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Documenting not dying since October 2013.

The 17th to the 22nd; I can't carry on living like this.

The 17th to the 22nd; I can't carry on living like this.


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 23rd to the 28th; BRING IT ON.

The 23rd to the 28th; BRING IT ON.

The 11th to the 16th; Like a Victorian street urchin with TB.

The 11th to the 16th; Like a Victorian street urchin with TB.