Sociology of Health & Illness Vol. 40 No. 4 2018 ISSN 0141-9889, pp.

639–653
doi: 10.1111/1467-9566.12671

Seeking certainty through narrative closure: men’s

stories of prostate cancer treatments in a state of
liminality
Ilkka Pietil€
a1,2, Raisa Jurva1, Hanna Ojala1 and
Teuvo Tammela3
1
Faculty of Social Sciences, University of Tampere, Tampere, Finland
2
Gerontology Research Center, University of Tampere, Tampere, Finland
3
Faculty of Medicine, University of Tampere, Tampere, Finland

Abstract Radical treatments of prostate cancer often lead to a pervasive liminal state that is
characterised by multiple uncertainties that relate both to a possible recurrence of
cancer and recovery from side effects, such as erectile and urinary dysfunctions.
Liminality can make it difficult for cancer patients to narrate their experiences, as
their stories lack a definite ending. After interviews with 22 Finnish men who had
undergone radical prostatectomy, we analysed how men produce closure in their
illness narratives. Focusing on the timelines of control visits or their anticipated
recovery from side effects, these interviewees sought provisional certainty within a
seemingly chaotic future. By locating erectile dysfunction in the wider context of a
life-course and interpreting their fading sexuality as a ‘natural’ consequence of
ageing, these men were adjusting to their post-operative lives. Our study further
shows that the inability to adjust personal experiences to positive culturally
available storylines that provide a chance for the narrative reconstruction of life,
can cause materialised negative consequences, such as relationship breakdowns.

Keywords: ageing, biographical disruption, masculinity, sexuality, side effects, uncertainty

Introduction

Prostate cancer is one of the most common cancers in industrialised countries although a sub-
stantial share of screen-detected cases remains low-risk cancers (Haas et al. 2008). Many men
prefer radical treatments even when there is no immediate medical reason, leading to over-
treatment of low-risk cancers (Hayes and Barry 2014). Prostate cancer treatments have com-
mon side effects, most often urinary and erectile dysfunctions that reduce their quality of life.
For many men, erectile dysfunction produces a fear of losing masculinity (Chapple and Zieb-
land 2002, Oliffe 2005). In addition, prostate cancer diagnosis often leads to anxiety and dis-
tress (Klotz 2012).
Along with side effects, anxiety, distress, and decreased life satisfaction can come from the
feelings of uncertainty that most patients experience after a cancer diagnosis. Even after treat-
ment, emotional uncertainty remains linked to both a recurrence of the disease and recovery
from treatment side effects (Shaha et al. 2008). These effects can be long lasting, even
© 2018 Foundation for the Sociology of Health & Illness.
Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA
640 Ilkka Pietil€a et al.

permanent, so it is difficult to provide a definite medical prognosis for a full recovery (Anan-
dadas et al. 2010). Prostate cancer treatment is a process with no definite ending. This liminal
state may continue for years, and the prolonged uncertainty is among the issues that make the
illness disrupt life in profound ways.
This article explores how men with prostate cancer deal with the multiple uncertainties of
living with cancer and recovering from it. We approach these coping strategies from a narra-
tive perspective, which underscores the centrality of their personal narratives on the experience
of illnesses (Bury 1982, Frank 1995), and how the liminal state of being a cancer survivor is
handled. In particular, our analysis focuses on how closure functions in these narratives to cre-
ate stability in situations where the illness process lacks definite ending and is characterised by
multiple uncertainties.

Uncertainties following prostate cancer treatments

Every disease has its own specific characteristics of uncertainty (Bruce et al. 2014) and these
uncertainties fluctuate across the disease trajectory (Shaha et al. 2008). In prostate cancer,
uncertainties emerge and largely prevail at the pre-treatment stage because of the variety of
treatment options. Previous research on men’s decision-making for prostate cancer has shown
that most men want to ‘do’ something about their cancer, and many prefer radical treatments
(Chapple and Ziebland 2002). The most important reason for choosing prostatectomy is the
belief that surgery is the most effective procedure (Anandadas et al. 2010). The active nature
of surgery produces a greater sense of control, security, and confidence (Mroz et al. 2013) and
decreases the feelings of uncertainty often felt directly after treatment.
However, survey studies have shown that a substantial group of prostate cancer survivors
experience cancer-related stress even 3–5 years after treatment (Eisenberg et al. 2015), and
that experiences of uncertainty are largely explained by fear of cancer recurrence (Shaha et al.
2008). The reported anxiety of men related to their illness is not in line with the statistics that
show that an increasing number of men diagnosed with prostate cancer do survive that cancer.
The 5-year relative survival rates for prostate cancer vary from around 80 to more than 90 per
cent in Western European countries and in the US (Allemani et al. 2015), including 93 per
cent in Finland in 2014 (Finnish Cancer Registry 2015). This incongruity between survival
statistics and fear experienced by men may be explained by notorious meanings and the cul-
tural stigma attached to cancer. As Wenger (2013: 389) explains, ‘cancer is stigmatized in its
association with undesired physical change, suffering, and death and is popularly discussed as
a deadly monolith’. Lay understanding does not necessarily differentiate between the different
types of cancer or distinguish localised prostate cancer from other, more lethal types of cancer
(Pietil€a et al. 2016).
Several studies have shown that many men regret their treatment decisions afterwards,
mainly because of the side effects (Hu et al. 2003). Uncertainties related to side effects last a
long time as the time of recovery is hard to predict. In a survey by Watson et al. (2016), it
was found that 9–24 months after treatment 82 per cent of men reported a moderate/big prob-
lem in sexual functioning and 15 per cent in urinary functioning. For some patients, these side
effects become permanent, and produce fear, shame, and experiences of stigma. The use of
diapers due to urinary leaking is humiliating for many men (Roth et al. 2008), and erectile
dysfunction makes a man question his masculinity (Oliffe 2005). Barbara Marshall (2007) has
pointed to a shift in the cultural narratives of ageing and sexuality that increasingly emphasise
the cultural ideal, even a cultural demand, for men to maintain sexual activeness in their mid-
dle and later lives. It is assumed that remaining sexually active is to remain young (Marshall
© 2018 Foundation for the Sociology of Health & Illness
 Seeking certainty through narrative closure 641

and Katz 2002), and sexual fitness is thus seen as part of successful ageing (Calasanti and
King 2005). The age of Viagra has also created new institutional structures and health promo-
tion discourses regarding men’s sexual health and constructed the ageing male body as a site
for biomedical intervention (Marshall 2007). In such a cultural atmosphere, losing potency is
not merely a case of physiological sexual functioning; it is increasingly seen as also a pro-
found matter related to masculine identity (Oliffe 2006).

