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Quinoa Buffets and Sugar Devils

Experiences of Cancer Survivorship through Food
Buffets de quinoa et sucre diabolisé : les expériences alimentaires des survivants du cancer
Mai-Lei Woo Kinshella

Abstracts

With an emphasis on self-management, discourses of cancer survivorship and healthy diets can become an individualizing project, which is contested through the experiences of food told by the people with a history of cancer highlighted in this article. Based on interviews with 38 women and men treated for cancer in Canada, this paper explores the experience of cancer survivorship through food. While most informants endorsed eating more healthily, they frequently had a broader understanding of healthy diets than prescribed in individualizing dietary recommendations and connected their experiences of food with values of healing. Perceived risks of an industrialized food system were embodied as cancer risks while eating natural, organic foods was seen as a way of healing themselves and engaging in an alternative, more ethical, world food system. In contrast to the demonization of sugar and processed foods, quinoa and other “natural” health foods were seen as “healthy” for bodies and for the world.

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This research was funded by an operating grant titled “Between Life and Death: the Contradictions of Cancer Survivorship” from the Social Sciences and Humanities Research Council. I was a research assistant working under Dr. Kirsten Bell, the principal investigator on the above grant, and I would like to especially thank her for all of her support and encouragement to pursue this paper. Dr. Kirsten Bell gave permission to use data collected from all the interviews and as such, I would also like to acknowledge the assistance provided by Svetlana Ristovski-Slijepcevic, Kirsten Bell and Shivinder Dhillon in conducting some of the interviews drawn on in this paper. The arguments presented in this paper were initially presented at the Canadian Anthropology Society Conference in May 2013 and benefited from the feedback of participants in “The Politics of Food: Local, International, Embodied” session.

Cancer survivorship and the centrality of food

1According to a study by Desantis et al. (2014), there were nearly 14.5 million people living with a history of cancer at the beginning of 2014, in the United States only; a rate that was predicted to rise to nearly 19 million individuals by 2024. The Canadian Cancer Society reported that cancer survival rates increased from 53% to 60% between the early 1990s and the late 2000s, and that 2.4% of the Canadian population were living with a previous cancer diagnosis as of 2009 (Canadian Cancer Society, 2016). Due to advances in prevention, early detection and treatment over the past two decades, cancer death rates have steadily declined by approximately 20% since 1991, especially among middle-aged men and women (Siegel et al. 2014). With a shift in viewing cancer from a “death sentence” to a “survivable life-threatening illness” and a growing population of people living with and beyond their cancer diagnosis, there has been increasing attention on cancer survivorship (Deimling et al., 2007).

2Cancer survivorship is often ascribed to an individual from the time of diagnosis through their life, though the term sometimes expands to include family, friends and caregivers also affected by the condition or defined more strictly as someone out of primary treatment for at least a year and had no evidence of the active disease (Dirven et al., 2015). The definition is controversial because the term is political in who it includes and the viewpoints it advocates (ibid.). The term “cancer survivor” itself is embedded with meaning as the National Coalition of Cancer Survivorship (NCCS) advocated replacing cancer “patient” with “survivor” as early as 1986 to encourage empowerment, action and advocacy (Twombly, 2004). Cancer was, in their eyes, a disease people needed to learn to fight, to empower themselves to make decisions about their care and to push for better research and treatment. Consequently, cancer survivorship is often expressed as a new way of seeing themselves and a transformation through suffering to a more positive orientation at life along with being an informed and active participant in their care (Jagielski et al., 2012; Deimling et al., 2007; Sinding & Gray, 2005; Twombly, 2004). Cancer survivorship care involved engaging, and supporting self-management as they shifted from early phases of diagnosis focused on cancer treatment to later phases focused on primary care and management of comorbid conditions (Mayer et al., 2017). With an emphasis on self-management, cancer survivorship can become an individualizing project, which is contested through the experiences of food as told by the people with a history of cancer highlighted in this article.

3Food is central to the cancer survivorship experience from changes in taste especially during chemotherapy but also after as diet is often changed. Since food and meals are central to the daily lived experience, changes in diet after a cancer diagnosis is often reflected as a big part of life after diagnosis. Research has suggested that eating at least five servings of fruits and vegetables per day, limited consumption of red meat, alcohol and processed foods may reduce risk to subsequent health conditions such as cancer recurrence, cardiovascular diseases, diabetes, osteoporosis and functional limitations (Demark-Wahnefried et al., 2012; Rock et al., 2012; Mosher et al., 2013). Consequently, healthy diets have become an important part of post-treatment support, counselling and care in North America. Healthy eating programs often include education on nutrition and the benefits of a plant-based diet, eating whole grains, reducing fats and red meats, training on goal setting and tracking personal eating patterns, and food literacy on becoming an informed consumer who can accurately read food labels (e.g. the popular Cancer Transitions program; Weiss, 2009). However, these programs may convey healthy eating as an individual decision and experience. Healthy eating recommendations may frame diet as an issue of correct and incorrect choices that individual people make based on neutral and objective information provided by their healthcare providers (Henwood et al., 2011) which fit into larger critiques that lifestyle interventions restructure ‘health’ as an individualized project emphasizing self-responsibility and discipline (Bell, 2012; Broom & Tovey, 2008).

