The 22nd of March. 

I have been struggling again today. Needed oxygen on and off all day, to the point where I didn’t think I could cope with a visit to the chiro. I was supposed to be there at twelve, but the thought of going inside from the car, getting changed and all the movement involved in the manipulation just seemed impossible. We’ve moved it on a week when I will hopefully be feeling better. 

We did have to go out, but I just stayed in my chair and concentrated on breathing. The trip was necessary because I have run out of facewipes and need a new toothbrush, so I got all of those things from Superdrug and we returned home. I know, such excitement.

The rest of my day has just been sat in my armchair, finishing up the bunny and watching the horrors from London unfold. Some of the team from Anthony Nolan were there, including Emma, one of the other young ambassadors, to thank MPs for defending second transplants. They’re all fine, I think just got very bored and wanted to go home. 

In a way I’m only surprised this hasn’t happened here sooner. I have nothing poignant or useful to say. Speculation is pointless. Let’s not be afraid. 

The 23rd of March. 

Well, the majority of today has been rather dull. Mainly crocheting, although it was made difficult by the fact that the vision in my left eye has been a bit blurry all day. I had been ignoring it, until I actually looked at my eye in a mirror and saw a weird film that has appeared across the top of my iris. 

This was somewhat concerning, and considering my history, we thought it was best to get it checked out. It was gone five o’clock, so we decided it would be better to go to the eye hospital rather than the QE. However, they close at seven and it takes a good half an hour to get there so we had to get a wiggle on. 

I was triaged, then we went to sit in the waiting room. It’s an odd sort of place because you just wonder what is wrong with the eyes of all these people, as it isn’t generally obvious (except for the man with the eye patch). We were told it would be a 2-3 hour wait, but a nurse called me in after about ten minutes. I explained the problem and ran through my basic medical history, then I tried to read some letters off a board (quite pitifully). She asked if I wanted to wait in a side room instead of amongst the rest of the patients, which I was very grateful for, partly because I could hear many coughs and sneezes but also some very annoying children were out there. 

We then sat and read our books for an hour and a half, until a doctor came for me. He looked vaguely familiar, and we quickly realised it was the chap I saw at the QE in February, but he’d got new glasses. How fortunate that doctors like to spread themselves about. I had the letter he’d written after seeing me before on my phone, so he read it to remind himself of my case, then had a look at my eyes. He whipped out some eyelashes again but generally he was not too concerned about what he could see. It doesn’t look much different to what he saw before – apparently the film has been there some time, I have just not looked at it. Basically my eye has just got a bit angry and inflamed. I don’t need to really alter my treatment apart from an antibiotic ointment and using more lubricating eye drops. This was very reassuring, and even though it turned out to be nothing, I’m still glad we went. 

When we got home at nine, I had a present waiting for me from Denise, which was a Pusheen notebook and get well soon card! Super cute!

The 20th of March. 

Feeling slightly better today – I’m going to try going to sleep earlier and getting up a little bit later than I would otherwise. I think I’m going to need as much as reasonably possible for the next several weeks. 

This morning I put up a blog post, and remembered to print off the tickets for Jon Ronson tonight. We’re going to see him talk about psychopaths at The REP. It’s been a long time since I read The Psychopath Test so it’ll probably feel all brand new to me again. 

After lunch, Mommy went to see Grandma, and I had a mini Agents of S.H.I.E.L.D marathon while crocheting Lauren the angora bunny. Finished the head now and snipped all the loops so she’s going to look very furry. I’m not sure where I’ll place the eyes and nose amongst that fur.

When she returned, we watched the second and third episodes of The Replacement. That was bloody unsatisfactory. Not sure why they had to rush the ending so much and fill the last fifteen minutes with nonsense. Frustrating. 

Speaking of which, we tried ringing Tracy from interventional radiology today, but no answer. 

The 21st of March. 

An in-between sort of day. Went to bed late because of Jon Ronson, so I’m tired, but not to the point of needing oxygen. Just enough to not really be able to get a deep breath. 

This morning, we caught up on the episode of Broadchurch we missed last night (just throw a red-herring rapist into the mix) and saw a lot of news about Martin McGuiness. He is still the main news this evening, so nothing else can have happened today. 

Just after lunch, Jen came round with a bunch of flowers from Cats Protection which are very pretty. She couldn’t stay long, but she had time to show me the “physio” I should be doing, which involves putting my feet up, a hand on my forehead, and the other one clicking at people to bring me things. 

This afternoon, I’ve been catching up on more tv and crocheting all four bunny legs. Ears and tail left, and I think I’ll have just about enough wool. 

We finally managed to talk to Tracy this morning and she’s looking at early April for my second venoplasty. I know there isn’t much of March left but that still seems an eternity away. I’m wearing the compression garment but all it does is squeeze me down by a centimeter and hurt.

The 18th of March. 

I have an oxygen-induced headache because I’ve had to use it much more today. I don’t know why, it’s not like I slept badly or took any lorazepam, just the breathing has been worse today. I could tell when I was getting dressed that I was struggling, and I’ve had to have it on for most of the day, even when Daddy and I went to see Beauty and the Beast. 

It was the first time I have been in a public place that is not a hospital while wearing specs. It was a moment I have been dreading – being in a wheelchair and wearing oxygen is, in my mind, the image of a visibly sick person and I never saw myself as that. Even when my breathing has been bad, I’ve never been able to cope with the idea of myself going out with oxygen. I suppose it is the immediate sense of pity it inspires that I can’t bear. In my wheelchair it is not quite so bad, I am able to retain some sense of independence, but needing extra oxygen just to exist, people’s first thought is “Oh that poor young woman.” I couldn’t look anyone in the eye. 

The film is magical. I didn’t know if they could match Be Our Guest from 1991 but they did and more, and I was delighted to see the line “I use antlers in all of my decorating” get the prominence it deserves. I nearly cried several times, for more reasons than I care to put down, but for as long as I could forget myself, I had fun. 

The 19th of March. 

My eyes hurt and I am tired. I don’t understand why they’re sore – they’ve been getting much better since I started the steroid eye drops but today they are not good. Blah. I think I’m knackered just from being poorly. Stupid pneumonia, this is going to take weeks to get better. At least I have not needed the extra oxygen today (except to go upstairs/eat a main meal). 

This morning, I watched Sunday Brunch and finished off another doily. Actually, I finished it just after lunch, and with impeccable timing, that was when Becky and Alison rang the doorbell. They went to the knitting and stitching show at the NEC yesterday and had bought us presents! Mommy has a very cute set off Christmas decorations to make (there will be no room left on our tree this year for any decorations that were shop-bought) and I have Lauren the angora bunny from Toft to make! It will be a welcome change from table decorations. 

When they left, I went upstairs to try to nap, or at least lie down and rest. I put on Gardeners Question Time and closed my eyes for 90 minutes (I listened to a podcast too) but I didn’t do any sleeping. I don’t know if it helped, but I didn’t have the energy to do anything else. 

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 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!