Narrating uncertainties within the liminal state

The experience of uncertainty and living life in-between during bouts of illness is described as
liminality (Bruce et al. 2014). Originally based on the anthropologists van Gennep (1977
[1960]) and Turner’s (1982a [1967], 1982b [1969]) works, this paradoxical state refers to rites
of passage – communal transitions from one status to another – and especially its second phase
wherein a subject (passenger) is in a marginalised state without any status in the community.
Liminality describes a situation where an individual finds it difficult to classify the self in
socially recognised positions (Navon and Morag 2004). In that state, people are neither this nor
that, but maybe both (Turner 1982a [1967]: 99), and in terms of illness, they find it hard to
clearly describe whether they are healthy or sick and suffering or recovering from an illness.
Little et al. (1998) describe two stages of liminality during chronic illness: acute liminality
and sustained liminality. A patient enters acute liminality when hearing the news of a poten-
tially life-threatening illness and experiencing fear, dread, and uncertainty. Sustained liminality
follows the acute phase after a variable period of time. Along with the temporal dimensions,
liminality is viewed as the extent to which the illness affects different aspects of people’s lives.
In contrast to Little and his colleagues’ (1998) time-based formulation, Bruce et al. (2014) talk
about pervasive liminality: ‘Pervasive liminality points to stories that convey being in the
midst of what may otherwise be seen as discrete experiences that overlap and fluctuate time’
(Bruce et al. 2014: 38). Prostate cancer patients may experience pervasive liminality. After a
radical treatment programme, uncertainty touches on a wide range of physical and emotional
aspects in men’s lives, including sexual function, intimate relationships, social life, gender per-
formance, and overall planning for the future.
Liminality that arises from chronic illness interrupts a person’s normal life, described as bio-
graphical disruption (Bury 1982). Foundations and future directions in life are no longer self-
evident because life does not return to where it was before the chronic disease. Chronic illness
forces people to re-imagine their life stories and create narrative reconstruction (Williams
1984). Frank (1996) states that the narrative gives space to the sufferer to reflect on pain, frag-
ment the grief and unresolved anger about the disease and its treatments. Hyden (1997: 53)
concludes that the narrative offers ‘an opportunity to knit together the split ends of time, to
construct a new context and to fit the illness disruption into a temporal framework’. Being able
to narrate one’s illness experiences is essential for coping with the illness and its uncertainties.
Biographical disruption has been a dominant conceptual framework for studying the experi-
ences of chronic illness (Williams 2000). However, many studies have underscored the differ-
ences in effects that different chronic conditions have on people’s lives (see Williams and
Rees Jones 2017). Faircloth et al. (2004: 244) studied people’s experiences with stroke and
concluded that their lives were ‘not inevitably disrupted’. They introduced the concept of ‘bio-
graphical flow’, which emphasises the resources people still have in their lives to offset the
disrupting connotations of chronic illness. Studying motor neurone disease (MND), which usu-
ally leads to death in sometimes only a few months, Locock et al. (2009) contrasted biographi-
cal disruption with another concept, biographical abruption:
© 2018 Foundation for the Sociology of Health & Illness
642 Ilkka Pietil€a et al.

‘Whereas ‘disruption’ implies disturbance and unwelcome change, ‘abruption’ instead con-
veys a sudden ending, literally a ‘breaking off’. It encapsulates a commonly reported feeling
that the diagnosis was a ‘death sentence’, that life was in effect already over and that indi-
viduals had been denied a future’. (Locock et al. 2009: 1047.)

They further point out that in certain chronic illnesses ‘the story is already over’ after the
diagnosis, and there is no chance for narrative reconstruction.
The impacts that various chronic illnesses can have on people’s lives depend on the nature
of the illness which, in turn, structures the experiences and narratives of that illness. Prostate
cancer has disruptive effects on both because of the variety of uncertainties related to cancer
progression and recurrence and the side effects that often have major impacts on men’s every-
day lives. When experiencing such a chronic illness, biographical disruption and biographical
flow are not mutually exclusive, but they may co-exist. Previous research shows that despite
most prostate cancer patients experience of various uncertainties and fears, their social net-
works help them to cope with the cancer (Grunfeld et al. 2013).
To understand illness experiences during the liminal state, those experiences must be com-
municated via narrative resources, such as socially shared cultural storylines (Freeman 2000).
Narrative studies of health have mapped cultural storylines on chronic illness. Arthur Frank’s
(1995) classical typology of the illness narrative is echoed in later studies on the specifics of
illness narratives (Ezzy 2000). In a restitution narrative, the illness is an interruption to be
overcome, and the experience of illness is minimal; temporal orientation is toward the future.
The chaos narrative is the opposite. It portrays the person as a passive victim who has lost
control and has no future. In the quest narrative, the illness is accepted and interpreted as a
chance for positive transformations of both life and self.
Freeman (2000) uses the concept of narrative fit when describing the conformity of one’s
experiences to the normative ordering of life. Even though cultural storylines provide the com-
municative potential for experiences, these storylines do not determine the outcomes of those
experiences. Rather, culturally available narrative resources are used creatively, and personal
experiences are constantly negotiated against the storylines. A narrative approach enables an
analysis that brings to light the variation and complexities of the illness experience (Frank
1995). One of these variations relates to the structure of the narrative. The essential elements
of a narrative are the beginning, middle and end. However, when telling narratives, it is often
difficult for people to see what constitutes the ‘end’ of that narrative; therefore, narratives often
end with ‘temporal or emotional “closure”, or resolution, rather than with the last event in a
sequence’ (Shenhav 2015: 14). In illness narratives on prostate cancer, however, there is sel-
dom a definite end available for the narrators.
The goal of our research then is to analyse the narrative practices men use to make sense of
and articulate their liminal state after having radical prostate cancer treatments. Our analytical
focus is on the closure techniques that men use to manage uncertainties to create stability, as
well as on the ways socially shared cultural storylines become the basis for these men’s narra-
tive practices. We argue that in a liminal state, men find it just as important to achieve any
level of certainty as to seek a full recovery from the cancer and its side effects. The closures
in the illness narratives act to achieve that goal.

