Debbie Hickman : Covid-19 Five years on

My Covid story is the sub-text to our MDS one, which began on February 10th 2020 when Neil, a 61-year-old lifelong non-smoker who’d taken nothing more than painkillers and antibiotics his whole life, was told he had a type of blood cancer.  Worse than the word cancer, which was devastating enough, the consultant used the term incurable.  He’d said the next six weeks would be an ‘adjustment period’ for Neil to come to terms with his diagnosis, while waiting for genetic test results to provide a more accurate prognosis.   

Neil spent that time in total shock, believing (wrongly) that he’d been given only a few months left to live, while I spent it frantically searching the internet for evidence to the contrary.  Luckily the MDS UK website had appeared early in the process, but there was a lot to get my head around.

Neil had little appetite for the science - in his mind the message had been clear, the outcome was non-negotiable and hopeless so why waste time reading about it?  (What the doctor didn’t make clear – which I find unacceptable, knowing what I know now – is that in many cases, with good supportive care, MDS can be managed for years.  Not only that, a stem cell transplant can be a cure.  With a complex disease like MDS nothing is ever certain.) 

For the first few weeks I’d drop him off for blood transfusions then go on to lectures at the university where I was a second year, mature student, glad of the distraction.  But things weren’t right there either; there were murmurings about temporary closures to stop the spread of what was now being called Covid-19.  I didn’t take much notice, having bigger fish to fry in the anxiety stakes.  If campus shut down for a bit then fine, I’d stay home and continue my quest to unearth every scrap of info on MDS.  

In mid-March, instead of a seminar to discuss ‘The Novel’, we were taken through an online teaching system called ‘blackboard’.  We were asked to wear masks on campus, which we did reluctantly and self-consciously.  Over the next week or so the café and chapel closed, study areas were taped off, boiler-suited cleaning staff appeared during the day.  Students living in halls returned home ‘just in case’. Lecturers wore plastic visors rather than masks so we could at least see their faces.  It was unsettling and weirdly dystopian, more unbelievable than some of the plots we were coming up with as creative writing students! 

One morning we were told the campus was closing from the end of that day, until further notice.  The next day I took our old golden retriever out, and a fellow dogwalker predicted it might be Christmas before we saw each other again.  I laughed and said surely it would only be a few weeks, and he shook his head – his wife was a nurse and he claimed inside knowledge, ‘it’ll be months love, mark my words’.  I’d not watched the news or read a paper for weeks and had barely registered what was going on in Spain, Italy, elsewhere in the world, being too busy trying to work out what had triggered Neil’s MDS so I could find the way to switch it off. (If only it were that simple, eh.)  That night Boris Johnson made his ‘you must stay at home’ speech and it dawned on me that my dog walking friend might be right. 

Two days later, Neil had his ‘six weeks on’ appointment by telephone, to discuss the genetic test results.  Despite everything going on in the world at that point, when the doctor said his IPSS-R score was’ Intermediate 2’ rather than ‘very high risk’ as they’d first feared, so he could easily have at least five years, and with the possibility of a stem cell transplant and other treatments coming down the pipeline, the outlook was positive.  Neil felt he’d had a death row reprieve.  The sun came back out, literally as well as figuratively, and he spent the rest of lockdown number one pottering about in the garden between transfusions, watching ‘Escape To The Country’ and allowing himself to imagine a future. 

I got my head around online lectures and tried to teach my mum (who lived 350 miles away) how to facetime while having conversations with the top of her head.  I’d drive along empty roads taking Neil to hospital appointments, proof on hand in case we were challenged about being out.  Banned from the hospital and with nowhere else to go, I whiled away hours in the car reading and listening to podcasts. 

What was much harder was not seeing our daughter, a teacher, stuck alone in her flat thirty miles away.  Even once we formed a ‘bubble’ and she was allowed to visit she rarely did, scared of bringing lurgies into the house.   

Where my memories of lockdown one are mostly gentle, of sunshine and slow, peaceful walks with our old dog, good-humoured queueing outside supermarkets, and working in my ‘writing shed’ in the garden (a lockdown DIY project, completed between transfusions when Neil was feeling OK), later lockdowns were much bleaker.  Neil was referred to London for pre-transplant tests in October 2020, at which point our local hospital ceased his supportive care (I would NOT accept that now, but knew no better back then!) 

From then on appointments meant travelling for hours on empty trains and walking through deserted London streets without even a coffee shop to rest in.  He picked up infection after infection (though oddly not covid) and spent weeks in hospital up there, with just me allowed visits once or twice a week - a six-hour round trip.  Neil’s transplant kept being cancelled and rescheduled, and my mother was stuck in the north-east, lonely and increasingly poorly herself, fretting about not being able to help. 

Five years on in 2025, life is very different.  Neil died in August 2021 from a catastrophic fungal infection contracted two weeks before he was finally to get his transplant.  Devastatingly, my mum followed him later the same day.  We lost Jasper the golden retriever the following May, at the ripe old age of 15 and a half, and later that year Claire moved back nearer to me. 

From having shrunk to just two our headcount has grown now to eight, as Claire’s now a foster mum to two teenagers and we’ve adopted four rescue dogs between us.  I finished my degree just before Neil and Mum died, and ten months later parked my writing projects to help manage MDS UK. It’s a funny old world, but at least all that research didn’t go to waste. 

Neither Neil nor my Mum died from Covid-19, but they were victims of it. Neil’s transplant would not have been postponed three times, his supportive care would have stayed local and he wouldn’t have been forced to make 12-hour round trips to London for blood tests and transfusions, picking up lethal infections along the way.  My mum would have visited and been less anxious and lonely.  They may both have still been here.  But I guess we’ll never really know.