Archives For sleep

The 13th of August. 

I love Zopiclone. I had some last night and for once it actually worked; it wasn’t hours before I fell asleep, and I stayed asleep all night long. Curiously, I remember one of my dreams, which I don’t normally when I have drugs – we smeared Grandma’s head in jelly to make her warm. 

So I slept in, which was delightful, and after breakfast, I wrote up a blog post. And now we know we saw the last race Usain Bolt won. Even if it was a heat. And Mommy is extra glad she’s got tickets to see Mo next weekend at the Alexander Stadium. 

This afternoon, I needed to get away from the horrors of life (if you don’t know what I’m talking about, you’re not paying enough attention), so I went upstairs, and I listened to James Acaster being interviewed by Richard Herring at Edinburgh which made me laugh so much, I can’t wait to see him again this autumn. Then I went to watch the final episode of Orphan Black with Betty, which made me do a small cry, but it was for happy reasons, not sad. 

I have felt much less terrible today. Less tired, less pain, less burping. All round improvement. 

The 14th of August. 

Normal sleep service has resumed, it seems. No drugs last night. Suddenly realised this morning that Becky and James’ wedding anniversary is tomorrow and we hadn’t got them cards. So, after Mommy had been to do the food shop that didn’t happen at the weekend, we went into Sutton to get some. While there, I bought some lip balms because mine is about to run out, and some nail varnish remover, then we got cards. 

Back home, we had lunch, then Becky and Jamie appeared with gifts to say thank you for feeding their cats while they’ve been away. Jamie should have been on his way back to Strasbourg, but he missed all his trains. He should be on his plane now, if everything this afternoon went to plan. We can but hope. 

Since then I have been crocheting a tiny teddy with the remaining pretty baby wool. I’ve actually finally had a good idea for what to give Pete and Sophie for their twins, and after talking to her this morning, I have a very up to date idea for when they’re likely to be born, so I don’t need to rush. 

The 11th of August. 

I have felt like total shit all day. It took me hours to go to sleep again, although at least I had no headache this time. 

This morning, I did a blog post, and I tidied up the blanket. Generally though, I have been curled up, trying to decide what to make for Pete and Sophie’s twins, and trying to ignore the fact that I am cold, tired and still full of wind. Indelicate I know, but it’s so frustrating how you can start burping after breakfast, eat multiple Rennies, yet still be massively uncomfortable come the evening.

I am considering taking Zopiclone tonight – maybe just one tablet, because I have to get up at stupid time tomorrow and I need to be properly conscious. I really hope I don’t feel quite so terrible in the morning, because I would like to enjoy the trip. 

The 12th of August. 

Phew. Pooped. Been up since five but it has been worth it. I have been a bit burpy and in some pain but I’m okay. 

So yes. The same way as last week, we bought breakfast and coffee at the station, and our journey down was largely uneventful, save for us having to move the man who was in our seats. Obviously the Euston people were nowhere to be seen when we arrived, so we got off on our own and sped down the road to St. Pancras. We almost missed our javelin train, but I got a seat, then a lot of evil looks from older women who had to stand. 

No messing about with the lifts in Westfield today; we went up in the car park and found Christine in the same place as a week ago. We made our way to our seats, but upon arrival, found the space full of fridges, so we had been reallocated. However, that was absolutely fine because we moved to seats halfway down the home straight which were way better!

First up we had the 110m hurdles in the decathlon, and in every single race at least one person fell over. Then we had some important races – the 4×100 and 4x400m relays, men and women. Our team got through to the finals of all, and we did lots of shouting and clapping, but what was most exciting was seeing Usain Bolt come out to do the heat, because he wasn’t expected to. Mommy absolutely lost her shit – I have never seen her more thrilled. It’s so funny, listening to the cheers follow the runners round the track. Less funny is when they tried to make us all sing Hey Jude, because nobody knew the words. Argh. 

We left after the 4×400, once we knew our guys were through as fastest losers. Since we’d had so much time spare last week, we went to Westfield for a leisurely lunch, and had pizza at Francis Manca. I would recommend, because their crust is soft, doughy and delicious. 

Needed some green juice and caffeine so went to Pret, then bade farewell to Christine and began the trek back across London. Euston team actually got us on the train in a timely fashion, and I listened to the new Kesha album all the way home. 

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 5th of August.

Oh god such a long day. I am in so much pain. I got up at ten to five because we had to be at New Street for twenty to seven, and that is too early for a Saturday. When we got there, we bought coffee and breakfast pastries, then sat in the assistance office until it was train time.

