While there's life …: hope and the experience of cancer

Social Science & Medicine 59 (2004) 1329–1337

ARTICLE IN PRESS

*Correspond

9351-4887.

E-mail addr

0277-9536/$ - se

doi:10.1016/j.so

While there’s life yhope and the experience of cancer

Miles Little*, Emma-Jane Sayers

Cancer Survival Project, Department of Surgery, Centre for Values, Ethics and the Law in Medicine, Building D06, University of Sydney,

Sydney, NSW 2006, Australia

Abstract

Hope is the subjective probability of a good outcome for ourselves or someone close to us. During mortal extreme

experience, observers and participants in the experience hope for life over death. In cancer, the illness/treatment

experience is similar to the experience of dying, but with the redeeming element of hope for cure, for life over death. If

cure is not obtained, hope for the participant moves to a ‘good death’.

If the outcome is cure, however, the hope for life has been realised for both participant and observer. Hope, which is

always for the future, may now diverge between participant and observer. Observers hope for a return to normality, and

use a discourse of normality which emphasises such things as ‘getting over it’, ‘moving on’ and ‘getting back to normal’.

Survivors may not find the realisation of hope for life to be as comfortable as might be expected. After the euphoria

of being declared free of disease, about 30% of survivors develop post-cancer distress with death salience. They

recognise, whether they want to or not, that they have confronted their own annihilation, and that they will at some

stage have to do so again. We all know that we will die, but there is a greater vividness and proximity in that knowledge

for someone who has been through mortal extreme experience.

Death salience provokes a confrontation with meaning in a person’s life. Thus survivors turn inward to their deep

selves in order to establish an understanding of what their life projects might become. Observers, on the other hand, find

death salience hard to live with, and may turn away from the distressed survivor.

The hopes and discourses of survivors and those close to them may have different structures and different objects.

These differences may help to explain the frequency with which stress and disruption affect close relationships after

cancer and other life-threatening experiences.

r 2004 Elsevier Ltd. All rights reserved.

Keywords: Hope; Mortality salience; Cancer; Survivors; Australia

Introduction

Hope is a word much used. Its meaning is assumed to

be clear. There are, however, evident ambiguities. Hope

can be seen as ‘a support or as a source of disruption in

the care of the cancer patient’ (Bresnahan & Merrill

1999, p. 43). It becomes a ‘disruption’ when it is ‘false

hope’. There are other ambiguities of meaning. It is an

abstraction, with usages that refer to everything from

ing author. Tel.: +61-2-9351-7794; fax: +61-2-

ess: [email protected] (M. Little).

e front matter r 2004 Elsevier Ltd. All rights reserve

cscimed.2004.01.014

high degree of certainty about an outcome (Nuland,

1997, p. 222) to confidence in the meaning of a life

(Nuland, 1997, p. 242). That sense in which meaning

sustains a sense of hope is found in Agich’s account as

well ‘y hope refers to the prospect of meaningful

experience with others at those times when one

most needs comfort and companionship’ (Agich, 1993,

p. 113).

Lupton also describes a ‘discourse of hope’ directed

particularly at cancer. She writes ‘To despair, to lose

hope, are frowned upon as strategies of dealing with

diseases such as cancer. People with cancer are lauded if

they appear to be brave, never allowing themselves to

d.

ARTICLE IN PRESSM. Little, E.-J. Sayers / Social Science & Medicine 59 (2004) 1329–13371330

‘‘give in’’ to the disease. There is an emphasis on ‘‘will’’

which argues that ‘‘if one has enough hope, one may will

a change in the course of the disease in the body’’y’

(Lupton, 1994, p. 67).

Hope can more broadly be defined as a subjective

probability of a good outcome. Probability is used in a

technical sense, to mean the full range from the

‘possible’ to the ‘very likely’. Subjective probability is a

mental state ‘in which the probability of an event, as

judged by any given individual, is a statement of that

person’s degree of belief in the occurrence of that event’

(Heap, Hollis, Lyons, Sugden, & Weale, 1994, p. 46).

Hope, therefore, is a kind of belief state. The belief is in

the level of probability of good outcome. ‘Good’ refers

to a subjective judgement of benefit for oneself, a loved

other or others in a context and at a particular time, and

hope can thus also be regarded as an emotion

(Nussbaum, 2001). The judgement of what is good

may vary during the course of an experience. We will say

more about this in the context of illness. Hope is

narratively constructed (Mattingly, 1998, p. 70) and

future oriented (Mattingly, 1998, p. 73).

Certainty is not an object of hope. Hope implies a

degree of uncertainty. Thus, someone who ‘knows’ that

he or she will be cured of cancer is not hopeful of cure,

but certain of it. Others observing the person with

cancer may have various levels of hope about cure, but

be far from certain. Therefore, levels of hope may vary

widely within a community of people involved in the

extreme experience of one or more members of the

community. Hope is a continuum, not dichotomous.

When we talk about not giving up hope we are talking

about maintaining (or raising) a level of subjective

probability, rather than shifting it downward.

