Archives For arms

The 18th of February. 

Well, that did not last long. I had the compression garment on all night, as advised (and slept terribly as a result) and it had squeezed loads of the fluid into my hand, so much so that I couldn’t really make a fist, because even my palm was fat. I’m pretty sure this is not how it’s supposed to work, and it was not reasonable for me to keep it on, so Mommy wrenched it off and I’ll ring Chris on Monday. I think I just need one that goes over my hand instead of stopping at the wrist. 

Most of the day has been pretty quiet – it took me a while to write about yesterday, because it hurt my hand to hold the pen and I kept cramping up. I spent a lot of time trying to force the fluid out of my hand, back into my arm because at least when it was there, it didn’t hurt. 

Had to go out just after two, because I was needed at three to speak at the Marrow RAGM at Birmingham University, and had to stop at Jen’s on the way to pick up some Cats Protection paperwork.

The instructions I’d been sent on how to get where I needed to be in my chair were excellent, so I arrived in-between workshops and I got myself settled in the corner with a coffee. I read through my talk again and made some final edits, then I listened to the rest of the workshops. When they were finished, all that rest of the group joined us, and it included my friend Ellie who I met at Find Your Sense of Tumour a few years ago, and Jess from the focus group the other week! Happy surprises. Then it was my turn to talk, and that went fine – they paid attention and laughed when they were supposed to. There were a couple of questions, and I stayed for a bit of chat before taking my leave. Good day!

The 19th of February. 

Writing with hand cramp again, but today it’s because I’ve been crocheting with a tiny hook and tiny wool for too long. 

I had a much better sleep without the compression sleeve, and my hand is now back to its normal size, the fluid having redispersed into my arm. Still, it won’t last long, as I’ve got to ring the hospital in the morning and get us back on track. If Andrew’s doing his best to fix me, I need to do my part too. 

This morning, I got the blog post I should have done yesterday done, and found that all the skin on my feet is ready to peel off. It usually happens some weeks after GvHD, so it’s just that part of that cycle. They now require a lot of moisturising. 

After lunch, both parents were off doing decorating things, so I allowed the football to witter on while I crocheted. After a good three hours, three of the fingers on my right hand have decided that they’ve had enough. As much as I’d like to finish what I’m working on, I don’t need to cause myself pain. 

The 14th of February. 

Another Valentine’s Day without a media campaign, another day of no cards. Back to normal. 

Back at the chiro this morning, just to top up. I needed some work in the ribcage area still, but I can now take a deep breath without it hurting, which is always preferable. 

When we got home, I had time to write up a blog post, then Rosemary arrived just after twelve for one of the semi-regular lunches that she has with Mommy. While Mommy heated up the soup she made this morning, I explained what was going on with my arm, and all the various health issues I had over Christmas. 

This afternoon, I watched Katherine Ryan’s Netflix special, In Trouble, and crocheted just a small doily. No time for an all-day project today. I have ordered some crochet thread so the next ones I make will be not as large as the ones I’ve made so far. 

I just want it to be Thursday. I had a dream last night that I was going to have another venoplasty, but they cancelled it at the last minute because the door of my cubicle didn’t lock, and I was so angry. I can’t carry on like this. 

The 15th of February. 

My hand aches from all the writing I’ve done today but here I am again because needs must. 

I was woken up by Mommy stripping wallpaper in the dining room. Somehow, the sound travels directly up so it sounds like she’s doing it in their bedroom which is next to mine. Not the start to the day I expected. 

My breathing was pretty poor this morning, to the point where I needed extra oxygen after my shower. I really don’t know what I would do if I didn’t have it. After breakfast, I made another coaster/doily for Penny because she liked the grey one I did and it’s her birthday next week. Also, the crochet thread I ordered arrived, so I can make smaller, fiddly ones. And I got the new mug I purchased to replace the one Daddy broke yesterday, which is very speedy delivery!

After lunch, I sat down to plan my talk for the Midlands Marrow RAGM on Saturday. After two hours, I’d written five and a half pages, which I will have to practise to see how long it takes. I have twenty minutes, but that includes Q&A so I need to leave enough time for that. 

Clinic in the morning. Begging time. 

The 8th of February. 

I am so tired of spending every morning coughing, over and over, having to bring up crap from my lungs repeatedly. It takes hours to subside. I haven’t got an appointment for Andrew’s clinic next week yet, so tomorrow I’ll have to ring the lady I spoke to last week again. 

It’s been another rather nothing day. I have crocheted two coaster-type things, although they’re a bit big so are more like doilies. I am a grandma. 

We watched another episode of Case – it’s only on All 4 so we have to be proactive in watching it, otherwise we’ll forget and I do want to know what happens. I find it difficult to tell all the blonde Icelandic girls apart; they all look so similar. There’s another, similar drama starting soon called The Team so hopefully they’re different enough for us to keep them separate in our minds. 

Nothing else. Just want to be back to normal size. I’m doing a talk for some Marrow volunteers next week and it would be so nice if I didn’t have to wear an enormous jumper but I suspect I will. 

The 9th of February. 

So it seems 2017 is the year I become a pensioner, as I’ve made about five doilies in the past two days. They’re my new scarf – when I’m bored and have no larger project, make a coaster/doily. 

This morning, I made a purple coaster, and this afternoon, I did a larger, doily-type one while listening to 69 Love Songs by The Magnetic Fields. They have such a wealth of material, I wish I’d known about them back when they might have toured. 

