Friday morning, 4 April, saw me not-quite-leaping, more like cautiously rolling my stiff self, out of bed at an early hour to go off to volunteer at a Register & Be A Lifesaver [R&BE] stem cell register recruitment event at Chellaston Academy school in Derby.
The school are very supportive of R&BE and the teachers made us welcome, while the Year 12 students waited patiently and good-humouredly for their turn to spit into our little tubes. Despite not feeling 100%, I did my bit and between four of us, we registered 77 eager young people. It was an excellent morning’s work.
I got back home late morning and gradually began to feel less and less well and more and more incredibly sleepy and shivery, until I gave in and fell asleep on the couch under a blanket. I had an appointment for an MRI scan at 6:30, which I thought I might be able to make, but I slept right through until the ringing of my phone woke me up. It was already 6:30 and the scan department were asking where I was. I apologised but there was nothing I could do. I felt dreadful. Even if I had been awake, I wouldn’t have felt able to go. The appointment would need to be rearranged.
A bit later, I fed the cat, had a drink and crawled upstairs to bed. I managed to remove most of my clothes, leaving them exactly where they fell on the floor, and collapsed into bed in my t-shirt and knickers. On Saturday morning I realised that I’d gone to bed without removing my contact lenses, so I removed them and found that my eyes were so dry and sore that I couldn’t see or even open my eyes fully. Then I just slept and slept and slept, with brief awakenings for cat feeding, the odd drink, toilet visits and teeth brushing because my mouth felt so disgusting. The teeth brushing didn’t do much to alter that.
I was supposed to be on training on Saturday afternoon for a new voluntary project I’ve recently signed up for, with Nottingham Nightstop, being a host for a homeless young person for a couple of days a month. I knew I couldn’t make it, but I also couldn’t see any details on my phone to call to let them know I couldn’t come. I wrangled with my sense of responsibility for a while until I realised that there was nothing I could do and I would just have to deal with it later.
Despite alternately shivering and sweating, when I took my temperature, it was its usual 36 point something (just below what is considered normal, 37°). It even went as low as 35.6°. I did not have a temperature. I was surprised but very relieved.
Like any post-transplant patients, I have to be careful about infections, the best indicator of which is a high temperature, i.e. over 38°. If my temperature gets to 38° or over, I am supposed to call in to the hospital and as has happened in the past (in August 2011: here and here, then in December 2012: here and here), I know they will want me to come in for tests, treatment and monitoring.
Both previous times, the infections were quickly and easily treated even though they didn’t manage to identify exactly what bug I had and I was discharged after two nights each time, which is for me, two nights too long to be in hospital.
So when I woke on Sunday, like a good girl, I took my temperature again. It was now 37.1°, which is by no means high, although a little raised for me. For some strange reason, I decided to check again and this time, only a minute later, the thermometer read 38.5°. Struck by the difference, I took it again. This time I was distressed to see that it had risen to 38.6°. Now that is a high temperature!
I called the Haematology pager holder and was gratified to hear one of the Myeloma specialist nurses, Jenny answer. As I described my situation, she recognised my voice, which was most comforting, particularly when I was feeling so dreadful and alone. As expected, she told me I’d need to come in. And, also as expected, there were no free beds on either of the Haematology wards. I would have to go to SRU (the Specialist Receiving Unit).
I duly packed a case for about two days, asked my neighbour to feed my cat, Myfanwy Lovebug and dressed in a fashion… By which, I do not mean fashionably; I mean, I just put a dress-like nightie on, with no bra or socks, just boots and a big cardigan… and knickers of course… You can’t go anywhere safely without knickers!
Still feeling woozy, I gently and carefully drove myself to the hospital and checked in. No, it’s really nothing like a hotel, but what other term could I use?
Having tried to cannulate me a few times in my arms and hand, without any luck, they took blood for cultures out of my Hickman line. They weren’t keen to do this initially, because a Hickman line is a prime source for infection, so a ‘purer’ blood sample from a different site would be better. Alas again, my veins weren’t playing ball.
On Tuesday, having filled me up with fluids – I’m not joking, I put on about 4.5kg just from the fluids… and most of that in my feet – and two types of broad spectrum IV antibiotics: Vancomycin and Tazocin, they advised me that they’d grown a culture of staphylococcus aureus from my blood.