Materials and Methods

This study is based on open-ended semi-structured interviews (N = 22) with men who have
undergone radical treatments for prostate cancer. The men were recruited in Central Finland
© 2018 Foundation for the Sociology of Health & Illness
 Seeking certainty through narrative closure 643

as part of a larger study concerning quality of life after prostate cancer treatments. Partici-
pants were selected from patients coming for a one-year control visit at a University Hospi-
tal. The project leader (the fourth author) called the patients personally to invite them to
participate. The 22 men who accepted received information about the project, were con-
tacted by an interviewer, and signed an informed consent prior to the interview. The project
plan and its study procedures were approved by the Ethics Committee of the Hospital
District.
All interviewees had had a radical prostatectomy, and one had also received radiotherapy.
All reported side effects: eight men reported both urinary and erectile dysfunctions, 13
reported erectile dysfunction, and one reported urinary dysfunction only. Interviewee age range
was 56–71 (median 63 years); 15 men were retired and 7 still working. All were white and
heterosexual; 16 were either married or co-habitants; six were divorced or single; three inter-
viewees had no children. The men represented various educational and occupational back-
grounds.
The participants were interviewed during 2013–2014 by the third author and a female doc-
toral student. An interview guide was used flexibly to allow for free discussion of topics the
respondents considered relevant. The overall topic was quality of life and psycho-social well-
being, including the men’s experiences from diagnosis to the present, treatment decisions and
side effects, prostate cancer as part of their social relationships, recovery from cancer, and
experienced stigma. Most of the questions were formulated to encourage the telling of their
stories (‘would you like to describe what happened after you reached diagnosis’). Our intervie-
wees were generally inclined to talk about sensitive topics, such as erectile dysfunction.
Despite this, some of them appeared to be more fluent in describing their experiences, which
resulted in sometimes lengthy stories about their illness, whereas others’ responses were rela-
tively brief and less nuanced. All the interviews were digitally recorded, transcribed verbatim
by a professional transcription service, and validated by the study investigators to ensure accu-
rate and complete transcription.
Originally, the data were not gathered with a narrative analysis in mind; however, in the ini-
tial analysis, we paid attention to the centrality of narrative formulations in our interviewees’
attempts to make sense of the temporal nature of their everyday lives with illness. In this
study, we approached the interview data as narratives produced in an interview situation, based
on the socio-cultural conventions of storytelling and narrative resources available to a certain
subject and characterised as partial, alternate and contextual accounts of one’s life. Our pri-
mary interest then is not in whether these narratives are historically true or how authentically
they reflect the motives or emotions of the narrator. Instead, our analysis explores the practices
these men use to create closure in their illness narratives to cope with the uncertainties. In
identifying these closures in the interview data, the analysis drew on Carroll’s (2007) ideas of
closure as a matter of concluding rather than merely stopping or ceasing a story. Closure refers
to a sense of finality, as a story concludes: ‘it is the impression that exactly the point where
the work does end is just the right point’. (Carroll 2007: 2.) In the interviews, talked stories
were often incomplete, and in the context of a liminal state of cancer recovery, closure created
a concluding stage within a longer process whose definite end point was currently difficult or
impossible to foresee.
Reviewing the data, we focused on interviewees’ thoughts about their futures and descrip-
tions of their uncertainties and their future expectations of disease progression and recovery.
We paid particular attention to their concluding remarks when summarising their thoughts
about the future in particular interview episodes. We found two distinct, albeit intertwined,
types of closures we call temporal delimiting of an uncertain future and interpreting illness
within a wider context of life-course.
© 2018 Foundation for the Sociology of Health & Illness
644 Ilkka Pietil€a et al.

Temporal delimiting of an uncertain future

Previous research on men’s treatment choices for prostate cancer shows that many men prefer
surgery because it is thought to be the most effective procedure to get rid of the cancer and
return to a normal life (Anandadas et al. 2010, Pietil€a et al. 2016). Some of our interviewees
had very positive thoughts about their recovery before the surgery. Their main expectation was
that the surgery would give them a chance to overcome the disease once and for all.

Excerpt 1 (Alpo, 58 years)

From the moment when I received [diagnosis], it took a little bit more than two months
before I was operated on [. . .] I knew that I got an access to surgery, and all that, like [can-
cer] can be taken away, so I did not have time to develop any horror pictures about the
shortness of life and such. In a way, I felt positive about that. Like OK, I can get rid of it
very shortly. In the morning before the surgery, when a taxi took me to the hospital, I knew
that OK, I now have a cancer, but after a few hours, I won’t have the cancer anymore [. . .]
So I didn’t have any, sort of nasty feelings. It’s just that this is one of such processes that
are taken care of and then you continue your life [. . .] I’ve read that this prostate cancer is
so common among men, like many thousands [of new cases] every year. It’s not a bloody
different disease from others. If it’s detected at an early phase, and it’s caught and so on,
then a man just goes through that process and continues his life.