4Although food, diet, and nutrition are commonly discussed topics in cancer survivor support groups (Nelson & Macias, 2008), there have been only a handful of studies on how people with a history of cancer perceive and experience food and eating. These studies are largely from Canada and focus on female breast cancer survivors. In a study with 14 breast cancer survivors, English et al. (2008) found that eating healthy, valued foods was seen as an important way of supporting a healing body. However, focusing on a group of female breast cancer survivors, Sinding and Gray (2005) found that health promotion messages generated feelings of guilt for getting cancer and responsibility for preventing its return largely through the emphasis on healthy food ‘choices’. The themes of guilt and vulnerability associated with food were also evident in the study by Maley et al. (2013) with 36 white female, mainly breast cancer survivors in Northeastern United States. In a qualitative study, they found that weight and dietary behaviours were a focus of self-blame, stress and vulnerability as some wondered if they caused their cancer and some felt overwhelmed by advice from well-meaning friends and family. Another factor that contributed to stress was the ambiguous, sometimes contradictory, information about the relationship between diet and risk of cancer recurrence. Additionally, a Canadian study with 38 breast cancer survivors noted a lack of attention to different ethnic diets or financial barriers to eating organic food and purchasing supplements, especially as visible minorities face income challenges due to discrimination in employment opportunities (Nelson & Macias, 2008). Interestingly, many of these themes were also apparent in Bell’s (2010) ethnographic study of Canadian cancer support groups for people with colorectal cancer, prostate cancer, metastatic cancer and Chinese cancer patients, suggesting that these tensions around food and eating are evident well beyond breast cancer. However, she did identify some gender differences in the ways men and women engaged with these discourses, with women focusing more on diet while men tended to focus more on exercise. For both genders, however, dietary self-surveillance had moralized connotations about cancer survivors’ bodies.

5With the exception of Maley et al. (2013), these studies did not focus specifically on food; rather, it was a theme that strongly emerged, emphasizing the need for a closer examination of food experiences within the context of cancer survivorship, given an environment of uncertainty surrounding diet and cancer risk. With a growing population of cancer survivors and a growing interest in promoting diet along with exercise to maintain a healthy weight, issues of food are becoming associated with experiences of cancer survivorship. However, as the few studies involving cancer survivors and their experiences of food have suggested, the emphasis on healthy diets has been individualizing and does not take into consideration social concerns and stigma. This paper, in contrast, explores meaning construction and the social contexts that shape understandings of diet and cancer from the perspective of cancer survivors. Within the charged context of empowerment and/or blame that cancer survivors often experience with dietary behaviour recommendations (Maley et al., 2013), sugar and quinoa were two foods that frequently came up in discussions, which represented and embodied moralized meanings used in negotiating a survivor identity. Healthy diets were understood as more than simply dietary food recommendations and led to contemplation of the meaning of health in the world today, especially in an atmosphere of uncertainty after cancer diagnosis and treatment.

The Study on the Experiences of Cancer Survivorship

6This paper is derived from a larger project examining popular and biomedical discourses on cancer survivorship and the ways they impact people with a history of cancer. The research took place in Vancouver, Canada, between 2010-2012 and included interviews with 38 women and men who had previously been diagnosed with cancer and had completed treatment. Participants were recruited through advertisements at cancer support groups, the local cancer treatment agency, an alternative cancer treatment centre, the YMCA, and a local newsletter. Face-to-face interviews were conducted in Vancouver, Canada. Participants also had the choice of a phone interview, due to preference, mobility challenges or if they were located outside of the Vancouver area. Fourteen participants chose to be interviewed by phone, including six out-of-province participants (four from Alberta and two from Ontario). Interviews lasted between one to two and a half hours and had a semi-structured format, with a set number of questions but also flexibility within each question to explore issues deemed important by participants. As a member of the research team, the author conducted 17 of the interviews. With the consent of the participants, all of the interviews were recorded and transcribed verbatim. All transcripts were analysed for recurring themes. When food was identified as a central theme, all transcripts were analysed again for recurring and evocative issues discussed with food and cancer. All names are pseudonyms.

7The semi-structured interview guide covered basic demographics, their experience of cancer and their experience of cancer survivorship including discussing supportive care, lifestyle changes and how participants felt survivorship was conceptualized in the health services, in the media and society and by themselves. Discussions of food emerged in response to a more general question about whether the participants’ lifestyles, including diet, exercise and use of alcohol and tobacco, had changed after their diagnosis. Consequently, food was discussed in all interviews at least with this single question. However, participants often brought up food in other parts of the interview, such as with food changes during treatment, in terms of support from loved ones and in society’s perceptions of cancer, suggesting that food and dietary changes was central to the lived experiences of life as a cancer survivor. 29 participants out of 38 brought up food outside of the question on lifestyle. Participants reported that they learned about healthy eating practices from doctors, alternative therapy centers, friends such as church groups and family members.

8Overall, of the 38 study participants, 8 interviewed were men and 31 were women. The participants’ age range was 34 to 73, with 37% (14) between the ages of 40 to 49. Participants included respondents who self-identified as Canadian, French Canadian, American, Italian, British, Hungarian, Dutch, Czech, Ukrainian, Irish, Scottish, German, Latvian, Polish, Chinese, Korean, Indian, Fijian, Ugandan and Metis (mixed race), with most participants (28) reporting a North American or European background. 9 participants were receiving social security disability benefits, 12 were retired and 13 were working at the time of the interview. 25 had university level education including both undergraduate and postgraduate degrees. Study participants included people who had previously been diagnosed with breast, ovarian, colorectal, lung, prostate, lymphoma leukaemia, sarcoma, head and neck, cervical and testicular cancers. Ovarian cancer survivors were the largest group, constituting 29% of the sample. Although the majority of participants were cancer free at the time of interview, 6 participants had metastatic cancers and some were dealing with recurrent disease.

9There were no clear connections found in this study between demographics, types of cancer and following healthy diet recommendations. The 8 participants who did not change their diet after cancer included 7 females and 1 male, came from diverse demographic backgrounds from achieving masters degrees to completing high school, income levels ranging from struggling financially on social security disability benefits or government-provided support (welfare) to $200,000 household income working as a corporate director, from stage 1 to metastatic cancer diagnosis and represented a variety of different cancers including colon, breast, liver, neck, lung, sarcoma, testicular and lymphoma. Additionally, the 18 participants who discussed the link between cancer and the industrial production of food were also of diverse backgrounds though it seems that relatively more men came to this conclusion than women (12 women, which made up 40% of the women interviewed for this study, and 6 men, making up 75% of the men interviewed).

