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Cancer at the Dinner Table

Experiences, Senses and Emotions of Laryngeal Cancer Patients (Spain)
Le cancer à la table du repas. Expériences, sens et émotions de patients atteints d’un cancer du larynx (Espagne)
El cáncer a la mesa. Experiencias, sentidos y emociones de pacientes con cáncer de laringe (España)
Lorenzo Mariano Juárez, Julián López García et Carmen Cipriano-Crespo

Résumés

Depuis un peu plus de trois décennies, le rapport entre alimentation et cancer a fait l’objet de nombreuses études quantitatives conduites par des experts médicaux dans les champs de la nutrition et du cancer. Cependant, les récits et les expériences des patients sur le lien entre le cancer et la nourriture, ainsi que les émotions associées au processus alimentaire – entendu comme un fait total social, sont encore trop peu étudiés. Cet état de fait est l’expression d’une certaine cécité vis-à-vis de ces thèmes. Ce texte se fonde sur une ethnographie de l’expérience alimentaire d’un groupe d’hommes atteints du cancer du larynx en Espagne. Nous analyserons ici les ressentis et les signifiés qu’ils donnent à la perte de « normalité » de leurs pratiques alimentaires, les sentiments et émotions qu’ils ressentent, la crédibilité octroyée à la nutrition et aux recommandations des professionnels de la santé ou leur rejet. Des notions telles que la honte, la stigmatisation ou l’identité renforcent l’idée qu’une attention particulière doit être portée à ces expériences qui passent habituellement derrière les besoins physiologiques.

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Texte intégral

Introduction

1These days, the relationship between diet and cancer is a frequently addressed topic. As though we were talking about an “old marriage”, there are very few questions relating to the diversity and complexity of the shapes such relationships take. However, research has focused on certain approaches/visions that have been established as hegemonic, and being the most valuable. Public health and nutrition have been laden with trying to explain these approaches. The first of these, of course, has strived to elaborate on the connections between what we eat and the effect that this has on the etiological processes or on the means of preventing disease. The strong link between diet and cancer first compiled in the early 1980s was incorporated shortly thereafter into American health policy (Wheelock, 1997: 448). In a paper by the National Cancer Institute, it was already noted that 35% of all cancer deaths are diet-related (Bidlack, 1996). Nutrition was not just central to the etiology of various cancers, but was a crucial means of prevention: the same report pointed out that, in the year 2000, 30,000 lives could have been saved with just a change in certain dietary habits, amounting to 8% of the total expected mortality rate. Dietary changes have since become a fundamental topic in the strategies for fighting disease. Since then, decisions about what we eat or the way in which we prepare foods are linked to more or less healthy lifestyles that determine theoretical possibilities of contracting diseases. These studies have centered on pointing to the benefits of different foods, or even of culinary traditions like the Mediterranean diet (Sofi et al., 2008), as well as the dangers resulting from the consumption of others. So well established is this relationship that it has been used by the food industry as a mechanism for labeling quality, creating “healthy” brands in order to lure the consumer (Muñoz Gonzalez & Mariano Juarez, 2008). Other approaches have been concerned about the impact of cancer on the nutritional health of the body or, in other words, the impact that disease has on the nutritional processes (Marín Caro et al., 2007; Alonso Castellanos et al., 2014). The vast literature on cancer anorexia-cachexia syndrome, for example, is already commonplace, but herein we will also include works that have already focused on the problems resulting from treatment, such as the nausea and emesis linked to radiology and chemotherapy (Haro et al., 2013). The scope of these contributions is, however, marked by a nutritionist focus, one which we could call the “dominancy” of the discourse surrounding caloric balances, macronutrients and physiological necessities. From this viewpoint described in the literature recent efforts seek to reconcile the links between genes and particular diets, or the importance of concrete dietary practices in the treatment of certain cancers. Comparatively speaking, there have been far fewer studies that distance themselves from physiology and the body, placing this relationship within the scope of the social and the cultural. From these perspectives, the topic is dominated by works that seek to recognize the “representations” of cancer, therapeutic regimens or those that delve into the analysis of the means of prevention. Nonetheless, the dietary experiences of patients afflicted with cancer, the emotional climates that envelope the dietary process – understood as an entirely social phenomenon – are conspicuously absent, at least until now.

  • 1 The three main types of treatment for managing head and neck cancer are radiation therapy, surgery (...)

