm. I explained my situation, and my history, and she examined me. She was pleased to hear that Andrew is organising this nuclear medicine test, as she would do something similar, and would like to see the results when they come through. Let’s hope the appointment materialises soon. She thinks it is probably vascular, but that a proper compression garment and seeing specialist nurses will help me, so it’s handy that I’ve got St. Giles (who are the same team she uses anyway) next week. If I do need lipo, she will provide it, but I have several other avenues to try first. 

We popped into town before going home, to take back two of the three coats I’d ordered from Zara, then had to get straight back home so Mommy could get to Grandma’s for 12. 

This afternoon is used up a second ball of wool on the scarf, so that’ll be done by the weekend, and I had a bit more Hugo petting time while listening to PM. I think we’re making progress. Henrietta, not so much. 

The 24th of February. 

Ugh, I feel like trash. Have done all day. I had a bad night, and got woken up early by the man who came to fit the carpet. Joy. It took longer than usual for me to get up and dressed, because I kept having to stop to breathe extra oxygen. 

Since then, I’ve kind of felt like I’m suffocating all day, so am trying to do very little. I can’t get a deep breath in, and neither my inhaler nor extra oxygen have helped. Just have to hope that a good sleep tonight sorts it out. 

Three good things to mention: the compression garment hurts less today, Christine has come home for the weekend, and NHS England have committed to definitely routinely funding second transplants! Finally, someone in there saw reason/had some compassion and the funding has been reinstated. 

The 25th of February. 

Breathing is very difficult and it is making life very tiresome. I am back at the stage where I am no longer capable of washing my own hair because the activity is too exhausting, and the shower is one of the few places I cannot take the oxygen. I have been able to take deep breaths though, so there’s that. 

Compression garment is back to being painful. Obviously yesterday was a fluke, worse luck. 

Had a really exciting afternoon – did my Cats Protection admin, which involved taking cats who were adopted last year off Catalog. Basically inputting all the microchip and neutering data, and all the adopters’ details. Really, very thrilling. Then, while not paying attention to the rugby, I worked on a new doily. I am such an old woman. 

This evening, we have been out to Tom’s Kitchen at The Mailbox for Mommy’s birthday (which is tomorrow). It didn’t start off brilliantly because Daddy insisted on parking on the street, so we got wet going in, then the disabled doors were broken, so we had to carry my wheelchair up steps to get inside. So I was annoyed, but then I got over myself. I had to have the truffled mac’n’cheese to start, because it is ridiculously delicious, then I had roasted pollock and pea risotto, and that was also excellent. I had no room for pudding though, and was very ready for my bed when we got home. 

The 22nd of February. 

New compression garment in place. Still not a fan. 

I had haematology clinic this morning, in the old hospital while the usual building is being refurbished. It’s not ideal, and it think they’re still getting used to it, but it wasn’t horrendously busy when I got there, so it was okay. The nurse said my weight out loud, and I made the foolish mistake of converting it from kilos to pounds which has freaked me out. Bah. I saw the reg that I saw last time, and all he really had to do was sort out my prescription for the next three months. 

We took it over to pharmacy, then went to check if my compression garment was in, but it wasn’t. Dean was in, starting a cycle of chemo today, so Mommy went to get a coffee and I went up to YPU to say hi, although I ended up being there nearly an hour, I think! By then, my prescription was ready, so we picked up my three bags, and were about to leave when my phone rang. It was the orthotics department! The lady who rang was obviously not familiar with my situation, because she said the sleeve was in, but then asked me to come in on Tuesday? I said no, I’m here now, and Pete said he would fit it today. She wasn’t keen on this and said she’d check with him and get back to me, but I just went there anyway, where I was welcomed. I had to wait for him to finish with a patient, then it was my turn. This one went on a little bit easier, although it’s still really tight on my elbow. Really not my favourite.

This afternoon, I’ve been avoiding the decorator man hanging the wallpaper, and stretching out my sore arm. This better be worth it. 

The 23rd of February. 

This is not going to be an exciting one. Obviously, the insane weather has imprisoned me inside all day, although thankfully I have not been gassed by paint fumes. 

No, my problems today have been fourfold – my ribcage is upset again from coughing, my breathing is depressingly terrible, and the compression garment is excessively squeezy inside my elbow and in between my forefinger and thumb. Lots of discomfort, no respite. 

I had planned on doing lots of Cats Protection admin today, but Daddy decided that in order to paint, he had to turn off the internet. I know that doesn’t make sense, but that’s what happened. 

I have therefore spent my day on my own, crocheting the current doily and watching random crime dramas. I had a break when I went upstairs to wrap Mommy’s birthday present, which was much larger than I expected. I am not entirely sure where she’ll put it. 

Oh, and I had a phone call from one of the nurses at the QE – apparently my CRP (infection marker in my blood) is 47 (which is high – should be less than 5), and she was just checking whether I was showing any signs of infection? Well, apart from the cough I’ve had for weeks, no, so that’s hopefully not something else I’ve got to look forward to.