A storm in the Khumbu Valley
My Allograft 2018/19 – 24. 21st July 2019
By Andy Burrows, 21 July 2019
Irony and poetry
There’s a certain poetry in where I am right now.
Because where I am right now is in the Wessex Ward in Basingstoke Hospital in the same side room I was in almost 12 months ago when I had my first round of R-ICE chemo at the start of this saga (before the stem cell transplant).
I’ve been using the analogy of an Everest expedition and summit climb for a while, and this feels like I’ve come back to one of the first stops on the Base Camp trail on my way home.
It’s like seeing it as a familiar place, rather than something new, with none of the anticipation and anxiety of the massive climb ahead. But nursing the bruises and muscle-ache from all that is now behind.
By now the horrors and harshness of the great mountain itself are dim in the memory, leaving mainly pride in the achievement and a longing for the trip to be over. Home, normality, is what I want now.
So, however familiar the place and people, having to stop again before getting to the airport in Kathmandu (perhaps imagining there’s a big storm in the Khumbu Valley or something) is something of an irritation.
The reason I’m here again in Wessex Ward is because of an infection.
And it’s so ironic that I was only saying in my blog last week that it’s easy to get complacent in avoiding risk after being careful for so long.
So, in one way it’s a useful tangible reminder – to myself, to fellow patients, and to friends/family/readers who might think I’m being overcautious – of the danger, and of how quickly things can turn.
It’s also a proof that the medical team is right – the journey isn’t over yet, and won’t be for a while. I may be homeward bound, but there are still a few things to navigate first.
I know by this stage there will be a couple of people thinking, “can you just skip to the facts now Andy!” So, I will! And to help with that, I’ll put a little subheading right here:
To the facts – An infection and hospital admission
Friday 12th – A walk in the New Forest
Looking back now, something probably wasn’t quite right even before Heidi and I went for a long walk in the New Forest on Friday 12th July.
I found that walk particularly tiring, especially towards the end (but in the middle too if I’m being more honest than I was at the time). And it puzzled me, because we’d done the same walk two weeks earlier and, whilst I’d needed to sit down half way round, I’d coped better with it overall.
“This isn’t following the right trajectory!” That’s what went through my head.
I decided to rest over the weekend – not even local dog walks.
Monday 15th – Is it a cold?
But by the end of Monday 15th I was starting to feel like I had a cold coming. I’d been sniffing all day, and then my nose started to tingle in a coldy kind of way. I was already thinking of phoning the hospital the next day. It just depended on whether I got any better or not.
Tuesday 16th – Or is it worse?
But it got worse. On Tuesday morning I was shivering and aching as if I was starting with flu. I took my temperature and couldn’t get a good reading. So, I phoned the nurse specialists in Southampton Hospital anyway. She said I’d better go in and be looked at, because the fact I couldn’t get a temperature reading might mean that there was an “underlying” temperature, and because I felt unwell enough to call.
Fortunately, since we live next door to Basingstoke Hospital, and since I know all the Oncology/Haematology staff pretty well, I could just phone them and then walk round.
So, I spent Tuesday sat on the bed in the Acute Oncology area being assessed. I had blood tests, a good old ‘snot test’ (NPA), throat swab and chest x-ray.
By about 3pm, they’d found no evidence of bacterial infection, but admitted that my inflammatory marker (CRP) was raised.
Tuesday 16th – Is this tennis?
So, they sent me home, thinking it was just a virus that they couldn’t do much about. But they told me to come back if I felt more unwell or my temperature went up over 38.
I’d had three sets of obs all day. The first, in the morning, showed a temperature of 37.0. The second, 37.4. The last, just before I went home, was 37.6. I had a resting pulse of 95-100 and lowish blood pressure.
So, I asked both the doctor and the nurse what the point was in going home, when my temperature was clearly trending towards a point where they’d want to see me again. I didn’t get a satisfactory answer, but I went home anyway.
Andy, lo and behold, by 4pm I was phoning them back saying my temperature was 38.3…
… Only to be told that Acute Oncology doesn’t take people in after 4pm, so they’d have to make an arrangement with AAU (Acute Assessment Unit), which is the general emergency admissions route (alongside A&E).
By the time they assessed me and got me into a side room in AAU my temperature had reached 39.0 and I was feeling bad.
In went the cannula and up went the drip giving me antibiotics and fluids.
I was moved to a general ward upstairs (in a side room) at about 1am, and slept reasonably well until about 5am.
Wednesday 17th – A quick recovery
I woke so early because the hospital room curtains were broken, so the sun started streaming through the window!