Hope exists in social contexts. Hope is comforting. In

the context of extreme experience, there is a subject who

feels a particular level of hope, and observers whose

hope levels may differ. Differences in level of hope can

cause interpersonal judgements to be made and com-

munications to become strained. Observers may make

the kinds of negative judgements of ill people that

Lupton refers to if ill people ‘despair’ or ‘lose hope’.

Hope is ‘unrealistic’ when someone enters a particular

state of belief that clashes with the subjective probabil-

ities of others. When there is a conflict between beliefs,

there may be no resolution because beliefs are at stake.

‘True’ belief can only be confirmed by outcome and in

retrospect. Hope is—technically—always irrealis in the

linguistic sense of something which is non-actual or non-

factual.

Sources of data

The methodology used in this paper is similar to that

reported earlier by the authors (Little & Sayers, 2003).

We have derived the data for this paper from four

main sources:

1. Extended narrative interviews with 15 survivors of

large bowl, liver and breast cancer, Hodgkins

lymphoma and leukaemia. The methodology of these

interviews and their analysis has been published

elsewhere (Little, Jordens, Paul, Montgomery, &

Philipson, 1998; Little, Jordens, Paul, Sayers, &

Sriskandarajan, 1999, 2000; Little, Jordens, Paul, &

Sayers, 2001, 2002; Little, Paul, Jordens, Sayers,

2000; Jordens, Little, Paul, & Sayers, 2001). Inter-

viewees were recruited by personal reference from

clinicians and other cancer survivors. Each was

invited to participate in a narrative interview, as part

of a research project examining the experience of

cancer. The interviews were conducted as open-ended

conversations between subject and interviewer. The

opening prompt was ‘‘Tell me the story of your

illness.’’ Few prompts were used thereafter, the

narrator being allowed to develop his or her own

topics. Prompts were mainly used as means of

keeping the conversation going. Question sheets were

not used, so that the great bulk of the transcripts

record uninterrupted narratives.

2. Similar interviews with three people who were

partners and carers of cancer survivors.

3. Published accounts of survival of bone marrow

transplantation for leukaemia (Miles, 1995, 1997,

2000; Handler 1996).

4. Anatole Broyard’s (1992) detailed account of his

experience of dying from prostate cancer.

We have read this material for instances of expres-

sions of hope in its many variations. In doing so, we

have used Grounded Theory (Strauss, 1987; Strauss &

Corbin, 1990), and methods of narrative analysis, both

familiar (Kleinman, 1981, 1988; Hawkins, 1993; Mish-

ler, 1995, 1996; Mattingly, 1998) and novel (Jordens

et al., 2001). We have followed the classical pattern of

Grounded Theory, using a process of background

reading, preliminary theorisation, weekly meeting,

memo generation and exchange, re-theorisation, re-

reading, consensus, formulation and publication. We

have conducted workshops in most states in Australia

presenting the material and seeking systematic, struc-

tured feed-back and evaluation. Feed-back has been

incorporated into reviews of theory.

We have also examined the records of 50 people,

treated by one of the authors (M.L.), apparently cured

of abdominal cancers and alive for at least 2 years after

treatment, for evidence of the kinds of distress we have

reported elsewhere. Post-cancer distress requiring spe-

cific support was present in 16 of the 50 (32%, 95%

confidence intervals 21–45%). We certainly do not

believe that the problems we report in this paper affect

all survivors.

ARTICLE IN PRESSM. Little, E.-J. Sayers / Social Science & Medicine 59 (2004) 1329–1337 1331

Extreme experience

There is inevitably a difference between those who

observe and those who participate in mortal extreme

experience, the experience which threatens life. Partici-

pants are aware that their lives are actually at risk.

Observers know that a life is at risk, but not their life.

Nevertheless, observing the suffering of another is

disturbing. Terror Management Theory concludes that

observers are made mortality salient—that is, uncom-

fortably aware of mortality as the common and

inevitable fate of humankind (Pyszczynski, Greenberg,

Solomon, & Hamilton, 1990; Solomon, Greenberg, &

Pyszczynski, 1991; Arndt, Greenberg, Simon, Pyszc-

zynski, & Solomon, 1998; Solomon, Greenberg, &

Pyszczynski, 2000; Greenberg, Arndt, Schimel, Pyszc-

zynski, & Solomon, 2001; Strachan, Pyszczynski, Green-

berg, & Solomon, 2001). Mortality salience seeks relief

in acts of bonding with one’s in-group, looking for

confirmation of personal values and evidence that those

values will persist beyond one’s own death. It is, in

effect, an outward turning to others for reassurance and

bonding.