Cancer survivors’ engagement with ‘healthy eating’ discourses

10Nutrition and food were central to the daily experiences lived by many participants in this study. In general, 30 out of the 38 participants mentioned changing to a healthier diet after their cancer diagnosis and 26 participants discussed how foods could help prevent cancer and cancer recurrences. An example is Lynn, a 60-year-old woman with chronic lymphocytic leukemia. As the interview began with Lynn, she quickly introduced a cookbook produced by a local alternative treatment centre as she told the narrative of her illness. Lynn spoke about how there was a lot of ambiguity with her condition as she “didn’t quite fit the pattern” and using healthy eating to boost her immune system gave her a sense of control:

The first chapter is all just stories of things that people did and survival stories… It starts to talk about changing your eating, and your food and how to do that. So instead of using, you know sugar, use Stevia, that kind of stuff… Like the first week it just says “Add a salad a day.”… You can do that. You know, second week you do this, and it just slowly helps you to tweak your eating habits and so on. So it was very good for getting me on the right course I think for eating, because I did a lot of research in the library too, and this seems to follow basically what they’re saying about eating healthy, trying to build up your immune system to fight the cancer”.

11For Lynn, surviving cancer is relived and reaffirmed each day in each bowl of salad and in each little package of Stevia used instead of sugar. As Lynn’s quote suggests, people generally endorsed messages presented in healthy food interventions and many talked about eating more fruit and vegetables and less meat. 6 participants spontaneously brought up how messages around food and cancer are empowering and brought up how it was their way of doing the best they could, a part of reconnecting with a more fulfilling life, a way of being proactive about their own health and as a way of regaining control over their lives.

  • 1 A green or purple leafy vegetable in the cabbage family (Brassica oleracea).

12However, in contrast to healthy eating as an individualized issue of correct and incorrect choices, participants emphasized the sociality of eating. Food was also a way of showing social support by friends and family as Lynn said about her family, “We joke about kale1. I eat quite a bit of kale. “Oh, you put kale in that soup, didn’t you?!” Yeah, I know, you caught me but [laughs]...but finding these recipes... mum will cut them out of the paper, particularly if there’s something like I’ve mentioned, like kale. She’ll cut things out of the paper for me because she knows that I’m trying to eat healthy”.

13Changing diets of an individual often also changes the meals for families as well. Georgia, a 43-year-old mother of three children who had been diagnosed with liposarcoma, said:

“We’ve adopted a lot healthier eating habits here in our house… You know I look into, and that’s reflected over into what our whole household eats now. You know, so my son, you know at Halloween, he went out trick or treating. You know when he came home… [we talked about how] sugar’s not good for you… We picked a few out and gave the rest away.”

14Holidays are often characterized by food, such as colourful chocolate Easter eggs and children going trick-or-treating for candy in costume during Halloween. Rather than a purely individual choice, healthy diet changes are often affected by families and occasions. This has also been vividly demonstrated in a study of couples that included men diagnosed with prostate cancer by Mróz et al. (2011), which found women’s instrumental support for men’s diet changes.

15While providing dietary information is one way family and friends can show caring, this may not be the type of support cancer survivors are looking for, as Elise, a 47 year old woman who was diagnosed with breast cancer, discussed: “I got sick of it... I didn’t want to see another cancer book as long as I lived, I felt like... Everybody’s telling you ‘Look, eat this, eat that, drink this, drink that’ and you know... I was always seeking, trying to seek for just a friend, just a friend’s support; like somebody just there, just somebody I could talk to, somebody to lean on.”

16It was especially frustrating for her because she felt that she had been eating quite healthily before her cancer diagnosis and complained that most people did not share meals with her so they did not actually know. Health eating recommendations can imply an unhealthy lifestyle before cancer diagnosis and consequently, assigns blame. Healthy food choices are not contained within wholly individual experience but form ways that identities are constructed and perceived. Sinding and Gray (2005) found that health promotion messages that permeate cancer discourse imply guilt for getting cancer and responsibility for preventing its return. Susan, a 60 year old woman, who in her words, was “'Little Miss Perfect', who was always eating the right diet and exercising and not smoking and seldom drinking...[and was] the one who got the Stage 3C colon cancer with the 11 lymph nodes”. She recalled a “blame” letter she got from an acquaintance:

“She ripped a shred off me and her whole thing was ‘What did you do to bring this on?! Tell me what it is, I don’t understand. I don’t understand. You tell me’ and you know, ‘Was it stress? Did you not eat right?’, You know, the letter was horrible… I did respond to her. But I remember at the end of the letter, I said to her, ‘You know, even if I’d done all those other things, if I had smoked, if I had drank, if I had you know, been eating Alberta beef, you know, would I be any less deserving of compassion?’

17Susan further discussed how changes in diet can be socially isolating: “It makes spontaneous eating with family or friends very difficult. I have to sort of plan like a military invasion now, or you bring your own food, which is even weirder.” Marie, a 55 year old ovarian cancer survivor, elaborated: “My mum sometimes yesterday she said ‘Oh, you know, I’ve got some pastries. Shall we have those with coffee?’ and because I’m trying to lose the 20 pounds that I gained during chemo, I said ‘No,” and she kind of like begrudgingly accepts that’. Bringing food is a way of showing support and care, and dietary restrictions can emphasize that health has not been fully restored.

