Archives For February 2017

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.

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 16th of February. 

We have a plan. In fact, we have many plans! I got called in pretty much straight away again (I do like the promptness of Andrew’s clinic) and first off, he was really very annoyed that I hadn’t heard from the compression garment people, so he fired off what I think was a politely passive-aggressive email immediately. I went on to explain how it’s affecting my breathing and mental health, and I didn’t cry, but I wobbled. He went back into my pictures, and we talked about my contrast allergy again. I showed him the pictures of the rash and he agreed that I cannot have the iodine-based contrast, so we have four other options available: carbon dioxide, which they would watch displace the blood, measuring the pressure in the veins, the gadolinium (the MRI dye they usually use on me) and IVUS, which is intravascular ultrasound, where they put an ultrasound probe inside the vein and get pictures that way. Then it really depends on what they find, but he’s going to try to sort it out asap, because he now understands how debilitating it is for me. We have to wait for him to talk to the people who make IVUS because it’s not a standard going they have in the hospital. I left feeling much better. 

Then, on the way out, I got a call from the compression garment people! They were very apologetic and asked if I could go there right then, so we turned right back around. I went to the orthotics department and booked in with the receptionist. Again, I was called in super fast, and the nice man took lots of measurements of my arm. He’s ordered it today, and has asked them to get it sent out express, so I’m hoping they’ll call me back early next week? I have to wear it 24/7, so that will be fun. 

Afterwards, we went back to Andrew to let him know that it had happened, and he was delighted. Polite passive-aggressiveness works!

We went into town so I could get Penny a birthday card, then by the time we got home, I was starving. Lunch was most welcome. Then this afternoon, I watched the series finale of No Offence, and worked more of the complex, fine wool doily. Hand cramp ahoy. 

The 17th of February. 

Well, I have my compression garment. It is not my favourite.

I got a phone call just after eleven from Chris, the guy I saw yesterday. My sleeve was in, when could I go in to collect it? I suggested two o’clock which he was happy with, and I hung up still in shock at how quickly it has happened. 

We went out straight after lunch, and were waiting for a little while but kept amused by the nonsensical rolling news along the bottom of the screen (“Armed with a machine to pick cows up and an angle grinder, man gives cows pedicures.” “A nationwide depot search was conducted but the painting was never found.” “The club described the player as having a contagious energy and sense of humour which lit up a room.”). 

After twenty minutes, he came to get me, and proceeded to fit the sleeve. I do not look forward to us having to do it – it’s so much harder than the TED stockings. He said the most common injury in their department is ruptured fingers – dislocated knuckles and torn ligaments from pulling garments up people’s limbs. I have to wear it all the time except in the shower. God. 

Once it was on and in the right place, we went into town again to take back a jumper I’d ordered (did not resemble website photo), and I got a different one which will also go back because the arms aren’t big enough. 

This evening, I was out at The Old Rep to see Josie Long, supported by Tez Ilyaz. There was little traffic, so I arrived ridiculously early. To fill the time, I got myself a glass of wine and read the little programme Josie had made. When the doors opened, she was doing pre-show karaoke, which was basically her singing along to the Pina Colada song on her phone. Such fun!

She did a bit, then Tez did his bit (which was very good, I am going get tickets from him at Machynlleth), then it was interval time. I had to pee, and on the way to the toilet I saw Malcolm, who I used to hang out with back when I was at school and was one of the photographers at Becky and James’ wedding. Then, when I came out, I was recognised by Bryony, a nurse from the QE who I love dearly and haven’t seen for ages. Bonus, unexpected chat, so that was an added delight to the evening. 

Josie then came on and did her show, and I just love her. She is such a font of positivity and optimism but also rage, which is what we need when the world feels so terrible. She ended on a high note of an audience sing-a-long to Take That’s Never Forget, and as people filed out they all wanted photos and to talk which she gladly took part in, and I climbed up the stairs to the stage so we could catch up. I met Tez, and Josie’s boyfriend Johnny, and we talked about the show and Mach. They tidied up the stage, removing all her banners, and we ambled out of stage door where there were still some very dedicated fans waiting. 

I am not looking forward to sleeping with this thing on my arm. 

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 12th of February. 

Really tired, although I really have no excuse to be. I slept all night, whereas Mommy was awake at four. I did have a dream that someone murdered me with an injection to the back of the neck, and that woke me up at about one. I could physically feel where the needle had been. So not a great sleep. 

This morning, I wrote up a blog post, then watched Sunday Brunch in my pyjamas while I finished crocheting all the parts of Carol’s present, ready for assembly this afternoon. 

After a lunch involving the cake Mommy made before I even woke up, I thought I should probably get dressed. Then for the rest of my afternoon, I sat in front of the rugby while I put my crocheted creature together. I feel the same way about rugby as I do about Gardeners’ Question Time – no idea what they’re talking about, but I find it very soothing. 

Mrs. Doubtfire is on this evening, and it’s been so long since I saw it, I had forgotten how tremendously excellent it is.

The 13th of February. 

No dreams about being murdered last night, and Mommy woke up at five instead of four, so that’s progress. 

We have both had very productive days, although in rather different ways. It’s been decided that the dining room needs decorating (to be fair, we’ve lived here my whole life and only had one new carpet) and of course I am not getting involved, but Mommy has removed the paper from two of the walls. 

I have made a large doily. 

That might not sound very impressive, but it took several hours and was pretty complicated so well done me. I don’t know what I’m going to do with it. One of the pattern websites said that a doily is one of the best heirlooms to leave for your children, but seeing as I won’t be having any descendants, that’s kind of a moot point.

So, that’s been my day. Oh, I finally got an appointment with the pain team! End of March, so six more weeks of agony. Then maybe I will get some relief.