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 6th of March. 

Good news: my lung has re-inflated and the chest drain is out. Bad news: my breathing is still very poor. I had about eight doctors round my bed this morning (Ben Sutton from respiratory, Sridhar Chaganti from haematology, and all their minions) to discuss what might be wrong with me and what we should do about it. My input was that a) if I’m going to need IVs for much longer, I’m going to need a PICC putting in, and b) I will not have systemic steroids because they make me suicidal. Thankfully, Ben knows Bryony because she is an asthma patient of his, so he was going to talk to her about a line, which made that easy enough. The steroids were to do with treating whatever is causing the inflammation, but I absolutely refuse to have them, especially at the doses he was talking about. Swabs won’t really help in diagnosing the problem apparently, so I’m going to have a bronchoalveolar lavage, which is when an bronchoschope is put down the airway, into the lungs, they squirt a bit of fluid in and then collect it to examine. I will be sedated for that. Ben said he has a list tomorrow and someone else has one on Wednesday but it hasn’t been mentioned again since this morning so I’m not sure when that will be. 

I had a really bad night, so when Mommy arrived with coffee, I was very grateful – such a sleepy bear. We had our lunches, then we had another lovely afternoon with a visitor because Philippa from the liver team came to see me, so she was here for a couple of hours, keeping us amused. However, when it came to be time for chest drain removal, she took her leave. 

That part was far less dramatic than its insertion. I had to do some deep breathing, and on an exhale, the doctor just pulled it out, then put a lot of pressure on to stop air getting back in and to help seal the gap. So far, it seems to be staying up. I have the most ridiculously enormous dressing, but at least tonight I can sleep on my side, the way I am actually comfortable, instead of on my back like a flipped over tortoise. If I get a PICC tomorrow, I will be back to full arm function!

I’m down to one litre of oxygen tonight, and I don’t feel good, but I don’t feel as bad as I did. Back to one day at a time.  

The 7th of March. 

Today has been one of conversations and making plans. No PICC or lavage but I’ll explain about that later. 

I had a very boring morning, and was about to bunker down for a nap (now I can lie on my side it is so much easier to sleep) when Ben poked his head in and asked if it was alright if he brought his medical students in, to which I replied absolutely yes I love furthering the education of baby doctors. A troupe of seven students came in and lined up along the back wall, facing me, and Ben had them try to work out what was wrong with me. Not the whole story, that would be impossible, but the answer they needed to get to was the pneumothorax. They could ask me loads of questions, and I did have to give them some background information so they weren’t completely baffled by some of my answers. Ben also asked them general medical questions that were not entirely related to me which probably did not help them on the right path. At the end, one of them had to examine me, at which point she found the dressing from the drain, and then they guessed pneumothorax! Then Ben got me to show them my liver scar except he was expecting me to have a Mercedes when I actually have a hockey stick but hey, they still learned something. 

This afternoon’s visitor was Bryony! She had seen my name on the referrals list and was like MINE THIS ONE IS MINE because I am too complicated. Basically, I can’t have a PICC because they go into one of my veins that is already trashed from lines, so she’s liaising with Andrew and Ben, because if they put in the kind of line she is thinking of, there are certain drugs I won’t be able to have because they won’t be within the pH range that will work. I may or may not be having the lavage, depending on my oxygen requirement, but at the moment it isn’t improving. 

I had a shower this afternoon, or rather, I sat on the shower chair with the oxygen on and Mommy essentially hosed me down with the shower and I scrubbed myself with a loofah. It was a very dignified exercise. It is nice to feel clean.

As it is now gone eight o’clock and Bryony hasn’t come back to me with a plan yet, I expect to hear from her in the morning. Unless the nurse tonight has some information that I don’t know about. Either way, I may have to delay my breakfast until I know what’s happening. 

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 2nd of March.

I woke up this morning and it was clear that I needed to be in hospital. I had to have the oxygen on 3 litres when at rest which is far from acceptable. We talked about what was the best plan – do we ring haematology? Email Dr. Thompson? Or just go to A&E? We came to the conclusion that it was best to ring the CNS team, who got back to us very quickly and said to come up to the ward immediately. I finished my coffee, Mommy packed a bag and in we came. 

Jo, a nurse who has looked after me before and knows me, came and did my obs, and the first of the many doctors I saw today came. His name was Aran (I don’t know how he spells it so I am making an assumption) and we had a chat about my symptoms, then he needed to take some bloods, and for me to take off the oxygen for half an hour so he could do an arterial blood gas to see what the oxygen levels in my blood were like. He had a tough time getting the artery because mine are so small and elusive but he got there. It was not so terrible, but I will bruise.

