“Nanny’s on The Gear”: Chaos and Medicinal Cannabis in Advanced Cancer Illness Narratives

Abstract

This critical perspective essay explores the stories told by three women with advanced cancer taking medicinal cannabis as part of a randomized clinical trial. Typical illness narratives, ranging from restitution to chaos and quest narratives, foreground cancer’s impact on the storyteller’s life. The stories presented in this essay take a different narrative path; they demonstrate the use of medicinal cannabis—the drug, the idea, the trial—as tools to decenter illness from their stories. Such stories illustrate the importance of recognizing and honoring chaos narratives and the value of clinical trials as narrative tools. As timeframes for living with terminal diagnoses extend, narratives that work to decenter illness may become more common.

Key words: illness narrative; chaos narrative; cancer; liminality

Introduction

On many occasions my grandfather tried to tell me his Holocaust story; I (FZ) could never understand any of it. I still have no idea how many siblings he had—a shifting number—or what happened to his toes. It turns out I was not alone in the confusion, with interviewers tasked with recording the oral histories of Holocaust survivors subtly directing their interviewees out of their chaos narratives and toward “another narrative that exhibit[ed] the resistance of the human spirit.”^1(p102) A journalist once published an article about my grandfather, and the coherent story the journalist told was one with which I was unfamiliar. In retrospect, it is possible that the journalist helped to weave my grandfather’s story into a more palatable narrative, with the final line of the article noting: “Bergman today doesn’t begrudge his mistreatment, ‘I look back and realise it was the war years . . . they [Germans] had a job to do,’ he says simply.”^2(p16) This was the first time I had heard an ending to the story, let alone one so triumphantly resolved.

My grandfather’s story captures a feature not only of narratives told by Holocaust survivors, but also of the stories of people living with incurable cancer. Illness narratives foreground cancer’s impact on the storyteller’s life, recognizing the suffering of those who are ill.¹ They are useful in helping people with cancer to make sense of their experiences and to bring self and identity back into being after the ‘biographical disruption’ caused by a cancer diagnosis.^3,4 The stories told by people with cancer, however, can also be filled with confusion, uncertainty, multiplicity and incoherence.⁵ These are chaos narratives.

Forms of Illness Narratives

In The Wounded Storyteller, Frank¹ notes several different illness narrative forms:

• Restitution narratives—stories in which somebody gets ill and then recovers—are the most common.
• Quest narratives—tales of bravely accepting illness (and disability or death) and finding insight in the journey. These are the second most common.
• Chaos narratives are the least common. They are characterized by a pervasive loss of control: no clear endings and no triumphant recovery. Some parts of a story might be cohesive, while other parts can lose their narrative structure and descend into chaos, as if the teller has lost the thread of what they are saying and where the story is going. Such narratives can provoke anxiety in listeners. They can be confronting, and lack adherence to social expectations of success, recovery, or meaning-making.⁶ Without a cohesive sequence of events, audiences may feel that the speaker of a chaos narrative is not properly telling their story.¹

Western Expectations of Narrative

Chaos narratives can present a problem for dying people for whom psychological and narrative closure is not always an option. A preference for narrative cohesion is reflected in the work of Glaser and Strauss,⁷ who write that psychological closure and coherence lead to a better death. These ideas are situated within Western expectations that stories unfold sequentially, with a beginning, middle, and end.⁸ This coherence paradigm is often perpetuated in stories of illness,⁵ unintentionally marginalizing non-normative stories and experiences⁸ such as stories of ill people who never get better.

Furthermore, a cultural rejection of death in western cultures places those who are dying in an unknown social space, where they are expected to act ‘well’ and continue on living,^9,10 even though the emotional, philosophical, and relational frameworks that previously gave their lives structure and meaning have been pulled away.

Three Voices

In this essay we explore the narratives told by three women with advanced cancer in interviews about their experiences of participating in a randomized clinical trial (RCT) for medicinal cannabis (MC). Typical illness narratives foreground cancer’s impact. The stories presented in this essay have a different narrative destination. Within the women’s stories we find that MC—the drug, the idea, the trial—is used as a tool to push against chaos, decenter illness, and support connection to different aspects of their lives. This is a phenomenon not yet described in existing scholarship. To position readers throughout our essay, in the theoretical framework section that follows we center illness narratives—especially chaos narratives—while introducing intersecting concepts.

