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One normal day I was travelling home from my office on the underground. As I stepped off a train, my legs suddenly buckled under me and I couldn’t keep walking. I became very breathless, and my smart watch showed a fast pulse. I also felt my brain become fuzzy, like cotton wool.
I was taken to hospital via ambulance, having had a sudden onset of these symptoms and waiting on the tube platform for over an hour. I was diagnosed with pneumonia, sent home with antibiotic tablets and told to come back to A&E if I didn’t quickly feel better.
Two days later, I was lying in a hospital bed in a different hospital as an inpatient when I received a telephone call from a doctor at the first hospital who told me I almost certainly had chronic lymphocytic leukaemia (CLL). I had no support at this time.
Unfortunately, for two weeks the local NHS haematologist wouldn’t see me, even though my other doctors were concerned my pneumonia wasn’t getting better like it should be. I had to go to a private doctor to get the diagnosis confirmed, even though by then I was attending the NHS hospital every day for IV antibiotics.
A couple of days after I finally had my diagnosis confirmed, my care was transferred to a specialist hospital as I was very unwell, with a very high temperature and the beginnings of sepsis. The doctors treated me with a more aggressive antibiotic because they knew my immune system wasn’t working properly and my pneumonia began to resolve.
For the first nine months my illness was relatively stable, but since February it has sped up significantly. The number of cancer cells in my blood is now doubling every three months. My doctors are planning to start chemotherapy or similar treatment in the next few weeks, which prompts both the fear of side effects and the hope of improvement in my symptoms.
My experience of ‘Watch and Wait’ has not been smooth. My specialist says I have had a ‘stormy course’. I have had multiple infections, been admitted to hospital several times, and needed two operations to remove the cancer when it started growing in my throat (in my tonsils and lingual tonsils). I have been told the cancer will definitely grow back in the throat soon and then I will need more surgery.
I also experience severe fatigue and have had to stop working for now. I struggle to get through a normal day at home, having previously worked in a very active professional role.
Leukaemia has been like a tsunami doing its best to destroy my whole life. It has taken the skill and compassion of my friends, the NHS, and charity volunteers to help me and my family cope with it.
Just over a year ago, I was a healthy 46-year old with a successful professional career. I had worked for the NHS as a doctor and then the pharmaceutical industry where I helped to run the clinical trials that give us new medicines, and to communicate the results. Now I sometimes feel like a full-time patient, and my condition was until recently still officially classed as ‘early’. Coping with the massive changes CLL has brought to my life has not been easy.
Perhaps we should have been more suspicious that something was not right with my immunity when I had shingles several years before my diagnosis, and much younger than most people would be who experienced that. Many people with leukaemia do not die from the illness directly, but from an infection their body can’t fight off. Early diagnosis and careful monitoring could save lives.