Archives For breathing

The 24th of March. 

Very little to report today. I spent my morning writing all about yesterday, then put it into a blog post. I had some terrible news that James (who colours my hair) is moving to London in May! I’m very pleased for him but also very upset for my hair. I have now booked in to see him and Michaela next week, as I planned on getting it cut on the day I went into hospital, so on Tuesday I’ll have a chop and we’ll work on a spectacular finale of our relationship. 

My breathing has not been great, and that’s because when I’m just on air, my sats are only 90. Now I’ve bought a home sats monitor, I’m obsessed with checking them. It seems I have good reason to be though. 90 is not good enough. I’ll have to keep an eye on them and if they don’t improve we’ll have to see what the doctors think. Can I just get better please?

The 25th of March. 

Okay if this is recovery it is very intermittent and confusing. I slept with the oxygen on, took it off when I got up (which was late because I forgot to set my alarm) and by the time I’d got dressed, my sats had hit 85. This did not bode well. However, during the morning, I started feeling better. I took the oxygen off, and suddenly it seemed I had improved – I’ve been above 95% on air since then. I don’t understand. 

In other news, I checked MyHealth last night on a whim and saw that I have a venoplasty date! 24th of April. A month away. By the time my arm deflates (that’s if it works this time), I won’t be able to wear the rest of my jumpers which have been waiting for the past three months because it’ll probably be warm again. 

For much of my day, I sat and watched episodes of Buffy on the SyFy channel while I crocheted. Every so often I have checked my sats and they’ve been okay, so I think I’m just going to have to see how I feel every day and see if the trend is up or downward. 

The 12th of March. 

I had a minor breakdown last night. I got very sad and scared about my current state, and had to be careful not to let the tears start flowing because that would have made everything worse. Infections can cause permanent damage, and I am really, really worried that I will not return to the way I was in November, which is the last time I remember feeling relatively good. If I continue to struggle so much every time I move, my life as I know it will change forever, again. I want to still be able to walk around my house feeling okay, able to go into The Glee and climb the stairs without being so scarily out of breath that I am frozen in my seat because even thinking about anything else seems to make it harder. If I have to keep using oxygen at home then we are going to have to stop fostering kittens, because they will play with and chew up the tubing. Then, if I can’t foster, I certainly don’t want to be in charge of homing anymore because it would be torture. 

Basically, if I do not recover to a satisfactory degree, I do not want to live like that. But I don’t want to die. And I don’t know where that leaves me. I will talk to the doctors tomorrow morning, find out if we’ve grown anything specific yet, and if they think there will be any long-term effects from this. I suspect it will take a lung function test in a couple of months to know for definite, because it could take a good 6-8 weeks to really get over this. And I hate waiting. 

I had a nice break today. My only mero dose was at 2, and the doctors had said that if I wanted to go out between doses that was fine, so I asked Daddy to come and pick me up, then we went home where I had a boiled egg and soldiers for lunch, and Mommy washed my hair. It has needed doing for at least a week, so it is nice for it to feel soft and fluffy again. 

Mommy and I came back at two, when I had my mero, and the nurse was very keen to start weaning me off the oxygen again, despite the test the other day. I agreed to swap to the low flow meter, so we can bring it down in smaller increments. Started at 0.8 litres and that was okay, then at six I came down to 0.5. I don’t feel very comfortable, but my sats are 99/100, so I’m okay, and I’m going to persevere. When I started on one litre, I felt like this, and it got better, so I’ll try. I’ll still have the small cylinder on 1 litre when I move because I will definitely need the extra then. 

While I was at home, Mommy made cinnamon swirls! We are so basic – she happened to see cinnamon swirl dough in a tin, which is literally a can of dough that is about five inches long? You open the can, and slice up the length of dough, then bake and add some icing! I haven’t had one yet though – we have brought them to hospital and I am going to have one with Dean tomorrow as he’s coming in for some chemo and is going to come see me beforehand. He is also an enormous cinnamon bun fan so it is only right that I share. 

The 13th of March. 

I had a very quiet but productive morning, and a very busy and fun afternoon. It’s been pretty nice. 

