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Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 20th of June. 

It has been slightly less hot today. It didn’t feel like it this morning – I had to get changed after going upstairs to put on minimal make up because I was so sweaty. It was very unpleasant. 

I was meeting Sadie for waffles at one, so Mommy dropped me off in the Bullring car park and I went up in the lift to Selfridges so I didn’t have to deal with any blinding sunlight. I was early, as always, so I got a table and waited for her while perusing the menu. We decided we would have just waffles, no room for milkshakes too. I went for the Seriously Cinnamon, but without all the whipped cream and stuff they normally put on top. Just cinnamon and syrup for me please. 

I got to hear all about the debacle of her stolen phone, her dealings with the book eater (Matthew Goodwin, her PhD supervisor), and she got to squeeze my fat fluidy arm. A fair trade. Still no venoplasty date, by the way. Once we’d eaten and paid (neither of us could finish our plates), we moved to Starbucks for cold beverages and comfier chairs. Amazingly, sofas became available just as we ordered our drinks! How fortuitous. While there, we saw two children riding around the toy section of Selfridges on these houses that move around like real ones. They’re incredible and I want one. 

Back home, I managed to get the kittens to play a little bit. They will play with me, as long as I don’t make any sudden movements. Sigh. 

The 21st of June. 

Today has been the hottest. And I had to go outside. Bleah. Oxygen clinic at ten, where we saw Ben, who was very happy to see me without tubing on my face and looking much brighter. He also wanted to know what was going on with my venoplasty/PICC, and when we told him that nothing has happened, he said he would email Andrew to try to speed things up. 

Had a slightly longer appointment with the oxygen nurse, just because I had to explain everything about the pneumonia and my stays in during the past six months. She stabbed me in the ear and my oxygen levels were a bit lower than last year but that is only to be expected and they weren’t terrible.

Went into town before going home, where I bought three books (Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge, The Power by Naomi Alderman and We Should All Be Feminists by Chimamanda Ngozi Adichie), an eyeliner and mascara from Boots, and a fan brush from The Body Shop. The lady who served me had to go and find one from the stock room, and came back with several which she put on the counter. I paid, and she brought my receipt and change round the counter to give to me, but not the brush. I assumed she had just forgotten to pick it up so asked for one and she thought she’d given it to me but I didn’t, so she handed it over. Then we went to Starbucks so I could get an espresso frappuccino. While I was waiting, I happened to look in my bag and saw a brush, which confused me because I was sure I’d put it in the Foyles bag with the books. I checked, and there was a brush in there too! I had no idea how the one in my handbag got there, so I got my drink and we went back to The Body Shop. I went up to the counter, where the lady was, and handed her the extra brush, apologising for my accidental thievery. She was very surprised me but congratulated me on my honesty. Sure I could have kept it, but what would I do with two? Seriously no clue what happened. 

This afternoon, I think I made some progress with Betsy and Brodie – we played games with my fingers. They don’t immediately run away from me now. 

I had an appointment with Trine at the chiro at half four, and it was much better than last time. No hospital bed makes such a difference!

The 31st of May.

My own bed is a beautiful place. I had such a nice sleep.

It has been a busy first day back in the real world! This morning we had to take Sam to the vet for his first set of vaccinations, then they were running so late that we only just had time to take him home before going back out to the chiro. Trine was not impressed to hear I’d been back in hospital for essentially the entire time since I saw her last. Today parts of my back that I didn’t even know were hurting needed working on. Such a mess.

We came home, had lunch, then I had to get information off Catalog to fill in a form about Sam because I didn’t have an ID sheet for him. His adopter was coming about half past two, so when I finished at two, I went to sit with Sam to say goodbye. He just wanted to sit on me, as always, and we watched the new Pretty Little Liars until the doorbell rang.

Well, they were instantly smitten. I was not surprised because he is lovely and there was no reason for them to not want him. He even stuck his tongue out, just to be extra cute. They were gone within the hour. I’m expecting a photo of him on one of their laps this evening.

