1 Untellable tales and uncertain futures: The unfolding narratives of young 
2 adults with cancer 
3 Susie Pearceab*, Faith Gibsonc, Jeremy Wheland, Daniel Kellye 
4 aSchool of Nursing and Midwifery, University of Plymouth, Plymouth, UK; 
5 bTorbay and South Devon NHS Foundation Trust 
6  cCentre for Outcomes and Experience Research in Children’s Health, Illness and Disability 
7 (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust and School of 
8 Health Science, University of Surrey, Guilford, Surrey, UK. 
9 d Department of Oncology, University College London Hospitals NHS Foundation Trust, 
10 London UK 
11 e  School of Healthcare Sciences, Cardiff University, Cardiff, UK 
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13 Correspondence details for the *corresponding author  
14 Susie Pearce, Associate Professor Nursing (Research)  
15 Room 204, 10 Portland Villas, University of Plymouth, Drake Circus  
16 Plymouth,  Devon, PL4 8AA  
17 Email: Susie.pearce@plymouth.ac.uk 
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24 Untellable tales and uncertain futures: The unfolding narratives of young 
25 adults with cancer 
26  
27 Abstract 
28 In this paper we examine the use of creative methods for understanding the experience of 
29 young adults aged between 16 and 30 years over a year following a cancer diagnosis. 
30 Exploring the renegotiation of identity, the narrative, longitudinal research design of the 
31 study demonstrated the unfolding process of the narrative work between these participants 
32 and researcher.   We used a combination of visual, spoken and reflexive psychosocial 
33 approaches to understand emergent narratives, many of which do not always find 
34 symbolization in language. Our methodological approach focused on the difficult and 
35 sometimes ‘unspeakable’ nature of the young adults’ narratives, demonstrating the 
36 importance of different modes of communication in articulating complicated relations with 
37 uncertain futures. In this respect the links between narrative, social action and the imagining 
38 of possible futures is precarious. In this paper we explore how untellable issues were 
39 explored, and the challenges of doing so.  
40  
41 Key words 
42 Narrative, longitudinal, visual, psychosocial, cancer 
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49 Introduction 
50 You spend your life thinking about the past and worrying about the future, and being on 
51 autopilot. But what you do now determines what happens in the future’.  (Max aged 30, 
52 cancer diagnosis; Burkitts Lymphoma) 
53  
54 Ricoeur (1991) suggests that the self is best understood as unfolding through episodes which 
55 both express and constitute its nature. As such, an examined life is one understood through 
56 the stories that we tell about it (Ricoeur, 1991), and identity is a construction of the self, 
57 reflexively understood by individuals via biography and an ongoing process of narrative 
58 reconstruction (Giddens, 1991). The impact of a life-threatening illness, such as cancer, is 
59 likely to be especially disruptive during young adulthood, a time associated with intensive 
60 identity work (Harris, 1969; Erickson, 1968). This includes the assertion of independence 
61 from family and the development of capacity to manage separation, choice and independence. 
62 This biographical  phase can also demand the capacity to both depend on, but also to be 
63 depended on, by others and, importantly, the development and testing of intimate 
64 relationships (Wadell, 2002; Briggs, 2008).  
65 Kleinman (1988) suggests that illness narrative is the form through which the 
66 individual and their significant others can shape, and give coherence and voice to their 
67 suffering.  Narrative can also help create order, explore emotions, and allow for a search for 
68 meaning and connection with others (Riessman, 2008). Illnesses, particularly those that are 
69 chronic or life-threatening, are experiences that can contribute to disruption (Bury, 1982), 
70 with a need for biographical revision (Williams, 2000) and the making of new narratives.  
71 Mathieson and Stam (1995) found that storytelling during the disruption caused by a cancer 
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72 diagnosis, took on renewed urgency. This was seen in the quest for a new and renegotiated 
73 sense of personal identity when former meanings and assumptions no longer seemed relevant.  
74 In this paper narrative is bound closely to a sense of self and identity experienced  
75 across time.  Here we use examples from a longitudinal study with young adults diagnosed 
76 with cancer using visual, temporal and psychosocial narrative methods to provide insights 
77 into this particular situation and experience. The methods used sought to get close to these 
78 young adults’ subjective experiences, getting ‘underneath the surface’ (Clarke and Hoggett, 
79 2008, p.2) and accessing material that may be hard or sometimes impossible to articulate. The 
80 methods allowed the researchers to go beyond the text in order to capture something of the 
81 context and the practices that characterised it (Mischler, 1986). Cooper (2009) describes the 
82 use of psychosocial methods as practice-near research in evocative and multi-sensory terms: 
83 for example as methods that enable us to ‘hear the grass grow’ (Cooper, 2009, p.429) and 
84 ‘smell the real’ (Cooper, 2009, p.432).  The methodological breadth of this study supported 
85 understanding of the complexity of narrative and meaning across different time points and for 
86 linking narrative meaning to action. It is this process that will be examined in this paper using 
87 data extracts to illustrate the methodological contribution of visual, longitudinal and 
88 psychosocial methods. Before outlining the study itself, we begin by exploring more 
89 generally the contribution of such methods in narrative research. 