Cancer and Illness Narratives

Narratives are the stories that are always being (re)drafted and that help us to “organize the facts of the past, make sense of the present, and project into the future.”^4(p1) Since the narrative turn in the 1980s, psychologists, sociologists, and humanities scholars have studied the role of narratives in the socio-personal process of identity construction. These narratives are always embodied: “the kind of body that one has and is becomes crucial to the kind of story told.”^11(p219) When a person’s body and narrative is disrupted by serious illness or injury, illness narratives become important tools in reconstituting one’s identity.¹² They are a way of bridging illness and biography, and figuring out what illness means to one’s life story.⁴

Restitution Narratives in Health Care Contexts

In rehabilitation contexts, health professionals have been found to work with patients to construct restitution narratives of recovery, success, and ‘cheer’ to support a client’s positivity and commitment to therapy.^12,13 Disconnection and reconnection feature in such narratives. Frank characterizes the restitution narrative as: “Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again” and able to reconnect with the person, roles, relationships and activities once enjoyed.^1(p77)

Importantly, such restitution narratives are not just for the person who is facing illness, but also for the story listeners: family, friends, health professionals. In this way, narratives can represent a form of interpersonal emotion management, with the storyteller assuaging the listener’s fears and complying with cultural rules that people maintain hope and bravely pursue treatment.^14,15 Such emotion management is likely gendered. Froyum¹⁶ argues that women are not only responsible for managing their own emotional states but are also expected to monitor and look after other people’s emotional states.

Liminality and Chaos Narratives

Yet, for people with a terminal cancer diagnosis, liminality¹⁷—a sense of being at the threshold, neither living nor dying but always in-between—positions restitution narratives as out of reach. This persistent state of liminality features a subjective and enduring experience of illness brought about and maintained through the cancer diagnosis.¹⁸ As treatment goalposts shift from illness recovery to comfort before death,⁸ patients shift into stasis and uncertainty; past trajectories, identities, and social roles held before their illness become either difficult or impossible to perform.⁹

Chaos narratives—where no one gets better, sequence and cause-effect narrative order are missing, and present and future are meaningless—feature in this state.¹ Yet, such narratives are often deemed ‘untellable’: too difficult for family, friends, and healthcare professionals to entertain and hear.⁶ However, honoring and respecting chaos narratives is said to be important to opening space for a person to find and adopt other more hopeful narratives over time,¹¹ such as a quest narrative that finds meaning in the present.

While the stories presented here are categorized as chaos narratives, they also demonstrate the use of MC as a tool to decenter illness from their stories, suggesting the narrative value of MC and clinical trials.

Method

The women’s stories are presented below through a biographical approach to thematic narrative analysis^19,20 and framed by consideration of the above concepts and scholarship. From interviews (n=31) collected as part of a broader qualitative sub-study (HREC approval #86472) into the experiences of patients with advanced cancer participating in an MC clinical trial,^21,22 we purposively selected these three stories due to their use of MC as a narrative tool. Participants have been given pseudonyms, and identifying details have been changed to maintain confidentiality.

The biographical approach to thematic analysis employed for this essay supports the presentation of large unbroken sections of text, while still using analytical codes to develop themes.¹⁹ This process was invoked to undermine (unintentional) attempts to correct participants’ narratives to conform to expected sequential and cultural scripts, and perpetuate the coherence paradigm—a practice that has been found to occur in illness narrative research.⁵ The biographical presentation also allows for the privileging of the storytellers’ own voices. As such, the women’s stories are presented through a foregrounding of narratives with author reflections and conceptual framing woven throughout.

Anna

Anna is relatively young. She received her diagnosis when her children were young—not yet teenagers—and she was preparing to get married. At that time, she was working as a health professional and valued being independent and the primary breadwinner for her family.

Anna’s need to depend on her partner owing to her cancer does not sit comfortably. She begins her narrative by noting how receiving a cancer diagnosis disrupted her plans to travel with her family. Anna mentions that her career and expectations of the future have been disrupted by cancer, and that she often sees herself as a “full-time sick person.” This also affects Anna’s role as a mother:

“I guess I don’t feel comfortable saying that I’m a stay-at-home mum. I feel like that denigrates what stay-at-home mums actually do, ‘cause I feel like I don’t do a lot of stuff because I get too tired or I have appointments. Or so my daughter, she goes to daycare even though I don’t work. I don’t feel like I’m particularly good at playing with my kids. I’ve never been very good at playing with my kids. But I will do things for them. So yeah, I bake things, and a lot of our food is made from scratch.”

