Archives For breathing

The 4th of February. 

I do not like diuretics one bit. So much peeing. If this makes no difference to my arm in a couple of days I will be rather annoyed. More annoyed, I should say. I’d really like to wear jumpers that aren’t massive and coats that are actually warm. Sigh. 

Blog post this morning during Saturday Kitchen, then I had to be at Lyn’s house at twelve for another Cats Protection meeting. Part of it involved going down her garden, so I stayed in the house and made friends with her big black kitty. Very soft and floofy but also moulty, like Oscar was. 

It wasn’t a long one, but I was still quite hungry for my lunch when we got back. Then this afternoon, we have made Nigella’s quadruple chocolate loaf cake. It is a behemoth. 

Today is World Cancer Day, and I’ve been wearing my Anthony Nolan Unity Band. I can’t quite believe this year is ten years since I was diagnosed. I don’t know what I expected my life to be at this point – I suppose I thought I’d be fine, or dead. Certainly not this weird, in-between state, constantly breaking down in ever more creative ways. Sure, I’d like to be fine, but I don’t want to give up the good things in my life for that and I think I’d have to. I’m willing to pay this price. 

The 5th of February. 

If it’s not one thing it’s another. The arm is still exactly the same, and my back is really bad – the right side of my lower ribcage is super stiff, so deep breaths are a problem, standing and walking are even worse than usual. God I wish the bloody pain team would just give me an appointment so I could get a drug that works and doesn’t make me sick, unbearably itchy or incapable of breathing. 

Day largely spent in front of the television – Sunday Brunch and rugby, while I crocheted a sock. It’s just a practise, not going to be wearable, but if it works then I can do it again properly. 

This evening, I’ve been out at The Glee to see David O’Doherty. I planned on using the lift as my breathing is still worse than usual, but then I was told to ask inside the venue and they’d take me to it. Unfortunately, that kind of defeats the purpose because to get to the lift, I’d have to leave again to walk to the back door where the lift is, which makes me breathless anyway. So I climbed the stairs, and was taken to my seat which of course was as far from the door as possible. At this point, I was out of breath to the point where it scares me. I just have to sit and wait for it to get back to normal. 

The show was great, just what was required. Denise from Cats Protection was there with her husband and we were saying that we really needed some relief from the awful world. He definitely was that.

The 19th of July. 

It is too hot for anything other than basic respiration. I have been outside a couple of times just to see what it was like. Thirty seconds was enough. I can barely breathe. 

I was up early because I was at Black Sheep at half nine. I started having a worry that I’d got my appointment wrong because I hadn’t had a text message, but there was no point in ringing because I was the first appointment, so we just went and if I was wrong then I’d just come back to the car. However, I was right, and I just hadn’t had a text because their computer system is throwing a wobbly. 

James and I had a chat and we went much more vibrant because I want it to last longer, but we don’t know quite what will happen because my base is so light. We shall see! Mainly purple with pink fringe and pink back. It is not subtle. 

Went to the gym on the way home so I could take in my letter from Andy Toogood so my membership can be paused for free. Vlad tried to be funny about my hair change and asked if I’d had my glasses painted to match. I flatly shut those down. Do not make jokes about my appearance. I will not laugh. 

This afternoon I have stayed inside, drinking water from the fridge and updating my blog. Tomorrow I can have a day off!

The 20th of July. 

I really don’t want to complain about the weather, especially when I am so often freezing, but it is literally difficult to breathe and it appears that nowhere in our house is cool. 

I managed to get to sleep last night without too much trouble, surprisingly. I swear, the last time I was this hot was in Majorca, when I had leukaemia and didn’t know. Not great memories. At least when we were there, we had a pool I could cool off in. 

This morning I got to have a break from writing. I, like the kittens, have flooped. We have all wilted. I have been pouring extra water on their food to make sure they’re not getting dehydrated. 

