Half Life – 49 – trials and tribulations
October 8th, 2021
As a connoisseur of the skills needed to insert cannulas and take blood, it was a relief to discover that the capabilities of Big A, the nurse in charge of the drug trial, were right at the top of the tree. Having endured rough handed former abattoir workers pretending to be nurses dig around for a vein, the smooth elegance with which he inserted the needle was, almost, a pleasure. Cancer sufferers have arms like pincushions and, when blood seekers get it wrong, the bruises stay for days and the veins dive deep into the arm to hide. Big A’s size belies his gentleness and dexterity, and my veins offered themselves to him without complaint to allow the last blood tests for the trial to be taken. Finally, it was done. The boxes were ticked, the questions answered, and all the signatures scribbled and witnessed. The trial to see if an immunotherapy drug when combined with chemotherapy would help prostate cancer sufferers was getting me and all my data. Not a day too late. Pain has been ramping up to tear generating levels as the weeks of Nobby enjoying uninhibited growth have gone by. Schedules were discussed, planners started to be filled and, although looking forward to months of feeling sick is a curious concept, the news that we were to get started was the best we’d had for some time.
Then, the curse of Nobby struck and the lateral flow test lit up like a pregnancy test for triplets. Older Boy had Covid. We’d told him it was a cold as snotty sneezing was the only sign until the temperature emerged. Quickly bundled into his bedroom, washed head to toe with hand gel, and given strict instructions not to come out, the house went from calm to moderate panic. Potentially pushing the chemo out by weeks, with the extra days of pain to be fought through, it poured cold water on the success generated by getting on the trial. After a marathon phone session the NHS came to the rescue, The Wife secured PCR tests the same day for three of us, with Older Boy needing to wait for one in the post. Younger Boy, The Wife, and I all came back negative with the results emails arriving the same day. Our appeals to them to hurry due to the chemo had worked and the derailment of such carefully laid plans was narrowly avoided.
Older Boy’s loneliness at being locked in his room, plus our missing him around the house despite the endless teenage goofiness, was slightly reduced by having him join us at dinner via a screen propped on the table. His free pass on all electronics is not helping the boredom, as even binge watching his favourite Japanese cartoon series is starting to lose its appeal. Books will be picked up soon, they always are with him, but, so far, the level of brain numbness has not extended to accepting the generous parental offer to provide some schoolwork. By day six he will probably be begging for it. His stoicism is amazing as he realises he is not just protecting us all but, by keeping to the rules and his room, he is allowing the chemo the happen in a safe way.
Finally, back in the clinic, with more holes poked into the right arm, the first session of the drug being trialled followed by the chemo are slowly pumped in. Thursday is now marked down as the day each cycle will start over the next seven months. A long wait to get started, with more blood taking to satisfy the endless needs of the drug company, sent my needle nerves sky high, even with the gifted hands of the nurses. The idea of ‘getting used to it’ is utter bollocks; I hate the jabbing feeling every time. Although it is supposed to be unknown, some casual research, plus a chat with Brother J, who used to work in immunotherapy drug development, suggests that a rash is likely if I am on the real drug rather than the placebo. Inspections all over will take place, as no one has said just where the rash might turn up. It’s not often you hunt for a side-effect wanting it to be there. There is no guarantee one way or the other and it will not be known for certain until they unblind the trial in a couple of years, which is rather optimistic given overall survival rates for the people they are testing this on.
The adventure begins or, perhaps, begins again as this is chemo-fun episode two. Nobby is, at least, now under attack and I hope things become really horrible for him. If they do, it will all be worth it. The house is ready with plans in place to allow life to continue as normally as possible. Covid’s gift of masks, gel, and the ability to ask people to be infection aware means it’s easier to manage those times when my immune system is absent. The prize is not just emerging in May with Nobby kicked back by many months, but also the opportunity to finally be able to have that long awaited proper honeymoon The Wife and I have been dreaming about for years. Older Boy was on the holiday after the wedding and forced its re-classification as a holiday with a small, demanding, baby. Fantasies about cruising up the Norwegian Fjords in decadent luxury will be part of the sustaining dreams as I lie awake in the middle of the night.
good luck and lots o love to all xx
Focus on those Fjords and everything crossed for the trial xx