I should introduce myself before launching into a blog which I hope is not too depressing: living in the shadow of death. This is my starting point, as I was diagnosed with metastatic breast cancer (I lit up “like a Christmas tree” on the scans) in February 2007. It was not a complete surprise – I’d had primary breast cancer – not terribly high risk – in 2003. But disappointing that so much treatment hadn’t cured it.
Since then, I’ve had more treatment and have returned with my husband to Sydney after 17 years in London, Boston and Oxford (I first came to Britain as a Rhodes Scholar). I am slowly adjusting to the art of living one day at a time. Not my usual style to put it mildly. My prognosis is dismal, but I’ve come across sufficient, well documented ‘miracle’ cures (including Ian Gawler, a vet and friend in Australia who recovered from advanced sarcoma minus a leg, and who now runs courses for people with cancer) to convince me that recovery is possible. The question is, is it possible in me? I feel like a 19th century scientist trying mushrooms and vapours on myself, to see if anything gives. At the same time I know the literature better than I’d like to, in the circumstances, and don’t want to live in denial of the fact that 99.999% of people in my situation die fairly quickly. So I’m learning to live in an uncomfortable, ambivalent space of knowing-not-knowing which is fascinating, humbling and maddening.
In my previous life, having completed my houseman year, I helped to develop evidology (evidence-based medicine) from its early days in Oxford. With degrees in medicine, history and economics, I was interested in health policy reform. I returned from a stint in the US to work as a public health and policy lecturer at UCL; was one of the first Clinical Editors of the BMJ’s Clinical Evidence, and then, for the next 8 years, was chief executive of Bazian, a company I founded with Dr Vivek Muthu to provide high quality scientific evidence to health systems (mainly the NHS) and to publishers.
That life ended last year. So I’ve needed something else to do apart from read all the books I never had time for. On a recent trip to Sydney, the former editor of the BMJ, Richard Smith, encouraged me to write a blog documenting what it’s like to face life-threatening illness as a doctor who has been so involved with the EB world, among other things. Last year, I wrote one of the Opinion columns for the Health Services Journal, which I enjoyed, so I thought I’d follow Richard’s advice and give writing another go. Also, it’s probably the only thing I can do, come hell or high water (recently I was scribing away in the High Dependency Unit following brain surgery for a particularly accessible brain metastasis, although the writing kept veering off at a slant, which happily resolved the next day).
I hope to write about things that may interest doctors, other health workers and policy makers about what it’s like to have life threatening disease; to be on the other side of the doctor-patient divide, and to experience 21st century health care for a chronic disease (Sydney’s hospitals are pretty similar to Britain’s), from a quality-of-care perspective.
If you are moved to reply to this blog, please know that I appreciate feedback and am limited, given ongoing and unpredictable treatments, in being able to reply promptly, if at all. Please forgive me if I am not as reliable as I would like to be in correspondence.
I hope you enjoy the blog.