Archives For qehb

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 10th of September. 

Today has not been so terrible, in terms of pain, but I have still felt pretty shit all day. 

I’m still tired, from not sleeping properly due to pain, so I got up just before the start of Sunday Brunch and got dressed in a cosy jumper and leggings, because the weather demanded it. 

I have, again, not moved a great deal, but also have not crocheted at all because I just can’t concentrate. I thought, after lunch, that I might need a nap, so I went upstairs to lie down. I put on a podcast, curled up and closed my eyes, but I did not fall asleep. This is good; it means I am not ill! Just feel shit because I’m tired and in pain. Preferable. 

After coming downstairs from my rest, I watched three episodes of Bones that had appeared overnight, and tried some Hugo petting. I forced him on to my lap and stroked until my arm was tired. He must learn to enjoy it. 

The 11th of September. 

Another early start, but for a good reason. I met up with Adam this morning, because he’d come up to the QE to talk to some of the nurses about stuff Dean wanted to do. It was really good to see him and give him a big hug in person, as opposed to verbally via direct messages on Twitter. We talked about how it had been in the last couple of weeks, and at the end, and his incredible appearance on Victoria Derbyshire. How he’s coping, how I am. There are things that are being planned in his name that I am looking forward to seeing. His legacy will live on. 

He had to get going up to YPU, and I had to go home for lunch before my chiro appointment. Trine has managed to make me feel some relief – it appears one of the muscles on the right side of my back had gone into spasm and travelled all the way up (or down, I’m not sure which end it started) which meant all of that side was contracting. No wonder I was in pain. She managed to work some of it out, while I gritted my teeth. Thankfully it hadn’t transferred into my neck, so I just needed some ice pack treatment when I got home. 

Since then, I have crocheted some mice for the kittens to play with. Henrietta has appropriated an old one which is incredibly tatty, so now they have some more that aren’t falling apart. 

The 6th of September.

I am sleepy. Awake early for haematology clinic. We arrived at ten, and left at one. For once, I cannot complain about not getting enough of my book read, because that it all I did for nearly two hours. Charlie called me in, and to be honest, he hadn’t got much to do for me, just prescribe all the drugs, and he’s referred me to an immunology clinic to see how well my immune system is functioning, so that’ll be interesting. 

We got to pharmacy just after twelve, and then went to get coffee and sat around for 45 minutes, waiting for my prescription to be ready. Then a very quick trip into town; I needed another set of drawers, and Mommy decided she wanted some too, so she can put all her cross-stitching threads in them. I also needed toothpaste, and got some flat brew espresso chocolate spread. 

Finally got home just after two, and fed the hungry kittens and ourselves. Then I got to sit and crochet, while Mommy ended up taking Alison into Sutton for some errands, because with a broken wrist, she can’t drive or carry things. Then she was off to Grandma’s! She does too much. I worry. 

The 7th of September. 

It’s a good thing I got a good sleep last night as I’m unexpectedly going to be up early again tomorrow. Rang up the dental hospital to sort out my next appointment, because no letter has come through, and after half an hour on hold, I was given half past nine tomorrow! Wasn’t going to say no, after all that. God knows when the next one might be. 

I’d ordered a memory foam cushion for my wheelchair which we needed to pick up from the sorting office, so we did that, then went to Tesco for some Stork and milk (have some baking to do). 

At home, we found that the cushion doesn’t fit the chair, which was always a possibility as we didn’t know the dimensions, so that’ll have to go back. I also received a coat from ASOS, which I am not keeping – I need something with large sleeves that isn’t the fur (too much shedding) and they’re just not big enough. 

This afternoon, I’ve done a bit more make up sorting with my new drawers, wrote up a blog post, and crocheted some more doily. 

Shaki is coming to see the cats at the weekend. We’ve made zero progress with Henrietta – she still hates me and continues to attack me, even when I am giving her treats. She is probably going to end up going to some stables and catching mice. 

The 31st of August. 

Mild improvement today? My eyes don’t hurt quite as much, and my sleep wasn’t as terrible. I suppose you can call that progress. 

This morning I had an appointment with Andrew, post-venoplasty. I showed him my still fat arm and he was very disappointed. I was surprised that he had expected it to work, frankly. The next option for him would be to put a stent in, but it would be pretty massive and made of metal, and it would stop any central venous access from my left side, which could be problematic. He has a multi-disciplinary team meeting on Tuesday with other interventional radiologists, surgeons and haematologists, and he is going to present my case to them, and see me again in six weeks. In the meantime, I’ll see Anne Dancey and the lymphoedema clinic, then we’ll see where we are. 

