Stories of Cancer
Giving Voice to Real Experiences

Healing Changes

Excerpt from ‘Nothing Personal, disturbing undercurrents in cancer care‘, by Mitzi Blennerhassett – 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.

Paternalism, the fight for information and the process of being processed (and devalued as a matter of routine) have caused far more stress than the cancer itself. Even close friends don’t understand why the need to improve cancer services has become such an obsession, or why I seem so detached, even taciturn. I have a great need for the medical profession to understand. ‘We need to speak to each other’ repeats and repeats in my mind.

Hoping to raise awareness among a larger group of health professionals, I submit an article to the prestigious British Medical Journal (BMJ) and, incredibly, it’s accepted. This is indeed a time of change.

The depth of understanding shown by doctors’ commentaries has a powerful healing impact on me. I read their words over and over again, soaking up solace from their acknowledgement of my suffering. Interestingly, the letters of response show views from either end of the spectrum: one takes understanding to an even higher level while another eminently illustrates to the medical profession at large why change is needed.

The supportive doctors join the one who had recommended the use of general anaesthetic for the rectal examination in a ‘virtual’ treasure chest collection of patient-centred doctors in my mind. I realise I am still searching for compassion.

Figment

A Thing apart am I
A happening, touched with a Romany need
Restless I flee, forever seeking

Lone traveller, moonkissed am I
Inconstant changeling, firefly
I flit between the stars
You hear me soughing as an autumn breeze
And keening is my cry

A passing thought am I, half seen
A haunting, part-glimpsed from the corner of an eye
Wraithlike, spiriting the land
Then with the merest flicker of a lash
Evaporating to a dream

Torn fragment of cloud am I
No salt upon my tail
I ride the crests, wave borne.
Knowing no rest, I conquer sleep
Just as the Deep

What cage could hold the echo of a memory
Free must I fly
If tethered but a single day, I fret and die

I’m now a degree student, a member of the Community Health Council and heavily involved in voluntary work. Life should be back on track, but it’s not. A balance between constipation from pain pills and the effects of Lactulose syrup is hard to achieve, while daily pain and fatigue ensure ongoing isolation. This is no ordinary tiredness. I have no stamina and after the slightest exertion I feel ill and long to lie down. All my joints ache. The oncologist had said radiotherapy would go on working for years and from what I have learned I’ve guessed that the massive amount I had is the reason further treatments are not an option. Being super sensitive to cold, cigarette smoke, exhaust fumes and noise is now ‘normal’ to me. I have urinary and faecal urgency. There is ongoing pain.

Cancer charities’ patient information does not prepare me for these problems. It does not supply the individual detail most patients seek and even seems to ape medical paternalism with its ‘protective’ omissions and positive generalisations….’

People assume I’m ‘putting something back’ and smile in admiration. But I don’t see myself as altruistic. I don’t have a choice. I’m driven. Life has become a quest for truth; a mystery to be solved; a need for change.