I got a lovely card in the post today from Anthony Nolan to thank me for last week. Bless them. Tomorrow they deliver the letter about 2nd transplants to the Department of Health, and I so wish I was going too! Then again, if I were to speak to anyone, I would have to work really hard to not get too angry. Probably best I am not there. 

The 24th of April. 

Last night at Tiff Stevenson was great fun. I haven’t been to The Old Rep since I was at Hallfield and we went to see George’s Marvellous Medicine. It feels a lot smaller than it did then; row C was really quite close to the stage. I just wish the lady in front of me hadn’t been there as she was drenched in perfume and it kept making me cough. The show was really good – I was surprised to hear her talk so much about Black Lives Matter but she was really well-informed and we all did lots of clapping. After the show, she was in the bar so we had a chat and a selfie in which I looked awful. I need to just smile instead of pulling a face. She’s in the cool gang. 

Today, I’ve been trying not to succumb to the heavy cloud. For some reason, I decided to Google bronchiolitis obliterans (the technical term for what I have) and I found some information saying that once it develops, most patients die of respiratory failure in five years. I already seven years post-diagnosis. What does that mean for me? How long do I have left like this before I get even worse? How I’ve been was okay, I could cope with that. I am really scared that I’m going to lose the tiny amount of independence I have left. What if I become so breathless that I need the wheelchair even more? To the extent that I can’t wash and dress without gasping for breath? I really don’t know if I can deal with that, and suddenly it feels ever so real. 

The 25th of April. 

My shoulders ache this evening. More jabs today. I can understand why babies find it so distressing – it doesn’t just hurt at the time, every time I raise my right arm, I am sore. I am having lots of paracetamol. 

My mood has slightly improved; I do not feel quite so morose. I don’t know how proactive I can be about my breathing, I’ll just have to go to the gym as much as possible, really build up my muscles. I got my appointment for my next set of tests in October. Maybe I can improve things by then. 

For most of the day, I have been crocheting. I am making a Moomin to take to Robyn and Stu’s in May, and so far I have done the nose and the body up to the armpits, so it currently looks like a rather large nappy. We had to go out just after two to go to the GP, and today there was no palaver about what I was to be vaccinated against. Two in the right arm, one in the left again. Two more lots to go; one in a month, and the last one in seven months. 

Before going home, we went into Sutton because I had had a text from Waterstones to inform me of the arrival of my copy of Sara Pascoe’s book, and while there, I also ordered the new Harry Potter book because y’know. We went to Tesco too for some naan bread because we’re having curry tonight and the naans at M&S were unacceptable. 

Ouch. 

The 22nd of April. 

I had a really terrifying dream last night that the Grim Reaper was following me around and I was trying to hide from him on the sofa. I woke up very scared and had to listen to a podcast to distract myself from what was going on in my brain. 

Today has been recuperation from yesterday’s business. I did a blog post this morning while drinking a poorly-made coffee, then I returned upstairs to get dressed and I spent a good ten minutes taking selfies because I was feeling myself. 

This afternoon I crocheted a smaller mouse (I did one yesterday with a slightly larger hook). I think I need to give them noses because right now they look a little bit Voldemort-esque. Christine has come home for the weekend again and we’re trying to decide what film we might go and see tomorrow. 

Ugh I am so sleepy. I might have a Zopiclone tonight, I really would like a break from all my scary and stressful dreams. I don’t know why my brain is being so unfair to me while I’m unconscious.

The 23rd of April. 

Okay so I think my breathing is definitely worse. Maybe I have been in denial about it. If it is, I’m going to have to work out a way to make things as easy as possible, because if I continue to go downhill, I’m not sure how long life will be tolerable for. If I get to a point where I feel like I’m gasping all the time…well I don’t know. 

Sorry about that. On a cheerier note, I didn’t have any scary dreams last night, and I had a nice, chilled morning just reading the paper and actually doing the sudoku with no assistance from an app. 

