I was diagnosed with Lymphoma just before Christmas 2016; specifically, I have Angio-immunoblastic T-cell Lymphoma (AITL). A recent study described the prognosis for this disease as ‘dismal’ and concluded that there has been no improvement in survival for AITL patients over the last 20 years*. It was clear to me from the beginning that this diagnosis was probably a death sentence.
I intended the present narrative to be an account of my experience with lymphoma, but as I have been writing it became clear that was inappropriate, not least because my writing motivation and skills are undoubtedly declining as death approaches. There are important things I want to say, especially about those who have cared for me, that I do not want to leave too late. Also, a less linear approach avoids a phrase I do not like: ‘my cancer journey’.
My cancer experience has been strongly influenced by the fact that I live in Oxford, where the Churchill Hospital must surely be one of the best places in the world to be treated for lymphoma. In addition, I live only 15 minutes away from Oxford’s Accident & Emergency Department. My illness has been punctuated by repeat occurrences of acute pulmonary oedema, a life-threatening condition that has taken me very close to death more than once. I owe my life to the skill of Oxford’s paramedics and A & E staff. It is a sadness to me that these people enter your life, save it and then vanish anonymously into the night. Among all the clever people and wonderful machines that make up the NHS, its paramedics must surely be its crowning glory. My wife Carolyn and I are also blessed in having a pharmacy very close to us, where we are always met with courtesy, good humour and considerable expertise. Many is the time they have helped us out when we get muddled by the multiple drug regime that goes with being a cancer patient.
I should also point out that I am a biologist, not the kind that understands immunology or oncology (we rely on my daughters Jo and Alice for that) but one who believes that a knowledge of biology can help me understand what is happening to my body, and why it works the way it does. I am a committed evolutionary biologist; though not a blind adaptationist, I do find that natural selection explains most aspects of the natural world. More importantly, I understand the complex and unpredictable nature of biological systems and fully understand the difficulties faced by the medical profession who have to make sense of the reaction of highly variable patients suffering a very rare disease. At times it seems as though diagnosis and treatment are largely a matter of guesswork; they probably are.
I was diagnosed by my GP, also a good family friend, who had devoted a great deal of time to working out what was wrong with me. I was his last patient on the day that he retired. It cannot have been a pleasant way for him to end his career as a doctor. Nor can it have been a pleasant way to start Christmas. It certainly cast a cloud over my family’s Christmas, as my wife Carolyn and I told each of our three children, Sam, Jo and Alice, the bad news as, in turn, they came home for the holiday. The mood was lifted by Alice’s boyfriend Adam coming round to ask if he could marry her. He had a cold and I had lymphoma-related pneumonia so we discussed his plans and examined the ring he had bought while sipping Lemsip at the kitchen table.
My pneumonia was treated, over three days, in a walk-in unit, the Ambulatory Access Unit, where I spent three days being tested and filled with antibiotics, returning home each night.
While itching and swollen glands were the symptoms that caused me to consult my doctor, they were preceded by a curious disturbance in my sense of taste in which all kinds of meat tasted like cardboard. Thinking that Carolyn, an excellent cook, might be losing her touch, I kept very quiet about this. I continue to find, from time to time, that many kinds of food, such as meat, taste strange for a few days. A feature of lymphoma is that many of the symptoms are transitory, lasting only a few days at most. One day, for example, I suddenly found myself too weak to carve a chicken.
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* Xu, B. & Liu, P. (2014) No Survival Improvement for Patients with Angioimmunoblastic T-Cell Lymphoma over the Past Two Decades: A Population-Based Study of 1207 Cases. PLos One: 9(3); e92585.
