Tasters

Nothing Personal, disturbing undercurrents in cancer care

‘Truth hurts, but deceit hurts more.’

Lesley Fallowfield

Author’s note

“How are you?” “ Fine!” – “How are you?” “Fine!” Other people might have been psychologically affected by cancer, but not me. My own ghosts were well battened down.

Then came the poems, involuntarily flooding out at 3.00am, night after night. 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 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 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… … …

… … … Today’s patients continue to raise the same issues, but clinicians are now being encouraged to get in touch with their own feelings, so perhaps my story will be useful in helping them acknowledge the emotional and psychological disturbances that can affect both patient and doctor

Chapter One

…A lone gull makes its way across the sky, battling against the wind. Unremarkable enough, yet it’s enough to whisk me back through time. Along with certain words and phrases, this bird has assumed a particular significance in my life with the power to endure through seventeen years; to mock my defences; to open old wounds.

The day that brown envelope dropped through the letter-box was similarly unremarkable, but it was the butterfly that would create a tornado. True, my stomach tightened as I read the hospital letter, but that was to be expected. I was on unfamiliar ground. But there were no warning bells as I noted down the appointment in my diary. No omens. No ‘signs of ill portent’. Not a black raven in sight! Yet it heralded the most momentous event in my life. Soon, a spattering of red-ringed reminders would deface the calendar, prophetically resembling red-rimmed eyes. The world would tilt, a chasm would open and for a moment time would stand still. There would be mind-battering aftershocks; life-shattering changes. Memories would become re-categorised ‘before’ or ‘after’. And a year that should have been ordinary would become a milestone, a memory gauge more powerful than birthdays, marriages or deaths.

You’d have thought the gods might at least have given me a hint of what was to come.

………….

Chapter Four

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

………….

…He’s sitting behind a desk, reading my notes. He has yet to acknowledge my presence. I sit down uninvited, still buoyed up by lingering remnants of Mary Wesley’s humour, nervously hoping my smile will convey confidence. Maybe it’s something that can be cured with drugs, or diet. Yes or no? Please tell me quickly – the thought of being cut open is terrifying.  He ignores me.

“Good morning”, I offer, tentatively, a mouse faking bravery. He looks up, but returns neither my greeting nor my smile – and his words freeze time.

“Yes, well, you have a tumour.” The dry delivery as nonchalant and bored as a weather forecast.

The words land like a physical blow, delivered with ramrod efficiency. Ratchets slip in the clockwork of my brain. Falteringly, I try to absorb a statement that contradicts everything they have already told me. Accent on the ‘have’ – ‘just as we’d thought – surely you’d realised?’

What of the smiling reassurances, the outright denial? I’m caught completely off-guard. The shock is total – the effect, pulverising, devastating. Brutal delivery achieves maximum impact. I feel my smile drop away. ‘The smile was wiped from her face…’ How can I be thinking like this…at a time like this! Mangled thoughts compete. A tumour… Why doesn’t he say ‘cancer’? I am going to die. How long…?

A wave of overwhelming incredulity and humiliation slams into me. They’ve known this all along. They have been limiting information about my body as if I was not competent to deal with it! No previous discussion about possibilities or probabilities. No word of warning.  But this is their job: they must be telling people they have cancer every day. Surely they have perfected the best way of doing it? Why have they chosen this cruel way to tell me – stringing me along until the last minute?

Futile questions. Turmoil. It’s incomprehensible. Will not compute! I am going to die! Do I have months – weeks – less? What about my children?I wait, paralysed, expecting words of comfort. But things get worse.

“Did you think you might have a tumour?

The tone, ‘nice weather for the time of year’, makes a mockery of my situation. Self-recrimination envelopes me. I should have realised! He’s saying I should have realised earlier! It’s my fault the shock is so great.  

I am hugely aware of my lungs; of the mechanics needed to be able to speak. Precious little air is coming in, but it’s going out so fast there is none left for forming words.My body has seized up. It takes a huge effort to speak.