Once they had left, I returned to the living room and watched new iZombie while doing Cats Protection admin. So exciting. Then this evening, Mommy and I (and my oxygen cylinder) are off to The REP to see some comedy to raise money for refugees. Nish, Joe and Tez are all on but I will not be hanging out because I am still a bit wrecked. Hoping they are all on in the first half because then I can go home.

The 1st of June. 

How is it June so soon? I have written off this year already. For the whole of it, I have been sick and swollen and in pain. I need the next seven months to be better.

Lots of little jobs to do today. Sorted out all the chargers and power packs to take on holiday, and put my iPod and old iPhone on to charge so I will have all the things to listen to in the car tomorrow. I spent my morning having a mini Agents of S.H.I.E.L.D marathon and putting all the posts I have written over the past three weeks up on my blog. Glad to finally be back up to date, although I need to write them all down in my hand written diary so they match. I still haven’t done the ones from March.

During our lunch, we watched the Bake Off Creme de la Creme final, and the military men won! We were very pleased as they were our favourites. Then we went upstairs to wash my hair and sort out my clothes that I’m taking away. It is not going to be particularly warm, so it will be a week of jeans and jumpers/cardigans.

Back downstairs, I painted my nails, but had to get Mommy to do my toes because I cannot see the outline of them clearly. I don’t understand why my eyes are getting worse again when the treatment seemed to be working. It’s not just that stuff is blurry, I’m really photosensitive and it hurts 90% of the time. At least my breathing is improving a bit – I’m only in 0.5 litres of oxygen now so I might be able to do most of the wedding without a tank at my feet.

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 17th of May. 

I have moved! I am finally on 516, thank god. I’ll probably only be here a matter of days now I’ve arrived, but at least I’ll be awake when the doctors come round. I even have a new bed so hopefully this mattress is more comfortable.

I have felt mildly better today. Most of it has been spent sitting, listening to the radio, occasionally hurling myself forward to cough. I found out that the results of my echo were unusable because my heart rate was so high. They wanted it to be under 100, but that only happens when I’ve been sitting at rest for a while. So, that was a waste of time. They can try again, but they’ll have to get me down there early and let me rest before they do it. I don’t think they’ll bother.

The sister on the ward popped her head in mid-afternoon to say that 516 had a bed for me, but they were just having a bit of turmoil on the ward and they’d call when they were ready. We packed up the room, then we were just waiting, passing the time until they called. Thankfully, Philippa came to see me again, so we had someone else to talk to. She stayed until dinnertime, which is five o’clock (I don’t eat then because I am not an 80 year old at a Harvester) and the nurse said they’d take me round when it was over. In the end, I didn’t arrive here until quarter to seven, and I’m at the very far end of the ward, as far away from the entrance as you can be. Still, I am here, in the proper place.

The 18th of May. 

Today has been frustrating because I know it started off badly due to a nurse doing something I was unhappy with, but I can’t remember what it was. It was before I was properly awake, but I’d lifted up my eye mask when she came into the room, then put it back on when I’d seen it wasn’t someone I really needed to interact with. However, I then remember us having a conversation, and me being uncomfortable with whatever was happening, then I asked her name, to which she did not reply. I then repeated myself, and she just said “Nurse”, as if Nurse was her name. I didn’t reply to that, but I considered her response a refusal to identify herself because she knew I was going to complain. She obviously didn’t know that I had seen her. I wish I had made a note at the time of the incident, because I have no idea what she did to upset me and I won’t remember because it’s Zopiclone that has caused me to forget. In a way, I’m glad she refused to tell me who she was, because I am perfectly within my rights to complain about that. It is unprofessional and unethical, especially after all the work that Kate Grainger did. Thankfully, I know she isn’t on tonight, so I don’t have to worry about seeing her again just yet.

I actually saw the respiratory doctors today, and Ben was quite happy to see me on the ward. We talked about the problem with the echo, and he still wants to find the source of the infection so he’s going to talk to the radiologists and see which would be most appropriate. Obviously, my contrast allergy is not helpful.

