Archives For infection

The 23rd of May. 

Well, today has been fucking terrible. Even before I heard about Manchester, it was pretty shit because the night staff messed up my antibiotics again. For some obscure reason, they decided I had to have a vanc level done in the night before they could give it to me, and the doctor hadn’t come to take the blood by the time it was meant to go up. I told them that I didn’t need bloods doing but they refused to give me the drugs until he came. He turned up about quarter past seven, but then the nurses were in handover so nobody could do it. I sat and pressed my buzzer every fifteen minutes, getting more and more frustrated at this happening again, and I continued to get the same answer from people that so-and-so was on their way. By half past nine, I was fuming, and the staff did seem to vaguely get why I was annoyed, so finally the nurse doing the IVs came to put it up at ten to ten and I gave her short shrift. I can understand it not going up until handover was over, but for it to be three and a half hours late is just not good enough, and when I asked the nurse doing it if she would find this level of care acceptable, she couldn’t give me an answer.

So not a good start. I spoke to Andrew’s secretary because the reg I saw this morning said he hadn’t replied to the emails, and she said he was in today, but in A&E. She then rang me back later to say she’d spoken to him, and he was going to reply to the emails and he was super busy today but he would come and see me tomorrow so that is the only tiny good thing that has happened.

Obviously, over the course of the morning, information came through about the attack in Manchester last night. I have nothing poignant to say. I just remember going to shows like that, to Justin Timberlake when I was fifteen with my friends, and the chaos trying to leave a gig like that is bad. I can’t imagine the hell that unleashes when a bomb goes off. Particularly savage to target a concert where the demographic is so heavily teen and child based. I will never understand how they can be referred to as “Crusaders” when they are so innocent.

I saw the junior doctors, and they couldn’t understand why the nurses had thought I needed a vanc level doing in the night, because they were going to do one today along with my other bloods. They also re-prescribed this evening’s dose for 5 o’clock, but it’s five to eight and it still isn’t up so I’m really fucking angry, particularly as I have been talking to the nurse about it all day. This continues to happen to me and it is completely indefensible. There is prioritising and then there is straight-up not doing things and not explaining why.

Then this afternoon I had a message from Dean, and he told me that he’d had a meeting with his oncologist and surgeon and it isn’t good news. His cancer has spread and they didn’t even know about a lot of the tumours until they opened him up to take out the ones on his ribs. They have offered him chemotherapy but they aren’t optimistic about it and I knew this was probably coming but for it to be concrete is still such a blow. He is going to fight it because he has to try and he has a chance so it could absolutely work – who knows this if not me? Miracles happen and he could be one too but hearing you’re probably going to die is not something I would wish on anyone. I know how he feels and my heart aches.

The 24th of May. 

Ohh life is frustrating. Andrew has not been. And tonight my vancomycin can’t go up until my levels come back from the lab. And now I have to go to Andrew’s clinic in the morning because he didn’t come, so I need my morning dose to be through by half past eight so I’m not getting stressed about being downstairs on time.

So in medical terms, very little happened today. The doctors came round this morning but really they just wanted to see what was happening about my clinics because I was supposed to be at haematology and physio today, but we’d already sorted those out. It was a reg who I’ve not met before and apart from suggesting that they check my bloods for fungal markers because my CRP has only gone down to 35 yesterday from 37 on Sunday which is a bit shit. It’s frustrating because I feel like I could go home, I don’t want to be here anymore, but I don’t want to go too early and end up back here in a month again. I think I will ask if I can go home in the daytime at the weekend because there is no need for me to be here.

I had a nice break from the norm this afternoon because Dean and Adam came to see me. We got to talk about the shit news of yesterday, and commiserate over terrible admissions and shouty nurses. I do not ever want to have to go to Heartlands. I had my scrape there and let that be it. His chances actually sound a lot better than I thought, absolutely as good as mine were so why shouldn’t he be the one in five too? We are winners.

They had to go about four because Dean needed drugs and Adam needed to pack to go home so I made them take a cupcake each (Mommy baked them to make up for me getting upset at the nurses yesterday) and they went back to Fisher House.

The rest of the day has been spent waiting for Andrew and my blood test. Now because the bloods were done quite late, my vanc level isn’t back and I can’t have my dose. But at least tonight they are being straight with me about why I haven’t got it yet. I will buzz soon, just to see what the haps are.

