Sickness and the social network : friends and family experiences in supporting patients in the stable phase of incurable cancer

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Sickness and the Social

Network:

Friends and Family Experiences in Supporting Patients in

the Stable Phase of Incurable Cancer

Written by: Michelle van Eijk

Student Number: 11219254

Academic Advisor: Danny de Vries 2nd_{reader: Trudie Gerrits}

3rd_{reader: Hilde Buiting}

Submission Date: 26-06-2018 University of Amsterdam

Graduate School of Social Sciences

MA Cultural And Social Anthropology (Applied)

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Summary

This ethnographic research focuses on the experiences of social network members of patients with an incurable form of cancer. In particular, the research focuses on the experiences of disease, temporality, friendship and social support. The goal of the research is to contribute to a more holistic understanding of what social networks and social support can contribute to a patient’s well-being. This research emphasizes the experiences of the members of the social network due to a lack of current research on this matter, while social network members are often closely involved in the decision-making on the treatment process of patients. Their experiences will be viewed as intersubjective as explained in existential anthropology.

Likewise, the use of the typology of sickness, disease and illness in medical anthropology will be used to elaborate on these experiences. The first section focuses on how members of the social network experience and reflect on the disease cancer and the temporality of the ‘stable phase’ in which their relationship to the patient is situated. Next, the focus will shift to the relationship between patient and social network member, either as friends or family members, and the negotiation of the social network members of patients as patient and person. The last section, calls for a focus on support, rather than care in friendship relations, and outlines some of the ways in which this support is manifested. These sections all build on each other in order to illuminate the workings of the intersubjective aspects of the lived experienced of friends and family of patients with regards to how they experience the disease cancer, the stable phase, their (friendship) relationship, and social support.

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Acknowledgements

First of all, I want to thank all the people who participated in this research. Thank you for opening up your lives to me, especially regarding such an emotional and sensitive topic. Next,

I want to thank the Antoni van Leeuwenhoek hospital, and Hilde Buiting, for giving me the opportunity to work with them and contribute to the research on the well-being of human beings. Third, I would like to thank my academic advisor Danny de Vries, for guiding me through this very intense process. And lastly, but not least, I want to thank my family and friends for supporting me and picking me up when times were particularly challenging. Thank

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Plagiarism Declaration

Declaration: I have read and understood the University of Amsterdam plagiarism policy [http://student.uva.nl/mcsa/az/item/plagiarism-and-fraud.html?f=plagiarism]. I declare that this assignment is entirely my own work, all sources have been properly acknowledged, and

that I have not previously submitted this work, or any version of it, for assessment in any other paper.

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Prologue

Sitting in the train, on my way to my first interview, I was not feeling nervous. The day before I had made sure that I had my interview list prepared and that my recording device was working. In fact, I was feeling rather excited. This was it: the moment that my research would start to get real. While google-maps guided me on my way through the residential area where Marion lived, my first participant, I checked my bag again to see if I had everything ready. With an open-mind, and not really sure what and who I was about to encounter, I pressed the

doorbell. A woman in her forties, opened the door with a smile, greeted me, while I stepped over the threshold as I introduced myself. Marion was the daughter-in-law of Sarah, a patient

with incurable lung-cancer at the Antoni van Leeuwenhoek hospital. Sarah has two adult sons, of which Marion was married to the youngest. She and her husband also have two

adolescent kids. She welcomed me in, and asked if I was interested in a cup of coffee. I thankfully accepted the coffee and, of course, the obligatory biscuit that accompanied it. As we sat down at her kitchen table I asked her if she would mind being recorded, to which she replied she did not. My plan for the interview was for it to see where it was going, as I did not

yet knew what I could expect. About an hour and a half later, finding my way back through the residential area and searching for the bus stop, I felt… Well I don’t really know what I felt

to be honest. Marion had given me a glimpse of her life, and all that comes with it. Sensitive information, struggles, emotion and vulnerability, as a result of an accumulation of adversity