There is another kind of extreme experience in which

the threat is to identity, rather than life (Little et al.,

2001, pp. 94–105). Situations such as prisons, concen-

tration camps, hostile occupation of a country, systema-

tic discrimination and torture all rob people of

autonomy, alter their relationships with communities

of support, reduce or remove any sense of security and

the capacity for human flourishing. This might be called

identity extreme experience. The two forms of extreme

experience are closely related. Those enduring the

mortal kind face challenges to identity. Reynard, a

retired medical practitioner, treated by stem cell

transplant for acute leukaemia, says:

I had four central lines, and I had two bouts of

septicaemia, I lost every hair on my body, and it is,

the part of it that was really hard was the, the fact

that you lose your identity. Because even when I was

at the hospital, and I would go down in the lift and

up in the lift, and I would meet some of my

colleagues after and had to introduce myself. People

I had known for twenty or thirty yearsy

Those enduring the identity kind frequently question

whether death might be a better alternative: suicide

among prisoners is relatively common. While recognis-

ing this nexus, we will deal predominantly with mortal

extreme experience in this paper.

To be the participant in a mortal extreme experience is

to be confronting dying with hope. That is, the subjective

probability of dying is less than 1. As the course of the

experience is run, bifurcations in the course appear and

the participant moves closer to or further away from the

path to his or her own death. At each bifurcation, the

subjective probability of death changes towards or away

from 1. This is mortal extremity salience. Samantha

Miles reflects on an episode which made her aware of the

reality of dying as she is treated for acute leukaemia. In

her book Topic of Cancer, she writes

One afternoon, as my mother read in the armchair

and I lay across my bed writing a letter and spitting

into my plastic bowl, the telephone rang. It was my

friend Catherine.

‘Bruce Bell is dead,’ she said.

I was shocked into silence.

‘He went into a coma a few nights ago and never

recovered.’ Catherine paused. ‘Man, are you still

there?’

‘Yeah,’ I managed.

She went on talking but I wasn’t listening. I felt

frozen. I had never ad to cope with somebody I knew

dying before. Especially someone like Bruce, some-

one like me.

‘What’s the matter?’ my mother asked when I’d

hung up.

‘Bruce is dead.’

‘Oh, no,’ she exclaimed. ‘Oh my God.’

I was silent. I couldn’t quite work out what I felt. I

think I was mostly petrified. If it could happen to

Brucey

(Miles, 1995 p. 267)

Anna was 13 when her liver cancer was diagnosed. In

her spoken narrative, she says:

There were times there after the first operation and

the first lot of chemo when I had no idea what this

chemo was going to do to me, and what it had done

to me, there was just no way that I was going back to

that hospital. And I remember saying ‘I am not

going, I am not going’, and mum was like, well ‘Let’s

go and buy you a coffin then, because that’s what it’s

going to be’, and then that is the first time that I

thought ‘Hang on a minute, this is pretty serious, I

have got to go back’, but every other time, like she

was just so positive that I never thought that wasn’t

going to work.

Bert was in his late sixties when he underwent surgery

for colon cancer, which left him with a colostomy. The

deaths of others made him aware that his own death was

possible:

Well I suppose in a sense you were helpful to each

other [in the hospital ward], you know, in there with

a common bond. And unfortunately while I was

there two people died. But uh apparently their’s was

found a bit late. And um, so I believe. And that’s a

bit traumatic (nervous laugh). Well they do it very


discreetly of course, but you have, you know, a ward,

an area where there are pretty sick people.

Helen reports her reaction to a common event in

hospital wards:

So as soon as I kind of arrived at the hospital the

priest came in and I thought: ‘Oh shit, this is it.’ You

know what I mean?

She also records a common response to a cancer

diagnosis:

I suppose when I heard about it I thought—you

think of cancer, death. I mean you just think of

dying, you don’t think of the people that recover.

Lynn remembers waiting in the operating suite for the

anesthetist and surgeon to arrive:

I thought: ‘This is it. I could die’. But I wasn’t scared

of that. Like I wasn’t scared of dying, because I have

got that hope, you know, afterwards. But I thought:

‘Yeah well this could be it for me. I could be going

to die’.

Mark accepts that he may have a price to pay because

he have a permanent colostomy, but asks the surgeon to

save his life, whatever the cost:

He [Mark’s surgeon] says: ‘You are going to get two

options. You either keep your bowel, keep the rest of

your bowel, or the whole lot’s gotta go, and you’ll

have a bag for the rest of your life’. And I said: ‘Well

whatever the case may be as long as you keep me

alive’.

In each of these quotes, the possibility of death is

entertained, but not its certainty. Only in K .ubler–Ross’s

phase of acceptance during dying does the subjective

probability of death reach 1, or asymptotically close to

1. At that stage, the mortal extreme experience moves

into the salience of dying (dying salience) (Little &

Sayers, in press). Nuland writes about this transition

from extremity to dying salience (Nuland, 1997, pp.

222–262), as he observes it in his brother and his friend

Robert DeMatteis during their terminal illnesses. Dying

salience is the developing awareness that this experience

is the experience of dying, an experience that will

culminate in personal death and extinction, a ‘demotion

down the evolutionary scale into nothingness’, as

Broyard writes in Intoxicated by My Illness (Broyard,

1992, p. 91):

There is sudden pathos. I had seemed to friends and

acquaintances to be good for another twenty years.