He then went away, and after a while, he returned with Paul, one of the regs who saw me before Christmas. At rest, my sats were fine, which I found ridiculous but that was what it said. I suggested we do another blood gas after I’d walked a bit, and see what that was like. We had to leave me off the oxygen another hour to do that, so just after half past one, Aran came back with more needles and sent me off on a walk up and down the ward. I had to stop before I got to the end, but I finally got back to him, and felt like I might die. What was worst was that I couldn’t put the oxygen on to recover, and I couldn’t move or speak, just had to let him jab around in my wrist and after some time, elbow, to get the second gas. The other investigation that needed doing was a chest x-ray, which also happened very speedily. Everything has been so efficient today! So I went down to x-ray with a nurse and we had a nice chat about how we both look young (she said she was 40 which I do not believe) and then we couldn’t come back up in the lifts because the fire alarm was going off. Thankfully it was not a proper fire, and we returned to the ward.

Paul and Aran came back with looks of great excitement on their faces, and Paul asked “Have they told you?” Very much not. It appears I have a pneumothorax! That’s a collapsed lung, basically. No reason, just another stupid thing that my body has decided to do. 

To fix this, Paul had called the respiratory team, and a consultant called Ben Sutton came to see me. His opinion that the best thing to do would be a chest drain, because just aspirating with a syringe might not work and if I went home and it collapsed again we’d be in trouble. I agreed with this, and also mentioned that Dr. Thompson might want to know about this. He then came up to see me, and was not impressed that the ABGs had been done before the chest x-ray. Nevermind! 

So, chest drain. We had to wait for a respiratory reg to come up to do it, and Dr. Thompson supervised. We went through to a tiny side room, the purpose of which is something I am not entirely sure of, and I sat up on a trolley with a sheet across my front while Dr. Lugg, the reg, gowned up. First, he cleaned me, then poked me a lot between the ribs to find the gap he needed to get the needle in. He stuck a sticker on so he knew where to go back to, then I had lots of local anaesthetic around the site. There was a small cut, then there was a needle, and a wire to guide the doctor, some tubes, and a lot of pushing to get the tube into the place where it needed to be. Then he attached a very large tube, and many bubbles poured out of me. It suddenly made sense that the rumbly sensation I have been feeling was bubbles in my chest, and now they are on their way out. I could see them moving up and down the tube as I inhaled and exhaled. 

It doesn’t feel great, but I’ve had worse. The drain is firmly attached to my side, and the movement of air is slower now. I’ve had another chest x-ray to check the progress, which showed that it’s improving but hasn’t fully reinflated yet, which is how it feels. Dr. Thompson suspects I will need the rest of the air to be actively suctioned out because it might not all come out on its own. I’m sure that’ll be fun. While I was waiting to come back to the ward, I was talking to the nurse who was with me, Craig, and we were comparing physio stories, because he’d had a car crash which resulted in a brain injury and he’d been paralysed on one side, so he had to learn to walk again too. However, he was a very good physio patient unlike me, who would pretend to be asleep. 

Mommy didn’t really want to leave me, but by half past eight there were no signs of me having a bed, so I told her to go, and shortly after that, I got moved! 

Now I am in a cubicle (my favourite way to be) and going to the bathroom with the drain is interesting (I have to buzz someone), but I’m alright. I don’t think I will get much sleep tonight – lots of podcasts, maybe some Netflix. I need to plug my chargers in and get my pyjama top on, but I don’t need assistance for that. I do hate being so dependent. 

The 3rd of March. 

I am in NHS limbo. It has been a day of waiting. I did get some sleep – I don’t know what time I dropped off but I woke up at 9 in a rather curious position but at least I had some rest. However, that meant I had missed breakfast, so I asked the nurse for some bread and marmalade, and that had to do. It was not dissimilar from what I’d have at home anyway. 

I spent my morning wrapping myself up in my blanket and sheets, trying to get warm, and not quite falling asleep. Praveen, the reg from clinic, came to see me, wondering what the hell had happened since then, so I explained, and he had nothing to add so off he went again. 

Mommy arrived with food and more clothes, and we essentially sat around all afternoon waiting for my chest CT/Dr. Thompson, whichever came first. It ended up being the scan, and I had the fastest porter in the world (he was even faster than my chair!). 

When I returned to the ward, I emailed Dr. Thompson to let him know, and he replied to ask where I was, so I told him and he materialised shortly after. He looked at my bucket of chest fluid (it’s delightful) and determined that the lung isn’t going to reinflate fully on its own, so I need to go to the respiratory ward where they can use suction to get the last remaining bits of air out. We can’t do that up here because there isn’t the kit or the expertise within the staff if there are complications, which means that I am stuck until a bed becomes available down there. That was just before 4, and now it is nearly 8.30 and nothing is happening. It is nobody’s fault, it is just that the hospital is literally crammed to the rafters with patients and I can’t go and have the treatment I need until someone moves out, but they need somewhere to go. Until that happens, I am taking up a haematology bed which could be being used for a patient who needs it, and it will take longer for me to be discharged than it would have if there were enough spare beds to begin with. 

Mommy and Daddy have left after packing up all my things for when I do move, and I am just sitting on my bed, watching tv on my iPad and looking up hopefully every time someone walks past my room. If I think about how shitty this situation is, I nearly start to cry, but if I do that, I won’t be able to breathe at all. 

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 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.