Stories of Cancer
Giving Voice to Real Experiences

Mitzi’s story

I have a great deal to be thankful for: I am still here, twenty years after treatment for carcinoma of the anal canal. But I’m still affected by the traumas – the additional traumas – and the knowledge that things need not have been that bad. Although I no longer suffer ‘playback’, it’s hard to come to terms with unnecessary suffering.

The diagnosis was given as an opening sentence and followed repeated (false) reassurances. Information conflicted or was tailored, drip-fed, un-true, or withheld. Without full information and complete truth, I had nothing to rely on: honesty cannot be partial. Pain relief was totally inadequate. Side effects were not acknowledged. My needs were not met. The result was psychological and physical harm.

Initial conflicting information was so mind-blowing, I started jotting down what had been said immediately after each consultation with the oncologist. As conflict built up, writing and keeping a record convinced me my disquiet was well founded: anomalies were not all in my head. I felt I was living through ‘One Flew Over the Cuckoo’s Nest’, so great was the feeling of being controlled. Writing helped to clarify my concerns, but stress escalated (as did pain and other side effects) and, with no support, there was no hope of resolution. Then poems started erupting around 3.00am, night after night.

The following includes excerpts from my book, ‘Nothing Personal, disturbing undercurrents in cancer care‘, Radcliffe Publishing, winner Medical Journalists’ Association Open Book Award (Author’s Note). A patient narrative with a difference, it includes discussion sections after each event looking at what needed to change, with references to better/evidence-based practice.

‘Truth hurts, but deceit hurts more’. Lesley Fallowfield.

Open book

Questions answered with a question
Gather thoughts and buy some time
For invention
“Black is white”
(You must believe me)
Underlining, with a smile

Something I forgot to mention –
Want to know how I divine your intention?
Want to know the telltale signs?

Momentarily, you ‘lose it’
Fleetingly, you look aside
Just before the ‘reassurance’
When you dare to meet my eyes

Not a poet’s poems, just ‘a cancer patient’s release’, the product of an unquiet mind with no pretence at literary merit, written when I was still very fragile: a search for meaning in nonsense, order in chaos. Indebtedness competed with unmet needs in endless circles, while guilt barred any resolution. I felt guilty for not communicating effectively, for resenting the plastic smiles, the kindly-meant paternalism; for needing more than they could give. I felt an overwhelming sadness that my experiences could be so bad, when everyone seemed to be doing their best. In the end, I could feel nothing. But within these lines lay a call for acknowledgement and change. These were my feelings, laid bare.

I had never heard of the term ‘therapeutic writing’, but by chance found myself using writing as a therapy. Poems can be very emotive and can communicate what ‘could not be said at the time’.

I was encouraged to keep writing when someone who read my efforts felt enabled to set down her own experiences and cried for the first time since losing a child to cancer ten years previously.

I needed the whole truth, however hurtful, rather than well-meant deceit. I needed health professionals to understand what effect poorly communicated information could have; how withholding and tailoring information according to a patient’s assessed coping capabilities can be damaging; that my stress was due mainly to their paternalism – yet they clearly attributed it to ‘fear of cancer’. I needed them to stop making assumptions about me; to recognise the strong, inner me.

Beyond the sausage skin

Disregard my wobbly lip
Ignore these foolish tears
Look beyond the quivering wreck
And credit me with at least a speck
Of the mettle I had before

With stainless steel my jaw is set
And my backbone may surprise you yet
With its carbon fibre core

I wanted to use the poems to promote understanding of the patient’s perspective but, although medical journals later published articles about my experiences, this was the early 1990s and feelings were not allowed. So I wrote, and I cried, and I shut them away. Later involvement in health services prompted me to dust them off and they have been used in medical education, to inform planners of a new cancer centres and to raise money for charity’ – (proceeds of a home-made DVD when some were put to music). They have also featured in nursing/palliative care journals.

Looking on the bright side, having a bad experience of cancer helped me to make positive changes in my life. ‘Tragedy into opportunity’ and all that. I was a shy little mouse, but helped to establish a cancer support group and ended up running it for about twelve years. Though I had found it difficult to speak out about my own issues, I could not keep quiet when I heard other patients’ stories. I became a member of the local Community Health Council and membership of local and national health organisations followed. Caring passionately about the need for change gave me the courage to speak out at conferences, locally, nationally and even internationally. Inadvertently, I became a cancer campaigner and patient advocate. Writing in patient charity magazines, such as Cancerlink’s LinkUp and CancerBacup News, extended to commissioned articles in major medical journals, a chapter in a medical book and now my own book. I have cancer to thank for becoming an author. The shy little mouse became the ‘mouse that roared’.

Copyright Mitzi Blennerhassett 2008