2More recently, works have begun to proliferate in biomedical literature under topics such as “cancer, diet and experience”. Though they are still in the minority, we are starting to glimpse an interest in more inclusive definitions of medical evidence (Flores Martos & Mariano Juarez, 2016) in keeping with the “narrative turn” of medicine and the emergence of Narrative Based Medicine (Greenhalgh & Hurwitz, 1998; Goyal et al., 2008; Mariano Juarez, 2012) at the end of the last century. Studies such as that of Morley and Neufeldt (2001) have pointed to the need to go beyond the biological in order to conceptualize the context and the problems of the dietary experiences of a group of patients, among which were four people with cancer, which involved emotions, social roles and finding personal meaning. There was limited research about the lived experience and the changed meaning of food, eating and the experience of eating after treatment for patients with cancer at the start of the 21st century. The works of Larsson and colleagues (2005, 2007) also pointed to the realm of experiences, though essentially articulated in terms of the difficulties and not so much the meanings assigned by patients to food and dietary practices. The scant works from this approach have centered on social and emotional implications for cancer sufferers limited to areas that clearly intervene in dietary processes. Patients who have received treatment for HNC (Head and Neck Cancer)1 often experience a significant disruption in their lives with regard to eating and the changed meaning of food. In the systematic review by Ganzer and her colleagues of the few published qualitative studies along these lines, “consistent themes emerged in regards to the lived experience post-diagnosis and treatment for HNC; disruption to daily life, the diminished self, uncertainty and waiting, sharing the burden/support, psychological well-being, and finding a path/uncertain future” (Ganzer et al., 2015: 634). Some works published within the biomedical realm have begun to underscore how the relationship between diet and cancer includes not just physiological elements, but psychological, social and cultural elements as well (Ottosson et al., 2013). Some of these approaches have helped draw attention to processes until now considered secondary or irrelevant. These works have signaled transformations in the meanings assigned to food and the act of eating, an activity that loses pleasurable characterizations and is therefore transformed into a burdensome process requiring effort and attention – a “struggle” in which one has the sense of losing control of life (Malmström et al., 2013). Eating becomes onerous, a once routine activity that now takes longer, requires more energy, and is also stressful; a space at times recreated by the apprehension or fear of dysphagia (McQuestion et al., 2011; Ottosson et al., 2013). In other occasions, the idea of fatigue unfolds into metaphors of uncleanliness. In the words of one of Ottosson’s sources: “you are always unclean in the mouth, food sticks around your tongue, you have to clean and rinse, it is almost like a full time job…” (2013: 1036). Eating, previously understood as a source of pleasure, consequently becomes a powerful stressor, a space and a laborious time in which satisfaction is negated. Dietary experiences become incomplete because many foods are prohibited, or are considered dangerous. Here the links between food and cancer raise questions resulting from the loss of taste, but also others in which the notion of “the pleasure of eating” has also been impacted by the length of time required to eat, the embarrassment of eating in front of others, and the resulting anxiety (Lang et al., 2013). The incursion of illness not into the body or into dietary practices, but into life itself can be deduced from what eating meant to one of the sources of the research by Roing and her colleagues (2007): “the worst time of the day is when I eat… it is really tough… nothing tastes good anymore. It is hard to eat… it is absolutely the worst time of the day.”

3The realms of physiology in medicine expand timidly into the phenomenological spaces of individual experience, but also into the contexts and the meanings of sociability and the impact on the identity construction of the self. Food and the surrounding daily experiences prove to be central to the processes of interaction that define identity or self-image for cancer patients. Some works have underscored that shrinking of spaces of sociability (Winkler, 2010; Ottosson et al., 2013, Ganzer et al., 2015), recreated under metaphors of the nostalgia or stress caused by this loss: “Friday night and Saturday would have been a big family thing for us – video, pizza, whatever and great conversation. Everything stopped straight away, even the conversation. Mealtimes in general were stressful. The whole thing, it is woeful” (Semple et al., 2008). From our point of view, these studies grapple with the challenge of including these other spaces of relationships between cancer and food, but they should delve into more thorough contexts – the categorical inclusion of the “emotional turn” – and, above all, in the process of the cultural understanding and interpretation of proposed categories of analysis.

Methodological notes

4This work, which is qualitative in nature, intends to describe, analyze and interpret in-depth interviews that we conducted with twelve men suffering from laryngeal cancer. We are interested in knowing the various ways in which illness and treatment have impacted their lives; and, more specifically, the ways in which they feed themselves (cf. Table 1).

