Category Archives: Uncategorized

Article: Cancer-Before-Cancer: Mythologies of Cancer in Everyday Life

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By Sara Marie Hebsgaard Offerson, Mette Beck Risor, Peter Vedsted, and Rikke Sand Andersen

https://doi.org/10.17157/mat.5.5.540

Abstract: Approaching the presence of cancer in everyday life in terms of mythologies, the article examines what cancer is and how cancer-related potentialities are enacted and embodied in the context of contemporary regimes of anticipation. Based on ethnographic fieldwork in a suburban Danish middle-class community among people who were not immediately afflicted by cancer, we describe different and paradoxical cancer mythologies and show how they provide multiple ways of understanding, anticipating, and dealing with cancer in everyday life. Special attention is paid to the relation between bio-medically informed notions of symptoms and bodily processes, and a ghostly and muted presence of caner, particularly when people are faced with more tangible cancer worries. we explore how contemporary cancer disease-control strategies emphasizing ‘symptom awareness’ interweave with and add to cancer mythologies. We suggest that these strategies also carry moral significance as directives (be aware of early signs of cancer and seek care in time) and create n unintended illusion of certainty that does not correspond with everyday embodied forms of uncertainty and ambiguity. We argue that paying attention to the continuous cultural configurations of cancer that exist “before cancer” will increase understanding of how the public health construction of “cancer awareness” relates to everyday health practices such as symptom experience and health care seeking.

This article examines the ways in which public health messaging contributes to the mythologies of cancer.

This adds an interesting dimension to the question of anticipatory patienthood, a term which describes the ways in which people determined to be “at risk” of disease are constructed as patients even though they are still technically well, and are subject to particular expectations and chronicities. The article essentially argues that public health expands the umbrella of anticipatory patienthood to the general public, and this manifests in anxieties over certain behaviors and symptoms as potentially leading to cancer. Public health messaging also reinforces particular narratives about cancer, leading to a perception of certainty which does not reflect the reality of the illness.

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Book: Breast Cancer Genes and the Gendering of Knowledge

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By Sahra Gibbon

This book focuses on the transformations to the medical field as a result of the expanding possibilities of genomic science.

BRCA genes were identified in the 1990’s, and are responsible for up to 10% of breast and ovarian cancers. BRCA genes were patented and preventative measures institutionalized, but variability between perceived risk and actual cancer incidence betray gaps in medical research. Furthermore, there are social and psychological consequences to perceiving oneself as being at heightened risk for cancer.

The book outlines the issue of “anticipatory patienthood” to describe the state of women who carry a breast cancer gene but do not have breast cancer and may never develop it. These women are constructed as patients or potential patients, and grapple in unique ways with notions of health, illness, and risk.

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Article: Cancer Rehabilitation in Denmark – The Growth of a New Narrative

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By Helle Ploug Hansen and Tine Tjørnhøj-Thomsen

https://doi.org/10.1111/j.1548-1387.2008.00035.x

Abstract: A fundamental assumption behind cancer rehabilitation in many Western societies is that cancer survivors can return to normal life by learning to deal with the consequences of their illness and their treatment. This assumption is supported by increasing political attention to cancer rehabilitation and a growth in residential cancer rehabilitation initiatives in Denmark (Danish Cancer Society 1999: Government of Denmark 2003). On the basis of their ethnographic fieldwork in residential cancer rehabilitation courses, the authors examine the new rehabilitation discourse. They argue that this discourse has challenged the dominant illness narrative, “sick-helped-cured”, producing a new narrative, “sick-helped-as if cured,” and that this new narrative is produced and reproduced through technologies of power and the self.

This article discusses shift in the ways that the biomedical establishment deals with the disconnect between being “cured” and being “well. The article points out out that the dearth of rehabilitation care can be attributed in part to increased survivor rates; the treatment paradigm is no longer just preparing patients for the possibility of death but providing care post treatment. The “cancer establishment” has begun to address that need through rehabilitation programs, which help patients navigate the difficulties of post treatment side effects. The article also discusses patient anxieties over relapse, social stigmas, and the moral value society attaches to patients participation in rehabilitation programs. Hanson points out that rehabilitation still brings up issues of normality vs deviance, assuming normality can be achieved through participation in the program. We see underlying this model the same assumptions about willpower and personal responsibility that are embedded in mainstream narratives about cancer treatment and survivorship.

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Book: Surface Tensions: Surgery, Bodily Boundaries, and the Social Self

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By Lenore Manderson

Pg. 142

Surface Tensions is an academic text that explores the traumas of surgery, especially the way it shapes personal identity. It also interrogates with the meanings of commonly accepted terms such as “normality” and “healing”.

Pg. 24

Essentially, Manerson says, we are socialized to have a very particular idea of how our body ought to function and what it will be like as it ages. Any disruption to that causes a profound cognitive dissonance and “ushers in an existential reckoning”.

