Qualitative Health Research

Volume 17 Number 6
July 2007 759-771

Remapping the Body: Learning to Eat Again © 2007 Sage Publications

10.1177/1049732307302021
http://qhr.sagepub.com
After Surgery for Esophageal Cancer hosted at
http://online.sagepub.com

David Wainwright
University of Bath, United Kingdom
Jenny L. Donovan
University of Bristol, United Kingdom
Vas Kavadas
Bristol Royal Infirmary, United Kingdom
Helen Cramer
University of Bristol, United Kingdom
Jane M. Blazeby
University of Bristol and Bristol Royal Infirmary, United Kingdom

Surgery for esophageal cancer offers the hope of cure but might impair quality of life. The operation removes tumors
obstructing the esophagus but frequently leaves patients with eating difficulties, leading to weight loss. Maintaining or
increasing body weight is important to many patients, both as a means of returning to “normal” and as a means of reject-
ing the identity of the terminal cancer patient, but surgery radically alters embodied sensations of hunger, satiety, swal-
lowing, taste, and smell, rendering the previously taken-for-granted experience of eating unfamiliar and alien. Successful
recovery depends on patients’ learning how to eat again. This entails familiarization with physiological changes but also
coming to terms with the social consequences of spoiled identity. The authors report findings from in-depth interviews
with 11 esophageal cancer patients, documenting their experiences as they struggle to achieve a process of adaptation
that is at once physiological, psychological, and social.

Keywords: cancer; rehabilitation; eating disorder; esophagectomy

E sophageal cancer is the ninth commonest malig-

nancy in men in the United Kingdom (National
Statistics, 2005) and the fifth most common worldwide
(Parkin, Pisani, & Ferlay, 1999). It disseminates early,
so many patients present with advanced disease and a
poor prognosis. About 30% are considered for poten-
tially curative treatment, and surgery generally offers
the best chance of survival (Hulscher, Van Sandick,
Offerhaus, et al, 2001; Muller, Erasmi, Stelzner,
Zieren, & Pichlmaier, 1990). Five-year survival after
surgery alone is about 20%, although this might be
improved with preoperative chemotherapy (Bosset,
Mercier, Triboulet, Conroy, & Seitz, 2002; Hulscher,
Van Sandick, de Boer, et al., 2002). Although
esophagectomy offers a hope of cure, it is associated
with in-hospital mortality rates of 5 to 10% and a
major morbidity rate of 40% (Bosset et al., 2002).
Recovery to preoperative health status takes between
3 to 9 months, and during the first postoperative year
about 30% of patients develop recurrent disease that is
difficult to treat, (Blazeby, Farndon, Donovan, &
Alderson, 2000). Prospective studies demonstrate that
esophagectomy has a major negative impact on most
aspects of quality of life during the first postoperative
year, (Blazeby et al., 2000; Brooks, Kesler, Johnson,
Ciaccia, & Brown, 2002; Zieren, Jacobi, Zieren, &
Muller, 1996). Decrements in physical, role, and social
function as well as problems with fatigue, dyspnea, and
appetite loss are common. Eating disorders frequently
lead to poor body image and cause anxiety for the
patient and family.
The extent to which loss of appetite and body weight
result from the progress of disease (cancer cachexia), the
Authors’ Note: We thank Professor D. Alderson, Mr. C. P. Barham,
and Mr. J. Vickers for allowing us to study patients under their care.
We also thank Professor Morse and an anonymous reviewer for their
comments on an earlier draft.

759

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760 Qualitative Health Research
physiological changes that result from surgery (iatroge-
nesis), or psychosocial factors is poorly understood, and
the three factors might be linked (Van Knippenberg
et al., 1992). Before surgery, cancer cachexia coupled
with difficulty swallowing caused by obstruction of
the esophagus is likely to contribute to weight loss.
However, surgery removes obstructive tumors from the
esophagus and at least temporarily arrests the progress
of the disease, making cachexia an unlikely cause of
weight loss in the immediate postoperative period.
Iatrogenesis is a more likely cause, with the immediate
after-effects of surgery, inflammation (catabolism), for-
mation of scar tissue, and physical pain interfering with
food consumption. Radiotherapy and chemotherapy
might also suppress appetite, but the patients in this
study who had undergone these treatments completed
them well before surgery, so it is unlikely that their loss
of appetite is attributable to this.
Finally, it might be that the eating difficulties encoun-
tered by esophagectomy patients have a psychosocial
component. Serious illness and its treatment do not only
affect the body; they also cause biographical disruption
(Bury, 1982), reconfiguring established social relations
and patterns of behavior and changing the patient’s self-
identity. Following treatment, the patient must come to
terms with these changes and reflexively repair the dam-
age to the social self, (G. Williams, 1984). There is no
absolute dichotomy between physiological and social
“repair work.” Physiological changes affect social func-
tioning, but the reverse is also true: The process by
which we make sense of physiological change through
social interaction also influences the recovery of
physical performance, including appetite and food con-
sumption. This social adaptation to physiological
change can be described as remapping the body. Thus,
recovery from illness and treatment is irreducibly a
physical and a social process, the study of which
requires the adoption of an embodied perspective that
puts “minds back in bodies, bodies back into society and
society back into the body” (S. Williams & Bendelow,
1998, p. 3).
In an important study, Kelly (1992) explored the
experiences of ulcerative colitis patients who under-
went radical surgery (total colectomy and ileostomy)
and found that although surgery cured the colitis, it
created tension between the patients’ private sense of
selfhood and their public identity. Recovery entailed
not only learning how to operate the appliance and
come to terms with a radically changed physiology
but also coming to terms with the consequences that
this bodily change had for their sense of self and their
social identity, particularly with regard to intimate
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relationships. The negotiation of a public identity was
complicated by the fact that ileostomy can be con-
cealed in many social interactions, allowing the
ileostomist to pass as “normal” if he or she so chooses.
However, ileostomists must constantly face the possi-
bility that their identity will be revealed by failure of
the appliance and must also confront the difficulty of
disclosing their physiological difference to would-be
intimates, with all the possibilities for embarrassment
and rejection that this entails.
Esophagectomy patients have much in common
with ileostomists. They, too, must adapt to profound
physical change that affects a major bodily function.
Although the stigma is perhaps less acute than that felt
by ileostomists, esophagectomy patients also have to
deal with a spoiled identity and the question of whether
to disclose their physiological difference. The bodily
change of esophagectomy might be less stigmatized
than that of ileostomy, but the esophagectomy patient
has the additional burden of negotiating the identity of
cancer patient. A key aspect of the cancer patient iden-
tity and sense of selfhood is the constant threat of
recurrence, particularly in esophageal cancer, where
rates of recurrence are high and usually lead to death.
Clinical studies describing outcomes after esophagec-
tomy focus on survival, mortality, morbidity and
dysphagia (difficulty swallowing). Some quantitative
researchers have attempted to measure changes in qual-
ity of life after esophagectomy (McNamee, Shenfine, &
Bond, 2003; Sweed, Schiech, Barsevick, Babb, &
Goldberg, 2002), but other aspects of recovery have
been less well explored (Harris & Griffin, 2003).
Qualitative accounts of patients’ experiences are par-
ticularly lacking yet provide valuable insights that
might inform changes in service provision. In this
study, we have explored the experiences of patients
identified as having appetite loss after esophagectomy
and documented how they learn to eat again and
resolve problems relating to their sense of selfhood and
their social identity.
Method
A two-stage research design was adopted. In Stage 1,
patients undergoing esophagectomy for cancer at
Bristol Royal Infirmary over a 10-month period were
invited to participate in a study investigating health-
related quality of life (HRQL) after major surgery.
Patients completed the valid, generic cancer question-
naire, the EORTC QLQ-C30, version 3, (Aaronson et al.,
1993). Questionnaires were completed 3 weeks before