The 25th of May. 

Okay. I was up early and thankfully the night staff got my vanc done and flushed off before I had to go downstairs to see Andrew. He was very unhappy about my new swelling, and now it’s spread to my face, he’s thinking we’ve got to reinflate my SVC again, super-aggressively. He said it’ll be very uncomfortable and I’ll need lots of sedation and I’m just like BRING IT ON. I don’t care, I just want it fixed. If this doesn’t work, the next option involves taking out my top rib on the right so that is very much a last resort.

Back up on the ward, I saw the doctors and told them the plan. Unfortunately, Andrew is teaching at a conference in Europe next week, then we’re away at the wedding, so in two weeks. Which is probably better for me because it means that I’ll have recovered a bit from this whole debacle. The respiratory team want to start me on Voriconazole, which I used to be on, a few years ago, in case I do have a fungal infection, so when those pills come up, I can start. Have to carry on with the vancomycin for at least three more days, ugh. But they were happy for me to go home in the daytime and just return for evening drugs, so that is what we did.

Admittedly, we only had about three hours at home by the time we got back, but it was still nice. I got to pet Sam, who was very happy to see some people in the daytime, and I got my lap drooled on. Lovely. We watched the penultimate episode of Criminal Minds, then Mommy put out the washing and I watched The Magicians. Then we hopped in the car and drove on back.

When we arrived, I realised the WiFi was down, which was boring, but my vanc got put up and I sent Mommy back home. And it seemed she just got out in time because pretty much immediately after that, lots more armed police arrived (there have been a couple milling about since Manchester but only two) and they stopped all traffic going in and out, public and staff. It was very dramatic. Nobody knew what was going on, and I could see very little from my window, just a police officer in the road and a car blocking traffic. The police helicopter flew around all evening. After about an hour, the cars started to move again and people were allowed to leave, and the nurse looking after me said that apparently there had been a “suspicious package”, but it cannot have amounted to much. A statement was put out later to say that no one had been arrested and everything was fine, but it was an interesting way to spend an evening. I’m not sure how I’d have felt had we actually been in any danger, so let’s be grateful that we’re safe.

The 26th of May. 

Today did not start off well. By eight o’clock, I should have been having my vancomycin, even been flushed off. However, it had not started, and when I asked why, the nurses said they couldn’t do it until I’d had a level taken. This made no sense to me, as I had quite a detailed chat with the doctors yesterday about when my next level would be taken and it was going to be on Saturday, after my morning dose. I explained this to my nurse, but she couldn’t give it to me anyway because she isn’t PICC line trained, so I asked her to send the sister to speak to me. However, the next person to come in was doctor Maria, who is one of Ben’s team and she is lovely. Apparently the nurses had essentially grabbed her as soon as she came in and been like YOU NEED TO MAKE A PLAN and were very rude to her! The problem is that the nurses think you have to do a vanc level every 3 doses, but actually, it’s every 3-6, and seeing as my renal function is fine and they’re not worried about me, every 6 doses is perfectly okay. They write in the notes when they want one doing, but because she didn’t document our conversation that the next level will be done on Saturday, the staff overnight arbitrarily decided I had to have one despite it not being requested. So we talked and she’s going to write in my notes that I’m to have a level done on Saturday and on Monday and that is enough, and then they were happy to come and give me my IV. Jesus.

I had to see the ward pharmacist, because some drugs were missing from my order that came up, and thankfully she came up very quickly and said she would sort that out. However, a pharmacy bag has appeared in my room and they’ve only given me one of the three drugs I asked for. Why?!

Anyway. We went home again for the afternoon, and had a bit more time today. We watched the last Criminal Minds (I cannot believe they left it like that, what utter bastards), then it was time to wash my hair! It hasn’t been done for three weeks so it feels much better now. Climbing the stairs was fucking horrific though. Not looking forward to doing that again.

Back downstairs, I sat with Sam for a bit again, and he kneaded the bare skin of my knees until I had to get a blanket to protect myself. It also stopped him drooling on me which is preferable. I watched two episodes of Helix and he purred away, looking up at me with his only fang poking out. Bless him.

Tonight, the care on the ward is not ideal. My vanc has taken two hours for some reason, and the nurse went to get a flush over an hour ago and the auxiliary I asked about it didn’t really seem to give a shit. Going to press my buzzer again in ten minutes. I think it’s going to be a long night.

