My brother Mark was 50 when he was diagnosed with acute myeloid leukaemia (AML). It was such a surprise as he was 6ft 3 and had always been a very fit man. He had a really physical job, working as a plumber at Wandsworth prison, and used the gym there regularly. In 1993 he even coached Gary Taylor, the world’s strongest man.
Julie
In June 2009, Mark had to have a knee operation which went as planned. In May 2010, him, his wife Kay and two friends went on safari in Kenya to celebrate his 50th birthday. In the months following, he hadn’t been feeling 100% himself but he put it down to not being back to full fitness following the knee op. He never dreamt there was anything seriously wrong. None of us did.
Then one Wednesday evening in August, he came home from work as usual. His daughter and I were going out for the evening so Mark and Kay decided to get a takeaway. He’d been lying on the settee when he got up to get the telephone and order their food. All of a sudden he collapsed. Kay couldn’t bring him round or get him up off the floor, and he was so out of it he wet himself. Luckily he had the phone in his hand and so Kay dialled 999 straight away. The first response team came very quickly and Mark started to come round. He kept saying he was fine but they disagreed and told him that an ambulance was on the way. He was quite reluctant to go into hospital. They said to him that a big fit man doesn’t just faint so there had to be a reason. They managed to convince him to go and he was taken to St George's Hospital in Tooting for a few tests and they seemed sure he’d be home by the evening.
Then one Wednesday evening in August, he came home from work as usual. His daughter and I were going out for the evening so Mark and Kay decided to get a takeaway. He’d been lying on the settee when he got up to get the telephone and order their food. All of a sudden he collapsed. Kay couldn’t bring him round or get him up off the floor, and he was so out of it he wet himself. Luckily he had the phone in his hand and so Kay dialled 999 straight away. The first response team came very quickly and Mark started to come round. He kept saying he was fine but they disagreed and told him that an ambulance was on the way. He was quite reluctant to go into hospital. They said to him that a big fit man doesn’t just faint so there had to be a reason. They managed to convince him to go and he was taken to St George's Hospital in Tooting for a few tests and they seemed sure he’d be home by the evening.
"He urgently needed to find a donor. I was his only sibling but unfortunately I wasn’t a match. But the Anthony Nolan website found one quickly and the transplant was planned for January"
En route, one of the paramedics asked if Mark had been abroad recently and he told him about the trip to Kenya. They immediately started checking for anything he may have picked up whilst there. They ran tests overnight and in the morning we got the bombshell none of us were expecting - he had AML. They said he would need a bone marrow transplant as, by this time he had it a few months and it was very advanced. From that day on he never properly came home. He urgently needed to find a donor. I was his only sibling but unfortunately I wasn’t a match. But the Anthony Nolan website found one quickly and the transplant was planned for January. He had six strong rounds of chemotherapy to get him in remission. He was allowed home for Christmas Day and Boxing Day and then returned to hospital.
He had his transplant the second week of January 2011. It went well but he suffered awfully as it made him very poorly. Despite this, he never complained. The doctors were very happy that his body wasn’t rejecting the new stem cells and he was discharged on a Tuesday in the first week of March. He had two outpatient appointments in the following days, both of which he attended and was told he was progressing as hoped.
Then on the Friday I called after work to speak to him and my sister-in-law said that she had just got home from work and that he wasn’t very well. He couldn’t get warm even though he had the heating on, was wearing pyjamas, a dressing gown and had a quilt over him. He went to bed to see if he could get a bit more comfortable. I called back the next morning but overnight he’d been quite poorly and was going to the toilet a lot. So Kay called the ward at St George’s and they said they sent an ambulance. He was admitted to a different ward as the one he’d been on before had shut down temporality due to a bug in the sinks. He was put on a drip as they suspected he had a urine infection. He had a temperature but he seemed to perk up and by Saturday afternoon he seemed more his old self. I was due to go and visit the following day.
I got to the ward at 1pm. Our cousins had come to see Mark too but they told me they weren’t allowed into the room as he wasn’t very well. I’d spoken to him that morning and asked if he wanted me to bring anything in to eat or drink and he sounded fine. So I knocked on the door and the consultant came out. When I told her I was his sister, she agreed to let me in. He looked dreadful. He was very disorientated, very distressed, was sweating and didn’t really know what was going on. She told me they weren’t sure what was happening and that they were struggling to stabilise him. They told me to call his wife and two children and tell them to come immediately.
Julie's daughter stood next to the large photo of Mark at their home
He kept saying he was in pain and needed to go to the toilet but he had a cathater in. He was desperately trying to get out of the bed and was crying. More and more people were coming to try and help. It was absolutely awful.