surgery, 6 weeks after the operation, and at 3-month
intervals during the first postoperative year. Sixty-five
patients underwent esophagectomy during the study
period. Four patients elected not to participate in the
questionnaire study, and 4 died from complications of
the operation.
The findings reported below are from Stage 2, in
which a subsample of patients was selected for inter-
view. The aim was to gain a more in-depth under-
standing of patients’ experiences of appetite loss and
how this affected their quality of life. Semistructured
interviews enabled informants to express their expe-
riences in a flexible and informal manner and raise
novel issues that were salient to them, (Britten, 1995).
We were interested in interviewing patients who had
reported “quite a bit” or “very much” appetite loss
3 months after surgery in the Stage 1 questionnaire.
Of the 57 patients completing questionnaires, 47
reported problems with appetite loss on at least one
occasion during the first postoperative year; the
remaining 10 were excluded from the sampling frame.
We also excluded patients whose cancer had recurred,
on the grounds that their disease was now terminal,
making an interview inappropriate and possibly dis-
tressing. Informants were randomly selected from the
remaining sampling frame until sequential analysis
revealed that the emerging analytical themes were sat-
urated, making further interviewing redundant. This
was achieved after 11 interviews. None of the potential
informants declined to be interviewed. The informants
ranged from 54 to 74 years. More men than women
were interviewed (8 and 3, respectively), reflecting
the higher incidence of esophageal cancer in the male
population.
Interview guides were designed by the whole
research team and were modified as the interviews pro-
gressed. Two interviewers conducted the interviews,
which took place in the informants’ homes. To achieve
continuity the two interviewers collaborated closely in
planning how the interviews would be managed, sat in
as an observer on each other’s first interview, and met
frequently (with the other members of the team) to dis-
cuss new themes that were emerging from the data and
to plan changes to the interview schedule. Before the
interviews commenced, the research team discussed
whether other family members would be allowed to be
present, as this might change the dynamics of the inter-
views. It was decided that the interviews would focus
on the selected informants, but close family members
would not be excluded, and their contributions would
be transcribed and analyzed for the following reasons:
The interviews were conducted in the informants’
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Wainwright et al. / Remapping the Body 761
homes, where the exclusion of others can only be
requested (rather than insisted on) by the interviewer;
some of the informants were frail and might benefit
from the support of a relative; and relatives are often
involved in the treatment and recovery process and
might, therefore, provide useful information.
The interviews were transcribed verbatim by a
research secretary and analyzed by two members of
the research team (DW & JB) using the Atlas.ti soft-
ware package. Initially, each researcher worked alone
reading a subsample of four transcripts to identify prin-
cipal themes. Coding schemes were compared, and
common category and theme definitions agreed. All
transcripts were then coded and recoded using the con-
stant comparison approach by both researchers, com-
paring interview text with agreed theme and category
definitions, with close collaboration over subsequent
revisions of the coding scheme (Strauss, 1987).
Quotations from the transcripts are presented below to
illustrate the themes that emerged from the analysis.
The study was approved by the NHS Local Research
Ethics Committee. All informants were provided with
information about the study and their involvement in it,
and written consent was obtained prior to interviews.
Findings
Three key themes emerged from the data: the
meaning of weight loss and physical change, remap-
ping the body, and eating as a social activity: stigma
and embarrassment (see Figure 1).
The Meaning of Weight Loss and
Physical Change
Variations in body weight are culturally significant,
and the meanings ascribed to them differ historically
and across cultures. When or where food is scarce, fat-
ness might be valued as a sign of social status. If food
is plentiful, the reverse might be true, and in the devel-
oped world, particularly in the United Kingdom, obe-
sity has come to signify overindulgence. The media are
saturated with positive images of slender bodies, and
the rare representations of the “overweight” are typi-
cally disparaging. In the United Kingdom, government
policy reinforces the stigmatization of obesity and the
consumption of “junk” food, aiming to promote
healthy eating, exercise, and weight loss. However, the
equation of low body weight with healthiness is not
absolute. Notions of ideal body weight might be well
toward the low end of the distribution, but there
remains a point at which healthy slimness begins to
762 Qualitative Health Research
Themes & Sub-Themes
Key Themes
Meaning of weight
loss & physical
change
Re-mapping the
body
Eating as a social
activity: stigma &
embarrassment
shade into the unhealthy domain of eating disorders
and disease. There is, therefore, a tension in the pursuit
of weight loss. Up to a point, weight loss is valorized
as a sign of self-discipline, moral worth, and healthy
behavior. Beyond that point, further change in quantity
becomes a change in quality, and the moral value of
weight loss is turned on its head, becoming a marker of
illness rather than healthy living.
Weight Loss and the Identity of Cancer Patient
The contradictions within notions of healthy body
weight and weight loss are particularly salient to the
cancer patient because changes in body weight can indi-
cate the progress of disease or the process of recovery.
There is a temporal dimension to the meaning ascribed
to changes in body weight that is bound up with pro-
gression along the illness and treatment pathway. This
pathway can be conceptualized in simple terms as the
onset of disease, treatment, and recovery or death.
Weight loss is ascribed different meanings according
to the point on the pathway at which it occurs. Weight
loss during the pretreatment phase might be worrying
because it is closely allied in the popular imagination
with death from cancer. However, once a diagnosis has
been made and treatment has begun, the meaning of
weight loss might change; that is, once the identity of
cancer patient has been adopted, then weight loss can
be normalized as part of the disease and treatment
pathway. Thus, weight loss as an aspect of untreated
disease or a side effect of clinical intervention can be
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Figure 1
Sub-Themes (1) Sub-Themes (2)
Weight loss &
identity of cancer Loss of appetite
patient
Taste & smell of food
Surgery as bodily
disruption
Difficulty swallowing
Re-located &
resized stomach
Meaning of pain
diarrhea, nausea..
satisfactorily incorporated into the narrative of illness,
treatment, and cure without necessarily implying a
negative outcome.
Weight lost after treatment takes on a more sinister
significance, becoming a marker for the effectiveness
of the treatment and the patient’s success in fighting
the disease. Thus, body weight becomes something to
be closely monitored and struggled with, almost to
the point where gaining weight is seen as a means of
beating the disease or at least strengthening the body
so that it can resist recurrence of the cancer.
Between us we’ve kept my weight steady and that’s
the main thing, and I weigh myself just about every
day when I have a shower. . . . If I see it going down
a bit, I do make an effort to try and eat a bit more and
put it back up again.
Further into the posttreatment phase, sudden weight
loss is perceived to be an indication that this struggle
has been lost (if the cancer recurs, the treatment
options are few and only palliative in intent). This
amounts to a radical replotting of the illness narrative,
in which the story of disease-treatment-recovery is
rewritten as disease, failed treatment, and death.
I think if I could get back to 11st which would be
about like a stone on since when I came out of hos-
pital, if I can get a stone on me I would feel I was
getting somewhere . . . also it is a big worry espe-
cially at the moment . . . I have got to watch out for
weight loss in case the cancer has come back again.
So I would say that plays on my mind as well.

