She is very proud of the fact that she has volunteered. She lets me know this as we follow Amanda to the ‘quiet room’ where we will be able to talk undisturbed by the comings and goings on the open ward. Amanda lopes along ahead of us, setting an impossible pace, her mind perhaps on the operation she is to perform in a few moments time rather than on the speed at which her next patient is able to move.
I make the decision not to record the conversation this time, I will rather simply chat with this elderly lady who is about to return to the theatre after four years for a second operation to remove abnormal cells from her vulva. She is a living, breathing statistic, talking to me as I remember Tiff, the scientist working with VIN cell cultures who said, ‘a lot of the ladies, they get recurrent disease. They go back, I read that some ladies go back two or three times.’ This is not VIN…this is Lichen Sclerosis, but it has the same repercussions.
We talk about how cold it is and I worry about how she pulls her robe tighter around herself. She says, ‘I had to get up three times in the night just to walk around because I was so cold’. We talk about the weather in general, and about the merits of duvets over hospital blankets. ‘They tuck the sheets in so tightly at the bottom. I had to bring my pillows half way down the bed just to get the covers around my neck’. I am beginning to regret leaving my sweater in Amanda’s office but I simply nod, smile and follow her as she leads, and the temperature in the room seems to rise with the level of trust as she allows me to cross the threshold of her world.
She tells me about her family, her sons. ‘I never had a sister. I wanted girls, but now I have four granddaughters!’ We talk about the future for her grandchildren and her worry for them. She is calm, pragmatic. It is as if she is not really there in her robe; not really preparing for a surgical procedure, the extent of which she will have no idea of until she wakes up. She tells me about her husband who is coming to see her in the afternoon so that he doesn’t have to drive after dark. We talk about her son’s divorce, the plans he has made. The light in the room flickers and we laugh, nervously. She says, ‘That doesn’t bode well!’ We laugh again.
We talk about the project. She is polite. It seems as if it is a world too far away for her until I mention how we want to address the need for a patient-centred information. ‘The nurse gave me a booklet – it wasn’t very good. Some of it was about lichen sclerosis but some of it was all about vulval cancer! The nurse crossed out all the stuff about cancer but you could read it still! The nurse gave me a book about cancer too and she said ‘you haven’t got cancer but you might find this interesting!’