Alpo understood prostate cancer treatment as a straightforward project that would come to
an end with the operation. The disease was thought to be located in a clearly restricted
part of his body, which could be removed by the surgery. He thus describes having the
impression that after the operation, cancer would no longer be a part of his life. He por-
trays prostate cancer as a common disease among men and easy to eliminate when
detected early enough. Simultaneously, he constructs prostate cancer as a distinct form of
cancer, well detached from notorious meanings related to the general definition of cancer
as a ‘deadly monolith’ (Wenger 2013). The commonness of prostate cancer gives him
another reason to believe that it was ‘not a bloody different disease from others’. This
manner of narrating an experience comes close to what Martin and her colleagues (2014:
297) called the moving on narrative where cancer is conceptualised ‘as one of the many
disruptions that can occur in daily life ‘and characterised by full expectations that post-
treatment life will return to ‘normal’. Ezzy (2000) called similar narrative patterns a linear
restitution narrative.
It was clear, however, that after surgery our interviewees became aware that cancer does not
totally disappear after treatment. In the interviews, men pondered the possibility of cancer
recurrence, one factor that produced a liminal quality to their illness experience. Regular medi-
cal controls were referred to as managing that liminality, since they provided the men with
clear reference points in the future. In the next extract, these medical examinations become
landmarks that provide hope for clarity in the future. They helped the men cope with a present
clearly characterised by an uncertain future.

Excerpt 2 (Allan, 56 years)

Allan: It certainly eased [my concerns] when I had this control. But then again, when
you’re having the next check-up, when you approach the time [of the control
visit], you sort of start thinking slightly more about this and get nervous, like
what if . . .? But you just have to try to keep your head [in control] so that

© 2018 Foundation for the Sociology of Health & Illness

 Seeking certainty through narrative closure 645

you don’t think too much about this. But still you tend to have these
[thoughts] every time when the time approaches.
Interviewer: Yes, is it a bit like . . . even when the cancer is operated on and sort of
surgically removed, you still don’t really get rid of it ever, like totally?
Allan: Well, at least I have such a feeling that what if it’s still there twisting around.
It’s because, at least some people say, like probably quite a few have had
check-ups and controls, and everything has been fine. But then, at some point,
it’s suddenly like there’s nothing we can do about it anymore. And aren’t all
cancers usually a bit such that they can anyway easily recur? Is this prostate
cancer then much different even if it’s removed?

Medical controls do provide landmarks that have the potential of breaking the liminal state,
but they also contain the possibility of bad news about recurrence. The question what if? is
always present. For Allan, a medical control visit provides certainty for a while, but uncertain-
ties creep back before the next control. It is noteworthy that in Allan’s narrative, the spatialisa-
tion of disease differed from the previous data extract. In Alpo’s account, the cancer was
located in a clearly restricted part of the body, which was easy to remove. Allan was con-
cerned that the cancer may ‘twist around’ his body. He referred to people who believed they
had recovered before a medical control check-up that suddenly revealed the cancer had devel-
oped, leaving no hope.
This view exemplifies a different definition of cancer as an unpredictable disease, the precise
location of which is hard to determine. Allan does not see any difference between prostate
cancer and other cancers in its possible recurrence. This obviously affects the expectations for
recovery, as an unpredictable disease with no clear location in the body is hard to remove, and
produces a constant state of uncertainty. Although medical control visits offer anchor points
for orienting toward the future, they do not offer any guarantee of an eventual full disappear-
ance of the threat.
The uncertainties related to possible recurrence of cancer are difficult to cope with
because first an individual has no way to influence that recurrence or prevent it. Second,
he also has no chance to monitor its progression, as the body potentially will hide detri-
mental biological processes from the self. As Wenger (2013: 393) points out, post-treat-
ment uncertainties are based on the knowledge that the body is ‘no longer trustworthy’. In
both instances, these men position themselves primarily as objects of medical procedures
without any personal agency. From the perspective of narrating their illness, there is little
space for individual management of uncertainties. Thus, Allan underscores the importance
of keeping ‘his head’ under control so as to cope with uncertainties. However, a thread
going through his entire account is that although pervasive uncertainties are a feature of
his life, regular medical check-ups create order and split his uncertain future into more
controllable smaller parts.
While monitoring the possible recurrence of cancer is impossible in everyday life, the side
effects of treatments are a different matter. After treatment, patients are given instructions for
personal rehabilitation (such as physical activity), which are expected to have a positive effect
on recovery from the side effects. In addition, these conditions do not represent hidden entities
inside the body, as men can monitor the recovery process by the erectile or urinary dysfunc-
tions appearing in their daily lives. In medical consultations, timelines for recovery are set for
each patient, which gives these men temporal expectations for recovery. Many interviewees
considered the recovery from side effects within clearly set timeframes to be characterised by
more or less exact and precise deadlines.

© 2018 Foundation for the Sociology of Health & Illness

646 Ilkka Pietil€a et al.

Excerpt 3 (Ilpo, 57 years)

Interviewer: Have you talked with the doctor about how’s the recovery? [..]
Ilpo: In March, when I had this first year control, we talked about this. And the
doctor, at that point he said that the recovery of nerve paths occurs slowly,
just as I was told already before the surgery. But like this slowly, and at that
point he gave me sort of a one year’s extension for getting better. So let’s say
that at the turn of the year I start to have an idea about what’s the condition I
get stuck in. And then I get on with it.
Interviewer: Right.
Ilpo: Then you need to get by with what you’re given.

Ilpo’s expectations of recovery from erectile dysfunction are based on prognoses he got before
the surgery and again during the control visit. Although he was told recovery was a slow pro-
cess, Ilpo seems to be disappointed with the slowness of recovery (‘but like this slowly’). The
doctor set a new time limit for his recovery, ‘a one year’s extension’. Ilpo does not see any
chance for recovery after this extended time frame. Instead, in his story, it is a terminal point
for when his final condition will be determined and also what he thinks he will stay ‘stuck in’.
Wenger (2013) observed that uncertainty is often experienced when the body is recovering
more slowly than anticipated. Although a prognosis provides the odds, it is difficult to ‘build a
secure future on statistics’ (Wenger 2013: 392). However, present uncertainty becomes more
bearable when a temporal point of reference promises stability for an otherwise unstable
future. This temporal point of reference, authorised by the medical institution, acts as a closure
before an uncertain future, even though that point may either bring improvement or close
down all chances for further positive development. In Ilpo’s thinking about the future, the
one-year period still ahead of him will show him his final condition, and thus it represents a
precise ending time for his liminal state.
In some cases, our interviewees did not have any confidence in the timelines set for their
recovery, even when considerable improvement had already taken place.

