Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing

Nothing Personal is now available in Kindle edition, as well as paperback. A patient experience with referenced discussion sections looking at what needed to change and better/evidence-based practice.

http://www.amazon.co.uk/Nothing-Personal-Disturbing-Undercurrents-Narratives/dp/184619010X

‘This is a beautifully written book, styled in a natural mix of prose, poetry and discussion points, which provides a rare insight into the thoughts of someone who can express their innermost perceptions and feelings …This remarkable book…should be on the essential reading list for those striving to improve the quality of care for cancer and to understand and improve the experience of their patients more generally.’
–Professor A Niroshan Siriwardena, Quality in Primary Care 2009;17.

Excerpt 5
Chapter 4, p 16 – 19

“…Did you think you might have a tumour?”

The tone, ‘nice weather for the time of year’, makes a mockery of my situation. Self-recrimination envelopes me. I should have realised! He’s saying I should have realised earlier! It’s my fault the shock is so great.

I am hugely aware of my lungs; of the mechanics needed to be able to speak. Precious little air is coming in, but it’s going out so fast there is none left for forming words. My body has seized up. It takes a huge effort to speak…

…He’s talking again, his words fighting their way through porridge. With my senses painfully fired up to explode, I strain to process information, but thoughts whizz off at tangents.

… “There are three options for treatment,” he continues. “We can remove just the lump…” Yes – great – go for it. “…or we can remove a section of bowel and give you a colostomy…” A bag? Horror of horrors! “…or you can have radiotherapy.” Fear of the unknown grips me. I am barely breathing now.

“The first option is the most likely, since it has not invaded the muscle,” he slips in, easily.

‘Since it has not invaded the muscle’! I had not thought about it invading any muscle. But that’s good. It’s just a little lump. Easy to take out…

Discussion
…Were you able to remember what was said to you after being given the diagnosis?
Every word, every part of the consultation, kept replaying in my head.

What needed to change?
Doctors need to familiarise themselves with case notes in advance of consultations.

Clinicians delivering bad news need specific training.3 or they are likely to cause harm and affect a patient’s subsequent adjustment.4

The benefits of taping significant consultations are now well recognised.5 6 Patients can check and come to terms with what has been said and formulate questions, saving time at the next consultation…’

Chapter 6. Page 22 – 23
‘Smiles are not enough

And now I’m passed from one to another
And find there is even more to discover
You don’t seem to value the thing I most need
But without it, I bleed

I so much want to believe in your smile
But it’s clicked on and off (to cover the guile?)
Why can’t you see that, by shutting me out
You leave me in doubt

…My feet belong to someone else. Like Moira Shearer in ‘The Red Shoes’7 I’m being forced to walk where I don’t want to go: through the hospital entrance – into the general waiting area – try not to meet anyone’s eye. Have they all got cancer, too? Is there time to go to the loo? But my name rings out – the voice seems loud and strident. I cringe. Like dutiful schoolchildren, or mesmerised tourists, we follow in caterpillar squiggle to the next waiting area. ‘Around this corner, ladies and gentlemen… and to your right, housed behind anonymous doors, are the Unapproachables, Guardians of the Unthinkables and Unmentionables’ – and on your left, a collection of the Untouchables…’

…The friendly, informal manner is immediately reassuring. The kind eyes and caring tone invite trust. I feel he will do his best to save my life.

“There are two options for treatment,” he is saying, the voice as soft as summer rain, “Removing just the lump is not possible since it has invaded the muscle.”

Two options? It has invaded the muscle? No! That’s wrong…he told me… A flurry of icicles finds its target. I’m caught up in conflict: grateful for the gentle tone, yet unable to accept the disparity of this distorted echo of the first consultant’s words.

There have been no further investigations… so there never had been a third option!
The first doctor had known all along and lied! Stupid! Stupid! Stupid! I’m curling up in humiliation, struggling to get to grips with this. Yet again, the double sledge-hammer: bad news compounded by deceit as shocking as my reduced options and as devastating as the cancer diagnosis itself. Why should they equate ‘patient’ with ‘child’? Why assume an authority over information about my body? Why, so cruelly raise false hopes?

… They are the only thing between me and death. I desperately need to be able to trust them, or I have nothing to rely on. But how can I trust them if they are not 100% honest with me?’

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About bmitzi

Medical writer, author, artist. Cancer campaigner. Aiming always to improve health services and bring compassion into health care.
This entry was posted in anal cancer, books, Breast Cancer, Campaigns, clinical trials, Compassion in healthcare, palliative care, patient safety, patient/public involvement and tagged , , , , , , , , , , . Bookmark the permalink.

3 Responses to Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing

  1. Malcolm says:

    High time these consultations were recorded isn’t it…particularly when the less ethical amongst their ranks either tell you there are no treatment options (to avoid the NHS in the UK, and/or private healthcare insurers having to pay for it ) OR try to recruit you into some dodgy ‘trial’ of an unproven treatment, the side effects of which may kill you (which many chemotherapies do)….how can anyone who is clinically naive take any of it in on the spot??????

  2. bmitzi says:

    It needs a concerted campaign by cancer charities with influence. A CD is cheap as chips and would allow patients to assimilate information from consultations at their own pace, in their own home and to search for further sources of information based on that knowledge. They could then formulate written questions, saving time at the next consultation. Best of all, they would have a record of precisely what they had been told – after all, we are supposed to have a culture of openness now…but only the few, dedicated clinicians offer this.

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