Arriving at Euston, we did not have time to wait for even five minutes for the ramp, so we just sorted ourselves out. Bought lunch from Pret, and a coffee to put in the thermos for later (Olympic Park coffee is vile). Then we bombed down the road to St. Pancras and got on the javelin to Stratford. I got the last seat, by sheer dumb luck. Thankful, because I can’t stand for six minutes. Upon arrival, we had to join the queue of wheelchairs for the lift, then had to navigate Westfield, trying to find a way to get to the corner of John Lewis where we were meeting Christine. The first lift was broken, and marshals didn’t know where we should go, so we ended up going all the way to the other end of the mall to find a working lift, then doubled back so we could finally get on the correct route and meet Christine. Found her, then joined the crowds heading for the Olympic Stadium. Got settled in our seats, in the disabled position just above the start line, so we had a great view of that, plus some of the heptathlon events that were going on.

For most of the morning, my eyes were killing me, and there was a freezing cold wind which I couldn’t seem to find respite from from, despite even putting up an umbrella to use as a windbreak, so I couldn’t enjoy myself as fully as I might have. I saw a lot through my camera lens, between drowning my eyes in drops and screwing them up tight. At one point, I wanted to drink the coffee we’d brought in, so I poured some out only to find it tasted really weird. I drank a bit more, then remembered that the woman behind us at Pret had ordered a soy milk cappuccino. We must have got that. No wonder it tasted so disgusting.

We saw lots of events – no finals, just heats, but it’s always fun to shout at people to run faster, and groan with everybody in the crowd when someone knocks the high jump bar down. It was so sad when KJT hit the bar on her final attempt, and we all watched her curl up in a ball on the mat, poor thing. We all felt it.

The weather made things interesting; we had several showers, and as we left, some huge rumbles of thunder. I’d been covered in the giant wheelchair poncho, so didn’t get wet when the rain came. We weren’t herded the way we were after the Anniversary Games, so we got back to Stratford much quicker than we expected. Started talking to a couple on the platform who also had a wheelchair, to find that their son is having a stem cell transplant this week! Tried to share the successes of my life to give them hope. No liver failure chat for first-timers.

We arrived at St. Pancras just after two, so had just over an hour before we needed to be at Euston. I suggested we go to Origin to have an actual nice coffee, so that took up a good half an hour, then we scooted down the rest of the round.

We picked up some reading material for the train, plus some Pom Bears, then off to the assistance office again! We’d barely sat down before we were sent to the platform, despite our train not departing for nearly thirty five minutes. We were told the chap would meet us with the ramp, so we waited out in the freezing wind for him to appear. After ten minutes, there was no one, so I rang to check the situation, and she said he was coming. We waited another ten minutes, and still nothing, so we hauled the chair on to the train, only to find the wheelchair position floor was covered in food and some other crap. I didn’t really feel like covering my wheels in that, so we folded up the chair and I sat next to Mommy. This turned out to be a smart move, because a couple got on the train with an old Westie who sat under the chair in front of me so I had a dog friend for the journey home! Then we picked up some pizzas for dinner and have about an hour in the house before I have to go out again for Regina Spektor tonight. Busy busy busy.

The 6th of August.

So. Tired. So. Much. Pain.

Regina Spektor was beautiful last night. She was, frustratingly, half an hour late on, but was so charming and brilliant, I forgave her. I never thought I’d hear Us live and it was so gorgeous. She is one of few singers who are just as good as their record if not better in person. And I was spotted by Hayley from school so we caught up afterwards which was delightful.

I am very tired now though. I got to bed after midnight, and slept until ten. I’ll still be having an early night tonight I think. Plus my back hurts all over, and my neck, and my bum. Having zero fat on there means sitting on non-padded seats all day leaves me in much, much pain.

This morning, once I was actually up, I wrote about yesterday, which was a long one. I’ll have lots of blog work to do tomorrow – got to get the photos off my camera before I do a post as well.

After lunch, I crocheted. Just crocheted squares for Michaela’s baby blanket and watched the new Orphan Black, which made me do a small cry.

We wear our scarves just like a noose
But not ’cause we want eternal sleep
And though our parts are slightly used
New ones are slave labour you can keep

We’re living in a den of thieves
Rummaging for answers in the pages
We’re living in a den of thieves
And it’s contagious

The 3rd of August.

I didn’t get a huge amount of sleep last night. At least, not good quality sleep. I got some bad news just before I went to bed, so that was rolling around in my head all night.