The meaning ascribed to changes in body weight
has a potent impact on recovering cancer patients’
sense of selfhood, determining whether they see
themselves as survivors or victims. There was a sense
that weight loss as a sign of recurrence should be
resisted, almost as if avoiding the physical appear-
ance of the terminally ill cancer patient would offer
some peace of mind. The reaction of others is central
to maintaining this belief, making the presentation of
a “healthy-looking” body weight imperative:
Respondent: I don’t look particularly skeletal you
know it is just the fact of compared to how I was I
look a lot thinner and now and again you get a little
thing that sort of upsets you. Some friends of ours,
their daughter lives round the corner, and I was on
one of my little daily walks and that is the first time
I seen her since the operation and she walked straight
past me you know, couldn’t believe it, she didn’t
recognize me at all and things like that sort of upset
you a bit, you know. It doesn’t matter . . .
Wife: I think it is, what you said, it is how people per-
ceive you and as [informant] has said, if he had lost all
his hair as well and the weight, people look at you and
think “Oh.”
Thus, the incentive to maintain or increase body
weight is concerned not only with the physical aspects
of quality of life, such as physical performance, but
also with its affective aspect: It is a means of fending
off identification with the terminal cancer victim and
thereby avoiding the emotional consequences of immi-
nent mortality. This smacks of denial or self-delusion,
but it might be an important coping mechanism. As
Lazarus (1983) has suggested, “A little illusion is nec-
essary for good mental health” (p. 28).
The return to preoperative or even preillness body
weight and patterns of eating was also viewed as an
important part of the return to “normality” and a sign
that broader aspects of biographical disruption caused
by the disease, such as affects on relationships, work,
and leisure activities, might also be reversible:
I just want to get back to how I was . . . before I went
in hospital, because . . . I could have jogged a couple
of miles, I felt so fit and healthy and normal. I just
want to get back to that you know.
Constant monitoring of body weight coupled with
strategies for increasing food intake and increasing body
weight were seen as important factors in recovery from
disease and the return to “normal” life. However, the
return to normal was not always viewed as a return to
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Wainwright et al. / Remapping the Body 763
preoperative or preillness body weight. Informants who
had previously considered themselves to be overweight
had a more ambivalent approach:
You get a bit paranoid about your weight, you keep
looking in a mirror and say god you’ve lost . . . you
see I was quite a big chap before, about 15st 4. . . .
Down to 12 now, so that takes a bit of getting used
to. It is about where I ought to be really, I was over-
weight before, but I don’t really want to lose any
more if I can help it.
There is clearly a degree of ambiguity about what the
new body weight might signify. Outside of the context
of cancer, a reduction in body weight might be viewed
positively as a transition to a healthier, more socially
desirable body, but when the reduction is due to cancer,
the meaning ascribed to the new body weight is less
certain; it might be viewed as healthy or unhealthy,
depending largely on whether the new weight is stable
or simply a point on a further downward trend.
Two competing notions of healthy body weight are
invoked in this context: the very immediate threat of dis-
ease-related weight loss and the less tangible hazards of
obesity. One might expect that the recent experience of
cancer would always trump concerns about obesity
when it comes to ascribing meaning to body weight, but
it reflects the degree to which the obese are stigmatized
in the United Kingdom that this was not always the case.
The return to normal body weight does not necessarily
mean a return to preoperative body weight so much as a
desire to conform to culturally prescribed images of the
normal (or desirable) body. Among previously over-
weight patients, reluctance to regain weight could even
lead to ambivalence about compliance with medical
advice to eat a high-calorie diet:
I was on the “Enlife” drinks, which is 3000 calories
a . . . 300? calories a carton. They told me I had to
drink three a day. . . . I’ve still got a few out there
now. I don’t want to put on too much weight—1000
calories a day drinking that.
This tension was also present in some informants’
attitudes toward healthy eating. Some were reluctant to
eat high-calorie foods, which they described as “junk
food,” even though they were struggling to maintain
their body weight. In the following quotation, the
informant appears to be making a moral claim relating
to the belief that diet might be implicated in the etiol-
ogy of some cancers, as if eating a healthy diet would
demonstrate that the disease was not self-inflicted:
764 Qualitative Health Research