90 Visual and psychosocial methods in longitudinal, narrative research  
91  
92 Longitudinal or narrative research is relevant in applied research that seeks to explore 
93 human experience over time. Henwood and Shirani (2012, p1) suggest that 'everything 
94 people do is embedded and extended in time’.  Indeed, it can be argued that time and 
95 temporality are the ontological entities which shape all of the life course (Adam, 1995; 
96 Adam, 2004; Uprichard, 2012). Storytelling can illuminate shifting identities through life’s 
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97 transitions and is a valuable method to re-present experience (both by expression and 
98 reconstitution), and thus, as both Squire (2008) and Ricoeur (1984, 1991) suggest, to reveal 
99 the nuanced nature of transformation and change. Interviewing over time helps us to 
100 understand the iterative relationship between individual biography and its social context as 
101 the past is brought into line with a changing present, scaffolding an emergent future.  
102 Narrative is central to this process, operating as a hinge between multiple futures and a 
103 reinterpretable past (Uprichard, 2012).  
104 Although we may think of narrative as primarily verbal or written, it is possible to 
105 conceptualise narrative more holistically by including visual and non verbal dimensions 
106 (Riessmann, 2008). Harper has argued that ‘visual narrative’ provides a link between social 
107 science and the visual arts (Harper, 2002). This supports 'seeing' and embodied symbolic and 
108 contextual meaning within the research process (Radley and Taylor, 2003). Indeed, an 
109 expanded understanding of narrative is vital when we are interested in the communication of 
110 ‘difficult’ experiences that can be hard to put into words (Padfield, 2011).  More generally 
111 visual creative methods have been championed in research with children and young people 
112 (Weller, 2012; Barker and Smith, 2012; Robinson and Gillies, 2012): where they may 
113 struggle with or resist invitations to ‘explain’ themselves.  Importantly these kinds of 
114 methods have helped to challenge unequal power relations, and have facilitated 
115 communication for those who may otherwise be marginalised as well as those whose stories 
116 are hard to tell or to hear.   
117 Psychosocial research methods attempt to bridge inner and outer worlds, promoting 
118 the expression of subjective experience including material that has not yet found 
119 symbolisation in words or well-worn stories (Frosh and Barraister, 2008). Hollway and 
120 Jefferson refer to ‘a ‘thickening’ or enrichment of interpretative experience-based research 
121 (Hollway and Jefferson, 2013). This is associated with the willingness to engage with un-
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122 representable and unconscious meaning (Frosh, 2002); or when the words are too difficult to 
123 find.  
124 The use of free association as part of interviews and the analysis of interview material 
125 is a distinctive characteristic of the psychosocial research tradition. The assumption, 
126 borrowed from psychoanalysis, is that through free association we may secure  insight into a 
127 person’s Gestalt with access to their concerns which may not be accessable with more 
128 traditional methods  (Hollway and Jefferson, 2013). Other tools of psychoanalysis used in 
129 psychosocial research, include ideas of containment (Bion, 1962) defence, transference and 
130 countertransference (Klein, 1952). There has been a strong debate as to how and whether 
131 such clinical ideas can find a place in social research. For Frosh and Barraister (2008) these 
132 are ‘tools’ for tentative understandings that may involve a reflexivity about the research 
133 process and the nature of the researcher /researched relationship. 
134 Methods and data  
135  
136 In this paper we present an account of using visual, longitudinal and psychosocial 
137 methods in the exploration of cancer with a group of young adults with cancer aged between 
138 16 and 30 (Pearce et al., 2019). They were all recently diagnosed with either lymphoma, 
139 leukaemia or bone cancer, and data were collected between April 2011 and December 2012.  
140 We recruited participants from one United Kingdom Cancer Centre for the care of adults, 
141 adolescents and young adults with cancer. Over the period of recruitment, 59 young adults 
142 were eligible, with 43 being approached. Eighteen of these consented to participate in the 
143 study, 14 of whom were male. Forty- interviews averaging 69 minutes in length were 
144 conducted, eight of the participants took part in three interviews over a year, with six 
145 participants taking part in two. 