This morning, I did a blog post, then I had a chiro appointment at half past eleven. Time for Trine to stretch out my back, try to get some relief because the pregablin is still not helping. I’m not sure if the double dose is also making me sleepy or if that’s because of the bad night. Ugh. We went into Sutton briefly so I could get some spray-in colour for my hair, because a lot of the dyed bits have been chopped off. I’m not seeing Saskia until mid-August, so I needed something very temporary to tide me over, stop me feeling boring.

After lunch, Mommy helped me with the hair spraying, then she went to Grandma’s and I started work on a blanket for Michaela’s baby while I watched Glow. Living up to the twenty-something grandma stereotype. Testing out different kinds of granny square because I’m that cool.

I’m tired. I want to go back to bed.

The 4th of August.

Bree is gone! Belle now; her new owner is a fan of Beauty and the Beast. They arrived shortly after ten, with the grandson in a much better mood, and a cardboard cat carrier for temporary use. Bree did not want to go – she kept leaping out of the top before I could get it closed; I had to chase her round the room and shove her in which was awful and I hated it but she was okay afterwards – she had some of her toys and a blanket that Betty has been sleeping on. Fingers crossed.

I did the Catalog admin that comes post-adoption, and went to do other kittens that have been done, to find them not on the list where they should have been. I subsequently found them in the system, with the adoption bit already having been done. I found out Nicole has been doing them which she is not supposed to, because she doesn’t have all the information. I have asked her to stop doing that please, so hopefully that sorts it out.

This afternoon, Daddy and I went to see Valerian. It’s quite a fun film – Cara Delevingne pretty much carries the plot. I like that her character is cool and badass, but Valerian is still her boss despite being an asshole and pretty stupid, which pissed me off. I also didn’t like their flirty relationship because I think they look like siblings. The film did not need to end with them banging against a window.

The 1st of August. 

I am very tired because I woke up at ten past six for no reason, and couldn’t go back to sleep. I’ve had three coffees, but the caffeine has worn off and now I am weary again. 

I didn’t get up upon waking; I stayed in bed, listening to the radio for a while. When I did get out of bed, I did a blog post, and I phoned around for an appointment with somebody about my arm. I’m going to see a surgeon who does various procedures for lymphoedema, and she’s obviously very busy because the earliest I could see her is mid-September! Still, it’s before the clinic, and I need this fixing. 

I was at Black Sheep at 11.45 to get my hair cut. I saw June, as Michaela’s off until October, and now my back and sides are super short, with the top long. The last time the clippers were used so much on my hair was when we shaved it pre-chemo on my kitchen floor. Ah, memories!

After lunch, I went into town with Mommy who was giving blood. While she did that, I went shopping – I bought a skirt from Oasis, some wool from John Lewis, and I had a brow consultation at Benefit. I really had no idea what to do or use, and now I do! Then I got a text from Mommy who was finished, and we came home to find the towels that had been drying were wet again. British summer. 

The 2nd of August. 

I was woken up today by Daddy phoning me to find out where Mommy was. I didn’t know, because I had been asleep (she was here, just not near her phone), but I was glad he’d woken me because I’d been having a horrible dream in which Christine had got drunk and had sex in my bed, then she’d drawn all over my bedroom walls and I was trying to erase it, but everyone thought I was overreacting and her behaviour was fine which was really frustrating! Stupid brain. 

My day has been spent crocheting and assembling the panda. I finished off the body this morning, then we had lunch and watched last night’s Criminal Minds: Beyond Borders. Then this afternoon, I made the arms, ears, tail and scarf, then I put him all together! He is very cute but might look a bit terrifying to a new baby. I hope not. 

I have been needing lots of Rennies recently because my tummy is full of wind and I suddenly realised it might be to do with pregablin. Looked at the side effects and yep. Also it’s why I’m so much hungrier. Still not helping the pain. 

Had a lady come and see Bree with her daughter and grandson. They fell in love, and the little boy started crying when he realised they couldn’t take her home today! Bless.

The 11th of May. 

Shortly after tea last night, we decided that my breathing was so poor, a trip to A&E was required. I was just coughing and coughing, and I needed 3 litres of oxygen just to be comfortable. My chest was tight, and I couldn’t get a deep breath for the life of me.

Because I was having trouble breathing, and my recent history, I was whisked through A&E pretty quickly. I was seen by a sensible doctor who took some blood and sent me for a chest x-ray. Thankfully my lung had not collapsed again, but I have got some fluid on there which looks like infection and my CRP is 93 so antibiotics are required. It was a good thing we’d brought a bag.