Anna notes that since starting the MC trial, she has been able to engage in activities outside of being a sick person. She describes fighting the limitations imposed by cancer by planning family holidays for the dual purpose of doing something she previously loved and creating memories for her children:

“We prioritize holidays because it’s around trying to make sure the kids have some memories of me… particularly for my daughter, because she’s so little that there’s some memories maybe that will stick in her brain of time that we’ve spent together and things that we’ve done together.”

Here too, cancer gets in the way, but she navigates around it:

“We pick the week that I’m going to be most healthy because I usually have one week where I feel pretty good, one week where I feel weak, and one week where I feel terrible. So we pick the week when I’m feeling good and then I just push myself for that week.”

Anna’s experience of having one week of feeling good, one of feeling weak, and one of feeling terrible creates a sense of predictability common among people with cancer who often live within patterns and timeframes based around treatment and scans.³ It is within this structure imposed by cancer that Anna decides to participate in the MC trial. She finds that while taking MC, she has more energy. She is able to ride her bike, no longer needs to take a nap during the day, and has more capacity for activities. While on the MC trial, Anna feels encouraged by her newly-found energy and pushes against the liminality of her prognosis. She begins planning for the future by enrolling in a university course:

“When I was on the trial, I thought about going to uni and decided to enroll in uni, which had not been even on my radar of being something that I could possibly do. And so I was like, you know, that was really positive to think that I could actually learn something and I really enjoyed … well, I hated doing the assignment. I made myself crazy on it and I just need to step back and figure out how to study better. But I enjoyed learning something and having something that wasn’t cancer or kids, because I feel like my whole life is cancer, kids, cancer, kids, that’s it, you know.”

However, attempting university draws attention to the limits of being terminally ill. This section of the interview and Anna’s general feelings, rationale, and experience of returning to study form something of a chaos narrative without a clear beginning, middle, or end: 

“It was too much for me. And I got myself, like, it was irrational. My behavior was irrational, and I knew it was, even at the time. That there was this assignment and I just found it impossible to do and I was putting so much work into it and so much time into it, like far more than I logically knew it deserved, like it was a small assignment. But I just still felt like I wasn’t answering the question, partly because it was an impossible bloody question to answer. So, I dropped out. But with the idea that I would sort of regroup a bit this semester and then maybe try again next year. And just do one subject at a time and … doesn’t matter. Because I think I also got myself stressed about like, well, I have to do it now because otherwise I really never will finish it. And it’s like, well, maybe I won’t. I probably won’t. Like statistically I will not finish, you know, even the grad cert statistically, but maybe I will.”

Anna tries to escape her liminality by pursuing postgraduate studies. Through taking MC and enrolling in the course, she is able to temporarily construct an identity that is separate from her illness and parenting roles. Yet, she still finds that the cancer is controlling her life. As Anna negotiates terminal cancer, she acknowledges feeling separate from her peers, a sense of being left behind and standing still in time—sentiments common for people with cancer:²³

“I have my high school reunion coming up in a couple of weeks and I just feel like I’m, what the hell am I going to talk about, you know? And then you feel awkward. You know, when people ask what you’re up to and you’re like, hey, I’m up to having cancer and then people are like, oh, that’s so terrible. And then, then that’s what you’re talking about. Like, I don’t wanna talk about that. That’s boring and nothing.”

The story as Anna presents it is at times a chaos narrative. For Anna, cancer is “boring and nothing.” Yet she does have cancer, terminal cancer, and it has disrupted her life, her future, her identity and has placed limits around what she can do with her time. Of all three women, Anna’s narrative most acutely illustrates liminality. Anna finds it difficult to engage in the roles and identities that she previously performed. The trouble she has in retrieving these social roles is noted as a common experience for those with chronic illness.^9,24 At the same time, Anna is actively grappling with her current sick role. In this way, Anna’s narrative captures a negotiated relationship between illness, self, body, and identity. Like many people, she cycles between avoiding and adapting to her new illness identity.²⁵

Anna’s future-oriented focus contains questions captured by Kuhl of other palliative care patients: “How do I exist in the time that remains? Do I prepare to die, or do I embrace life?”^26(p45) Her story shows chaos in her planning. The increased energy she experienced while participating in the MC trial facilitated temporary narrative reconstruction, which bumped against the terminality of her illness. For Anna, MC allows for additional questions to the ones provided by Kuhl and a reimagining of the time she has left. In this way, MC provides Anna a means of connecting, at least for a semester, with a future she felt resigned to forget.