They found a dying Anatole easier to like, more

interesting. I have become a ghost who is at the same

time more real than they are. I have lost my

remorselessness. I find it difficult to be serious, to

give up a lifetime of irony.

(Broyard, 1992, p. 68)

Death salience

Death salience is the reflective awareness in a survivor

that a mortal extreme experience could have led the

subject down a fork in the road of serious illness to

death and personal extinction (Little & Sayers, 2003). It

is an inability to deny the reality of personal death by a

person who has life. It is also a confrontation with

meaning in a life, a recognition that ‘Any meaningy is

better than none’ (Broyard, 1992, p. 65). It implicitly

raises the reality that the whole process will have to be

lived through again and perhaps again, but that at some

time death will be the outcome. Anna, finishing her

chemotherapy for liver cancer before her surgery,

remembers the moment when her own possible death

becomes an overpowering reality:

When I had my last treatment, I asked Prof K, what

would have happened, you know, how long would I

have had if the chemo hadn’t done anything, and he

said, ‘Well you probably would have given you two

months’. And I kind of just, well I didn’t really know

that it was that serious, kind of, you know, and I

don’t know looking back whether that would have

been a good thing to tell a thirteen year old. I don’t

think, I think it is dependent on the age and the

mental stability, as well of the patient whether the

patient is coping with the actual fact that they have

their illness, it’s really touchy ground to decide

whether you know.

Reynard, 2 years after successful stem cell transplan-

tation, wonders where he stands now in relation to his

own death, asking

Am I now in God’s antechamber?

Danny, an actor apparently cured of bowel cancer,

and 3 years after treatment, recalls the time when the

reality of his confrontation with death makes its impact

in the second year after treatment:

I thought it would change my life, I was thinking it

was going to be like this forever now, you know, I

have had my major crisis, and I have realised you

know what the meaning of life type of thing, and then

you know, I wanted to have um, you know a negative

thought again you know, or, or you know a

depressive moment y And so that is what I am, I

think I got back to the, I haven’t changed. That was

the first thought, ‘Oh, I am still the same’ you know

to what I was. And then, and then I thought, and I

thought, I remember, I remember fighting them off

and not being able to say anything to anyone for


quite a while, like probably a few months of, of

saying ‘Well, you—no, I cant’, and I, ‘cause I have

had you know this life experience, I have had this,

you know this amazing thing, a glimpse at death sort

of thing. And ah, I should be lucky that I am alive,

you know, and, and that, and that, not have to,

’cause I suppose in thinking about sort of life and

death terms I thought it was always sort of um you

know flirting with death and thinking you know that

um, you know questioning death, and you know sort

of investigating death in that sort of artistic way, but

also emotional way and what it means and stuff, but

having this, made me think that I would never you

know, um, not that I am talking about suicide or

anything like that. It is just that sort, that sort of um,

‘‘What is the point’’

Death salience—at least for younger people—takes

reflective time to develop. For both Reynard and

Danny, the realisation has taken about 2 years from

the end of treatment. During the mortal extreme

experience itself, the experience and the associated

(often suppressed) fear of death dominate. Relief, even

euphoria, at having survived characterises the post-crisis

phase. It takes a year or more for cancer survivors to

enter the phase of death salience. Even then, only about

30% are significantly affected by distress, and only a

small minority are explicit about their awareness of

challenges to meaning caused by the reality of their own

deaths (Little & Sayers, 2003). The rest become involved

in projects of restitution (return to the valued order that

prevailed before the illness) or heroic development

(expansion of the life lived before illness into new,

desirable and admirable projects) (Frank, 1995). Never-

theless, awareness of death is commonly expressed

indirectly. Ben, who has chosen a life of both restitution

and development and who rejects the idea that he feels

labelled by his cancer, still finds it difficult to name

cancer or death, or to explain his desire to avoid both:

Um and well I think: ‘Life’s for living’. You don’t

know whether something might come along and you

don’t even know—quite apart from that one [in-

dicates his lower abdomen] it [i.e. cancer] could start

up again totally unconnected with that one. And I

have got that in my head as a theoretical possibility.

And, um, I think: ‘Well that’s just unfortunate’ and,

er, not because I haven’t done anything to stop it.

But you have taken every possible precaution you

can. And uh so I continue y

Part of the distress may depend on recognising that, in

mortal extreme experience, hope is fragile and its end is

insecure. We hope to survive now—but in order to face

death again at some time. Hope is directed at the future,

but when the future has arrived and the hope is fulfilled,

another future will contain the end of hope. This is the

existentialist dilemma, which Helen and Jean express

with their accounts of lives troubled by the fear of cancer

recurrence:

Helen: I think if it came back, I wouldn’t cope as well

as I did the first time ’cause I think it would come

back as a secondary, which would be worse, and y

you know what I mean?