18Additionally, similar to prior research findings (e.g. Nelson & Macias, 2008; Bell, 2010; Maley et al., 2013), participants in this study described an environment of uncertainty and vulnerability, both highlighting an important connection between diet and cancer risk but also emphasizing that there was much ambiguous, sometimes contradictory, information. As Marie further observed:

“I think the way the news media deals with scientific studies where you know, you just hear on the radio or in the newspaper, you just hear the little snapshot of it which is like ‘Oh, drinking more than five cups of coffee causes cancer’, and the next day you hear ‘Well, you know, drinking a coffee a day helps keep your blood pressure…’ you know, whatever.”

19Encountering conflicting stories about the connection between food and cancer was the most common reason for not changing their diet. Even though colon cancer is sometimes associated with food, Martha, a 69 year old woman diagnosed with rectal-colon cancer that had metastasized to her liver said: “I have no idea [what caused colon cancer], but there was some talk about certain food, but I don’t really believe it... They said like heavy food or you know... For years I’ve been trying to avoid very fatty or smoked stuff... I don’t think I eat, for example, any different than my husband… we eat the same thing [and he didn't get colon cancer].

20As not eating food can constitute illness, accepting changes in diet can mark the acceptance of a sick identity even after treatment is over, which can further reflect different roles in family and life. Returning to Elise, the 47 year old woman who was diagnosed with breast cancer, she spoke of how she rebelled against nutritional advice during her treatment, which was also in part due to difficulties eating with mouth sores during chemotherapy: “I think the more everybody said ‘not to do this’ and ‘not to do that’, the more I did it.” However, between her son's constant encouragement and going to a nutrition class for cancer survivors after treatment, she decided that “I wanted to do a lifestyle change”. Elise acknowledged that nutritional support was her son's way of caring for her and reflected on their roles being reversed and “He became more my caregiver and I became more the child [laughs].” Lin, a 59 year old woman diagnosed with sarcoma cited pleasure in eating. Her medical team had been concerned that she was very depressed during cancer treatment. Lin recalled telling her medical team that she will not commit suicide because she has yet to enjoy other things, like eating abalone, a type of shellfish considered a delicacy in Chinese cuisine. After treatment, she is inspired to live as a “normal person” and not as a “sick person”. Living as a “sick person” involved a restrictive lifestyle which included avoiding certain foods. Instead, she said she will continue to “seek to enjoy life”.

21Lastly, some changed their diet to improve their quality overall but remained skeptical that it had an influence on preventing cancer. For example, Mark, a 42 year old man who had been diagnosed with Hodgkins lymphoma and has since experienced a recurrence, said: “There’s certain things that you probably, I probably ate before that I just won’t eat anymore because they taste disgusting [laughs]. That probably has more to do with it than making some kind of conscious change around lifestyle and trying to prevent something in the future.” Returning to Marie, the 55 year old ovarian cancer survivor, she described her changed diet, “I eat less meat; I eat more grains, and I’ve expanded my choice of foods into, you know, like quinoa, and more kale and more vegetables and some organics” but admitted that “I have this constant battle with myself about food, you know. Should I go all organic and you know, and I tell myself I can’t really afford it, but you know, some of it is I just don’t, I don’t want to change all my things that I do. I used, I have always eaten quite healthy”. Marie also pointed out that she felt she has always eaten quite healthily so while her cancer survivorship experiences involves these struggles around food in order to maintain her health, she is also aware that healthy eating did not prevent her cancer and will not completely prevent a recurrence. With ovarian cancer, Marie discussed, there are very high rates of recurrence with or without healthy eating. However, she asserted that eating healthier would improve her quality of life at the moment.

22The stories of Lynn, Elise, Marie, Georgia, Susan, Martha, Lin and Mark above, provide a glimpse into the complex experiences of food in the lives of cancer survivors. Food was empowering for some who felt they could better control their health while others emphasized how they were stigmatized as people assumed their illness was from bad eating habits. Although most participants changed their diets in varying degrees to eat healthier, healthy diets were not simply an individual issue of correct and incorrect choices as participants emphasized the complexities of reconstructing health after a cancer diagnosis and how it was a continuous effort long after treatment ended. Instead of healthy foods as an individual project, participants tended to focus on specific “good” and “bad” foods, which suggest the importance of social-cultural meanings of food in the healing process.

Sugary devils and quinoa mantras

23Melinda is a 46 year old woman who was diagnosed with ovarian cancer two years prior to the interview. After her surgery and chemotherapy, she joined a support group for women with ovarian cancer. Nutrition was a strong component of support services and she found that avoiding sugar was stressed: “If I eat a candy bar, it’s going to kill me because sugar is the devil… for hardcore cancer patients, like sugar is the devil… totally limit it. They say half a teaspoon reduces immune function for up to two hours (emphasis added). Melinda recalled an event at the local cancer treatment agency that highlighted how sugar can be hidden and misnamed even in processed food products that are seemingly “natural” and good for you such as in “Nature’s Path” granola bars.

“I had a breast cancer patient sitting beside me at this thing at the Cancer Agency and I think it was Nature’s Path or had donated granola bars. So you know, they always, if we’re doing this long day thing they had a, they had some food for us, right, so they had platters of fruit and these granola bars. So this woman beside me had the granola bar and she goes ‘Oh, you know, this is fine’. And she goes ‘Oh well, it’s got cane something or other’, and I said ‘Well that’s sugar’, and she said ‘Turf it!’.”

24Frances was a 41 year old woman who was diagnosed with ovarian cancer five years before the interview and has since had two recurrences. The messages about certain foods promoting cancer weighed heavily on her mind. She talked about how eating foods with sugar in them gave her a sense of guilt. In her words: “Like one of the doctors… has said ‘You know, sugar is to cancer like fuel is to fire’, and I was like, ‘Are you serious?’ So am I going to have dessert every day? No. Every [time] for a while, I would feel awful even having it all. Now I don’t know what I’m going to do because, really, once a month? I don’t know. I don’t know.”