Bizarrely, I hear myself whisper agreement, while inside I’m shouting “No! No! You said…you all said it was nothing to worry about. All the way along… ‘nothing to worry about’. What a fool – I believed you! … My GP had laughed…she really hadn’t known…”

Why am I pretending I knew? I don’t lie. What’s happened to me? Is this what’s meant by ‘diminished responsibility’ – like a person admitting to a crime they haven’t committed? Perhaps I can’t admit to being such a gullible fool. But that’s what I am.

I’ve been taken in by con-men. They must have seen and felt the tumour when they first examined me, then again under anaesthetic, but there had been no hint. Nurses, doctors – so many people, would have known. Not me – yet it’s my body. Why didn’t they share their concerns from the outset? Why are they treating me like a child? Do I seem dim-witted?

He’s talking again, his words fighting their way through porridge… … …

… … … 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.3 or they are likely to cause harm and affect a patient’s subsequent adjustment.4

The benefits of taping significant consultations are now well recognised.5 6 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

References

2 Wesley M. Not That Sort of Girl. London: Macmillan,1987.

3 Walker G, Bradburn J, Maher J. Breaking Bad News. London: King’s Fund Publishing, London, 1996.

4 Barnett M M. Effect of breaking bad news on patients’ perceptions of doctors. J R Soc Med 2002; 95:343-47.

5 Tattersall MHN, Butow PN, Griffin A, et al: The take-home message: Patients prefer consultation tapes to summary letters. J Clin Oncol 1994; 12:1305-11.

6 Ong L M L, Visser M R M, Lammes F B et al. Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall, and quality of life: a randomized double-blind study. J Clin Oncol 2000; 18:3052-60.

 ……………………………………………………………………………………..

Chapter Fourteen

I try to concentrate on the changing sky, to find solace in its inconstant moods, a new painting dictated by time and weather. The gull passes on his morning trek. Maybe it’s a different bird, but I pretend it’s my special one.

The young doctor is a welcome diversion, but surprises me by exclaiming, “Ah! The first smile!”

I hadn’t realised. “Sorry.” Why am I apologising again?

He makes a note on his clipboard.So they note your first smile. Interesting! What else?I take note of them taking note.

The oncologist arrives later. He stands at the foot of the bed, all beaming smile and oozed confidence as I prepare for the ‘How-are-you-fine’ routine. He takes in the get-well cards and massed flowers with a sweeping glance that settles back on me.

“Well, isn’t this nice!”

Swap you? I’m in this alien place, fighting death and I’ve just spent two days and nights listening to a dying patient trying to cough. ‘Nice?’  It’s mind-blowing.

I twitch a half-smile and try to see things from his viewpoint, but this continued lack of acknowledgement of my real situation is unnerving. It’s all a game of pretence. ‘Don’t mention the war!’

“How are you?”

“Fine.” There! Got that out of the way!

He talks about the treatment. “And you’ve started radiotherapy?” He checks the clipboard.

“Mm…” You know I have.

“Might as well get them both started,” he suggests with a broadening smile. To my super-charged antennae, the remark is thrown in unnecessarily, with affected nonchalance. It’s the look the dog gives when it’s just been sick on the sitting room carpet – that mixture of contrived innocence and apologetic guilt. He’s trying to put me off the scent – of what?

He asks about my family and where my older children live. Perhaps he’s concerned at my lack of visitors, or maybe he’s just being sociable. At the mention of my husband, I can only mutter, “We are not close.”

People change. Couples grow apart. Both must shoulder the blame, if blame there is. For some, ignoring a problem means it does not exist. Maybe this is one reason why the sense of unreality here hits me so starkly. I’m living a parallel charade.

“Any questions?”

Hoping to mirror his nonchalance, I manage, “Have I got it anywhere else?” My GP will have passed on my message about needing full information, so I’m expecting the truth.

“No.”

It had been the merest hesitation, but it had stretched to infinity as he’d glanced away. Bells are tinkling again.

“You didn’t look me in the eye when you said that.”