Wendy

Wendy is at a different life stage than Anna, which marks a central difference in their narratives. While Anna’s angst about her inability to plan for the future and feed her professional identity could be seen as severe, Wendy appears to be accepting of the liminality wrought by her illness. Both narratives show an effort to be separate from the boundedness enforced by terminal cancer, but the two women do this in different ways. Certain conditions of the women’s lives draw parallels. For example, both women have prioritized travel as something that is meaningful, both have had careers as carers, both have neurodiverse children.

Like Anna, Wendy talks about her family, including her married relationship and her children. Unlike Anna, however, she discusses her subsequent divorce, and her children who have now grown up and have married and divorced and had children themselves. Wendy describes having gone through an identity rebirth in her 50’s, deprioritizing her mother identity and focusing on herself. She enrolled in a course to finish her high school certificate and then studied to become a health professional. She enjoyed working in her profession so much that after retiring she decided to return to work. Wendy was traveling, working, becoming healthier, and had even started dating a younger man—“I’ve found myself a 52-year-old boyfriend”—although this long-distance relationship ended following her diagnosis.

Anna’s story is filled with intellectualizing, whereas Wendy imbues her experience with emotion. Wendy is not looking to escape her experience and instead appears to be interested in what the journey might bring, joking that her cancer is “rare and aggressive, and who wants something common if you can have rare and aggressive?” In spite of her outwardly positive attitude, the liminality imposed by her prognosis and the limitations in participating in the life she has now almost lost is evident in her story:

“We just have a lot of time in bed because I’ve been quite unwell. Some of my treatments, the immunotherapy, and my second lot of chemo haven’t been kind to me. But then I’d get up during the day and sit out for some time. I’m no longer leaving the house for anything else. Then in the evening, [my first son] and I would just sit, and watch TV, and chat, and stuff, which was just so lovely. It’s just so nice. Then [my second son] would come home if he was coming up from work around 8:30. So he didn’t sit and watch TV with us very often, but sometimes. Yeah, so it was just nice, just nice. Loved it.”

Like Anna, Wendy decenters the experience of cancer from her narrative. While cancer is the reason she is where she is, she almost displaces cancer as a real impediment and instead focuses on the positive connections she has with her family and sets about enjoying the life she has left. In the context of ceasing treatment and accepting palliation, she notes:

“I’m quite well at the moment. So, I anticipate having more periods of sort of wellness as the cancer is taking over now. It’s resistant. I know that it’s going to not always be like this, but at least I’ll know what’s causing it, and I’m not doing it to myself, or I know that the oncologists had my best interest at heart, and I appreciate everything they did. But, I mean, therapy just wasn’t for me, nearly killing me. It was just dreadful. But anyway, that was life. We’ve done that now, and we all moved on. I do anticipate having a period of time at home where I can do the simple things, be with my family, and yeah, I’m looking forward to it.”

Wendy’s acceptance of cancer might in part be explained by social expectations around the disease, such as the positive cancer ‘warrior’ attitude. This attitude is captured by Wendy’s insistence that it is important to have “the right headspace.” This idea is located within a broader cultural framing of cancer as something that can be fought against and beaten, if only one has the right mental attitude.²⁷ Western conceptualizations of cancer are imbued with morality,²⁸ with the event of being diagnosed with cancer often taken to signal an individual’s failure to look after themselves.²⁹ Upon receiving a cancer diagnosis—and notice of their moral failing—they are required to ‘think positively’ to ‘beat’ the disease.^30,31 However, interpreting Wendy’s positive mental attitude as one borne from neoliberalism and ‘positive thinking’ contrasts with her decision to cease treatment and to enjoy time with her sons before cancer takes over her body.

It is possible that the positivity expressed by Wendy might be more a product of emotion work, where women are tasked with the suppression of their negative emotions.¹⁵ This emotion work is not unique to Wendy but is seen throughout all three stories. It is noted that women are often concerned about appearing as ‘whingers’ when expressing pain, with gender fueling worries about how their voicing of pain might be received.³² Furthermore, the expectation that women manage others’ emotions as well as their own¹⁶ may have influenced how the interviewees presented their stories, as well as their attempts to ‘look after’ the interviewer during the interview.

