Here’s what I learned from filming the dying
What would we do if we knew we had only a few months to live? Everyone has probably wondered at some time. The idea of exploring that idea through talking to ordinary people with terminal diagnoses for a documentary came to me in early 2016.
There had been a spate of newsworthy sudden deaths, such as David Bowie. Meanwhile, I myself had breast cancer, and a mastectomy in 2006. That experience had seen me stare into the abyss of death for a while, so I wanted to know how others had dealt with that feeling, but when there was obviously no turning back.
My documentary had to have a positive approach because I was looking for a template of how to behave if I received that sombre prognosis. I wanted to know about joy and peace. And if there were some answer to that great question: what really matters in life?
Setting out to find volunteers who knew they were living “on borrowed time” and were prepared to share the experience with a wider world, I talked to charities and hospices, and made appeals via social media and on radio.
Although I was looking specifically for people with an upbeat approach, there were many terminally ill people who had not made their peace with their shortness of life. It would be wrong to suggest that my interviewees are typical.
But in the end, I did find 12 remarkable men and women, aged from their twenties to sixties, who opened their innermost thoughts to me. As the documentary shows, none were in denial of what was to come — which is not to say they didn’t cry or feel sad at times.
I remember thinking how brave they were, but when I mentioned that word, I was always told, no. It wasn’t about bravery. Once the initial shock had gone, it was about getting on with things. What was the point of crying or being sad, I was told, if you don’t have long to go? It was a very practical response.
Some talked of loneliness — a feeling that they had to project manage their cancer so that it didn’t upset anyone else around them. Of having to hold back the tears or the really intimate conversations about death itself, because they feared it would be too upsetting for their family. Two of my interviewees were friends who met at a hospice and they talked of the relief it was to share frank conversations with someone going through the same experience.
I didn’t interview friends, family or doctors: this was a rare chance to garner information which could be useful to the scientific and academic community in years to come. To that end, extended interviews with people from the film will be available on the Open University website. We will also see if we can make the interview transcripts available to anyone studying palliative care and end of life, because everyone I spoke to wanted their thoughts to be useful to others who will face this same tough position. They wanted to offer a legacy of hope.
For that reason, I also don’t reveal at the end of the programme who has already passed away. I don’t want viewers to focus on what is inevitable, but the lessons shared.
And some of what I learnt was surprising. Very few had a bucket list, for example. Most wanted to hunker down with close family, but Annabel left her marriage and family, and went on a personal journey of discovery. Jolene was determined to enjoy normal twentysomething life including working for as long as possible.
Among the male interviewees some did seem to feel guilty about no longer being around to be the provider. Steve was devastated at bringing cancer into the home, as though he should have protected the family from such a thing. Perhaps the men found the loss of purpose difficult.
With the women, it was the subject of children which was often most painful. The idea that they would not experience motherhood, or would be leaving children behind, the job of parenting unfinished, was very poignant.
The toughest aspect for all was accepting that there would be those big events after they had passed away when their absence would be most obvious: the Christmas meal, the wedding party. The photographs they would not be in.
Yet the other common factor was a very positive one: over and over, I heard how that terminal diagnosis had been a changing point in their lives, and how they were glad for it. Losing the innocence of expected longevity helped them make the most of actual living. As Fiona said: “I realised I preferred a short life lived well, than a long life lived badly.”
In a wee, gentle way, while there was no right or wrong answer, they had discovered what really mattered to them. And that seemed to be: make the most of life while you have it.