Stories from the day hospice: Post-its

Illustration by Maz Dear

Illustration by Marianne Dear

Throughout the summer of 2012, Chrissie Giles spent time at the day hospice at Princess Alice Hospice, Esher, running a creative writing group. In a series of posts accompanying our exhibition Death: A self-portrait, she reflects on her experiences there and showcases some of the writing produced by group members.

Frustration. Fall. Enough!

The single words written on Post-its told their own story.

Guncho spoke around her choice of word, talking about regrets, the decisions she rues, the eternal struggle to avoid rose-tinting the past. Yvonne regrets the drinking that caused her disease. Margaret was no-nonsense, saying she wouldn’t change anything.

Whatever we start with, it always comes back to the illness. With clarity as keen as a razor, Guncho sums it up: she knows that she isn’t accepting of her situation and she knows that she can’t be. How can anyone not in that situation understand? “Regrets are like the rain,” she says. “Although we need some rain it is always unwelcome when it comes.”

What smell would your chosen word be? What weather? What animal?

The smell of human faeces, rotting things, a hurricane, a caged animal, a fierce tiger.

One woman picks the meerkat from the insurance company adverts. She likens the recent ad where he has to jump through a flaming hoop on a motorbike to her attempts to keep her family happy.

Frustration comes up again and again – at the failings of bodies to ‘work’ and to have the energy to do what you want them to. The pressure of having to behave in a particular way for relatives. The lack of listening, respect and response from people working in healthcare.

John has a degenerative neurological condition and finds talking very difficult. He took the nurse in the room with him and pointed at various bits of equipment until she pieced the story together. He had had a fall in the week and now there were discussions about whether he should be in a wheelchair full-time.

Others responded to John’s story – we’re all on a decline, that’s where we’re all going, isn’t it? We’re all heading for the wheelchair bit eventually.

Someone comments on the better weather, yet sunny and hot isn’t always a good thing, bringing swollen legs, worsening agoraphobia and reminding people of holidays past.

Margaret tells me that she could have done anything with her life – gone to university, whatever, but all she ever wanted to do was have a family. She’s just met her newborn sixth great-grandchild but can’t hold her yet because of the chemo she’s been having.

“Should we warm up the same next time?” I ask as we wrap up. No need, the group replies. “There’s not enough time for that – we just want to get on with it!”

Chrissie Giles is a Senior Editor at the Wellcome Trust. Death: A self-portraitis open until 24 February 2013. Find out more about Princess Alice Hospice at www.pah.org.uk.

Listen to Chrissie read this piece:

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