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.