I decided I should really update my blog, because I’d been putting it off until I could be bothered to type up what I wrote for Mommy’s birthday surprise day, but it had really been too long of a hiatus for me to carry on procrastinating. There wasn’t actually as much to write up as I thought, so it wasn’t too intensive. Uploading the photos took a little while because of the WiFi, but one can’t expect miracles. I have been writing my journal updates in the Notes on my phone since I was admitted, because it hurt my arm too much to physically write when I first had the chest drain, so I have just carried on since then. Plus it made it quicker when I came to actually do the blog posts. I still have to write them into my diary but that can wait. 

With six posts to do, that took pretty much my entire morning. A different doctor is on the ward this week, Dr. Khan, but he hadn’t got much news – still nothing specific has grown, the pneumonia test that they sent off to Heartlands hasn’t come back yet but apparently it sounds like it could be that from my symptoms (I really don’t know anymore), and they would take some more bloods today to see what my CRP is doing. I’ve checked but they’re not back yet. 

Dean was planning to come and see me at midday after he’d been admitted for chemo, but things were hectic on YPU so he was delayed. That was fine, I just sat and did some crocheting until Vicky arrived at half past two with coffee and hugs. I spent a lot of time explaining what has been going on because she only had my instagram to go on, and we were amused by the doctor coming to take my blood and being surprised by us both knowing so much medical language and being so aware of how this all works. It happens when it’s been your life for so long!

Dean appeared at my window just after half past three and couldn’t stay very long as he had to go back to start his chemo, but I gave him a swirl and he gave us both copies of the magazine he has just launched (it’s called Hiskind and yes he has launched a magazine while having treatment for cancer he’s fucking amazing). We had a little bit of chat but he’s going to come back tomorrow because he’s only on fluids during the day. 

Vicky left about five, and Mommy had arrived by then. Oh I forgot, I was also dropped in on by Philippa and Kirsty while both Dean and Vicky were here, so I have been quite the social butterfly! 

I am doing this as University Challenge has started and hearing the voice of Monkman made me sit up with excitement. I think he is even better than the guy who wore the leather vest. 

The 10th of March. 

The next several days are going to be much of a muchness, I think. I saw no doctors until this afternoon, so all morning I sat, waiting for them to appear, but for naught. Still, I had quite a pleasant time; I listened to Jimmy Carr’s Desert Island Discs and he chose I Will Follow You Into The Dark as the one song he would take which was correct. The rest of my time, I had Victoria Derbyshire/the news/Daily Politics on while I crocheted. I am very happy that I am able to do it again, now I can bend my left arm without jabbing the cannula needle into my tissue. I am developing some delightful bruises across my arm, it’s very attractive. 

Mommy came with coffee and lunch, and I was very happy for caffeine because I had none yesterday and I had a bad sleep because people kept doing things to wake me up. I think there should be some sort of rule that if I have not opened my curtains or buzzed you to open them then leave me the fuck alone in the morning. Bah. 

The doctor who has been wanting my blood all week came to see me this afternoon while my bed was being changed (she does have a name, it is Maria, and she did get some blood once I had the line) and she had some results from my tests. Bronchoscopy hadn’t grown anything specific yet but there is definitely infection, although she started by saying “There are no malignancies, no cancer” and I just thought WELL GOOD like I was not aware we were even looking for that but great news, thanks. My CRP has come down to 85 from 164 on Saturday, but it should really be less than 5, so I have a way to go. But the infection is responding to the antibiotics, so now we just have to keep going until it goes away. She asked about bringing down my oxygen, and I tried to explain how it feels when I take it off, but everyone seems unconvinced when I tell them while I am wearing the oxygen. She suggested I try taking off the oxygen for a little while then having my sats measured, just so they can see what they are. There was a period this afternoon while I was just sitting crocheting, no great exertion, so I took the oxygen off for 45 minutes, so my sats would definitely be only measuring the oxygen levels in my blood when I was breathing just normal air, no extra oxygen to prop them up. We got a nurse to come and check them, and they were 86%. 94% is probably the lowest that doctors would deem acceptable, so when the nurse went to report back what mine were, I was told to put the oxygen back on and to not try this again. I felt pretty triumphant because even though I was not breathing brilliantly, I was right and that was most important. When I breathe, I can’t get all the air out before I need to take the next breath in, unlike a normal person, so when I exert myself, it gets worse, which is part of why I get breathless so easily. At the moment, without oxygen, it feels like I am slightly exerted all the time, and if I don’t control myself, I might start to hyperventilate. 

