Archives For May 2015

The 29th of May.

Last night I tried lorazepam and even that didn’t work. I don’t know what time I did fall asleep, but it was on and off until twenty to eleven. Kate came to flush my line but Mommy explained the situation and they let me sleep, and she’ll come back next week. I’ve still been knackered all day.

I got on the scales to see how much damage all this coughing had done to my weight – it makes my heart rate rise to over 160 each time I have a fit, and I’m back down to nearly 7 1/2 stone which is not very good. It doesn’t help that I don’t have much of an appetite and my stomach’s too small to handle a great deal anyway.

I’ve written a blog post and painted my nails – such excitement. I’ve got very little to say, just that I think I’ve coughed slightly less today? If would be nice to think this are improving.

The 30th of May.

Still barely any sleep. I’m trying lorazepam again tonight, maybe 3mg instead of 2. I remember being in hospital and taking 4 because the coughing was so awful. We’ll see.

So yes, today has just been more of the same. I read the paper and sent some shoes back to ASOS (too big), but that is the only difference. I still have no voice – I’m so exhausted. I just spend the days waiting for them to be over, so I can be another day closer to being better. Despite how shitty my normal breathing is, it’s better than this. I don’t usually get totally out of breath walking to Grandma’s room and back. I find coughs and colds so much worse than actual vomiting. At least after throwing up, one feels better, but viruses are just horrible, persistent bastards that just keep on beating me down until they finally bugger off, and I have to spend a week recovering. Agh.

The 27th of May.

Very, very tired. Woke up at 5:25 coughing and got up at six, because we needed to leave early to deal with rush hour traffic on the way to the station. All the assistance stuff went very smoothly, and Heidi met us at Bristol. I have her Rufus the Lion (he’s a bad plumber) and we went to Real Adventure, the ad agency she works at. I still have no voice, so I waved at everyone and sometimes whispered.

Everyone gathered in a wee auditorium and the was a little presentation, Mommy read a short speech that I wrote, there were some pictures from fund-raisers they’d done like running marathons, doing a Tough Mudder, and eating lots of doughnuts, then the cheque of over £4600 was handed over. It feels so good to know that at least 46 donors will be registered and possibly lives saved with money raised in my name.

Afterwards, Heidi took Mommy and I for lunch at Hart’s Bakery. I had a flat white, a ham hock and cheese toastie, and a slice of toffee and banana came. It was all incredibly delicious, and I am still full! We arrived back at the station really early, so we just got magazines and more coffee and people watched until it was time for our train. I had several major coughing fits and an old lady offered me a sweet but I politely declined, we went past a field of tiny horses and also Hallfield so I was really happy, then we got a taxi home.

Now I am in my pyjamas and pooped.

The 28th of May.

I took two Zopiclone last night and they didn’t even work – I just can’t stop coughing and it is driving me round the bend. I think I slept a bit this morning, but it’s so hard to tell I get as I wake up coughing so much. It’s the worst kind of relentless tickly bastard cough that just taunts you. 

I bought some Hudson sandals in the ASOS sale back in April, but when they arrived, they were too big, and were sold out in the next size down. I was really annoyed because they looked really good, so have been hunting for them ever since, and found some on eBay for £20! Apparently the heel on one is slightly higher but I can’t tell, and I tried them on this morning, and they fit, so hurrah!

Becky came round this afternoon as I haven’t seen her for ages, so I communicated as best I could and it was nice. I’m not expecting my voice to return until the weekend at the earliest. I hope it doesn’t take too long – I’d like to be able to order my own food at The Hand and Flowers next week.


The 25th of May.

Oh, God, I feel so awful. I didn’t fall asleep until past four am, so I had about five hours, but it was hardly of any reasonable quality. This is obviously not helping me feel any better, and my skin has decided to erupt so that’s good. I also have absolutely zero voice today – I can only whisper, no matter how hard I try.

I have been sat in front of the TV all day. I don’t have the impetus to do anything, and everytime I do move, I have a major coughing fit. So yeah I’m a mess.

In a tiny bit of good news, the blood pressure tablet I’ve started doesn’t seem to have inflated my feet yet.

The 26th of May.

I feel better having had some sleep. I took two Zopiclone and a nearly uninterrupted eleven hours of sleep. This has meant I wasn’t awake, coughing all night long, so my throat had a rest and doesn’t hurt so much today. I am hoping I feel the same tomorrow – to have improved again might be asking too much. Today has been very much the same as yesterday, except I had my hair washed.

It’s been on the news that a man has gone to Dignitas and the assisted dying debate has been reignited. In all honesty, I would like it to be legal. For purely selfish reasons. I know that I am going to need care for the rest of my life, and if it gets to a stage where my parents can’t take care of me, I wouldn’t put that burden on my sister, and I don’t have the funds to employ a full-time carer. I’d have nothing else to live for, so yes, I’d like to be able to have a lethal prescription that would end it. I can’t go to Switzerland, so a reliable set of drugs would be the best option for me. If I decide to go, I want to be sure that it’s going to work.

Days like this are really great. As in, the reason I stay I alive great. When the doctors told me in October ’13 that I needed another liver transplant, then that I couldn’t have one, I couldn’t see myself getting past the next six weeks, forget next few years. But I’m somehow still here, and I could never have imagined some of the things that have happened. Being in the news all over the world, meeting some of my favourite comedians, even now having the honour to call some of them my friends. Today I’ve been at the agency Heidi works at in Bristol because they were presenting a cheque to Anthony Nolan for over £4500, a charity they chose because of me, and it feels so incredible to know that so many donors will be registered and possibly lives saved in my name. I may not have a voice right now, but my message is still being heard. No doubt I will continue to have difficult times, because frankly my situation is totally shit and that isn’t going to change, but when I do, I remember that there is light in the darkest of places, and I have candles everywhere. 

