Cancer as a contested illness: seeking help amidst treatment
Mary Ellen Purkis RN, PhD and Catherine van Mossel MA
Dr. Mary Ellen Purkis mepurkis@uvic.ca
Catherine van Mossel catherine@vanmossel.net
Faculty of Human and Social Development, University of Victoria, University of Victoria PO Box 1700
STN CSC Victoria, BC Canada, V8W 2Y2
Abstract: Cancer is perhaps still one of more dreaded diseases to be diagnosed with. People
carrying such a diagnosis have little difficulty legitimating access to ‘care.’ All this makes
cancer’s entry into the category of contested illnesses somewhat surprising. But field research
conducted with people experiencing diagnosis and treatment for cancer in a specialized cancer
facility reveals that how people experience their illness has little, if any, bearing on how
treatment proceeds. In this paper we explore the social practices entailed by cancer care. We will
demonstrate how those practice serve to slice away and discount experiences of cancer from its
treatment. These practices ensure large-scale compliance with treatments that produce significant
illness under conditions where evidence of effectiveness is difficult to find. Following the paths
of people who commit to a treatment plan in contrast to those who seek alternatives we will
demonstrate the effects on people of contesting this all-too-legitimate of illnesses.
Introduction
Computers these days come equipped with built in dictionaries. When you type “cancer” into the
computer dictionary, the following definition appears: “something, usually something negative,
that develops or spreads quickly and usually destructively.”
Beginning in 2001, with an interest in the everyday accomplishment (cf. Garfinkel, 1967) of
cancer care, we undertook a study of people’s experiences of being diagnosed and treated for
cancer. We talked with people who had been through that experience in the recent or distant past
and others who were in the midst of it. Our interest was in collecting people’s accounts of how
that experience shaped their identities including how they engaged with the process of decision
making in relation to their diagnosis. The original question for the research project arose out of
two quite distinct conversations with people who were describing their own experiences and
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experiences of friends who had had encounters with the health care system where there was a
question of something – something that may have been quite negative – that may, or may not,
have been developing and spreading in their bodies.
Curiosities about the “identity work” (Munro, 1996) inherent in the accounts of these friends
served as the initial impetus for the research. For instance, one person expressed concern about
experiencing pressure to have a surgical procedure where the link between that procedure and the
troubles that had prompted her to originally consult the physician were, in her view,
insufficiently connected. She came to view the proposed surgery as having little to do with her
concerns and more about creating opportunities to simply “do surgery.” In the end, she chose not
to have surgery. She continues to have ultrasound on an annual basis to monitor the size of the
“node” in her neck that the surgeon wanted to remove. It has never changed in the intervening
five years. The issue of surgery never arises in her conversations with her GP following one of
these scans.
In the second instance, the person accepted treatment but, because the diagnosis of cancer was
only ever provisional and not definite, she wondered, following treatment, should she think of
herself as someone who had had cancer? As someone who had had treatment for cancer where
none had really existed? As someone who had treatment that prevented the development and
eventual spread of an almost formed cancer? And perhaps most problematically and hard to take
up as representative of one’s identity, someone who has been duped by an expert system into
taking treatment when it was not necessary?
As the above examples point out, lumps that are ‘visible’ (even if through technological means)
and, therefore, available to be tested as instances of cancer can be kept intact in the body and
thus, rendered unavailable for transformation into secure diagnostic categorizations and
recommended series of treatments, professional visits and pharmaceutical regimes. Alternatively,
treatment for cancer can be pursued where no lumps are evident – and that treatment seems to
make neither the diagnosis of cancer nor its eradication any more secure. These two accounts
which prompted our research were matched by accounts provided by people during the formal
research project. In those accounts, we heard about people who felt much more certain about
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their identities as people diagnosed with cancer than our two friends: they had seen the cancer in
the MRI scans ordered by their physicians. They underwent surgery that removed parts of
themselves that were identified through tests to be examples of cancerous tissues. Although
things come into a focus that may well be all-too-clear, these moments of clarity are fleeting.
Many people we talked to organized their accounts so as to culminate in these moments of
clarity – moments when finally the problem became clear. But even then, what was to be done in
response to that problem was rarely, if ever, clear. Treatments had to be negotiated –
continuously. Trajectories had to be monitored – continuously. Identities had to be protected –
continuously. It is in this shifting terrain where the continuous, ongoing work of being a cancer
patient seems to be required that contestations about what is going on in cancer treatment arise.