Anyway. We have been watching some Crufts which is such fun. So glad I did not get tickets because I would be so annoyed that I couldn’t go because I’m poorly. Definitely going to be here until at least Monday, probably escape towards the end of next week if my CRP continues going down at the same rate. 

The 11th of March. 

So, same again. Except no doctors at all today. 

I had a late night, partly because I didn’t get my meropenem until just after half past eleven, and because there was a man calling out for a nurse for ages, and not using his buzzer like a courteous wardmate. Eventually, I closed my curtains and hoped he would eventually stop. Shortly after, I heard a loud crash, and the emergency buzzer. It emerged that there was something actually wrong with the loud man, and he wasn’t going to be making any more noise that night. He didn’t die or anything, but he was not well. Still, somebody probably would have attended to him earlier had he used his buzzer. If you seem to have the energy to call out without any real sense of urgency for a long time, it sounds like you’re not that ill. Well, in my opinion. I did feel a bit bad for being irritated but I am sure he is fine. That is what I’m telling myself anyway. 

This morning I managed to get the staff to pretty much leave me alone after my first set of obs, so I didn’t keep getting woken up. I set my alarm for 9 so it’s not like I’m having enormous lie-ins but I need a lot of sleep, especially now when I am poorly. Being woken up for breakfast at half past seven when I have my own and will eat it when I choose to is not going to help me get better. When I did get up, I listened to Radio 4 and just sat and crocheted all morning. My friends Vicky and Laura were going to come visit, but Vicky had a migraine so we have rescheduled, and I texted Mommy to ask her to come in earlier, as she was going to come at 4 instead of lunchtime as usual. Becky was going to come with her, so we let her know the change of plan and she was having lunch with her parents in the Jewellery Quarter so got dropped off after that, and they actually arrived within minutes of each other. She has been on a residential with school this week, so I told her about the exciting/upsetting events of the past few days, and she then told us all the stories of her week. As a pupil on a residential, you cannot imagine the amount of responsibility and pressure on the shoulders of the teachers looking after you. I don’t think people realise that as a teacher on a trip, there is not really any time that is a holiday because you are stressed about the kids in your care for the entire time. I could not do it. 

We had a great time watching things out of my window today – I have a very good view of the helipad, the car park of the old hospital, and all the floors of the middle third of the hospital, so we can watch everything that’s going on. The helicopter came down today (as it does most days to be honest) and I noticed for the first time all the people in the other wards looking out of their windows. It felt like we were a little community. Later on, just as Becky was about to leave, there was drama with what appeared to be a drunk man and three security guards, who would not let him into the car park. He was eventually taken into A&E, where I assume he had come from, and we saw no more. 

Mommy left a little earlier than usual, and I am going to spend my evening watching Crufts, then Room is on Channel 4 at 9 and I never got to the end of the book, so I thought I may as well watch it while I am here and have the time! 

The 8th of March. 

In total contrast to yesterday, many things have happened today! Last night I got told I needed to be nil by mouth from midnight because endoscopy were probably expecting me to go down for my bronchoalveolar lavage (or bronchoscopy for short) in the morning. 

Ben came to see me first thing and we had a very brief chat, which concluded with the decision that I would indeed have the bronchoscopy. There were only two other people on the list so I wasn’t waiting long until my turn. 

Dr. Thompson was doing the list, so when I went down to endoscopy, we had the chat about what he would be doing and I signed the consent form. As he explained the process, I realised that it was going to be horrific and I would never have agreed if I knew what I know now. I was unable to have any effective sedation because my sats were too low, so I was awake for the entire thing. Here is what happened:

Firstly, I had to do a deep “Ahhh” and he sprayed the back of my throat with lidocaine (local anaesthetic) which stung like crazy and numbed the back of my throat, which made me feel like I couldn’t swallow. Oh and I’ll say now that I coughed intensely throughout, to the point where I nearly threw up multiple times. 

Then another “Ahhh” to spray the vocal chords, so then I was coughing, in pain and couldn’t speak. I was able to signal that I could not tolerate having it go up my nose – if you imagine, the camera is about 4mm in diameter, and I could barely cope with the thinnest NG tube available, so having an endoscope up my nose and down my airway was not an option. 

