Archives For sleep

The 16th of March. 

I am home. HOME! I have to go back tomorrow but eh, I get to sleep in my own bed tonight and that is all I care about. 

So the doctors came to see me this morning and said they’d stopped the mero after my 6am dose, so then the only thing that was left to sort out was my oxygen. I explained to them that I do have oxygen at home, so if that was all that was keeping me in, I was very much wasting a bed. They were surprised but pleased to learn this, and said that yes in that case you can go, but we need to confirm with Dr. Sutton. 

Then I spent the rest of the day waiting for it to be confirmed. However, it emerged at about half past four that actually, Dr. Sutton has been on a course all day, but he’d probably agree so that’s fine. But then there were issues with changing the dressing on my line and arranging nurses to flush it. Then they wanted me to come and see the vascular team at eleven o’clock tomorrow, but earlier today the pain team had phoned, saying they’d had a cancellation tomorrow and did I want to come at eleven? Of course, I said yes, so tomorrow I’ll see them, then go up to 516 and they’ll bleep the vascular team, and we’ll talk about my line and hopefully sorting out the motherfucking venoplasty I’ve needed for three months. 

We finally left at six and I am at home and I am really looking forward to my bed. 

The 17th of March. 

Oh, sleep in my own bed is good. I did wake up a couple of times, but so with it for duvet and electric blanket. 

I didn’t get the lie-in I’ve been waiting for because I had my appointment at the pain clinic at eleven. We left at ten to allow for traffic and parking, but even that was not enough as there had been an accident in the Queensway tunnel which made the traffic utterly solid. It was incredibly tedious, but we eventually got to the QE only half an hour late. Thankfully, I was still able to be seen (I did ring to let them know I’d be delayed) and met a Dr. Blaney who has several avenues of thought we might go down – I will start with a patch via the GP, and we have multiple drugs I can try to hopefully find one that works and doesn’t give me side effects. He’s also going to refer me for physio so I will get that appointment at some point. There’s also the option of steroid injections if nothing else works. 

After that, it was up to 516 to see the vascular team about my line. It emerged that nobody up there really knew what was going on, until one of the doctors who’s been seeing me arrived. She went to see Ben about what he wanted, and we went to have some lunch. While sitting in the foyer, I saw a girl I met at Euston recently who I got chatting to about NG tubes (she had one) which was extremely random, but really good because I wasn’t able to get her name or anything before, so now I have a new pal!

Shortly after seeing her, my phone rang, and it was nurse Connor. The doctor had come back and they’d spoken to the IV team and basically, he was going to take my PICC out. That was grand, so we returned to the ward, and I lay down in the consultation room and experienced the lovely sensation of having something really long pulled out of your veins. It’s not painful, but there’s definitely an awareness there. I don’t really remember the last one coming out because I’d had midazolam and they let me do it. Then I had to hang out there for half an hour to make sure I didn’t bleed everywhere, then I escaped (again)!

The 28th of February. 

Happy Secret Surprise Day! Looking back, I actually booked this in August, so well done me for having the foresight to check so far in advance. 

No entertainment on the trains this morning, just the policeman I saw surreptitiously tucking a spoon into his jacket. Was he expecting some kind of cereal emergency later on? I will never know. 

The Euston chap arrived promptly with the ramp, so Christine wasn’t waiting to meet us for long. We all got in the lift, and went down to the taxi rank, where I asked the taxi driver to take us to The Ritz! Surprise!

The doorman had to get a minion to let us in (ramp issues), so we got to go in the back way, seeing the private cars parked there (including an orange/gold Bentley 4×4 with the numberplate “I GLO” which was hideous) and the “private quarters” on the way to the afternoon tea area. Our coats were taken, and then I rather awkwardly had to take the arm of the maître’d as he took us to our table, because I am obviously infirm. 

We sat in the corner, so I oversaw the rest of the diners, and Mommy and Christine watched the people who were having some sort of reception behind me – honours were being given out at the palace today and we think Kirsty Young may have received one. Unfortunately, to confirm, I would have had to turn around (and quite blatantly stare) so we were forced to speculate. 

We ordered our teas (I was intrigued by a chocolate mint one, but settled on Assam Tippy Orthodox, so it wouldn’t fight any food flavours). 

The tea stand arrived, full of sandwiches and cakes. It’s a funny procedure – you eat your sandwiches (ham with grain mustard mayonnaise on sliced brioche, cheddar cheese with chutney on tomato bread, cucumber with cream cheese, dill and chives on granary bread, chicken breast with parsley cream on malt bread, scottish smoked salmon with lemon butter on sourdough bread and egg mayonnaise with chopped shallots on white bread), then when they are gone, they bring you more, plus the (still warm) scones with jam and cream. Scones are the best part – when they break apart without the need of a knife, they are perfect. I hate jam, but I like a very thin layer of cream, so it’s like butter. 