The 27th of May. 

My day started with much confusion because after confirming that my vanc level would be done this morning, that actually meant pre-dose, so one of my doctors came to wake me up at about 7 to stab me in the wrist before they could put the infusion up. She was lamenting the state of my veins and I told her about how they were back in 2013 when I was being constantly cannulated and my hands just gave up. They’ve been worse, but I’ve only got one hand available and it can’t take much more.

I got my cipro when the nurse flushed me off, so when Daddy arrived at ten o’clock, I was dressed and pretty much ready to go.

So I have spent lots of my day at home! I got to have a coffee that was actually nice, and I ate some food that hadn’t been wrapped in clingfilm. For the majority of my time, I sat in the back room with the kitty. He has been a bit deprived of contact since I’ve been in, so I thought I would spoil him. Second series of Helix on Netflix and I gave him lots of brushes. Mommy said he’s been unhappy when she’s done it a couple of times but he was fine with me. Stupid cat.

I found out when I emerged just after 5 that Daddy had started having one of his labyrinthitis episodes and had been vomiting for the past hour, and every time he tried to take a tablet to calm it down, he threw it up. Poor Daddy. I felt very bad having to leave him on his own so Mommy could bring me back to hospital. She stayed just until my vanc had gone up, then she was off straight away. I do hope she found him better than when we left.

Just got to get my cipro from the nurses tonight, then I can hopefully go to bed at a reasonable time. But it’s a Bank Holiday weekend night shift so who might be on is anybody’s guess.

The 28th of May. 

Last night was surprisingly not terrible. Emily was on and she is good. She gave me my cipro when she flushed me off, so I could go to bed when I was ready.

My blood pressure became quite alarming, because I’ve had to stop one of the drugs that lowers it as it interacts with Voriconazole. However, when the doctor came, it had returned to normal, and this morning it was good again, so they decided not to do anything. But now it’s high again so we’ll have to watch it and perhaps tomorrow we might have to rethink my regime.

Since I didn’t have to wait to see any doctors, Mommy came to pick me up at twelve, after she’d taken Grandma home from church. Daddy was feeling better, albeit delicate, so we watched the Grand Prix while he ate some porridge and I had scrambled eggs on a muffin. Needed a bit of iron as I noticed on my bloods, my haemoglobin had gone down to 9.2 which isn’t great. Also my CRP has gone back up to 39, but my white cells have come down to 11.2, so I don’t understand what’s going on but I don’t see how they can justify keeping me on the vanc any longer when it clearly isn’t doing anything anymore.

I spent the remainder of my time at home sitting with the kitty. We may have a potential adopter for him, and if we can get him rehomed before we have to go away that would be excellent. He will make a very happy companion for someone. I continued with Helix, to the point where Netflix asked if I was still there. Rude.

Now back in my cubicle and the day staff didn’t manage to get my IV up before handover, so I’ll have to see if the night nurses can get on it. I don’t suppose I will be lucky enough to get Emily two nights on the trot.

The 10th of March. 

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

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

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

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

The 11th of March. 

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

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

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

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

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

The 17th of April.

Awake at half past five. Why? Stupid brain. I tossed and turned for a llittle bit, started listening to the Today programme, then got bored and watched an episode of Dexter. Mommy day my light was on so she came in to say hello, and I asked her to bring up my Tramadol so I could take it and give it a chance to start working before I started moving around.

I spent my morning frantically finishing Michaela’s black sheep, working right up until quarter to one when Daddy and I had to go to hospital for more bloods. Clinic was totally empty as it hadn’t started yet which was lovely, and Igor appeared promptly. All my cultures came back negative, but my CRP (infection marker) was 200 (it should be less than 5) so he wanted to make sure it was going in the right direction. We looked at my x-ray which showed no fractures, but the spaces between my vertebrae are smaller than they ought to be. If the pain doesn’t go away then I’ll need an MRI. Got some antihistamines from pharmacy as Tramadol makes me itchy, then Daddy took me to Black Sheep!

I got to see baby Blossom (so small!), and it was so nice to see Michaela back! I told her and James that I wanted short and vibrant, so now I’m a pink and blue pixie and I love it.

The 18th of April.

Three episodes of Dexter this morning. Plus several podcasts before I actually fell asleep. I’m so mad at my body because I’m not even on steroids – I ought to be able to sleep! I had my Tramadol upstairs already so I had it about forty minutes before I actually got up. After breakfast, I went through the weekend Guardian which took up until lunchtime.