Jean: ‘Cause I think if I get a pain now: ‘Where is

it? Is it there? Or is it there?’ you know but that’s the

only thing that is worrying me now. If they hadn’t of

told me that I’d have been right. I would have

forgotten all about it. (Chuckles)

The objects and discourses of hope

Hope changes its object during the course of mortal

extreme experience. In cancer illness, for example, the

phase of mortal extremity salience is characterised by the

hope that life will continue. If the course moves into that

of terminal illness, hope moves its object to ‘good death’,

which usually includes hope for the formulation of

meaning for the life that is ending. Broyard, dying of

prostate cancer, pleads for understanding that might

give a context and meaning to his dying:

What a critically ill person needs above all is to be

understood. Dying is a misunderstanding you have to

get straightened out before you go. And you can’t be

understood, your situation can’t be appreciated, until

your family and friends, staring at you with an

embarrassed love, know—with an intimate, absolute

knowledge—what your illness is like.

(Broyard, 1992, p. 67)

If a cure seems to have been achieved, the hope for life

has been realised, and hope turns to expansion of the

meaning of a life, to the finding of self-realisation and

expression. There are thus two scales along which hope

can be measured at different times in the cancer journey,

and two discourses in which they can be narrated. Hope

discourse 1 is the discourse of life and death. Hope

discourse 2 is the discourse of meaning in a life. Ben,

recovered from bowel cancer, reflects in his narrative on

the experiences that have given meaning to his life, even

if ‘something did happen now’:

I suppose I will either rationalise or put it into a total

picture. I mean I have lived overseas for ten years. I

have travelled a lot and I’ve enjoyed what I have

done, and um and I sort of think back. I did actually

think: ‘Even if something did happen now or then,

um, well I have done already a great number of

things which have contributed to the quality of my

life’, and in some ways I would have been able to

rationalise it in that way (laughs). It wouldn’t have


meant you wouldn’t have regretted it or have been

sorry about it, but um but I could have seen it a bit in

those terms. Yes, yes. So actually I have got a very

positive sort of view point about it.

Helen finds meaning in everyday things because of her

cancer experience:

I think you appreciate the little things in life, um, that

you just take for granted y I mean I was up at

church and I was talking to a lady that’s dying of

cancer, and she said she just still likes to do the

dishes, and just the simple things in life like that—

Uh, you think you appreciate them.

Observer–participant relationships

Observers find it hard to understand when the object

of hope for a survivor changes from life to meaning.

During the illness, participant and observers are united

by the hope they have for achieving life and avoiding

death. Family members may become aware of death for

the first time, as Reynard records

But ah, in my case, it has been a treble whammy if

you like, I mean, my, my family have, have been

knocked for six, because of it. Because you know I

was always out there and backing them up and all

that sort of stuff, and then suddenly from one day to

the next, even my daughter who had been roving the

world said, you know she suddenly confronted her

own mortality.

During illness, observer and participant develop an

extraordinary relationship, and may say things to one

another they would not say under ‘normal’ circum-

stances. Observers offer love and admiration both

because they want to offer support, but also because

they fear that the participant is going to die. Some

observers feel impelled to make statements that reassure

the dying person that they have mattered and continue

to matter, while participants may venture into difficult

territory in order to confirm relationships and express

fears. Lynn records a conversation with her youngest

daughter:

She’s my youngest, and um, yeah, and I said: ‘‘I

could die, darling’’. And she said: ‘‘I knowwwww’’,

you know. The others didn’t show the same—but

they’re morey they are different. My younger one is

very y You know that she loves you because she

tells you. I know the others love me, but they

wouldn’t be able to say it you know. They ‘re all

different, aren’t they?

When the hope of life is realised, and it seems that

cure has been achieved, observers understandably seek a

return to ‘normal’. They may turn their hopes to

restoration of old relationships, to resolution of tensions

provoked by illness, and to their own needs and past

sacrifices made during the illness. They often want to put

aside the things said in loving support during the illness,

to get on with the remembered, familiar relationship.

They may even feel embarrassed, and as though the

recovered person has some hold over them because of

the things said. Evan Handler writes of the transition

from illness to recovery, and the penalties of spoken

commitment under extraordinary circumstances:

I am familiar with the emotional retreat that can

follow an episode of revealing too much; of promis-

ing more than can be delivered; of pledging a love too

large. When Jackie and I found ourselves spared the

brutality of a separation imposed by premature

death, what we discovered instead was the shame of

realizing we meant many of the things we’d said only

within a context in which they were inherently

impossible. The embarrassment suffered privately

then fermented into a resentment of the person whose

presence aroused it. And the prospect of living

happily ever after was not enhanced, but made to

seem ludicrous.

(Handler, 1996, p. 236)

If the ‘cured’ survivor seeks to meet the hope of

increasing the meaning of his or her life, it may seem like

rejection or selfishness to observers. In other words, the

survivor may pass from Hope discourse 1 to Hope

discourse 2, while the observers hope to move to

a discourse of normality (which we might call Hope

discourse 3). Lynn records that her husband seems to

want to play down the magnitude of Lynn’s cancer

experience, to normalise it:

And my husband says to me: [mocking, sing-song

tone] ‘You don’t know what life is all about’. And I

think: ‘How come he can say that to me when I have

had some of the experience?’ I said: ‘I don’t believe

I’ve had anything worse than most people, but I do

know what it is about. I have experienced some

things that some people will never have.’