Another annoying thing that happened is that the night staff didn’t set up my vancomycin before they went off shift, so I didn’t get my morning dose until half past eleven, which was three and a half hours late. Which means that I’m going to have a very late night tonight. Bah.

The 19th of May. 

I think we’re getting there. The end is in sight. I got woken up by the nurse wanting to do the ECG that I was supposed have yesterday, which was fine but not ideal. Then the cleaner decided to come in and make a lot of noise, so I was awake and that was that.

I waited until the floor was dry, then poddled off to the bathroom so I could get dressed, as all of the curtains had been drawn without my consent but OH WELL. It is not for much longer, and at least tomorrow it is the weekend, so no cleaners will be coming in early to smash things around.

Seeing as I had extra time to kill and I didn’t really fancy current affairs, I put Netflix on and continued to plough my way through Helix. It’s kind of disgusting and not that good but I want to know what happens so I’m stuck. One of the junior doctors popped in and said I’d be going down for my CT in about ten minutes, but I hadn’t had my antibiotics yet, so she went to remind the nurse. It appeared relatively promptly, and CT didn’t send the porter for ages. When he arrived, I still had a few minutes left on the infusion, so we had a chat about the election and I told him to vote for whoever is most likely to beat the Tories in his constituency because if they win then people like me will literally die and he will be out of a job.

Christine has come home for the weekend, and Mommy had picked her up at New Street before coming here. She texted me just as I was being taken down to imaging to say that they were just about to park, so I informed her of my whereabouts. I was wheeled in, got on the scanner bed, the scanner did some scanning while I only just held my breath for the required amount of time, and I was done. Back up to the ward before Christine and Mommy had picked up coffee and come up in the lift.

Christine had done an excellent thing and gone to the Dominique Ansel Bakery before getting her train to Birmingham, so she had brought a cronut for Mommy (I would not have enjoyed it because this month’s flavour is Blush Peach and Elderflower Ganache) and a Kouign Amann  for me. Mm, buttery sugary pastry. Plus I have a pain au chocolat for breakfast tomorrow, hooray!

ALSO in the post yesterday, I had been sent a bag that says SABOTEUR (obviously) by a lovely Twitter follower and some macarons from Dr. Tim Kinnaird because he is a wonderful human. Lemon, vanilla, mint chocolate and cookies and creme. So a pretty great day in terms of presents for Kathryn, even if I still feel like bobbins. Speaking of which, the doctor came back with news of my scan results – it seems the infection has originated in my lungs because they are stupid bastards who don’t want me to enjoy life. Still, my CRP is in the 20s and all my other bloods are good, so I will stay on the vanc over the weekend, have more bloods done and Sunday, and review on Monday with a view to escape! Oh god I am so tired of being poorly. Clean hair, my own bed and a decent chair is all I wish for.

The 20th of May. 

Last night was a massive piss-take. My vancomycin didn’t get brought in until half past eleven, but then they hadn’t brought the proper giving set so it didn’t get started until midnight. It then finished at quarter to one, but nobody came to flush me off until ten past. Understandably, when a cleaner opened the door this morning to ask if she could clean at half past seven, I yelled NO without a second thought. You can all fuck right off.

I had to get up at twenty past eight because I had my eye appointment, hence why I was so desperate to cling to every moment of sleep I could. Mommy got here at half past nine, and I put on my shoes and glasses and we went down to outpatients, avoiding the lift she had come up in that smelled of B.O.

My eyes were absolutely disastrous. Even with my specs on, when covering my right eye, I could not even read the top letter. However, when looking through the pinholes, I could? They did explain it to me once but I have forgotten how it works. And that was just the pre-examination. When I went through to see Dr. Barry, he immediately whipped out my eyelashes again, then proceeded to look at the scarring and yeah it is worse. I have to do the dexamethasone eye drops four times a day now, and cyclosporine ones at night, plus the lubricating drops and the lacrilube. Excellent.