The cakes were a tad disappointing, but that was only in my opinion, because they all contained cream and/or some kind of fruity crap, which I do not like. Thankfully, my experience was saved by the cake trolley which came round, and I had a slice of chocolate and hazelnut loaf i.e. Nutella cake. 

By the end of this, we were all suitably stuffed, and we had to vacate the table by 3.15, so we retrieved our coats from the cloakroom and get one of the many waiting cabs to the V&A. 

We arrived a little early for our allocated slot in the Undressed exhibition, so we wandered around the free area, looking at the tombs of knights and stained glass until it was time to go to the fashion gallery. The exhibition was all about the history of underwear, so started from the earliest forms of corsets, up until the present day, which included the waist trainer. Funny how things come full circle like that. There were also historical pyjamas, dressing gowns, underwear as outerwear – Kate Moss’ infamous see-through dress was there, and one of Dita von Teese’s corsets. There was a beautiful gold crocheted dress; something I would love to be able to make. 

When we were finished with the exhibition, we had a chat about what to do next, and it seemed that the most sensible thing would be to stay at the museum until it closed, looking around the rest of the free exhibitS, when we would get a cab back to Euston. 

So for an hour we bimbled about, looking at Raphael’s cartoons (not that kind of cartoon) and learning about Lockwood Kipling, father of Rudyard, but a man of whom I had never heard. 

When we left the museum, Christine went to get the tube home, and Mommy and I climbed into another waiting taxi. Very lucky with them today. Then it took us a good half an hour to get back to Euston, where we purchased magazines and beverages, then took up our usual spot in the assistance office until it was time for our train. 

No waiting in the cold on the platform today, and no delays getting back, so this time we were home by half past nine and I am happy to have given Mommy a nice birthday treat. 

The 1st of March.

Argh. Had Zopiclone last night but it did no good, just feel crap today without having had any extra sleep. Breathing has been dreadful. 

Mommy and I were both at the chiro this morning, with her going first. When it came to my turn, I got her to work on the thing that happens across my back when I lie on my right side (which I have to do to sleep), and she stretched out the abdominal muscle that has been spasming multiple times every day. We shall see tonight if it’s had any effect. 

This afternoon, I’ve been writing about yesterday, trying to talk to Imelda/anybody that can tell me what’s happening with my arm, and agonising about the Old Hallfieldian Society meeting tonight. My breathing has been so awful that I really didn’t feel like I could face it, but I didn’t want to be the reason behind another cancelled meeting because there wasn’t a quorum. 

I decided I would go, and if they needed me, I would stay. Then, when Celia answered the door, she said just to stay for half an hour while Mommy read the paper. So I stayed for most of the agenda, not contributing much but that didn’t matter.

Now, back home, and I’m going to have pancakes.  

The 26th of February. 

Happy Birthday Mommy!

I had a rather dodgy sleep, I think because of eating rich food much later than usual. Fucks up my system. 

Mommy opened her presents while I ate my toast. I gave her a teeny pot for putting herbs or a tiny plant in, and an enormous book of pictures of dogs. It’s got nowhere to live, but it amused her, which is what’s important. Besides, Tuesday is her proper present. 

She and Daddy went to pick up Grandma, while Christine finished cooking all the food and I wrote up a blog post, then twiddled my thumbs until it was time for lunch. As soon as we saw the Easts/Reames materialise with cake, we were up and opening the door. So hungry!

The afternoon has been rugby, drinking and eating. Christine, Becky, James, Jonathan and I decamped into the living room, where there was much bickering and teasing, but all in loving intent. We are essentially family.

Christine had to leave at twenty to four, so we cut the cake, but mine is still beside me, waiting for my tummy to have room for it. I’ll get there.

The 27th of February. 

Oh dear, I had another terrible night. It took me hours to fall asleep – I think on Tuesday night I might have a Zopiclone if things don’t improve. I would do it tonight, but I’d like to remember tomorrow. 

No excitement today. I rang the GP about getting some more stuff added to my repeat prescription, and left a message for Imelda, Andrew’s secretary, but she hasn’t called me back. Will try again in the morning. 

Otherwise, I have been crocheting, and Mommy and I watched the final three episodes of Case. It was not completely satisfying – I don’t see why the murderer had to get killed, instead of being put in prison, especially as they were on their way to arrest him. They’ve left it open for a second series (on a different thread) but I don’t know if we will bother.

