Michael Kaynes: my story

Michael had been told that he just had a viral infection, but on 14th February 2023, he was diagnosed with acute myeloid leukaemia (AML). It was not the romantic Valentine’s Day that he’d been hoping for. 48-year-old Michael shares his story here…

“Just after Christmas, I started to feel unwell, nothing serious, just a flu-type illness and a cough. The GP said it was probably a viral infection which would pass within a few weeks. But a few weeks later, I noticed a little lump on the back right side of my head. It felt like a little boil or swollen gland. Typically, it was a weekend so I couldn’t contact my GP. I managed to speak to an out-of-hours online GP service and they suggested I contact my usual GP on Monday for a blood test.

On the Monday, I called my GP and was told that there was no need to panic, it was just a viral infection and would likely go away in around six weeks. I was told a blood test was not necessary. After around three weeks, the lump disappeared on its own. But a week later, a similar one flared up on the other side of my head. I called my GP who said there was no point in seeing me – I was still within the six week period he had suggested, so there was no need to worry about the lump. I wasn’t happy about this, so decided to once again contact the out-of-hours service.

In addition to the new lump on my head, in the previous few days I had also noticed that I was getting breathless going up stairs. The out-of-hours GP was concerned about this and because my own father had suffered a heart attack at the age of 49, he suggested I immediately go to A&E for an ECG exam. At this point, I was expecting a heart-related diagnosis.

It was 14th February 2023. I drove myself to Grimsby Hospital’s A&E department where I was given an ECG, various checks and blood tests. The heart-related tests all showed that I was fine, but I waited all day for the blood results to come back. By the evening, a doctor came to tell me that there was an anomaly in my blood – blast cells had shown up in the tests and it was likely that I had leukaemia. I was kept in overnight while they worked out what to do about me.  At that point, I was shocked, but really had no idea how serious this could be or what could be done to treat it.

The next day, I was told that I would be transferred to a specialist unit in Hull. I was told to bring my four kids to the hospital to say goodbye and explain what was going on. Then my wife drove me to Hull. There, I underwent a bone marrow biopsy to determine what type of leukaemia this was. I was told I could go home for a week to sort out a few bits and then I would need to return for my first round of chemo.

The consultant explained that there was no way I would have lasted if I’d waited for six weeks as my GP had originally suggested. This was the first time I realised I had something far more severe than I had thought. It was difficult to come to terms with the fact that, while I didn’t feel that ill, I was indeed extremely sick and might not be here today if I hadn’t gone to A&E.

I started my first round of chemo the following week. I was in hospital for around six or seven weeks. My wife came to visit me every day, but I didn’t see my kids at all during this time – it was too much of a risk. Luckily, my mum moved into our house to look after them. It was a tough time, but eventually I was sent home with antibiotics and antivirals. However, I was back and forth to hospital with various infections. My biopsy results showed the chemo had not worked as well as had been expected, so I was told they would hit me hard with the second round.

I spent around four weeks in hospital for my second round of chemo. After I was discharged, I got to spend about five days at home before I was readmitted with a high fever. They discovered I had sepsis, a picc line infection and E Coli, all at the same time. I also had an abscess – but I was too unwell for this to be treated properly, as it was not safe to operate on me at that time. I was in intensive care for a week and on two separate occasions, I was given just 24 hours to live. It was hard to believe that I was at death’s door when I was conscious and aware, but I was able to get my ducks in a row and have the conversations with my wife about funeral arrangements and that sort of thing. It was tough to know that I was potentially facing my last day on earth.

The team in intensive care had placed a Do Not Resuscitate Order in my notes. But my oncology team was quick to have this reversed. By this time, they knew that my leukaemia was in remission and despite how poorly I was, there was no way they were going to allow all the resources and effort that went into my care go to waste!  Fortunately, I recovered and was able to have surgery to remove my abscess before being discharged.

The hospital was great about giving us some sort of normality back home with the kids over June and July. My youngest two were finishing primary school and I was able to attend all the leavers’ events, school plays and sports day.  But I had known from day one that the best outcome for me would only really be possible if I underwent a bone marrow transplant. And in August, a suitable donor was found for me.

I had my bone marrow transplant at Leeds Hospital on 11th August. Initially, I had very few side effects, but I did end up with sepsis again, although thankfully this time, the doctors got it under control very quickly. After a few weeks, I started to get symptoms of GVHD in the form of a rash. I have been treated with steroids for this, but am currently waiting to undergo an ultraviolet light treatment (ECP) which will hopefully replace the need for these.

My medical teams at both hospitals have been brilliant – they’ve been open and honest about everything, including all the risks involved. I know that my bone marrow transplant carried huge risk – but it was really my only option to prolong a good remission.

I can honestly say that I have been optimistic through everything – although I know that this has all been very hard for my family.  When I was first diagnosed, one of the doctors warned me that this would be the hardest year of my life – and he wasn’t wrong!  But my medical team has thrown everything at me to get me well and for this I am hugely grateful…”

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