Got some coffee from Costa where a child would not stop whining about marshmallows, then back up to the ward. They said to tell them when I arrived so they could get the vanc up straight away, but that actually meant in an hour. So another late night tonight.

Christine came in on the train, having been to the cinema with Daddy. It sounds like the film they saw, Colossal, is not great and I have rather dodged a bullet by being poorly. Although had I been going, we probably would have seen a different film.

We spent our afternoon watching a rather different film, Wreck-It Ralph, then I slept through Monsters University. Tonight I have asked for my antibiotics to go up as early as possible, but what good that will do I don’t know.

The 21st of May. 

Last night was equally ghastly. I spoke to the nurses about trying to do my drugs as early as possible, and was told I’d be prioritised. However, that ended up meaning my vancomycin went up at twenty to midnight and I got flushed off at 1am instead of slightly later. I lay wide awake for two podcasts as well, so I didn’t fall asleep until three at the earliest. Plus matters were not helped by my new cyclosporine eye drops which sting and the pain did not start to wear off until mid-afternoon today.

Therefore, this morning I felt like shit. I think I got up about 9 after multiple people came in to clean and do obs and kept leaving my door open. Gah. I was then even less thrilled when my morning antibiotics went up at twenty past eleven. This had me ready to burst into tears because I am so exhausted and nobody really seemed to give a shit.

I saw three doctors, which is unheard of on a Sunday. The first one was junior doctor, just to take some blood. Not much to report. The second was the weekend reg, who had come to see how I was. When I told him, he didn’t appear to be particularly concerned, and actually came across like he was thinking I might be ready to be kicked out. I might be sick of this place but I also know I am not well enough to be discharged. Thankfully, the third doctor was Dr. Thompson. I have no idea what he was doing here, I’ve never seen a consultant on this ward at a weekend, but I was so glad to see him. He perched on the bin, and I told him what was going on with the antibiotics, along with everything else. He could see that I am wrecked, and he thought that it being so late was stupid, and he had the nurses bring tonight’s dose forward to six o’clock, so I can go to bed at a reasonable time. I also mentioned to him that my arm swelling had got worse (I measured it and it’s gone up by a good 15mm), so he emailed Andrew there and then, and I will bring it up with the doctors tomorrow as well because I need to see the vascular team as a matter of urgency now. I am so pleased he came.

Mommy and Christine arrived at lunchtime and I launched into a tirade about last night. They were very sympathetic and I was eventually able to laugh at how ridiculous it all is. I ate some food, Gardeners’ Question Time came on, and I had a half-nap. My eyes have needed to rest for a lot of the day – I am going to not do the new eye drops again until I go home, because I can’t have my sleep any more hindered than it is already. Christine left at four to get the trains back to London, and I watched films on Netflix with Mommy until it was time for her to go too.

I had my evening vancomycin shortly after six, and now it’s half past nine and my ciprofloxacin is supposed to be here. I’m going to take the rest of my drugs, then put on my pyjamas and try to get to bed as close to ten o’clock as possible. I need a proper rest.

The 22nd of May. 

As if things couldn’t get any worse! My arm has swelled up EVEN MORE.

The antibiotic schedule is still going okay. My vancomycin went up at twenty past six this evening so the morning dose should happen on time. The ciprofloxacin is still to be brought but I have impressed upon tonight’s nurse how it is important that I have sleep.

Had the doctors round early this morning and found out that my bloods are being very slow to come down – my CRP was 37 yesterday from 45 on Friday so it is taking its bloody time. Also Ben mentioned that I have a pocket of pneumonia in the left lung and some airway infection on top of that so no wonder I have felt so awful. I showed him my arm and he is aware of it but he could see that it is worse so he said he would chase Andrew. This had all happened by half past nine so you could understand me expecting to see somebody from the vascular team today. No such luck.

My eyes have been bothersome all day, so I’ve spent most of it with the radio on, putting eye drops in, trying to rest them. Waiting for Andrew/an interventional radiologist/a vascular doctor to appear but no one came. We tried asking the junior doctors mid-afternoon but they just knew that there had been emails.