They then put him on oxygen and moved him to the high dependency unit. Kay arrived with the children and they moved us into a family room. This was at 4pm. A couple of hours later someone came out and said he is very unwell and that the next 24 hours were critical. His organs were failing and he’d been put on dialysis and into an induced coma. At 8pm the four of us were allowed in to see him but as we walked into the room, he started to have a cardiac arrest. They immediately pushed us back out the door. They did manage to get him back around but then at 10pm, completely out the blue, the doctor came and told us Mark had died.
It was beyond distressing for all of us, especially as he’d become so severely ill so suddenly. And to make matters worse, no one could understand what had happened as his transplant was working. Two days later, Kay and the kids were called in to see the consultant who said he didn’t think Mark’s death was related to the transplant. So Kay gave them permission for an in depth post-mortom to try and establish what on earth had happened
They then put him on oxygen and moved him to the high dependency unit. Kay arrived with the children and they moved us into a family room. This was at 4pm. A couple of hours later someone came out and said he is very unwell and that the next 24 hours were critical. His organs were failing and he’d been put on dialysis and into an induced coma. At 8pm the four of us were allowed in to see him but as we walked into the room, he started to have a cardiac arrest. They immediately pushed us back out the door. They did manage to get him back around but then at 10pm, completely out the blue, the doctor came and told us Mark had died.
It was beyond distressing for all of us, especially as he’d become so severely ill so suddenly. And to make matters worse, no one could understand what had happened as his transplant was working. Two days later, Kay and the kids were called in to see the consultant who said he didn’t think Mark’s death was related to the transplant. So Kay gave them permission for an in depth post-mortom to try and establish what on earth had happened
"My mum died of cancer in 1987 when I was just 16, and then my father died suddenly in 2001. Then in 2009 my 15-year marriage fell apart. At every stage Mark looked after me (and my daughter). So for him to become sick, it had a huge effect on me and his death has left such a big hole."
A few weeks later the results came back and we were told that had died from a bug called Toxoplasmosis. It wasn’t related to his travels or the bug that had been found on the ward in the weeks before he died. They said they thought Mark had contracted the condition many years ago, possibly from working in plumbing and sewage. Once he started having chemo and become neutropeanic with no immunity, the bug activated and took over, shutting down all his vital organs. It hadn’t been picked up in any blood test as it’s currently not tested for when patients are admitted. Had it been found when he was and treated, he may still be here today.
About six months after Mark’s death, the medical practise in Wandsworth where I work as a healthcare assistant were offering health checks for patients over 40 who didn’t have a chronic illness. One chap came in and told me his wife has made him make the appointment. He’d been telling her a story about a guy he used to work with who suddenly got leukaemia. He said it had knocked the whole work force for six. He then told me he worked at Wandsworth prison and I asked if he was talking about Mark Harris. He said yes and couldn’t believe it was my brother. He said he was there because of Mark, which was quite overwhelming. Mark was amazing. He was absolutely amazing. He was a very strong character anyway, very positive the whole way through. Sometimes he’d go in and the nurses would say he’d had a bad night. We’d go in and ask how he’d been and he’d say fine. He’d never show anything. He would never let us worry.
I remember it all as if it was yesterday. We were very close because it was just me and him. He was eleven years older than me and my parents had us both quite late in life after trying for children for many years. My mum died of cancer in 1987 when I was just 16, and then my father died suddenly in 2001. Then in 2009, the month after my brother had this knee operation, my 15-year marriage fell apart. At every stage Mark looked after me (and my daughter). So for him to become sick, it had a huge effect on me and his death has left such a big hole.
Since Mark’s death, I have signed up to the Anthony Nolan donor register. At the time, the age limit was 40 (it’s not 30) and so I raced to do it before my birthday. I just wanted to help and give something back. I encouraged family members and colleagues to sign up too. Together we’ve raised quite a lot of money for the Ruth Myles ward at St George’s as they were absolutely amazing when my brother was first admitted. I hope that from telling his story, others will be encouraged to join. If you are 17-30 you can sign up to Anthony Nolan here and if you’re 16-55 you can sign up to DKMS here.
If you are 17-30 you can sign up to Anthony Nolan here and if you’re 16-55 you can sign up to DKMS here.
Do you know someone who has been affected by acute leukaemia?
Would you like to share your story with us? If so, get in touch here.
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Do you know someone who has been affected by acute leukaemia?
Would you like to share your story with us? If so, get in touch here.
– Subscribe to our Bpositive bulletin –
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