Today marks 65 days since my husband Neil lost his battle with this challenging disease, a disease where every single case is different, making it very hard to fully diagnose and treat. It took us weeks to get our heads around it (never mind learn how to pronounce its full moniker, Myelodysplastic Syndrome, correctly — Neil spent the first couple of weeks referring to it as ‘Melody’s Plastic’).
Debbie's mum, Joan, & Neil
After months of debilitating fatigue and being unable to shake off a nasty covid-like virus (contracted in October 2019, months before covid was reported to have hit the UK), Neil was diagnosed in February 2020, a few weeks before lockdown one.
The diagnosis came as a body-blow to him, to both of us — after a short spell in hospital and a course of antibiotics he’d been feeling well again, and had thought the clinical haematology appointment was a post-discharge formality.
The worst thing he expected was a flea in his ear about leaving it so long before seeing the GP about his fatigue, persistent cough, putty-coloured pallor and unexplained weight loss. To be told he had a rare form of blood cancer came from nowhere, and hit us like a bag of wet cement.
So began a year of fortnightly blood tests, blood transfusions and further bouts of overwhelming fatigue. Neil’s consultant referred him to UCLH for a possible stem cell transplant immediately after diagnosis, but partly due to covid, the referral wasn’t picked up until the October. By then Neil had undergone two courses of azacytidine, which he’d tolerated well. Two 100%-match donors were identified just before Christmas last year, and his transplant was scheduled for early in the New Year. Then the first donor dropped out, possibly got cold feet about attending a hospital in the midst of a pandemic. The second donor stepped up, and the transplant was rescheduled for early March. Then UCLH checked his ferritin levels — after a year of iron-rich blood transfusions these were found to be stratospheric, so the SCT was put on the back burner in order for these levels to be brought under control. Sadly, this wasn’t a treatment routinely offered by our local NHS Trust due to funding issues. (If you’re having regular transfusions your iron levels should be monitored — Neil’s weren’t. If yours aren’t, talk to MDS UK).
In late February Neil went up to London for a ferriscan, a type of MRI designed to identify the amount of iron being stored in the major organs. After the scan — which left him feeling a bit sick and as if he’d been ‘pummelled’, he went to the main hospital for a blood test and platelet transfusion, but began to feel ill on the way home. A few days later he was admitted to our local hospital with suspected neutropenic sepsis. He came home after a fortnight, the transplant was rescheduled for April, and the iron chelation started in earnest. However, his MDS began to progress and his counts plummeted. He began to receive blood and platelet transfusions more frequently, meaning regular trips to and from London, often by public transport (during a pandemic!). He kept getting infections, spending up to five weeks at a time in hospital, fifty miles away from home, when, thanks to covid he could only have short visits from me once or twice a week. These hospital stays often left him depressed, due to lack of outside contact, sleep deprivation and the hospital food (which was, frankly, nothing short of disgraceful — paltry, cold, dry, of little nutritional value and often inedible).
To cut a very long story short, Neil’s transplant was postponed four times. He died five days before what should have been ‘day zero’. The gods had more in store for us — a few hours after Neil passed, in intensive care in UCLH, my mother died too — 82 years old, she’d been suffering from a bad chest infection and the news about Neil proved too much. She was over 300 miles away in the North-East. Weirdly, she, too, had been diagnosed a few years ago with low risk MDS, which was managed successfully with EPO injections that she administered herself every two weeks. It wasn’t a factor in her passing, but a cruel twist of fate that the same rare blood cancer affected two members of our small family. Maybe it’s not as rare as we think — all the more reason to raise awareness and campaign for further research.
Neil’s case has turned out to be complex, and there is to be a full inquest into the sequence of events before his passing, to take place in February 2022. However, before contracting what turned out to be a final, fatal bout of neutropenic sepsis, Neil began to respond really well to venetoclax and aza — his counts improved dramatically and he had more energy than he’d had for months.
Just a couple of weeks before he passed he actually began to feel like himself again — it is thought his sudden downturn may have been due to something else that hadn’t been picked up. There truly is hope to be had in the new therapies coming along the pipeline. If your local NHS Trust doesn’t appear proactive or cooperative when it comes to new drugs, treatments or clinical trials (ours wasn’t, at least not for MDS) get yourself referred to a centre of excellence or research hospital, and ask about shared care. MDS UK are there to support you, should you meet any resistance.
We asked for donations to MDS UK at Neil’s and my mum, Joan’s, funerals, which raised over £900 for this amazing charity. I cannot overstate how much a difference it made to us to have the support and friendship of the MDS UK community during Neil’s journey, I will be eternally grateful for it, and as a family we will continue to support their work. It may be too late for Neil, but we hope that the detailed examination of his case may throw some unforeseen light onto lesser-known elements of the disease, and how it progresses, or impacts other underlying or undiagnosed health conditions.
May we send our love and strength to every one of you touched by this disease, whether you’re the patient or a carer or a loved one of someone going through it. I resisted posting in the MDS groups about Neil’s passing, as I know how soul-destroying such stories can be to read. But every single case is different, and one person’s story isn’t going to be the same as another’s.
Neil thought he only had weeks left when he was diagnosed, but it was nearly two years from when he first became noticeably ill to when we lost him, and we had many good times in those two years. He met some incredible people on his journey, and developed new levels of patience, resilience and humility along the way. If he’d managed to stay infection-free for just a couple more weeks he would have had his transplant — the donor cells were there, ready, on ice — and he could have been living a normal life again by Christmas. The new drugs he’d started were working, they just took longer to kick in for Neil than he’d needed.
Don’t ever lose hope!