“We must treat people not the individual diseases. I am living proof of what is possible” Lance Armstrong.
I’ve been reading a book called ‘Love, Medicine and Miracles’ – sounds a bit cheesy I know but it got me thinking about statistics, life expectancy and the role doctors play in a patient’s health.
I don’t mean to give Current Oncologist a hard time. While I can’t forget the fatalistic way she told me how long I have to live, handing a secondary cancer diagnosis to a 28-year-old must be an awful experience and possibly on that day she just didn’t handle the situation very well.
A different oncologist at the same hospital also diagnosed me with months to live rather than years. Maybe they’ll be proved right, but it seems a very demoralising thing to tell someone when they could be wrong. It’s an incredibly difficult balance to strike for a doctor. A patient must be fully aware of the seriousness of their illness but should that be spelt out by giving a time frame? I wonder if a doctor would bet their own life on their prediction being right?
Current Consultant couldn’t give me six months in that initial meeting –four and a half months down the line I’m responding to chemo and feeling and looking well. In ‘Love Medicine and Miracles’ Bernie Siegel says that, “The physician’s habitual prognosis of how much time a patient has left is a terrible mistake. It’s a self-fulfilling prophecy. People who are passive and who like their doctors often die right on schedule, as though to prove them right.”
The fact is, no one knows how long I have left or how the cancer I have will develop. I’ve never had this disease before so the doctors have to rely on statistics. If you are told you have a certain amount of time and accept that; stop making plans for the future and cease looking forward to tomorrow then what kind of message is that sending to your body?
Professor Hope told me that he has known people with the extent of cancer I have who survive for years on the chemo I’m on, then switch to another chemo for years, and then if I stop responding to either of those I can try a trial. That’s a very different scenario to the doctors at my current hospital.
A couple of weeks ago I saw a psychologist at a cancer support centre in Hammersmith called Maggie’s (more on this amazing place in a future blog). I told him I had started yoga and was meditating, almost apologising for what some might see as naive optimism. “I know it’s all pie in the sky stuff, but I feel it’s helping.”
He corrected me immediately, “It’s not pie in the sky. Studies have shown that yoga and meditation can help improve the quality of life for cancer patients.”
I warmed to him and his open-minded approach. He explained that of course there are exceptions to the rule – that to get to any statistic you need extremes of one end of the scale to the other; there was nothing to stop me from being at the ‘fuck you, cancer’ end of the scale.
I can’t explain how grateful I was for a professional to tell me that I have the right to feel optimistic about my outcome. He appreciated that I had enough intelligence to realise the severity of my situation – just because he told me I could outlive the statistical expectation didn’t mean I would take that as a foregone conclusion.
I told him how let down I’d felt by the negativity from my current hospital and he asked me if I thought I would benefit from a change of doctors. When I think about why I hadn’t done this when I initially sought a second opinion I realise it was because of fear, and to some extent laziness; getting to grips with new hospital staff, new surroundings, different days for appointments.
I’ve now decided to take that leap and change hospital. This week I signed up to Professor Hope’s NHS surgery. I don’t want to be another statistic and don’t intend on being treated like one.