The other remarkable thing was that I felt fine! No aches or shivers or pains or anything!
Obs confirmed that my temperature was normal, pulse back to around 70, blood pressure normal.
The doctors, when they came to see me, (including the ones I’d seen on Tuesday in both the Acute Oncology area and AAU) asked me the same questions repeatedly!
They were very interested in the fact I’d noticed feeling less well than normal while walking in the New Forest.
I asked my haematology consultant about that when she came to see me later on in the day. She said that it was because the New Forest is known to be a bad place for being bitten by ticks, and particularly bad for Limes Disease… which would be very bad for me. Interesting!
The other thing that was interesting was that at one stage late afternoon a nurse came in wanting to do a “positional” blood pressure reading. What they do for this is to take your blood pressure reading when you’re sitting/lying down, and then compare it again when you stand up.
My blood pressure dropped significantly when I stood up, and I felt dizzy.
Again, I asked the consultant about this, and she said it was related to my being on hydrocortisone (I don’t expect you to be remembering any of this!!!). Apparently when you’re ill you need more, so she told me to double my dose for a few days.
I was also low on phosphates, so they prescribed some soluble tablets to rectify that. Funnily enough, I’d complained to the nurses that I was getting cramp quite a lot… low phosphate causes cramp. Funny what you learn! The other thing is that this, too, is linked to my adrenal gland problems, which lead to me needing hydrocortisone!
Normal protocol with post/mid-treatment infections is to stay in hospital at least 48 hours.
However, since I was looking well, and I had an appointment booked in Southampton the next day, the doctors agreed to let me go home around 8pm so that I could “close the loop” with my primary medical team.
Thursday 18th – Deja Vue (almost)
Thursday started weirdly. I was supposed to be picked up by Patient Transport early for a meeting with the psychologist at 9:30am in Southampton, so that I could attend my weekly clinic straight after.
It turned out the transport had been cancelled because they thought I’d still be in hospital in Basingstoke.
So, I had a quiet day, feeling fine, lounging around the house doing bits and pieces of Supercharged Finance work and browsing Facebook etc….
… Until about 3pm when I started shivering (on a hot day). I rolled my eyes and took my temperature… 37.0 degrees… better keep an eye on that, I thought.
By 3:50pm my temperature was 38.5, and it was time to phone and make arrangements to be admitted again.
By 4:30pm I was packing my things with a temperature of 39.7 and shaking uncontrollably.
Tom, my son, drove me round to the hospital entrance because I was so shaky.
I sat in AAU reception wearing a mask for half an hour or so, and then my haematology consultant came to find me. She’d found me a bed in a side room on the Wessex Ward, the specialist oncology ward, which I know and love, where my favourite specialist doctors and nurses work… and she found a wheelchair and pushed me herself through the corridors and up 5 floors in the lift.
Another cannula… back on the IV antibiotics (“industrial strength”!)… tucked up in bed under double covers shivering, not wanting to move, everything mentally foggy… midnight, second dose of paracetamol… sleep…
Friday 19th – Even keel
… 2am obs, temperature down at 36.5 degrees… covers kicked off… back to sleep…
… 6am more IV antibiotics, more obs, temperature still fine… mental fog gone… no shivers or shakes… no headache… what was all that about?!
An old familiar routine
It’s now Sunday afternoon. I’ve felt fine since I opened my eyes on Friday morning. But I’m still in Basingstoke hospital.
The only anomaly I’m being told about is the CRP, inflammatory marker that indicates possible infection. That’s coming down but still high. Every other test (and they’ve done quite a lot) has come back not indicating anything of concern.
This time they are proceeding on the basis of caution. They will not let me go home until they’re confident I’m not going to have to come back again too soon! The CRP level will have to be in the region of zero where it should be.
That means that I could go home tomorrow (Monday 22nd), or it could be later in the week.
So, I’m back in the old familiar hospital inpatient routine.
I was trying to find the right adjective for how I was feeling about the fact that being in hospital (either inpatient or outpatient) is so familiar. Sad? Strange? Amused?
Other people go to work. I go to hospital!
I walk into the ward (this applies in Southampton now almost as much as Basingstoke)… I get waved at and smiled at by receptionists, nurses, healthcare assistants, as if I’m pitching up for work! I know consultants on first name terms. I can pick up the phone direct to nurse specialists, no switchboard, no IVR.
There is no adjective, really. It is what it is. People are people. Days are days. Events are events.
The only question is what kind of person am I going to be, wherever I am, whoever I meet, whatever day it is, whether I feel well or feel ill.