Wednesday, 1 March 2017

Combining the Personal and the Professional

The challenges of writing a non-fiction guide to breast cancer

by Dr Kathleen Thompson

Words with Jam asked me to write about the challenges of writing a book involving my personal experiences. Let me explain – I am a doctor who was diagnosed with breast cancer a few years ago. I found negotiating and understanding the treatment surprisingly difficult, even as a doctor, and it made me realise how bewildering it could be for someone without a medical background, who was also in a state of shock following a devastating diagnosis.

So I decided to write a book to guide people through the breast cancer experience. I wanted to explain the tests they would undergo, and the different treatments; how they would feel and why. I also wanted to share my knowledge about medical research, to help people make meaningful treatment decisions. I wanted to explain what cancer was, why we get it, and how to avoid it.

But how should I write it? People are in a state of shock when dealing with a cancer diagnosis, whether it is affecting themselves or their loved ones. A dry text-book approach wouldn’t work. I knew that I couldn’t have picked up any such book to save my life whilst I was having treatment – and, scarily, such a book may save your life. It is critical that you are well-informed during your cancer journey - relying on professionals isn’t always enough.

So maybe I should just tell my own story? No - although other people’s suffering can hold a morbid fascination, generally, unless you are famous, your personal story is only really of interest to friends and relatives.

However, I could combine the two approaches, drip-feeding important information, within the gentle wrapping of my own story. Besides, my particular story had all the elements of a good novel – point of change, tension, multiple episodes of jeopardy, almost resolution … then further jeopardy. It would be light relief from the factual information.

It worked well. I wrote short sections of essential information, then some of my story, reinforcing theory with light relief. At the end of each chapter was a summary and ‘Further Information’ box. Bite-sized pieces were key for people dealing with cancer.

There were some interesting sequelae to this approach. Using only parts of my experience, to complement the factual information perhaps gave a biased view of my personal life, and some people assumed I was alone through my cancer treatment. This wasn’t true, I was surrounded by a loving family and good friends, but I limited mention of them, for many reasons.

There were some interesting challenges too. If I were really to help people and make them feel that I understood their problems, I had to write honestly, including when things went wrong. It was the pitfalls, which would help my readers the most – the reassurance that it was OK to challenge medical decisions for example, and how to do it.

However, unlike a novel, my characters were not figments of my imagination. They were real people, who were generally trying to do their best. We all make mistakes, and my care was not always perfect. But the relevant characters in my book were not necessarily bad or incompetent. So was it fair to label them, based on a freeze frame of their professional lives? I didn’t believe so.

Consequently, my first step was to change not just their names, but also their physical characteristics. The breast cancer world is small, I had to try my best to prevent people guessing who the players really were.

I also used a pen-name. A curious member of hospital staff may check my name, or simply remember me, then the confidentiality would be broken.

My main concern was for the reputation of some of the staff involved, but I also needed to protect myself from any backlash. So I consulted a publication lawyer. He explained that libel only applies if a statement is false. As I had kept notes at the time of my treatment, I was confident of the accuracy of my account. I was also concerned about my interpretations of anti-cancer literature. As an expert in medical research I was keen to give a critical appraisal of some alternative ‘anti-cancer therapies’ which seemed to have limited scientific basis. My lawyer helped me with wording to make clear that I was writing my opinion. Generally one cannot be sued for an opinion. These modifications allowed me to write honestly without fear of litigation.

People asked me what effect writing a book had on me emotionally? Was it hard to revisit the traumatic experience, or was writing about it cathartic? To be honest, no, and no. When I wrote my book I was over the original trauma of the diagnosis and my main focus was to help others. I had a strong feeling that my cancer had happened for a reason. With my medical background I was well-placed to advise others. In fact, strangely, in some ways, I’m not totally sorry it happened.

From Both Ends of the Stethoscope – Getting Through Breast cancer by a Doctor Who Knows by Dr Kathleen Thompson