Here’s the science bit:
Staph. aureus is a common and pretty harmless bacterium found in the respiratory tract and on the skin, but in the blood it can be life-threatening, because the bacteria can travel through the bloodstream and infect almost any site in the body, particularly heart valves, bones and lungs, leading to endocarditis, osteomyelitis or pneumonia.
Apparently, and clearly what happened with me, the bacteria can accumulate on medical devices in the body, such as a Hickman line, which is inserted through the skin into blood vessels.
And I’ve just found out that MRSA, which all in- and out-patients get swabbed for on a monthly basis, actually stands for meticillin-resistant Staphylococcus aureus. I never knew that.
They swiftly changed the antibiotics to Flucloxacillin, which has a much narrower spectrum of activity and is indicated for staph. aureus amongst other bacterial infections. Unfortunately, I had to continue with this regime by IV for a week, four times a day. That meant that I had to remain an in-patient.
The previous day I’d got it into my head that I’d had enough of being in hospital and that no matter what, I was going to leave the next day, even if it meant attending for treatment several times a day. The doctors, whom I trust, however, had other plans for me.
The news made me completely miserable. I am taking part in a year-long Certificate in Playback Theatre Practice, which takes place over nine months from March till November and that weekend (11-13 April) was the first of two workshops on Conducting. And no, we’re not talking about orchestral conducting. It’s about the role within Playback Theatre of the MC or director, the person who invites members of the audience to share their stories and invites the audience to “Let’s watch…” All I can say is that missing this weekend was a total bummer. I was so looking forward, not just to learning and participating but also to seeing some Playback friends from the previous workshop and from other Playback gatherings. Boo hoo!
But I had to just ‘suck it up’, as they say. Which I did and eventually, after a couple of days of sulking, I came around and surrendered to the inevitable. The inevitable also included being cannulated a total of five times over only eight days.
While I was in, partly due to how disgusting I find hospital food and partly due to the nauseous side effects of the antibiotics, I couldn’t eat a thing. I kept my fluid intake up but my stomach was grouchy and gurgling and that alone made me feel dreadful. Not even mentioning a few bouts of incontinent diarrhoea, brought on by the bloody antibiotics. Oh joy!
On Friday evening, my good friend Janet came to visit, complete with clothes she had fetched from my house and a Chinese take-away. I gobbled it down and we had a fun, if somewhat odd evening, chatting, eating and sorting out a knitting project that I had messed up, while ignoring the fact we were sitting in a hospital room. It alleviated the gloom I was feeling, but later my stomach revolted and gurgled into the night, along with a further unpleasant diarrhoea experience.
Finally, Monday came around and I was so happy to see Mark, the registrar, who told me I could go home. That was around 10:00. But of course, nothing is as smooth as I’d like and the oral antibiotics that I still had to take for a further week had not arrived from Pharmacy. Bloody typical!
I was not to be deterred. The nurse, Matt gave me my midday dose to take with me and I agreed to return later to collect the rest. I trotted off to spend a restful few hours at Maggie’s, on the hospital campus. I went across town for my 2:00pm Tai Chi class and returned after 3:30 to find that the lift up to the ward was not working. I climbed the stairs slowly and when I arrived at the second floor, was annoyed but not surprised to find that the blasted drugs had still not arrived.
Nurse Matt came to the rescue by offering to go and fetch them from Pharmacy, so I waited patiently in the Daycase waiting room and finally by 4:15, I left hospital properly and completely… with only the need to attend clinic again on Thursday. It’s never bloody-ending!
P.S. Common adverse drug reactions associated with the use of Flucloxacillin include diarrhoea and nausea. And yes, of course I continued with both even when I was back at home – adding to my already dodgy guts from Graft versus Host Disease [GvHD] – along with a mild bout of thrush, which I decided not to bother treating. I’m so sick of taking medication, I couldn’t bear to take anything else, and I only had mild symptoms. As anticipated, it went away once I was no longer taking the antibiotics. I’m getting quite good at being my own medical practitioner these days. Well, there have to be some benefits to this experience!
I’m fully recovered now except for my left hand which still bears the brunt of so much cannulation… One of the veins is raised and a bit hardened, so that in moments of boredom I can run my fingers over it, moving it from side to side, as though there’s a little tube inside my skin. I suppose it just makes me special, right?