I had several phone calls to the hospital, trying to make sure I was going to get an appointment for Andrew’s clinic next week. I talked to the lady from last week, but she had no paperwork about me, so then I spoke to his secretary who was able to sort it out very efficiently and I’ll be seeing him next week. Apparently the compression garment people have me on their list as needing one urgently but still no idea when that might progress. 

This evening I had another Cats Protection meeting, although this week’s was not as long and I have no jobs to do. I am good at being the host, providing biscuits and doing admin. 

The 6th of February. 

Late night, and I spent my morning writing about yesterday, then writing it up in a blog post. We had phoned the chiro to see if I could go on the list for any cancellations, and Sandra (the receptionist) rang to see if I wanted an appointment at three. I said yes please, very much so!

This afternoon, I spoke to the person who does appointments for the pain team, to see when I might expect mine. It turns out they only got a referral for me in December, which is the one I asked Charlie Craddock to make when I saw him in clinic. She confirmed that it was a referral from haematology, which means that Spencer Harland never even bothered. I have spent months waiting for an appointment which was never going to materialise had Charlie not got involved. It’s a twelve week wait, so I’m looking at March maybe? It should have happened in January. Fucking furious. 

Needless to say, Trine was quite shocked and appalled. She can’t do anything, but she could help sort out my angry ribcage. A serious amount of kneading and stretching was done, and she told me not to be surprised if I bruise. I don’t mind, so long as my bones stop grinding together.

The 7th of February. 

A most unproductive day. My skin is doing its occasional “have some spots in awkward places” thing and because I am blessed with good skin most of the time, this is completely unacceptable. I’m really very grateful I don’t have to go anywhere this week and worry about concealer. 

I’ve given up on the sock I was making because I got to a point where the pattern confounded me so I’ve unravelled it all. One day I will find a sock that I can make! I practised some other crochet and unravelled that too, typed a pattern up so I don’t have to get the magazine that it’s in out every time I want it, and put a recently adopted cat in the Cats Protection database. SUCH EXCITEMENT. 

My arm has actually gone up another centimetre. I now look at my left arm and think it looks almost withered when it is the normal size, it’s the right one that is insanely large. I really don’t know how much good a compression garment will do.

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

The 31st of January. 

Well, I’ve spoken to the person who books appointments for Andrew’s clinics, and she can’t do anything until she’s spoken to him. I don’t feel ultra-confident that she will do this very quickly but hopefully she’ll surprise me. Still no sign of deflation, and I am measuring it every day. 

I have been vastly unproductive today, apart from a blog post this morning. I was at the chiro this afternoon for the first time since before Christmas, and it was not fun, but very necessary. I know it’s bad when Trine winces upon touching my back, exclaiming about how it feels “solid”. She did lots of kneading and crunching and stretching, and I’m going back in two weeks. Hopefully I will not be in pain when I try to go to sleep tonight like I have been for the past week. 

Afterwards, we had a very quick trip to Sutton so I could get a box file for Cats Protection post-adoption forms, and while there bumped into June from Black Sheep, so had a tiny chat before she had to get back to work. 

Need to decide on my next crochet project. Mindless hooking is my meditation. 

The 1st of February.

I have been surprised! The lady I spoke to yesterday actually rang this morning – she has seen Andrew and he’d like me to go to his clinic tomorrow, which I can definitely do. Still exactly the same size. 

The rest of my day has not been so great. I needed oxygen after getting dressed, have been coughing all day, and my back still feels stiff and painful. Stupid garbage body. It would be nice to be able to complete basic tasks without feeling like I’ve just sprinted 100m. 

I had been considering a new crochet project, and as we are meeting Naomi for lunch tomorrow and it was her birthday the other day, I thought I would make her something. I had seen a pattern for a cute bunny, so I’ve spent my day making that. It is super adorable. 

The 29th of January. 

My arm has not gone down at all. I think we’ll be phoning the booking co-ordinator in the morning, not to actually arrange something, but she might be able to help us work out how to proceed. What’s ridiculous is that I will probably be able to get this surgery relatively easily, but if I had an aneurysm or something, it would be a lot harder to pin down. 

This morning, I stayed in my pyjamas and blogged. I had Shreddies for breakfast for the first time since my mouth flared up, and they’re not as good as I remember. Might have to rethink my choice of morning meal. 

Most of the day, I’ve wanted to just retreat from the world because what Trump has started is so bad already, and I am sickened that there are people who think he is right. Disgusted by the actions of our unelected Prime Minister. The only heartening thing is the amount of people protesting, who refuse to submit. I hope he does come for a state visit, so he has to come to a city to a Muslim is the mayor and see the thousands of people who will not stand for his new brand of fascism. 

The 30th of January. 

No arm progress. I made some phone calls but by the time I got the number of the woman I need to speak to, she had gone home, so I have left her a message. I’m having a minor panic because my jeans feel tighter around my right leg today and I can’t tell if I’ve gained weight or if my leg has swollen up. I can’t use the scales to check because they can’t be relied upon while my arm is the way it is. Ugh.

I had a mini Cats Protection meeting with the homing team this morning to discuss some creases that need to be ironed out. It was meant to be just a brief chat, but turned into an hour and a half discussion. We did at least make some decisions and I’ve got one job to do but it’s not urgent. 

This afternoon, I did some CP adoption admin, and Mommy and I watched the first episode of Case, a new Scandi-Noir on Channel 4 that has already drawn us in. My copy of The Good Immigrant arrived, which I bought with my Amazon voucher that I got for participating in the Anthony Nolan group on Thursday. Really looking forward to getting into it. Also I am greatly enjoying the photos from the Birmingham anti-Trump protest – wish I could be there but it’s not advisable. I cannot afford to get sick.