Cancer is a dreaded disease. Its legitimacy as an illness makes diagnosis and care typically quite
accessible. Yet, we propose that there is much to contest about cancer and cancer care. In this
paper, we propose to demonstrate how we have begun to engage with this understanding and
attempt to give space to these places of contestation through descriptive accounts from people
who have had a diagnosis of cancer. We are going to explore this terrain, the shape and contours
of those times when people come in close proximity to versions of themselves, versions that are
largely generated by technological means. This work is not a piece of narrative analysis (cf.
Mathieson & Stam, 1995) although we recognize the value of that genre of inquiry. We are not
only interested in questions of how people facing such enormously challenging and lifethreatening issues actually manage to move through those difficulty times. What we are
primarily interested in is how the identity work of those people is understood by them and by
others as social processes (cf. Alvesson, 2001, Knights & Willmott, 1999) that could be analysed
for its strategic components – and how such work may be deployed to accomplish cancer care in
particular ways. We are interested in understanding how issues that are clearly contestable, pass
by smoothly, without question and certainly without contest. We are interested in exploring why
that might be.
Using the accounts of the people we spoke with, we are going to show how the work of
negotiating, monitoring and protecting proceeds, how that work entails the somewhat solitary
effort of patients as they manage the many contested spaces they encounter in their treatment for
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cancer – and how their work enables those engaged in the professional work of cancer care to
proceed, in almost all cases, as if cancer diagnosis and treatment were incontestable. In the
conference presentation, we will share with you our theorizing of these accounts as forms of
identity work fuelled by desires about living a life that are sculpted by skilled judgments of the
risks that may affect that life.
Negotiating treatment:
People’s stories of being diagnosed with cancer shared a basic structure: something out of the
ordinary was noticed either by themselves or by a physician in a routine check-up. Reassurances
were offered, either by the professional or by the person themselves. Often professionals are
attributed with saying things like “It’s likely nothing at all but we should just check to rule
anything out.” Then came a series of often very confused, unhelpful encounters, usually
involving discrete tests, some of which were painful, others not. But these encounters were all
conducted in a perfunctory manner and by people who did not share any information about the
meaning of the outcome of the test. Finally, an encounter occurred where the news about the
cancer was given.
Debbie: I went in there fully expecting to be told it wasn’t cancer, right, because
nobody could find it. It was a shock, for sure. But I was fine, you know, I talked
to the doctor for a couple of minutes, realized that he honestly didn’t have the
kind of information that I needed.
There is no doubt that this person describes a life-altering event. She went in expecting to be told
one thing based on previous information given to her and, instead, heard something very
different. As she learned quite quickly, the information she needs will not be given by the person
who has given her the news. Yet, she describes knowing very precisely what she needed at that
moment:
Debbie: what I wanted to know right at the point that he told me it was cancer is,
what happens next and how long is it going to take? What kind of timeframe is
involved here?
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Another person told us that she had received the initial diagnosis from a “temporary doctor,”
someone she describes as being very “cold.” When she finally sees her own doctor, he is
portrayed as not having heard the news through professional channels (as one might expect) but
rather, from the person herself:
Gerry: I went back to my normal GP … he is a family doctor. And he said to me
… I said to him, “I’ve got cancer.” And he said “Oh, my God!” And I thought,
“Well, this is not good. It’s not sounding good at all.” And I said, “What do you
think my chances are?” And he said, “I have no idea. It depends on your
attitude.”
Another person described a similar lack of confidence and commitment on the part of the
professionals providing the information to him:
Jeff: I just felt like they weren’t doing their homework. That they were
just...”Yeah. It’s this” they said “we don’t quite know.” You know?
The turn towards the professional ranks for advice following diagnosis was in all cases, a part of
these stories. Often, people described these encounters as very disappointing. Professionals were
portrayed, as above, as being as shocked as the people themselves at the diagnosis. Alternatively,
they are portrayed as having found something wrong but not being very sure what to do about it.
Many accounts included stories of people making numerous phone calls in an attempt to learn
what they were to do next.