that had come down on her and her family. As I left her house, thanking her for her honesty and openness, I felt a pang of guilt for leaving her behind, in this vulnerable time and moment

in her life. Sitting in the bus, I realized, or perhaps even more than that - I experienced the understanding that these were not just interlocutors that participated in a research, these were people. People, or in this case, Marion, who had trusted me, with her thoughts, emotions and vulnerability. In the end, I guess I felt quite humbled by the whole experience. Leaving the bus and walking the rest of the journey home, I wondered about the interviews that where still

to come, or rather, about the people that I was yet to meet. My research had become very real, indeed.

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Introduction: The “Total Social Fact”

The incurable phase of cancer is an extremely intense and sad period for both patients, family, friends and hospital staff. Although often times research in this phase is focused on the patient or doctor-patient relationship, this research will focus on the experience of the members of the social network of patients. Little has been written about the perspective of the social network from an anthropological point of view. It is important that research is conducted on this topic, since an increased understanding about the world of those that care for patients on a personal level (hopefully) will enable an increase in adequate support in such a distressing period. In particular, this research will focus on how the members of the social network experience the extended process of the end-of-life phase for terminally ill cancer patients. The “extended process”, or “stable phase”, refers to the development of medical techniques that help increase the duration of the end-of-life phase. Nowadays, life expectancy of patients is growing

steadily in the Netherlands (Buiting et al 2016:1). One of the institutions that is conducting research on this development is the Antoni van Leeuwenhoek (AVL) hospital in Amsterdam. They are a hospital specialized in cancer research and are currently investigating what the extended life phase means for patients in their daily life, since often most of them physically feel quite fit, but still have to deal with the ramifications of cancer. Likewise, the members of the social network have to manage these ramifications too while simultaneously manage their day-to-day ‘healthy’ lives. This is what the focus of this research will entail.

Within anthropology cancer is already often referred to as a chronic illness, although often with regards to the individual, personal history of cancer in relation to the social sphere (Petryna 2015). As Manderson and Smith-Morris (2010) explain: “The use of the term

remission rather than cure draws attention to cancer’s chronicity” (p. 14, original emphasis).

In other words, the chronicity of cancer lies in the uncertainty of remission at any moment as well as the mental, physical or social injury it has caused. Moreover, since the members of the social network are frequently and closely involved during the stable phase in providing care and support as well as in the decision-making process, some researchers call for more in-depth research on the role of relatives and friends (Wijnhoven et al 2015). Therefore, my research question focuses on how the members of the social network of cancer patients in the stable phase of incurable cancer negotiate and renegotiate social support. What I mean by ‘negotiate’ and ‘renegotiate’, is the ever-changing ideas of the members of the social network in how they view the patients as well as how they experience support-giving. Second, social support refers to all the intentional activities that are projected towards the well-being of the

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7 patient. Furthermore, I want to stress that I will be referring to the person in the stable phase as ‘patient’, not because I want to invoke passivity or dehumanization, but to make clear the distinction of the two worlds that the members of the social network and patient have to navigate through: that of the ill, and that of their ordinary daily lives (Mol et al 2010).

Disease, Illness, Sickness

Whereas cancer is circumstantial and an instigating factor, forcing one to renegotiate oneself and ones relationships, the reactions to this circumstance involve active and unconscious ideas about cancer itself, relationships and support. In other words, members of the social network are constantly negotiating and renegotiating, either consciously or unconsciously, their

relationship to the patient, dependent on their worldview, relationship to the patient, and other contingencies of daily life. Disease, and cancer in particular, is a complex phenomenon. This complexity ties in with the medical anthropological debate on how the scientific medical world makes distinctions between the terms ‘disease’, ‘illness’, and ‘sickness’ (Yew & Noor 2014). I am using the anthropological typologies of disease, illness and sickness in this thesis in order to examine how the members of the social network experience their situated

relationship to the patient during the stable phase of incurable cancer. The complexity of disease relate to the cultural and social ideas attributed to cancer that might cause, for instance, (miss)understandings and representations about the disease which influence the relationship between the social network and patient.

