After an excellent Spring when I started running, swimming and cycling, I started to relapse at the beginning of the summer in 2018. My four-weekly blood tests indicated that my neutrophils were falling, indicating the return of my leukaemia and the failure of my immune system. The decline was reasonably slow, so that it wasn't until November that my neutrophils fell to dangerously low levels and arrangements were made for me to return to hospital. It must have been around the 21st November, or perhaps a week earlier, that an increase in my temperature necessitated a visit to the hospital where I was given intravenous antibiotics. Arrangements were also made for me to become a patient in the hospital for what was called salvage chemotherapy, and I moved back into Yarty ward on Monday 26th November.
The next morning a PICC line was inserted, a tube that went into a vein below my left bicep through to my heart. Unfortunately the first two veins failed to admit the line, but the third vein proved successful, but I was left with massive bruising. I was still recovering from a viral cold that I had caught a couple of weeks earlier which had really knocked me out and which caused me considerable problems, and I was repeatedly, over the next fortnight, subjected to chest x-rays and tests of my copious sputum.
I also started the intense chemotherapy known as FLAG-IDA which was the only way in which I could avoid dying over the Xmas holiday. I knew it would be tougher than the Ara-C that I received two years ago, but I vastly underestimated how awful it would in fact be in comparison. During that first week I received large doses of chemicals (indicated by the acronym FLAG-IDA) which caused my body to inflate till I was puffy and bloated, and I felt how I imagine it feels when attacked with novichok. I felt absolutely terrible. My blood pressure plummeted, dangerously low, so that on one occasion when struggling to get to my toilet and back I collapsed and received heavy bruising to my left back. This happened on another occasion when I was so grey i was given oxygen to revive me.
After the week of massive doses of chemicals I expected I would fairly quickly recover, as I had done during the four cycles of chemotherapy I received in 2016, but this was very different. For two whole weeks I felt as though I was anaesthetised, able to talk a little, but in a zombie-like state, unable to do anything but lie in my bed and struggle to the toilet and back, trying desperately not to soil myself. Food lost its attraction, I was unable to even listen to music or use my telephone, I felt so awful. I had a repeated fantasy of being offered a red button, which if I pressed it would end all my suffering: I would just go to sleep and not wake up, and I felt very attracted to this idea. How did I survive? Mostly it was thanks to the support I received through this dark period. My best friend Michael came and was with me most mornings, then Brana was with me in the afternoons, and often they were both with me in the evenings. They saw me at my lowest. My friend Martin came to see me, as did Jeff. I had messages from my children, especially Leo, who flew down from London specially one Friday evening to support me.
It was at the end of the third week, just as I was hoping that my quality of life would begin to improve, that I was visited on the Saturday afternoon by a senior microbiologist from the laboratories who told me that my PICC line had disastrously become infected with staphylococcus haemolyticus. I admit that at the time, in the state that I was, this meant nothing to me. Indeed it is extremely dangerous and, in my case, life-threatening. It is highly resistant to most antibiotics. In consequence I underwent a week of very intensive treatment with appropriate antibiotics, lasting for many hours each morning and evening. In addition, the PICC line had to be removed from my heart and instead I had a cannula in various locations on my arms to receive these large quantities of chemicals. It was so serious that Brana, unbeknown to me, was involved in discussions with the matron to see if it was time to call my children to be with me and see me while it was still possible.
During the fourth week, the week before Xmas, every effort was made to prepare me to be able to go home so that the ward could be almost emptied of its thirteen patients. I was supposed to stay in hospital for another month as I slowly recovered. I was given very large transfusions of potassium, and also magnesium, and Lord knows what else, and it was explained to me by a Senior Registrar that I was effectively anorexic because of what I had gone through, and this was normal in such cases. In practice I had only lost a stone over the previous three weeks, but the illness had brought me low, so that I nearly became one of the 15% of patients who die whilst receiving this treatment.
On Sunday 23rd December I did return home, with my supplies of medication, and for the past four weeks I have been very slowly recovering. My brain is able to work again, so that I have begun to read books for the first time in two months. I can taste food and drink again as my taste buds recover. My medication consists of aciclovir to protect me from some viruses. and a daily antibiotic as the chemotherapy has left me vulnerable to pneumonia.
Was it worth it? I didn't die in December as would have happened otherwise. The treatment, drastic as it was, appears to have put me in remission so that all being well I can stay alive for a few more months. After four weeks I am beginning to feel human again. Yesterday I left the house alone and went for a short walk for the first time in two months. I have started reading again, and this is the first bit of writing I have done as opposed to the odd email.
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