I got to CDU at about half past midnight, so Mommy quickly unpacked the necessary stuff and went home. I was up for a little while longer, getting admitted and brushing my teeth. One of the old ladies in my bay talked in her sleep. Constantly. Last night’s gem was “That’s a good girl, now get in the cupboard.”

Managed to sleep through breakfast, got up to go to the bathroom and clean my face, then curled up on my bed again and slept for the rest of the morning until Ram suddenly appeared. I assume because he’s my named consultant, he must get notified if I get admitted. I told him what was going on, but because it is a chest problem, he doesn’t really have much to input.

Mommy arrived just as he and his minions were leaving, and she had brought coffee and food. I still found it difficult to rouse myself, just sat up every so often for a mouthful of coffee. Eventually I consumed enough to wake myself up, and for the rest of the day, I have tried to stay upright. Daddy came earlier than usual, but he was sleepy too, so we sent him home so he could have a nap and give some attention to Sam who will be confused that I haven’t been there to pet him.

Ben came to see me and we had a chat about my lungs. I told him what I’ve been telling everyone else, that I had been getting better but for the past few days everything’s been getting worse again. He said a curious thing about my x-ray in that one side is more lucent, that is to say more see-through, than the other. This could be caused by a stenosis. ANOTHER STENOSIS YOU SAY? HMMM. Need a CT with gadolinium. He wants to talk to Andrew but Andrew won’t be back in until Monday. Gah.

I am in a bed on 517 now. Meropenem for a few days, see what my CRP does. I’m in a bay which I hate because I have no control over when the lights go out or come on or if people are noisy or in the bathroom when I want it and I don’t like it at all. I don’t want to be here again but I have to and it is wank.

The 12th of May. 

I had a terrible night and start to the day, but thankfully since mid-afternoon, it has been greatly improved by the fact that I have been moved into a cubicle.

I was forced awake by loud chatter in the bay between the two old women and two auxiliaries, and the woman opposite me has been playing Radio 1 as loud as the radio will go through the headphones, which is loud enough to have to raise your voice to talk over. She did not seem to realise that this is terrible bay etiquette.

Because of the terrible night, I felt like garbage, but the nurse had promised me a cubicle today, so I asked Mommy to come in early to help pack up my stuff if that happened. That obviously didn’t happen until later, but I was glad to have her there so she could draw the curtains round and I could have a cry about how ghastly everything was.

It seems this ward is where they send all the old people who come in to A&E with relatively short-term issues, and people with mental health issues that aren’t being taken care of by any other service, so it is really not somewhere I belong. However, Mommy ran into Ben and he said 516 is full of the over-90s so I might be here for a few days.

Some haematology doctors came to see me, but they had not much to say apart from let’s get some bloods done to see what your CRP is. No respiratory ones but they wouldn’t have much to add yet anyway so no great loss.

Around 3 o’clock, the nurse in charge poked her head in and said they were just clearing a cubicle for me. Thank god. I could not shove my stuff in bags fast enough. Now I might be near the nurses’ station but I’ll stick my earplugs in tonight and the Zopiclone will do its job.

My breathing is not as bad as with the pneumonia but I feel arguably worse now than I did in March. Like I am listless and have no appetite, and I am just exhausted of this bullshit. Can I please be well? Just for a little bit?

The 13th of May. 

Having my own room certainly makes a difference. I slept much better, until half past eight when someone came in to ask me about drugs, to which I said NOT DRUGS TIME YET and went back to sleep until ten o’clock.

The consultant of this ward came to see me this morning but he hadn’t got much to offer. My CRP has gone up from 93 on Wednesday to 139 yesterday so the mero has yet to take any effect. Great, thanks.

Mommy came at lunch time, and Becky arrived shortly after to spend the afternoon. She and Mommy did most of the talking while I coughed and flailed around on the bed in various positions trying to find one that was comfortable for longer than thirty seconds. I was not successful. The usual school and cat chat which is a nice distraction for me. At some point, Tim from haematology came, and he was asking which antibiotics I am allergic to. It turns out that they’re the ones that they would add in with mero to cover a broad-spectrum of infections. Stupid unhelpful body. If I could bring up some cack they could test that and find out what bug it is, but this is the driest cough in the world so that isn’t happening.

That is all I really have to say about today. I still feel like trash, the drugs aren’t working and I am desperate to go home.