I tend to have to eat . . . food that will keep my
weight up which is a bit boring, I’d rather eat more
salads and things like that . . . that I prefer. . . . I try
and eat junk food but I don’t like it . . . I stopped eat-
ing meat quite a few years ago, for sort of various
reasons and that might be part of it as well, ’cause
most of the high calorie stuff is meat, but I eat a bit
now if it’s organic and free-range sometimes.
There is clearly a tension between the desire to
return to normal and the desire to avoid obesity. The
patient’s spouse often influenced how this tension
was negotiated, sometimes leading to conflict. In the
following exchange, a previously overweight patient
argues the merits of weight loss with his wife:
Wife: Well, that’s his picture up there.. and he was a bit
bigger than that, and that’s only a few years . . . he was
like that about 18 months ago . . . so I mean where’s
his stomach gone? (emphatically) I miss his stomach.
Interviewer: Are you conscious of it yourself . . . of
your weight in the mirror and things?
Informant: No, no it doesn’t bother me, not one . . .
in fact I feel better as I am ’cause I lost some weight.
All that weight I accumulated years ago was beer
and nothing else and that’s got rid of that as far as
I’m concerned no it doesn’t bother me . . . ’cause the
thing is, you say “oh he’s lost a lot of weight,” I’m
still over 13 stone which is quite a lot you know what
I mean
Wife: I’m more than that . . . I used to be 7 stone,
my height is for about 10 stone, and as soon as
I became diabetic and the osteoarthritis set in and I
can’t exercise . . .
Informant: Well that’s why you put the weight, you
can’t do nothing about that.
The negotiation of the meaning ascribed to
changes in body weight is structured at several differ-
ent levels, including firsthand experiences of cancer
cachexia, broader cultural prescriptions of healthy or
desirable body weight, and, at an intermediate level,
close interpersonal relationships. In the above quota-
tion, the meaning ascribed to the patient’s body
weight is driven not only by the stigma of obesity but
also by the wife’s concerns about her own weight and
health. This argument could also be reversed, with the
spouse arguing that weight loss was a good thing.
This from a different couple:
Informant: Well, when I went in to have the operation
I was 18 stone 4 . . . but now I’m 16 stone. . . . but I
went down in the 15 stones and I’ve gone up to 16
stone now. . . .
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Wife: (coming into the room) Its not good (laughs)!
Putting on weight . . . not good going up (laughs) . . .
Interviewer: Did you (addressing informant) feel that
weight was a problem to you or did you feel OK ?
Informant: I felt OK. . . .
Wife: The trouble is there’s strokes in the family. His
mum had a stroke, her sister had a stroke. His dad
had a brain hemorrhage . . . you know. Um, they’re
all on the big side . . . well, they were. And I just
don’t want him to be like his mother was.
Thus, it is not just the patient’s beliefs about body
image but also those of the spouse that play a role in
determining postoperative strategies for weight man-
agement. These findings have consequences for post-
operative care. It cannot be assumed that all patients
will want to return to their preillness body weight or
that they will automatically comply with a high-calorie
weight gain diet. Some might wish to stabilize their
weight at a lower level. Patients have differing beliefs
about what constitutes their ideal body weight, and the
establishment of satisfactory postoperative patterns of
food consumption might depend on clinicians’ and
patients’ agreeing on a target weight and developing an
appropriate diet to achieve it. Given his or her influ-
ence on food consumption, it is important that the
patient’s spouse be included in the negotiation of a tar-
get body weight, particularly where the spouse is the
primary food purchaser and preparer of meals.
Cancer patients ascribe great symbolic importance
to weight gain as an indicator of recovery from disease,
even if notions of ideal body weight are influenced by
other cultural and interpersonal factors. Even where
the desire to gain weight was not diluted by concerns
about obesity, many informants found it difficult to
achieve. We turn now to the physiological and social
factors that impede or facilitate the establishment of
satisfactory patterns of eating and weight maintenance.
Surgery as Bodily Disruption
Many informants reported radical changes to the
ways in which they experienced the physical aspects
of appetite and eating following treatment. Their
physiology had been changed by the surgical proce-
dure (an esophagectomy entails removing a section of
the esophagus and fashioning a new one using part of
the patient’s stomach), leading to the transformation
and increased consciousness of sensations that were
previously taken for granted. Appetite, the taste and
smell of food, swallowing, the location of the stom-
ach, and the sense of satiety all felt quite different
after surgery. In the following subsections, we

