Winner, Medical Journalists’ Association Open Book Award; essay prize, RC Nursing; ‘a landmark for the patient voice’ – Macmillan Cancer Support (Exchange).
Chapter 6, page 23 – 30
‘He’s telling me the tumour is in the anal canal, but has spread down into the muscle as well as along to the anus. Surgery would leave me with no control over my bowel movements. His voice is ‘trust-me-kind’, but the word ‘colostomy’ hangs between us, to be joined by ‘chemotherapy… radiotherapy… radioactive implants’ and side effects of ‘nausea, diarrhoea, tiredness and wind’. That doesn’t sound too bad. What will all this mean? What do I need to ask? Just when I need my brain to display some brilliant intellectual capacity, it’s become a redundant computer, running on soup.
“Any questions?” – (smile.)
I am still cowed by the deceit but, half prepared this time, pull a crumpled list from my pocket. It’s difficult to speak without any air in your lungs and your stomach fused to your backbone. I focus hard on deciphering my scrawl and manage, “Will I be able to drive?”
There had been the slightest hesitation, but I pretend not to notice. It’s so important to be able to retain my independence. Not to have to be driven by my husband. If there is a chance, I’ll manage.
“Will I be incontinent?” – the dreaded word forced out in a barely audible whisper, despite the effort to make it sound like an everyday question.
There’s an even more noticeable hesitation before, with supreme nonchalance, he returns, “Which – urinary or faecal?”
Red alert! He’s playing for time. Why suggest ‘urinary’ when the cancer’s in my backside. Might I be doubly incontinent? Thoroughly disconcerted, my senses are sucking in signals like giant antennae, my insides liquefying in dread.
“Both – either.” I’m a high tension wire, ready to snap.
“Shouldn’t be.” – (smile.)
‘Shouldn’t be’? Is that meant to reassure? If neither possibility is likely, why the prevarication? Sounds like fence-sitting to me. But I can’t push…’
…’“What’s it called?”
“Squamous carcinoma of the anal canal.”
“How big is it?”
I’m still struggling to push out the words. I want to know what it looks like (must I fight imagined monsters?) and how the treatment works, but he has other patients and the nurse is saying, “So if you’d like to slip off your clothes below the waist…” He’s expecting to examine me!
They are both staring at me. I’m such a fool! Overcome with embarrassment for having misunderstood, but also at having to get undressed in front of an audience, I expect him to leave the room, or at least turn away. I’m not used to stripping naked in front of strangers. Just because they are health professionals does not make it any easier. Frozen in consternation, I look towards him expectantly. He seems rather amused, but turns away a little. Am I being ridiculous? In a few moments he is going to be looking at my naked body.5
Once I’m bare from the waist down, I lie rigidly, my eyes riveted on his face, ready to pick up the slightest signal.
“Just relax”, he smiles encouragingly as he prods my abdomen, now tauter than a trampoline. But, as he fingers the lump in my groin, I watch the shutters come down. Seriousness hangs in the air. A frosted vice grips my insides.
“That’s just a hern…” The distant, rasping voice drops away. Even before he answers, ‘who told you that?’ I know. It’s not a hernia. It never was a hernia. My GP had been wrong. The first consultant had intentionally misled me – twice. Cancer has spread to my lymph glands. No chance now! I am going to die.
“It’s-in-the-lymph-isn’t-it?” I seem to be using my in-breath to speak. There is precious little air passing either way.
“We don’t know yet.”
But I do. Why can’t he just admit it? How long do I have, weeks? – Days?
I need him to talk about this. But there is no discussion. ‘Don’t worry your head about it – our problem’…’
‘…I’m ashamed to have shown any weakness and want to let him know he needn’t put on that sympathetic voice, but my mouth seems to have become disconnected from my brain. From now on, everything I say is passed through a garbelizer.
“I need you to talk to me in a ‘matter of fact’ tone of voice,” I blurt incoherently, as I stand to leave and, in a last ditch attempt to get them to credit me, I add, “I may have a wobbly lip, but I can take it.” This strange protestation brings a placatory smile – and probably just confirms their low opinion of me.
I can deal with bad news. I need them to respect me and not withhold information in future. I need to know everything. Everything!
The nurse sits me in the busy corridor alongside the patients’ waiting area, while she gets his telephone number. I need privacy, yet I’m on public view. Deep in shock, I struggle to retain composure, breathe normally. Every mounting second is mega-stress. I’m going to die… children waiting…try to keep face set at ‘normal’ – eyes down to hide the death sentence from curious strangers.
The consultation replays over and over in my head. How on earth am I going to tell the family? How will I manage to drive home?
“Would you like a cup of tea?”
Hysteria threatens! So they really do give cups of tea to people who are going to die….’
Discussion – excerpts
How did it feel to learn option 3 had never existed and the lump was not a hernia?
It was degrading to find I was not in their confidence and devastating to realise I could not trust them.
Wasn’t it better to hear bad news in small doses and come to terms with it slowly?
No. It meant I had to deal with the consequences of deception, as well as with the diagnosis. There is no such thing as partial honesty.
How did it feel when they assumed you were thinking ‘why me’?
It was unnerving to have those in control wrongly assume they knew what I was thinking. It felt as if their view of me would always be shaped by preconceptions – misconceptions. It was like being caught up in ‘One Flew Over the Cuckoo’s Nest’,8 a feeling continually reinforced during my cancer experience.
Did lowering your eyes indicate you could not cope with more information?
Absolutely not! I wanted to know everything, but needed to hide my emotions.
What effect did their questioning have?
Being questioned, when trying to get to grips with the probability of dying, made things so much worse and felt unkind.
What needed to change?
Patients’ understanding of their situation needs to be checked before treatment is discussed.
Use of decision aids can enable patients to express their information needs and treatment preferences.10 11
Staff communications skills training12 could have prevented assumptions being made and facilitated more meaningful discussion.
I needed them to talk about the biopsy and what the results could mean.
I needed most of the same things I had needed when first given the diagnosis (see Chapter Four) and also:
privacy for undressing and dressing
full information on risks and benefits of treatment options
full information on short and long term side effects, no matter how rare, in order to make an informed choice. Only I could know how these might affect my life.’