Excerpt 4 (Jorma, 58 years)

Interviewer: What’s been your experience of this? Like have physiotherapy and this
electronic equipment, have they made a difference, or has there been a
change?
Jorma: Yes at beginning they did, ‘cause before I went to physiotherapy the leakage
was absolutely unbearable. But now it has got considerably better, since I
have been there [physiotherapy], like the continence and all. It’s not even
close to how it was at the beginning.
Interviewer: So it has started to get better, like little by little then?
Jorma: Hmm, yes. Too slowly.
Interviewer: Okay. Do you think it could fully recover with physiotherapy and all this?
Like, it has started to get better little by little. How do you think of this?
Jorma: Well it certainly can recover but . . . Today I don’t think about the future at
all.

In Jorma’s case, the recovery process proceeded after the treatments, and urinary continence
improved ‘considerably’. Although Jorma underscores this positive progress, he expresses dis-
appointment by stating the pace has been too slow for what he expected. When asked about
the future, Jorma refers to the possibility of full recovery, but he denies thinking about the
© 2018 Foundation for the Sociology of Health & Illness
 Seeking certainty through narrative closure 647

future ‘at all’. In Jorma’s account, there is very little reflection on possible continence
improvement, and his liminal state characterises his future with no further set expectations for
recovery. It seems Jorma’s disappointment regarding recovery leads him to avoid setting new
goals and timelines for any full recovery.
Our data included several temporal expressions the interviewees used to emphasise their
belief that recovery was not in their hands. Utterances as ‘time will show’ locate any changes
in a wider temporal context, and with a somewhat fatalistic tone, they also underscore the
non-agentic nature of these changes. Another expression, namely, ‘let’s take it one day at a
time’, also represents a closure, which creates a temporal order and continuity within an
obscure timeline of uncertainty, the limits of which are difficult to foresee. Living ‘one day at
a time’ divides an uncertain future into manageable time spans. The state of uncertainty is
accepted for a certain period of time, and within this timeframe, any further consideration of a
precarious future is neglected.

Interpreting illness within the wider life course

Disappointment with the recovery progress of side effects revolves around the expectations the
men had of that process. Several men expressed dissatisfaction with the medical staff for giv-
ing them too positive an outlook. The men hoped for a quick recovery from their erectile and
urinary dysfunctions, but their hopes often turned into disappointment when their recovery
was slower than expected.

Excerpt 5 (Ilpo, 57 years)

Ilpo: Before anything, my message to the doctors is that they shouldn’t promise too
much. So that it’s not, your life won’t be the same after [the surgery] as
before it. I was given a little bit too much hope but . . . Well, you learn to live
with this.
Interviewer: Yes, and it’s still that time will show what will happen. Like you still have
time for recovery.
Ilpo: Oh yes, there’s still some half of a year left for recovery and well. . .
Fortunately I’m not such a young lad in my twenties, who has life just before
him. Anyway I have, kids are made and live out there. And I’ve seen life and
experienced much, so that I can cross my fingers and appreciate how much
I’ve had.

The interviewee puts under scrutiny the expectations coming from the medical staff’s ‘pro-
mises’ regarding the recovery process. What causes disappointment is the incongruity between
his expectations for the recovery process and the actual situation he faced after the treatments.
In Excerpt 3 above, Ilpo considered his recovery in terms of timeframes set by his doctor. It is
therefore important to note that when the interviewer suggests to Ilpo the framework of tempo-
ral splitting for coping with side effects (‘you still have time for recovery’) Ilpo refuses it.
Instead, he takes a new perspective on the future by emphasising the importance of his adapta-
tion to a new situation, in which the body does not function the same way as before (‘you
learn to live with this’). This adaptation is effectively done by redefining the meaning of sexu-
ality by locating it in the wider context of the life course. In this version, sexuality is limited
to reproduction, and the fact that Ilpo has his children already ‘made’ is used as his justifica-
tion for the reduced significance of sexuality in his current life. In this wider context, the loss

© 2018 Foundation for the Sociology of Health & Illness

648 Ilkka Pietil€a et al.

of potency is interpreted as only a minor defeat in comparison with his generally good life
(see Oliffe 2006). This narrative style can be seen as an adjusted restitution narrative, where
the key to a ‘normal’ life is to admit and accept the changes that happen during life.
The next interview extract similarly shows how potency and male sexuality become re-con-
textualised in the narration.

Excerpt 6 (Mikael, 67 years)

Interviewer: If you think of sexuality, so which kind of a meaning it has, in your opinion,
in your life? If you sort of think about the past and present, which kind of a
meaning does it have in your life course in general?
Mikael: Erm . . . well we have . . . we have two girls who both have families. And like
. . . the older one has four children, and they are, you know, there are two
girls and then two boys who are twins. And you certainly get from them . . .
like quite enough sort of . . . And then the younger daughter, she has a son.
We see each other like very often, although we have some 40 kilometres
between us. Despite this we are often in touch [. . .] So I don’t see it anymore
as . . . Like back in the day, when we were younger, those issues were
certainly in order but it’s not anymore . . . I don’t see it that way, like as it is
any acute thing anymore. Now we already are in such a stage of life where
we are. And I think our family matters are okay.
Interviewer: Right. If you think about age and sexuality so how does the meaning of
sexuality change by ageing?
Mikael: Well it certainly diminishes, like just naturally, I would assume. And at least
what comes to us. [..] When we get this cancer treated, if possible, so I
consider that a lot more important thing than [sexuality]. Certainly everything
can cause you trouble if something doesn’t work anymore. But I don’t
consider it a top priority anymore [gives a short laugh]. And the wife doesn’t
consider it either, we have talked about this. There’s nothing, we don’t see it
that way. I think everything is fine.