There I go again. Blunt. Rude! Out of character – shocking myself!It takes enormous effort to be assertive, but my mouth takes over and says whatever is necessary to get at the truth. At least now he can’t be in any doubt about my need for openness.

“Hrrrmph!” He swallows his amusement and relents. “All right then, we won’t know until you’ve had a scan.” (Smile.)

“When will that be?”

“Next Tuesday.”

Double disappointment slaps me down: he’s still avoiding the truth – and there’s almost a week to wait. I shouldn’t have to prise out information. But I have to overlook this, try again to trust him. He is my lifeline, the only one with the expertise to save my life so, in one sense, his very presence is supportive, even though each encounter buffets me.

Sea of tranquillity

There’s no chance of a sleep

For the TVs all compete

Each channel with another

And the visitors’ chatter

Competing with each other

Drowning out my lamp-post’s

Inconsequential natter

With a deafening, battering

Shattering

Clatter

All the afternoon

So fingers in my ears

I dive for cover

As the volume’s turned up

I attempt to smother

The din. But no-one

Can hear themselves speak

They’re all shouting louder:

A din without a peak

More, much more than my pounding head can take

So it’s ‘walkies’ for me

And my lamp-post on a lead

With pennies to squander

On postcards and pop

We go on an adventure

To the hospital shop

There’s a queue, but no chair

And I can’t stand in line

So I sit on the stair

And think, “They’d better be quick”

And then, “Where shall I be sick?”

…………………………………………………………………………

Chapter Forty-Seven

“So you’ve had cancer?”

“Yes.”

“And you’re doing a part-time art course?”

“Yes.”

I’m going through divorce proceedings, but it feels as if I am on trial.

Minutes earlier, for what had seemed an eternity, I’d sat motionless on a bench in the dismal, windowless inner lobby of the Divorce Court, nervously expecting my husband to arrive at any moment.Sharing this space had been a couple who looked as if they had slept in their clothes. Occasionally, they bellowed at two grimy children scrapping on the floor, faces and sleeves encrusted with snot. Lawyers in black gowns had appeared intermittently, consulted the blackboard on the wall behind me and disappeared, my presence unacknowledged, even by a glance. The sign, ‘Bailiff’s Office’ above a door had been a stark reminder of my reduced circumstances and lowered status.

The counselling course had shown me the power of the mind: that how we deal with stress can affect how we feel. I’d decided that survival lay in viewing this Dickensian scene as spectator, rather than player and in my imagination I’d became an author, soaking up material for my next book – until they’d called me in.

“What income do you have?”

“None.” It’s getting harder to breathe.

I sit directly in front of the judge.I might as well bein the dock. Oblivious to my surroundings, my eyes plead for clemency. Will he grant the divorce? Will he allow my son to stay with me?

“What is your husband paying you?”

“Nothing.” My husband still has not arrived.

“Nothing?”

It’s reminiscent of hospital consultations: ‘What does your husband do? Are you back at work?’

“No.”

I’m a cancer patient without any income. Does this make me an ‘unfit mother’?

“What state benefits are you getting?”

“None. I’m told my case has to be decided by an adjudicator because I am doing a part time educational course. It could take months.” I can hardly breathe and force the words out. I must appear strong, calm, capable – well-balanced. Keep eye contact. No tears.

“When did you last get in touch with them?”

“This morning.”

Silence. He consults papers.

“Well they’d better hurry up and do something.” He sounds rattled. I don’t know if he’s annoyed with me, or for me.

When, finally, I escape, I still don’t know what decisions will be made. Later I learn my husband’s presence had not been required.

Chapter Forty-Eight

Doors

I barricade the doors, I seal the edge

Nothing to pass through

I banish you

Invasive memories, that twist the knife too much

With tender touch

Relentlessly

Slicking through

Back you seep

Infusing me

They have their own laws, these ghosts

They make their own doors

Three months after moving out of the matrimonial home, I still can’t eat normal sized meals, but happily self indulge with chocolate bars and ice-creams, trying to gain weight. The pain of defecation brings daily reminders of past ordeals. Not that I need reminding. Playback still plagues me.

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