Popped into town afterwards where I bought some hand cream, moisturiser, and some drawers from Muji to tidy my make up area. Back home, I spent forty five minutes sitting on the floor sorting it out, which was very satisfying but very painful for my back. 

Had a breakthrough with young Hugo! I went to give the kittens some more food, and he came up to me with his brother and lay down near me, even allowing me to stroke him! I have no idea why or how, or even if it’ll happen again. I hope it wasn’t a fluke. 

The 1st of September. 

Another trip to London! This time, it was Daddy’s belated birthday present: the Pink Floyd exhibition at The V&A. Half ten train, arrived at Euston just after twelve. Train manager got the ramp for me because, quelle surprise, nobody there. We got a cab to the museum, when we met up with Christine and went to get some lunch in the café. I got a ham and Emmental baguette because everything else had spice and stuff in, then there were secret herbs in the butter that nearly made it intolerable. You think you’ll be safe!

Our tickets were for 2.30, and we had to get headphones for the exhibition (very clever, they could pick up where you were and play the appropriate audio), so we joined the queue of other organised people. We got in promptly, as did many others, so it was quite slow to get around – especially for me, as I can only move at the speed of those around me, and only see stuff when people aren’t in the way. I liked what I knew of them already, and there’s some stuff I heard that I’m going to look into more. I took a lot of photos. 

I bought two books on the way out (not Pink Floyd related) and waited for the others. They were watching the film at the end, which I had to leave because of blinding light. When they eventually emerged, we went to get coffee and cake. We decided to sit outside, which was a mistake because the wind was freezing. 

I wanted to see the Rachel Kneebone sculptures, and so Christine and I went to find those. The first one was fairly obvious, a giant column by the entrance hall, and there was a sign saying the rest were in room 21. However, once there, we could not see them. A volunteer saw that we were confused, and she went off to find out where the other sculptures were. It turns out that one of them got a bit broken, and they got taken away. She could see I was disappointed, and asked if we were interested in the Balenciaga exhibition. I said yes, but we hadn’t bought tickets. However, she said that was fine, and she’d get us in. Okay! So then we got to look around there at all the beautiful dresses. I discovered that Cristóbal and I share a birthday, and found a dress by Oscar de la Renta that I would gladly get married in. So stunning. 

We met back up with Mommy and Daddy, and it was time for us to return to our respective homes. Christine poddled off back to Twickenham, and the rest of us back to Euston. I bought some Pom Bears and a green juice for dinner, and a New Scientist to read on the way home. Pooped. 

img_8932

img_9439

img_9440

img_9437

The 21st of August. 

This summer has been such garbage. Last night I had to have my blanket on top of my duvet because it was so cold. I am wearing a polo neck jumper in the middle of August. Ridiculous. 

This morning I did a blog post which took forever to upload – I think I need to look at the app I use because I’m fairly certain that’s to blame. Spent a lot of time sitting with the kittens – still no joy from Hugo or Henrietta, they don’t want to talk to me. I think Hugo does want to explore, he’s just super timid about even leaving the cage. 

After lunch, I went to the QE to see Dean. When I arrived, a doctor was in with him, but Orlando was hanging around the nurses’ station so we went to the kitchen for a catch up. He was fascinated by my wheelchair, and I made him feel old because I told him about the decade anniversary. Dean wasn’t good – it is really hard to get his pain under control and until they do, he can’t have any chemo (if that’s what he decides he wants) or go home. He was making the small pain noise that I have made myself many a time. It’s involuntary and it means it’s really bad. I wish I could make it easier. I can’t bear to think of him like this. 

The 22nd of August. 

It would be so nice to wake up and not hear Donald Trump’s voice on the Today programme. It’s such a crappy way to start a day. Ugh. 

Morning was breakfast, bit of kitten petting and putting some crocheted goodies in the post for Peter and Sophie. We went out at half eleven because I was meeting Sadie for lunch at the Cereal Killer Café at twelve. Incredibly, she actually arrived before me. That never happens. It took us a long time to decide on what we wanted, despite us both having looked at the menu a lot online before going. I eventually went for the Chocopottomus, which is Coco Pops, Krave, and a Kinder Happy Hippo with chocolate milk, plus I had cinnamon bun cookie dough bites on top. Oh, the joys of being an adult. I am now hungry again so cereal for every meal is probably not a viable lifestyle choice. 