Philippa and Kirsty from the liver team came to see me and they were very shocked at the size of my arm. Kirsty couldn’t stay long, but Philippa had time and she sent an email to Dr. Ferguson because they have an MDT meeting tomorrow. I’m getting as many people on this as possible because it has been five months and now it’s actually getting worse, it has got to be fixed. I can’t carry on living like this.

The 11th of May. 

Shortly after tea last night, we decided that my breathing was so poor, a trip to A&E was required. I was just coughing and coughing, and I needed 3 litres of oxygen just to be comfortable. My chest was tight, and I couldn’t get a deep breath for the life of me.

Because I was having trouble breathing, and my recent history, I was whisked through A&E pretty quickly. I was seen by a sensible doctor who took some blood and sent me for a chest x-ray. Thankfully my lung had not collapsed again, but I have got some fluid on there which looks like infection and my CRP is 93 so antibiotics are required. It was a good thing we’d brought a bag.

I got to CDU at about half past midnight, so Mommy quickly unpacked the necessary stuff and went home. I was up for a little while longer, getting admitted and brushing my teeth. One of the old ladies in my bay talked in her sleep. Constantly. Last night’s gem was “That’s a good girl, now get in the cupboard.”

Managed to sleep through breakfast, got up to go to the bathroom and clean my face, then curled up on my bed again and slept for the rest of the morning until Ram suddenly appeared. I assume because he’s my named consultant, he must get notified if I get admitted. I told him what was going on, but because it is a chest problem, he doesn’t really have much to input.

Mommy arrived just as he and his minions were leaving, and she had brought coffee and food. I still found it difficult to rouse myself, just sat up every so often for a mouthful of coffee. Eventually I consumed enough to wake myself up, and for the rest of the day, I have tried to stay upright. Daddy came earlier than usual, but he was sleepy too, so we sent him home so he could have a nap and give some attention to Sam who will be confused that I haven’t been there to pet him.

Ben came to see me and we had a chat about my lungs. I told him what I’ve been telling everyone else, that I had been getting better but for the past few days everything’s been getting worse again. He said a curious thing about my x-ray in that one side is more lucent, that is to say more see-through, than the other. This could be caused by a stenosis. ANOTHER STENOSIS YOU SAY? HMMM. Need a CT with gadolinium. He wants to talk to Andrew but Andrew won’t be back in until Monday. Gah.

I am in a bed on 517 now. Meropenem for a few days, see what my CRP does. I’m in a bay which I hate because I have no control over when the lights go out or come on or if people are noisy or in the bathroom when I want it and I don’t like it at all. I don’t want to be here again but I have to and it is wank.

The 12th of May. 

I had a terrible night and start to the day, but thankfully since mid-afternoon, it has been greatly improved by the fact that I have been moved into a cubicle.

I was forced awake by loud chatter in the bay between the two old women and two auxiliaries, and the woman opposite me has been playing Radio 1 as loud as the radio will go through the headphones, which is loud enough to have to raise your voice to talk over. She did not seem to realise that this is terrible bay etiquette.

Because of the terrible night, I felt like garbage, but the nurse had promised me a cubicle today, so I asked Mommy to come in early to help pack up my stuff if that happened. That obviously didn’t happen until later, but I was glad to have her there so she could draw the curtains round and I could have a cry about how ghastly everything was.

It seems this ward is where they send all the old people who come in to A&E with relatively short-term issues, and people with mental health issues that aren’t being taken care of by any other service, so it is really not somewhere I belong. However, Mommy ran into Ben and he said 516 is full of the over-90s so I might be here for a few days.

Some haematology doctors came to see me, but they had not much to say apart from let’s get some bloods done to see what your CRP is. No respiratory ones but they wouldn’t have much to add yet anyway so no great loss.

Around 3 o’clock, the nurse in charge poked her head in and said they were just clearing a cubicle for me. Thank god. I could not shove my stuff in bags fast enough. Now I might be near the nurses’ station but I’ll stick my earplugs in tonight and the Zopiclone will do its job.

