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.
Referenced discussion sections after each event look at better/evidence-based practice.
‘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 7, Chapter 7 page 30 – 34
Tangle of bodies, dropped en bloc
Threshing, flailing, clawing
Bobbing heads shouting, sinking
Stretching for the single rock in the empty, shore-less sea
Once again, I have no written information about my condition, treatments, or sources of help and no idea what information I might need or how to access it.
The traffic is heavy. When finally I reach them, the children stand in a huddle, cold wet and forlorn, like abandoned dogs. I mutter apologies, but can’t offer an explanation of why I am late, or where I have been. Their puppy eyes deliver mute reproach as they clamber in. I’m full of self recrimination for having failed them and hope they’ll chatter among themselves, avoid eye contact with me in the mirror, not read ‘death’ written there. But I needn’t worry. They are tired, wet teenagers, their minds full of missed television programmes and evening homework. The air is heavy with disgruntled silence.
Concentrate on the road! Banish all thoughts of cancer, treatments, children, death, until I get home. How long before I can make that phone call?I need to know, now! Concentrate!
The windows soon steam up and darkness shelters me from prying eyes until we are forced to stop at a zebra crossing. I slump down, glad of the obscuring rain. As we join the notoriously dangerous dual carriageway, the rush hour is in full swing…
…Somehow we arrive home without fatalities.
The children give searching looks when I bustle them into the sitting room and ask them to stay there while I make a private phone call, but I can’t explain. A protective barrier has sprung up between us. I can’t even think about how I’m going to tell them. I have to concentrate on this call to the consultant, the focus of my hope. My head feels as if it will implode.
It’s ringing. I wonder if he’s still there. He answers. I give my name.
“I’m afraid the results show there are some cancer cells present…”
‘Some’? In a lump the size of a pea there must be thousands! Stop minimalising!
So I’m going to die. I don’t want to go through terrible treatment if it means my last few weeks will be ruined. ‘He’s terminal, but he doesn’t know it’… bounces around my brain. After so much deception, how can I trust them? …
Wasn’t it reasonable to say there were ‘some’ cancer cells present?
Yes, my reaction was ‘over the top’.
Why was it ‘over the top’?
I was in shock, so my senses were fully charged, my reactions exaggerated. Because they had lied, I was now over-analytical, trying to sift truth from fiction.
Did you want to be given biopsy results over the phone?
Yes, absolutely! Every second of not knowing was worse than the worst news. I was very grateful.
You gave your consent to treatment over the telephone?
Things were different in those days. Apparently, I signed a form later, for the implant procedure. It was standard procedure because of risks associated with general anaesthesia. I knew of no other risks. There was no consent ‘process’.
What needed to change?
Giving properly informed consent for radical or invasive procedures should now be an audited process, not just a case of ‘getting a signature’.13
Patients need full information about treatments, risks and benefits if they are to give informed consent.