A book review of Being Patient by Na’ama Carlin, Louise Chappell, and Siobhan O’Sullivan
I used to explain to my children that ‘a problem shared is a problem … doubled’.
I felt this offered them a different perspective and one that might engender self-sufficiency and resilience. I was confident this was the sort of thing that James Bond’s dad would have said.
I didn’t believe it, of course, and certainly not in all circumstances.
Nevertheless, there are some problems that people don’t share. One is – what it’s really like to live with cancer. This is a taboo subject, so it is important that a new book with a perfect title “Being Patient” penned by three impressive authors Na’ama Carlin, Louise Chappell, and Siobhan O’Sullivan, has just been published by UNSW Press.
In the introduction they explain that this isn’t a how-to book, but I think it is a very helpful book and will be invaluable to anyone who has a cancer diagnosis, or to anyone working in or connected to the health system, or in fact, to anyone who knows someone having health problems – i.e. to everyone.
Sharing problems doesn’t always double them, sometimes it helps us understand them and better address them.
The first thing to say about this book may be surprising. It’s a great read.
Yes, it’s a confronting topic. One of the authors, Siobhan O’Sullivan, died of ovarian cancer before the manuscript was written. There is no mistaking the gravity of topic, or the extraordinary bravery and resilience of these three women. But the writing, the tone, the content, are all magnetic – it is about what happens, what is good, and what could be better. I couldn’t put it down.
The strength of the authors comes across in the writing. Na’ama writes with youthful energy and a determination to improve the world. Louise with dignity and gravitas. Both are well regarded academics at UNSW, respected for the quality of what they do and the intensity and energy with which they do it.
The strength of the Australian health care system also comes across. The authors explain how they end up being diagnosed, they include false starts, and then ultimately finding their way, and being cared for by excellent health professionals.
But they also explain how things could be better. They include multiple and diverse perspectives from patients and carers they’ve encountered. There are a lot of bumps on the roads in Cancer World. I think patients, supporters, and health professionals will find much that resonates and a lot that is fresh and interesting.
One thing they say is that ‘magical thinking’ and trying to be the ideal patient who accepts everything gratefully and never questions or seeks second opinions doesn’t really work. They are also spot on in arguing that we have to move away from saying that people ‘lose their battles against cancer’ inadvertently implying that some do not fight hard enough – which is a nonsense. They emphasise the importance of listening to patients, and making care ‘patient-centric’. Many health workers are embracing this, and this book will confirm that sometimes it is working and things can get better.
Health, and particularly cancer, is not easy to manage. Cancer involves human cells changing (mutating) to sidestep normal growth restraints, so that they duplicate again and again forming a tumour. Each doubling provides a new opportunity to change, so cancers evolve, and groups of cells escape each new treatment provided. In short, no two cancers follow the same path, and one has to keep trying new treatments. This makes for a horrible, unforgiving marathon with regular awful surprises.
That said progress keeps being made. Surgery can work. So can drugs that are toxic to cells that are doubling, but less so other cells. But these poisons are provided at the highest possible levels in efforts to reduce the tumours – so there are always side effects with chemotherapy. Finally, there are new ‘immuno-therapies’. Here the body’s own immune system is harnessed to eat away at the tumour, as if it were a foreign invader, like an infectious disease. Which, of course, it isn’t. It is an enemy from within, a faction of cells that declares biological war on its host to the ultimate detriment of both!
Why does it happen? No reason. It is simply that if you are a multi-cellular organism, it is always possible that one of your cells might mutate and just keep dividing. Any of us could get cancer. Those who expose themselves to mutation causing agents, like cigarette smoke, are more vulnerable, but no one is safe because mutations occur by chance even in the absence of pollutants.
Reading this book opened my mind to new perspectives that I had almost forgotten, related to the Two Cultures of science and arts. Research into new cancer therapies is continuing and it should. But as we progress each new treatment becomes more and more expensive, both to develop and to access. Science costs more and more. But progress in the human aspects of cancer may be much more cost effective. This book reminded me that opportunities related to human aspects do not just relate to sympathetic words or trite platitudes, they concern improving health education and harnessing the wisdom of patients. Australia could do more of that and we could lead the world in cancer care – if we don’t already.
There are many arguments made for the importance of the humanities and social sciences. Some of which simply aren’t landing properly. But read this book and you’ll see the power of proper scholarship to transform thinking and approaches, to achieve change, that in terms of bang for buck, could be even more profound than the next multi-billion dollar cancer drug!
Professor Merlin Crossley is Deputy Vice-Chancellor (Academic Quality) at UNSW.
Disclosure: This book is published by UNSW Press and Merlin Crossley is chair of the UNSW Press Board.