Archives For qehb

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 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache. 

The 29th of May. 

Very little to report. Except that the vancomycin and ciprofloxacin appear to have finished! Well, tonight they are not prescribed so presumably they only had it written up until this morning. Which is fine, it means I need literally nothing from the nurses tonight and I can go to bed whenever I want. 

When Mommy arrived at 11, we left straight away because the nurse said I didn’t need to see any doctors and I didn’t need any bloods doing (I thought I did, but she said not). We got home before This Morning had even finished! Amazing. The weather demanded I have beans on toast for lunch, so I ate that while we watched the finale of Project Runway which had been on since I was admitted. 

My legs needed shaving if I am to wear a dress on Saturday at the wedding, so this afternoon I had that task to undertake. It wasn’t fun, strong smells make my breathing more difficult so I was on three litres of oxygen by the time I was done. Everything is so hard. 

We came back to hospital for six o’clock, and it emerged that the phlebotomist had been because I was supposed to have bloods done, so then a doctor had to come and stab me. He had to stab me seven times. For one syringe of blood. My veins just didn’t want to play, I was cold, and he had to seriously dig around. I am going to be quite bruised. 

Nothing else to say. I can’t wait to see the doctors in the morning. I need a plan. I need to go home. 

 

The 30th of May. 

I write this AT HOME. And I don’t have to return to hospital tonight, I am going to sleep in my bed and no one is going to take my blood pressure or shout at me about toast and it will be beautiful. 

Mostly my day has involved waiting. The doctors turned up just after half ten, just a junior and a medical student (after my notes were found as it seemed they’d gone AWOL) and she was pretty happy to discharge me, considering I’m not on any IVs anymore and my CRP has gone down to 18. However, she needed to talk to Ben about my blood pressure drugs and the rest of my discharge plan before I could actually go home. 

He was in coroner’s court all morning, so we didn’t see him until about two. He is happy to restart my Irbesartan which will be good for my blood pressure, and I’ll stay on the voriconazole for a couple of weeks. The PICC will stay in until after I have been deflated because a) it will give them good access for the fun drugs and b) it will be useful if I relapse, so we will have to flush it for a couple of weeks. The only other thing left to sort out was my drugs to take home, and the junior said she’d come back to get a list of what we needed. 

She then didn’t come back until after four, so we had a very boring afternoon, trying to pass the time. Thankfully Philippa also came to see me, so we had fun, and we finally got to leave just after half past six! 

Got a really busy day tomorrow so an early night tonight, but considering I don’t have to wait for anything, I think I’ll manage. That worst part will be climbing the stairs. 

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 23rd of April.

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

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

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

The 24th of April.

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

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

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

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

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

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

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