explore these changes and the ways in which patients
reacquaint themselves with their body.
Loss of appetite. The physical signs of appetite that
provide an impetus to eat are frequently reduced or
completely absent for several weeks (sometimes
longer) after surgery. Of course, appetite loss might
also have occurred prior to treatment; however, there
was evidence to suggest that appetite loss after
surgery was iatrogenic rather than just a side effect of
the disease. Several informants complained that their
body no longer told them when they needed to eat,
that the pathway between the stomach and the brain
had literally been cut.
[There isn’t] anything in my stomach or in my chest
or whatever which says to me you’ve got an empty
stomach. . . . It feels as if it’s just mechanical . . . one
of the doctors said you know, lots of nerves get cut
during the surgery, and it could be that. Sometimes
the feedback mechanism is missing, I don’t know.
Taste and smell of food. As well as loss of appetite,
there were other physiological changes that were dis-
incentives to eating; for example, some informants
reported that the taste and smell of food and drinks
had been adversely affected, making previously
enjoyed dishes unpalatable, to the point where even
their smell could induce nausea.
Things don’t seem to taste quite right . . . a shepherd’s
pie which I had Monday I thought this don’t seem to
taste right somehow. It’s not bad enough to say oh I
am not going to eat it. It is a bit sort of heavy and
sickly. Not too bad, but it is noticeable, it doesn’t taste
quite the same as it did before I went into hospital.
Difficulty swallowing. This can occur prior to surgery
if the tumor obstructs the passage of food down the
esophagus, but it can also occur as a result of treat-
ment, as the autonomic aspects of the swallowing
mechanism, for example reduced salivation and scar-
ring or inflammation at the site of the surgery, might
be disrupted by surgery:
Swallowing is not what it used to be. The physical
act of swallowing isn’t quite . . . um, before the oper-
ation I would say that my swallowing was automatic.
Now, it can be labored at times or it doesn’t happen.
And from a different informant:
My mouth goes very very dry on me . . . I wake up
during the night and my tongue is stuck to the top of
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Wainwright et al. / Remapping the Body 765
my mouth and when my mouth gets like that you
can’t eat any food because it won’t go down, like vel-
cro it sticks to it and you try eating your food and it
just goes round your mouth and you can’t swallow it.
Relocated and resized stomach. After esophagectomy
the esophagus is shorter, and the stomach is, therefore,
located higher up in the abdomen. Some informants
reported a changed sensation of where food was trav-
eling to in the body and symptoms relating to this.
I won’t get that big, I know ’cos me stomach has sort
of shrunk—yeah, It’s up here now. That’s why I’m
getting all these problems ’cos my stomach doesn’t
want to be where it is.
More important, esophagectomy entails substan-
tially reducing the size of the stomach and, therefore,
diminishes the capacity for food consumption:
You only got a little space so you can only eat a certain
amount . . . so you got to sort of get adjusted to that . . .
but I am now, I know roughly how much I can eat.
From another informant:
I tried to cook the things for a meal that I would nor-
mally eat before I went into hospital. And I found
that before I got through a quarter of it I started feel-
ing sick, getting the stomachache and diarrhea.
Many informants were conscious of feeling full
after eating a comparatively small amount of food.
This feeling of satiety was often different from that
experienced before surgery: The gap between feeling
comfortably full and experiencing discomfort, pain,
nausea, or even vomiting and diarrhea had narrowed,
so informants often did not realize that their stomach
was full until they experienced these unpleasant symp-
toms. Following surgery, informants had to learn what
these symptoms were telling them about the status of
their body.
The meaning of pain, diarrhea, nausea, reflux, and
vomiting. These symptoms were widely reported, and
as well as indicating that too much food had been
consumed, they were often ascribed different mean-
ings, for instance, as an indication of the unsuitability
of particular types of food:
I think I could drink a big tumbler of orange squash
now and nothing would happen, but if I drank a cup
of milk I could be almost guaranteed to either get the
stomach-ache or feel sick after.
766 Qualitative Health Research
Another interpretation was that the occurrence of
these symptoms indicated that the body had not yet
recovered from surgery. In some instances, this was
described in terms of the body healing itself, but there
were also notions of the body “settling down” or
adjusting to its new postoperative status. In the follow-
ing quotation, an informant describes how the experi-
ence of “dumping” (a sudden episode of diarrhea,
often accompanied by giddiness, occurring shortly
after eating) had become less frequent as his system
had adapted to the changes that surgery had wrought.
I don’t get it [dumping] very often now . . . mainly
just because my system’s adapting . . . I think that’s
happening.
Another informant described the working of the
pylorus valve and compared the process by which it
had returned to normal functioning with the way in
which the body slowly comes to recognize that a rib
removed during surgery is no longer present:
At the bottom of the stomach there’s a thing called a
pylorus valve which allows the food to go through in
dollops. And it could well be that is not synchronized
terribly well at the moment, and the whole body is
just a bit, you know, something used to be here and
now it is here and it just takes a little bit of time to
get back, it is like this rib that is missing you know
and it is gone but my mind thinks it is still there.
In short, the bodily disruption caused by surgery,
results in the patient’s experiencing everyday physio-
logical processes as alien and problematic. Successful
adaptation entails a process of relearning or remapping
the body.
Remapping the Body
This process by which the body adjusts to changes
in the internal milieu is presented as largely indepen-
dent of the patient’s conscious thoughts and actions. It
is an example of homeostasis, in which the uncon-
sciously knowing body “learns” to adapt, (Freund,
1990). Although this process was not under conscious
control, informants’ actions and behavior did have an
influence on it, for instance via their eating habits.
Adaptation seems to involve a kind of dialogue
between the informant’s embodied experience and
cognitive choices about the quantity, type, and timing
of food consumption. Preoperative assumptions about
eating were often disrupted by surgery, and patients
had to listen closely to the signs coming from their
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body to learn how much and what types of food could
be eaten without causing nausea, vomiting, pain, or
diarrhea. This dialogue between mind and body is
often presented as a negotiation; it is a matter of the
patient not simply listening to physiological signs but
also trying to tempt the body back to “normality,” for
example by eating slightly larger portions or trying to
introduce small amounts of food that are not well tol-
erated. Many informants gave the impression that they
were subjectively grappling with an uncooperative and
disobedient body.
All informants had been advised by their doctor to
eat small amounts of food at frequent intervals, but the
eagerness to return to normal patterns of eating occa-
sionally overrode this advice. Some informants sug-
gested that nausea, vomiting, or diarrhea were evidence
of their body’s telling (sic) them that they were trying
to do too much too soon, that is, that they were trying
to return to preoperative/preillness patterns of eating
before their body was sufficiently healed to allow this
to happen. There was a tension between the desires of
the patient and the limitations of their postsurgery body.
When I got back home [after surgery] I tried to
get back to normal eating too quick. I think I over
done it a bit. . . . I tried to sort of cook the things for
a meal that I would normally eat before I went into
hospital. . . . I thought I have been home two months,
I’m really going to try and get back to normal and I
had virtually the size of meal that I would eat before
I went in hospital and I really felt sick after that.
Adaptation to surgery entailed remapping the
embodied sensations of eating, learning new limits to
what and how much could be eaten, and investing
signs and symptoms like nausea and vomiting with
new meanings as indicators of satiety or the unsuit-
ability of certain foods. Moreover, the act of eating
frequently had to be adapted to find new ways of
chewing and swallowing food:
I have to be careful at mealtimes. I have to concen-
trate on eating . . . on masticating well, not talking,
not getting too excited and so forth, and then I nor-
mally eat successfully.
When the physiological changes that occur after
surgery and the necessity of remapping the body are
considered in total, it becomes apparent what a joy-
less activity eating had become for many of the infor-
mants. First, appetite—the physical drive to eat—is
diminished or completely suspended. Previously