I am very excited for Mommy’s birthday surprise tomorrow. I hope she enjoys it.

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. 

The 27th of January.

Long days and late nights do not suit me. It took me ages to go to sleep because I was so cold, so I’ve been absolutely exhausted today. 

I got up at half past nine, very reluctantly, and stayed in my pyjamas all morning. I didn’t have the energy to engage with This Morning so I let BBC 2 burble in the background while I wrote about yesterday. That took a long time because I was just feeling useless and wretched, and that is why I have not typed it up yet. 

After lunch, we changed the dressing on my arm (small puncture wound, very little to report) and I put on some warm clothes. My arm has not even started to deflate yet and even my big jumpers are getting a bit snug. I had a bit of a lie down but lacking the capability to nap in the day, it doesn’t really help, so I came back downstairs and have just been a big floop. 

I answered some Cats Protection emails and spoke to Shaki, but I can’t even remember what about now. I might take some Zopiclone tonight and try to have a big sleep. Feel like garbage. 

The 28th of January. 

A sleep has helped. Not back to normal yet but getting there. Another early night will be required. 

Having had Zopiclone, I can barely remember what I’ve done today. I know I wrote up my blog post about London and my venoplasty (update: still no improvement, fairly sure it’s actually getting worse), I went upstairs to unpack my new hairdryer, but other than that, I’m not really sure how I managed to while away the day. 

Definitely no watching of any tv that had to be paid attention to, nor any reading of books. I finished The Man in the High Castle on Wednesday, and I’ve got The Invention of Numbers out to read next but I haven’t started it yet. 

I got in touch with the gym to pause membership again and they’ve done it for five months, although I can resume it at any time. Frankly I’ve got no idea when I’ll be fit for any kind of activity; I can barely walk from room to room without getting distressingly breathless.

New body please. 

The 21st & 22nd; Birthday!

January 23, 2017 — 4 Comments

The 21st of January. 

Birthday! Had to get up super early which I didn’t love but it was for a good reason. I had a pain au chocolat for breakfast, then opened some of my presents. I got a box of macarons from Macarons & More from Grandma, a book token and a big journal from the Hudsons, a cheque from Taid, and some Moomin paraphernalia from Mommy and Daddy – a t-shirt, a notepad and pencil, and a wooden Little My that I need to assemble.

Our train to London was at 10:10, so we set off shortly after breakfast, and we were taken to the train by a woman with a very laissez-faire attitude which I did not care for. I also didn’t like being in coach A because it means I can’t really talk to the people I’m travelling with, but there was at least a fun baby who smiled at me when I made faces at her. 

We didn’t have time to wait for the Euston team to turn up, so got the chair off the train and went to get a cab to the South Bank, where we met up with Christine. We then went on a twenty minute trek in the cold to Where the Pancakes Are, but their misleading website said they would have some free tables for walk-ins, but there was nothing, so I told the woman she had ruined my birthday and left feeling very disappointed. 

Very nearby was a Caravan restaurant where they had many tasty dishes available and nice coffee, so then I was greatly cheered. I had a flat white, then smoked salmon and scrambled eggs on toast with a mimosa. Christine gave me my presents which were two Harrods cronuts (salted caramel and Speculoos and the zebra one), then Daddy had a pudding and I had more coffee. 

We got a taxi back to the South Bank because I couldn’t bear to get that cold again, then we had an hour to kill in the Royal Festival Hall before our Moomins exhibition tour. I went to the shop and bought a little stuffed Moomin and a bowl. 

The tour was lots of fun and very informative – it’s narrated by Sandi Toksvig, along with the tour guide, which was a lovely surprise, and there were lots of original illustrations and stuff that I would never have seen otherwise. I also really liked that they didn’t just gloss over the fact that she was gay and are teaching the children going on this tour that it’s okay and not something to be ashamed of. I think we need to be reminding kids that whatever they are is okay at the moment. The only bad bit was that it was not easy in the wheelchair – we actually had to collapse it and I did a lot of crouching in each room. It would be fine in a manual one with big wheels but the spaces are too small and the floor too uneven for anything else. We coped, but other people might not. The tour guide was very helpful and apologetic, and she promised to feed it back. 

Our next stop was Konditor & Cook to pick up my birthday cake, then we headed to the BFI for hot beverages and a rest before we had to go back to Euston. I had a hot chocolate, and did a lot of coughing which worried me but I think it was just because of the temperature change between there and outside. 

We saw many people who’d been to the Women’s March, which I would have loved to have gone to, but if I had, I would have definitely got ill. It was so cold today, I couldn’t have coped, even in a mass of people. Wonderful, but not sensible for me. 

