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.
Excerpt from Chapter 13, pages 47 – 51
Birds of a feather
A bed by the window
That suits me fine!
Light seeps from the east
Before the paint’s dry
Flooding, wet into wet
And with every dawning
A gull comes battling across the sky
Blazing a trail
In the chill of morning:
The exhausting trip
(To the Corporation Tip?)
We both aim to survive
For just another day
But which will still be battling
When the other has flown away?
But for now, I’m so lucky
I’ve a wide screen view
Of my own ‘Nature Watch’
And the changing hues of a canvas renewed
(On ‘sky TV’!)
I’ve a bed by the window
And it means so much to me
All thought of sleep is abandoned. It doesn’t matter. Why waste time sleeping when your shelf-life is limited?
Pale streaks appear in the dark sky, slanting in from the east, and for the first time I watch dawn break over this alien place. The process gathers pace, shades of grey giving way to ice green and grey tinged with pink, until suddenly it’s full-blown morning and there’s live action as a lone gull enters left, tipped one way and another by the wind. Determination keeps it on track. Symbolic. I have the same resolve and intend to win my battle.
Gradually, the ward comes to life and begins the routine of drug trolleys, food trolleys, nurses’ flying spot checks and doctors’ rounds. But the only person who actually comes to talk to me is a clerical officer with a list of questions. It’s good to chat to her for a few minutes.
“Don’t fight it, Mitzi,” she advises, indicating the chemotherapy.
“Oh, I’m not. Don’t worry, I welcome it.” I wonder what it’s like for her, working in this place of death.
Morning monotony is broken when a bundle of letters, get-well cards and presents arrive. Soon I’m surrounded by flowers, some in elaborate arrangements. Pretty soon my corner looks like a florist’s shop. They are very beautiful, but I wish people would not spend so much money on me.
Later in the morning, a new patient is installed in the neighbouring bed and I smile briefly as I walk past on my way to the loo. My bum is getting very sore from diarrhoea and the internal pain at the tumour site is worsening, but there is no privacy for washing and I have to clean my bottom using toilet paper wetted with flushing water. Back on the ward, relatives sit ominously by the opposite bed. It’s depressing. Too close to home.
Despite a reluctance to hear about my neighbour’s illness, I can see she is anxious so I befriend her. Her name is Vera, she’s in her seventies and worried in case her relatives won’t visit because they would have to change buses three times. She hasn’t any children and is pleased to share my family snaps.
She came in as an ‘urgent admission’, and hasn’t brought any money, so I brighten her bedside with flowers and buy her a newspaper when the trolley arrives. This minor kindness prompts her to share a confidence: she has not had her bowels open for three weeks! Does she mean three days? My stomach lurches. Too much information! I’m wondering how to steer the conversation onto pleasanter matters when a nurse arrives to give her an enema.
They can’t expect me to stay here while she performs! Stuff this communal living!
I grab lamppost and book and escape. The patients’ sitting room is empty, and I’ve just settled down for a quiet read when two young men walk in, complete with lampposts, and turn on the TV. Both are bald. So young! Which cancer…what chance? Just as I realise I’ve read the same sentence three times, the foul stench of faeces hits my nostrils. I wonder if the air conditioning is bringing the smell from the toilets, or if one of the men has an overflowing colostomy bag. I can’t offend them by walking out when they’ve just arrived, so pretend to blow my nose and surreptitiously breathe through a hankie.
“And now,” announces the TV presenter, breaking through attempts to lose myself in the book, “it’s time for ‘Living With Dying’.” A concerted groan goes up. One of the men switches channels, muttering, “Yes, we could really do with that.”
It’s an opportunity to leave. Outside in the corridor I fill my lungs and wonder where to go. Not back to the ward. Maybe I can find that glazed bridge I passed through with a nurse. Convinced I won’t be missed for a while longer, I turn the corner and go exploring.
How good it feels to look down on greenery, flowers and birds. Pity there’s nowhere to sit. I stand soaking up the real world as long as I can until nausea and weakness drive me back to the ward.
Vera’s curtains are open. Her toileting has ceased. I smile briefly, but lie facing the window, breathing in the cold, fresh air to prevent having to listen to a description of the enema’s effectiveness. Or otherwise.
At mealtimes, she has great difficulty feeding herself and constantly drops cutlery. The nurses are busy, so I retrieve things for her, but bending down increases my nausea. It’s worse still when I try to eat. Hospital food tastes revolting. The nurse seems concerned that I’m not eating and I’m getting a little worried myself now.
“I came into hospital determined to fight cancer, but how can I fight, if I can’t eat?” I ask in exasperation.
“Staff eat the same food as patients,” she smiles, patiently.
How can they eat it? I need real, fresh food, not this reconstituted chemical catering concoction. She suggests I try some custard and the thought excites my taste buds – until the first spoonful. It’s custard…but not as you know it. I don’t think of blaming the chemotherapy.
The books I brought with me lie heaped upon the chair, unread. I write a few lines to friends and family, but can’t concentrate. The ward fills with noisy visitors again. Feeling quite sick, I put my head under the covers to try to doze, but it’s impossible. I try wandering up and down the corridor, but feel weak and ill and have to return to lie down.
Tea- time again. Relief as visitors thin out. No white bread again. I don’t care. I’m so light-headed, I feel drugged. Oh, yes. I forgot. I am drugged. Ha! Ha! Drugged and dying. Or not. As the case may be. And time hanging. Such precious time, being frittered away in this dreadful place.
Nothing to do, but plenty of time to think – and it all crowds in on me.
Facing the Faceless
So will the emptiness envelop me
And with its cold embrace
Chase away the light?
Despair and loneliness encompass me
And, as I leave this race
Blot you from my sight?
I make the silent plea, “No tears for me”
And in this loveless place
I give up the fight?
Or will your hand be there, to comfort me
And give me strength to face
One last battle-site?
I’m alone in a cancer hospital, surrounded by dying patients in every ward, every floor, every wing of the building. More are admitted every day. The enormity of my situation hits me. It’s overwhelming. I’m facing death but no-one’s talking about it. If I die, will someone hold my hand, at last? Will I feel the solace of human touch?