Round in circles
My Allograft 2018/19 – 26. 18th August 2019
By Andy Burrows, 18 August 2019
Spoke too soon
It feels like an update is appropriate, even though it’s only a week since the last one.
I said last time that it seemed like I’d had a couple of days where things seemed to be getting back on track. The viral symptoms seemed to be gradually clearing up after a month of coming and going, including a week in hospital.
But, as it turns out, a couple of days isn’t really enough to draw conclusions from!
The very next day after I published that post – Monday – I sat in the kitchen in the morning preparing my pills for the week, and started shivering.
I dutifully went and took my temperature, fully expecting it to be trending nicely in line with the previous couple of days, i.e. normal. I fully expected to go and find a sweater and admit that summer was having a glitch.
But my temperature was 38.5C!
And as time went on, the shivers got a little worse and my fingers started feeling numb, and I felt really breathless.
I frowned a little and phoned the nurse specialist in Southampton. She then spoke to doctors in Southampton and Basingstoke and then I got a call to go to Basingstoke hospital and be assessed.
Because I’d tested positive for rhinovirus (common cold) recently, there was an additional reason to keep me separated from the others in the ward. So, I spent the whole day in a consultation room, sat on an office chair.
The Acute Oncology Nurse looked after me, and I saw various haematology doctors at regular intervals.
The bloods were taken, the cannula went in, the IV antibiotics started, and then I was told what I didn’t want to hear – they wanted to admit me into hospital.
However, as it turned out, on Monday, because of a local rock festival over the weekend, there were no beds available in the hospital. (As I understand it this was simply a matter of having an extra 60k people being in the locality, rather than any specific incident.) They thought stacking me in the Emergency Department corridor with the rest of the (12-hour) backlog was probably not good for me in my state of immunocompromise.
So, after my IV finished they sent me home and told me to come back 9am the next day.
As I expected, I woke up on Tuesday feeling not too bad. No temperature or shivers or aches. Antibiotics had kicked in already.
And so, I packed my bags and did the 7-minute walk from our house back to the little consultation room, and sat in the chair….
… All day, until 6pm, as nurses and doctors came and went. I wasn’t on the IV the whole time. Probably only 3 hours altogether.
… And then I heard they’d sorted out a bed in the Wessex Ward (the specialist oncology inpatient ward I stayed in last time). And off I went.
This time there are more tests, more questions, more deep thought…
I was already booked for my 6-month PET CT scan on Thursday in Southampton, so they were going to use that to check for infections as well. So, the plan was that I’d be taken from Basingstoke Hospital to Southampton Hospital (‘nil by mouth’ from 6am), attend the normal Thursday clinic and then have my scan.
However, (I was told on Thursday morning as I waited for transport – which was late) there was a problem with the scanner, and the upshot was that the whole day was cancelled. And so, I stayed in Basingstoke, kicking around my isolation room wondering what was going to happen next (and reading and stuff).
Tick, tock, tick – Thursday, Friday, Saturday, Sunday… and here I am still. I’ve actually moved back to the exact room I was in last time, and the exact room I had my first chemo in last year!
Talk of doing wider tests and scans, doctors asking more questions, more IV antibiotics every day. No more temperatures, but still not feeling 100%.
One thing I didn’t record in the blog, which may turn out to be relevant, is that back in May I broke a tooth.
At the time, the dentist had to liaise with Southampton hospital to make sure that whatever they recommended didn’t come with an infection risk.
The decision was that I have to have two teeth removed (I’ve never had teeth removed in my life, or even so much as a filling!) – the broken one (next to my bottom wisdom tooth on the right) and the one opposite on the left, which is decaying in a similar way.
The other decision was that I should be referred to the Maxillo Facial department in Southampton Hospital to do that job.
I met with them in June and they confirmed it was the right thing to do… but then I had to cancel the appointment because of being in hospital last month.
The reason this could be relevant now is that the broken tooth may be the source of the mystery infection I can’t shake. I had naively thought that I’d have tooth ache if there was an infection there! But apparently not!
So, they may move the dentistry appointment from Southampton to the Maxillo Facial department in Basingstoke, next week if they can.
An uncertain week to come
So, there are a few moving parts and uncertainties.
That means they don’t really know when I’ll be going home (or what’s going on really). Optimistically, Wed/Thurs. Realistically, later.
What the doctors are adamant about, however, is that there is no way they want to allow me to go home only to see me come back again having suffered another two weeks.
They recognise my need to return to “normality” (whatever that is), both physically/medically and mentally.
All at sea
The only reflection I have really is that the ability to live in the present, one step at a time, is harder as the journey feels longer.
The thought drifting across my mind frequently is, “this is such a long journey!” I’ve been on the tedious trek for a year and feel nowhere near re-joining civilisation. The road behind looks long. The road ahead looks long.
It’s probably a bit like when Ben Fogle and James Cracknell rowed across the Atlantic Ocean in 2006. For most of it, all they could see was ocean. Ocean behind, ocean ahead, days of rowing done, days to go. (They only had to endure seven weeks though!)
That perspective isn’t helpful.
I keep talking about taking one step at a time. But sometimes, I guess, there is a time to just stand still, stay put, and not take any steps at all, especially when you’ve been going around in circles for a while.
That’s when it can be tempting to allow oneself to be overwhelmed. In the stillness, the negative voices can be heard.
But I’ve been reminding myself quite a bit recently of the power we have as human beings to choose how we respond to things.
We’re not animals. We’re not ruled by stimulus and response. We have self-awareness, independent will, conscience, imagination.
For human beings, there is a gap between stimulus and response. A gap where we can choose what we do next, where we can challenge the thoughts going through our minds. We can argue with those negative voices in the stillness. We can decide.
Being negative, feeling sad, getting angry and frustrated, are not inevitable. They don’t have to be. We have a choice. We get to decide. In the vast majority of cases I really believe this is true (just to give a caveat for the small percentage who have genuine clinical conditions). And sometimes sadness and anger are appropriate choices.
In times like these, therefore – as I take a moment to glance around the room while I search my heart and mind – I’m going to be grateful. I decide to be grateful.
I’m grateful for the NHS, and specifically for all the hospital staff looking after me. I’m grateful for their skills, their intellect, their smiles, their hearts, their conversation. I’m grateful for this comfortable room, a clean and spacious hospital.
I’m grateful for all of you who read my blog and encourage me.
I’m grateful for all sorts of things that I won’t bore you with.
But it’s always struck me, being grateful needs someone to be grateful to. And so, perhaps, a day with no steps forward can also include prayer.
PS. I am grateful that cannulas exist and enable intravenous drug infusion. I am grateful! I am! Really! Honest, I am!….. but oueeeech!
Dear Son, Thank you for this update. I do appreciate that I can learn about the things that have gone on in your life since we were last in touch, and then when I actually get to have a video ‘chat’ with you, we can talk about lots of other family and life things that are happening, and you don’t have to go over the ‘boring’ details again (which to me are interesting, as I read them for the first time). Lots of love from me and Dad, as we hold you (and H, J, J, T and A) in our hearts and prayers. xxxxxx
Real tough, Andy. As ever, beautifully articulated. Hang in there.