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146 Longitudinal data collection spanned a period of 12 months. This was important when 
147 considering the temporal rhythms of young adulthood and the progression of cancer and its 
148 sometimes lengthy treatment.  Indeed, the first year after diagnosis has been suggested to be 
149 the most difficult (Kwak et al., 2013).  Methods included in-depth, free association narrative 
150 interviews at three points in time, photographs taken by participants were also discussed 
151 through a process of photo elicitation in the second and third interview; and extensive 
152 reflexive field notes were collected.  The interviews became a process of joint construction 
153 between narrative and meaning (Mischler, 1986), and were participant-led, with some 
154 interview probes guiding the interaction (Hollway and Jefferson, 2013). This way of 
155 interviewing has also been termed a form of subjectivity in a historical context (Wengraf, 
156 2009), with a focus on subjective experience across the individual, their context and history.  
157 Visual data were collected  by the participants in the study using mobile phone 
158 cameras. A framework was provided for the taking of pictures or events that reflected the 
159 impact of cancer on the person’s sense of self, and on their daily lives, although the focus was 
160 not intended to be overly restrictive.  Photographs were then explored during the second and 
161 third interviews in different ways; first, by including them in the development of a 
162 chronology of events; second as a way of developing any categories that were meaningful for 
163 the young person; and thirdly by inviting the participants to describe and discuss their 
164 favourite and least favourite images.  The discussion of why a photograph was taken was 
165 often more meaningful than the content itself, which in itself could sometimes be hard to 
166 appreciate (Barker and Smith, 2012). The absence of photographs and discussion of events 
167 where photographs had not been taken were also revealing.  For example, photographs were 
168 often not taken on days the participants felt at their worst physically or mentally, and this 
169 opened up opportunities to explore how such times might escape narration.   Participants who 
170 did not take photographs also discussed images they might have taken and sometimes 
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171 discussed the reasons for their decision.  Thus, the discussion of visual context was part of 
172 most interviews to some degree.   
173  Conducting research during cancer therapy means that the research itself can become 
174 part of the treatment experience. Some of the participants appeared to use the research 
175 relationship as a containing space where the researcher helped them to process their distress, 
176 thus making it more tolerable (Bion, 1962). As part of a commitment to safe psychosocial 
177 methods, the provision of both a boundaried space and assurance in facing the potential for 
178 inadvertent harm or exploitation (Malcolm, 2012), were firmly embedded in the study. The 
179 researcher had regular supervision with a psychotherapist, wrote exhaustive detailed reflexive 
180 notes and became a member of psychosocial research group for peer support and collective 
181 analysis.  These methods supported psychoanalytic forms of noticing oneself, being aware of 
182 and separating discomfort to that of the participant and of staying engaged emotionally 
183 (Elliott et al., 2012).  This in turn promoted reflexivity, transparency, trustworthiness and the 
184 ability to pick up the cues of whether communication, contact or data collection was or was 
185 not appropriate at a particular time (Pearce et al, .2019).  
186 Ethical approval for conducting the study was obtained in advance (REC Reference 
187 12/LO/0183). Written consent was sought before the first interview, consent was then 
188 processual and relational, bound within an ethics of personhood and the context of building a 
189 relationship of trust and rapport between participant and researcher (Dewing, 2002; Holland 
190 et al., 2006). Consent for the use of images took place on an individual basis from the 
191 participants and from anyone else captured in the photograph.  
192 A balance was found between assurances of confidentiality and the intimacy produced 
193 by combining visual, longitudinal and visual methods. Giving a voice, going beyond text with 
194 visual, temporal and psychosocial sources created a sense of fragility in the anonymization of 
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195 identities (Thomson and Mcleod, 2015; Taylor 2015).  Reflexive and flexible ethical 
196 engagement, together with a rigorous methodological process (Wiles et al., 2008; Taylor 
197 2015), were essential to manage this process. The challenges for maintaining anonymity 
198 during dissemination are critical. In this paper revealing images of individuals have not been 
199 used, with pseudonyms used in place of real names.    
200 Researching with seriously ill participants amplifies the ethical commitment to do no 
201 harm. Participants were supported if at any time they felt they would like to withdraw from 
202 the study.  Two participants died before their third interview. Others found it hard to find a 
203 good time for the second or third interview. This could have been due to illness but it could 
204 also have been due to recovery and the challenges of returning to ‘normal’ life.  Others may 
205 have withdrawn when the costs of participating began to outweigh the benefits, often this 
206 happened at the end of treatment. The researcher met the participants informally once more 
207 after the final interview if they were visiting the cancer clinic. If this was not possible a text 
208 message was sent; to ensure that their contribution was recognised and to mark the end of the 
209 project (De Laine, 2000). 
