“Terminal I am”

I meet B. on one of the nights I spent on the oncology ward at Singleton hospital in Swansea. I’m not sure if he realises who I am but it seems not to matter to him. It’s late and he can’t sleep so he wants to talk. I sit down on the bed as directed and he begins.

My head is heavy and I feel as if I’m carrying a lot. Many of the patients ask me how I cope with listening to their pain but its not so much the surprisingly, powerfully profound emotions that arise from the levels of honesty and trust that they offer me, that I carry as my burden, it is more the questions the work has raised. So many questions about how cancer patients are understood, cared for, listened to – or not, and the nature of the disease itself of course, the daunting reality of what I am seeing and experiencing, the resonances with my own family history. This is evidence from the ground up and my answer to those who ask me how I cope is that, actually, I don’t – not in any way at least that allows me to detach. I need to feel it all subjectively in order to express it and articulate it. Not ‘coping’ is how I make my work.

The form of autoethnography I use as a basis for my practice has to be an inclusive and open ended way of observing and expressing. The autoethnographical first person – the “I” – is  referenced by the ‘self’ and it is indeed my self that I try to give. Many people I talk to have  expressed misgiving as to whether what they have to say is of any worth. It always is of course but in the end it is not so much in the telling but in the meaningful exchanges between us, exchanges  that sometimes need no words at all, that I believe real value exists. I see my writing and making images about people from the first person perspective as a process of creative continuity where meaning becomes fluid and ‘persons’ are celebrated for the unique individuals they are.

B. tells me about his diagnosis, now three years ago, of myelofibrosis. ‘Terminal I am’ he says with a smile. He has diabetes too and he is constantly back and forth from hospital for blood transfusions. He is very ill but seems quite philosophical about his prognosis. His only worry is how his wife will cope when he’s gone. ‘ My son and me now’, he says almost conspiratorially, ‘we have got it all sorted out now. She’ll be alright now and I can just go’.

B. is physically shaking all over his body. He sits on the side of his bed because it is too uncomfortable to lie down. He says he gets so bored here at night as he can’t sleep and the hours drag on. He wants so much to talk so I simply nod and for two and a half hours he tells me so much about his life and about his love for his wife. He tells me about cruises they have both taken, about all the exotic places he has seen and indeed he transports the both of us away from the quiet and darkened ward towards sunshine and deserts and fjords and wide open skies.

At midnight a nurse brings him tea and toast with marmalade. ‘I need the sugar’, he tells me and winks. He seems so relaxed and happy despite the uncontrollable shaking. The nurse takes pity on me and returns with coffee and some crackers. She is unsure of who I am but she seems pleased for B. that he has someone to talk to.

B.’s hands are shaking so violently that he is in danger of spilling the hot tea. I move to help him but his expression tells me that I should not. He grips the handle of the cup with determination as his knuckles turn white and in the end he allows me to steady it just a little as he drinks. Spreading the marmalade on the toast is another Herculean task but he manages it and grins at me like a schoolboy.

Eventually he decides to try and sleep so I get up to take my leave. He asks me my name and I tell him who I am and what I am doing here on the ward. ‘Ah!’ he laughs, ‘I thought you were a vicar!’ As I turn to leave he calls me back and reaches for my hand. His grip is firm if shaky and he says, quietly ‘Its been a pleasure to talk to you. It broke up my night.‘ I said, ‘I’ll see you tomorrow.’



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