I’m 67 years old and I was diagnosed with chronic myeloid leukaemia (CML) in September 2004. After enduring a few months of symptoms, including fatigue, tingling in the extremities, night sweats and a swollen stomach, I decided to visit my GP. He knew it was an enlarged spleen; he didn’t tell me until I got a phone call two days later.
I was then referred to the hospital under the ‘two-week wait’ scheme, where I was diagnosed with leukaemia. I knew it was cancer of the blood but I didn’t realise how many, if you like, varieties there were.
I was told that my chances were good and began treatment the same day I received my diagnosis. However, I suffered side effects. As a result, I changed drugs four times. Nilotinib was the first, then imatinib, then a trial on dasatinib, which was working well but it caused me to retain fluid mainly between my chest wall and lungs. So, I am now on bosutinib, which is again working well, but I believe that there are some side effects.
The dasatinib trial was recommended by my consultant due to no alternative treatment options being available at the time. I was glad I participated in the trial. As I said when it all started, whatever’s new, if my stuff isn’t working, just point it in my direction and go ahead with it.
However, my diagnosis meant I had to stop work as a sales manager of a company that provided products to the picture framing industry, and I had to drill down on most of my pensions.
Having had a triple coronary artery bypass grafting (CABG) in September 2000, then being diagnosed with CML in September 2004, followed by the initial treatment, I guessed that someone was trying to tell me something! As a consequence of my condition and the subsequent treatment (which I have to say did have its side effects of fatigue and quite severe skin rashes) I made a decision to stop working and take early retirement.
I was given support and information booklets from the hospital’s own services. I was also accessed a Clinical Nurse Specialist. That happened last year when I was in hospital. I was away on holiday in the UK. I had a very bad chest infection, came back home halfway through, got to the doctors, and they sent me to hospital. They then admitted me, but I was on a respiratory ward, so the doctors ignored me there because I was down as a haematology patient, and haematology weren’t aware that I was there. I had fallen through a gap somewhere, so off my own back I organised a specialist to come and see me, but I had to do that all on my own, as it were.
I now have regular check-ups every three months, and I’m very pleased to still be here alive and kicking, albeit gently.