Gerry: It was September, 1999. I didn’t know what on earth to do. And it was
only after 50 phone calls that I found out I had to go and see a surgeon. And
then I would have to go and see a radiologist. And then I would have to go and
see an oncologist. And, um, and all this...they were all in different spots around
the city. I had no idea how to get to them. I was absolutely terrified out of my
mind.
While this description of a terrifying experience was common, others described a much more
strategic approach to information management in support of their treatment decision-making:
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Debbie: I had to make a choice at that point. And I got as much information as I
could about the sentinel node biopsy as opposed to the axillary dissection. And
in the end, chose to have the sentinel biopsy.
Interviewer: Based on what?
Debbie: Based on, again, what I was being told by my healthcare professionals,
about the size of the tumour, the type of the cancer that they felt it was and that
in the end it would affect me less physically. And that’s what I was looking at. I
was trying, at that point, to look past the cancer to the outcome, right. “Teeny,
tiny little cancer, gonna be OK.” That’s what I kept telling myself. That’s what
kept being affirmed. So I wanted . . . I was looking past all of it and saying, OK,
when it’s all over and done with, I want to be back to my normal life as much as
possible. And again, like I said, I’m a very physical person. So I wanted to have
as little physical involvement as possible.
In this excerpt, Debbie describes in technical terms the basis of her decision to select one form of
treatment over another. At this early stage, she was moving forward on the basis of an
anticipated short-term treatment regime. She relied on the information provided to her by the
professionals: that the cancer was very tiny, hardly perceptible at all, and, because she valued her
physical appearance and abilities, Debbie describes her decision to have a more circumscribed
surgery to protect her physical capacities which she assumes she will be able to return to just as
soon as this temporary trouble is taken care of.
Others we interviewed described similar sorts of negotiations regarding their treatment:
Melanie: I had a choice of two different ones (treatments), the CEF and one
other one. And the other one I believe was more of a newer one. And it would
have, I think it would have been a shorter period. It was four months instead of
the six months. And we went home and we just didn’t know what we were going
to do. And both of them, you’re going to lose your hair. Yeah, right. I just
couldn’t picture myself with no hair. And, the CEF, you know, with every drug
there’s side effects. It’s possible you’ll have heart problems and possible of you
getting, I think, leukaemia. Or something. But we chose to take it anyways
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because it was tried and true, and it was something that was going to work and
the other one I felt was more of a herbal thing. But I’m not sure. I can’t
remember exactly what it was. But in my mind, it wasn’t strong enough to get
rid of the cancer.
In this excerpt, how ‘negotiation’ operates within this context is clearly conveyed. We do not
intend for that concept to be understood as a negotiation that is conducted between the person
and their health care professional. Instead, in both of these instances, information is described as
being conveyed by the professional in what seems to be relatively even terms: “You can either
take treatment A or treatment B. Treatment A will result in these things. Treatment B will result
in these other things. Both are equally effective.” This is not the terrain upon which a decision
can be negotiated. It is, perhaps, too flat – there is nothing to contest here. While A and B are
different, they result in the same. It makes no difference. This is the way in which messages from
health professionals are accounted for as being heard by people diagnosed with cancer.
However, as Melanie describes, a negotiation does take place. Of course, it does make a
difference – to her. The negotiation occurs with oneself and perhaps those most closely
associated with you. In this instance, Melanie describes taking the information conveyed by the
doctor home and, with her partner, working through the pros and cons of each treatment. For
example, both drugs are going to involve a loss of hair. Even though she could not picture herself
without hair, that item ended up being a non-negotiable as both treatments would result in hair
loss. Instead, for Melanie, it came down to a decision of strength: her impression was that one of
the drugs was “a herbal thing” and she did not believe it would be strong enough to get rid of the
cancer. So, despite the fact that the other drug might cause heart problems and might well result
in significant blood diseases, she negotiates on the basis of strength and decides to accept the
treatment with CEF.
As we spoke with people who had been through this experience, we encountered a range of
descriptions. Some people described being cast adrift by professionals who conveyed
information but failed to connect that information with implications for living through the
diagnosis and treatment and, in fact, beyond. This gap left people grasping for information from
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others they deemed to be expert in other ways to help them negotiate their way through the
decisions about treatment that were being asked of them.
