Sometimes, lying awake at night, I imagine what my mutant T cells are up to. In real life, normal ones are spherical and are generally depicted looking like meat balls or balls of wool, with a halo of fine filaments. It is not clear if they can move around the body of their own accord, but I imagine them as rampaging gangs, like the droogs in the film A Clockwork Orange, moving through my blood vessels looking for mischief. “Let’s cause a rash here, or an itch here, or a runny nose could be fun.” Many of the symptoms of lymphoma seem prosaic and trivial, given that it is a disease that kills you, and it is easy to imagine that they’re the invention of evil minds with not very much to do. However, there are times when the evil droogs have come up with more subtle and spiteful ways to mess up my life. Twice we have made long-term and expensive holiday plans, once to Scotland, once to Corfu, but have had to cancel at the last minute, to the enormous benefit of the travel insurance industry. We have learnt that it simply does not pay to plan too far ahead.
Breathlessness has been a more or less constant feature of my lymphoma. This is particularly problematic when I set out to climb stairs. I am largely oblivious to the sound of my breathing but Carolyn says that I sound like Darth Vadar and that she can tell where I am in the house from the sound of my breathing.
In the summer of 2018, an entirely new element was added to my experience; I started to go blind. One sunny afternoon, my right eye refused to point in the right direction, that is the same as the left eye, so that I got extensive double vision. After that, vision in my right eye gradually deteriorated, entailing several trips to an overcrowded and rather shambolic eye hospital. A young doctor in the haematology department, in a process that involved much waving of hands and counting of fingers, diagnosed that something was interfering with one of the muscles that move my right eye. One morning I woke up with no vision in my right eye at all. This led to urgent action in the form of an MRI scan of my head, a truly ghastly experience. This revealed extensive tumours in my nasal passages, including one pushing against my right eye. For the first time, my lymphoma had a location; previously it had been a nebulous cloud of T-cells wandering around my body. Treatment took me to the radiation clinic, an impressive facility staffed by friendly and informative people in smart white uniforms, several of them Australian. I had five short sessions of radiography, aimed at the middle of my head through a remarkable mask by which I was held firmly down, pinned to a slab. The gloss was taken off this fascinating experience after a few days when my tongue and the inside of my mouth became so sore that I had great difficulty eating. I learned later that this may have been due to ‘emergent rays’ that had passed through their target and come out the other side of my head. I would like to have been warned of this before the treatment began. This was the only time I felt the NHS system let me down.
Before the radiography, I spent a night in hospital. For some reason I slept very badly and was prescribed morphine. I thought this might be interesting, and tried to recall the words of the Rolling Stones song Sister Morphine, but it wasn’t; nor did it help me sleep. By next morning, Carolyn found me confused and slurred of speech as if I had had a stroke. She asked our consultant what was wrong with me and he replied “Well, he’s in hospital isn’t he?”
The next event in the blindness episode was to be told, during a routine annual visit to the eye hospital to check my glaucoma status, that I was developing cataracts. Whether this is due to lymphoma directly or is a side-effect of the steroids I’ve been taking is not clear. This news came as a terrible shock that totally upset my equilibrium; for a few days I felt that death must be imminent. To lose one’s sight so soon after staging an exhibition of pictures seemed the final cruelty. Those delinquent t-cells were starting to get serious.