25This metaphor of sugar “feeding” or “fueling” cancer was echoed by Lynn whose narrative we discussed in the previous section:

“They say cancer feeds on sugar. Any kinds of sugar, not just white sugar but flours convert to sugar… I guess for cancer cells to multiply, they need a source, an energy source and so they need, well, from the reading I did, it’s sugars that, that’s what would help them multiply and so on, so you don’t want to give them too many… You don’t want to feed the cancer.”

26In this framing, sugar is not just bad, it is evil. It is malevolent and subverts the body’s defense systems. It is devious and hides in other types of foods. It is sinfully sweet and seductive but once allowed into the body, it can feed destructive, uncontrollable growth. Participants talked about sugar as something cancer survivors have to be especially vigilant against. The constant vigilance for sugar speaks to how sugar is hidden in many packaged foods that may not taste sweet (Mintz, 1985) and also to the centrality of fear of recurrence in the everyday lived experience of many cancer survivors (Sinding & Gray, 2005). Interestingly, though avoiding sugar was highlighted by cancer survivors, “little research has been undertaken with regard to carbohydrates, specifically starches and sugars, and cancer survival” (Demark-Wahnefried & Jones, 2008: 330).

  • 2 FAO. 2013. “2013 International Year of the Quinoa”, Food and Agriculture Organization (FAO), access (...)
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27Perhaps due to fears of recurrence, “bad” foods were discussed more often than “good” foods. However, in contrast to the demonization of sugar, there were certain foods that were viewed in a far more positive light, with quinoa often deemed to be a particularly “healthy” food. Quinoa (Chenopodium quinoa) has recently gained popularity as a health superfood, evidenced in the fact that the Food and Agricultural Organization of the United Nations (FAO) declared 2013 the International Year of the Quinoa2. Quinoa is used like a cereal but is from the Swiss chard family and has higher levels of protein, minerals and vitamins in comparison with other cereals. Notably, it is unique for containing all essential amino acids and is considered so nutritious that NASA makes it a staple of astronauts’ diets3. Touted as a “miracle grain for its near holy amino acid balance”4 and the sacred “mother seed” of the Inca5 discourses around quinoa seem to be associated with values of balance, completeness and holiness.

28For example, in the interview with Lynn, quinoa came up as the new hyped health food. She said, “Yeah, that’s the new thing. In fact, tonight I’m taking quinoa (laughter)”. She talked about bringing a quinoa dish to share with a circle of old work friends, many of whom are also cancer survivors. Likewise, the following excerpt from Melinda’s narrative revealed how quinoa was used by cancer survivors in her support group to show mutual understanding of a shared experience of cancer and being vigilant against sugar and cancer recurrence:

“I’ve hung around with the support group and it kind of makes you laugh… I went to the summer potluck (meal) last year and it was really funny. I’m thinking, well I should bake, I was always a baker, cookies and stuff like that, but I realized okay, sugar, you can’t give sugar to cancer survivors because that would just be bad…But it was funny, I go to this thing and I look at the buffet, when people have all come, and it was like whole of quinoa!... so it’s like the cancer patient’s mantra, quinoa.”

29Consequently, a shared understanding of which foods to support and which to avoid, that sugar is “bad” and quinoa is “good”, was community building and a way of showing support to each other as cancer survivors. Through values associated with certain foods, the group shared their fears of cancer recurrence and hopes for healing. In contrast to the devilish associations with sugar, quinoa is referred to as a cancer patient’s mantra suggesting its almost holy value for healing among cancer survivors.

Reordering health and the industrialized world food system

30In some respects, the demonization of sugar and emphasis on the purity of wholesome organic foods represents a means of certainty, of reordering a sense of health in an environment of ambiguous and sometimes contradictory health information. Douglas (1996) classically argued that society was structured through rituals and practices of purity and avoidance of pollution. Her classic example relates to Jewish dietary laws where animals that transgressed categories were considered polluting and were forbidden to eat. Consequently, in observing dietary laws, one would be inspired to consider the purity and completeness of God and His creations; thus, holiness was given physical expression at every meal. Both cancer cells and discussions of processed food full of hidden chemicals and sugar can be considered expressions of pollution. For example, growth is not inherently bad but growth of cancer cells is bad because they grow beyond what is considered normal and consequently are dangerous to health. Instead of polluting refined sugar, which crosses food categories by being hidden within numerous foods products and may promote mutation of body cells, quinoa as associated with purity. The values associated with quinoa reflects the marking of boundaries: “organic” to discuss the impurities of chemicals in food, “natural” to reflect the prevalence of processed foods, “wholeness” with complete essential amino acids to reflect on foods that contain only calories without nutrients such as sugar. Purity and pollution construct each other as rejecting inappropriate elements, reproducing systems of purity, with margins and transitional states consequently considered dangerous (Douglas, 1996). Cancer survivors occupy a transitional space between health and sickness, where they have survived or are surviving a serious medical condition but still considered on the margins of wellness. As such, food can be especially dangerous because it is consumed into the body and becomes part of the body. By avoiding sugar, which is seen to “feed” cancer, cancer survivors are constructing health after their cancer diagnosis and treatment.

