Stories of Cancer
Giving Voice to Real Experiences

Building Blocks

‘There is no certainty; there is only adventure. Even stars explode.’ – Roberto Assagioli

The following includes excerpts 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.

As I walk the dogs slowly down the lane one evening, I feel at one with nature, a minute part of this wonderful world. One day my bones will feed the cycle of growth and beauty. And that’s fine. Cancer has changed my perspectives and closeness to death has made me realise I can no longer live within a broken marriage. But it’s two years later before I am strong enough to leave my husband. I manage to rent a bungalow and apply for state benefits, but have no income…

I never set out to write poetry or to use writing as a therapy, but conflict and playback did not diminish with time. One night I’d gathered together my notes about things that did not add up, to prove that their ‘game’ was not all in my mind, and in writing down how each event had made me feel, I’d slipped inadvertently into ‘poetry mode’. After that, poems began erupting regularly, night after night around 3.00am. They were simply a release of repressed feelings as my need to communicate what was so wrong spilt over. I didn’t consider them to be real poetry. I called them my ‘pomes’.

Writing them had helped me to sort things in my head. The (counselling course) tutor said they deserved to be shared, but who would want to read them? I’d shown the first few to a friend. “But Mitzi” she’d said, aghast, ‘that was over a year ago!”

“No,” I’d replied. “That’s when it all began.”

In September 1991, just over a year after the end of treatment, a nurse colleague from the counselling course recruits me to help set up a cancer support group…

At the opening meeting, a demarcation line is drawn between ‘them’ and ‘us’ when we are asked to identify ourselves as ‘patient’ or ‘professional’ and say what we want from the group. The Chair and Vice Chair (hospital social workers) are definitely in charge and seem to expect people to want to talk about their experiences.

The Vice Chair puts up a flip-chart and lists the different emotional stages that cancer patients will experience: denial, anger, bargaining, depression and, lastly, acceptance. There is a stunned silence from patients and carers. Not only has acceptance of death been included as an inevitable part of the cancer journey, but to discover that what we should be feeling and when we should be feeling it has been predetermined is even worse. I can’t relate to this, any more than I could to the assumption that I would think ‘Why me?’ at diagnosis. I’ve only experienced ‘Their’ denial. And why should the diagnosis of cancer make me angry? – I certainly would not blame doctors if they could not cure it. My acceptance of death came at the beginning of treatment and I had no wish to bargain. Depression? ….  Allow me to know what I think and feel, even if it differs from the rule books.

The wife of a seriously ill patient bursts into tears and rushes out of the room. I follow to comfort her. She feels as I do. They seem to have a need to categorise, to neatly package, to control. Who has decided these things? Have they had cancer? Time for cancer patients to re-write the text books! Ever afterwards, I have an aversion to flip-charts.

Discussion
The poems expressed what you had not been able to communicate to healthcare staff?
Yes. Things that could not be said at the time. Some things were taboo.

‘Taboo”?
Questions seemed to signal ‘inability to cope’ rather than ‘need to know’. Raising uncomfortable issues seemed to question clinical competence (their possible ‘failure’). Anomalies built up. I found myself keeping quiet, not only to show I could cope, but also to ‘protect’ clinicians.

You felt strongly about the list of emotional stages people experience?
Some cancer patients may go through these stages, but I had not.

How did it make you feel?
It reinforced the feeling that, by becoming a cancer patient, I had lost my autonomy and was just a ‘case’.

You did not feel anger?
No. Why should I? I could not believe that some patients became angry with clinicians who gave them the bad news. A cancer charity originally planned to publish one of my poems (Damaged Goods) alongside an article on anger, until I told them it was supposed to express devastation. I wished I could have felt anger. It might have been healthier.

(In 1997, following a diagnosis of breast cancer, the breast care nurse greeted me in funereal tones. “It’s a dreadful time.”

“Actually, after a 5-month wait for a referral, it’s a relief,” I told her, “but very inconvenient and frustrating.” By then I was doing a degree and working frantically to prepare artwork for an assessment and end of year show.

“Frustration can be very close to anger…” she returned, glibly.

Aargh! In that moment I very nearly felt the anger she seemed determined I would feel.)

People read into things what they expect to see. Perhaps much of the ‘anger’ seen in cancer patients is due to expectation. Perhaps most anger is generated when information is withheld.

What needed to change?
It was inappropriate to confront patients with the list.

Patients’ feelings need to be acknowledged.

Please – no assumptions. They hurt!