This afternoon, I have finished Anna’s elephant and taken a frankly absurd amount of selfies because I am obsessed with my new hair. I feel pretty great about the way I look right now. Super fly. Yesterday, Michaela couldn’t get over the change in my face, which Ram also noticed, and I’m just like “Yes! This is what I’m supposed to look like! Do you now understand why I get upset about looking different “?

My right foot is swelling again a little so I’m taking furosemide but it’s still quite uncomfortable inside my slipper, so I might have to lie on my back with my legs in the air for a while. I’d also really like to go back to the gym but the pain hasn’t improved enough yet. And I have ulcers in my mouth that are not cooperating with the treatment I am doing, so tongue injections are a possibility this week.

The 18th of February. 

Right. Well. Hm. I was having a really good dream when my alarm woke me up this morning, but I had to get up because the PIP assessor was coming at 9. She was not a dragon as I had feared, but was in fact very nice and it’s all fine. After reading my file, she wasn’t sure why she had to see me but she came, I answered all the questions and she was gone by ten to ten!

My line site has just been hurting more and more, and the veins around it are much more prominent, so I decided we needed to go to clinic and get someone to look at it. I was right, because Ram’s pretty sure it’s infected and needs to come out. But if we do that, the vein might collapse. Sigh. Ram tried to ring Andrew but had to leave a message, but he did say it was urgent so I am keeping my fingers crossed that that makes a difference. 

We didn’t get home until two, so there was just time for lunch and some work on Winston the Aardvark before I had to go to the dentist. He and the hygienist were happy because I’m an excellent patient and I brush and floss twice a day. 

The 19th of February. 

So all I have done today is work on Winston, with an overhanging hope that someone might ring me with a solution to the problem with my line, but to no avail. 

Mommy woke me up at ten – my body is just constantly exhausted right now. It’s probably partly to do with the fact that I have an infection and it’s taking its toll. Since eleven, I’ve finished Winston’s head and three legs, and I’ll probably do the last leg tonight. Then ears, tail, face and sewing together tomorrow. 

There was a brief break when Becky came over with some fabric samples that we’ve decided will work for wedding cravats. 

I have very little to report because I am just waiting for someone to operate on me. I’m managing under the theory that this is hindering my breathing, but if I have the procedure and everything is still this laboured, I will have to deal with the possibility that I might not be able to go anywhere independently ever again. 

The 3rd of January. 

It’s never a good sleep when Chona is on. She is one of my nurse nemeses. She just grates on me and does utterly stupid things like trying to bleed my line back through the blue clave despite me having told her multiple times that it wouldn’t work, it would just clog up in the clave. Then it happened and she was surprised, because five years of having an apheresis line is apparently not enough experience to know what you’re talking about. She also felt the need to send newbie Mark in to check my blood pressure while I was trying to go to sleep because she thought it might have magically got better in twenty minutes, and he thought he wouldn’t get a SATs reading because I have nail polish on. Sweetheart, it doesn’t make a blind bit of difference. 

Today I hoped to see a doctor who might have some news, but all he had to say is they still don’t know what’s wrong with me, the viral swabs aren’t back, and I’ll be here until at least Monday when they might put me on oral treatment. I’m not best pleased with him, and  he’s going to find that out tomorrow.

When he was gone, I had a cry at Mommy because I am so sick of being here, not knowing what’s going on, not being able to talk to any of my doctors, and I can’t fucking breathe. 

I just don’t know how I’m going to get through tomorrow. 

The 4th of January. 

Home. Mommy had to come back last night and stay with me because I just felt helpless and could’ve ended up in a very bad situation. I also had a full-on go at Chona because she tried to draw back through the clave again on the red lumen which I’ve told her doesn’t bleed anyway. I actually was almost yelling “No you don’t listen when I talk to you, Chona”, I was so angry. She eventually shut up and did the correct things. 

Elizabeth who is an excellent nurse was on today so we told her how I felt, then when the doctor came round, it emerged that as soon as we’d established that I have flu, I could’ve gone home! The IV mero is for bacterial infection which I do not have, so the last few days of stress and misery have been for nothing. 

So now I’m at home with drugs, oxygen and my own bed. Just have to wait for my body to defeat the flu in its own time. So about three weeks. 

