Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing.
Winner, Medical Journalists’ Association Open Book Award; essay prize, RC Nursing; ‘a landmark for the patient voice’ – Macmillan Cancer Support, Exchange.
‘This is a remarkable book…essential reading for all who deal with cancer patients – health professionals, politicians, health service developers, carers and, of course, patients themselves…will surely inspire change.’ Professor Karol Sikora, in his Foreword.
Excerpts from Chapter 11, p 39-43.
A friend drives me to the hospital, which is about forty-five miles away. She says the nurses there are hand-picked. That’s encouraging. My departure had felt unreal, the ‘goodbye’s kept brief, for the children’s sakes. “I’ll be back” – a quick hug, a forced smile, eyes straining trying to look as if I believed it. Wish I could think of something original to say. What if…? Will I ever see you again?
An hour or so later I’m waving my friend off at the hospital entrance, impatient to get started. The adventurer in me welcomes the chance to show what I’m made of; the wimp wants to turn and run. ‘Visceral’ partly describes the churning in my guts, but what words could adequately convey this mixture of fear, hope, helplessness and threatened independence? It’s much worse than the first day at school. I pull myself up tall and try to look confident, but my bulging bag signals ‘new intake’. Might as well have a notice stuck to my forehead proclaiming, ‘One of Them: Number 10,003.’…
A plastic hospital identification ‘bracelet’ is fitted, my temperature and blood pressure checked. A nurse escorts me to have a blood sample taken, but when we arrive at the haematology department she is called away. As I sit alone in the corridor, a man in a white coat appears, sits down next to me and asks why I’m in hospital. When I tell him, he grabs my hand and encases it in two warm, comforting paws. (‘I’m here. Everything’s going to be all right.’)
“It’s OK, I’m not nervous,” I smile. But the feeble remonstration lacks conviction. And I leave my hand there.
“That’s all right,” he replies, “I’m enjoying it!”
We both laugh and I wonder if this is all part of the service. It feels so good. Yes, I’m ‘Miss Independent’, I can cope, but this human contact is giving me extra strength. And I do so need a hand in mine.
“Just a little scratch”, they say as they take the blood sample, not that a needle piercing flesh bears any resemblance to a scratch. Then it’s back to the ward and down to the serious business of being a cancer patient. I am keen to comply with the rules. If I have to be a patient, I’ll be the best they’ve ever had. …
…A central passage runs the length of the ward which is partitioned into two sections, each containing 8 beds with individual TV sets. I’m pleased to find my bed is in a corner, next to a window. My small corner. I set about home-making, covering the locker with photos of my children, tapes and tape recorder, and the armchair next to it with books. They’ve told me I can get undressed and into bed, but I’m not ill so I change into nightclothes, sit on the top cover and began to take stock. …
…Pretty soon I’m attached to a ‘lamppost’ contraption with two bags of fluid suspended from it and a pump making rhythmical ‘chukka-chukka’ noises. Every now and again it goes a little crazy and chatters haphazardly out of sinc. Jazz! Great! Labels show I’m having a mixture of Fluorouracil (5FU) and Mitomycin C (MMC). There’s also a bag of saline ‘because your electrolytes are down’. What are they? I’m told to let the nurses know if anything becomes uncomfortable. How bad is their ‘uncomfortable’? What could go wrong? How quickly could they turn off the pump…?
The fluids flood into my body. Hurrah! They’re killing the cancer! It’s so good to know the fight has begun, although I’m nervous about what the drugs might do to me. Once I’m sure chemotherapy doesn’t hurt, it’s fascinating to listen to the pump chuntering away and I fall deeper into the role of ‘cancer patient’, putting my life into the hands of strangers with blind faith.
The lamppost has wheels, so I can be mobile. Great! Moving gingerly at first, in case I pull the cannula, I set off to investigate the toilets. They are just around the corner opposite the nurses’ station (poor nurses!), but still quite a distance if I have urgent need and I’ve had diarrhoea since being diagnosed. The open door reveals a row of basins facing a row of lavatories. No privacy for washing. How will I cope with diarrhoea? What if I’m sick simultaneously? How will I bear the sounds and smells when other people vomit? Tucked away behind the door, I notice a single chair.
Back on the bed, I’m feeling less confident. But what’s really gnawing away at me is growing despair at the thought of distressing my children. I need to get away from all these sick people, but nurses say a doctor is expected on the ward shortly.
It’s not the oncologist, but a young doctor with a thoughtful face and a sincere smile. He asks his questions, listens with his stethoscope, does his doctor thing – but he does not ask to examine my bum!
“I expect you are fed up with people looking at your bottom,” he says gently – and I want to hug him! How considerate! But I just give a little nod. It’s still hard to talk. He’s given me back a little dignity. I didn’t catch his name, but I will never forget his face.
Shortly afterwards, a nurse escorts me downstairs for radiotherapy planning. Why don’t they tell me where to go and let me find my own way? Do some patients try to escape? As I sit down, my ‘guard’s’ bleep sounds and, apologising profusely, she hurries away, and it’s only then that I realise how comforting it had been to have someone with me. What a contrary creature I am.
So I’m sitting here, alone, in yet another corridor, shivering with cold (why is it so cold?) and fear of the unknown, wondering where everyone has gone. The oncologist pops his head around a door and spots me. I try to look serenely confident and hope he won’t notice the shivering. Is he coming to get me? No, he’s disappeared again. It’s the waiting that’s always so terrible, isn’t it A few minutes later a nurse appears and takes me into his room.
“How are you?” The soft voice oozes reassurance, the smile exudes supreme confidence.
The hospital environment is intimidating enough, but being in the presence of One-Who-Can-Save-My-Life is awesome and it’s too difficult to hold contact with those penetrating eyes.
Time to get undressed and lie half naked again as I’m measured and my skin marked for radiotherapy planning. Going topless on the beach will be easy after this. I try to concentrate on a mark on the wall and count to ten while lying under a huge machine called a simulator as radiotherapy staff plan precise individual treatment. It’s scary but there’s no radiation this time. According to my GP, the oncologist is one of the best in the country. I’m so lucky. It’s so important for me to have confidence in him. You are going to save my life. I know you will do your best for me. But if things don’t work out, you mustn’t feel any guilt.
Never before have I felt so completely dependent on one person. Never before have I felt so alone.
What made you feel like a prisoner?
I had to stay there, because my life depended on it. Contributing factors were: limited and conflicting information and the sense of being controlled.
Why could you only glance at patients furthest from you?
It was hard enough to deal with my own and my immediate neighbours’ illnesses.
You wanted independence, yet missed the nurse’s presence?
So sometimes there is no right or wrong way of doing something?
That’s right. I suppose I was fighting against becoming dependent. It must be difficult to address people’s different needs.
What needed to change?
There should be sufficient single rooms so that patients do not have to deal with other people’s suffering as well as their own.