Archives For arms

The 14th of July. 

I have not really felt up to participating in life today. Not quite under the heavy cloud, but definitely not feeling myself. 

I didn’t have a great start to the day; up early again for the dentist this time. I saw the dentist first, and that was fine, but then I saw the hygienist and it wasn’t my normal one. I did not like her. She was very against me using a manual toothbrush or floss picks, and she was adamant that the kids’ Sensodyne Pronamel toothpaste isn’t minty (it definitely fucking is) and wouldn’t listen to me when I protested. She said I had loads of plaque, then cleaned my teeth really aggressively and painfully – there was blood all over my face and bib which has never happened before. She really didn’t seem to care about my history, or the fact that in all the time I’ve been at this practice and seeing Mrs. Richards, nobody has felt that I had any problems. I was very glad to get out of there. When I had to rebook, I made a point of making sure it was with my normal hygienist. Not seeing that woman again. 

Got home where I could finally have my coffee (no time before I went out), and I rang the lymphoedema clinic that has been recommended to me. They said I needed a referral, so on Monday I’ll get a consultant to write a letter. 

The rest of my day has been spent looking for something to wear on Tuesday. Fuck my arm. If I weren’t right-handed, I’d have chopped it off. 

The 15th of July. 

I am so tired. Another bloody early start for another morning appointment. This time it was to see the eye man at the QE. They were not running so on time today, so my 9.50 appointment ended up being more like half ten. Still, it was good news – said they were the best he’d seen them, which would certainly tally with how I feel. I can cut out one eye drop, so it won’t take so long to go to bed, and he’s prescribed something that might be better than Hyabak. 

Got home about twenty to twelve, and the stuff I’d ordered from ASOS yesterday had arrived. I’d sent for a couple of shirts and a dress. I’m definitely keeping at least one shirt, not sure about the other, and the dress is going back. It’s too dark for me. Shame. 

This afternoon, I listened to the tennis while writing up the venoplasty blog post, and I’ve been to pet the kitties a few times. There is interest in Bree but I really need Betty to go first, or she’ll freak out of she’s alone for the first time in a new place. Bah. 

Finally finished that doily I have been working on. I think next I will do some things for the new babies that are coming soon – Peter and Sophie’s, Michaela’s, and Robyn and Stu’s. All the babies!

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 20th of February. 

I so want to be able to breathe normally again. Or at least, normally for me. To walk from the living room to the kitchen without needing to recover, to not need to spend the first hour of every day coughing up endless amounts of crap. I suspect Andrew won’t be able to get me in next week because he’ll be only just back from half term, so I have to be patient. I am just so tired. 

I spoke to the orthotics team this morning and I’m going in tomorrow at 9.30, presumably to be measured for a sleeve that goes over the hand. 

The rest of the day, I have been waiting around for Mommy to be available so we could bake brownies with the triple double chocolate Oreos in. At one point, we almost got started, then there was decorating chat, then Alison came over, so an hour after going to the kitchen, we began. I made sure we cooked them for the full amount of time, so hopefully they won’t be underbaked like usual. 

Good news! NHS England have announced they “are confident” that funding for second transplants will become available, but this is not yet confirmed. It also begs the question of what the hell has the anguish of the past six months been for? The pressure is not off. 

The 21st of February. 

I think the steroid eye drops are working – I had to wake up at quarter to seven, and it took much less time for my eyes to adjust to the light. Hooray!

Up early to see the orthotics team – Chris is on annual leave this week so I saw Pete, the clinical lead. I explained what had happened and showed him the pictures. He took some more measurements (and was pleased I had worn a jumper with easy arm access), and with any luck, I’ll be able to pick up the new sleeve tomorrow after haematology clinic. 

Before going home, we went into town so I could return the jumper I bought the other day, and I got a birthday card for Mommy. Her present is on its way, so if it arrives in time, I’ll wrap it on Thursday while the dining room is being painted and the fumes will force me to retreat to upstairs  

This afternoon, Daddy and I went to see Hidden Figures. It is really superb. I adored all of the costume, especially Janelle Monáe’s dress at the beginning. Loooove. I read an article about the three women (Katherine G. Johnson, Dorothy Vaughan and Mary Jackson) in New Scientist a few weeks ago, and have been really looking forward to seeing it since then. I can’t believe I did not hear about these women until now. And I am worried that we are going back to the time they came from.

 

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.