One more spray, then I lay down, but then he sprayed me again and I had to sit up to cough more. He gave me 2mg of midazolam which my liver gobbled up immediately and did absolutely fuck all, so I was completely conscious, eyes screwed shut, biting down on the plastic guard that was in my mouth to stop me biting through the scope. He put the camera down my throat and into my windpipe, then deeper into my lungs, where he squirted some water which was then collected to be tested for all the bugs. I was coughing and coughing, unable to move because another doctor was holding me down, telling me I was okay and to “Just breathe” (which is really NOT FUCKING HELPFUL), honestly feeling like I might die from the strain of it. Finally he pulled it out and I had an even worse coughing fit and nearly threw up again, and he sort of patted me on the shoulder and told me to breathe. I couldn’t speak because I didn’t want to cough any more, then I was brought up to the ward, where I had to have my obs done every fifteen minutes and remain nil by mouth for another hour and a half, and I just wanted a hug and to have a cry. It is the literally worst fucking thing I have ever had done to me.

Mommy came in early, and I had a little cry when I related the experience to her. She gave me lots of hugs and thankfully the nurse who was doing my obs was amusing. 

Sometime before midday, a vascular nurse called Donna came to see me to talk about lines, and she said that they’d talked to Andrew Willis and he’d agreed that the mid-line was the best plan, so she’d come back after one o’clock with another nurse called Caroline and an ultrasound machine and she’d put one in. 

I ate some food and drank some coffee, and it wasn’t long before Donna returned with all the gubbins. She found a nice vein using the ultrasound, and I actually could understand which black blobs were veins and which were arteries. Basically, if she could squish it and it went away, it was a vein, and if it pulsed, it was an artery. She and Caroline got gowned up and covered me in various sheets, and put some lidocaine in my arm. She got started, and it was all going okay until she tried to feed the wire into the vein for the line to follow, but something seemed to be getting in the way. Caroline picked up the ultrasound, and we could see the vein, but then there was a large black blob that wasn’t a vein or an artery, and it was stopping anything going any further up my arm. She couldn’t try any more for fear of seriously damaging the vein which would leave us with no options, so the next option is that I have to go to interventional radiography for them to use dye to find good veins. And of course I am allergic to the standard dye. Donna and Caroline went down to talk to Andrew, but he wasn’t here this afternoon, so Tracy (the appointment coordinator) has booked me in for a line, but I don’t know when that’ll be, and Andrew and Dr. Hopkins who has also been involved have been emailed. 

As they were finishing, a porter came to collect me for my chest x-ray that I probably should have had on Monday after the drain was taken out. That was not very interesting, and I’m sure the results will just show that my lung has re-inflated. 

Upon my return, I found Philippa and Kirsty from the liver team in my room, talking to Mommy, so they cheered me up from my shitty day. 

I am exhausted, and I would really like some more progress. My breathing has improved – I’m not getting as breathless when I talk, for example, but moving is still a huge struggle. And somehow I think that I am not going to recover very quickly. 

The 9th of March. 

Oh, frabjous day, I have a line!

At eleven o’clock last night, the cannula site started bleeding. My immediate thought was “Oh, fuck.” but I was pleased because it meant that my need for a line was even more urgent. Thankfully, the cannula itself was still working, so I was able to have my meropenem through it. The nurse doing IVs last night offered to put another one in my right hand and I was able to warn her off, but she was quite keen. Last time I let people cannulate my hands, they were destroyed. 

We had no idea what time I might be going down to angio to have my line put in, if at all, but I knew they would want me to have been nil by mouth, so I elected to starve until we knew what was happening. Plus, the nursing team were not thrilled that I wasn’t eating or drinking, so they made extra effort to find out what the plan was. I was effectively on hunger strike, but it was directly related to the outcome, because I knew if they called me and I had eaten, they wouldn’t be able to necessarily do what was needed. 

I stayed hungry all morning, and I saw all of the respiratory and haematology doctors. Ben and his team are just waiting for results from my bronchoscopy, so hopefully tomorrow we might know something from them. The haematology chaps just pretty much wanted to know why I was still here, as if it’s my choice. It’s just that we (the doctors and I) need to know that if I’m discharged, I’m not going to be back in 48 hours complaining of other symptoms. So we do the tests, get back all our results, and if something needs treating, it gets treated. If not, I suppose it just means I am still recovering from the pre-Christmas pneumonia and my right arm still needs deflating. Fingers crossed there is news in the morning. 