210  
211 Data analysis involved a holistic analysis of each individual’s experience across time 
212 as well as connections between the accounts of different participants. The focus was initially 
213 on the eight participants who had taken part in all three interviews. The data for each 
214 participant were analysed intensively, with themes and changes mapped resulting in in a ‘case 
215 history’ for each participant where different kinds of data were synthesised. Visual images 
216 were not used in isolation but analysed against their discussion in the narrative text (Wiles et 
217 al., 2008).  Case histories were then, as Thomson (2007) describes, brought ‘into 
218 conversation’ so that commonalities, differences and that higher order themes could be 
219 identified across the sample. Throughout, it was important to stay close to the data, rather 
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220 than searching for preconceived categories (Hollway and Jefferson, 2013) and allowing for 
221 individual motifs meanings and ‘gestalt’ to emerge. In keeping with a psychosocial approach 
222 to analysis, sections of anonymized data which the researcher was struggling to interpret, 
223 were taken to the psychosocial research group which used free association techniques to 
224 suggest insights and possible interpretations. This use of group analysis has been called ‘the 
225 power of the third’ (Clarke and Hoggett, 2008); or ‘thinking minds’ (Price and Cooper, 2008, 
226 p. 64). It follows the assumption that challenging and/unconscious material may need more 
227 than one mind to think about its meaning. In this study the psychosocial group became a 
228 place to discuss ethical and methodological issues as well as facilitating the analysis of the 
229 data (Thomson, 2012; Clarke and Hoggett, 2008).  
230 The longitudinal nature of the study also allowed a series of narratives to emerge, 
231 including the synergies and dissonances between these, and communicated much about the 
232 young adults’ inner worlds. A psychosocial framework which allows for the self, the psyche, 
233 the social and the physical body (Pearce et al., 2019) as well as explicit and implicit modes of 
234 communication can help facilitate understanding of narratives over time (Craib, 2004, 
235 Bradbury and Day Sclater, 2004 Thomson, 2012).  For all those involved in this study, there 
236 was a significant period of embodied, emotional, social and biographical disruption; and for 
237 most, particularly for those for whom cure was unlikely, there was the monumental task of 
238 making sense of their situation.  Visual, psychosocial and longitudinal methods were intrinsic 
239 in capturing and understanding this process and our insights of it. 
240  It is probably unsurprising that longitudinal qualitative research in such a highly 
241 sensitive area, and with a population often described as ‘hard to recruit’, was both 
242 challenging and time consuming. However, as Patrick (2012) suggests, extended time in the 
243 field and use of reflexive and creative methods provided a wealth of opportunities for the 
244 building of trust and rapport.  Maintaining contact in a longitudinal design was essential, and 
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245 finding the ‘good moments’ for conversations had to be judged sensitively over time. This 
246 involved face to face communication where ever possible (Patrick, 2012), as well as the 
247 sending of text messages.  When the researcher was in the field she would often ‘bump’ into 
248 participants and share informal conversations. In situations where the researcher had not seen 
249 the participant for some time it was important to talk with health care professionals to ensure 
250 it was good time to resume contact. Indeed, the uncertain nature of cancer made these touch 
251 points with professionals essential. The results of this process is highlighted in the 
252 participant’s data presented in the sections below.   
253 The longitudinal, time and experience 
254 Longitudinal studies with young adults have characterized this life stage as involving ‘critical 
255 moments’ where important changes give rise to new narratives and identifications (Thomson 
256 et al., 2004). This was also true of the young adults in this study during their treatment for cancer. 
257 These crticial moments occurred within the cancer and treatment trajectory; the biography of 
258 young adulthood; and reflected the time during which these data were collected.  Narrative 
259 data collected over time facilitated reconstitution, linking the past present and future. This 
260 supported narrative as a way of constructing multiple and unforeseeable futures, helping to 
261 conceptualise the present and re-interpret the past (Uprichard, 2012).   
262 An unforeseeable future 
263 Paul, diagnosed with a metastatic Ewing’s sarcoma, focused on going travelling 
264 during his first year of treatment. This was a projected future which would involve him 
265 regaining his freedom and independence – which in developmental terms has been described 
266 by Margot Wadell as being ready to ‘take off and let go’ (Waddell, 2000, p. 177).  These 
267 plans were recounted, and adapted as his cancer treatment and situation changed:  
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268 I want to get a camper van you know, just go. I think maybe it is just a way of 
269 escaping. . . I just want to get out and have a bit of peace, from treatments and seeing 
270 doctors and even my mum.  
271 Although Paul was preoccupied with planning for his future, his narrative also communicated 
272 an ambiguity rooted in an awareness of the gravity of his situation and a hope that the disease 
273 would be controlled.  The methods of this study supported the exploration of  these tensions, 
274 here voiced by Paul:  
275  At the moment the doctors have left it like, you know, ‘We’re not expecting to get rid 
276 of it all with the chemotherapy but we are just going to keep an eye on it’. Like it 
277 could, you know, and I always look at the positives.  It could just stay stagnant and 
278 stay there and not do anything for the rest of my life sort of thing.   
279 During the study Paul explained that he was enjoying life more than he ever had 
280 before his diagnosis, communicating a sense of regret about choices made previously. It is 
281 also possible to understand his pleasure in the present as amplified by an emergent mourning 
282 of a lost future: 
283 I wish I’d have done my Physics and the universe and something.  But I always just 
284 wanted to get money. . . I still might, I might go like Open Uni.. At least I’d get into 
285 something that I really do want to do sort of thing.  