31Food is an especially intimate relationship because food crosses “the frontier between the world and the self, between ‘outside’ and ‘inside’ our body” in a process of incorporation (Fischler, 1988: 280). The reordering of health through the foods eaten expresses a concern of contagion, that purifying or polluting properties could be transmitted to people through association and contact, similar to ideas of sympathetic magic first discussed by early anthropologist Sir James George Frazer in the classic text, the Golden Bough (Frazer, 1963), and shown to influence health decisions by Rozin et al. (1986). Giving the examples of antibiotics and hormones in meat, Fischler (1988: 281) discussed fears of how food “unadvisedly incorporated may contaminate him, insidiously transform him from within, possess him or rather dispossess him of himself”. Though Fischler was not talking about cancer, the discussion of how foods can contaminate and the sense of dispossession of their own bodies was vividly reflected in what participants said in the study. Ruth, a 57 year old woman with metastatic lymphoma cancer, said that cancer “is the weirdest [disease] because it’s our own body we’re fighting”. As Ruth indicates, cancer transforms people’s relationships with their bodies because there is an internal struggle between properly functioning cells, rogue cells and the immune system that is trying to fight and control the rogue cells. Returning to Lynn, the 60 year old woman with chronic lymphocytic leukaemia further elaborated:

“Cancer is a disease, it’s in your body, but it’s not who you are... so don’t, don’t claim it, you know, the cancer. That something, those cells in my body are not doing what my body wants it to do. My body wants them gone, what can I do to encourage my immune system to get them out of there and, or at least not take over, you know. If they’re going to be there okay, but don’t let them, try not to get them to take over. So, I guess that’s where that sugar thing comes in and anything that even in your head that you think is supporting this cancer, try not to do that.”

32Candice, a 37 year old woman who had been diagnosed with early stage cervical cancer said: “I’m kind of [paranoid] with cleaning products, like disinfectants and stuff, and I also stopped eating meat, especially pork… because of [the] chemicals and antibiotics… So I’ve definitely cut out meats. I can’t remember the last time I had chicken…” For Candice, the chemicals that can be found in meat have changed the very substance of meat to something that is less food and more similar to disinfectant cleaning products. This reflects Rozin et al. (1986) discussion of sympathetic magic where food is associated with chemicals and consequently, it becomes polluted and polluting as discussed by Douglas (1996).

33Furthermore, as Lynn and Candice’s quotes above reveal, the emphasis on the properties of purity or pollution of certain food highlights the complexities of agency and dispossession in the relationship between cancer, food and bodies. Though people are empowered to make the decision to eat more healthily and help their bodies combat cancer, there is a sense of dispossession as the site of action was inside their bodies and people themselves were somewhat removed. It is a battle between the immune system and rogue cells which as Lynn says, is “not who you are.” Sugar and chemicals infiltrate and contaminate bodies, insidiously transforming cells and dispossess people of their lives. Cancer was discussed in themes of disconnection and dispossession between people and their bodies. Returning to Georgia, the 43 year old liposarcoma survivor, she said: “I was really mad at my body because I thought, okay like why didn’t you take care of this body? Why do these tumors keep growing back in you? I was really kind of just angry at my body for not being stronger or better preventing, you know, not breaking down those cells, killing off those cells.”

34In contrast, sugar and other polluting properties are discussed with agency to corrupt cells and feed cancer. The properties of agency and dispossession suggest that the continual struggle for healing is not only an individual process but also one that reflects wider systems in the world around them. Taussig (2010) argued that with commodity fetishization, people become thingified while things became personified to emphasize the lack of control within the modern capitalist market economy. Using the example of a devil pact made among peasant labourers on sugar plantations in Colombia to increase their immediate production though that growth was seen to be ultimately barren and destructive, Taussig (ibid.) argued that the devil imagery symbolized and critiqued their exploitation within the emerging capitalist market economy. While there can be some similarities drawn with the devilish associations of sugar production and the discussion of rapid growth that is ultimately destructive between Taussig’s example with Colombian peasants and Canadian cancer survivors, the main addition of Taussig to the structural arguments of Douglas (1996), Rozin et al. (1986) and Fischler (1988) is the lens where social history cannot be separated from the symbolism or value imbued in an object or image. The sugar/quinoa dichotomy not only acts to restructure health but also manifest an underlying worldview that critiques how modernity has moved far from “nature”, the root of ill health including cancer.

35As cancer survivors discussed processed foods with devilish connotations, they were also commenting on the industrialization of the world food system where food can be produced more efficiently, transported farther, packaged for longer shelf-life and processed cheaply but the purity of food and health are compromised. Mintz (1985) suggested that sugar epitomizes the transition into the modern, capitalist world system. As a source of quick calories and an additive to make bitter stimulants more palatable, such as coffee, Mintz argued that the rise of refined sugar is intimately connected with the development of the working class during Industrialization. Today, sugar continues to be found as a sweetener and filler in many processed, pre-packaged foods. The “evils” of sugar are related to the process of commodity production itself and are often expanded to other industrially produced food items. As Georgia expressed:

“We, you know, we really, you know, there’s no white sugar, there’s no white flour, there’s no processed food in our house anymore. I like to grow my own vegetables as much as I can. We grow our own chicken, I buy beef from a local farm, I try really hard to avoid preservatives, toxins, chemicals. I think chemicals might be a really bad thing for my body, so I try to eat really pure, healthy food.” (emphasis added)

36Almost one in every two participants interviewed discussed the industrial risks of cancer especially in the production of food. Interestingly, of the 18 who discussed the external environmental risks of cancer, only three of these people rejected dietary changes after their cancer diagnosis suggesting the relationship is complex. Polluted food is an external environmental factor, but because food is ingested into the body and becomes a part of it, it also becomes an internal factor and consequently, there was often a worry about the industrial process of food production polluting bodies. For example, Tom, a 63 year old male with colorectal cancer, emphasized that we live in a “toxic culture” and Lynn stated cancer is “part of the ill of our society of living at this time and the world’s history.” Many participants expressed concerns about “unnatural”, industrialized food wherein food properties had been changed in the refining process, with food containing hidden chemicals and sugar and where the production and process of food before appearing at the local supermarket was also largely unknown. Sanjit, a 61 year old woman with breast cancer, felt that issues with food caused her cancer and indicated that something was wrong with our environment and food because we do not know where it is grown or how long it is packaged before it reaches us. Frances, who experienced anxiety with desserts after a doctor told her that “sugar is to cancer like fuel to fire”, reflected that there are many risk factors in our industrialized world that are not discussed with the same attention as individual risk factors such as healthy diets. According to Frances:

“I kind of get irritated because when you go to, or you read about cancer prevention, it’s all on the individual. You know, if you exercise or if you eat more vegetables, and I guess maybe people are really unhealthy I don’t know. But then I’m like… how about you don’t put poison in our shampoo, in our makeup, in our food, in our soil in our air, in our carpets, like all that stuff. Like in the power lines, it’s all that, I feel like it’s a whole other part that isn’t addressed.”