Death salience and the deep self

Death salience breaches the barrier that normally

exists between the social self and the deep self, forcing an

unaccustomed encounter with the realities of the deep

self (Little & Sayers, in press). Handler describes the

experience of seeing into the depths of the self:

y I’m always aware of a little doorway that exists

down near the floor of my consciousness y when I

do open the door and bend down to its level, I feel


like Alice after she passed through the looking glass

y It’s the land I inhabited when all I craved was a

day free of painy Those are the moments of my life

y The quickest way—sometimes the only way—to

conjure one of those moments, is to have a brush

with death.

(Handler, 1996)

Danny struggles with similar insights into deeply held

values that are hard to articulate:

So getting back in there, there is some sort of, some

sort of um blockage, some sort of you know trap

door or something that you, I can’t get into, so that is

why I feel I am sort of stumped about talking about

it, and maybe, huh, maybe there is that thing of, um

of um wanting to tell it in a, in a particular way or

something, I don’t knowy So (clearing throat), and

then, and also, the thing, in that period of when you

are told that you might not, you know that you might

not have long to live or you know, there was a real

sort of um, um a love of life, but not of any, of

anything that was living, you know, anything that

was, nothing else mattered except, I mean the things

that mattered were the leaves that were being blown

around by the wind you know, the the smell of

flowers or you know, my children and the things of

nature, the things that actually give life and are of the

natural sort of form, nothing that sort of that is

organised about life and that sort of stuff made any

sort of point you know.

Handler wonders whether mere existence may, for

some people, carry the meaning of their lives:

It started to dawn on me that the living of my life had

been my artistic expression for years already, and

that perhaps I was doomed and blessed to have

become one of those people whose mere existence

makes a greater statement than anything they might

ever do with it.

(Handler, 1996, p. 242)

These encounters with meaning challenge the survivor

to find a new balance between social and deep selves, in

order to restore the lost order and regain a sense of well

being.

Discrepancy theory and well-being

During the process of uncovering the deep self,

however, a survivor may become aware of discrepancies

and tensions between her models of the person she wants

to become (ideal self), the person she feels she ought to

become (ought self), and the person she actually is

(actual self). These discrepancies are the basis of

Discrepancy Theory (Higgins, Bond, Klein, & Strau-

man, 1986; Higgins, 1987). The experience of discre-

pancies between ideal, ought and actual selves may

cause a drastic loss of the sense of well-being, and to self-

censoring. ‘Survivor guilt’, for cancer survivors, often

reflects a sense of unfulfilled desires and expectations.

Danny clearly expresses the guilt that follows a

recognition that desires, expectations and actuality are

out of kilter:

Well I feel like it is, I feel like it is a weakness or you

know, a thing that I should be able to control, be, be

in charge of, my moods and be able to rise above

them, you know, and just go ahead and do what I

have to do, you know

Mending damaged well-being involves finding new

ways to realise and express oneself socially and

personally. Ryan and Deci (2001) believe that this

process involves the achievement of

* a degree of autonomy,* a sense of social and personal competence, and* awareness of an ability to enter and enjoy satisfying

personal relationships.

The sense of well-being is created and sustained within

hedonic or eudaimonic paradigms (Ryan & Deci, 2001).

Hedonic paradigms emphasise pleasure—such as travel,

company, recreations, entertainment. Eudaimonic para-

digms stress self-improvement—education, new skills,

spiritual and aesthetic development, service to others,

and the like. The two are closely linked. Many people

gain pleasure from self-development. Some kinds of

pleasure-taking (art, film, music, travel) enlarge the soul.

Predominantly eudaimonic patterns, however, are more

demanding for others to deal with. Someone whose hope

for the future is based on self-development and service

acts as a reminder to observers of their own potential

inadequacies and of their duties toward themselves and

others.

The varied discourses of hope

We can now see that the emotion of hope, for both

participants and observers, focuses on different objec-

tives, and is expressed in different discourses, as the

course of a mortal extreme experience unfolds. The

illness phase, for both groups, is dominated by a

discourse of hope for life over death, because all those

involved in the experience want the participant to get

better, to recover, to be saved. For the participant, the

suffering of illness resembles the experience of dying—at

least the early stages of dying. The participant therefore

experiences dying salience with a level of hope.

If ‘cure’ is not the outcome, and the participant

accepts that he is now dying, his hope and his discourse


change their objective to good death, a death which

confirms meaning in the dwindling life, with symptoms

controlled, dignity preserved, worth recognised and

important relationships confirmed.

If ‘cure’ is the outcome, the survivor is likely to feel

euphoric for some time—perhaps a year or more. The

objective of hope is that the heightened appreciation of

life will persist, the sense of gratitude and good fortune

will sustain a new and enhanced life. Survivors thus,

early in survival, may use a discourse of enhancement.

