Stories of Cancer
Giving Voice to Real Experiences

Seeing the Person in the Patient

Excerpt from ‘Nothing Personal, disturbing undercurrents in cancer care‘, by Mitzi Blennerhassett – Radcliffe Publishing, winner Medical Journalists’ Association Open Book Award: a patient narrative which includes discussion sections after each event looking at what needed to change, with references to better/evidence-based practice.

Festering conflict spirals out of control. It’s all my fault. I can’t communicate with them. I’ve closed down. But why did I close down? Self-doubt nags at me. Only I can heal myself – must fight back harder. In the car, I turn the music up and tell the ghosts to leave me alone.

But as I stand in a queue one day, someone paying her newspaper account identifies herself by number and for a few moments I’m rooted to the spot. I become similarly transfixed when someone on the radio describes being held hostage and tortured. It’s the same if anyone says, ‘nearly done’ or ‘nearly there’.

A consultant has prescribed Naproxen 500mg twice daily, for head, neck and back pain, but these only seem to worsen my symptoms. My stomach burns and it feels as if my nervous system’s outer coating has been removed. My new GP is quick to spot cause and effect. “Have you lost your elastic?” he jokes, as my skirt settles on skeletal hips. Instead of examining my back, he digs a finger into my stomach.

“How does this feel…and this?”

“Aargh!”

He thinks various anti-inflammatory tablets and pain pills prescribed over the past 2 years have been eroding my stomach and intestines (which accounts for the two sore places I’d described to the oncologist). No-one seems to have considered what effect such drugs might have on someone whose intestines had been blasted by chemo-radiation and who can only manage a minimal diet.

When he asks about my home situation and I tell him that being unable to pay the next month’s rent doesn’t really help my stress levels, he gives me a note to take to the Department of Social Security (DSS). Within a few hours I’m able to collect a back-payment cheque. My son eats well that night.

Discussion

Why were you so affected when the woman identified herself by number?
She was reduced to a number. I found myself momentarily identifying with tattooed concentration camp victims.

But you didn’t have a radiotherapy planning tattoo.
No. I think it was a psychological reaction to being controlled – one among thousands – my hospital number.

What needed to change?
Communication between professionals should mean each has an overview and understanding of a patient’s medical history.

There needs to be a designated person in primary and in secondary care, who will take responsibility for ensuring all cancer patients receive financial guidance, according to their changing needs.

Patient-held records could ensure patient needs were being addressed.