When it was time, we said goodbye to Christine, then back to Euston. I got some Pom Bears and New Scientist, and when we got home, it was time for cake!

The 22nd of January. 

So tired today. I had a really bad night, not getting to sleep until past one, which is way too late for me. I got up at half past nine, put on some very warm clothes and settled in to spend my morning writing about yesterday. 

This afternoon, I was about to start writing the post I would have done yesterday, but then Alison came over with my birthday presents (more wool and flowers) and there was some catching up to do. Becky is full of lurgy so can’t come round herself, so we got all her news by proxy. It sounds like the cold Grandma’s got and I do not want either of their germs. 

We put the flowers she brought me in a vase, and I was able to finish my writing, which didn’t take long. Tomorrow won’t be so quick as there was a lot to say about my birthday. Then I got to work on otter number 2. I’ve made everything except his ears and snout, so I’ll get him finished this evening. When I’m done, it’ll be an early night. I need a big sleep. 

The 18th of November.

Today has not gone at all how I expected. Up at half past five, at the Women’s by half seven. Mommy came up to the ward with me (mainly because I couldn’t carry my overnight bag on the chair), then left me with a couple on my right and one in the far corner. The nurse (whose name I can’t remember) came to clerk me in, and was amazed by my history (as are most people). She was grateful for my drugs list, gave me a red wristband (allergies), then the healthcare assistant, Mercy, came to do my obs and bring me my anti-DVT stockings. While getting changed, I took a sneaky sip of water to help my dry mouth, then I sat and listened to the corner couple having a hushed, Jeremy Kyle-style domestic. She was really stressed about whatever she was having done, and he was telling her to “Just deal with it like everybody else in here.”, which was not very helpful. They both wanted each other to fuck off, but she also wanted him to be able to stay because she’d freak out if left alone. I gleaned that she wants a hysterectomy but nobody will do that because she’s only 23. Poor girl.

Miss Byrom and Gerwyn the anaesthetist came to see us all individually. She just ran through with me again what she was going to do – remove/separate the adhesions, attempt to do a smear, and take biopsies if deemed necessary. Gerwyn was very nice (as are all the anaesthetists I’ve met) and he was glad to have my latest lung function results. He mentioned that he wouldn’t be intubating me (for a short sleep I’d bloody well hope not), just putting down a smaller breathing tube. That was fine.

I was second on the list, so while I waited to be taken down, I decided to use the time productively and do a blog post. While I was writing, the girl in the corner came to the conclusion that she didn’t want to stay, but before she came back, the porter came and he and Mercy took me down to theatre.

I moved over to the theatre gurney, and was wheeled into the anaesthetic room. I met some new people, confirmed my identity and what I was having done, then Gerwyn had to find somewhere to cannulate me. The first vein didn’t want to co-operate, then the one on the other hand was only too happy to squirt blood everywhere. Still, it was in, then he gave me some morphine to relax me, put the mask over my face emitting gas that smelled of vanilla, and off to sleep I went.

I awoke maybe 45 minutes later, conscious that some time had passed but not long. No dreams. I was acutely aware that things were inside me and that I needed the toilet. I was told that in theatre they had put a catheter and a pack in, which would be pressing on my rectum which was why I felt like I needed to poo. The nurse in recovery was pleased with how awake I was and that I was drinking and talking, so she called the ward and the other nurse looking after me (Rachel) came down. I asked her if the lady in the corner had stayed and it turned out she had. Change of heart. The boyfriend had had to leave though because them’s the rules. She checked the inco-pad underneath me and we found that the catheter had come undone, so she screwed it back together and changed the pad so I had a clean bed.

Back on the ward, they said I would have to stay for at least six hours, until half past four, when they could take the pack out, then the catheter, and I’d have to pee without it. This was not great news but fine, I could deal with it, I just had to adjust my position regularly. It was really, very uncomfortable, and the need to poo did not abate at all. I was brought some tea and toast which at least made my tummy stop rumbling. I texted Mommy and Christine to let them know how I was, and finished off the blog post. Visiting started at 2, so I asked Mommy if she’s come then with some coffee and lunch. To pass the time, I worked on my Christmas scarf and tried to ignore my discomfort.

When she arrived, I explained in more detail what had happened this morning and told her about the whispered argument in the corner (which seemed to have been forgotten when he returned). I drank my peppermint mocha and ate my panini, all the while wriggling around. I tweeted and crocheted, and we kept hearing the nurse ring a particular doctor about him coming to see the lady in the other corner, then she could leave. She waited for him for four hours, and in the end, he didn’t even show up, just gave some instructions on what she needed to do. I would have been fuming.

