Stories of Cancer
Giving Voice to Real Experiences

Being Kind to be Cruel

Excerpts 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.

Being Kind to be Cruel

Freeze-dried moment
History-changing
Time set waiting, gears set grating
Walls of glass come slamming down, setting me apart

Now there is ‘before’ and ‘after’
Stark. Oppressive.
Brightness. Dark.
‘Neural gridlock’ in the footlights’ glare
Yet all my senses scream, fine-tuned,
At your words, lasering gelatinous air

Thoughts fragmented, deconstructed
Humiliation!
How naïve to have believed
Duped!

Disbelief at the deceit
Incredulity
That you should choose this way to break the news

– – – – –

Backtrack
Replay holds no answer
Not even a hint
All saved for today
Confidence shattered, elusive as trust
The trust that I’m craving
Now, an absolute, tangible ‘must
But you don’t seem to know what you’ve taken away

Without a firm grounding, I’m hanging mid-air
But faultless detachment frees you from care
Control and delivery done with precision
Maximum impact, exquisite incision
While I must be looked upon with derision
-You’ve known all along and not shared

– – – – – – –

False reassurances, smiles on a tiger
Worked like a charm
But you don’t seem to know you’re compounding the harm

As from another world I see
A vulture, squat upon your chair
Uttering unspeakable things
To me

My world upended, devastated
Intrinsic normality, to you
The dog-eared script, the repetition
Understandable boredom, hard to disguise
But it’s my life
And even now you’re not telling it straight

No comfort there
A corridor, with wooden chair
Busy people passing through

“A cup of tea?” A nice hot cup of tea!
I could have laughed
If only I could have cried’

No word of comfort. No hand in mine. No written information. No sources of support. I leave clutching an appointment card. I have cancer and I might die. I am to have treatment of some sort, but I don’t know when. And I might die. There is no-one I can tell. And soon, I might be dead. How long do I have…? Cancer patients get told how long they’ve got, don’t they? Why haven’t they told me? I feel cheated.

I emerge from the hospital in a drunken daze. My brain has been replaced by a mass of tightly knotted wire linked to an explosive device and count-down has begun. People walk past me. Traffic is flowing. A bird sings. The world around me continues to function as if nothing has happened.

Somehow, I totter to the car and drive home.

Discussion

How did it feel when the consultant ignored you?

It felt like a discourteous demonstration of his authority.

Why do you think this happened?

He had not read my case notes in preparation for the consultation and was catching up.

What did you think of the manner of delivery?

It felt cruel. He seemed determined to retain a pretence of normality at any price, to prevent having to deal with my emotions.

What effect did this have on you?

The lack of openness, coupled with brutal delivery, damaged my trust in the medical profession, at a time when I most needed it and with long-term consequences.

Why do you think he asked if you thought you had a tumour?

I felt it allowed him to pretend I had been prepared – that he had not caused me harm. If he had been checking my understanding, it was cruelly inappropriate timing because of what had gone before.

How did it make you feel?

Doubly humiliated.

Were you able to remember what was said to you after being given the diagnosis?

Every word, every part of the consultation, kept replaying in my head.

What needed to change?

Doctors need to familiarise themselves with case notes in advance of consultations.

Clinicians delivering bad news need specific training or they are likely to cause harm and affect a patient’s subsequent adjustment.

The benefits of taping significant consultations are now well recognised. Patients can check and come to terms with what has been said and formulate questions, saving time at the next consultation.

I needed:

* complete honesty and openness

* to be advised from the outset that cancer was a distinct possibility

* to be encouraged, with emphasis, to bring someone to consultations

* to be asked how much I wanted to know

* to be put in touch with a cancer nurse specialist

* to be given a tape of the consultation

* to be enabled to communicate my needs and feelings

* privacy, support and time to recover

* to be put in touch with other people who had the same cancer

I needed written information on:

* my particular type of cancer

* treatment options

* local and national cancer charities and support groups (including independent groups)

* state benefits