According to Lochlann Jain, a medical anthropologist who specializes in

understanding US culture through cancer, it is a biological condition and disease, but also: “a process and a social field, (… ) with brutal effects at the level of the individual experience” (2013: 4). The non-biological aspects of cancer, that is, the social aspects, relations and emotional difficulties that come with the disease, are all to be taken into account if we want to understand how the members of the social network of cancer patients navigate through the stable phase (McMullin 2016). In order to elucidate the extensive and permeating aspects of cancer, Jain (2013) borrows Mauss’ concept of the ‘total-social fact’ to explain the ways in which cancer is interwoven with every aspect of human life ranging from the way we organize our daily lives to the way we politically engage or arrange our economic expenses (p.13). Thus, not only does cancer resonate in the everyday lives of people, it is also

influenced by major economic and political structures that tie in with hospitals,

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8 in the biological aspect to the total social fact relates to the theoretical discussion on the concepts of disease, illness and sickness (Yew and Noor 2014).

Disease, in Western biomedical terms, entails the physiological malfunction of the body. This biomedical model assumes that disease manifests itself the same regardless of locality and personal experience (Yew and Noor 2014). Illness refers to the subjective individual experience of the symptoms and the emotional, personal meaning attributed to the disease by the patient. This subjective experience is partly influenced and determined by social and cultural backgrounds and partly influenced and determined by personal traits. These factors influence the response of the individual to the disease and likewise the way they seek medical attention (Yew and Noor 2014). Lastly, sickness illustrates how health and ill health are defined by society. Sickness is a social construction that is constituted by both disease and illness together with societies norms and values. Additionally, society attributes a complementary social role to sick people to which they adhere - the sick role - that also plays a role in how they perceive themselves and their disease. However, important to keep in mind is that this distinction is only made within scientific context and often used interchangeably by laymen (Yew and Noor 2014) .

Arthur Kleinman, a well-known and leading author within the medical anthropology, has coined explanatory models of sickness as cultural systems which can be further used to elucidate the multilevel relations of the complexity of disease. Whereas disease is associated with medical professional explanatory models, to explain the physical malfunctioning of the body, the patient and social network of family, community and the like, experience disease through the explanatory models of illness and sickness which emphasizes the non-technical and subjective life problems as a result from disease. Illness is also culturally constructed and therefore behavior and experience of the disease by the patient are contingent on the way the patient and his or her social network explain, valuate and respond to the disease (Kleinman 1978; Kleinman et al 2006). He provides an example of the Chinese cultural setting that highly stigmatizes mental illness. In the research a Chinese man enters the hospital and explains he experiences discomfort from some physical symptoms. According to the Western biomedical model, these symptoms could be attributed to mental illness, however, the patient himself reduced his discomfort to physical malfunction only. The way he understood and experienced his symptoms together with his expectation and evaluation of the treatment were in this case dependent on the cultural conceptions of the symptoms (Kleinman et al 2006).

The multilevel relations of disease, illness and sickness, particularly the relation

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9 notion of intersubjectivity in existential anthropology. Apart from recognizing individuals as being formed by collective political, historical and social processes, existential anthropology recognizes individuals as inhabiting deeper layers of consciousness and thought that might not be immediately visible (Jackson 2013). These deeper layers of consciousness and thought are formed and transformed in the interaction between our inner worlds and those of others and the world around us (objects, nature etcetera) (Jackson 2013). That is, thoughts and

consciousness about ourselves, others or even objects is not a one way construction but a mutually constituting process. However, there are several matters that need to be taken into account with regards to intersubjectivity – social relations are both harmonious and

problematic, they are fluid as well as fixed, and individual as well as social (Jackson 2013). In other words, a human’s life and interactions with oneself, others or objects are not mere outcomes of circumstance and contingency, nor predetermined and essentialized but rather situated somewhere in the middle of a spectrum that ranges from sheer circumstance to active agency. We are both creations and creators of human existence and lived experience (Jackson 2013). Thus, the ideas, thoughts, and behavior we express towards disease is always rooted in this intersubjective process.

