‘Hello, UCLH Urgent care line?’
‘Hi, it’s Jen. I just finished chemo last week, and I just spiked a temperature of over 38 and probably have neutropenic sepsis.’
‘OK let me ask you some questions. Do you have any problems urinating?’
‘Does the site of your PICC line look infected?’
‘No, no, it’s fine. I’m fine other than the temperature and the fact that my mouth is starting to swell up where they’ve previously done surgery, it does the same thing every cycle.
Wait, what did you say your name was? What’s your hospital number? … Oh, I know you! I thought I recognised your voice! You’re the one who had the anaphylactic reaction to Ambisome in December…
Ah so that’s what I’m known for. They say to work hard until you no longer have to introduce yourself… She told me to come in of course, and commented on the fact she was surprised that I was laughing with her. Well what else is there to do?
So like clockwork, Wednesday came and the temp went up and Clarence and I had to find our way to A&E. Though it was on day 8 this week, rather than the previous two cycles’ day 9. So maybe I’m becoming more in tune to it and caught it earlier, or maybe the build up is starting to effect me more. Or maybe a shorter chemo week makes the effects hit sooner. Who knows.
I suspected it was coming soon, on day 7. I told Clarence we should start packing early because I had a feeling we might get caught out otherwise, so we did some of it then and the rest on day 8. Lots of things to do like remembering to pack all the clothes and entertainment, sorting out two week’s worth of wound dressings, putting any food in the freezer that might go off, vacuuming up the bottle of chilli flakes that fell behind the fridge and broke then finding out that while your vacuum cleaner will do that task, it is otherwise broken… That last one was a bonus.
Oh and remember to turn off the heater when you leave. In the unknowns of the first cycle leading to a lack of forward planning on my part, I managed to rush off to A&E without my kindle and leaving my heating on. Not this time. I’ve learned, baby!
The bed in the ward was ready for me at record early time – around 11pm, only 4 hours after I turned up. But alas, the covid swab took hours to be remembered and then hours to be reported and no one can go up onto the wards without the Holy Grail – a negative swab. In the movie version of my life, The Shins album Oh Inverted World would have been playing while I waited for my bed (and in fact I listened to them until I got more tired and they became far too upbeat). The word came some time after 2am that the swab was negative and once they’d found a Porter, up we all went to T13, this time. I was desperate for another window bay, though I was well aware I’d had a good run recently.
By the time I got to my bay at 3am, I was pretty tired. You can’t really grab sleep while they’re processing you through A&E. Between chest xrays, ecgs, speaking to the Oncologist on call, urine samples, covid swabs, antibiotics, IVs of whatever else, updates on what’s happening, not to mention obs every hour, by the time you put an audiobook on and shut your eyes, someone is coming in and wanting something from you. Then once in the ward it’s all lights on, another list of things: antibiotics at 3:30, 20 min saline flush at 4, obs at 5, bloods at 6, obs again at 7, breakfast at 8.
I didn’t sleep, but thankfully no one was expecting me to much the next day. I’d had a magical couple of days before going in though, 3 days without hospitals. I spent them writing and recording some music, short walks, the most breathtaking sunsets, delicious coffees and loads of pots of tea, Imbolc candle ceremonies, and lots of resting. As long as I don’t have to find energy I don’t have to go out and do things or see people (also my immune system is slowly disintigrating so I can’t safely do it anyway), I’m able to work with what I’ve got and make the most of moments to really feed my soul. And my soul was fed.
There’s a lot of magic to be found within my flat and If it were possible for me to love London or my life any more, then I probably do.
4 Comments Add yours
Jen, thank u fow this lovely message, John xxx
Your posts inspire me and lift my spirits. THANK YOU. Your fan across the pond with MBC
All the best Jen, I hope they listen to you this time.
‘Wait, what did you say your name was?’ ‘Oh I remember you!’ Haha I can imagine this whole exchange playing out. Oh the absurdity of sickness and the hospital system. Glad you remembered to turn your heater off this time x