Some people described receiving clear information to work with but that the context of relevance
for that information kept changing. As a result, people felt that their good decisions, negotiated
within the terms of their expectations about their life as it would now be expected to proceed,
were being undermined by the shifting context for decision-making.
The upshot here is that treatments are negotiated by people against a complicated calculation
about how they wish to live their lives. The negotiations rely on information from professionals
about both the nature of the cancer as well as the number and type of treatments available. They
are made in the context of life now with — but also outside of — cancer: can I imagine myself
without hair? Am I prepared to risk particular side effects? The information about the disease is
understood by people we spoke with as being quite provisional and open to frequent revision. In
this uncertain and shifting decision-making context, they described their need to maintain
significant vigilance over this uncertain and, for them, contestable decision-making context in
order to monitor their trajectory through the disease and the treatment.
Monitoring trajectories:
Let us return for a moment to the story told to us by Debbie. Debbie structures her story in such a
way that a more menacing outcome always seems to be just around the corner. Recall in a
transcribed segment used above the basis upon which Debbie makes her decision to have a
particular kind of surgery.
Debbie: Based on, again, what I was being told by my health care professionals,
about the size of the tumour, the type of the cancer…
Here, she indicates her decisions were based on what health care professionals told her.
However, in this story there is already a foreshadowing of being told different things at a later
time. And indeed, that is the case:
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Debbie: [The doctor] told my family that they thought they’d got it all. That it
was quite a lot bigger than they thought. There were actually two tumours side
by side. One was what’s called VCIS which is inside a milk duct and fairly
contained. It was five centimetres. Then there was another one beside it that was
two and a half centimetres. And it was an invasive cancer. So they removed that,
he took it . . . so that’s quite a sizeable piece of tissue that he took out. But he
took out a one and a half centimetre margin around both of them and sent it off
to pathology and told my family that as far as he could tell he’d got everything.
So, whereas Debbie describes making ‘good’ decisions, rational decisions, based on the
information that was given to her earlier on, in light of this new information, it may not have
been such a good idea to have the localized, conservative surgery. Having gone in to remove the
“teeny” tumour, the surgeon was apparently confronted with two tumours. One of these is larger
than what was anticipated but is “contained.” The other, smaller one, lying beside that larger,
contained tumour, is a tumour, half the size but “an invasive cancer.” Again the story
foreshadows more bad news ahead: “he took out a one and a half centimetre margin around both
of them and sent it off to pathology and told my family that as far as he could tell, he’d got
everything…”
Within a week the pathology report comes back and indeed the edges of the tissue that were
removed are not clear of cancerous tissue. More surgery will be required. Unlike before, now the
surgeon becomes more directive. The surgeon “was very firm this time on having the axillary
dissection with the tumours being the size they were.”
It was the health care professionals who originally told her that the cancer was very small.
Therefore, she conveys a sense of making a good decision to choose a more localized surgery. It
is only later when the professionals come back to tell her that the cancer is much larger and more
invasive than what they thought that she realizes her treatment choices also need to be revised.
Ultimately, Debbie describes thinking about her treatment in discrete periods of time:
Debbie: Each part of my treatment was to say, it’s temporary. OK. This is how
long this is going to take, right? Chemotherapy is going to take me four months.
OK, I might be horribly ill for four months, but it’s only four months. I can do
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that. If I have to I can put it on a calendar and mark it off day by day. If that’s
what I have to do. But I can do four months. This isn’t something that’s going to
be for the rest of my life. I have a friend with Parkinson’s disease. She’s going
to have that for the rest of her life. She’s going to get progressively worse for the
rest of her life. That’s not happening to me. What’s happening to me is I’m
going to be horribly ill for four months. Four months, OK, I can do four months.
Debbie started out negotiating her treatment against the long-term outcome she was hoping for,
that is, a return to normal strength and agility. However, at this stage in her treatment, her
horizon has shortened considerably. Now she is just seeking to get through the next four months.