Social Networks and Social Support

It is especially in the domain of social network and social support that additions to the literature can be made. In general, the literature describes social networks as the social relationships that constitute the social network, and social support to the different

understandings of who gives and receives support (Jacobson 1987). Social network research has been mainly on the questions of community organization and systems through which support is mobilized and delivered, whereas research on social support has mostly been about what constitutes support and how it moderates health outcomes for those that receive it (Jacobson 1987). In both cases, criticism has been on the attempt to attribute objective characteristics to these constitutions. In other words, criticism on the literature on social networks and support have been to the lack of questions on what these terms inherently mean to those that make up the social network and deliver and receive the support (Jacobson 1987). Here, in contrast to recipients of social support, little has been written on the experience of those that deliver social support – the social network members.

However, the way that members of the social network interpret and understand support can differ per individual, setting and social situation. Furthermore, little emphasis is put on the continuously changing ideas and processes that the relationships between

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10 individuals and similarly the social networks are subject to. William Dressler

(1997;2007;2016), a medical anthropologist that has been writing a considerate amount of literature on social support and health outcomes, does emphasize the subjective, cultural context social networks and social support are subject to. He argues that both structure and meaning must be taken into consideration in order to account for an adequate description of the workings of social support and its outcomes for well-being of recipients. However, his research too, is focused on the perspective of the recipients, and does not consider those that deliver support.

Barry Wellman (1990), another scholar who specializes in social support in relation to community ties, investigates the ways in which different types of community ties, provide different types of support, which is mostly dependent on the characteristics of the relationship between constituents, such as parents-children, friends, co-workers and other types of

relationships. Although Wellman provides an elaborate study of the broad and specialized types of support by community ties, it does not elaborate on the workings of social support in times of sickness per se. Furthermore, his emphasis too is placed on those that receive rather than deliver social support. In fact, most of the literature on social networks and social support focus on how social support is established, the different types and density of personal

networks in relation to support, the various categories social support can constitute, or the outcomes of social support for its recipients (Martí et al 2016). One study that does investigate the benefits of social network members providing care to cancer patients, is a quantitative study conducted by Kim et al (2007;2012). However, they solely focus on close family members as opposed to the extended social network of patients and provide no clear definition of what constitutes caregiving in their perspective. Considering these studies, there is ample opportunity left to investigate the experience and understanding of social network members in providing social support to patients.

Therefore, the main attempt in this thesis is to analyze the experiences of the members of the social networks of patients in the stable phase of cancer, in order to understand how they negotiate the relationship between themselves and the patient. Subsequently, I will elaborate on how social support is manifested and experienced, and I will make an attempt to provide a new definition of social support. In order to do so, the first section will examine in what ways the disease and extended life phase is comprehended by the social network members. An argument will be made for the process of liminality in both disease and the ‘stable phase’, and their contingency in the continuation of negotiating and renegotiating the ideas about both aspects. The second section, then, will build on these contingencies and see

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11 how they negotiate and renegotiate the patients as someone who is seemingly healthy yet simultaneously ill. Thereafter, the third section will elaborate the various ways in which support is experienced and delivered by members of the social network. All in all, these chapters build on each other in an attempt to draw out how members of the social network continuously develop and construct new ideas and ways of coping with an ill-loved one and its ramifications.