286 At the end of his year of treatment, Paul went to Amsterdam for five days on his own. This 
287 was a vastly reduced version of the trip to Europe that he had shared at the start of the study, 
288 yet it was an ambition expressed and fulfilled. Meaning had been found in future-orientated 
289 developmental goals which were partially fulfilled. The progression of disease, however, 
290 meant that new goals were harder to find.  
291  
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292 Narrative when futures may end 
293 Longitudinal methods have been used with elderly populations (Bornat & Blytheway, 
294 2008) and are attuned to both the passage of life and its finality. Yet with these young adults, 
295 the prospect that life may end during the study was hard to articulate, and make sense of, for 
296 both the researcher and those being researched. Participants talked about the death of others, 
297 perhaps as a way of articulating and making sense of the possibility of their own. This was a 
298 preparation for a narrated future with an end point, and a moving between the temporal 
299 horizons of past, present and future.  Simon and Richard, for example, both talked about dead 
300 loved ones (through a medium, or in dreams). This suggested the importance of creating a 
301 narrative space beyond death. Of course, participating in this study itself contributed to a 
302 sense of legacy and the leaving behind of a story. Hearing about continuity of life after the 
303 finality of death for others seemed to be immensely reassuring and became a vehicle through 
304 which to talk and think about their futures.   
305 Simon, who had been diagnosed with a rare soft tissue sarcoma, discussed the death 
306 of a close friend from the ward: 
307 . . . they said he couldn’t really feel any pain or anythin. . I was sort of, ‘Okay, that’s 
308 something I can hold on to.’ …the main thing I can really think of, was, ‘Am I going to wake 
309 up tomorrow morning?’ . . . I’d sort of go to sleep and I’d lie in bed and I’d go, ‘Is this it?’  
310    Within the containment of an interview space that continued over time, some 
311 participants were able to experience and communicate a sense of profound sadness and loss. 
312 Andrew, who was diagnosed with metastatic Ewing’s sarcoma at the point of graduation from 
313 his university degree as a mature student,  regretted that he had focused so much on the 
314 future: ‘. . I just think I should have enjoyed myself a bit more’.   By the second interview, he 
315 was able to talk openly of his prognosis and time-limited future:  
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316 Well I think I’ve sort of come to terms with things now, so there’s nothing you can do. 
317 I think everyone’s just hoping it won’t happen. But when it’s happening to you, you 
318 know the eventuality. 
319 The sense of sadness and loss was also deeply felt within the interview space by the 
320 researcher. It was powerful to be a part of the participant’s exploration of the essence of 
321 meaning of life and attempts to navigate an emotional and existential landscape. The 
322 emotional transference was often deeply uncomfortable and the writing of researcher 
323 thoughts and reflections were essential to manage emotional sequelae and make sense of 
324 what was taking place. This process of writing sometimes took days and if, at times, it was 
325 delayed or evaded it eventually became vital and unavoidable.  
326  
327  The reconstituted narrative 
328  
329 Bruner suggests that we become who we are by telling stories about our lives (Bruner, 1990). 
330 An affordance of the longitudinal design of this study was the opportunity to see this process 
331 in action during an intense challenge to biography. Jason, illustrated the potential for 
332 reconstituting the self through a process of narrative reflection, reconstitution and action. 
333 Following a diagnosis of osteosarcoma Jason faced the amputation of his leg. Initially he had 
334 protected himself from communicating with the cancer world that he now found himself in, 
335 and slept most of the time with a hat over his head, ‘I shut it out as it were. So it’s not that 
336 bad’. 
337 Near the end of each interview Jason was able to verbalise about more difficult subjects, 
338 including the prospect that his leg might be amputated: ‘Well the terribly wishful part of me 
339 would like it to be as it was before I was diagnosed.’    
340  In one interview, Jason reflected on images and a photograph that, looking back, he  
341 might have taken.  Identifying this image seemed to help him move him towards the 
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342 untellable, beyond the defences of humour and stoicism which characterised his spoken 
343 narrative.   This image was of the snow he had seen from the hospital window. He reflected 
344 on happy times as a child in the snow which led to reflection on how things were for him 
345 now: ‘It’s a bit dull really, my life.  Yes, I wake up and go to sleep’. He then described the 
346 present situation as overwhelmingly depressing: ‘A bleak unending nothingness’. Later in 
347 field notes the researcher recorded: 
348 Jason found it hard to leave the interview space and I had to bring it to a close, I 
349 knew he had a meeting with the surgeon. Later when checking he was OK post interview,  
350 Jason was not able to speak, he communicated through the  fear and anguish in his eyes a 
351 sense of the sheer enormity of  what was going to happen. This was something he was not 
352 able to directly verbalise in the interview. 
