David Jenkins

When David began noticing bruises and experiencing breathlessness, he took himself to see his GP. However, David’s symptoms were misdiagnosed at each visit, until a blood test for suspected liver problems revealed that David in fact had acute promyelocytic leukaemia (APL), a diagnosis that almost came too late. Still in remission 18 years later, David shares his Spot Leukaemia story.

I was 48 when I noticed big bruises appearing on my stomach. I also noted that my performance in the gym was declining sharply. I could get on the ergo and do 3,100 metres in 12 minutes, and then suddenly I couldn’t. My running, which usually was at a pace of nine or 10kph for half an hour, suddenly had me out of breath. I felt sick and nauseous and went to the doctor, who diagnosed an ulcer and gave me pills.
The bruises spread. I went back to the doctor, who diagnosed a poor reaction to the stomach pills and gave me a different brand. The bruises spread further. They were now the size of dinner plates and all over my body. I went to the doctor again for the third time that month, who now thought it might be a liver problem, and on 6th September 2002 sent me to have a blood test to check liver function. I went to Bedford’s North Wing and had the test at 8:30am. I then went back to the school I was teaching in.

Between lessons I had to sit down to recover my strength and people were remarking how grey I looked in my features. On that Friday, I drove home to be met by my daughter who said, “The doctor rang and wants you to phone her back.” So I did, and she said, “You have acute promyelocytic leukaemia. You are booked into Addenbrooke’s Hospital, Cambridge. Go there now. Don’t wait. Don’t drive. If you get there straight away, there is a glimmer of hope for you.”

I was 48. The father of a girl starting A-Levels and a girl starting GCSE. I still felt I was quite a young man; I enjoyed skiing, Ocean Racing and being a family man, and now I had a GLIMMER of hope. It turned out I was not supposed to drive because I could have died at any moment.

An hour or two later, I entered the hospital where a member of the haematology team explained to me what it was that I had and that I would need chemotherapy. The bruises and weakness were because my blood was filling up with something called promyelocytes. It is a type of blood cancer, a cancer of the immune system. If I refused treatment, I had at most a month or two left to live. So, I accepted.
The first chemo was awful. As the drugs were injected, I could feel them burning inside me. They had to go in really slowly and the lovely nurse who did it took over an hour to deliver the one injection. This was repeated every day for 10 days. At some point in that they put in a central line to make it easier for them. I grew to hate my line. After a few days, it became infected and they took it out and put a new one in. That was repeated four times. All my hair and my nails fell out. The chemo poisoned me so that my digestive tract was damaged, and I had to have morphine just to allow me to swallow. With my immune system destroyed by chemo, I got infections and, unable to fight them, I became really, really ill, my temperature soaring. I lay under a sheet soaked in cold water with fans blowing cold air on me to try and keep me cool whilst antibiotics were just run into me continuously.

However, eventually things got better, and my wife was allowed to take me out for a drive. We went to Grafham Water and watched the sailing and I cried because I was afraid that I would never sail again and that I was going to die. After that they gave me the second chemo and it was worse. Then the third, which was worse still, and after that it was Christmas and I was allowed home for a few days. Then there was the fourth chemo. I pleaded with my wife and the doctors not to do it; surely three was enough but apparently it needed to be done. The infections after that caused my body temperature to climb on one night to 48°C. The textbooks say you die at 46°C. I lay in bed alone, shivering, and in my lucid moments desperately afraid I was going to die without saying goodbye to my wife and kids, but somehow or other got through the night.

The next day they gave me a shot of GCSF to stimulate my immune system to recover and repeated that every day for three or four days. My temperature fell, I got better, and on 6th February 2003 was discharged.

For a few months I had to go back once a week for a check-up. A bruise was a sign of the disease coming back and I became depressed just watching and waiting for it all to start again. I would have little flashbacks and I think was suffering from what they call post-traumatic stress disorder. After several months and counselling I eventually got over that. Two or three years later my doctor told me not to come back for any more check-ups as I was now definitely cured. I cried again just with the sheer relief.

I wouldn’t say I was in remission. I would say I am completely cured! It has now been many years since a haematologist told me to go home and stop worrying and that I should consider myself cured.


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