A slightly earlier cinema trip than usual, as Daddy wanted to be back in time to watch the football. We decided on Bastille Day, and upon our arrival at StarCity, none of the click and collect screens were working, which was most frustrating. We had to go and queue behind all the people buying food which takes forever because they all seem rather inept. Once we finally had the tickets, we had to get the radar key to get up to our screen in the lift, and we got to our seats just in time to see the trailers. 

Film was fun. Idris Elba playing a kind of rogue CIA agent who plays fast and loose with the rules and has to stop the corrupted French police stealing the national reserves. It’s all a bit silly but we enjoyed it. 

Came out to a text from Becky to say they had adopted some kittens! I immediately went round as soon as we got home. They’re super small and adorable, just nine weeks!

Aaaaand tonight I’m off out to Tiff Stevenson. Busy girl. 

The 20th of April. 

Ugh well it has been rather a pants day. My breathing has been bad, Monica is gone, and Victoria Wood has died.

It started in an acceptable enough fashion; I did a blog post while trying to not bend my neck too much in any one direction, watched a wedding on This Morning, and spent a little time with Monica, having a little play and rubbing her belly.

Shaki arrived just before one, and we started filling in the paperwork for Monica’s new home. When Janet, her new owner, arrived, I took the cat carrier in and put the blanket she sleeps on inside with some of her toys and a couple of Dreamies to try to tempt her in. We finished all the forms, then Shaki and I went back to the kitty but she was having none of it and went straight under the bed. Shaki went back out and after a little while, she emerged, but refused to come anywhere near the carrier. Then Mommy came to have a go, she even made a trail of warmed up chicken, but in the end, she just had to pick her up, get her in, and quickly shut the door behind her. She was not happy and started crying, putting her arms through the gaps, then I basically made them leave because I could no longer bear it. 

Shaki stayed for a little bit so we could talk about some issues I am having with PetPlan, and she noticed my crochet. I’m now making a little version of her cat Charlie and some mice for the Cats Protection shop. People love my skills. 

After she’d gone, I went to the gym, and had a fairly crappy session. I had to do most of it in the wrong order, and my breathing was difficult, then the Victoria Wood news broke, and it was all just very poor. I remember listening to a cassette of her 1997 show as a child all the time. If you don’t know her, search out her work. Hero. 

The 21st of April. 

Oh, for fuck’s sake, now Prince?! This year is the worst. It truly is. 

I woke up super early for a very brief phone interview with Paul Ross that my friend Alex who produces him asked me to do last night. I just had to talk about my experience of cancer (loads of death) and what I do now (Anthony Nolan). 

At the QE for lung function tests at half past ten, then Dr. Thompson. They’ve replaced all the machines, so the tests have changed, and they’ve got rid of the one I hate. We certainly got done more quickly than before, then I was back out where I found Mommy having a chat with a chap who had recognised me from haematology clinic. He’s had a lot of the same GvHD as me, and his son and nephew have both had leukaemia as well which is very unusual. He told us about a drug that might be able to alleviate some of my symptoms but I need to talk to haematology about that. Dot, who is the sweetest nurse in the world, called me in, and told me how much she liked my hair before leaving us with Dr. Thompson. He asked how I’d been feeling, and I said I was generally okay, which surprised him because I had the worst results he’d ever seen. Kind of a kick in the face. He’s prescribed me an inhaler I have to do twice a day and we hope that might make a difference. 

Got home, had lunch, then went back out to Sutton. I needed to return an Ivy Park crop top that was too small, pick up some boring bits from Boots, and to see if Waterstones had Sara Pascoe’s book but they didn’t yet. They’ll text me when they do. Then off to Tamworth to Hobbycraft so I could get some safety eyes for the mice but they had none, so I bought some wool instead. We also went to John Lewis to look at some garden furniture, but I ended up buying a blanket which had been reduced from £65 to £19.50, and I now might hide under it until this year is over. 

The 23rd of January. 