Since this is a positive discourse, it is generally approved

socially. It is life-enhancing, and reassuring to those

close to the survivor.

As the euphoric phase passes, survivors are challenged

to refashion their lives in the long term. Very broadly,

three discourses seem to be available. The first is the

discourse of restitution, the narrative of return to

‘normality’, to the person who existed before the illness

(Frank, 1995). The second is the discourse of Heroism,

the narrative of heroic re-creation as a better, stronger,

more aware person. Those who follow this course tell

the narrative Frank (1995) characterises as the Heroic

Quest. Both these discourses are generally socially

approved, because they are comforting and reassuring

to those close to the survivor. They deny the reality of

death, and therefore help to keep mortality salience

at bay among observers. Our own studies suggest

that about 10% of survivors adopt the discourse of

Heroism, and about 60% adopt the discourse of

restitution.

That leaves about 30%, whose discourse is that of

sought meaning. These are the survivors who tell what

Jordens and colleagues have characterised as ‘hard-

working’ narratives (Jordens et al., 2001). These stories

use many linguistic genera, mixing true narrative,

anecdote, recount, exempla and observations to express

the complexity of the lives they reflect. They are complex

accounts of complex experiences. They work hard to

generate and capture meaning in disrupted lives. They

can be interpreted as creating meaning, as it were ‘on-

line’. Their complexity, the frequency with which they

stop and start or take new directions, reflects the

difficulty of constructing meaning, and expressing in

narrative the work of meaning under construction.

Frank (1995) refers to this kind of narrative as the

Chaos narrative. His term captures the effect that such a

narrative may have on an interlocutor. We prefer to

think of them as hard-working narratives, since there is a

purposeful structure underlying the apparent chaos, and

the purpose is the creation of meaning. In other words,

hope at this stage is turned toward the creation and

capture of meaning.

While observers develop these modes of discourse to

express and realise their hopes, observers also have their

own hopes and discourses. They turn toward a hope for

normality, and develop a discourse of normality which

records the hope that the participant will ‘get over it’,

‘move on’ and ‘get back to normal’.

It might help to make mortal extreme experience and

its aftermath more comprehensible if we could simply

accept that the mobility of hope determines varying

discourses that may clash in serious ways. During illness,

the bonding effect of illness is likely to make the

discourse among observers and between observers and

participants more monoglossic, to use Bakhtin’s (1981)

concept. But after ‘cure’, the ways may part. Discourses

of sought meaning may clash with discourses of

normality, in particular. A significant number of cancer

survivors (about 30%) will experience post-cancer

distress, and their discourse of sought meaning may

cause almost as much distress in observers committed to

a discourse of normality. We need to understand, if we

are to understand the evolution of inter-linked lives after

an experience like cancer, that people change their

membership of discourse communities (Little, Jordens,

& Sayers, 2003) as their hopes move from one object to

another.

We believe that our conclusions may be applicable to

other kinds of extreme experience than cancer. Re-

sponses to television and radio programs support this

belief. We have, however, so far worked only with

cancer survivors, and are reluctant to make claims

outside our research domain.

Acknowledgements

This work was supported by grants from the Thyne

Reid Trust No. 1 (Education), the late Mrs. Caroline

Simpson and Mrs. Clare Sayers.

References

Agich, G. J. (1993). Autonomy and long-term care. Oxford:

Oxford University Press.

Arndt, J., Greenberg, J., Simon, L., Pyszczynski, T., &

Solomon, S. (1998). Terror management and self-awareness:

Evidence that mortality salience provokes avoidance of the

self-focussed state. Personality and Social Psychology

Bulletin, 24(11), 1216–1227.

Bakhtin, M. M. (1981). The dialogic imagination. Austin:

University of Texas Press.

Bresnahan, J. F., & Merrill, J. M. (1999). Religious/spiritual

concerns in caring for the cancer patient. In P. Angelos

(Ed.), Ethical issues in cancer patient care (pp. 39–48).

Dordrecht: Kluwer Academic Publishers Group.

Broyard, A. (1992). Intoxicated by my illness. New york:

Fawcett Columbine.

Frank, A. W. (1995). The wounded storyteller: Body, illness, and

ethics. Chicago: Chicago University Press.

Greenberg, J., Arndt, J., Schimel, J., Pyszczynski, T., &

Solomon, S. (2001). Clarifying the function of mortality


salience-induced worldview defense: Renewed suppression

or reduced accessibility of death-related thoughts? Journal

of Experimental Social Psychology, 37(1), 70–76.

Handler, E. (1996). Time on fire: My comedy of terrors. New

York: Owl Books.

Hawkins, A. H. (1993). Reconstructing illness: Studies in

pathography. West Lafayette, Indiana: Purdue University

Press.

Heap, S. H., Hollis, M., Lyons, B., Sugden, R., & Weale, A.

(1994). The theory of choice: A critical guide. Oxford:

Blackwell.