enjoyed foods might smell or taste radically different,
to the point where they can trigger nausea or vomiting.
Even when food has been consumed, it might not give
the satisfying feeling of satiety that normally follows a
meal but is likely to cause pain, nausea, vomiting, or
diarrhea. Hence, despite the strong imperative to main-
tain body weight by returning to normal patterns of
eating, it is hardly surprising that so many find this a
difficult objective to achieve. Rather than responding
to hunger pangs, the patient must make a cognitive link
between food consumption, weight maintenance and
health status. In this sense, food consumption is trans-
formed from the satisfaction of a physical drive into a
consciously chosen health maintenance strategy, rather
like taking exercise. As with exercise, the absence of a
strong physical imperative might make the strategy dif-
ficult to sustain: It is a routinized chore rather than the
satisfaction of an embodied need. The disincentives to
eating are so strong that they require a high degree of
determination to overcome them, which becomes a
mirror image of withdrawal from an addictive sub-
stance, whereby adverse reactions are caused by con-
sumption rather than abstinence.
Eating as a Social Activity: Stigma
and Embarrassment
Eating is not purely an individualized physical
activity; it entails entering into social relations and is
bounded by social norms and conventions governing
when food is eaten, what and how much is eaten, and
what might be termed acceptable eating behavior
(Caldwell & Watson, 2004). Following surgery, many
patients felt that they were physically incapable of
meeting these expectations and experienced embar-
rassment or stigma as a result of their failure to do so.
Eating out is the most pronounced example of this.
Informants reported reluctance to eat out because
ordering small amounts of food or leaving food
uneaten would lead to embarrassment. Others were
worried by the risk of vomiting in public.
We have been invited out for lots of meals and I said
when I am ready I will give you a shout but at the
moment I am still a bit nervous . . . I know that when
I do go out for a meal I will be asking for a child’s
portion and I suppose it is just . . . what their reply is
going to be. When you see someone of my size, 6ft
4 . . . go in there and say I want a child’s portion of
fish fingers and chips, peas, I think that is going to be
the hardest part.
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Wainwright et al. / Remapping the Body 767
These issues of stigma and loss of face also applied
to eating at home, although they were less pronounced.
The new regimen of different foods and small amounts
taken frequently could disrupt long-established family
routines, leading to feelings of guilt at being a “burden”
on others.
We went to Sainsbury’s shopping and went into the
café beforehand and I was actually sick in there and
you know that really is a total turn off isn’t it? It
frightens the life out of me; so I am almost getting
reclusive you know. I mean the family came at the
weekend and [wife] fed all them and I had my tea
separately. I was just absolutely terrified that I was
going to be ill in front of them you know. . . . so we
don’t actually go out for meals at the moment. I am
looking forward to the day when we can you know
and I didn’t realize what an important thing it was. It
isn’t so much the food it is sort of more of a social
thing isn’t it?
To use Goffman’s (1963) terminology, this process
is about the management of spoiled identity. Leaving
aside other visible signs that might identify the indi-
vidual as a cancer patient, for instance loss of body
weight or hair, this failure to meet social expectations
of eating behavior is the most visible sign of their
new identity. There are two aspects to this. First, the
ordering of small amounts of food or the inability to
eat what is served may be a signifier of illness, but
there are strategies by which such signs can be dis-
guised or concealed so that the social activity can be
maintained without the spoiled identity being
revealed. However, the more obtrusive symptoms,
such as choking, inability to swallow, and vomiting,
lie beyond the individual’s control; they are an
example of the individual’s being let down by the
body. Therefore, to conceal their spoiled identity,
some informants, particularly in the early stages of
recovery, were obliged to withdraw from eating in
public or even in front of family members. Successful
adaptation also entailed a twofold process. The pre-
requisite was gaining control over the body to the
point where they could trust that it would not let them
down in public. Once this confidence had been
regained, there was a second process of social adap-
tation, in which the individual learned to renegotiate
the conventions of public dining, for example estab-
lishing that it is acceptable to order just a couple of
starters or for an adult to order a child’s portion of
food.
768 Qualitative Health Research