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Methodology

The majority of this ethnographic research is based on in-depth, semi-structured interviews. Below, table 1 and 2 make clear the various patients and their family and friends, and other variables such as gender, where the interview took place, and so forth. All of the interviews lasted for approximately an hour, sometimes a little bit less and sometimes a little bit longer. Moreover, every one of the participants gave permission to record the interview, therefore all fourteen interviews are recorded. The interviews were semi-structured as I had a list of twenty questions that I would always bring to the interview, but depending on the participant and the course of the conversation I would leave out or add questions during the interview. However, some questions I would always ask participants, for example: “What does cancer mean to you?”1_{The questions in the interview guide are based on the typology of sickness, illness and}

disease as described in the introduction. Twelve of the interviews took place in the home of participants, and two interviews took place at the office where the participants worked. The interviews took place all over the Netherlands, but sometimes I had to travel back and forth to a certain town or city because multiple participants would live there. These participants often belonged to the same patient, meaning interlocutors from the same patients often lived in the same town. All of my participants were at least forty years or older - three of them male and eleven female. Not all of them had children, and only one of them had no partner. On two occasions, the partner of the participant would be present during the interview and also participate in the conversation. In some cases, the participants were already retired, or thinking of retirement, but most of the participants were still working. Also, all of the names in this thesis are pseudonyms in an attempt to safeguard their anonymity. Furthermore, all their personal data is coded in the transcripts, to further safeguard their anonymity.

Table 1. Schematic Outline Methodology

1_{See appendix for full interview guide}

Interviewe e Wome n Me n Childre n Childle ss Singl e Partn er Friend Famil y Worki ng Retired/non-working Total 11 3 11 3 1 13 7 7 8 6

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Patient Interviewee Relation Place/other

Sarah (1)Marion (F) Daughter in law Home

(2)Alice (F) Friend Home

(3)Alana (F) Friend Home

(5)Megan (F) Ex- daughter in law

– Friend

Home

(7) Hugo (M) Ex-Husband –

Friend

Home

Patient Interviewee Relation Other

Jolene (10) Yvette (F) Sister Home

(12) Elise (F) Friend

(acquaintance)

Home

(14) Yasmine (F) Step-daughter Partner present - Home

Hestia (4) Livia(F) Friend Home

(8) Cecil (F) Sister Home

Emma (6) Eva (F) Friend Home

(7) James (M) Partner Office

(13) Helena (F) Friend Office

Bob (11) Lennard (M) Friend Partner present -

Home

Table 2. Outline participants per Patient

On the one hand, the interviews gave me a lot of data that is relevant to the research, on the other hand, I would have liked to enjoyed some more opportunities to observations or

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14 participant observation. This was difficult because my participants were all scattered across the country and not bundled up in one place. Moreover, the interviews were formally agreed to via email, and therefore had a bit of a formal ring to them. This had its pros and cons: people knew that I was coming and would be open to talk about the subject. Sometimes when they were nervous I would try to lighten their nerves by making a small joke in order to create a more relaxed atmosphere in which they would feel comfortable. Moreover, there was no confusion about the goal of my visit, they all had consented via email, and they all knew they were being interviewed and that their answers would be used in a research project. In other words, they knew what was expected of them. However, a downside was that there was also a lack of spontaneity. There were no casual or unanticipated conversations on the topic as one might encounter in a field that is a place where people are constantly together, for instance.

Collaboration Antoni van Leeuwenhoek hospital

The fieldwork done for this research took place in the Netherlands and in conjunction with the Antoni van Leeuwenhoek hospital in Amsterdam. I have worked together with an independent researcher at the hospital named Hilde Buiting, who is currently not only examining medical ethics and the ‘stable phase’ of patients with incurable cancer, but also doing a part-time medicine study. We came into contact through the UvA due to her search for an anthropology student who could assist in the research on the ‘stable phase’ of patients. Eventually we concluded that I could contribute to the overarching research on patients by investigating the friends and family of patients that are in the stable phase of incurable cancer. The idea was that in order by understanding the experience of family and friends this

eventually might paint a more holistic picture of the lives of patients and perhaps this understanding could contribute to the well-being of patients and their family and friends.