I was told by the nurse in charge that she had agreed with the booking coordinator that they would talk at 12, then I would know if I was going down this afternoon or whatever the plan would be. However, at 12, the nurse here rang and got no answer, then she had to go to a meeting, so we knew nothing. Two hours passed, and I was getting increasingly irate and hungry. Mommy went and hovered about for me, and found the nurse had returned and was in the office on the phone. Whether it was about me, I don’t know. But about half past two, a porter came to take me to angio! He didn’t have any oxygen, so had to go and get some (you would think that for respiratory patients it would be a requirement), then he and a student nurse took me downstairs. Then we had a problem down there because nobody had done a theatre checklist on the ward, so we did one in recovery, then the nurse had to go back upstairs to get my nurse to fill in her half of the checklist, and she came back (after getting lost) with my checklist and a red wristband to tell people that I am allergic to things. 

I had a chat with a few people I now know down there, including Mark who has done a venoplasty on me before. Turns out the reason Andrew hasn’t been around yesterday and today is because he’s off sick, which is frankly unacceptable, but I suppose even doctors get poorly sometimes. Still, one of his “senior colleagues”, Dr. Hicks, was looking after me, and had been there when my case had come in on Tuesday. He decided that we were going to do a PICC, not a mid-line, and I thought I’d let him because if he fucked up my veins, he’d just have to fix them, and he would be in trouble with Andrew. I had not got the energy to argue. He also felt that dye wasn’t going to be necessary, and he could do it with just the ultrasound. Rather defeated the purpose of me going down there in the first place but OH WELL. It didn’t go swimmingly to begin with – he started on one side of my arm, didn’t seem to find a vein there, so had me flip it over. He found one there, but something caused a problem because he had to take out the wire and line he’d got in, then have me put my arm back the way it was originally. He finally got into a vein and it was all going to work, when I heard him say “Oh, I’ve done it wrong” which is not what one wants to hear on the table. He just meant that he’d cut the wire in the wrong place, so it was too short and he needed another one, thank god. When he got to the final bit, when the end of the line is being positioned very close to the heart, the x-ray machine came out and this time I could see what was happening! He was working on my left side and the screen was on my right, so I could watch my chest rise and fall, and the line thread across the screen into the dark mass that was my heart. It was slightly unnerving when I could feel the tip poking inside me, and I swear my heart jolted in my chest when it got prodded. 

When I came back to the ward, I pretty much shoved a sandwich into my face, then I was wondering when I might get my afternoon dose of mero, because I wasn’t here when it was supposed to happen. Just when it looked like it might be coming, somebody in the bay across from my cubicle crashed, so everybody charged in there with trolleys and machines, so I didn’t get my drugs until half past six. I don’t mind, obviously I understand that my antibiotics are not quite the priority when that sort of thing happens, but I am going to be very tired when I finally get my night time dose. I may try to go to sleep and just leave my arm available. It has been a long day.  

The 4th of March. 

Another day of waiting. But I am finally on the respiratory ward. 

Crappy night. I managed to fall asleep at some point, got the pillows arranged in a way that was vaguely comfortable. Somebody took some blood, although I wasn’t entirely sure that had happened until I found the gauze stuck to my arm. I missed breakfast again and I didn’t really want to buzz someone just to ask for some bread, so I ate the Pom Bears that Mommy brought yesterday instead. 

By the time Mommy arrived, I had curled up in a ball and was having a micronap (which I suppose just shows that I’m definitely poorly because I can’t do that when I’m fine), so I sat up and we had some lunch. Sam, my nurse, came to tell me that I would definitely be going down to 516 today, but we had to wait for a man to go a nursing home so another man could take his bedspace and I could have his room. If I got down there in time, the suctioning would happen today. Hm. 

Becky came to visit, so that was a nice distraction from everything else being so rubbish, and she had bought me a great book full of pictures of pugs in clothes and making silly faces. I can look at that when I feel like I might burst into tears. 

She unfortunately did have to go home, as she and James were going up to see his parents, so after that, Mommy and I just sat and tried to kill time until it was time to move. Another doctor who I hadn’t yet met came in, asking how I felt, and I said apart from the obvious, I feel fine. Turns out that my CRP has gone up to 163 from being 58 on Thursday, so that’s quite a leap, and now I’ve been started on IV antibiotics three times a day through the cannula that’s been shoved in my left elbow, meaning that now neither of my arms are able to function. Putting my pyjamas on will be interesting. 