Even within the home, similar processes of adap-
tation were often required, with some informants
choosing to eat alone. Even though their partner was
obviously fully aware of their spoiled identity, they
were still reluctant to confront them with the actual-
ity of it. Other domestic arrangements also had to be
rearranged: the frequency, size, and content of meals,
for instance. All of this can disrupt long-established
patterns of eating as well as create extra work. In the
following quotation, an informant’s wife describes
her attempts to provide a meal that her husband could
successfully eat:
Savoy cabbage, potato gratin, and cold pork and apple
sauce and stuffing—that’s what he had on his plate.
Well then after about four or five mouthfuls he started
to choke and cough . . . so then he had that up, so we
thought well we wouldn’t try any more of that. So then
we waited and he took this Gaviscon . . . and waited
about an hour—a good hour, didn’t we? And then you
. . . I thought well I’ll take the cabbage off the plate and
give him peas—’cos he’s always been able to eat
peas—but he couldn’t . . . he couldn’t er . . . the same
thing happened . . . and that’s never happened before.
So then as a last resort about teatime he had salmon and
he ate that, but that was a couple of hours after.
The disruption to family and social life means that
social relations have to be renegotiated. This process
of social adaptation mirrors the physical adaptation
described in the previous section and might have an
equally important impact on the patient’s quality of
life and ability to maintain body weight.
Discussion
This exploratory study of a previously underre-
searched patient group documents some of the
physical and psychosocial difficulties experienced by
patients as they struggle to maintain or increase body
weight following surgery for esophageal cancer. For
most people, eating is a joyful and satisfying activity
to be celebrated and shared with friends and relatives.
For esophagectomy patients, eating can be become an
unpleasant chore that they struggle to accomplish.
The pleasures of eating are often replaced by unpleas-
ant sensations such as nausea or diarrhea. Dining
with family or friends may be disrupted by changes in
the capacity for food or the potential embarrassment
of choking or vomiting. The process of learning to eat
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again entails considerable anxiety and uncertainty
about the future.
The findings also reveal a complicated process of
adaptation or rehabilitation that is at once both
physical and psychosocial. Following surgery, the
esophagectomy patient must adapt to a changed phys-
iology that feels unfamiliar. For example, the normally
unconscious swallowing mechanism might require a
conscious effort of relearning or reacquaintance if
problems of choking or vomiting are to be avoided.
This active process of remapping the body also neces-
sitates the renegotiation of social identity and internal-
ization of a new sense of self or personhood.
The findings from Kelly’s (1992) study of ileostomists
regarding the management of spoiled identity are also
pertinent to the experiences of esophagectomy patients.
The requirement to eat only very small amounts, cou-
pled with the constant possibility of choking, makes it
difficult for the esophagectomy patient to comply with
social conventions of dining and food consumption, and
the fear of censure or stigma can lead to withdrawal
from social eating both in public and in the home. These
taboos have to be confronted and negotiated as part of
the rehabilitation process. The reactions of others,
including family members, friends, and the broader
social network, also have consequences for the patient’s
sense of selfhood, particularly by influencing the way in
which symptoms are interpreted and understood; for
example, reduced body weight might be interpreted
either as an indicator of health or as an indication that
the cancer has returned.
In short, although esophagectomy might remove the
cancer, it is not sufficient to overcome the biographical
disruption caused by the disease and might even add to
it. The patient must go through a prolonged process of
physical, psychological, and social adaptation before
an optimal quality of life can be achieved. However,
despite the difficulties highlighted in this study, in the
United Kingdom, relatively little professional support
is provided for the rehabilitation of patients following
esophagectomy. This contrasts with the extensive mul-
tiprofessional support provided for the rehabilitation of
cardiac patients or amputees. Learning to eat again
after esophagectomy can be every bit as taxing as
learning to walk again after amputation of a lower
limb, but patients often receive only limited nutritional
advice and access to a support nurse to help them adapt
to the physical and psychosocial consequences of
surgery. The question is whether more extensive can-
cer rehabilitation services would improve this process

