No. 10. Excerpts from pages 43 – 47, Chapter 12.
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.
Sixteen beds, but isolation
Heaving wards of shell-shocked faces
Overwhelmed by all the sadness
By the scale of desolation
By the role that staff must play
Chemotherapy lamppost pumping
In rude health, apart from cancer
Sit upon the bed, not in it
Just a vain and futile gesture
But it’s something I can do
I’m the one who’s going to beat it
I’m not ill. I’m not like you!
But they’re dying all around me
Did they think the same way, too?
And a wheelchair now appears
(Though I’m capable of walking)
Challenge, and permission’s granted
But the seed is deeply planted
Now confirmed: my deepest fears
It’s quite clear, what they’re expecting
It’s quite clear what is assumed
Shockingly, yet just routinely
Everybody thinks I’m doomed
…There won’t be any visitors for me. I’ve asked friends and family not to visit, to spare them long journeys, stilted bedside conversations, upsetting sights – and perhaps dreadful last memories.
…The radio no longer holds any attraction. I just want peace and quiet. Suddenly, a man appears at my bedside with – horror of horrors – a wheelchair!
“I’ve come to take you down to radiotherapy,” he says.
My stomach plummets. So I was right all along. They’re expecting me to deteriorate quickly – death is imminent.
“Do I have to use… that?”
He looks perplexed and seeks advice from a nurse.
“What’s the problem?”
“Do I have to go in… that?” I nod towards the tangible reminder of my impending disablement, fearful she will insist. “I can walk. There’s nothing wrong with my legs.” I’m gabbling now.
She seems surprised and says patients usually travel to radiotherapy by wheelchair, but yes, I can walk if I want to. Victory! For how long? We set off, blanket, shawl-like around my shoulders, lamppost whizzing along at arm’s length like a keen terrier. I find myself walking faster and faster, perhaps trying to show the world that wheelchairs aren’t for the likes of healthy me. When we pass the main entrance I see why it has been so cold. Maintenance work being carried out on the entrance doors allows a marauding wind to infiltrate the whole building, scooping remnants of warmth from the remotest corners. Somewhere in a maze of corridors, I’m passed onto radiotherapy staff. Corridors… catacombs… Now I understand why I need an escort. They leave me sitting with other patients. As a distraction from my frozen ankles, I examine the ‘Thank you’ cards decorating the wall. Survivors. Will someone sit here looking at my card one day?
…The radiotherapy staff are incredibly meticulous, yet remarkably patient and considerate. They deal with a constant stream of people, yet seem to show a genuine interest in me.
“Will it hurt?” I ask nervously. It’s a very big machine. They assure me I won’t feel a thing. But are they telling the truth?
They leave the room while treatment is delivered and I put my confidence in them. Together we will beat it! They tell me it will only take a few minutes. All I have to do is lie still, breathe normally – and, presumably, try not to be embarrassed at being naked from the waist down! Although they can watch me and talk to me through an intercom, I feel totally vulnerable: a car on an automated production line, in the hands of a gigantic robot.
…It’s a long day, but eventually lights are dimmed. But there’s no real peace. The poor lady in the opposite bed is very ill and has fits of coughing. Well, it’s not so much coughing as trying to cough. My chest tightens in sympathy. Her pathetic struggles break the silence repeatedly as I try to sleep. I want to keep strong to be able to fight cancer, but it’s too light, the bed is rock-hard and whenever I’m close to floating off the coughing starts again. Night closes in. Nurses patter to and fro. And I’m wide awake. Drat! Now I need the loo! All this drinking…
…Finally, aided by one of the sample sleeping pills, I drop off, only to be woken by squeaking and clattering as new oxygen cylinders are wheeled past. There is urgent whispering. Purposeful footsteps come and go. Everyone else seems to be asleep, but I lie here, sensing the crisis. Cough, cough, cough. My stomach knots up. I want to cough for her. Is that how I will end? I realise I’m lying in the foetal position, knees drawn up, thumbs tucked into clenched fists. But I don’t uncurl.
In retrospect, was your decision to have no visitors the right one?
I think it was right for my family and friends.
How did lack of privacy in the radiotherapy room make you feel?
What needed to change?
Contact with a team would have provided improved opportunities for accessing information and support.
Explanations to patients convey respect, so can help them feel more in control and improve patient/professional relationships.15
Use of changing cubicles (or screens) and gowns (for example, specially designed gowns such as the ‘Plymouth Gown’ for radiotherapy to the breast) would help preserve patient dignity. A booklet written by lay members of the Clinical Oncology Patients’ Liaison Group of the Royal College of Radiologists offers recommendations to enable medical staff to provide the best possible service.16
A patient-centred service would inform patients they could use two-way intercoms in radiotherapy rooms in an emergency.17 (International Atomic Energy Agency radiotherapy safety recommendations state, ‘There should be audio communication from the patient during treatment’ Design and implementation of a radiotherapy programme: Clinical, medical physics, radiation protection and safety aspects IAEA TECDOC-1040. http://www.inca.gov.br/pqrt/download/TECDOC_1040.pdf)
15 Dickinson D, Theo Raynor DK, Kennedy JG, Bonaccorso S and Sturchio JL. What information do patients need about medicines? BMJ 2003; 327:861-4.
16 The Royal College of Radiologists’ Clinical Oncology Patients’ Liaison Group. Making Your Radiotherapy Service More Patient-Friendly. London: The Royal College of Radiologists, 1999. Available at: http://www.rcr.ac.uk/index.asp?PageID=149&PublicationID=256 (accessed 24 November 2007).
17 The Royal Marsden NHS Foundation Trust radiotherapy patient information booklet. Available at : http://www.royalmarsden.nhs.uk/RMH/cancer/treatment of cancer/treatmenttypes/radiotherapy/radiotherapytreatment.htm (accessed 16 November 2007).