Cancer figures heavily into Manderson’s research. The preface chronicles the story of Perdita, a middle aged woman,who has undergone surgical interventions for both breast and colon cancer. Although her cancer has been removed, her mastectomy scar and colostomy bag affect her ability to engage in intimacy and feel desirable, and she often copes with feelings of embarrassment and awkwardness. Distress about the changes brought about by surgery also figure heavily into the other narratives discussed on this website, making Surface Tensions both a useful theoretical text and a source of narratives in and of itself.

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Article: Surveillance life and the shaping of ‘genetically at risk’ chronicities in Denmark

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By Saura Louise Heinsen, Ayo Wahlberg, and Helle Vendel Petersen

https://doi.org/10.1080/13648470.2021.1893654

Abstract: Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer form developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has been traditionally geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families’ and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon– what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of ‘pre-patients’ or ‘pre-symtomatically ill’, we suggest that for those enrolled in lifelong surveillance programs in welfare state Denmark, the relevance of risk fluctuates according to certain moments in the life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterizing surveillance life in therms of living with chronic risk, we show how ‘genetically at risk’ chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to calibrate familial bonds and responsibilities while leading lives punctuated by regular medical checkups.

Surveillance based medical care is a program where people determined by either their current health or genetic testing to be at elevated risk of disease undergo repeated, additional medical testing in order to catch disease in its early stages. They may also make certain lifestyle choices in the hopes of preventing disease entirely. Surveillance medicine has many supporters and many critics– supporters argue that it saves lives, while critics argue that it manufactures epidemics where they do not exist and causes unnecessary anxiety in patients.

This paper in particular pushes back against a criticism of surveillance testing which holds that all patients who are determined to be at risk immediately consider themselves to be ill or are overcome with concern over bodily deterioration. Rather, it argues that medical attentiveness is only heightened at certain moments, which include both key life events and routine medical checkups. Furthermore, patients of surveillance medicine are operating on a fundamentally different motivation than those who are chronically ill. Rather than participating in repeat doctor’s visits in order to live good lives in spite of disease, they are participating to stay healthy and avoid disease.

I think this paper provides a helpful middle ground for both critics and supporters of surveillance medicine, as it both acknowledges that patients outlooks and perspectives change when they learn of their “risk status” but also provides some evidence that this shift is not always big or traumatic, and the delineation in motivations to seek care between people who are ill and those who are at risk is important to discuss.

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Lissa

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Lissa is a graphic novel about two friends who are both dealing with medical crises in the midst of the Arab Spring in Egypt. One of the girls, Anna, discovers that she has the same gene mutation (BRCA) that caused her mother’s breast cancer. A major theme of this book is illness-in-potentia– how patients understand themselves as simultaneously ill and well, the anxieties of constantly undergoing checkups and waiting for diagnosis, and the many pressures placed on patients to make particular choices. Within the story, Anna conducts research, visits support groups, meets with doctors, and talks with current cancer patients. She eventually decides to pursue a double mastectomy without reconstruction, and the book chronicles the ways this affects her social and political life.

Key Outtakes:

Pg. 57

This is the first scene in which Anna confronts her father about the possibilities of a genetic cause for her mother’s illness. He is quick to reassure her, but she is left with lingering doubts.

Pg. 78

Pg. 79

In this panel, Anna is in a preliminary meeting to discuss her eligibility for genetic testing. This is her first foray into being a patient-in-potentia, and it is here that she is first presented with the possibility of preventative surgery.

Pg. 86

This panel shows Anna being told that she carries the BRCA gene. Her reaction is similar to that of people who are being told they have cancer– although she is not yet ill, she now carries the inevitability of illness. She is now experiencing a dual reality of simultaneously being well and having cancer.

Pg.???

Pg. 92

Here Anna reads a book talking about the liminality of carrying a cancer gene, where proto-patients begin to engage in the same behaviors and systems as cancer patients.

Pg. 119

As Anna begins to lean towards choosing a mastectomy, she is also starting to identify with Sontag’s metaphorical Kingdom of the Ill.

Anna experiences some backlash for her decision from her friends and family. Traumatized by her mother’s death and anxious about her newly revealed genetic mutation, preventative care represents not only good health but safety and stability.

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The Undying

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By Anne Boyer

The Undying is a cancer narrative in the form of creative nonfiction. The text has a dreamy quality, with vignettes from Boyer’s personal experiences interwoven with pieces of historical and biomedical information for context.

 Boyer deals heavily with paradoxical wellness, though from a slightly different angle. While most works on this site describe the pre-diagnosis states of either being anticipated patients or being ill without knowing it, Boyer deals with the dissonance of having been diagnosed, and knowing one is gravely ill, but still feeling alright.

She also deals with the tensions of prognosis, both in the instrumentalization of others’ lived experiences with cancer in order to generate statistical reports as well as her own difficulty in translating her symptoms into something easily digested by the medical system. Boyer also addresses the disconnect she feels between her prognosis and the direction her illness is taking, metaphorically linking it to the prophecies of ancient oracles rather than a scientifically backed prediction.

