Time to take a chill pill
My Allograft 2018/19 – 27. 24th August 2019
By Andy Burrows, 24 August 2019
Two in the mouth
It’s only another six days on since the last update, and I’m still in Basingstoke Hospital on this hot Bank Holiday weekend.
But this is still going to challenge my memory! It’s been a week of both tedium and frustrating twists and turns, punctuated by the excitement of Anna’s GCSE results on Thursday!
Monday and Tuesday were fairly uneventful. One of the main concerns was that my CRP count (inflammatory marker and infection / something-generally-wrong indicator) was failing to drop. In fact, it had reduced a bit and then increased again!
There was confusion over rebooking the PET CT scan that had been cancelled the previous week at the last minute. Because Patient Transport can be so unreliable, the scanning department in Southampton wouldn’t do an appointment in the afternoon for an inpatient. So, there was talk of trying to discharge me so that I could get myself to an appointment on Thursday afternoon.
But, in the end the doctors thought it best to plan for a Friday 9:45am appointment which I could get to as an inpatient, and then there’d be no pressure to discharge me too early.
With them still talking about a Maxillo Facial appointment for my tooth in Basingstoke, but not able to confirm a time, I decided to relax and go with the flow.
Increasingly, since the start of the week, physically, I guess I would have felt fine if it hadn’t been for increasing pain from a mouth ulcer! It had been there in the background for a week already (probably from all the times I took my own temperature at home), but not painful enough to mention. But all week it’s been the pain that has made me cautious eating, talking, even wetting my lips!
So, I had to mention it, and even got some stronger painkillers to deal with it!
Then on Wednesday, I had my appointment with the hospital dentist at the classic time of 2:30pm (“tooth hurty” – remember the old joke??)!
He didn’t think my tooth was the source of the infection they couldn’t find. I didn’t have tooth ache for a start! But the concern of the haematology doctors was more that it could become a source of infection, especially when I’m already fighting infection of unknown origin. So, they wanted the offending broken tooth to be removed as soon as possible.
The trouble was that the only possible time (and even that would have meant rearranging somebody else on the list) to do the extraction would have been Friday morning, which clashed with the scan appointment, which was more important!
And then confusion
And then, by Thursday the doctors were talking about discharging me on Friday. They wanted me, if possible, to get my own transport to the scan in the morning (to remove the risk of Patient Transport being late) and then go straight home.
That sounded like a reasonable plan. Apparently, even though my CRP count still wasn’t getting lower quickly, I was looking better, and they were arguing that I’d be as good at home as in hospital now that I’d had a good amount and variety of antibiotics. So, preparations for that plan started.
Then on Thursday afternoon I was doing something on my laptop, and an email popped up confirming a PET CT scan appointment. “Oh that’ll be confirming tomorrow’s appointment. I thought I’d already got that, but hey ho!” I thought.
When I opened it, it said… Tuesday 27th August in Portsmouth! What?!
I phoned them immediately, and was told that there’d been a mix up between them and the hospital, and that Friday had never been a confirmed booking! Thursday afternoon had been, however, but I’d missed that!!!! What?! Seriously?!
I ranted for a while at the administrator at the scanning department, and then at the junior doctor in the ward, but relented fairly quickly. Since when has stress achieved anything (for me anyway)?
The revised plan seemed to involve using Friday to try to get the tooth extraction done if possible and then maybe go home. So – sigh – I withdrew further into “go with the flow”! What else can you do?!
And back to square one
I woke on Friday with that expectation. It looked like the dentist appointment was going to happen in the afternoon, so I sat around doing ‘stuff’ in the morning…
… and started shivering… and shivering some more. Within half an hour, the nursing assistant came to “do obs” just when I was wondering… I said to her, “I’ve started shivering, but I bet I haven’t got a temperature”…
… well, yes I did! 37.9C! And high blood pressure too.
So, all Friday’s plans went out the window. Blood tests were arranged, and the doctors considered changing the antibiotics again. But, of course, I wouldn’t be going home until things were back under control! And I wouldn’t be having the Max Fax appointment either.
So, I’m in here for the weekend.
I don’t know what’s different about these antibiotics I’m now being given, except that the IV infusions take longer and are twice a day.
And they didn’t have an immediate effect. My temperature hovered between 37.5 and 38.0 for most of the day, although I didn’t feel hugely unwell with it.
However, by this morning – Saturday – my temperature is normal and I’m feeling alright. Just pretty washed out. Even the ulcer that has been a serious pain the entire week is starting to ease, I think.
“Welcome to the world of allogeneic stem cell transplants,” joked one of the haematology consultants! It’s like being on the end of a yo-yo!
I’m now in the mentality that I’ll believe the plans for next week only after they’ve happened! There’s the PET CT scan in Portsmouth on Tuesday, a Max Fax appointment in Basingstoke (time and date yet unknown), a bone marrow biopsy (Southampton requested that the Basingstoke team fit this in as part of my 6-month checks), my normal clinic in Southampton on Thursday (if I’m discharged by then).
And who knows when I’ll be stable enough to go home!
Taking each day as it comes! Patience is the name of the game!
Time for a temporary pause
And as I reflected on the continuing infection saga, the disruption, the mental energy being used, and my continued desire to “create”, I realised it’s time I gave myself a complete break on the Supercharged Finance side of things. Not just a slowdown, less to do, or looser deadlines.
Someone – one of the most influential Finance people on Linkedin – decided to do a weekly Top 25 “#financemaster leaderboard” for content creators in Finance and Accounting. And I’ve hit the top 10 for the first two weeks. And it’s resulted in lots more contact and “engagement” on my posts on LinkedIn, which was keeping me busy.
It’s great to get the recognition from Finance people all around the world. And it would only do the business good to ride the wave. But right now, I can’t cope with it.
So, for Supercharged Finance, I’ve deleted Linkedin temporarily off my phone, and I’m pausing the blog publishing (which I’d continued almost weekly for the last year), newsletter sending and social media posting. I may not stop writing (just not publishing) or reading. But I need a bit more detachment for a little while. Perhaps it’ll be two weeks. Maybe it’ll be two months.
Getting back on track physically is more important. Perhaps it’s a hasty decision. Sometimes you have to “listen to your heart”!