353 In his last interview some months after his amputation, and on the last day of his 
354 treatment, a buoyant Jason spent time looking back on the whole experience from his cancer 
355 diagnosis. In a different place emotionally to the previous interviews he said:  
356 At the beginning, you know, fourteen cycles of chemotherapy was, it’s the longest 
357 thing in the world.  It still feels like the longest thing ever, but it’s actually gone quite 
358 smoothly and quite quickly.   
359 He seemed resolved that he would not be able to return to his career. Yet, this was now 
360 framed more positively, with a new integration of the past and the future. A new sense of 
361 purpose in returning to a high level of mobility was present; ‘I can’t run, although it’s 
362 technically possible. It’s something I intend to pursue’.  
363  
364 The Visual, image and metaphor 
365  
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366 Innovative methods for understanding difficult and complex individual human experience 
367 may challenge the dominant medical and social discourses (Bury, 2001) around cancer and death. 
368 Simon found comfort in communicating with a bigger audience during his illness, making the 
369 most of opportunities to be public about his diagnosis and situation: 
370 Definitely I’ve got just stories to tell. Yes, and seeing people’s reactions to it sort of 
371 builds my confidence back up after being knocked down by having to actually have 
372 the experience.   
373 However, by the second and third interview Simon was turning away from his external 
374 audience, wishing rather to explore his inner world. He used image and metaphor creatively 
375 to make sense of the growing cancer inside him: ‘… you could almost describe it very much 
376 like ivy growing up a wall. . . And it sort of creeps up. . . And now that’s shrunk right back’.   
377 The image in the metaphor was elaborated, providing a way to capture uncertainty 
378 and to envisage treatment paths.  
379 And the surgery one seems very straight. .  The chemo one is also very straight.  But 
380 it’s a bit hard to go through.  It’s like lots of brambles and stuff, a bit overgrown. But 
381 I can always cross the path to surgery . . . so that’s always good. It’s like they haven’t 
382 ever like cut that path off and said, ‘No you’ve missed that one, that’s now not there.’  
383 It’s still there. I sort of like to visualise it in that way. 
384             By displacing a definitive ending, hope endured, allowing for the endurance of 
385 discontinuity and trauma (Grotstein, 1981). Simon also used storytelling as a way to organise 
386 his thoughts and feelings and gain reassurance. As Grotstein suggests the text can then 
387 become a ‘visual transformation of events in the internal world’ (p.371). The discussion of 
388 images, symbol and metaphor helped us to explore what ‘lies under the surface’ This can be 
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389 described as an existence of ‘shared multi layered collage of images in the human 
390 unconscious’ which is a route into our strongest emotions and affect (Manley, 2008, p. 96).  
391   Creative and visual methods allowed the opportunities for both flexibility and 
392 autonomy (Wang, 1999), and provided a vehicle for young people to tell their story in a way 
393 of their own choosing. The taking of photographs became a ‘tool’ for collaboration; and 
394 allowed active participant-led data collection and interpretation (Frith and Harcourt, 2007; 
395 Lorenz, 2011; Pink, 2001). Photography and talking about pictures gave participants a 
396 different medium through which to express feelings and ideas and through which to 
397 communicate the impact of illness and treatment (Williams, 1987; Hanna and Jacobs, 1993). 
398 Photographs were taken by those who already were used to taking them or for whom it might 
399 support their storytelling. For others this was not perceived as useful or manageable although 
400 images, actual or possible, were discussed by all of the participants to some extent. 
401   Paul, for example, took many photographs, and this seemed to help him reflect, to 
402 facilitate recall, to connect to the past and the future and ultimately portray his new sense of 
403 self (Wang, 1999; Yi et al., 2010; Yi et al., 2016). Sharing his private experiences through 
404 photographs enabled Paul to control the interview and to mediate what Rollins (2005, p.220) 
405 has termed the ‘researcher gaze’; providing a safe focus, and at times a distraction from a 
406 focus on his cancer prognosis that was difficult to share or tell.   
407 Some participants took many photographs over Christmas, providing a window onto 
408 family life. These photographs helped sustain a sense of continuity with the past during a 
409 time of intense change.  Photographs of Christmas and family also represented something 
410 which was nurturing to retrieve from the past and to continue as a goal for the future.  For 
411 Simon, Christmas was at a time when  he was still adjusting to his diagnosis and first cancer 
412 treatments, this seemed to have spurred feelings of anger: 
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413  They’ve said ‘Don’t plan anything.’  Why not?  I want to plan, I want to plan 
414 Christmas. Christmas is a huge thing in our family. It is the best day ever.  I . . . I 
415 really hated the fact that someone turned round and said, ‘don’t look to the future 
416 don’t try and plan anything because you never know how you’re going to feel.’  And 
417 I’m like, ‘NO...’.  
418  
419  Photograph 1. Christmas at home 
420  Photographs seem to help Paul to project a narrative of young adulthood into the 
421 future, protecting his sense of self away from an identification with cancer and illness. Paul’s 
422 photographs asserted well-being, special days out, meals cooked and eaten, hobbies, and 
423 holidays. Paul recognised this method of coping, and said: 
424 I think I blanked cancer out.  I don’t think about things, I don’t dwell on that. When 
425 I’m having my treatment, it’s about that day, so then I go home.  Like I forget that 
426 day’s even happened.   