In order for me to do the research, the Medical Ethical Commission of the hospital had to approve my research. Fortunately, there were no problems in this process. However, I had to stick to the proposal I had submitted and a change in my plans would mean it would have to be reapproved by the commission. Moreover, all the participants that took part in my research, I have accessed through Hilde. That is, Hilde would be in contact with the patients and ask them if I could interview their friends, family or both. Subsequently, patients would choose the people they think would participate, or felt comfortable with being interviewed, and sent their contact details to me. Thereafter, I would send them an email that contained all the information and goals of the research from my AVL-account. In some cases, I was also present during an interview with the patients. Hilde would conduct the interview and I had the

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15 possibility to listen to what they said, as well as being able to ask them a question or two at the end of the formal interview. However, I did not meet all of the patients that had sent me contact information for their friends and family.

In terms of the fieldwork location, I had little problems with communication since I am a native Dutch-speaker and so were my informants. Despite the lack of problems in the communication, I did experience some difficulty with regards to the “fieldwork at home”. That is, it would sometimes be difficult for me to separate my personal life and my fieldwork time because the boundaries would sometimes be blurred. Yet, because fieldwork was at home, I had no experience with culture shock or a difficult time acclimatizing in the field, which allowed me to really focus on my topic.

With regards to the research activities, I occasionally experienced difficulties. That is, the first month of the fieldwork I had done some observations in the hospital, but was lacking contact with my population. Initially, I had been present at interviews with patients, an MDO, attended two focus groups for GP’s, did general observations in the hospital and surfed the internet to see what kind of events were taking place for friends and relatives of patients. At some point, I had found out about ‘Gasthuis’, which is a foundation that accommodates friends and family of patients that undergo surgery or other time consuming treatments and do not live nearby. I reckoned this was the perfect place for me to do research and I immediately sought contact with them. So far, I had been dependent on my fellow researcher and her population, the patients, to find me contacts of family and friends. Therefore, the guesthouse provided an excellent opportunity to gain more control over my research and also a space in which I could observe and talk casually with the social network members. I offered the guesthouse to become a volunteer and explained my situation as a researcher. Initially, they were happy to receive me and thereupon a date was quickly set to start my first shift.

However, after my first shift, the management of the house decided it was not a good idea for me to do research there. The issue had to do with the notion of transparency – would I be transparent enough to the guests when I was researching, i.e. using their words for my project, and would it be clear to them and the guesthouse when I was acting as a volunteer? In order to safeguard the guest’s privacy, the management decided against my request of doing research at their foundation.

As described above, I did encounter a couple of setbacks and obstacles in the field. The first was that in the first month it was rather complicated for me to find my research population. When I did, in the Guesthouse, I was subsequently denied access. This was not only frustrating in terms of being close to something that seemed to perfectly fit into my

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16 research, it was also frustrating that I did not have the opportunity to work in a delineated space of which the boundaries were clear. That is, because the entire Netherlands became my fieldwork site, of which I would just have momentary instances to see people, it felt rather too broad to say something meaningful about it. Moreover, because the fieldwork was at home, it complicated it even more due to the everyday practices of, for example getting in the train, was something that I had already experienced thousands of times. Nevertheless, despite sometimes confusing periods due to the sizableness of the fieldwork site and instances of enculturation, the moments that I spend with the friends and family of patients, were informative and valuable.

In terms of collaborating with Hilde and the AVL, there were little difficulties there. Even though there were rules about having to follow what was in my proposal, this worked out great for me as I did not have any trouble in the end with having to change my research. The expectations of one another were clear. That is to say, there were no sudden additional assignments or other forms of activities that were expected of me. Moreover, because both myself and Hilde are academic researchers, there is more clarity as to what I am exactly doing and what is expected in terms of research practices. In addition, Hilde specifically asked for an anthropologist to contribute to her research because she reckoned the overall research would benefit from it. That is, whereas other might have experienced a lack of enthusiasm in terms of research from their organizations because of their vague understanding of what anthropology exactly is, I did not. Lastly, one realization that occurred during the course of the research is that I was viewed as a representative of the AVL. That is, whereas I would feel like a MA student embarking on my first research, it became clear that the AVL regarded me as one of their representatives. In the beginning it took me a while to get adjusted to this idea, but further on in the research I could get comfortable with both roles as student or AVL researcher.