Name

Age

Sex

Diagnosis

Evolution of Cancer

Jesús

55

Male

Squamous cell carcinoma of the pyriform sinus

Symptoms began in March 2013

Diagnosis in January 2014

Bilateral draining and tracheotomy Chemotherapy and radiation

Javier

60

Male

Laryngeal cancer

Symptoms began in December 2007 Diagnosis in 2008

Bilateral draining and tracheotomy

No radiation or chemotherapy

Ramón

60

Male

Laryngeal cancer

Symptoms began in September 2014

Complete draining in January 2014

Five sessions of radiotherapy

Mariano

55

Male

Laryngeal cancer

Symptoms began in February 2014

Diagnosis in July 2014

Total laryngectomy

Chemotherapy and radiation

Luis Miguel

66

Male

Laryngeal cancer. Total laryngectomy

Diagnosis in January 2013

Operated on in July 2013

6 months of radiation and chemotherapy

Luis

59

Male

Laryngeal cancer

Diagnosis in May 2012

Total laryngectomy

No radiation or chemotherapy

José Manuel

54

Male

Laryngeal cancer

Symptoms began 2013

Diagnosis in September 2014

Operated in December 2014

Chemotherapy

Fernan-do

71

Male

Laryngeal cancer

Diagnosis in September 2011

Operated in January 2012

31 sessions of radiation

Antonio

65

Male

Laryngeal cancer

Began 2009

Multiple interventions in 2012

Total laryngectomy

Aurelio

77

Male

Laryngeal cancer

Began in November 2011

Operated in March 2012

Removal of vocal chords, larynx, and pharynx

Samuel

75

Male

Laryngeal cancer

Symptoms began 2004

Operated in January 2005

No chemotherapy or radiation

Gerardo

60

Male

Laryngeal cancer

Diagnosis and operated in May 2014 Received 20 sessions of radiation Bilateral draining

Table 1: Information on sources. General notes.

  • 2 The majority of the interviews were conducted in a spacious and comfortable room in a speech therap (...)

5They all currently live in the Spanish region of Castilla-La Mancha. Through a semi-structured, open-topic questionnaire2, the interviews constituted an invitation to narrate their experiences with food in their lives and at their dinner tables since the emergence of their illness.

6Throat cancers rates in Spain are not among the most prevalent: by gender, the four most common cancers in men were those of prostate (22.4%), colon-rectum (16.6%), lung (15.1%) and urinary bladder (11.7%). In women, the most common ones were those of breast (28.0%), colon-rectum (16.9%), corpus uteri (6.2%) and lung (6.0%) (Galceran et al., 2017). Throat cancer affects men in far greater numbers, constituting around 3.5% of all cancers diagnosed in Spain, a fact explained by the difference in tobacco use between men and women. Nonetheless, the most recent statistics show that Spain has the highest rates of laryngeal cancer in the world (Seorl-CCC, 2016, Chatenoud et al., 2016). In cases where treatment includes chemotherapy and surgery to remove the larynx, there is a considerable impact on patients’ lives: loss of voice and diminished sense of taste and smell. In these cases, illness disrupts lives in a way that statistics simply don’t reflect.

7The people interviewed were contacted through cancer survivor groups and family members of cancer patients in the region. Well beyond formal criteria, the themes discussed – illness, disability, emotivity – require a particularist approach to a partially structured interview, which allows us to create an intimate space for conversation. No other way would be appropriate for a study in which some of the subjects will not be able to read its conclusions.

8Herein we address the processes of “relearning” to eat, the struggles and confrontations with food, the emotional climates and feelings generated by dietary relationships, the notions of loss created, and the restructuring of sociability. From this perspective, the meanings assigned to new ways of eating recreate the definitions of the person and should be regarded as indispensable knowledge for clinical practice.

A new throat/a new mouth… and a new body

9Many of the participants face the fact that their mouth is no longer their mouth. This, of course, has dramatic repercussions. The mouth is a physical, but above all social, space where one articulates speech, breath and affection. That same mouth that eats also whispers confessions or kisses a loved one. We see that concrete anatomical space lose some of its functions, which inevitably completely changes the person’s place in the world. In our sources’ stories, it is possible to underscore the fears generated by the loss of one’s voice, the denial or the fight to recover it – puzzled, for example, upon waking up from an operation to receive a piece of chalk as a gift. Phoniatricians, speech pathologists and their texts (Marina, 1996; Membiela et al., 2016; De la Iglesia et al., 2006) are fairly familiar with this issue and its importance. Unfortunately, they are less familiar with the repercussions of the mouth that kisses and the mouth that tastes the world we know. As we pointed out before, health professionals had only fairly recently begun to concern themselves with nutritional problems, understood in terms of caloric balances and macronutrients, but we know little of the effects that the outbreak of illness has on experiences linked to pleasure, to the enjoyment of foods. Brillat-Savarin long ago noted the distinction between the pleasures of food and the pleasures of the dinner table (2010: 196) and we know, as Le Breton has rightly noted, that “cuisine gives people sustenance in a dual sense, insomuch as it also affixes to them the sense of identity” (2007: 276). For our sources, as for many others, their mouth is no longer their mouth, and this, above all, calls into question the very notion of the self.