Wendy actively looked after the interviewer early in the interview, by asking permission to share sensitive details of her experience. Dorothy (yet to be introduced) inverted the interview at the end by asking questions about the interviewer’s personal life. Anna, while confiding that she was not good at playing with her children, quickly rushed in to reassure the interviewer that she cares for them in other ways.

One further interpretation of Wendy’s story is that she is working to transition from a chaos to a quest narrative. Quest narratives recognize the suffering but are characterized by acceptance of the illness and by finding meaning and benefit in the journey.³³ We see evidence of this transition most clearly where she says, “I do anticipate having…time at home where I can…be with my family…I’m looking forward to it.” Yet, Wendy centers MC in her narrative, decentering her illness.

Unlike Anna, who reflects on the effects of MC on her energy levels as precipitating her temporary narrative reconstruction, Wendy foregrounds the novelty of participating in a clinical trial of a stigmatized drug. She embraces participating in the trial as an experience that has given her family something to have fun with:

“It gave my grandkids a laugh: ‘what’s nanny up to?’ We said the grandkids loved the fact that nanny was ‘on the gear.’ It became part of the story at home, and it was positive in that respect, very much so.”

Wendy believes herself to be on the placebo strain of the drug, noting that taking MC was a “non-event” and that she “didn’t feel any benefits from it.” This does not stop her, however, from escaping liminality through the experience of participating in the MC trial itself—a motivation for MC trial participation by patients with advanced cancer not previously identified in the literature.³⁴

For Wendy, the socio-cultural perceptions of cannabis and the novelty of taking an otherwise illicit drug allows her to temporarily escape the advanced cancer’s liminality, potentially without ever having consumed any actual cannabis. Wendy’s experience might be explained by a response to liminality argued by Little et al,¹⁷ who suggest that during the liminal experience, patients attempt to reassert control over their lives by engaging in small acts of independence and non-compliance. The non-compliance Little et al refer to is medical. In medicine, non-compliance has been defined as times when patients fail to align themselves with medical advice, such as following a diet, showing up for an examination, or taking medication at the required intervals.³⁵

Wendy taking MC as an act of ‘symbolic’ non-compliance is framed by the stigma around cannabis, with this being most acute among older people,³⁶ and specifically for women.³⁷ What makes Wendy’s non-compliance symbolic is that she is in actuality complying with the RCT by taking MC, but at the same time her compliance with the MC RCT might be seen as an act of broader social non-compliance. In this context, Nanny being ‘on the gear,’ is conceptualized as a form of fun and rebellion: a break from her illness narrative through her status as a ‘rebel’ cannabis user. This status as a cannabis user provides a new point of connection for Wendy and her family, allowing for a break from the chaos of her illness. It has become “part of the story at home,” providing a means of relating with her family that sits outside of her status as a cancer patient.

Dorothy

While Dorothy’s narrative is presented here as chronological and thematic, in the interview itself she jumps from topic to topic. Despite this, Dorothy appears comfortable in the chaos. She provides for herself a coherence while facing the incoherence, primarily by centering the value of relationality and focusing on other people’s wellbeing within her story. Dorothy’s liminality shows up primarily as fatigue and physical limitations, which conflict with her “I’m here for a good time not a long time” mentality. Of the three women, Dorothy’s narrative is the most chaotic. However, this chaos does not appear to present the same problem as it does for Anna.

In younger life before her cancer diagnosis, Dorothy worked and was a single mother raising two children on her own. Like Wendy, Dorothy also found herself a younger boyfriend (“I was a cougar”). She has several grandchildren and great-grandchildren. Dorothy was first diagnosed with cancer several years before being informed that it had metastasized and spread throughout her body. She had been receiving palliative care treatment for many years at the time of the interview.

For Dorothy, community and relationships hold central importance. Dorothy demonstrates this in several ways throughout the interview. She talks about raising her children to be good people, a feat she is proud of. She talks about inviting her then-adult children to live with her—in a two-bedroom house overflowing with occupants—and refers to this as “the house of hope.” Dorothy’s relational focus extends beyond her family to friends and strangers, whom she also looks to support. Dorothy’s purpose involves an intentional cultivation of relationships and an active participation in life, with the 80-year-old stating that “I’ve got to always have something to do. Otherwise, I’ll shrivel up and die. I’m here for a good time, not a long time.”