My breathing is not as bad as with the pneumonia but I feel arguably worse now than I did in March. Like I am listless and have no appetite, and I am just exhausted of this bullshit. Can I please be well? Just for a little bit?

The 13th of May. 

Having my own room certainly makes a difference. I slept much better, until half past eight when someone came in to ask me about drugs, to which I said NOT DRUGS TIME YET and went back to sleep until ten o’clock.

The consultant of this ward came to see me this morning but he hadn’t got much to offer. My CRP has gone up from 93 on Wednesday to 139 yesterday so the mero has yet to take any effect. Great, thanks.

Mommy came at lunch time, and Becky arrived shortly after to spend the afternoon. She and Mommy did most of the talking while I coughed and flailed around on the bed in various positions trying to find one that was comfortable for longer than thirty seconds. I was not successful. The usual school and cat chat which is a nice distraction for me. At some point, Tim from haematology came, and he was asking which antibiotics I am allergic to. It turns out that they’re the ones that they would add in with mero to cover a broad-spectrum of infections. Stupid unhelpful body. If I could bring up some cack they could test that and find out what bug it is, but this is the driest cough in the world so that isn’t happening.

That is all I really have to say about today. I still feel like trash, the drugs aren’t working and I am desperate to go home.

 The 14th of May. 

I’ve done less coughing today, but I think that’s because I have done more lying down. Usually, lying down makes it worse when I have a cough, but this time it’s the other way around.

I woke up about ten again, and quite early in the morning, a doctor came to take some blood but the results are still not in which is most bothersome. I highly suspect that the mero is not working because when Mommy arrived with lunch, I was really cold, and that is because I was spiking a temperature. Haven’t done that since sepsis in 2013 but I don’t think we need to worry about that just now.

Pretty much my entire afternoon was spent lying down and trying to get back to a normal temperature while listening to whatever came along next on Radio 4. It’s quite clear I’m feeling ghastly when I don’t think I need to be able to see.

Mainly I have been thinking about how much I want it to be tomorrow because all the doctors will be here and we can have a chat about what the fuck is going on and how it can be fixed so I can leave here and go feel like shit in my own bed.

The 15th of May. 

I am sick of this. I have spent my whole day waiting for people. Mostly, it was doctors. I had spent the whole weekend waiting for it to be today so I could speak to the respiratory doctors and they did not materialise until nearly four o’clock.

This morning, I saw the doctor from this ward and the haematology team, but they had nothing really helpful to say apart from that they’d speak to the respiratory team.

So about four, Ben turned up with an ultrasound machine. He’d had a chat with Richard and they want to know where the infection is coming from, and so do I. The ultrasound machine was to check on the fluid in my lungs, but there’s only a small pocket at the top of the right lung so that isn’t it. He’s changing the antibiotics from meropenem to vancomycin and ciprofloxacin, and I’ll get onto that later. He’s also going to request a PICC because I’ll need vancomycin levels taking and my veins won’t be able to cope with that, and an echo because I’ve had some vascular trauma and hey why not? If those don’t work, then we get a PET scan to search for the source of the infection.

I am pleased to have a plan but I still feel awful, and the vancomycin has compounded things. It took two hours for a nurse to set it up, and pretty soon it started leaking out of the dressing. This was just after half six, so Mommy and Daddy left and they let the sister who’d set it up know. Someone finally came in just after eight, and she just set it running again but really slowly and hoped that would work, but if it didn’t, to buzz again and she’d sort it out. It didn’t, it just started leaking again, so I pressed the buzzer again. And again, and again. Only to find out after ninety minutes that there wasn’t actually a qualified nurse on the ward and now it’s past ten and this cannula is going to have to come out when one finally appears.

This is the worst I have ever experienced in terms of staff shortages.

The 16th of May. 

