I know what it’s like to be desperate. I know what it’s like to sit in front of a doctor who can give you nothing more that a small possibility of, not even a cure, but just palliation. I remember picking over every word, every change in facial expression and vocal tone, trying looking for something, (anything) that would give me certainty or even just hope. Joshua’s medical team gave him so much: care, compassion, world-class research and medication but they couldn’t give us certainty. Even when we craved it so much.
My blood boiled recently when I saw an interview being advertised. The interviewee claimed that, “Chemotherapy is a waste of money and does not work 97% of the time. This is not debatable. This is fact.” It got right under my skin. Not least because a five-second Google search showed that this man (and actually I’m not even going to pay him the courtesy of sharing his name) was misquoting a 2004 piece of research that came to a very different conclusion.
But it did get me thinking about miracles and miracle cures and the persuasiveness of people who appear certain.
Cancer, contrary to what Hollywood tells us is no simple matter of clean living or genetic testing. It is about complexity and nuance and statistics. Success is touted as the probability of surviving for five-years post diagnosis. And that only tells a part of a story. It doesn’t tell you about the quality of life during those five years and it doesn’t tell you about the aggression of the cancer being fought.
Josh underwent chemotherapy and radioembolisation. He lived for 364 days post diagnosis. Is that failure? It didn’t feel like failure to us. Everyday felt like a miracle. Without chemo his surgeon estimated he would live for 60 days so 364 of them felt like a gold medal.
Make no mistake, I believe big pharma is in it for the money. But so, alas, are the folks making natural medicines, organic farmers, herbalists and especially those who are misquoting the research papers for their own ends. They are all trying to make a living. Maybe your local herbalist isn’t building a new office block in the centre of town but they are trying to make money. And wanting to earn a living isn’t inherently bad.
It is bad, though, to sell your products and services by preying on people who are desperate for a miracle.
When people told Josh he was looking well, that it was a miracle he would always say the same thing: “This isn’t a miracle. It’s science.”
You know what? We got our miracle – maybe not the miracle of a cure but the miracle of 300 “extra” days. The miracle that, despite the charming persuasiveness and certainty of the snake-oil purveyors there are still bright and compassionate medical teams and researchers who work long, thankless hours to help people like Josh. Josh might be gone but my admiration for his medical team has only increased.
Much love Penny!