She may be “horribly ill” for four months but she believes here that she is not going to get
progressively worse as is her friend diagnosed with Parkinson’s disease. This shortening of
horizons is significant. For us, it signals work on Debbie’s part to introduce a timeframe within
which the person can more ably negotiate success in terms of the treatment trajectory. The lack
of certainty introduced through the diagnostic process is simply too much to sustain a long-term
vision of the integrity of the self. As Debbie’s account suggests, integrity of the self can be
sustained for the duration of a regime of chemotherapy. If the chemotherapy is going to last four
months, the marker of success becomes “doing four months.” She has landed on terrain that she
has rendered less disputable, more predictable, if even for just a short period of time.
Protecting identities:
Drawing on interview material, we propose there is a case for understanding people’s responses
to a diagnosis of cancer in terms of negotiating a treatment regime that initially, at least, is made
in relation to a vision of a long-term outcome where the cancer is gone. Rejecting or disregarding
contemporary revisions of cancer as a chronic illness, the people we interviewed began their
process of treatment from a place that assumes cancer can indeed be beaten.
In the preceding section, we have seen how people’s accounts draw in on time and negotiating
provisional successes through the treatment process within shorter timeframes. We would like to
explore these further as signalling ways in which people protect their identity. But protection of
what or against what?
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Specifically, we argue that the identity work explored in this section represents a way of
protecting one’s identity as a person who desires a life beyond and outside of cancer. One of our
interviewees described the process of being diagnosed as feeling as though a wall came down –
perhaps a reference to the drawing in of the horizon within which she was going to do her
thinking and planning for a life beyond cancer:
Gerry: I was doing it on my own. Absolutely on my own. And and ... how I did
it I think I just ... a wall down, a sort of wall came down the minute I found out I
had cancer. And I said, “Okay. You’re now in a fight for your life. Everything
else has just got to go to the side and you had better just be focused.”
Gerry recalled coming across a note she had written years earlier to a friend who had received a
diagnosis of cancer in which she had said to her friend that if she, Gerry, was ever diagnosed
with cancer, she would refuse treatment. She expressed some surprise to realise that when she
was actually faced with the situation, she responded quite differently than she had predicted. As
noted above, she conceived of herself as being in a “fight for (her) life.” Even as she progressed
through a number of treatments including surgery, chemotherapy and radiation therapy, and
especially as each of those came to have very particular meaning for her, she maintained the
“focus” she describes above:
Gerry: the more I understood what oncology, what chemo meant, what radiation
... the more I realized I really was going to be fried. And virtually butchered.
But, I thought “I’ve got to do this. I’ve got to survive.”
It became clear to us that after people had committed to the negotiated treatment regime, their
horizons of expectations about beating the cancer narrowed radically. Rather than continuing to
rely on a vision of a future of freedom from cancer, the people we talked with began thinking in
terms of just getting through treatment. Here, the length of time for chemotherapy or radiation
becomes important in terms of stabilizing the timeframe within which a form of ‘survival’ has to
be monitored and maintained. The expectation within each of these treatment trajectories is that
at the end of it, the person can again begin to anticipate a future without cancer. But as we have
seen, just as the edges of a tumour may not be clean, nor may the edges of these treatment
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trajectories be all that clean. Second rounds of chemotherapy are ordered on the basis of the
‘failure’ of the person to respond to the treatment as expected. Experiences of extreme
exhaustion following a round of radiation therapy pull people who seek release from the disease
and its treatment down into what they describe as fatigue from which they wonder if they will
ever recover.
Another participant described a similarly difficult process of diagnosis and treatment – but with
very different results. For Sherry, an initial biopsy had shown evidence of breast cancer. A
decision was made that she would have a lumpectomy. The pathology report from that initial
surgical event revealed that only normal breast tissue had been removed – no cancerous tissue
was found:
Sherry: I read it and it says that they’ve removed normal breast tissue, healthy
normal breast tissue. And I never read pathology reports before but I thought,
“Well that’s strange. What happened to this cancer that was in me?”
This event left Sherry very confused. Indeed, in an effort to gain resolution to this significant
issue relating to her identity either as a person with cancer or one without cancer, she agreed to
have a second lumpectomy. This procedure, too, was treated by the cancer team as being
inconclusive, resulting in a second pathology report of “normal breast tissue.” Interestingly, at
the time we spoke with her, her medical treatment team were urging her to continue with
radiation and chemotherapy as though she were a person with breast cancer.
Interviewer: You mentioned something about radiation. So are you going, did
you go for radiation?