10The laryngeal cancer patients with whom we have worked struggle to fight against the idea of a “useless” mouth, defective and diminished. They stubbornly dispute the recommendations of professionals who veto certain foods, becoming distressed by not being able to savor foods they once enjoyed, if not capable of sensing flavors and with them the social world these flavors recreate. If the emotional is recreated through diet in individual contexts (Zafra, 2015), these stories exhibit unease, fear, and loss, which become part of the self. In the last few years, the field of anthropology has moved beyond the now-classic approximations of this distinction to debate the cultural character of the senses and their capacity for recreating culture and identity (Howes, 2014; Sutton, 2010); through our mouth we form cosmologies, world views and ways of life. If we are to believe Le Breton, for whom taste is the sense of differentiation and the gustatory sensation “invokes a meaning: it is at once a familiarity and an affection found in action” (Le Breton, 2007: 268), then the new mouth seems to fall short in that commitment to what is perceived. And it’s not the mouth that fails us, but rather the body, a new body in which one must negotiate the self all over again from the beginning. Some of these accounts are similar to those offered in the study by McQuestion (2011: 147), which described: “a sense of loss and emotional suffering associated with what they couldn’t do or eat. They had lost the capacity to enjoy favorite foods, and the previously felt and expected pleasure and satisfaction associated with eating was gone.”

11For some, the new mouth or the new throat requires a new learning process. The impacts of illness not just on the body, but rather on life, imply the need to develop new strategies in order to be able to eat liquids without swallowing, for example. The time devoted to food grows longer, and the formerly social space marked by pleasure or the routine is converted into something tedious, arid, and also dangerous. The stories of fear of not knowing how to eat, of failing, of choking are many and are experienced from a place of suffering and fear. The mouth, the throat and, by extension, the body are converted into something that can no longer be trusted.

12It seems as though here we have amassed a new category: the flavors of a diminished body, a useless body, an unreliable body. This is because the mouth could fail in its capacity to perceive flavors, or by causing fear due to the failure to swallow; but in other cases, it simply disappears, replaced by a completely different mouth, such as a stoma or plastic tube. A new mouth, a new body. In these cases, accounts center on the complete loss of the emotionality of food and the ways of the dinner table. Worries are intensified by the fact of not knowing how to manage the technical process, though the person themselves or a family member soon take charge of it. But the new mouth shows the signs of absence, of shortcoming in the body. Eating ceases to be what it was and becomes something else, while one’s memories or dreams are populated by the ways of yesterday. The new mouth and the new body require more focus, including that of presenting oneself to the rest of the world in the most adequate manner possible.

13“We should do it for everybody else, for the ‘healthy people’ who may not like to see open wounds in the body. We have to be careful and exquisite in our social behavior. We can’t clean the mucus out of our stoma in front of everybody. For example, when I’m in a bar, I go to the bathroom and I remove it in there, but there are people who aren’t careful and they do it in front of everybody else, and I can tell from the look of disgust on their faces that this provokes a certain rejection in people” (Javier).

14The new mouth provides its most immediate service. It satisfies one’s biological demands, but at the expense of profound losses. Recreated through the rhetoric of the incomplete, it draws the stares of others and positions the body in a distinctive place, separating the two. Many of the sources describe how they give up on going out to eat at restaurants, or decide to eat alone, without the stares or company of others. Just as other works (McQuestion, 2011; Lang et al., 2013) have described, this social loss is a recurring theme. In this way, the new mouth can contribute to nourishing the caloric demands and hydrating the skin that envelopes that body, but it is incapable of satiating the symbolic and cultural demands, creating a social space that becomes progressively smaller. Our sources seem to go from “I sink my life into your mouth,” as Miguel Hernandez wrote, to “my life drowns in this new mouth.” And from here, one begins to reconstruct a new body, a new “me”.

New foods and new ways of eating

15The new body requires – and is at the same time a consequence of – different meals and transformations in the ways of eating. The outbreak of illness entails adjustments – some temporary, others permanent – in dietary habits. Changes affect the selection of what one eats, the means of preparing food and of chewing it, of ingesting it, or of swallowing it. Alongside all of this is the emergence of updated culinary tools, of which the syringe and the infusion pump stand out. Consider, for example, the case of Aurelio who, after a three hours surgical procedure, came out of the operating room with sharp pains and a nasogastric feeding tube through which he was fed twice a day. As we can imagine, translating food into the third person reflexive tense is quite complicated. Aurelio felt satiated, but that way of eating caused in him weariness and rejection: “I wanted to eat for myself, grab a spoon and dig into a big bowl of lentil soup, fill it and raise it up to my mouth, tasting it and enjoying the food.”

16That desire to again eat as they had done before is shared by many of the sources. Javier, for example, fought to stop eating through his feeding tube, telling his doctors that it was causing him great pain. The solution was a gastrostomy, a much-appreciated change, even though it still didn’t mean a “return to eating.” From then on, he ate through an enteral feeding tube, a novelty in the culinary topographies of his home, closer to those of the hospital.