We had fun reviewing last night’s My Dad Wrote A Porno, her recent holiday, my new kittens and medical exploits. We also were very bemused by the twelve (ish) year old boy near us who looked like he’d been plucked from Saved by the Bell – white t-shirt tucked into some very dad jeans that were belted. He could only have looked more 90’s if he’d had curtains. 

Since getting home, I’ve had to get changed because I can’t seem to dress appropriately for the weather. It’s too inconsistent!

The 9th of August. 

Well, I had a terrible night. It took me hours to fall asleep, then I woke up multiple times, too cold, couldn’t get comfortable. It is ridiculous that in August I am having to use my electric blanket. 

This morning, after a breakfast of porridge (weather appropriate), I wrote up a blog post, then I made the last two squares of the blanket. I think twenty is enough, once it has a border as well. 

I managed to spend almost all of my afternoon looking at the squares, at books and magazines, then back at the squares, trying to figure out how to join them. Tried various ways and eventually chose one, so I’ve joined six of them so far. This part will be tedious. 

Hope I have a better sleep tonight – up early for hospital tomorrow. 

The 10th of August. 

Another weird night – ages to go to sleep, then I woke at six with a horrific headache on the right side of my head, but it seemed to abate when I lay on my left. I had to get up at seven anyway and I was still getting pangs of pain, very reminiscent of the pressure headaches I used to get when I had the arm/face swelling and high blood pressure. I’m taking some co-codamol upstairs tonight in case it strikes again. 

Dr. Thompson was running pretty much to time this morning, so I didn’t have much chance to read my book. I really must try harder, because whenever I do pick it up, I want to advance the story. I really ought to just try reading it when I know I’ll have time. Anyway, I let him know how things had been since the venoplasty (arm the same, breathing slightly better) and he thinks next time I come I should do some tests so I’ll look forward to that. 

Nothing to do but come home, so I got busy assembling the blanket. I have sat in the armchair all afternoon, sewing squares together, then columns, then across the rows, then one border, and finally a second border. Now I just have to close up the gaps between the corners and weave in some ends and it’ll be done!

Oh and I have an appointment at the lymphoedema clinic, a week after I see the liposuction lady. I have to fill in a survey about my “quality of life”. Ha. 

The 30th of July. 

Not quite one’s average Sunday. The morning was fairly standard – Sunday Brunch, blog post. This week’s comedian pal appearing on the show was Joel, who ate some chips in order to make Nish lose a wager. 

After taking Grandma home from church, Mommy and I went into Sutton to get Pandora charms for today and August. I also got a chocolate dreamcake Krispy Kreme because it’s a day to celebrate. In the end, I went for the anchor charm at Pandora, because they describe it as the “symbol of hope” and hope was all we had at that point. My chances were 20% of 20%, which works out at 4%, and yet somehow, nine years since my second stem cell transplant, I am still here. 

When we got back, we had lunch, and I spoke to a girl who is interested in adopting Betty. She actually happened to be very near my house when we talked, so she came round straight away. Betty was her usual charming self, coming straight up and purring away like a champion. It seemed to go well; she’s gone away to think about it and fingers crossed she wants her. 

The 31st of July. 

My brain was very busy in the night, dreaming about all sorts of things. 

This morning, I worked on the panda head while communicating with Philippa to find out if James had sent my referral to the lymphoedema clinic. She said it had definitely gone, so then I rang the clinic who confirmed that they’d received it, but I won’t get an appointment until October! SIGH. I’m going to have to find someone else to see because I can’t do nothing for another two months. 

After lunch, I went up to the QE to see Dean. He was starting his chemo today so it was a good day to go before he starts feeling too ghastly. Although he wasn’t feeling wonderful today, bless him. Issues with chemo timing hadn’t helped, and pharmacy were being dreadful – his chemo was meant to be at one, but it still hadn’t appeared on the ward when I left at twenty to five. He is taking his mum to see Miss Saigon tonight and I really hope they got there because he’s been looking forward to this for ages. It was nice to meet his mum and younger brother; I have heard much about them so it was nice to have faces to put to names. 

Tonight I’m off to Denise’s for a Cats Protection meeting to try to work out what we’re going to do about homing.