Higgins, E. T. (1987). Self-discrepancy: A theory relating self

and affect. Psychological Review, 94, 319–340.

Higgins, E. T., Bond, R. N., Klein, R., & Strauman, T. (1986).

Self-discrepancies and emotional vulnerability: How mag-

nitude, accessibility, and type of discrepancy influence

affect. Journal of Personality and Social Psychology, 51,

5–15.

Jordens, C. F. C., Little, M., Paul, K., & Sayers, E.-J. (2001).

Life disruption and generic complexity: A social linguistic

analysis of narratives of cancer illness. Social Science &

Medicine, 53(9), 1227–1236.

Kleinman, A. (1981). Patients and healers in the context of

culture—an exploration of the borderland between anthro-

pology, medicine and psychiatry. Los Angeles: University of

California Press.

Kleinman, A. (1988). The illness narratives—suffering, healing

and the human condition. USA: Basic Books.

Little, M., Jordens, C. F. C., Paul, K., Montgomery, K., &

Philipson, B. (1998). Liminality: A major category of the

experience of cancer illness. Social Science & Medicine,

47(10), 1485–1494.

Little, M., Jordens, C. F. C., Paul, K., & Sayers, E.-J. (2001).

Surviving survival: Life after cancer. Marrickville: Choice

Books.

Little, M., Jordens, C. F. C., Paul, K., & Sayers, E.-J. (2002).

Survivorship and discourses of identity. Psycho-oncology,

11(2), 170–178.

Little, M., Jordens, C. F. C., Paul, K., Sayers, E.-J., &

Sriskandarajah, D. (1999). Approval and disapproval in the

narratives of patients with colorectal cancer and their carers.

Health, 3(4), 451–467.

Little, M., Jordens, C. F. C., Paul, K., Sayers, E.-J., &

Sriskandarajah, D. (2000). Face, honor and dignity in the

context of colon cancer. Journal of Medical Humanities,

21(4), 229–243.

Little, M., Jordens, C. F. C., & Sayers, E.-J. (2003). Discourse

communities and the discourse of experience. Health, 7(1),

73–86.

Little, M., Paul, K., Jordens, C. F. C., & Sayers, E.-J. (2000).

Vulnerability in the narratives of patients and their

carers—studies of colorectal cancer. Health, 4(4), 499–514.

Little, M., & Sayers, E.-J. (in press). The skull beneath the skin:

Cancer survival and awareness of death. Psycho-oncology.

Lupton, D. (1994). Medicine as culture: Illness, disease and the

body in western societies. London: SAGE Publications.

Mattingly, C. (1998). Healing dramas and clinical plots: The

narrative structure of experience. Cambridge: Cambridge

University Press.

Miles, S. (1995). At least it’s not contagious—a personal story of

a struggle with leukaemia. St. Leonards, Sydney: Allen &

Unwin.

Miles, S. (1997). A most recidivist remedy. Agenda: Official

newsletter of cancer and the young adult, Vol. 55, 4–7,

March/April.

Miles, S. (2000). Topic of cancer. Sydney morning herald.

Sydney, Australia, 29 January p. 32.

Mishler, E. G. (1995). Models of narrative analysis: A typology.

Journal of Narrative and Life History, 5(2), 87–123.

Mishler, E. G. (1996). Research interviewing: context and

narrative. Cambridge, MA: Harvard University Press.

Nuland, S. B. (1997). How we die. London: Vintage Books.

Nussbaum, M. (2001). Upheavals of thought: the intelligence of

emotions. Cambridge: Cambridge University Press.

Pyszczynski, T., Greenberg, J., Solomon, S., & Hamilton, J.

(1990). A terror management analysis of self-awareness and

anxiety: The hierarchy of terror. Anxiety Research, 2(3),

177–195.

Ryan, R. M., & Deci, E. L. (2001). On happiness and human

potentials: A review of research on hedonic and eudaimonic

well-being. Annual Review of Psychology, 52, 141–166.

Solomon, S., Greenberg, J., & Pyszczynski, T. (1991). Terror

management theory of self-esteem. In C. R. Snyder, & D.

Forsyth (Eds.), Handbook of social and clinical psychology:

The health perspective (pp. 21–40). New York: Pergamon.

Solomon, S., Greenberg, J., & Pyszczynski, T. (2000). Pride and

prejudice: Fear of death and social behavior. Current

Directions in Psychological Science, 9(6), 200–204.

Strachan, E., Pyszczynski, T., Greenberg, J., & Solomon, S.

(2001). Coping with the inevitability of death: Terror

management and mismanagement. In C. R. Snyder

(Ed.), Coping with stress: Effective people and processes

(pp. 114–136). New York: Oxford University Press.

Strauss, A. L. (1987). Qualitative analysis for social scientists.

Cambridge: Cambridge University Press.

Strauss, A., & Corbin, J. (1990). Basics of qualitative research:

Grounded theory procedures and techniques. Newbury Park,

CA: Sage.

While there's life …: hope and the experience of cancer

Documents

Transcript of While there's life …: hope and the experience of cancer