Well I finally got my vancomycin. At half past six this morning. The nurse that I’d had for the past four nights came in for a fifth, unexpected consecutive shift because there were no staff across the board, it seemed. She took the cannula out, but then I couldn’t have a replacement dose until I had a new one and that was going to be very low down on the night doctor’s list of jobs. They finally appeared at about half past six this morning, but I had my eye mask on and ear plugs in so I was pretty unaware until the vanc was finished and it was time to get up.

The first thing that happened today was that I went for an echo. I looked very pitiful in the waiting room, hunched over in the strange, triangular wheelchair with my oxygen cylinder, coughing like a Victorian street urchin with TB. The receptionist got me some cold water, and thankfully they took me through quite quickly. It was probably the fastest echo I’ve ever had – I used to fall asleep in them but today I didn’t even have chance to get comfortable. That may have been because the test wasn’t going to find what the doctors were looking for, as I think I heard the technician say. Oh well.

This afternoon, I did a lot of coughing and flooping about on the bed. The cough has evolved into the kind where I do it less, but when I do, I cough and cough until the piece of phlegm moves, and then I am fine again for a while. Philippa from the liver team came to see me, and was telling us some vastly entertaining stories about the ward, when a porter rocked up to take me to angio for my PICC line! Surprise!

We had great fun downstairs because the ward hadn’t done a checklist, because they never send people for things like this so they didn’t know they had to do one, and then I’d been eating and drinking and had nail varnish on. That didn’t seem to be a problem though, so a doctor called Mr. Singh came to chat to me about what we were going to do and I signed the consent form.

It was not an easy one today. He kept coming up against an obstruction in my vein, which I could feel him trying to shove past (newsflash: not enjoyable!), and two other chaps behind the screen were shouting advice at him while I clenched my jaw and wished I had nice veins. He ended up inflating two balloons so he could get the catheter past, then he finished tunnelling it in and I could finally relax.

I want to go home. I say it every day. Not going to change.


The 9th of May.

Stupid eyes today. Not sleepy, but painful. I have a review at the eye clinic coming up next week so I’ll bring it up then but ugh. It is just so frustrating when it seemed to be getting better.

This morning, I wrote up a blog post, and tried on some dresses I’ve ordered for John and Maddie’s wedding. I’ve got to find something that will accommodate or disguise my arm because I can’t wear what I originally planned to. One of the three is okay, I think. I need to look at it again before I send the other two back.

This afternoon, I’ve been sitting with Sam and I watched the last two episodes of 13 Reasons Why. Shit, I can see why it has caused quite so much controversy – watching Hannah slit her wrists is really horrific and I found myself holding on to the cat quite tightly to cope. I related to the moment before she got in the bath, when she looked in the mirror. Like she was saying goodbye. I feel like I’ve got to that place before, but I have always turned back. I have never really needed to die, I have just wanted whatever was so bad to be over, and I hoped that life would be better afterwards. I always have hope. Which I suppose it’s part of what keeps me here.

The 10th of May.

I have felt like total crap all day. It began with a pretty terrible sleep, because I had to sleep in Christine’s bed last night. Yesterday morning I spilled orange juice on my carpet, and the carpet cleaner smelled so strong, I couldn’t sleep in there and comfortably breathe.

This morning I had a chiro appointment, and it was all a struggle. I got myself into Trine’s room and she found that the muscles in the left side of my back were very stringy. I don’t really know what that means but it wasn’t very pleasant, having them made un-stringy. It is probably from sitting in my wheelchair all weekend at Mach.

I was supposed to be at the dentist and hygienist this afternoon but I could barely breathe just sitting up, so doing it with lots of instruments in my mouth was not going to happen. Cancelled that.

So, I had my lunch, watched new Pretty Little Liars and iZombie, then curled up on the sofa to have a rest/nap. I put on a Gardeners’ Question Time and closed my eyes (which have been hurting too) and I think I did occasionally nod off. I certainly remember jerking awake. Not really sure what that means for me as I can only sleep in the day when I’m poorly, so I’m really hoping it was just because I’m knackered.