“… now I eat through my belly. They plug me into the device I’ve got, a few bottles of prepared food that you have to buy in the pharmacy, they give it to me and it drips down, they give it to me twice a day, it’s my daughter who’s responsible for doing it. You have to shake the bottles well so that what’s inside mixes well and can drip without clogging the tube. She has to take it out of the fridge a while beforehand so that it isn’t very cold because at first we weren’t that careful and it dripped down into me all of a sudden, I noticed it was very cold, and it made me a little sick to my stomach when it dripped down. I have to be seated with my head up straight to allow the food to drip down, and I need to be in that position for at least an hour after eating…”

17Food is not purchased in supermarkets, but rather in pharmacies, a food that one can’t taste, but rather one which barely drips down. With it comes a new corporal discipline, transforming the dining room into something removed from the emotivity of yesterday. Eating becomes a process requiring special care, which is attended to by Javier’s daughter or even sometimes by Javier himself, but which can’t be skipped over because it would provoke a blockage in the feeding tube. This care consists in injecting a small amount of water into the tube with a syringe so that no food particles remain. Artificial feeding through the infusion pump and gastrostomy tube does not improve Javier’s perception of feeling fed. What he’s left with is the feeling of loss, of not eating:

18“I don’t get the sensation of eating. For me, seeing a food, smelling it and tasting it doesn’t just nourish me on a nutritional level, but it also helps me to conjure memories, feelings and emotions of the times I ate that food and this, with this new way of eating that I been dealt, I can’t do it. This way of eating that I have now… it fills me up… it takes away my hunger… but… it’s not eating…”

19These new ways of not eating feed the body because, from a nutritional perspective, they provide necessary dietary elements, but they provide little or nothing to help satiate the cultural hunger that food also satisfies. Fischler (1990: 64) described “incorporation, as the movement by which we make the border between the world and our body, the outside and the inside, pass through food. To incorporate a food is, in the real plane as in the imaginary plane, to incorporate all or part of its properties: we become what we eat”. Le Breton (2007) wrote that the mouth is a borderline between the outside and the inside. The construction of meaning through the “tasting” of the world becomes threatened by a form of eating that invalidates textures, flavors, smells or pleasures. Ramón confessed to us that he came to “cry from hunger,” evoking the symbolic and cultural importance of what eating is, well beyond the nurturing of the body:

20“I came to cry from hunger. What they gave me via syringe didn’t fill me up and also since I didn’t put anything in my mouth, this wasn’t eating for me. I don’t really remember whether or not I noticed the temperature of what they said was food, when it passed through the feeding tube. What I do remember clearly was how I begged my wife to feed me for real and how it took two more weeks for this to happen.”

21The new forms of eating imply the incorporation of new regimens: a drier mouth means having to drink liquids more frequently or cut food up into tiny pieces. Luis, for example, felt the need to break up his noodles. Or also include new foods; boil instead of fry to make the food softer, etc. Others had to learn to swallow the excess saliva that they produced in their food and chew everything that they put in their mouth very well. Some of the accounts delve into the idea of “focusing” on the process of chewing and swallowing while eating. What was once done routinely and unconsciously now demanded effort and attention, which meant paying less attention to dinner conversations or an overwhelming effort that resulted in unfinished meals due to exhaustion or boredom.

22The weariness and fatigue mix with fears. For Javier, this began just after surgery, while he was still in his hospital room. Illness has interrupted his life in such a brutal way that he began to feel afraid upon discovering that he didn’t know how to eat:

23“I remember the first time I started eating by mouth again in the hospital. I was scared because I thought that something was wrong with me while I ate the soup. They brought me a tray with a chicken fillet and a bowl of soup. Since I felt like eating, I naturally dug into the chicken and I didn’t have any problems, but when I started to eat the soup I got very scared because I didn’t know how to eat soup, I couldn’t sip it. Since my lungs are separated from my mouth there isn’t any air and when I grabbed the spoon and raised it to my mouth, soup spilled down my lips. I asked myself what was going on…”

  • 3 Here we transcribe our source’s use of the Spanish phrase “se me hace una bola, which roughly tran (...)

