Coping with cancer recurrence in a hospital system under strain

I realise I’m lucky to have accessible healthcare, even if it isn’t perfect

I am beyond grateful to live in a country where I can access healthcare easily (in my admittedly highly privileged position) and I can feel confident that everyone I meet there will do their best for me. I postponed a recent trip to the UK as I was a bit freaked out by reports of the demise of the NHS, and the fact that my trusty European Health Insurance Card would hold no sway there. As it turned out, I did end up having to avail of a few overnights in my “own” hospital soon after that cancelled trip, and I was glad to be somewhere familiar and not panicking in an unknown emergency department in a foreign city.

I was diagnosed with metastatic bowel cancer in 2014 and have had four bouts of chemotherapy, various radiotherapies, bowel and liver resections, and a pile of other minor interventions. I have been extraordinarily lucky though, in that I had not required any anti-cancer treatment since 2018. I got through Covid times without the need to trouble the secondary care services and I was able to manage most of my ongoing side-effects with blasts of physio, counselling, yoga, and cava.

So I was a little taken aback in late May this year when it turned out that my cancer had decided to make a reappearance. Anyone who has ever had any degree of cancer knows that the thought of recurrence is always there, bubbling away for a lifetime. With a cancer that has already metastasised at diagnosis, you know that the microscopic mitotic blighters have already floated off to wherever they want to go and can re-remerge with gusto whenever they like. I had lived with this excruciating uncertainty for a long time, but actually in the past year or so I had managed to think of it more abstractly and it had stopped interfering with my day-to-day life.

Anyway, here I am now in the middle of ‘Chemo No. 5’ (not as much fun as the Mambo). My bone marrow has been complaining about this further assault on its integrity. My neutrophils all scuttled off, leaving me rather defenceless in the face of various potentially lethal microbes. I was admitted to hospital with “neutropenic sepsis”, which was a bit of an overkill on the sepsis front (besides an intermittent temperature, I had no other symptoms). Still, I saw the value of being in a safe place while my neutrophil count was close to zero.

Unfortunately though, I was well enough to notice some of the deficiencies in hospital care that I probably wouldn’t have noticed so much if I had been properly unwell. None of these experiences are unexpected, or revelatory, or negligent, or unusual.

Bed capacity is always a problem and I ended up in a ward which has been earmarked for renovation since I was an intern. It was a single room, which matters when you are immunosuppressed, but I had to share toilet facilities with a wide range of other patients. Not ideal, but again perfectly fine for a few days; except unfortunately the cleaning regime was not what you would call rigorous. I ended up bringing my own ‘Cliniwipes’ and gloves, muttering “bring back Matron”.

Another repeated error I have encountered over the years is the misuse of one of our most basic pieces of equipment, upon which we rely for solid objective evidence of a patient’s wellbeing. Taking a temperature should be a relatively straightforward measurement, but by my observations (and backed up by actual scientific papers), it turns out that it is only accurate 60-to-70 per cent of the time. For me, this meant the difference between being discharged home to my beloved family, or being whisked off to ICU. Ramming a thermometer probe into the concha cavum (I had to look that up) instead of the external auditory canal means a difference of up to half a degree, which makes a bit of mockery of using arbitrary cut-offs like 38° to denote a fever. A little bit of refresher training here wouldn’t go astray at all. And before the blood-culture-and-tazocin circus begins, maybe just check the temperature again yourself.

It is a boring old trope to complain about hospital food, but I made the mistake of saying I was vegetarian, which really threw the catering department into an awful spin. Cue “mixed bean casserole” for two meals a day and much confusion about whether I could eat yogurt or not (the ubiquitous horse-hoof-derived-jelly and ice-cream was administered with its usual gusto though, thankfully).

I was cared for with kindness and efficiency and I am very grateful for the comfort of having all these good people on my side. Sometimes infrastructure, training, and lack of lateral thinking can let that side down.