Unlike Anna, and similar to Wendy, Dorothy appears to be accepting of death, noting that she has had a really good life. Terminal cancer has not been as disruptive for Dorothy as it has been for Anna. She is happy to re-write the narrative to fit her life as she goes along. This also extends to the way she carries herself in the world:

“I think a lot of it’s got to do with your head space and how you look at things. I forget that I have cancer, whereas a lot of people tend to say, ‘I’ve got cancer.’ I only use my cancer card when I have to.”

However, just as with the other two women, the liminality caused by her illness is also part of Dorothy’s experience. For Dorothy liminality shows up most readily around her experience of physical limitation and fatigue:

“Well, I live with my sister at the moment, and we was born on the same day. She’s 84 this birthday next month and she’s mowing the lawn. And I said, ‘I can help you with the lawn,’ and I’ve mowed about one tree strip, and I thought, ‘Yeah, you can take over.’ But she said she’s better than I am and she’s more mobile than I am, and it really pisses me off. But anyway, can’t help it… My head thinks I’m 15 years old, my body thinks I’m 100 years old because when I wake up in the morning, I think I’ll get up and do such and such. It takes me 10 minutes to get out of bed.”

As it does for Anna and Wendy, MC and participating in the MC trial provide a break from the limitations imposed by cancer. But for Dorothy, her escape from liminality is facilitated by her belief in God, and in God’s belief in MC:

“I really believe that I was talking to God and at one stage there He showed me a scale and there was this chick on the scale and it had number seven on it. [I] said, ‘What’s number seven?’ And He said, ‘Means you’re a talker.’ And I went, ‘Oh, thank you.’ And the number one, He said, ‘That’s the person that doesn’t, just think of it, doesn’t talk.’ And I said, ‘I’m a talker.’ And He also told me that the oil was the one that… He said to me, he said, ‘If you don’t do such and such,’ He said, ‘in a certain time,’ He said, ‘the oil won’t help you.’ And it was like a timeframe. And because I was on the oil, I had this huge scope, a longer scope because He said the oil has given me that scope, a longer scope in life. That’s what He told me. I mean, I know the interview is being recorded… I don’t go to church and I don’t preach to people, but I believe I spoke to God and He told me that having been on… He told me in His words, He’s really funny. He’s got a great sense of humor. Anyway, I can’t tell you the whole lot because you’ll think, ‘Get the white jacket out, you know she’s another.’ But He told me that the cannabis oil has given me a better life, and I believe that I have. But I would not be without it because I believe that that’s what kept me going. That’s my belief.”

Spiritual wellbeing has long been accepted to provide some protection against end-of-life despair for those with terminal illness,³⁸ with many patients seeing doctors as ‘God’s Helper.’³⁹ Dorothy takes this further and sees cannabis as not only God’s helper, but as a direct connection point to God, noting that MC was recommended to her by God to extend her life. Interestingly, while Dorothy’s conceptualization of cannabis is unfamiliar and unexpected in a Western context, it echoes the Rastafarian idea of cannabis as essential for wellbeing and as a link to God.⁴⁰

Unlike the other two participants, Dorothy is the only participant who has expressed hope for the healing of her cancer. In contrast, the two other women note their awareness that their life would soon be ended by the disease. Dorothy indicates that she is accepting of her death, but—based on her communication with God—she also believes that God is working through the cannabis oil to extend her life; her story defies the neatness of Frank’s¹ illness narratives, including features of both recovery and quest narratives. MC allows Dorothy a pathway out of cancer’s liminality through connection with God by providing Dorothy a physical manifestation of God’s healing power. Dorothy goes on to describe the way she believes MC has worked in her body to prolong the scope of her life. She talks about how MC cleans her mind, and also cleans her body:

“Sounds ridiculous, but it used to feel like someone was inside my body just cleaning my body out. Not that I’d go to the toilet or anything because it was just like, it’s hard to explain, but it’s just like my body was being cleaned out. After about 20 minutes I could feel like my water all through in my internal organs and all through my stomach and everywhere had been cleaned out.”