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427 The work of acknowledging and integrating the split of cancer can be seen in the way 
428 he took and shared just two photographs representing illness: one of an intravenous drip stand 
429 to which he was connected for days at a time over a period of a year and who he called his 
430 ‘new friend’;  as well as a photograph of the blank wall opposite his bed in his hospital room.   
431 To Paul this reflected the emptiness of life whilst on chemotherapy treatment.  Nick took a 
432 similar photograph of his blank wall and describing a sense of boredom said:  “. . . he would 
433 have to find something to do otherwise I will go crazy and end up killing someone or 
434 something”. 
435  
436 Photograph 2. The blank wall 
437  
438 For Nick, diagnosed with acute myeloid leukaemia, photographs documented his 
439 physical recuperation after weeks of isolation during high dose chemotherapy and a bone 
440 marrow transplant.  His visual narrative provided insights into the times that otherwise might 
441 be difficult to articulate, or even observe.  After his transplant Nick was very ill, and a 
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442 photograph of a crane illustrated the extent of his incapacity, as watching the cranes go up 
443 and down was the only thing he could do for several days.   
444 The recovery process, documented by Nick, provided the narrative basis for his 
445 emerging ability to be back in the world, after weeks and months of isolation. This growing 
446 capacity was visualised through social events captured in photographs.  First, was a picture 
447 with his brother, his bone marrow donor, and second a small dinner with his friends. 
448 Attendance at a big stadium rugby game with tens of thousands of other people signified 
449 higher immune system strength and physical recovery. The series culminated with 
450 photographs of his engagement, and a fully recovered adult body. This visual narrative, over 
451 a period of one year, represents and performs the social action that propelled Nick forward 
452 with his new life.  
453 Psychosocial Reflections  
454 The psychosocial lens has been reflected on throughout this paper as it became inherently 
455 entwined with the co construction of narrative over time and the use of the visual image, 
456 symbol and metaphor. Possession of psychosocial sensibility is a useful tool when seeking to 
457 understand more deeply the relationship between narrative, meaning and personal or social 
458 action.  Building rapport over time and bearing witness to suffering and sadness was not 
459 without personal cost and exhaustive writing of reflective notes were essential to capture and 
460 manage this process.   Much reflection was necessary in the managing the endings of research 
461 participation, as well as, for some, the endings of life: 
462  When I was informed Paul was gravely ill and most probably dying, I was actually 
463 listening to his interviews (with headphones on), in the first stage of analysis.  The 
464 juxtaposition of hope and life in his interview with an awareness of the reality was 
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465 powerful and I had to go outside and take a deep breath, the feeling was of total 
466 sadness.  
467  Similarly the transference and countertransference after some of these interviews could be 
468 very powerful.   On a number of occasions there was an emotional response which seemed to 
469 come from nowhere, hours or sometimes days after the interview. For example after an 
470 interview with Lucy the researcher wrote: 
471 I felt emotional, full of angst and deep heightened sadness following the interview 
472 and was exhausted the following day. At the end of the week I wept tears for two 
473 hours without knowing the cause or feeling sad. This was the same amount of time 
474 Lucy had wept with me. 
475  Time, reflective space and reflective writing became essential and the longitudinal 
476 design in some ways supported the necessary reflexive process of being able to sit alongside 
477 the participants despite the uncomfortable feelings that this evoked by doing so.  In many 
478 ways each stage of the study, and the connection to these young adults and their stories 
479 through recruitment, data collection, analysis and report writing, required another layer of 
480 mourning to take place.  
481     Containment and providing a safe intersubjective space is central in studies such as 
482 this, both to the individual participant, and the researcher.  In the interview the researcher’s 
483 task was to ‘hold’ some of the participant’s feelings a process that has been described as, ‘the 
484 capacity for being in uncertainties, mysteries, doubts without reaching after fact and reason’ 
485 [(Keats 1899 p. 212) in Clarke and Hogget (2008, p.16)].  Reflexivity, supervision, 
486 psychotherapeutic debriefing and the psychosocial research group provided contained spaces 
487 for the researcher and for the interpretation of these participant’s data. 
