chat
My diagnosis
“In 1989, I was 46 on Wimbledon final day and awoke after a long hard week having worked 18 hours one day. I was feeling tired and unwell which got much worse during the day. My wife called the doctor who came to check me and suspected pneumonia. I was given antibiotics and then instructed to call an ambulance, and I was admitted to Southampton General Hospital where I was later taken to the high dependency ward. My only memory of that night was gasping to a doctor, ‘I can’t fight anymore‘ with a reply of, ‘don’t worry we are fighting for you now.’
By the following Wednesday they knew that I had lobar pneumonia but, there was something else. Apparently, my white cell count was 0.2 after 4 weeks in hospital on constant antibiotics. I was allowed home on a massive dose of pills, and many tests followed including full body scans and bone marrow tests.
While off work I started reading my unopened collection of Reader’s Digest magazines, I had one article which was headlined ‘conquering cancer’. One section was on hairy cell leukaemia (HCL) and I fitted the description. It mentioned a treatment called interferon. A few weeks later I had an appointment with my consultant who informed me that I did indeed have HCL to which I replied, “so I will be on interferon”. He nearly fell off his chair. I produced the Reader’s Digest, and I handed it to him to look at. I spent years on interferon. My consultant was very experienced in treating leukaemia and it was his expertise that kept me alive.”
Treatment
“The treatment was daily injections of interferon initially at night, but I changed to doing the injections in the morning before taking the dog for a walk as I felt the chemo pump around my system. The injections were for 12 months before being monitored for 10 to 12 months and then repeating the treatment. I remember saying to my consultant that I wanted to go on holiday to the gold coast west Africa to which he replied, “you can go if you want but you will come back in a body bag”. Needless to say, I didn’t go and I was medically retired at the age of 47.
All the treatment went on until 1995 when a new treatment called cladribine came along. In those days, it was a week in hospital 24/7 on a drip then discharged with strict orders to stay away from everything and everybody and to take tonnes of pills.
The treatment worked until 2017 when I was thinking I was too old, and it won’t come back now but as they say if one cell survives it will come back. I was treated with cladribine again as an injection to my stomach region during a Monday to Friday visit to Southampton General Hospital.
It all went well over the weekend, but I awoke on Monday feeling awful with a raging temperature. My wife called my Macmillan nurse who immediately ordered an ambulance which was on our doorstep within 5 minutes. I was diagnosed with sepsis with no immune system, and so began the fight to save me with 40° temperature, hallucinations, violent shaking and rigors. I was not in good shape and was walking the fine line. I lost 9kg in the first week. 4 weeks later, I was discharged from Southampton General Hospital feeling pretty battered, but lucky to have had such a good team and hospital. I remember it was many months before I returned to full health.
I thought that the treatment would last another 10 to 12 years but a phone call in 2023 out the blue from my consultant said otherwise. He had seen the results of a recent blood test and was not happy, so requested another blood test and an appointment in 4 weeks. This confirmed that the HCL had indeed returned so he required a CT scan and then yet another bone marrow biopsy. The results showed 80% HCL in the bone marrow.
Chemo started on the Monday and was going well, but by the Wednesday I awoke with a 40° temperature. I was admitted with the dreaded sepsis and treated with antibiotics. It was then decided that I wouldn’t be having anymore cladribine, but a new chemotherapy drug called rituximab. It was given weekly on a drip lasting an 8-week cycle. Halfway through, I got the shakes, and they stopped the treatment. Once they got me over that, I completed the dose. On the way home I thought I got off light, however, the next morning I had a 40° temperature and again was admitted with sepsis by ambulance. The doctors were convinced that I had an infection somewhere, but they couldn’t locate the source. Fortunately for me the massive dose of antibiotics did the job and it seemed to clear up.
It was decided that I should have the next dose of the rituximab given on the ward so I could be closely monitored. It all went well, and I was okay the next day so they offered for me to go home and that they would arrange transport. Everything went well that night, but I was rough in the morning and developed the shakes again. After 2 hours of hoping it would stop, I was admitted to the acute oncology unit with more antibiotics and another 10-day stay. The consultant said he had never had a patient admitted 3 times in a month. Fortunately, again, the antibiotics had done their job and that was my last admission and my treatment finished at the end of October.”
Life beyond leukaemia
“At the end of chemo came the bone marrow biopsy to check on the results of my treatment and the appointment to discuss them. They were fantastic and my blood counts were, for the first in 30 years, all in normal range. Thank God for our research scientists and their incredible work discovering Rituximab. Rituximab works by removing a film that covers the immature cells in the bone marrow, if the film is left, they develop into unhealthy cells like HCL and by removing this film they develop into healthy cells. All quite mind blowing for things you cannot see.
I believe in staying positive and take each day as it comes with a relaxed yet positive attitude which has certainly helped me through the difficult times and hope my story will help others.”
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
Did you find this webpage helpful?
If the answer is yes, please consider leaving a donation, no matter how big or small, we are incredibly grateful for your support and contribution.