24Dysphagia abruptly invades the specter of the edible, limiting choices of taste. Eating or drinking is no longer what one wants or savors, but rather what one is capable of eating. Fernando was prescribed thickening agents for liquids due to his risk of choking. However, when forced to choose between thirst and disgust, he chose the latter, an expression of the imposition of culture on physiology: “I understand that it wouldn’t be good for my body, but the thickener is so disgusting that it’s too much for me.” After leaving the hospital, Antonio wanted with every fiber of his being to once again eat grilled chicken, one of his favorite foods. His sister cooked it for him, but what he had imagined turned out to be very different in reality and the difficulty chewing and swallowing made it so he could barely enjoy it. It was an emotional climate marked by disappointment, to the point that he never ate it again, because “now se me hace una bola3, as Antonio said. It even happens when I cut it apart a lot, it bugs me that I can’t eat it, but it’s impossible to swallow it. I end up having to go to the bathroom to remove it, and that anguishes me and it’s unfinished business in my daily life, and my sister becomes nervous when she sees that I can’t eat the food.”

25The anguish and disappointment caused by this loss is passed on to the family and the space of sociability. This is because eating, let us not forget, is also a social act.

Envy, shame and the limits of culinary humanity since laryngeal cancer

26Some cancers, like the kind we have considered, do not just involve a modification of the external and visible “me”, but also of the internal and invisible self. The body is modified but so are the sensations through which senses are perceived. That modification affects many aspects of life but it notably and radically interferes with culinary normality. If this modification of the body greatly affects how the world sees these sick people, then the affectation of the senses provokes substantial changes in the way they see the world. In general, they see an uglier world.

27With regard to laryngeal cancer, there are a few feelings that are more prevalent and which, in relation to food, have been highlighted by our sources: envy and shame, essentially. One of the most intense changes described is the loss of sense of smell. In some ways, this signifies losing a large part of individual memory and many emotional points of reference often associated with losing the pleasure of eating.

28Mariano explained to us how he began to lose his sense of taste during radiation, how foods began to taste like “lead” in his words, “it seemed like I was eating glass in some foods.” Little by little, he again began to taste somewhat once radiation ended, but things didn’t completely go back to normal for him: he lost some of his sense of smell and, even though he can smell strong odors, he misses many other smells like, for example, the smell of grilled chicken, which he greatly enjoyed because he identified it in his personal life with celebration and joy. Jesús, on the other hand, remembers how before he got sick, he really “began to eat” from the moment he starting cooking; to cook and smell the aromas was a way of anticipating culinary pleasure. Now he feels like he’ll never be a cook again. Without a sense of smell you cannot be a cook, he says.

29Not being able to smell has repercussions for the sense of taste. It’s not that it’s lost, but it is converted into something basic and without emotion. One can distinguish the basic flavors that we’ve established in Western culture (sweet, salty, bitter and sour) but not the cultural markers of a food that allow us to determine if it something is good or not, if something is more or less “flavorful.”

30This sensation of loss provokes two situations that have to do with feelings and that impinge on the construction of the self. On the one hand, there’s the impossibility of automatically activating feelings of nostalgia and melancholy while, on the other hand, the emergence of the socially logical, though sometimes unhealthy, feeling of culinary envy. Some of them miss the smells and tastes of their favorite foods, foods from childhood, their grandmother’s cooking… foods that connect the self to a sentimental biography that remains to be dwelt on since it cannot be recreated. Nostalgia bursts forth from the loss and not from pleasure and the food.

31This sense of loss can lead to envy, to the person’s detriment. Someone who once could smell and taste – but who no longer can – imagines how others should enjoy eating, they recreate the pleasant landscapes of their past life relative to the foods that others are currently eating… that sometimes provokes feelings of envy just as we have been told by Rafa and other patients with whom we have worked. When Rafa was admitted to the hospital, he was alone in his room, and did not see – nor did he want to see – anyone eating in front of him, and he appreciated that because, given the envy he felt, it would have been much more painful to have “someone next you eating a nice sausage sandwich” like the kind he used to enjoy. As we have stated, culinary envy, in spite of being logical, at times becomes unhealthy since it places emphasis on something that degrades the “I” and thus degrades the sense one has of themselves compared with everyone else. If you combine envy with shame, a feeling we will touch on in a moment, the impact on the cancer patient is so overwhelming that it can end up unraveling them socially.

32It is well understood that food is an act of great value to social interaction. Commensality is one of the strongest expressions of sociability, one of the most important cultural manifestations that allows us to see that someone is a social being. To eat together means proving one’s social standing in their interaction with others. By eating “next to someone,” we know that we are in a group, we feel surrounded by friends and we construct versatile and clearly human identities. That happens during any collective meal but it is all the more transcendent during the meals which occur outside of everyday life. That is, even though all meals have a socializing value – after all, the dinner table is a place of convergence and interaction – that value increases during holiday meals and special meals both inside and outside the home which imply the presence of people not normally around and which give reason to think of the multiple senses of belonging of the self beyond the nuclear family: a sense of belonging to one’s extended family, for example, that can be expressed in a birthday dinner, a belonging to an age-based group during a dinner with friends, a professional belonging at an “office party” dinner. These are meals that require different protocols than the usual ones at home, and imply integration and bonds with a different kind of diner: different things are eaten, there are more diners, they drink other things, they talk more, etc. As Grignon (2001) has pointed out, commensality is one of the techniques by which identity can be defined and preserved. The dinner table is established as a space for social action and therefore is governed by rules: table manners are denoted by the correct and the incorrect, by rhythms, by hierarchies… the convergence of interaction at the table, especially during parties, is affected by the presence of cancer. In the Spanish context, the relationship between food, identity and commensalism are so intimately linked (Contreras & Garcia, 2005) that, in this context, the impact of an illness is even more pronounced.