By ten past four, I was counting down the minutes until we could take the pack out. I was the only one left in the bay by this point, so I could be plenty vocal about my need to have to removed. Thankfully, at half four on the dot, Rachel was all ready to do it. The curtains got pulled round, I pulled the sheet down and spread my legs. She put a sick bowl down for the pack to go in, and started pulling out the gauze. I have never, ever experienced anything like it. There was so much pain as it ripped away from the skin inside my vagina, and seemed to go on forever, like when a magician pulls a string of flags from his sleeve. In a way it did seem like magic because I have no idea how they fit so much in there. At one point, we got to a knot where it emerged that there were two packs tied together and we were only halfway through! I was in absolute agony but I told her to keep going because I just needed it to be over. When she’d finished, the blood-soaked gauze filled the sick bowl and I didn’t even feel any of the relief that I’d expected, just sheer trauma. Thank fuck I never have to give birth because that was one of the worst things I have ever been through.

I was still bleeding a lot, so we didn’t take out the catheter in case they had to put another pack in. I really did not want this to happen and I willed my body to stop. Thankfully, it did slow down, and by the time Miss Byrom came round, it was at a much more acceptable rate. She had prescribed some topical estrogen cream and explained how to use it, and gave me a slightly more graphic description of what had happened in theatre. Basically, there was only a tiny amount of vagina that was open, maybe a centimetre, and she really just had to stick her finger through and rip me apart. Brutal, but the only way. Also, they couldn’t see any hint of my cervix or the coil, but they’re definitely in there. Just don’t know how we’ll get them out when it comes to that. Still, she was happy with how I was, so the catheter and cannulas could be removed. Then I would just have to wee and I’d be able to go home! I didn’t expect this to be a problem as I’d been drinking all afternoon, but my bladder was not keen on letting any of it go.

I managed one rather small wee, which was not adequate, then I just had to drink more. I drank glass after glass, watching the clock because I really wanted to get to The Glee to see Tom and Suzi for 8. About 10 past 7, my stomach was as tight as drum with the amount of water filling it up, and I went to see if there was anything to be done that might help. I couldn’t have any diuretics, but Rachel was happy that I had at least done a wee and was confident that I was sensible enough to know what to do if anything seemed wrong.

I went for one more pitiful try, then Mommy and I took the paperwork and cream, and off to The Glee we went! I decided that I would text Suzi and ask her if she could get a member of staff to let me in the back door so I could go up in the lift and not have to climb the stairs, which she very obligingly did.

This meant I was the first one in, and for a little while, I sat alone in the studio while an excellent playlist of musical theatre tunes played. I couldn’t do the kicks on stage that I might have, but I did take a selfie because I’m cool. Then the room started to fill up, and Tom and Suzi appeared! The format was essentially intro, Suzi’s show, interval, Tom’s show. They were both equally hilarious and thought-provoking and delightful in different ways, and I enjoyed myself immensely. I popped into the dressing room at the interval to say hello and have hugs and chats, and I got to wang on about my very strange day.

Time flew by, and suddenly it was time for part two, so we had group hug and a photo before Tom’s half. I think his show was longer than Suzi’s, and by the time it was curtain down, it was nearly eleven o’clock and I was very ready to go to bed. So tired. But I was really happy I got to finish my day laughing so much with my lovely pals.

The 19th of November.

Well I don’t feel great. Having got in late, I thought I’d sleep really well, but all that water caught up with me and I woke up four times to pee. Did not want to wake up at half nine when my alarm went off but I thought I should.

I stayed in my pyjamas all morning, feeling rather delicate and taking things slowly. Mommy and I caught up on I’m A Celebrity, and I finished crocheting the tiny Christmas tree for inside a bauble. Lunchtime came round quickly, and it felt like a beans on toast kind of day. Warm, cosy food.

This afternoon, I had a go with the topical estrogen. It didn’t work quite the way I thought it would with the dilator, so tomorrow I’ll try the applicator that was provided. It certainly went in a lot further than it used to, so the surgery definitely did its job. I was glad I decided to it on a towel as I am still bleeding and had I not, I would have ruined a duvet cover. Admittedly only a rather unexciting one from Tesco, but still.

I then spent a good couple of hours writing four and half pages about yesterday. I really hope you enjoy all the detail. When I’d finished, I finally read this morning’s paper, and made the penultimate bauble. Just one left to go, for the tree to go in. It might have to be a special one because a) I have run out of outer bauble wool and b) the tree seems too big to fit in the same size as the rest.

I think it might be somewhat longer than I thought until I am back at the gym.