Mikael’s account draws on the cultural storyline of men’s sexuality, in which a man’s potency
should be strong to have children. But when a man reaches a higher age and already has chil-
dren, potency loses its meaning. In this cultural storyline, potency has a course of life of its
own and simultaneously naturalises the changes of sexual life within marriage too. This narra-
tive fit (Freeman 2000) supports Mikael’s interpretation wherein the erectile dysfunctions that
occur after prostate cancer treatment are no longer a problem at his age; therefore, these prob-
lems with potency do not threaten his masculinity. Closure when locating the illness and its
side effects in a wider context of life-course draws on normalising potency loss using age.
Similar patterns were found in a study on stroke experiences (Faircloth et al. 2004) and in
another on osteoarthritis (Sanders et al. 2002) where the interviewees saw these conditions as
normal components of old age. Likewise, in our study, the interviewees used age as a resource
to make sense of cancer.
In Mikael’s account, narrative fit and his normalisation of side effects resulted in his accep-
tance of the situation. However, a narrative fit can also lead to dramatic results.

Excerpt 7 (Jorma, 58 years)

Interviewer: Before this surgery, did you have a partner or a relationship?
Jorma: I had, but I broke it up.

© 2018 Foundation for the Sociology of Health & Illness

 Seeking certainty through narrative closure 649

Interviewer: Okay, did you have this relationship for a long time or . . .?
Jorma: Many years [. . .] Approximately ten years.
Interviewer: Um when you said that you broke it up, well do you mean that you, like did
you sort of break it up after the surgery or before it? Or does it relate to this
in any way?
Jorma: Well . . . it was after I knew that I can have, or that I will end up in prostate
cancer surgery. Before it, I said [to her] like ‘Okay, now it’s, now it’s over’.
Interviewer: Umm, what was the reason? Why did you want to break up with her?
Jorma: It’s because after the surgery you’re no man anymore, and you won’t ever be.
Interviewer: Okay. Well how did your partner react when you told her about this?
Jorma: I didn’t give her time to explain anything. That’s that then.
Interviewer: Okay. Did you discuss this at all or did you ask her about her opinions, like
how she might take this issue?
Jorma: No. I didn’t.
Interviewer: So you had. . .
Jorma: It’s because I would already have guessed them anyway. She needs a partner
who is like a man and not any sort of . . . a worm.
Interviewer: Hmm. When you said that she needs someone who is a man, well . . . er, what
things do you attach to this masculinity?
Jorma: Well . . . namely . . . first of all sexual intercourse. All the rest, all the other
things we would still have on the rails, more or less.

In Jorma’s account, the context in which his erectile dysfunctions were experienced is different
from Mikael’s situation. First, Jorma is almost 10 years younger than Mikael, and so it is more
difficult to legitimise lost potency using the cultural storyline of a normal weakening of
potency. Secondly, in Jorma’s account, the cultural storyline that connects erection and sexual-
ity to having children was not activated. Instead, weakened potency was situated within a sex-
ually active relationship that had lasted for ten years. Third, Jorma does not align himself with
the alternative storylines on men’s (hetero)sexuality that are grounded in closeness and inti-
macy and that could enable reinterpreting the meaning of erection. For Jorma, erection before
anything else relates to having intercourse, which is then interpreted as being a man. There-
fore, erectile dysfunction is a loss of manhood. This explanation fits the cultural storyline of
masculinity, in which erection is essential for masculinity (Oliffe 2005). This kind of mas-
culinity is materialised in a heterosexual relationship, where a man must perform sexually with
an erection to fulfil the approved criteria for manhood. When this was not the case, Jorma
ended his relationship without any explanations.
This case is an extreme example of the narrative foreclosure (Freeman 2000: 90) concept
where the future is denied beforehand: ‘It is therefore the death of narrative desire, the shutting
down of the possibility of there ever emerging a different ending than the one envisioned
now’. The interpretation is similar to what Martin et al. (2014) calls a losing myself narrative,
which is based on the idea that life will never become better, and it is stuck in an ongoing
cycle of illness and lost bodily capabilities. In Jorma’s account, his illness caused a total loss
of himself as a man: ‘after the surgery you’re no man anymore, and you won’t ever be’. He
sees no other vision of himself but that of a ‘worm’. His inability to create any alternative ver-
sion of the story led him to make a concrete choice and end his relationship. Jorma’s descrip-
tion of his erectile dysfunction follows a similar storyline as his consideration of a recovery
from urinary incontinence (Excerpt 4 above). In both stories the future was denied beforehand
and he saw no chances to reconstruct a positive continuation of his life.