  • 4 There are numerous references to the social stigma linked to cancer and associated with shame. See, (...)

33Within the context of culinary sociability, the ethnographic evidence of our investigation reveals people who gradually reduce situations of mealtime bonding. There is an ever more rapid tendency towards the restriction of meals in groups, a growing attitude towards participating in meals with a reduced number of diners. This is quite possibly one of the most harmful social effects of cancer, especially laryngeal cancer. Just as they have told us, many laryngectomy patients think that they are a nuisance to these collective meals. If the idea of commensality underscores the fact that all must be equal participants in order for a collective meal to fulfill its objective of being a “good meal,” then cancer patients think that they are a nuisance to the group and tend leave it. According to our sources, the feeling of being a nuisance is a consequence of developing a sense of shame in social culinary4 interactions. Feeling that people are looking at them funny while they eat, feeling that they make strange noises, thinking that the mucus in their trachea could come out at the dinner table, considering that they cannot interact conversationally – these are some of the reasons that make them feel excluded, or cause them to exclude themselves, from the dinner table.

34When they speak of nuisance, they are especially referring to two expressions of culinary shame that have to do with technique and aesthetics. As they have declared to us, many laryngectomy patients eat in a way that could be considered aesthetically unpleasant, and others eat in an inappropriate way according the conventional manners of the dinner table. From this comes the sense of being a nuisance, the feeling of shame.

35With respect to aesthetics, there is something that they frequently cite: they make what they consider to be an unpleasant noise; a noise that causes them to think that others might be disgusted while they eat, or even that they might scare young diners. Rafa, for example, avoids commensality with small children because, according to him, a little 3 year-old-girl living next door to him has not wanted to speak to him since the surgery because he scares her with that cavernous noise that emerges from inside his body. Similarly, they say that their tracheotomy hole can be unpleasant to others during a culinary interaction. Like many patients, Mariano has used neck scarves to cover his tracheotomy because he does not think it is pleasant for anyone. Jesús comments that in regards to the tracheotomy hole, patients have to be careful and delicate in their social behavior. He maintains that he has been with patients at the bar having a drink, and they have cleaned their stoma in front of everyone with total disregard.

36With regard to the ways of eating at the social dinner table, they mention not being able to follow the normal rhythms of the meal nor the conversation: they speak slowly and eat in a much slower and more deliberate manner. To them, this anomaly feels like an affront to their mealtime pleasure and like something that can affect the culinary pleasure of the other diners. Felipe mentions that every once in a while he gets together with friends to eat, but they look for a quiet place to go because if not, he has to be silent since people cannot understand him and it bothers him. It is like this to such an extent that he no longer feels like going out to eat in groups.

37The social meal imposes measured rhythms upon the other diners (Locher et al., 2010). In the home, while the patient eats their everyday meal in domestic privacy, they pace themselves, chewing food more calmly, breaking it down into many small pieces so that it can be swallowed more easily. But, in collective meals, their rhythms can affect those of everyone else. Some of our sources cite their fear of choking from eating too fast, a fear more social than physiological since they understand that it can alter the culinary tranquility of the other diners. For example, it happened to Luis once while he was eating with friends and he had to leave the table and go to the bathroom to either remove the food by vomiting, or swallow it. He knows that some become nervous and begin to do this at the table. That, he says, cannot be pleasant for everyone else eating.

38This sense of shame becomes ever greater and leads them to painful extremes like the decision to no longer sit down to a meal with anybody, a drastic move within the Spanish context: “I no longer celebrate anything with loved ones… just my children’s birthdays… we don’t celebrate anything because everyone knows that I feel bad because I can’t eat like everybody else, and I avoid the suffering by not celebrating anything with a meal, which was how I used to celebrate everything in my house…”

39Shame then leads to culinary loneliness, with all its negative repercussions. What we might call “culinary animalism” is expressed in the individualism and the loneliness. Not just eating alone, but also doing it at any moment and in any way (without manners). On the other hand, the establishment of a social consensus affecting ways of eating is implicit in the communal meal. Eating alone is a clear example of exclusion and therefore, if it does not activate certain individual and collective mechanisms; it is, as Jesús said, “an illness that separates you from society”.