 The 14th of May. 

I’ve done less coughing today, but I think that’s because I have done more lying down. Usually, lying down makes it worse when I have a cough, but this time it’s the other way around.

I woke up about ten again, and quite early in the morning, a doctor came to take some blood but the results are still not in which is most bothersome. I highly suspect that the mero is not working because when Mommy arrived with lunch, I was really cold, and that is because I was spiking a temperature. Haven’t done that since sepsis in 2013 but I don’t think we need to worry about that just now.

Pretty much my entire afternoon was spent lying down and trying to get back to a normal temperature while listening to whatever came along next on Radio 4. It’s quite clear I’m feeling ghastly when I don’t think I need to be able to see.

Mainly I have been thinking about how much I want it to be tomorrow because all the doctors will be here and we can have a chat about what the fuck is going on and how it can be fixed so I can leave here and go feel like shit in my own bed.

The 15th of May. 

I am sick of this. I have spent my whole day waiting for people. Mostly, it was doctors. I had spent the whole weekend waiting for it to be today so I could speak to the respiratory doctors and they did not materialise until nearly four o’clock.

This morning, I saw the doctor from this ward and the haematology team, but they had nothing really helpful to say apart from that they’d speak to the respiratory team.

So about four, Ben turned up with an ultrasound machine. He’d had a chat with Richard and they want to know where the infection is coming from, and so do I. The ultrasound machine was to check on the fluid in my lungs, but there’s only a small pocket at the top of the right lung so that isn’t it. He’s changing the antibiotics from meropenem to vancomycin and ciprofloxacin, and I’ll get onto that later. He’s also going to request a PICC because I’ll need vancomycin levels taking and my veins won’t be able to cope with that, and an echo because I’ve had some vascular trauma and hey why not? If those don’t work, then we get a PET scan to search for the source of the infection.

I am pleased to have a plan but I still feel awful, and the vancomycin has compounded things. It took two hours for a nurse to set it up, and pretty soon it started leaking out of the dressing. This was just after half six, so Mommy and Daddy left and they let the sister who’d set it up know. Someone finally came in just after eight, and she just set it running again but really slowly and hoped that would work, but if it didn’t, to buzz again and she’d sort it out. It didn’t, it just started leaking again, so I pressed the buzzer again. And again, and again. Only to find out after ninety minutes that there wasn’t actually a qualified nurse on the ward and now it’s past ten and this cannula is going to have to come out when one finally appears.

This is the worst I have ever experienced in terms of staff shortages.

The 16th of May. 

Well I finally got my vancomycin. At half past six this morning. The nurse that I’d had for the past four nights came in for a fifth, unexpected consecutive shift because there were no staff across the board, it seemed. She took the cannula out, but then I couldn’t have a replacement dose until I had a new one and that was going to be very low down on the night doctor’s list of jobs. They finally appeared at about half past six this morning, but I had my eye mask on and ear plugs in so I was pretty unaware until the vanc was finished and it was time to get up.

The first thing that happened today was that I went for an echo. I looked very pitiful in the waiting room, hunched over in the strange, triangular wheelchair with my oxygen cylinder, coughing like a Victorian street urchin with TB. The receptionist got me some cold water, and thankfully they took me through quite quickly. It was probably the fastest echo I’ve ever had – I used to fall asleep in them but today I didn’t even have chance to get comfortable. That may have been because the test wasn’t going to find what the doctors were looking for, as I think I heard the technician say. Oh well.

This afternoon, I did a lot of coughing and flooping about on the bed. The cough has evolved into the kind where I do it less, but when I do, I cough and cough until the piece of phlegm moves, and then I am fine again for a while. Philippa from the liver team came to see me, and was telling us some vastly entertaining stories about the ward, when a porter rocked up to take me to angio for my PICC line! Surprise!

We had great fun downstairs because the ward hadn’t done a checklist, because they never send people for things like this so they didn’t know they had to do one, and then I’d been eating and drinking and had nail varnish on. That didn’t seem to be a problem though, so a doctor called Mr. Singh came to chat to me about what we were going to do and I signed the consent form.

It was not an easy one today. He kept coming up against an obstruction in my vein, which I could feel him trying to shove past (newsflash: not enjoyable!), and two other chaps behind the screen were shouting advice at him while I clenched my jaw and wished I had nice veins. He ended up inflating two balloons so he could get the catheter past, then he finished tunnelling it in and I could finally relax.

I want to go home. I say it every day. Not going to change.