Tag Archives: Remission and Relapse

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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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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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

After The Cure: The Untold Stories of Breast Cancer Survivors

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After The Cure jacket blurb

After the Cure is focused on a single issue: chemotherapy. As Lochlann Jain noted in Malignant, chemo is inherently oxymoronic: it is a poison that cures, and it is sometimes unclear whether patients have died from chemo or from cancer. Chemotherapy can also have serious, long lasting side effects, yet post chemo ailments such as brain fog, fatigue, infertility, secondary neoplasms, etc. are virtually unspoken of within any mainstream cancer narratives. Breast cancer tends to be especially subject to overwhelmingly optimistic patient narratives which cause many patients to do not fit that model to feel excluded, inadequate, or marginalized. After the Cure is a conscious and pointed intervention into mainstream breast cancer narratives, an archive of the stories of people who are “cured” but not “well”.

Key quotes:

Pg. 1

This quote perfectly encapsulates both the phenomenon of lingering unwellness after being “cured” as well as the exclusion of these issues from the popular narrative. When the lingering effects of chemotherapy and the threat of relapse are not acknowledged, patients feel frustrated and lied to.

Quote from Annie Briggs, Pg. 31

This quote addresses a woman’s struggles with cognitive dysfunction resulting from chemotherapy, colloquially known as “chemobrain”. It can last at least ten years, and is extremely frustrating for those who suffer from it.

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