The 1st of July.

Well today is better – I have not burst into tears like I did last night after dinner. We decided that we would try one of my 7mg Zopiclones with one of Grandma’s 3.5mg ones that we still have to see if that worked, but no, it did not keep me asleep.

Anne-Marie came expecting to flush my line (I don’t know why as I told her on the phone it was out, the daft thing), but she took out my stitches instead. It was a lot easier than last time because they weren’t really tight in my neck and encrusted in dried blood.

I worked out this afternoon while watching Alphas, and had to chase away the black and white cat twice. Oscar was asleep by the window the entire time and was completely unfazed.

I got an adorable piece of post today from a lady who’s read about me in Cosmo and DM’d me for my address the other day – a pretty Ted Baker notebook and a Ciaté caviar manicure set so that’s lot of fun!

Oooh I am so looking forward to going away on Friday.

The 2nd of July.

Apart from being woken up by screaming foxes at half past two then not going back to sleep, today has been pretty stupendous.

Mommy went to the Post Office this morning and the new Cosmo with my piece in was there! I was almost too nervous to open it even though I knew what it said. It’s pretty perfect; they haven’t changed the copy that Julie wrote so I’m happy. My story is particularly pertinent today as the main headline on the news all day has been David Cameron saying “We need new antibiotics or loads of people will die from resistant bugs”! Yes Dave. You’re a tad late, but it’s the thought that counts. Hi, my name’s Kathryn, and I’m going to die from a superbug that drug companies find too uneconomical to try and kill.

This afternoon I went to meet Rahul who I went to Hallfield with so he could give me the blanket his friends have made for me and it’s so nice! I will definitely be taking it with me next time I’m in hospital. I basically just spent the entire time talking about myself which is terrible but I did find out the basic things he’s done in the last ten years (done English at uni, now working/living in New York and here doing real estate) before his car ticket ran out and we both had to go.

Becky came round to see the magazine and let us know how she’d got on at the chiro, and it’s nearly eight o’clock and I want to sleep so much.

Oh and I had to answer the door to the window cleaner in my kitty pyjamas this morning. But y’know. Swings and roundabouts.

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The 22nd of April.

I have pulled a muscle deep within my backside and it is causing me a fairly serious amount of pain. Ibuprofen isn’t an option because of potential dangerous side effects and I can’t use something like Voltarol because I cannot find the muscle to rub the gel into!

This morning I did normal, boring things, then at half twelve, Mommy and I went to Tesco and M&S to get me some protein snacks and more vegetables and soup. I must have appeared vastly interesting to small children, as in Tesco, a little girl pointed at me and said “She’s got pink hair!”, then in M&S, a tiny boy pointed in my face and said something made indeterminable by his dummy, but it sounded like “Radish”! That’s fine; I’ll be a radish.

This afternoon, I had some of the Super Vegetable Soup, then I did some exercising (just not any squat-like exercises). My mouth seems okay – comparing photos of it every day is helping me keep track of how it’s progressing.

A guy I’ve met a few times called Stephen is dying. He’s been terminal since 2012, but now he’s in the TCT unit with a collapsed lung, with maybe only a day or two left. He seems okay with it. I’m not sure how I’ll feel at that stage; I really hate not being able to breathe comfortable but I don’t want to die in a hospital. I don’t know how I’d be able to sleep, but any sleeping tablet would suppress my breathing more. It makes me death a little more real.

The 23rd of April.

I’ve been on the precipice of tears all day because of Stephen. It’s not because i know him particularly well or he’s had a massive effect on me, it’s just that it’s making the prospect of my own demise a little bit more solid. I am desperate not to die in hospital like he will because it would feel like I had been beaten, but logically I am not sure how I could avoid it. Dying from an infection is very different to your body slowly switching off, which is sort of what’s happening to him, I think. When I get the untreatable infection, if it’s anything like my most recent cholangitis attacks, the pain will be immense so I’ll be hopped up to my eyeballs on IV morphine at the least, plus whatever they are giving me to try to control the fever. When things start shutting down, ICU is probably going to be my destination, but I can’t bear the idea of it being the final place I close my eyes.

So thinking about that has taken up most of my day. I did some exercising as it’s a good distraction, but all in all I’m a little lost today. I’ve got to go to the QE tomorrow for photopheresis, and right now I really can’t predict how I’m going to deal with it.