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The 23rd of April.

Oh god I have never been so excited about the fact that it is Monday tomorrow. Maybe my four month long saga of the fat right arm will be over soon.

Somehow I managed to press the snooze button this morning without my knowledge, but I didn’t continue to sleep for too much longer. I think I was slightly less coughy, but I had Zopiclone so it’s hard to remember. Thankfully the rest of the day has not been necessary to remember anyway.

Shockingly, it’s been mostly tv. Sunday Brunch in the am, Netflix this afternoon. I had a break in the middle for my traditional Gardeners’ Question Time and a lie down/pretend nap, but that was pretty much my only non-screen-based activity. On Netflix, I watched the first two episodes of 13 Reasons Why. I think I’ll download the next several to watch while I’m having to lie flat in ambulatory care tomorrow.

The 24th of April.

So it is done. I am praying so hard that it has worked this time but honestly I’m expecting to be disappointed.

Mommy woke me up for toast at quarter to seven, and then I couldn’t go back to sleep. I managed to kill time until we had to leave by redoing some crochet that I’d done wrong, and we set off just after 10:30. Parking was a nightmare, but we drove round enough times to chance upon someone leaving. Before going to ambulatory care, we went up to 516 to give Jenny her bear. She was delighted and put him in her pocket. We couldn’t stay too long, so we had a brief chat, then we went back downstairs and she went to check patients’ blood sugars.

I checked in at the desk at ambulatory care, then had to wait until the afternoon patients were let in. While we twiddled our thumbs, we saw Vash, the mother of a girl I was treated with at BCH. Turned out she was in a cubicle in there with some mystery virus. She did not look well, poor thing.

I had a very nice nurse who liked my hair (actually nearly every person I met commented on it) and got admitted pretty quickly, then a nurse from angio came for me because I was the only one on their list this afternoon. When we got down there, I went through the theatre check list again, and Andrew came for a chat. He explained what he was going to do, and we talked a lot about gadolinium (the dye he has to use instead of the iodine-based contrast he normally would), because I have so much during these procedures, more than a patient who’s had a lot of MRIs, more than anyone he’s ever seen and there are no studies on how this much of it can affect a body so he has concerns about that. I am just tired, I want it fixed.

We went round to the suite we were going to use. I shuffled across onto the bed and there was a who, then Andrew went to scrub in and the nurses prepped me. Covered in iodine. Once everything was set up, Andrew ultrasounded the edge of my groin to find the vein, then one of the nurses came to distract me while he got stabby with the local anaesthetic. He tunnelled up as far as he could, then he put some local in my fat arm and drove a wire up the vein in there so the two nearly met, and he used them to measure the blood pressures in those vessels, and he did a run of contrast so he could see if any strictures were there. The one he blew up in January had returned, so he was going to have to inflate that again, but with a better balloon this time. Before doing that, he wanted to use the IVUS to make sure there weren’t any more, and to get some more information about my superior vena cava. I could see the screens today, so I can tell you that an ultrasound inside your veins looks like the title sequence of Doctor Who. Like going into a black hole. From this, he was able to glean that there isn’t any more narrowing, but it is scarred. Lines for seven years will do that to you.

Satisfied that I only needed the one inflation, he gave me some sedation (they are not comfortable experiences) and I had a tiny nap. Then all the tubes and wires got pulled out and I had to lie there while he pressed very hard on the puncture site to stop the bleeding.

In recovery, I had some water, then the nurses took me and my notes back to ambulatory care. Mommy was coming back in at the same time, so we both returned to my bedspace and I told her what had gone on. Andrew came round too, and we talked through what he’d seen. He also explained that there’s no point in strenting the vein he inflated because it’s surrounded by bones and fibrous tissue so would probably just get crushed. I have to keep wearing the sleeve and squeezing the stress ball, and hope that this time it’s had the desired effect. I’ll get an appointment for his clinic. Maybe I’ll be able to wear something that doesn’t drown me.

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 14th of March. 

I am certainly improving, because I am off oxygen! At rest anyway, when I move I’ve still got to carry my pal the oxygen cylinder around with me. 

Ben popped his head in this morning when he was wandering around in his scrubs, presumably talking to patients on his endoscopy list for today. He said the pneumonia test from Heartlands result was back and apparently I do not have it, although it’s an unreliable test so who knows?! Whatever it is, I am going to take a long time to get better; he does not think I should have any long-term damage from either the infection or the pneumothorax so I should get back to where I was. Eventually. He hopes to get me home on Thursday/Friday.

Later on, Dr. Khan and Maria came around, and said much the same. My CRP has come down to 41, and if I were a normal patient, he would discharge me today, but he wants it to get down to single figures which honestly I agree with. Few more days of mero, watch my CRP, plan to be home by the weekend! I said that today I would do another oxygen test to see how much I need and they were very pleased with that idea. 

The rest of my morning, I put up a blog post, and read Dean’s magazine. It is excellent and I would recommend it, even if you’re not LGBT+, there is plenty of content that is interesting. I swear I am not biased. 

Mommy came in at lunchtime and this afternoon we had lots of chats with Jenny, the auxiliary nurse who has been looking after me for most of my time but is now off for 12 days and hopefully won’t see me again, crocheted/cross-stitched, talked to Christine on the phone, and watched The Big Painting Challenge from Sunday. We also did some more oxygen tests, which were good and bad. We found that at rest, my sats are 96/97% which is fine, and I don’t need to be on the oxygen when I’m not doing anything. However, the second test was less successful. I was going to wear the sats monitor and go for a little walk without any extra oxygen to see what the levels in my blood are like when I’m active. I got off the bed and was at the door, working out where I was going to try to walk to, put the sats monitor on, took four steps and they dropped to 85%. Not good. If I want to move around, I’m going to have to take my oxygen cylinder with me. 

Dean didn’t come down because the chemo has totally knocked him which is not surprising; it’s his 13th cycle and it doesn’t get easier the more you have, it just gets worse. Depending on how he is, I might go up to see him tomorrow, but we’ll see. No matter. 

I’m tired. I’d like to go home and sleep on a mattress that doesn’t hum and randomly in/deflate and not be woken up by somebody taking my blood pressure and eat food that doesn’t come in tupperwear or clingfilm and have my right arm be a normal size.  

Hopefully I get most of those things at the weekend. Can’t rush it. 

The 15th of March. 

No news today, I have very much just been passing the time. I have finished crocheting the doily I’ve been doing while incarcerated and the nurses are all big fans of my work. We did get a bit chatty though so I hope I did not get any of them in trouble. 

I did not see any of the consultants today, just Maria took my blood while showing another junior how to do it from a PICC, and she came back to let us know that my CRP is in the 20s now so they’ll take blood again on Friday and if I am lucky they might even kick me out on Friday night! I can hope. Praveen from haematology came to check on my progress so I gave him the latest and he went away happy. 

We (Mommy and I) have decided that what I have is actually still the pneumocystis pneumonia I had before Christmas, but I only had five days of Augmentin for that which is not effective treatment. The test for it isn’t 100% reliable so it’s the most likely suspect, especially considering some of the other symptoms, such as the non-productive cough that I have had for months, which is not productive because the sputum is too viscous to come out. Lovely. Significant hypoxia (low sats) is another symptom, and a pneumothorax is a common complication of PCP, so I think we can all safely agree that I have actually had this since December and let’s be grateful I didn’t pop my clogs because if I hadn’t come in when I did I could have been in trouble. 

But I’ve had enough now. Two, maximum three nights left. 

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.