Lindsey Bennister

“There is something very special about the sarcoma community and I feel privileged to be a part of it”

Lindsey Bennister, 49, Chief Executive, Sarcoma UK, London

“It is strange how situations change. I started working at Sarcoma UK six years ago, having worked at a prostate cancer charity. At the time, I had no personal connection with sarcoma, but that all changed two years ago, when my mother in law, Stella, was diagnosed at 85 years old.

“My history working for the charity has been filled with the most incredible, kind-hearted inspirational people, including a young woman called Katherine who had sarcoma but also wanted to volunteer for us. She was special, but also the first patient I came across who didn’t survive. I got this tattoo for her, and for other inspiring people I’ve met, the poppies are significant as they mark remembrance. Katherine got a beautiful rose tattoo just before she died. I had always wanted one, but had never worked up the courage. But then I thought about what other people were going through, the treatment and drugs, and it seemed so insignificant to be scared of a tattoo needle.

“I added to the tattoo when Stella died. Stella’s cancer journey was different to a lot of people’s, as the focus was on palliative care, which I think often gets overlooked in favour of treatment and trying to find a cure. It was clear that nothing could be done for her, she had already had breast cancer earlier in her life and major surgery was not an option. After lots of discussion, she took the decision that quality of life was much more important.

“She managed a year without any symptoms, and the tumour didn’t grow too much. Once a scan confirmed that the tumour had started to grow more quickly, things got harder. Is it easier to make a decision not to have treatment where there are no symptoms, and Stella found it harder to accept that nothing could be done. She was of a generation where doctors were fixers. But the palliative care team at the Royal Marsden Hospital and her local hospice were wonderful, they helped her to understand what was happening to her – and learn to accept it.

“Up until four days before Stella died, she was engaged and talkative, I even had a chat about poetry with her. If she had been struggling to cope with the side effects of treatment as well, this may not have been the case. I think it was palliative care that gave Stella that extra time to witness significant family events, such as my daughter getting her GCSE results. I know it isn’t an easy decision to make, as it is indoctrinated in us to kill disease and fight it, but this option can make the last years, weeks, days of life much more meaningful and enjoyable.

“This experience has changed the way I think about Sarcoma UK and the work we do. It has made me much more bullish when I am dealing with issues at policy level, and I now feel a legitimacy to fight the sarcoma corner – even if I don’t always draw on my personal connection. It has also given me the confidence and determination to keep making things better. There is something very special about the sarcoma community and I feel privileged to be a part of it.”