of adaptation and, if so, what form such services
should take.
Improvements in the treatment of cancer have
increased the proportion of patients who are cured
or whose life expectancy has been substantially
increased (Gerber, 2001). Cancer survivors often have
ongoing physical and psychosocial needs caused by
the disease or treatment. However, despite the growing
pool of cancer survivors, relatively little attention has
been paid to their rehabilitation. A recent review found
that although cancer rehabilitation received consider-
able attention in the United States during the late 1970s
and early 1980s, the momentum has not been main-
tained, and the sparse literature published since that
highpoint reveals “a dearth of research, attention, or
expansion with respect to cancer rehabilitation”
(DeLisa, 2001, p. 972).
The recent literature might be sparse, but there is
some evidence relating to the different types of reha-
bilitation offered in different settings. Definitions of
cancer rehabilitation vary in terms of the emphasis
placed on physical or psychosocial aspects of recovery.
Early definitions (Gunn, 1984) focused on restoring
“individual defects,” but Dudas and Carlson (1988)
have offered a more inclusive definition: “the dynamic
process directed towards a goal of enabling persons
to function at maximum levels in all life’s spheres
within the limits imposed by the disease” (p. 186). This
broader definition reflects a shift in the practice of can-
cer rehabilitation toward a more patient-focused
approach, whereby staff and services are organized
around the specific needs of individual patients
(Hunter, 1998). Psychosocial rehabilitation is central
to this approach, aiming to strengthen individual cop-
ing resources not just by psychotherapy but also by
increasing familial and social support, (Ronson &
Body, 2002).
Our study found that esophagectomy patients had a
range of physical and psychosocial problems, which
were often interrelated. The literature on cancer reha-
bilitation paints a similar picture in relation to other
cancers, leading to the development, particularly in the
United States, of multidisciplinary cancer rehabilita-
tion teams led by a physiatrist—a physician with
expertise in physiology, assessment of disability and
quality of life, and other aspects of rehabilitation—but
also comprising occupational therapists, speech thera-
pists, psychologists, and social workers. Ideally the
multidisciplinary team has a shared knowledge base,
involves the patient and family in the decision-making
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Wainwright et al. / Remapping the Body 769
process, and meets regularly to develop the individual-
ized care plan and monitor progress (DeLisa, 2001).
Not all cancer rehabilitation services subscribe to the
patient-centered, multidisciplinary model described
above, and this is perhaps one of the reasons why the
evidence of effectiveness is mixed. A systematic review
of psychological therapies for cancer patients could
make only tentative recommendations about their effec-
tiveness despite examining more than 150 randomized
controlled trials, (Newell, Sanson-Fisher, & Savolainen,
2002). Lack of rigor in the conduct of trials was a major
problem, but the provision of psychological therapies in
isolation rather than as part of a multidisciplinary pro-
gram might also have reduced their effectiveness.
Interventions aimed at addressing physical impairments
have been more favorably appraised (Fialka-Moser,
Crevenna, Korpan, & Quittan, 2003) but do not address
the broader psychosocial aspects of rehabilitation.
Although individual studies of multidisciplinary
cancer rehabilitation have reported improvements in
recovery (Cole, Scialla, & Bednarz, 2000), the gener-
alizability of individual studies is limited by the wide
range of variables that can influence outcomes. Not
only do the composition and programs of the teams
vary substantially, the effectiveness of a given inter-
vention also depends on the type of cancer and on the
psychological attributes of different patients, for
example their cognitive coping style (Petersson et al.,
2002). Indeed, the philosophy of patient-focused reha-
bilitation not only recognizes the need for individual-
ized care packages that address the specific needs of
particular patients but, by extension, also implies that
the effectiveness of such programs might also vary
between patients depending on their personal charac-
teristics and the magnitude of the problems they
encounter.
Although the evidence base cannot give an
unequivocal account of the effectiveness of cancer
rehabilitation in general, research still has a role to
play in defining rehabilitation programs for patients
with specific types of cancer who have undergone
particular interventions, even if these programs will
need to be adapted to individual patients. The find-
ings of this study provide some indication of the
problems faced by esophagectomy patients and give
some indication of the types of rehabilitation inter-
ventions required to address them.
Little is known about how to encourage patients to
eat again (Capra, Ferguson, & Ried, 2001; Harris &
Griffin, 2003). Although there is some evidence that
770 Qualitative Health Research
enteral feeding (through a pipe into the stomach) after
discharge from hospital might improve nutrition and
quality of life following surgery for cancer (Beattie,
Prach, Baxter, & Pennington, 2000), this approach
only compensates for the inability to eat rather than
tackling the physical and psychosocial barriers to
normal eating. Our findings document the interweav-
ing of physical, psychological, and social factors that
need to be addressed before this goal can be achieved.
One issue that emerges from our findings is that set-
ting a target body weight is complicated by patients’
(and spouses’) differing beliefs about body image, so
achieving concordance between doctor, patient, and
spouse over what body weight can or should be
achieved and sustained and what dietary strategy will
be required to do so might lead to a more successful
outcome. There might be gender differences in the def-
inition of ideal body weight that were not picked up in
this study because of the small number of female infor-
mants; this might be profitably explored in further
research.
The findings also underline the extent to which the
identification and medical management of physical
side effects, such as dysphagia, diarrhea, nausea, and
vomiting, need expert support in the early postopera-
tive period. Liaison between primary care and special-
ist cancer centers with appropriate nursing support
might facilitate this and other aspects of adaptation and
coping, such as the management of psychosocial func-
tioning. The interface between secondary and primary
care is, therefore, particularly important for this patient
group and should be actively addressed at discharge
from hospital.
Esophagectomy is a physiological intervention, but
as our findings suggest, it has profound consequences
for the patient’s sense of self and social identity.
Rehabilitation and coping are as much about managing
these psychosocial aspects of recovery as they are
about dealing with physical symptoms. In this sense,
rehabilitation should begin prior to surgery by address-
ing patients’ expectations regarding recovery and adap-
tation to life after esophagectomy. There is a large
psychological literature on preparation for surgery,
(see Johnston’s 1986 review). As well as medical
advice on the physical aspects of recovery, preparation
might also include advice from surviving patients
regarding the social and psychological difficulties they
encountered and how they dealt with them. The most
important finding from this study is that learning to eat
again after esophagectomy requires much more than
the brief consultation with a nutritionist that makes up
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the rehabilitation strategy for many patients, particu-
larly in the United Kingdom.
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David Wainwright, PhD, is a senior lecturer in health services
research in the School for Health, University of Bath, United
Kingdom.
Vas Kavadas, is senior registrar in the Department of Surgery,
Bristol Royal Infirmary, United Kingdom.
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