Sherry: Well, the protocol was always once the tissue was removed then they
can test it for ER, estrogen receptors and all these wonderful things, and to find
out what your protocol was. But if they don’t have the tissue, if they don’t have
the carcinoma in the tissue, then you’re again left in limbo. And that’s where
I’ve been all this time because they haven’t had the pathology that meets the
diagnosis . . . I’m no farther ahead. Like, what am I supposed to be doing? . . .
the Vancouver group are saying for me to just go straight on to tamoxifen and
the oncologist here is saying I should have radiation. And I said, well, what are
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we radiating? If you can’t take the tissue out, if the tumour isn’t out, what are
we, you know, is it in there, is it not in there? And he just, he says it’s protocol
with a lumpectomy. So every lumpectomy requires radiation … his only answer
to me was, the surgeon that spoke to me later, was that they feel or collectively
perhaps they feel that the tumour was shocked, and he actually used that word,
that the invasiveness of these two surgeries have killed off the cells. And that’s
where . . . they’ve just been shocked and they’re not there anymore.
Sherry’s situation is less uncommon that we might think. The reliance on a ‘protocol’ in the
absence of evidence of cancer is as disconcerting to her as it might well be to many who would
take science’s objectivist claims to heart. Sherry describes being left “in limbo.” Unlike those
whose diagnoses are made more securely, fostering a narrowing of the horizon to support
strategies for survival, Sherry’s identity as a cancer patient remains questionable. She is urged by
health care providers in Vancouver and in Victoria to proceed as though she has cancer but that
leaves her wondering what would they be radiating? What would the drugs be attacking? If the
tissue in her breast is “normal,” it would seem that identity protection would suggest that
radiation and drugs would be attacking her directly – if there is no cancer, the drugs and radiation
will not be attacking the ‘cancerous Sherry’ but the ‘normal Sherry.’
A great deal of protective work related to building and maintaining an identity as a person now
free of cancer is necessary. And much of this relies on the person having to separate in some way
from the treatment offered. For instance, while Sherry initially was diagnosed through a biopsy
as having breast cancer, future surgical samples revealed a lack of support for that original claim.
Despite the lack of support, her medical team continues to urge alignment with the original
treatment protocol. Sherry expresses surprise that what she understands to be specially designed
treatments, targeted to either irradiate a cancer out of existence or chemically annihilate it
through the introduction of drugs, would be recommended in spite of the facts. It is interesting to
us that she does not reject outright the suggestions made to her – instead, she wonders aloud
“what happened to this cancer that was in me?”
We would argue that Sherry’s reluctance to follow the advice of the medical experts arises out of
an assessment of the risks of proceeding with treatment. The risks here are not just those
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associated with choosing properly – although, given the range of options, one could be forgiven
for thinking that patients actually have a choice. The risks really seem to be about becoming
subject to the regimes implied by a cancer diagnosis. This topic is one we will explore briefly
below and take up more fully in the presentation. The presentation will be premised on an
understanding of the accounts as we have described them in the preceding sections. By way of
summary here, we are proposing that, having negotiated treatment against a preferred future, the
people we spoke with then described a need to draw in and closely monitor treatment
trajectories, all the while seeking ways of protecting a form of identity as someone who would
get through the physical and emotional assaults inherent in cancer treatment. It is our contention
that these research participants, each in their own way, recognized the riskiness of the treatments
they had chosen and that those risks are approached by people at a particular time in their
treatment trajectory – namely at the outset when their desire to turn this situation around, that is,
to turn their backs on the diagnosis – to deny its particularities – is very strong.
Diagnostic risks and desires
Jeff: So then they did tests, all these tests on me and they ran all this radiation
through my body and took pictures and MRI and all that stuff. And they could
see it that it was there. It was right in behind my eye. And it was growing real
fast, eh?
Interviewer: Is that right?
Jeff: Yeah. It came through the top of my mouth and went through my nose. It’s
just right in your face, eh? And I was on morphine like, I was just like spaced
out eh?
Interviewer: So the intent with the medical doctors was to do chemo. That was
their...after they discovered what it was…
Jeff: They diagnosed it but it was at Christmas time so they were shut down for
two weeks, so they couldn’t treat it. So they said “Take as much morphine as
you want. See you in two weeks.”