She also addresses the paradox of chemotherapy– though it is a cure for cancer, its side effects are grievous and sometimes deadly:

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Malignant

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By Lochlann Jain

Jain’s book is a rich text for interrogating and defying narrative binaries of cancer.

Jain begins by describing, from their perspective as a patient, the discomforts of receiving a diagnosis and prognosis. They argue that the act of creating a prognosis (along with other forms of data production) instrumentalizes the experiences of those who have cancer before them, and flattens the complexities of their lives, their choices, and their deaths into a single, easily digested statistic.

They then discuss the problem of counterfactuals, an especially upsetting issue for cancer patients. Within our reality we have things that happened and things that didn’t happen, but many cancer patients are haunted by things that they COULD have done to prevent their situation. Jain’s experience with misdiagnosis leaves them troubled by counterfactuals– perhaps nothing would have changed with the course of their illness, and it shouldn’t matter anyway, but they are haunted by the question of whether they should have pushed harder or spoken better to get their doctor to listen to them.

They also address the tensions inherent in diagnosis and remission. We think of the middle of a cancer treatment as the most unpredictable– you don’t know how you’ll respond or if your getting better–  but as Jain points out, the initial and final stages of one’s cancer journey can be the most tenuous. First, pre-diagnosis, there’s a period where you are simultaneously in grave danger but perceive yourself as “well”. Similarly, remission is a stage where you are perceived as cured, but patients exist in a constant state of anxiety about cancer returning.

Finally, Jain themself identifies as gender nonbinary, and they describe the discomfort they felt with the hyper-visible and hyperfeminized world of breast cancer. They visit a “Look Better, Feel Better” event sponsored by makeup companies, where breast cancer patients are taught to apply makeup and reaffirm their femininity. Jain, who is not overly troubled (at least from the perspective of their gender identity) by the loss of their hair or by the idea of mastectomy finds themself feeling out of place.

In addition to these major themes, Jain also addresses issues of what is considered normal vs abnormal, the meanings embedded in cancer scars, and the hegemony of positive thinking.

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Stitches

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Stitches is an autobiographical graphic novel about author David Small’s childhood experience with cancer. Small’s family is abusive and neglectful, and his parents delay his treatment and conceal from him the very fact that he had cancer in the first place. It is eventually revealed that his tumor was caused by the numerous X-rays his radiologist father gave him. An operation to remove the tumor removes all but one of his vocal cords and rendered him a virtual mute. Rather than focusing on battling cancer, this work centers its narrative on the potentially lifelong complications caused by treatment, the paradox of being simultaneously considered well and gravely ill, and paternalism in medicine.

Key outtakes:

Pg. 132

In this panel, Small has finally been taken to see a doctor about a growth in his neck, and is misdiagnosed with a sebaceous cyst.

Pg. 168

This scene takes place immediately after Small’s first operation, where it is discovered that his cyst is in fact cancer. Here, the doctor’s eyes look menacing, and he seems shifty as he tells what we soon discover to be a bald faced lie.

Pg. 204

In this panel Small discovers a letter written by his mother to his grandmother, and learns that he has had cancer the whole time. Small displays an obvious sense of betrayal at this revelation, but due to the emotional and physical neglect of his family he simply withdraws into himself rather than confront them.

Pg. 190

In this panel Small examines his scar for the first time. Although he has been cured of his cancer, the size and messiness of the cut tells the reader that the real wound is that this operation has been conducted far too late, with serious complications, and without his full consent.

His resulting inability to speak above a whisper completely destroys his social life. He describes becoming effectively invisible at school, and begins cutting class and spending time with social dropouts.

Pg. 238

Small’s parents react poorly when he finally confronts them about his operation, angrily justifying their decision to keep everything from him.

Pg. 287

Here is the book’s final twist: the many unnecessary radiation treatments Small’s father gave him as a child were the source of his cancer. In the mainstream narrative, cancer is internal (genetic or spontaneous) or self inflicted (smoking) or occasionally environmental. Rarely is it something inflicted by a loved one in a pattern of medical abuse.

This completely destroys what is left of his relationship with his parents. After this revelation, he moves out of his house entirely at age 16.

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10 Years

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by XKCD – Randall Munroe


This comic is the latest in an ongoing series in which the author chronicles his fiancé’s experience with illness and an uncertain remission. The parts of the comic in grey represent the previous iterations, titled Two Years and Seven Years. The comic deals with the tenuous temporalities of cancer by tracking the narrator’s wife through the timeline set out by her “survival chart”, and discussing their painful negotiations with the possibilities of the future. The comic also deals with the uncertainty of remission and the anxieties of relapse, particularly in the “seven years” section with the panel in which she insists the pain of a stubbed toe could be a sign a relapse. The comic’s humorous tone disguises the persistent anxiety felt by those in partial remission.

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Full comic shared under a Creative Commons Attribution-NonCommercial 2.5 License