21 
 
488 Discussion 
489   
490 In this paper we have highlighted the importance of longitudinal, visual and psychosocial 
491 methods in narrative research in the context of young adult cancer. As Polkinghorne (1988) 
492 suggests, through narrative configuration and the constant revising of what has been, and 
493 anticipation of what will be, it may be possible to accept a shifting sense of identity and a 
494 bearable concept of self. Bruner suggests that a life led is inseparable to a life told and that 
495 narrative organises the structure of human experience; we become who we are by telling the 
496 stories of our lives (Bruner, 1990). This relationship is complex, and as Craib (2004) and 
497 Bradbury and Day Sclater (2004) suggest, most narratives, if they have any worth, are multi-
498 layered, multidirectional, and are contingent and transient within the nature of their meaning. 
499 The complexity of narrative mirrors the complexity of internal and external (social) aspects 
500 of life. As the stories within this study illustrate, things that are too difficult may be concealed 
501 within the narrative (Craib, 2004), separated from self (Bury, 1991) or remain under the 
502 surface (Clarke and Hoggett, 2008; Cooper, 2009 ). The methods used here were important 
503 for an understanding of the  intricacy and individuality of narrative. This included the 
504 centrality of experience which changes over time, meaning-making and how this helped 
505 constitute and reconstitute the nature of living after cancer is diagnosed.  
506  Participants all faced uncertain futures with a need to re-interprete the past, and re-
507 conceptualise or re-negotiate the present. Understanding this situation involved getting 
508 underneath the surface of everyday talk, facilitated by visual methods and a psychosocial 
509 sensibility,  and also by a sense of walking alongside the participants over the year that they 
510 were part of this study. What these methods revealed was the profound and dynamic identity 
511 work involved in living with a cancer diagnosis and treatment so early in life; involving a 
512 circular and repeating relationship between reflection, reconstitution and action.  These 
22 
 
513 young adults embodied a profound contradiction simultaneously facing death, loss and 
514 mourning while also seeking ways to thrust forward into an imagined future.  
515 Such a contradiction creates conflict which is hard to bear, for all concerned. It can 
516 also explain the professional, academic and cultural defences that emerge in such situations 
517 (Katz and Johnson, 2006), protecting one (often cancer professionals) from confrontation 
518 with mortality, pain and suffering.  In such a situation the felt emotional dimensions of our 
519 lives are often overlooked in the study of the social world (Craib, 2001).  Catherine Riessman 
520 has encouraged courage among researchers arguing that ‘doing justice means we cannot look 
521 away' from emotions ‘too hard to bear’(Riessman, 2002 p. 194).  The methods used in this 
522 study provide one way that this is painful to witness. 
523  
524 The research relationship, and the interview space, allowed a co-production of 
525 narrative, an event wherein, over time, the intolerable could be expressed and experienced. 
526 Some of the participants expressed how being part of this study, and the telling of their story, 
527 felt beneficial and was a unique opportunity for sense making and the building of a new 
528 identity through tumultuous change. It appeared to help some to cope and to make pathways 
529 into the future, irrespective of how truncated that now may be.  One participant stated “I’m 
530 piecing together all those conversations into sort of one story almost, like now you’ve got the 
531 whole story”. 
532   
533 Conclusion 
534 This paper has described a study that explored the difficult emotional terrain of young adults 
535 faced with cancer to illustrate the value of methods which allowed reflection, reflexivity and, 
536 over time the representation of experience through the collection of personal narratives. 
537 Narrative, longitudinal research designs have the potential to study the unfolding process of 
23 
 
538 meaning making and personal or social action. The illustration here, drawn from young adults 
539 with cancer may be particularly revealing as, both biographically and in terms of the cancer 
540 and its treatment, there was an added degree of urgency. Visual and psychosocial methods 
541 were essential for getting to the ‘untellable’ underneath surface and understanding the 
542 complexity, multi-directionality, multi-dimensionality and the inter-subjectivity of the human 
543 cancer experience. By so doing the analysis of these participants’ narratives help to develop 
544 our understandings of the link between the internal and external self  (the body and the social) 
545 and the relationships between narrative to meaning, reconstitution and potential action. The 
546 exploration of these methods within their relational, ethical and situational contexts ensured 
547 that the study extended and deepened all our insights. The experiences of young adults with 
548 cancer were explored in ways that have not been achieved before.  We trust that this paper 
549 helps to advance the potential of such innovative, creative methods to understand experience, 
550 especially human suffering, in all its complexity. 
551  
552 Acknowledgements 
553  
554 We would like to thank the young adults who participated in this study; Professor Andrew 
555 Cooper at the Tavistock Clinic, for providing psychosocial insight and allowing the 
556 researcher to participate in a Psychosocial Research Group; and the Florence Nightingale 
557 Foundation for to supporting some of the financial costs of the research. 
558 Declaration of Interest 
559 There has been no financial interest of benefit that has arisen from the direct applications of 
560 the research study reported in this paper 
561  
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