Stories of Cancer
Giving Voice to Real Experiences

Memorised

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.

Scrutinised
Itemised
Categorised
Patronised
Dehumanised
Disenfranchised
Institutionalised
Randomised?
And filed

But not yet finalised

A month passes and still I have no income. The Benefits Office says, because I am doing a part-time college course, my case (I am another ‘case’) has to go before an adjudicator – which could take months!

After moving house, I’d registered with a new GP. He’s young and gives me lots of time, but when I try to tell him about the traumas and the ongoing playback I’m still experiencing, he says, “I’ve had cancer”.

I shut up then. My experience is too much for anyone, too uncomfortable, too challenging. I don’t want to lay blame. In deepening conflict, I am torn between the need to speak out to change things for future patients and reluctance to criticise those who had once been kind friends. Who had saved my life.

I’d hoped for 1 year of life, and already I have had 2. The approach of spring brings the next hospital check-up. I dread facing the consultant and nurse ‘counsellor’ so much, I postpone the appointment but, as before, leave plenty of time for another patient to be seen in my place. Two weeks later, I return home from college to find a new appointment on the mat. I read it twice. According to the date and time, I should have been at the hospital that very morning! The letter has a first class stamp, but I can’t make out the date of posting. I telephone immediately to make my apologies (although it’s not my fault) and explain what has happened. Getting through to the right department takes patience and costs precious money.

When the next hospital envelope drops on the mat, my insides turn to water, but it’s not a new appointment. It says they understand I hate attending for check-ups, so they will not be sending any more appointments. If I have a problem, I can contact them. They have discharged me! I try to console myself that at least now there can be no more withheld information, no more nasty surprises. But I feel cast adrift.

Discussion
The post did not arrive before you left for college?
The single delivery always came at lunchtime. Years later I read in my medical notes: ‘she says the post arrived after she had left home’.

How did this make you feel?
It was all part of not being heard, of judging me by their standards.

‘Their standards’?
Their standards of honesty.

How did you feel when you were discharged?
Abandoned. I needed them as a safety net. I also needed to maintain contact if I was to have any hope of resolving issues and effecting change for future patients.

Why were future patients’ needs so important to you?
I needed peace of mind. I wasn’t ‘hearing voices’, but the need to prevent other patients suffering what had happened to me was a permanent, leaden conscience. Sometimes, when events replayed in my head, I found myself protesting aloud – even in public! That was frightening. I thought I was going mad.

What needed to change?
Medical notes should afford patients the respect health professionals would like for themselves.

Discharge plans should be discussed with, and agreed by, patients.