Much of the diversity of cancer largely arises, of course, from genetics. We are all genetically unique and our cancers, caused by mutations, add to the uniqueness. A work colleague once did a study of the language used by cancer doctors to talk to patients; as well as the obvious ‘tumour’, ‘growth’, ‘lump’, etc., there was ‘naughty tissue’. I laughed at the time but actually it’s rather appropriate. In my case, the naughty, mutant tissue is T-cells, which are normally part of the body’s immune system, protecting it from infection by outside agents like bacteria and viruses. How mutant T-cells cause the symptoms that they do is a complete mystery to me and, judging from the apparent lack of any relevant literature on the internet, it may also be a mystery to the medical profession.
While I did not suffer the common side-effects of chemotherapy, such as nausea, I did react in a more extreme fashion. On four occasions in 2017, I awoke in the middle of the night unable to breathe and feeling as if I was drowning. This condition was a flash pulmonary oedema, in which the lungs fill with water, putting enormous strain on the heart. This really did feel like dying and, during more than one such episode, I bid Carolyn goodbye while lying on the kitchen floor. Fortunately, on all occasions an ambulance arrived almost immediately and I was rushed to A and E. There a hideous mask was clamped over my face so that oxygen could be forced into my lungs. The seriousness of my condition was brought home on one occasion by the arrival of a consultant in A and E waving a ‘do not resuscitate’ (DNR) form. Since the mask prevented me from hearing him, or speaking to him, this interaction was less than satisfactory. The first three oedema events occurred within 24 hours of receiving chemotherapy, strongly suggesting a causal link. The fourth, however, occurred several weeks after chemotherapy, leaving the exact cause of the oedema events uncertain. This event was probably the most serious; at one point Carolyn was ushered out of A & E into a side-room, presumably so that she would not witness my demise.
The DNR form is an oddity. I am familiar with consent forms, having signed several to begin different chemotherapy regimes and to take part in a clinical trial, recognising that procedures could result, in rare cases, in death, but the DNR form requires the signature only of a consultant. Resuscitation in life-threatening situations is an issue for cancer patients because, though they may initially respond to cardiopulmonary resuscitation (CPR), the chances of survival to discharge are minimal to nil.
The first of the pulmonary oedema episodes occurred while I was enrolled on a clinical trial, of a drug called Romicar (one can only wonder by what processes the names of chemotherapy drugs are dreamed up). I had to go through a process of assessment before starting this trial. This included a bone marrow assay in which a very thick needle was shoved manually into my hip bone. Carolyn, who witnessed this, says it was horrific , but I did not find it too unpleasant, probably because I could not see anything, but perhaps because the doctor who carried out the assay had gentle hands.
