We should, I thought, be compatriots: brothers-in-arms who'd lost their loved-one to an unfair, unlikely illness. What were chances that I'd come from South Africa to Italy only to stumble across someone who'd lost her husband to the same rare cancer my son succumbed to? I was even more astonished to discover we'd shared the same oncology team.
"I can't believe anyone trusts them. Those oncologists don't have a clue. They let him die," the woman said.
I bit my tongue. To say that I hold Joshua’s oncology team in high regard is an understatement: they treated adults, Josh was fifteen; doctor after doctor had turned Josh away, they took his case. Even when paediatric oncologists threatened to complain to the health professions council, this team shrugged and started chemotherapy.
My son and the widow’s husband shared a similar story. Both were diagnosed with an unbelievably rare cancer. Both had been in stage four. Both were offered palliative treatment. Both had confirmed that they understood what palliative meant. They both knew that the chances of survival were low. They'd both started with Gem/Cis chemotherapy within a day of approval. They'd both died before their time. The woman and I were both heartbroken.
But how could she and I have such different opinions on the medical team?
I didn't ask, so I will never know if the patient didn't tell his wife of his prognosis; if he'd shooed her out of the room when he signed up for palliative treatment. Perhaps she knew but didn't know.
What I did know was that, in her longing for a better prognosis, she'd overlooked the time she had left with her husband. She’d filled the time they had left with her normal too-busy-to-sit-down life-style. She expected success and by success she meant a long, cancer-free life. By not delivering it, the medical team had failed.
My experience was different. I still resent the initial doctors who refused treatment and estimated that Josh would live for a few more weeks. In retrospect, they did me a favour. I had no illusions about Joshua’s prognosis. The same team that the widow criticised had exceeded every estimate. They made it possible for Josh to repeat "I'm not dying today", for the next three hundred and sixty-three days. A full year of extra time. Success.
I don't know what your prognosis is. Every day, with new trials, new drugs and new legislation it improves. The day a definitive cure is announced, I will be thrilled. In the meantime, don't forget to about today.
During Josh's final year he faced many setbacks. He endured pain, countless trips to casualty, multiple transfusions. He also (to mangle Rudyard Kipling) filled every "unforgiving minute with sixty seconds' worth of distance run".
You are battling a terrible disease in a time when "normal" has been wrenched apart. Please don’t be that widow. Remember that, whether it’s a good day or a bad day, you still have today. Don't waste it.
Penny Castle used to run a successful executive coaching business with a focus on using positive psychology techniques to help employees be happier. She suspended her practise in 2018 when her son was diagnosed with stage 4 cholangiocarcinoma.
In January 2020, Penny re-opened her business and extended it to include providing support for individuals suffering with complicated and anticipatory grief (including anxiety). Her clientele spans the globe which allows her to work online. She spends her free time with her husband, surviving son and a fleet of out-of-control pets. You can find out more at: The Penny Castle