37Similar to the fears of sugar being hidden in refined and processed foods that may feed cancer, the quote above highlights that there are poisons hidden in our food and daily objects we interact with. For instance, Janice, a 35 year old woman with a history of ovarian cancer, talked about how margarine was only “a couple molecules away from plastic.” She said: “People have to die from something. It would be great if it was old age, but [it is unlikely] in this day and age with our processed foods.” She talked about the failings of the health care system and constraints on eating healthily due to availability and accessibility:

“So you have the health care system these days that still allows, well for one thing, cigarettes to be purchased and knowing the linkages and the linkages to EPA and plastics… Just instead of doctors being educated in a way that only deals with symptoms, let’s treat the cause… It’s all really small things that could be implemented even at a young age that will help change the courses of our future, going back to remove crappy food from the schools and cafeterias and having more delicious healthy options, going back to nature and living from the earth, more farms, more farmer’s markets.”

38Like others, Janice viewed eating healthily as stemming from greater connections with nature and the production of food. Fischler (1988: 285) previously discussed how through cooking, “food is marked with a stamp, labelled, recognized – in a nutshell, identified. ‘Raw’ food is fraught with danger, a ‘wilderness’ that is tamed by culinary treatment” by adapting it to the conventional rules of a particular cuisine. However, with cancer survivors, there is a critique on the modern culture of food, processed beyond cooked, where the boundaries between food and industrial product are blurred. “Modern food has become in the eyes of the eater an ‘unidentified edible object’, devoid of origin or history, with no respectable past – in short without identity” (Fischler, 1988: 287). There is consequently an expressed need to go back to more natural. While Janice did not deny that healthy foods might contribute to preventing cancer, she reflected on social constraints rather than individual choice: how “crappy” food is found in schools where children cannot avoid it.

  • 6 In the FAO Year of the Quinoa in 2013, there were a few media articles released that aimed to shed (...)
  • 7 FAO. 2013. “2013 International Year of the Quinoa”, Food and Agriculture Organization (FAO), access (...)

39In contrast to the dangers of an industrialized food system where the identity of the food item is not exactly really known, quinoa represented an alternative food system that is considered more natural and pure with elements of wholeness in its nutritional content but also in its process of production. While there have been recent concerns that the export of quinoa has increased local prices6, quinoa is marketed to epitomize a “healthy” food that was ethical, natural and sustainably grown by indigenous Andean farmers7. Many participants emphasized organic, sustainably grown foods, “happy meat”, growing their own vegetables and buying from local farms. Even though the relationship between organic foods and risk for cancer is inconclusive (Magkos et al., 2006), it was often highlighted by participants when talking about healthy diets. Janice, for example, said: “There’s a lot of things that I’ve changed. I look for foods that are grown in sustainable communities, I look for foods that are grown in places that use less pesticides. I try and go organic as much as possible.” Marie echoed this emphasis on ethical consumption. Healthy food recommendations include limiting consumption of red meats (Pierce et al., 2007; Rock et al., 2012); however, for Marie a “healthy” diet could include some meats, provided that they were “ethically” produced: “They say you can have some meat, provided it’s, you know, grain fed, happy meat (emphasis added).

40Within a more holistic perspective of healthy eating, participants argued that dietary recommendations of eating five servings of fruit and vegetables per day were only a part of what “healthy” meant. There was an emphasis on consuming organic, natural, ethical and sustainably produced foods and by doing so, they consumed values of health in the sense of wholesome purity. Food becomes a way of acting on the body as a site of healing internally (English et al., 2008) and the emphasis on organic foods is an example of sympathetic magic influences on health decisions where the association of purity and well-being is sought. However, it is also a way of commenting on and acting to heal an external world around them. In an environment of ambiguous health information where participants often emphasized that little is actually known about what caused their cancer, the demonization of sugar and processed foods in contrast to the purity of wholesome, organic foods represents a means of certainty and reordering a sense of health internally and externally. Though engaging in discourses surrounding organic, “ethical” foods, cancer survivors may express a sense of connection to a larger community of producers and consumers in constructing an alternative to the industrialized world food system (Beagan et al., 2010).

41However, the romanticization of organic, ethical foods in the participants’ accounts can also be problematic because of the class connotations contained within the moral positioning of healthy, organic foods in opposition to fast foods: “Good foods is out of the economic and cultural reach of non-elites” (Guthman, 2013: 497). Packaged, processed foods are often cheapest while buying organic, locally produced foods, vitamins and supplements are more expensive. Poverty can constrain food choice and the emphasis on organic food can create further stress on people. With the moral positioning of organic foods as a part of the choice to be healthy, the stress of affording to take care of himself or herself becomes individualized and internalized. In other words, though alternative discourses on cancer and its causes can open up opportunities for holistic therapies and patient-centered healing, the continued emphasis on free choice, such as to eat organic food, can have some of the same individualizing and coercive effects as the dominant public health lifestyle frame (Broom & Tovey, 2008).