© 2018 Foundation for the Sociology of Health & Illness

650 Ilkka Pietil€a et al.

Discussion

David Armstrong (1995) pointed out that health does not always exist in a strict binary rela-
tionship to illness, but health can co-exist with illness. As Kagawa-Singer (1993) showed, hav-
ing cancer is not necessarily a contradiction with believing in oneself as essentially healthy.
On the other hand, going through cancer treatment does not necessarily imply that a person
will feel healthy afterwards. This feeling is first of all because the illness may recur, and thus
experiences of health and illness are centrally constituted by the notion of risk. Second, treat-
ment of illness may lead to conditions that hamper people’s everyday lives to the extent that
certain side effects of treatments are somewhat inseparable from the illness itself. Potentially
recurring illness and side effects thus become equal elements of the ongoing illness experi-
ence.
Living with multiple and permanent uncertainties of recovery can also be seen as a liminal
state wherein a person’s physical state and identity remain ambiguous; am I healthy or sick, a
normal person or a patient? The same ambiguity characterises men’s considerations of their
masculine identities, as they need to ponder to what extent they are still able to fulfil the nor-
mative expectations for masculinity when they suffer from possibly permanent erectile dys-
function. Not being able to reconstruct that masculine self may equally result in a liminal state
of living between being a ‘true man’ and a ‘worm’ as one of our interviewees put it.
Our interviewees’ illness narratives were characterised by uncertain futures and difficulty
determining a viable ending for their stories. Although recovery from prostate cancer and the
side effects of its treatments is a process with no definite ending, our analysis does show that
these interviewees were able to create convincing closures for their personal stories. We call
the two different types of closures appearing in our data temporal delimiting of an uncertain
future and interpreting illness within a wider context of life-course.
The first one was based on setting time limits for both controlling any possible disease pro-
gression and monitoring recovery from side effects. By delimiting a seemingly endless process
of illness into controllable periods, these men created a provisional certainty for the future that
they generally believe was uncertain and unpredictable. In this temporal management of can-
cer, their expectations of full recovery were replaced by time-bound goals that helped the
interviewees create order for their futures to avoid chaos. The temporal management of an
uncertain future particularly touched on possible recurrence of the disease. As the signs of a
possible progression of cancer are hard to detect by the patients themselves, regular control
visits to health care played a central role in their management of uncertainty. The men desire a
final confirmation that their cancer was beaten. Appointments with doctors thus represented, in
van Gennep’s (1977) terminology, an important transition rite, through which a person’s tran-
sition from the category of being sick to that of being a healthy person becomes socially
recognised. However, providing a patient with such a certainty of recovery from side effects is
impossible for doctors. In this respect, appointments with doctors were oriented towards timeli-
nes within which full recovery was still possible, although not guaranteed.
Another practice the interviewees utilised in their narratives on defeating the negative effects
of side effects, particularly erectile problems, was to locate their individual experiences in the
broader context of the life-course and adjust them to fit culturally shared storylines. Weakened
sexual functioning was reinterpreted as part of the normal life-course and re-conceptualised to
fit the ‘master narrative of decline’, which largely characterises the interpretations of ageing in
contemporary Western societies (Gullette 1997). Sexual prowess was thought to belong to
younger men’s lives and was downplayed in older men’s lives. By linking sexuality to repro-
duction, the interviewees created a narrative in which an older man has already fulfilled his
reproductive responsibility, and therefore, both sexual prowess and sexual desire were
© 2018 Foundation for the Sociology of Health & Illness
 Seeking certainty through narrative closure 651

trivialised. In this context, culturally shared narratives of ageing become important cultural
resources and let these men relocate themselves within various life-stages and reconstruct their
masculine identities. Taking on the status of an ‘older man’ creates a continuity of life and
biographical flow and provides these men with a secure social identity where any loss of sex-
ual prowess is no longer a sign of lost manhood. This kind of re-interpretation of sexuality in
an older man’s life may be taken to reflect a certain counter-discourse to the ‘forever func-
tional’ (Marshall and Katz 2002) discourse, which conceptualises erectile dysfunction as a
medical problem requiring therapeutic intervention at any stage of life.
Our analysis also shows that being able to narrate their illness experience in a way that fits
culturally shared storylines is essential for men being able to cope with the uncertainties, par-
ticularly regarding erectile dysfunction. Even when these men do not experience their lives
with the side effects as fully satisfying, these narrative fits and closures still allow them to
reconstruct a positive masculine identity. Some of our interviewees adopted both types of clo-
sures for narrating their illness (like Ilpo in Excerpts 3 and 5) whereas some others could not
reconstruct their lives in accordance with these narrative practices (like Jorma, Excerpts 4 and
7). Our conclusions here are limited by the small and homogeneous sample of men, and future
research is needed to explore how men from different ethnic and cultural backgrounds use var-
ious cultural storylines to make sense of their illness experience. A particular topic for future
research is how locally hegemonic ideals of masculinity are linked with men’s ways of narrat-
ing their experiences of prostate cancer.

Address for correspondence: Ilkka Pietil€

a, University of Tampere - Faculty of Social Sciences
L€a€
ak€
arinkatu 1 Tampere FI 33014, Finland. E-mail: ilkka.pietila@uta.fi

References

Allemani, C., Weir, H.K., Carreira, H., Harewood, R., et al. (2015) Global surveillance of cancer survival
1995–2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in
67 countries (CONCORD-2), Lancet, 385, 9972, 977–1010.
Anandadas, C.N., Clarke, N.W., Davidson, S.E., O’Reilly, P.H., et al. (2010) Early prostate cancer.
Which treatment do men prefer and why?, BJU International, 107, 11, 1762–68.
Armstrong, D. (1995) The rise of surveillance medicine, Sociology of Health & Illness, 17, 3, 393–404.
Bruce, A., Sheilds, L., Molzahn, A., Beuthin, R., et al. (2014) Stories of liminality: living with life-threa-
tening illness, Journal of Holistic Nursing, 32, 1, 35–43.
Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health & Illness, 4, 2, 167–82.
Calasanti, T. and King, N. (2005) Firming the floppy penis, Age, class, and gender relations in the lives
of old men, Men and Masculinities, 8, 1, 3–23.
Carroll, N. (2007) Narrative closure, Philosophical Studies, 135, 1, 1–15.
Chapple, A. and Ziebland, S. (2002) Prostate cancer: embodied experience and perceptions of masculin-
ity, Sociology of Health & Illness, 24, 6, 820–41.
Eisenberg, S.A., Kurita, K., Taylor-Ford, M., Agus, D.B., et al. (2015) Intolerance of uncertainty, cognitive
complaints, and cancer-related distress in prostate cancer survivors, Psycho-Oncology, 24, 2, 228–35.
Ezzy, D. (2000) Illness narratives, Time, hope and HIV, Social Science and Medicine, 50, 5, 605–17.
Faircloth, C.A., Boylstein, C., Rittman, M., Young, M.E., et al. (2004) Sudden illness and biographical
flow in narratives of stroke recovery, Sociology of Health & Illness, 26, 2, 242–61.
Finnish Cancer Registry (2015) Cancer statistics. Available at http://www.cancer.fi/@Bin/112195121/Rel
ative_survival_ratios_in_whole_country.pdf (Last accessed 15 December 2015).
Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago
Press.