I was finally summoned to the new ward about half six, and now I am sitting on my bed, on a mattress that is constantly inflating and deflating different bits because it’s designed for people who are susceptible to pressure sores, but I’m just finding it irritating. Honestly I am on the edge of tears every time somebody talks to me because I am so frustrated by everything – the spontaneous pneumothorax, how stretched the system is, my stupid veins being difficult to cannulate, my right arm being off limits because it’s full of fluid (and nothing can happen with that right now), the fact that I have to take a little bucket of chest fluid and a cylinder of oxygen with me whenever I have to pee, I can’t bend my left arm because of the cannula and can’t do much with the right because it hurts the muscles around the drain…I just want my normal life back. It wasn’t ideal, but this is intolerable. 

The 5th of March. 

I am much less weepy tonight. It has been a very typical hospital Sunday in that not a great deal has happened. I was woken by the suction being attached to the drain bucket (it’s actually just a tube that attaches from the bucket to a system on the wall that continuously sucks, but if I need the bathroom I just pull it off the wall and put it back when I return), but I don’t know who did it because I kept my eye mask on the whole time. If I hadn’t, I would’ve been blinded by the light being switched on above my head so I’m so glad I have it. 

I watched Sunday Brunch, much like any other week, I was just deprived of coffee until Mommy came with lunch. She had also baked some cupcakes, which had fallen over in her bag so they are a little bit squished but still very tasty. Now I have a box of cupcakes so I’m going to have to start giving them to the staff because there’s no way I can eat them all. Plus, Gareth came to see me and brought a box of French Fancies and a bag of Maltesers! So I am overwhelmed with tasty foods. He stayed for a good few hours and we had nice distracting conversations about what’s going on in his life (incredible gossip from his sleepy Spanish town where the vet murdered his wife 😱), which was much nicer than just watching dreary Sunday afternoon tv which is what we would have probably been doing. 

The cannula in my left arm is doing surprising well. I thought the vein would have blown by now but it’s still going, which is a relief. I’ve got no idea where they’ll put another one in when it’s time to change. Not sure how long they’ll keep me on antibiotics as it’s not like I have any symptoms, they’re just going off inflammation markers. I shall talk to the doctors tomorrow – thank god we get back to weekdays and normal service can resume. 

Coughing makes the drain site hurt. Ack. 

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 24th of February. 

Ugh, I feel like trash. Have done all day. I had a bad night, and got woken up early by the man who came to fit the carpet. Joy. It took longer than usual for me to get up and dressed, because I kept having to stop to breathe extra oxygen. 

Since then, I’ve kind of felt like I’m suffocating all day, so am trying to do very little. I can’t get a deep breath in, and neither my inhaler nor extra oxygen have helped. Just have to hope that a good sleep tonight sorts it out. 

Three good things to mention: the compression garment hurts less today, Christine has come home for the weekend, and NHS England have committed to definitely routinely funding second transplants! Finally, someone in there saw reason/had some compassion and the funding has been reinstated. 

The 25th of February. 

Breathing is very difficult and it is making life very tiresome. I am back at the stage where I am no longer capable of washing my own hair because the activity is too exhausting, and the shower is one of the few places I cannot take the oxygen. I have been able to take deep breaths though, so there’s that. 

Compression garment is back to being painful. Obviously yesterday was a fluke, worse luck. 

Had a really exciting afternoon – did my Cats Protection admin, which involved taking cats who were adopted last year off Catalog. Basically inputting all the microchip and neutering data, and all the adopters’ details. Really, very thrilling. Then, while not paying attention to the rugby, I worked on a new doily. I am such an old woman. 

This evening, we have been out to Tom’s Kitchen at The Mailbox for Mommy’s birthday (which is tomorrow). It didn’t start off brilliantly because Daddy insisted on parking on the street, so we got wet going in, then the disabled doors were broken, so we had to carry my wheelchair up steps to get inside. So I was annoyed, but then I got over myself. I had to have the truffled mac’n’cheese to start, because it is ridiculously delicious, then I had roasted pollock and pea risotto, and that was also excellent. I had no room for pudding though, and was very ready for my bed when we got home.