The 23rd of May.

Yep, definitely sick. My voice is starting to go, which is great, just days before I’m supposed to talk (admittedly only a little bit) at the Real Adventure/Anthony Nolan presentation I’ve been invited to. Well done, body! Great work. I had Zopiclone last night, so I slept much better than I have recently, and this morning I read the paper and cringed at James Martin on Saturday Kitchen.

This afternoon, Daddy and I went to see Pitch Perfect 2. We were probably the oddest pair in there but never mind. Surrounded by teenage girls, which made for my vast amusement when the trailer for Magic Mike XXL came on. Poor Daddy. But yes, the film was really great and I loved it. Elizabeth Banks has done a stellar job. It made me a little bit sad, but anything can make me a little bit sad. We listened to the soundtrack on the way home.

I came back to find Julie had sent me a copy of Chinese Grazia, so that’s kind of bizarre, but also awesome.

The 24th of May.

Barely slept last night. Just constant coughing. Mommy came in at about half six because she heard me, and she wanted to know if I needed a honey and lemon but I just wanted to try to sleep. I did get up at about nine but I have just been in the armchair all day.

Honestly no activity for me. I’m so glad I’ve got nothing on until Wednesday. Complete rest and fluids until then. I need to write what I am going to say/what I’ll get someone to read for me. I have a vague idea. My voice comes and goes, it’s just the exhausting coughing that is so difficult. I’ve already lost the ability to climb the stairs without feeling like I’m going to expire at the top. Mommy is basically better now, so I just hope that my version only lasts a week or so too.

The 21st of May.

Well my day was better than I anticipated. I had to get up at quarter past six to be at the QE for my of function test at quarter past eight, so that was not particularly enjoyable, but after that, it got better. I had coffee and did my tests, the results of which were, pleasingly, better than last time. I did hope that would be the case, considering back in.February, I was still very much getting over the flu. Drl Thompson asked what I do in the gym, so I showed him the last I keep in the app, and he was surprised. I believe he described it as “proper”. 

I was all done by half past nine, but I wasn’t due up on 621 for ECP until 11:30, so I gave them a ring and they had a free machine so I was able to be done early! So we left around lunchtime and went to the Bullring, as Digbeth Dining Club are doing a collaboration with Selfridges, so I had a salame, provolone and preserved artichoke calzoni, then I got a new spiral crochet notebook and a salted caramel cookie.

This afternoon, I’ve been finishing off all the parts of mini Frankie, so I’ll hopefully put her together tonight.

The 22nd of May.

I am pretty sure I’m coming down with something – possibly what Mommy’s had, but I think it’s more a variation on that. I’m not sleeping well, feeling generally a bit pants and overly-sensitive, in a weirdly physical sense. I had ECP again this morning, and I was glad we got there early, as the machine hadn’t even been primed yet so God knows what time I might have got started. That all ticked along quite nicely, and Igor came to see me about my blood pressure. I’ve got a new drug to try, so we’ll see if/how much my feet swell up. He had Julie take some blood cultures, so they’ll show us if I need antibiotics. I probably won’t, I’m just hoping it’s a virus that goes away without getting much worse.

We went back to Selfridges after it was over as Andy’s Low ‘n’ Slow was there, and I wanted some pulled pork. I also got a couple of boxes to post crocheted stuff in, and we got an anniversary card for Peter and Sophie. Since getting home, I’ve changed into poorly-person clothes and am basically feeling pretty pathetic.

The 19th of May.

I think I’ve had a productive day. Basically crocheting a lot. The weather has been awful – this is not May weather, I find it unacceptable and would like it to be warm now please. This time last year while we were in Lyme, I was able to wear short sleeved tops and skirts! Today, I’m still wearing a thermal barrier vest and a jumper.

I started work on Donna’s duck, had lunch, got part-way through the body, then Mommy went to see Grandma. While she was there, I went and shaved my legs as despite it not being particularly warm, I will still have to wear skirts on Thursday and Friday because I’ve got photopheresis then.

Afterwards, I finished off the duck, so now I can start on a mini Frank for Theo. I’m adapting a pattern for that, so I’m just hoping it works. I think it should; it’s not too complicated.

Mommy’s voice seems to have made a slight improvement today – she’s not had to whisper quite as much. I had a killer headache for much of the day – we took my blood pressure and it was 170 over 114, which is somewhat high! I need to talk to someone about a new BP drug, just one that doesn’t massively inflate my feet. 

The 20th of May.

Ergh I feel kind of shit and am really not looking forward to my early start tomorrow. I didn’t sleep brilliantly, had weird dreams about it being my birthday and having a party where a bunch of people had been hired to be my “friends”, and to make me like them, they wore loads of socks, and none of my actual friends were invited.

I had the hygienist at 10:50, and it wasn’t much fun. My teeth are all fine, but I have wear on some of my gums (I guess I brushed too vigorously?) and the huge GvHD ulcer on the inside of my right cheek. So a lot of it was really sensitive and I was glad when it was over.

This afternoon, I was supposed to have liver clinic, but shortly after we’d left, I had a phone call saying Dr. Ferguson wasn’t there, so I asked them to reschedule as there isn’t much point in me seeing anyone else. I could’ve then gone to the gym, but it seemed neither my mind nor my body were up for it, so instead I’ve been curled up, crocheting, and hoping the ab muscle I’ve pulled stops hurting soon.

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