Conclusion

40Our sources’ narratives support the thesis that delves into the need to pay attention to the cultural experience of eating versus the fact of “nurturing” the body. The laryngeal cancer sufferers describe with regret the differences between what “eating really is” compared with what eating is not, a process transfigured into a routine task that simply needs to be done, but one that was devoid of all social, cultural and emotional significance. It is a here and now where one eats pharmacy-bought food through an “artificial mouth,” using a new set of tools closer to the cold atmosphere of a hospital than to the warmth of the home. Textures that do not just hinder emotivity, but which place the person in infantilized spaces where it is necessary to relearn something they had already learned. From this perspective, new technologies for eating, and the new bodily techniques deployed at the dinner table sweep away traditional dietary methods, but also place in jeopardy the very notion of sociability.

41These accounts underscore how the culinary specter of what one eats becomes much narrower as a result of what one must eat and what they can eat. This is a fatal gastronomical distinction for the new valuations of food and the social existence that surrounds it. But also, what one eats is perceived as somehow “defective,” lesser: it is not simply the impact on the perception of taste, the enjoyment lost, the smells and the palatability, but the dilution of memories, feelings or emotions, in the process gobbling up the cultural world that we associate with foods.

42Mired in these feelings of loss from which they narrate the process to rebuild a new culinary normalcy, the sources reclaim the value and the importance of “truly eating” through the process of resistance and struggle – patients that eat prohibited foods even though they put their lives at risks, or those that seek new strategies for recovering the emotions and pleasures of yesteryears, for example. The sadness and longing mixed with unbridled feelings of envy and shame, recreating the stigma surrounding the new gastronomical distinction applied to those who seat cancer at the table, a table increasingly distant from the parties and festive meals, from going out to restaurants, from the dinner conversations without stares.

43Health professionals wrapped up in the therapeutic process ought to give prevalence in their practice to these stories of affliction, considering them as first-rate evidence and including them among the patients’ needs worthy of their attention. In them we find crucial information – the emotional world demolished by a “tasting of the world” that’s lacking, or by the importance of the family or social networks to the process of rebuilding normality, to cite a few. In placing the world of the phenomenological experience at the same level as biological demands, the needs to attend to become greater and more complex, but of course the overall health would be worth achieving and the impacts on these patients’ quality of life will only be achieved if one attends to these other needs.

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Notes

1 The three main types of treatment for managing head and neck cancer are radiation therapy, surgery and chemotherapy. The primary treatments are radiation therapy, surgery, or a combination of both. Chemotherapy is often used as additional treatment or adjuvant. The optimal combination of the three treatment modalities for a patient with head and neck cancer depends on the site and stage of the disease. In general the side effects of radiation therapy appear about two weeks after starting the course of treatment and may consist of sore throat, loss of taste, and dry mouth and skin. Sore throat is the main side effect that makes radiotherapy difficult (cf. https://www.radiologyinfo.org/sp/info.cfm?pg=hdneck ).

2 The majority of the interviews were conducted in a spacious and comfortable room in a speech therapy clinic which served as “gatekeeper” for the study. Some were also conducted in a cafeteria or in the home. The bulk of the fieldwork was done in summer 2015. All the interview subjects signed consent forms, after having been informed of the objectives of the research. Generally speaking, the interviews were done individually though, in some cases, a family member was present. Some sources had previously participates in the doctoral thesis project by Carmen Cipriano, dietary ethnographer of disability, who is just about to defend her thesis.

3 Here we transcribe our source’s use of the Spanish phrase “se me hace una bola, which roughly translates to “it turns into a ball on me.” This phrase is often used in the second person as a taunt by children in the school cafeteria, to poke fun at someone when that person chews and chews their food without swallowing it. We have maintained the original phrase in context.

4 There are numerous references to the social stigma linked to cancer and associated with shame. See, for example, Cordella & Poiani (2014).

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Référence électronique

Lorenzo Mariano Juárez, Julián López García et Carmen Cipriano-Crespo, « Cancer at the Dinner Table », Anthropology of food [En ligne], mis en ligne le 06 août 2017, consulté le 23 septembre 2017. URL : http://aof.revues.org/8198

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Auteurs

Lorenzo Mariano Juárez

University of Extremadura, Cáceres, Nursing Department, member of GEESA (Grupo de Etnografía y Estudios Sociales Aplicados),lorenmariano@unex.es

Julián López García

National University of Distance Education, UNED.Madrid, Anthropology, member of GEESA ; jlopezg@fsof.uned.es

Carmen Cipriano-Crespo

University of Castilla La Mancha, Talavera de la Reina Nursing Department ; member of GEESA ; MariaCarmen.Cipriano@uclm.es

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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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