The experience of cancer, much like the experience of being a mother, involves large swaths of caretaking. Rendered, not received.
From the nurses holding my shoulder to the taxi driver who picks me up outside the clinic, the friend or family member who changes the dressing on the wounds, the person behind the counter as I buy a cup of coffee: whatever happens, whatever they say, it is my job to either conceal the truth or make them feel better about what they are looking at.
I'm not going to qualify this - it is neither defensible nor desirable, and I find the whole thing tedious. But it is demonstrably true that life is easier when I obfuscate and redirect. Other people are too sensitive, or confused, or ill-mannered, to deal with honest answers to the question "How are you today?"
I'm not allowed to say "Fine, if you like having your flesh scourged off by laser death rays."
It just isn't done.
Perhaps if my cancer were a recently acquired novelty I would feel differently; there is no way to test the hypothesis. But I've been doing this for twenty-nine years, during which I've been granted no slack or convalescence. Biopsies are routine, bad news is expected, and if I want to have any kind of life at all I just have to keep moving.
My cancer doesn't scare me, and it shouldn't scare you, but that does not mean that either of us have access to a shared vocabulary. You'll just have to take my word for it - there is no easy or elegant way to discuss these matters, and when you can't talk about something so central to your experience of everyday life, it distorts all social encounters.
When I left the clinic on the first day of photodynamic therapy I was under the impression that the procedure had been trivial, insignificant. Walking through Marylebone and chatting about lunch I couldn't quite believe, and then did not want to acknowledge, my body reacting. But within about twenty minutes it was inescapable - because the treatment worked. My nerves, muscles, and blood knew something bad had happened even if my brain resisted. My body was not happy as it proceeded to demolish both the cancer cells and my equanimity.
I still would not have characterised the sensation as pain. Oh no; it felt like my skin was trying to crawl off my body.
Later at home I was sitting on the couch having a reasonable conversation with Byron when the true reaction set in - what is it in biological terms, a massive drop of adrenaline? I just sort of drifted sideways on the couch with my eyes closed, still listening but not especially competent.
My son wandered through the room and objected, because I am not allowed to nap. The children say that unscheduled rest makes me cranky. He said "Wake up, baby ninja mama!"
He was right (and very amusing). It might not be fair that I am expected to appear strong, fine, and capable all the time, even immediately after creepy experimental cancer therapy. But that is irrelevant. I am in fact scrappy, tenacious, a fighter. I don't like sympathy or drippy emotions. If I require assistance I would prefer it delivered with scathing humour, thank you very much.
There is no practical alternative.