© 2018 Foundation for the Sociology of Health & Illness

652 Ilkka Pietil€a et al.

Frank, A. (1996) Reconciliatory alchemy: Bodies, narratives, and power, Body and Society, 2, 3, 53–71.
Freeman, M. (2000) When the story’s over: narrative foreclosure and the possibility of self-renewal. In
Andrews, M., Sclatter, S., Squire, C. and Treader, A. (eds) Lines of Narrative. London: Routledge.
Grunfeld, E.A., Drudge-Coates, L., Rixon, L., Eaton, E., et al. (2013) ‘The only way I know how to live
is to work’: a qualitative study of work following treatment for prostate cancer, Health Psychology, 32,
1, 75–82.
Gullette, M.M. (1997) Declining to Decline: Cultural Combat and the Politics of Midlife. Charlottesville:
University Press of Virginia.
Haas, G.P., Delongchamps, N., Brawley, O.W., Wang, C.Y., et al. (2008) The worldwide epidemiology
of prostate cancer: perspectives from autopsy studies, Canadian Journal of Urology, 15, 1, 3866–71.
Hayes, J.H. and Barry, M.J. (2014) Screening for prostate cancer with the prostate-specific antigen test. a
review of current evidence, The Journal of the American Medical Association, 311, 11, 1143–9.
Hu, J.C., Kwan, L., Saigal, C.S. and Litwin, M.S. (2003) Regret in men treated for localized prostate
cancer, The Journal of Urology, 169, 6, 2279–83.
Hyden, L.-C. (1997) Illness and narrative, Sociology of Health & Illness, 19, 1, 48–69.
Kagawa-Singer, M. (1993) Redefining health: living with cancer, Social Science and Medicine, 37, 3,
295–304.
Klotz, L. (2012) Cancer overdiagnosis and overtreatment, Current Opinion in Urology, 22, 3, 203–9.
Little, M., Jordens, C.F.C., Paul, K., Montgomery, K., et al. (1998) Liminality: a major category of the
experience of cancer illness, Social Science and Medicine, 47, 10, 1485–94.
Locock, L., Ziebland, S. and Dumelow, C. (2009) Biographical disruption, abruption, and repair in the
context of Motor Neurone Disease, Sociology of Health & Illness, 31, 7, 1043–58.
Marshall, B.L. (2007) Climacteric redux? (Re)medicalizing the male menopause’, Men and Masculinities,
9, 4, 509–29.
Marshall, B.L. and Katz, S. (2002) Forever functional: sexual fitness and the ageing male body, Body
and Society, 8, 4, 43–70.
Martin, L.A., Moye, J., Street, R.L. Jr. and Naik, A.D. (2014) Reconceptualizing cancer survivorship
through veterans’ lived experiences, Journal of Psychosocial Oncology, 32, 3, 289–309.
Mroz, L.W., Oliffe, J.L. and Davison, B.J. (2013) Masculinities and patient perspectives of communica-
tion about active surveillance for prostate cancer, Health Psychology, 32, 1, 83–90.
Navon, L. and Morag, A. (2004) Liminality as biographical disruption: Unclassifiability following hor-
monal therapy for advanced prostate cancer, Social Science and Medicine, 58, 11, 2337–47.
Oliffe, J. (2005) Constructions of masculinity following prostatectomy-induced impotence, Social Science
and Medicine, 60, 10, 2249–59.
Oliffe, J. (2006) Embodied masculinity and androgen deprivation therapy, Sociology of Health & Illness,
28, 4, 410–32.
Pietil€a, I., Ojala, H., Helminen, S. and Tammela, T. (2016) Who has the guts to make this choice?: ideals
of masculinity in men’s justifications for their treatment decisions for localised prostate cancer, Interna-
tional Journal of Men’s Health, 15, 3, 267–82.
Roth, A.J., Weinberger, M.I. and Nelson, C.J. (2008) Prostate cancer: quality of life, psychosocial impli-
cations and treatment choices, Future Oncology, 4, 4, 561–8.
Sanders, C., Donovan, J. and Dieppe, P. (2002) The significance and consequences of having painful and
disabled joints in older age, Co-existing accounts of normal and disrupted biographies, Sociology of
Health & Illness, 24, 2, 227–53.
Shaha, M., Cox, C.L., Talman, K. and Kelly, D. (2008) Uncertainty in breast, prostate, and colorectal
cancer. Implications for supportive care, Journal of Nursing Scholarship, 40, 1, 60–7.
Shenhav, S.R. (2015) Analyzing Social Narratives. New York: Routledge.
Turner, V. (1982a [1967]) The Forest of Symbols. Aspects of Ndembu Ritual. Ithaca: Cornell University
Press.
Turner, V. (1982b [1969]) The Ritual Process. Structure and Anti-structure. New York: Adline Publish-
ing.
van Gennep, A. (1977 [1960]) The Rites of Passages. London: Routledge & Kegan Paul.

© 2018 Foundation for the Sociology of Health & Illness

 Seeking certainty through narrative closure 653

Watson, E. Shinkins, B., Frith, E., Neal, D., et al. (2016) Symptoms, unmet needs, psychological well-
being, and health status in prostate cancer survivors: Implications for redesigning follow-up, BJU Inter-
national, 117, 6B, E10–9.
Wenger, L.M. (2013) Living under assault, Men making sense of cancer, European Journal of Cancer
Care, 22, 3, 389–99.
Williams, G. (1984) The genesis of chronic illness, Narrative reconstruction, Sociology of Health &
Illness, 6, 2, 175–200.
Williams, G. and Rees Jones, I. (2017) Making sense: further studies of living with chronic illness,
Editorial, Sociology of Health & Illness, 39, 5, 653–8.
Williams, S.J. (2000) Chronic illness as biographical disruption or biographical disruption of chronic
illness? Reflections on a core concept, Sociology of Health & Illness, 22, 1, 40–67.

© 2018 Foundation for the Sociology of Health & Illness

This document is a scanned copy of a printed document. No warranty is given about the
accuracy of the copy. Users should refer to the original published version of the material.