Dorothy and Wendy are already older than 60, so planning for the future looks different than for Anna who is much younger. For the older participants, cancer is just one more thing to deal with, but for Anna, cancer is the thing to deal with. She is trying to pack a lifetime of family memories and experiences into a very short period of time. This is different from Dorothy and Wendy, who have already in many ways lived what they perceive as a wonderful life.

Sinding and Wiernikowski⁴¹ note that society is organized to position older women’s cancer as insignificant. By emphasizing the positive aspects of their lives rather than dwelling on cancer, Wendy and Dorothy effectively perpetuate the insignificance expected of older women with the disease. This is embodied in different ways by Wendy and Dorothy, with Wendy telling her interviewer that she has enjoyed spending time with her sons while she has been unwell and Dorothy’s declaration that she avoids playing the “cancer card.”

In spite of their differences in life stages and the differences between their stories, for all three women there is a sense of being liminal and of not being able to do what they would like to do or be who they would like to be. For all three, the inclusion of MC offers a narrative tool: to briefly escape feelings of liminality, to connect to relationships and identities lost to cancer, and to side-step one’s (chaos) illness narrative.

Decentering and Connecting

Illness narratives are filled with liminality, disconnection from some identities and relationships, and recharged connections to others.^1,17 While all three women talk about these features of their experience, they also do something else uncaptured by illness narrative literature: all three decenter illness from their stories by redirecting focus to other aspects of their lives, using MC as a narrative tool.

It is possible that the women’s act of decentering cancer from their narratives is a result of the social expectation of emotion work required of women,¹⁵ the marginalizing of voices of older women with cancer,⁴¹ or the ‘positive cancer warrior’ mentalities expected of cancer survivors. A potential limitation to this finding is that it is possible, if not likely, that many authors have encountered ill people who decenter illness from their narratives and have chosen not to include these sections of the interview in their research.

MC as a Tool for Decentering Illness

Regardless of how commonplace decentering is in illness narratives, MC—as a pharmaceutical intervention, trial opportunity, and spiritual artefact—was used as a narrative tool in this decentering, allowing for the temporary displacement of cancer in favor of connections to other areas of their lives. For Wendy, MC allowed for a renewed connection point to her family. For Dorothy, this connection is found in God. For Anna, decentering and connecting allows her to imagine a previously unimagined life. All three stories feature chaos, but they also feature the role of MC in moving the teller away from cancer and towards connection. In this way, MC is used as a tool to dethrone terminal illness as the central focus of their lives—albeit momentarily—and connect to lives, identities, and futures lost, forgotten, or renegotiated.

The decentering of illness in these chaos narratives is noteworthy. Such narratives may reflect the elongated timeline and liminality characteristic of contemporary experiences of advanced cancer.²³ ‘Bearing witness’¹ to these narratives—with illness decentered—may be particularly important to helping patients to work through the chaos, pushing against the disrupted connections and temporal trajectory imposed by cancer. As Smith and Sparkes suggest, honoring and respecting these ‘untellable’⁶ chaos narratives is imperative to helping the ‘wounded storyteller’¹ to become ‘opened up over time to other narratives,’^11(p.232) revised constructions of their somatic, storied, and social self.

Allowing for the Messy and Chaotic

This implication may be particularly important for clinicians working in rehabilitation, where restitution narratives and cheer scripts are the norm.^12,13 Rather than proposing a checklist or guidelines, this work serves as an invitation to clinicians in rehabilitation and other settings for attunement and relationality. In providing disparate responses to terminality, MC, and medical trials, this critical perspective essay seeks to reaffirm the heterogenous nature of the human experience, reminding clinicians to allow for messy chaotic responses to messy chaotic events.

Revisiting my (FZ) grandfather’s story, it becomes apparent that the chaos of his Holocaust narrative was not clearly demarcated but permeated throughout his entire life and life story. As a third generation Holocaust survivor—a title I find a little strange and inflated given my lack of direct experience—I too grew up with a pervasive sense of chaos and transmitted trauma.⁴² It was through my own experiences of chaos and my sense of the lived yet unownable Holocaust connection that a study on MC, palliative care, and cancer became about connection, existentialism, and identity—struggles of my own life mirrored back to me. Just as I used the material in front of me (the three women’s stories) to make sense of my own story, perhaps they, too, used what was in front of them (MC) to make sense of theirs— all four of us making use of what is available in an attempt to remedy the chaos and incoherence in our own lives and narratives.