Today I’m a very schweepy bear. Double Zopiclone last night but it was solid and dreamless which is all I require. When getting dressed, I opened a delivery from Superdry (I ordered another jumper in the sale, sue me) and it was most definitely not a dark red cable knit crew neck. It was a green hoodie. I had my breakfast, then wrote about yesterday, because I didn’t have time last night. When I’d finished, Mommy, Christine and I went into town so I could discuss the jumper problem with Superdry. 

I put on a red lip so they knew I meant business, as I couldn’t do a power eyeliner because my eyes have been being sensitive again in the past few days. The manager of Superdry couldn’t give me the correct jumper because they hadn’t got one in my size, but I’ve ordered it again online to be delivered to the shop so we can check that it’s correct before I take it home again. I just really like knitwear. 

I ate my first doughnut, the crodough – trying to eat them in the order of the ones which will keep least well. I spent the majority of the afternoon typing up my birthday blog while watching Pretty Little Liars. 

I’d really like a nap now. 

The 24th of January. 

Well, I remember bits and pieces of yesterday. Zopiclone is a funny old beast. I recall what happened in the episodes of Pretty Little Liars I watched but not a Facebook post I made yesterday morning. 

I woke up for the second morning in a row with a painfully dry mouth and after discussing it with Mommy, we’ve come to the conclusion that it’s because I’ve stopped the oxygen, so to get enough into my system, I’ve been breathing through my mouth. Tonight I’m going to put the oxygen back on and we’ll see what happens. 

My eyes were less painful this morning, so tonight I’ll use the ointment again, just a small amount. All the little things that need fixing. Watched Sunday Brunch, did the puzzles from yesterday’s paper, and Mommy and Daddy went to get Grandma who was coming for lunch. However, they returned without her because she wasn’t feeling well again. 

After lunch, I sat and crocheted the body of Esme’s giraffe. The pattern is annoying because they don’t tell you exactly where to put the patches, “just place them randomly”, and I can’t do that. I did the whole body in the base colour, then put the patches on top. It looks like a very strange pear at the moment because of the giraffe’s long neck. 

Christine gone! Back in March. 

The 3rd of January. 

Last night was the worst yet. I didn’t sleep at all until some time past seven this morning, then it was only for an hour or so. My chest wouldn’t stop rattling, and I couldn’t find a way to ease the coughing. It has been awful. I was cold, but didn’t want to get out of bed to get my dressing town. I have a thicker blanket for tonight.

I stayed in bed all morning, listening to Sunday Brunch and trying to find comfortable positions. There were some brief periods of respite. I thought I’d better get out of bed at maybe half past eleven? Mommy got some clothes out for me, I slowly made my way downstairs and we had some lunch while watching Alice in Wonderland from 1951. I think we used to have it on video, back when I was wee.

I’ve spent the afternoon mainly on the floor, listening to films and failing to subdue the rattle. It is so very tiresome, forever bringing up junk from my lungs. It never fails to amaze me just how much phlegm my body can produce (attractive, I know).

Zopiclone tonight. 

The 4th of January. 

The Zopiclone worked, thank God. I am never sure it’s going to. I tried several positions and actually slept with my head on my pillow for the first time in days last night. Mommy came in at ten to wake me, then again at ten past when I actually sat up and agreed to do things. Mommy put all my little glass Christmas ornaments on a tray on my bed and I wrapped them all up in tissue and put them in the boxes. They will not spend the year on display again like the last time I was poorly post-Christmas. 

I got downstairs earlier today. I don’t remember having lunch but I know I did – I took a picture to remind myself. It was a toasted cheese bagel. I was very careful about chewing it all and trying not to cough while I ate. I got through it without choking, victory! The amount of trepidation I feel about eating crummy foods is higher than is probably rational but last time it happened was so terrifying, I really don’t want to repeat it. 

I have done a tiny amount of crocheting, but this afternoon I think I’ve been mainly on the floor. Sounds bizarre, but it works.