'They just don't know what to say or do'

A diagnosis of advanced breast cancer not only brings up extremely challenging and frightening emotions, but it can also feel like a particularly lonely journey as friends and loved one struggle to know how to respond. A new film, 'They just don't know what to say or do', created by the Shore-C (Sussex Health Outcomes Research & Education in Cancer) group at the University of Sussex, aims to help us learn how best to support someone with metastatic/advanced breast cancer.

Using real, lived experiences, and voiced by five different characters, we hear stories of responses from loved ones which were helpful, practical, and emotionally supportive as well as the statements that can be hurtful, damaging and even shaming. The film also contains a conversation between Dame Lesley Fallowfield, Professor of Psycho-oncology at SHORE-C, and Lesley Stephen, who lives with secondary breast cancer. 

Lesley explains how her diagnosis means that she experiences a rollercoaster of emotions. 'Sometimes when the treatment's going well, and the cancer is stable, you can almost forget that you're living with it. But you also have to live your life in three- or four-month chunks of time because you get regular scans to see how the cancer is doing. It can be very difficult just living with that constant uncertainty. I hate it when people, with the best will in the world, say "you'll be fine". This disease cannot be cured. It's almost like they're trying to be hopeful and positive for themselves, rather than for the patient, and they just can't deal with the diagnosis.'

As well as looking at what not to say – 'take it easy', 'you look well', 'have you tried changing your diet?' – were some impactful reactions that contributors had received. 'Big hugs from my husband', says one woman; 'my sister puts meals in my freezer', says another. And perhaps the most important thing of all, says Lesley, 'is just to listen'.

Our editor Jon Sutton has also interviewed Professor Dame Lesley Fallowfield for a future edition. She commented: 'I'm interested in feedback on the film. My GP surgery is giving it out, we're putting it in restaurants and places like that, because it's the general public we want to see it. And we've had people say, 'actually, the same thing has happened to me when my husband died', or 'when my child was diagnosed with…'. People either said completely the wrong thing, or they avoided contact or together, which was even worse. So it's not just about cancer.'

• Watch the film now, and see also our online piece based around 'They just don't know what to say or do'