Conclusion

42With an increasing number of people living past their cancer diagnosis, there has been growing attention on cancer survivors’ lifestyles, especially diet, to improve well-being and reduce recurrence risk. However, without contextualizing the meaning people attribute to food with their experiences of illness and society’s conceptualization of diet and cancer, dietary food recommendations characteristic of psycho-educational programs for cancer survivors can become an individualizing practice that can relate to issues of guilt and blame. While some people report that they feel empowered by being able to control potential future cancer risk through modifying the food that goes into their bodies, others experienced more guilt and stigma from society because having a cancer recurrence suggested a lifestyle failure in some way. With either case, however, the responsibility for having a healthy body, free of cancer was placed on the individual, which was unfeasible, especially for certain types of cancers that have high rates of recurrence such as ovarian cancer. Subsequently, this can create barriers of understanding between health care practitioners who are making the recommendations and those living with a history of cancer.

43While participants often endorsed eating more healthily, they had a broader understanding of a healthy diet than prescribed in individualizing dietary recommendations – one that spoke to a negotiation of health and identity after cancer diagnosis and treatment. The narratives around food and cancer presented in this paper complicates the singular vision of an empowered cancer survivor identity who has been transformed by her illness struggles into a new reinvented, more positive and healthier self “like a phoenix rising out of the ashes” (Jagielski et al., 2012: 455). Instead, the constant battles over health expressed by dilemmas of food, highlight the continued daily struggles of a cancer survivor and the process of reconstructing health rather than a state of health after finishing cancer treatment. In contrast to healthy diet interventions that focus on the individual, participants frequently discussed social relationships, values and meanings associated with food, meals and health. The processes of food production became embodied in the production or damage of healthy bodies – quite literally in some respects as foods are broken down to become the building blocks of bodies. When cancer survivors sometimes discussed sugar with devilish connotations, they were in part commenting on the industrialized global food system where little is known about where food comes from and what chemicals or hidden sugars may be in food. In contrast, quinoa and other natural health foods were seen as healthy for bodies and also the world. In participants’ accounts, the physical and social body were intimately connected, as risks of industrially produced food items were embodied as cancer risk and eating organic foods was seen as a way of healing their bodies but also engaging in an alternative, more ethical, world food system. In other words, within narratives of food, participants shifted the individualizing focus of healthy diet promotion interventions to a wider social sphere of the toxic environment created by an industrialized food system. Fischler (1988: 281) wrote that “Not only does the eater incorporate the properties of food but symmetrically, it can be said that the absorption of a food incorporates the eater into a culinary system and therefore into the group that practices it”. Not eating food constituted illness thus the restrictions on diet identifies the cancer survivor as continuing to be sick and marks a change from the earlier pre-cancer identity. With dietary changes recommended to individuals, it suggests that cancer is located in individual bodies and becomes identified with certain people. By shifting the emphasis to avoiding polluted foods, participants interviewed in this study resisted identifying with cancer and instead connected their illness with a larger movement of critiquing modernity and its industrialized food system.

44However, although cancer survivors’ narratives about food elaborate on the more social dimensions of food and eating, there was a tendency to romanticize organic, “ethical” foods, the consequences of which require further study. Though the present paper did not find any clear relationship between demographic backgrounds and engagement with healthy eating, there can be more systematic investigation into the social inequalities of health and healing, especially since healthier foods including fresh fruit and vegetables and organic foods are more expensive than processed foods. Future research can also further investigate gender dimensions as proportionally more men cited environmental industrial risk than women but the sample of men interviewed in this exploratory study was too small to come to a conclusion. This article contributes to the literature on food and cancer as a paper dedicated to the lived experience of food and modifying diets highlighting the voices of cancer survivors and finds it to be a fruitful and rich area for potential future research.

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Notes

1 A green or purple leafy vegetable in the cabbage family (Brassica oleracea).

2 FAO. 2013. “2013 International Year of the Quinoa”, Food and Agriculture Organization (FAO), accessed March 19, 2017 [http://www.fao.org/quinoa-2013/en/].

3 EVANS P. 2013. “Quinoa boom offers hard lesson in food economics” CBC News, accessed March 19, 2017 [http://www.cbc.ca/news/business/quinoa-boom-offers-hard-lesson-in-food-economics-1.1358699].

4 HEFFERNAN V. 2013. “How many Bolivians are dying because foodies love quinoa?”, Yahoo News, accessed March 19, 2017 [https://www.yahoo.com/news/how-many-bolivians-are-dying-because-foodies-love-quinoa--184648929.html].

5 HERRINGTON D. 2013 “Seven Reasons Quinoa is the New Health Food Superstar”, Huffington Post, accessed March 19, 2017 [http://www.huffingtonpost.ca/diana-herrington/7-benefits-of-quinoa_b_3363619.html].

6 In the FAO Year of the Quinoa in 2013, there were a few media articles released that aimed to shed light on problems with quinoa production such as Evans P. 2013. “Quinoa boom offers hard lesson in food economics” CBC News, accessed March 19, 2017 [http://www.cbc.ca/news/business/quinoa-boom-offers-hard-lesson-in-food-economics-1.1358699]. However, that there are news articles that aim to expose harsh realities of quinoa production further demonstrates how quinoa was marketed as an ethical food.

7 FAO. 2013. “2013 International Year of the Quinoa”, Food and Agriculture Organization (FAO), accessed March 19, 2017 [http://www.fao.org/quinoa-2013/en/]

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References

Electronic reference

Mai-Lei Woo Kinshella, « Quinoa Buffets and Sugar Devils  », Anthropology of food [Online], Online since 23 July 2017, connection on 20 August 2017. URL : http://aof.revues.org/8181

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About the author

Mai-Lei Woo Kinshella

Department of Anthropology, University of British Columbia, Canada, m.woo@alumni.ubc.ca

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Copyright

Licence Creative Commons
Anthropologie of food est mis à disposition selon les termes de la licence Creative Commons Attribution - Pas d'Utilisation Commerciale - Pas de Modification 4.0 International.

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