Jeff give an account of his experiences with his diagnosis of cancer that are graphic in their
horrifying outcomes. Contrast his account of seeing the cancer (“it was right there. It was right in
behind my eye. And it was growing real fast, eh?”) with the response of the treatment team based
on the timing of that diagnosis (“They diagnosed it but it was at Christmas time […] So they said
‘Take as much morphine as you want. See you in two weeks.’”). How can he reconcile the horror
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of seeing his cancer grow – literally, right in his face – with the bureaucratic response of his
caregivers to take narcotic pain medication and return in two weeks when the Centre re-opened
after the holiday break? In contrast to those within the government and health care establishment
who would claim that citizens need to become more responsible for their health (van Mossel,
2004), here Jeff is left trying to rationalize how his professional team could abandon him for two
weeks at such a significant time in his treatment trajectory.
One of the things that surprised us most in our research was that, despite the many and valid
reservations people had about the potential effectiveness or appropriateness of the diagnostic
process and the treatments entailed by such diagnoses, people agreed to undergo recommended
treatment, and then, in the face of the effects of that treatment, the vast majority of them
demonstrated a commitment to see the treatment through. For many people, the diagnosis phase
was recalled as a time of considerable shock, a terrible, memorable event that set in motion a
series of meetings with professionals. These meetings, like that described by Jeff above, were
often described as being well out of step with the enormity of what the person was feeling and
experiencing.
We are interested in exploring these interesting contradictions in relation to the risk literature
(Beck, 1992; Douglas, 1992; van Loon, 2002). It is evident that people diagnosed with cancer are
at risk of succumbing to the disease – and that may well explain why they approach places like
physician’s offices and cancer centres. On the evidence given by our research participants, it is
not sufficient to explain why, in the face of indifference, obfuscation and fear, they proceed to
engage in treatments that pose far greater and more imminent risks to them than the possibility of
a cancer that, for some people at least, acts in highly transient ways.
In this paper, we have begun a process of critical analysis of these accounts of diagnosis and
treatment. The sorts of accounts conveyed by people like Jeff illustrate to us that the people who
engage with the ‘expert system’ of medicine and contemporary cancer care are aware of and are
responding to multiple and diverse risks that not only the disease poses to them. The processes
described in the previous section (negotiating treatments, monitoring treatment trajectories and
protecting identities) can, together, be taken as a description of a set of dynamic responses
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engaged by people diagnosed with cancer who seek access to promised treatments for what they
take to be serious illnesses. They describe themselves as having to manage the overwhelming
and bewildering world that they meet there: a world that asks them to participate in decisionmaking in ways that suggest to them the need to work out a strategy in relation to their own care.
Once people have entered the cancer treatment ‘system’ however, it is in fact the limitations on
raising up possibilities around which choices might be made that becomes very difficult – if not
impossible – for patients to create. This represents our next step: to better understand the
processes of risk management that characterize these sorts of encounters and to suggest ways in
which the contentious spaces constituting cancer care might be enhanced to make that care more
relevant to the concerns of patients.
References:
Alvesson, Mats (2001). Knowledge work: ambiguity, image and identity. Human Relations, 54,
863-886.
Beck, Ulrich (1992). Risk Society: Towards a New Modernity. London: Sage Publications
Douglas, Mary (1992). Risk and Blame: Essays in cultural theory. London: Routledge.
Garfinkel, Harold (1967). Studies in ethnomethodology. Englewood Cliffs, NJ: Prentice Hall.
Knights, David and Hugh Willmott (1999). Management lives: power and identity in work
organizations. London: Sage.
Mathieson, Cynthia and Henderikus Stam (1995). Renegotiating identity: cancer narratives.
Sociology of Health and Illness, 17, 283-306.
Munro, Rolland (1996). Alignment and identity work: the study of accounts and accountability
(pp. 1 – 19). In R. Munro & J. Mouritsen (eds) Accountability: Power, Ethos and the
Technologies of Managing. London: Thomson International Business Press.
van Loon, Joost (2002). Risk and technological culture: towards a sociology of virulence.
London: Routledge.
van Mossel, Catherine (2004). Resistance in small spaces: citizen opposition to privatisation in
health care. Unpublished MA thesis, University of Victoria.
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