Monday 21st January 2019
“I love to smile, even through pain.” — Victoria Arlen

Well this will be one of the more eventful days to write about ! 10.30pm last night, I went to bed, temperature was 37.1 and normal. My back was hurting a bit, I thought that was from doing a little outdoor DIY yesterday. I’d sat watching TV with the back massager pillow Jayne got me in my care package a few weeks back but it didn’t help the pain.

We went to bed around 11pm, and I struggled to get comfortable because of my back but I managed to drop off because I was absolutely knackered. At about 2am, I woke up tossing and turning in real pain. I can only describe it as if somebody had put an electrode in my back and was electrocuting me every 2 or 3 seconds. Whether on my side, back, sitting up, curled up, spread out, it wasn’t going away and was actually getting worse.

As is habit now, I thought I’d take my temperature as I felt a little warm and it was 37.8, above the 37.5 where you need to seek advice. Over about a half hour period, during which time Jayne woke and joined in the fun, it went up to 38.8 and peaked at 39. That’s serious stuff. By this time I can’t even stand without my back jolting me all over the place, and I’m uttering regular semi-uncontrolled expletives because the pain is so intense, whilst getting a sweat on from the fever. No other real symptoms though. At this point I’m still assuming the back pain and fever are separate, but the fever is the more concerning in the context of the chemo.

Jayne called the chemo hotline, and they said straight away I was to go into hospital. They called back to confirm they had a bed. I tried to call my Dad to take me there, but to start with I got no answer, so Jayne had to call 999 to ask for an ambulance to take me there. One was ordered but they said it would be some time because they were busy. I tried Dad again and he answered (yes it’s 2.45am at this point) so we cancelled the ambulance and Dad came to take me to The Christie.

We got there about 3.45am and I went straight to bed 18, Dad went home. Within 10 minutes I had a cannula in and was given a large syringe full of antibiotics, metronidazole. This is “protocol.” Not long after, a Dr came to see me, really nice chap. The nurses already surmised it could be a kidney infection, and had taken swabs for viruses, MRSA (they always do this,) a good few vials of blood, and a urine sample as they usually would. The Dr agreed it could be, but that we would need to wait for the blood test results in the morning. I got paracetamol and codeine to stop the back pain, which at this point has calmed and I can sit in one place jerking about rather than having to be on the move. He said the antibiotic was the strongest on offer, and that under the circumstances I’d be in for 48 hours minimum.

The painkillers kicked in relatively quickly having gone in via IV, and I could finally lie pain free. However I was wide awake, and now on a 1 litre in 1 hour drip of saline, so the usual regular trips to the bathroom kicked in. After that, a 1 litre over 8 hour drip. Chris in the bed opposite was chatty too for 4am in the morning, chatting about Manchester United’s recent resurgence, how long he’s been there and how he’s stage 4 terminal with only a glimmer of hope from a clinical trial. Tough chat, that grim reminder again it’s a potential killer we’re dealing with.

I was starving, so I asked if I was ok to walk to the vending machine, but the nurse offered to make toast instead. I ate it and stayed up until about 6.30am until my drip was changed, then got some shut eye until about 8.15am when I smelt breakfast. The nurse did my observations, my temperature was back to about 37.1 in the morning, so something had worked. I ate my weetabix and the consultant came to see me just as I’d buttered my toast.

Much to my surprise, after we chatted through my version of events, he told me what he knew so far and said that they would send me home about lunchtime with 2 lots of antibiotics in tablet form, send me for a chest x-ray before I left, then call me back on Wednesday to look at the vast array of results they will have by then. He was unsure what the infection was, but was happy I could rest at home. The antibiotic approach may change on Wednesday when more is known. He again was really nice, great bedside manner. He said I’d done exactly the right thing, calling in, being admitted etc. I liked that, as when ambulances and urgent admissions are involved, you want to be sure it’s warranted and you’re not wasting anyone’s time.

Shortly after, he returned with my oncologist, and he seemed happy at this point I’ll be ok for the Bleomycin on Friday, and the next 3 day chemo a week today. I slept for an hour or so, then around midday my drugs were ready, the cannula came out and I was free to go. Lunch arrived just before I was due to leave, another 3 course meal.

So Dad picked me up again, and I’m home now to rest. I had paracetamol and (less) codeine this morning again, but I can feel the back pain returning. A painful ache now, not a constant stabbing pain. I’ve got some sleep to catch up on although I’d rather save it for night time in case my back hurts again, I’m more likely to sleep then.

Aside from all that, I did the obligatory tug at my hair today, and for the first time, it’s starting to give. Not in huge chunks yet, but there’s 3 or 4 hairs coming out with each pull. Weirdly but not unexpected, it’s not just the hair on my head. I blew my nose and noticed nose hairs coming out easily. Either way, its started 😦 I’ll hold onto it as long as I can (I’m still in denial) then I’ll have to set about it with the clippers. Should I sport a mohawk for a day ? Not a style I’d ever go for under normal circumstances but I’ll never have the cause to do it again… Suggestions on a postcard…

6.30pm – My back pain returned to being a bit jolty about 5pm so I nipped to the pharmacy and got some codeine / paracetamol mix, that’s took the edge off it again. I find sitting with good posture helps too, I suspect so much time recently on the sofa with my feet on the footstool may be a contributor. I keep accidentally pulling some hair out, it already seems to come out a little easier than it did earlier this morning. Finally, I’ve managed to avoid napping and should do up until bedtime, so hopefully I’ll get a good nights sleep. I sure need it, followed by a pure day of rest tomorrow.