Overall, I did have a positive experience with regards to this research. Personally, I thought it was amazing how people would open up about their lives and let me ask all these personal and sometimes sensitive questions. They have shown their vulnerability, sensitivity, their hardships, but also their inspirations and humor. Even if I would feel like I did not want to do the interview, because I was tired or for whatever reason, I would always leave the conversation with a good feeling, knowing that these people had given me their trust and where determined to help their friend or family by letting me interview them. After every interview, when I would ask them if I could contact them again for any reason, they would always happily accept. On a scholarly level, I think the stories and experiences that the social

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17 support structure shared with me can positively contribute to medical science, due to the importance of social interaction patients need in times of adversity. Even if the members of the social network might not entirely understand the experience of the patient, their support, in any kind of way, can significantly contribute to the well-being of the patient.

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Cancer as a Threat and Inspiration

I want to emphasize, again, the typology of disease, illness and sickness used in medical anthropology to differentiate between the physical malfunction of the body, the subjective experience of symptoms by patients, and society’s cultural and social values attributed to disease. However, important to keep in mind is that this distinction is only made within scientific context and often used interchangeably by laymen. Moreover, the Dutch language has no variety of words to distinguish between the three typologies. However, for the purpose of analysis such a distinction is useful in dissecting the various experiences of cancer by the members of the social network of patients. Hence, for the remainder of this chapter and thesis, I want to stress that I will use ‘disease’ to refer to the physical malfunction of the body in the form of cancer. ‘Illness’ when I want to emphasize that I am referring to the subjective

experience of symptoms of the disease by patients. And lastly, I am using sickness to illustrate the point of view and experience of members of the social network of patients. That is,

although the literature often refers to sickness in the context of society as a whole, here I will use sickness to refer to the attribution of the sick role to the patient by members of the social network.

Another important concept that is often used in relation to disease, illness and sickness is ‘liminality’. As the world around us is classified neatly into all sorts of categories in order to make sense of the ample stimuli that people have to process, liminality refers to those beings or objects that are in transition or somewhere in between these constructed categories (Turner 1964). In other words, liminal beings or objects are considered ambiguous and often threatening, precisely because they do not fit into the artificially constructed categories (Jackson 2005). In my view, the way that sickness embodies a liminal phenomenon, is through the way in which patients represent a threat to our perceived natural sense of progression, infinity, and invulnerability. What I refer to here, is the way that human beings often assume a kind of invulnerability that is defied and confronted by the mere presence of people who have encountered and portray human physical and mental vulnerability. In this chapter, I want to discuss the ways in which the liminality of sickness produces reflexivity on the part of the members of the social network and argue patients embody threat as well as inspiration or empowerment for their social network members. Second, I want to discuss the invisible yet very tangible notion of “the Sword of Damocles” that is inherent to the extended life phase of patients with incurable cancer. Consequently, for the first part of this chapter I will discuss the ways in which patients embody threat and inspiration for members of the

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19 social network as well as engender reflexivity. In the second part of the chapter, I will focus mainly on the aspect of ‘the extended life-phase’ – which denotes the ever present Sword of Damocles-feeling, that of a fearful apprehension for future events, which ultimately produces another range of expectations and emotions in the lives of the members of the social network.

Sickness and reflexivity

Pervasive and part of so many lives, the disease cancer inevitably resonates through the individual and social lives of the patients that endure it. Talking to the members of various social networks of patients, one thing became clear: it had, in one way or another, left its prints on their individual believes and lives as well. Especially interesting, was the ways in which they would describe what cancer means to them. That is, they did not refer to it as a physical malfunction of the body, but rather as something that produced feelings along the lines of suffering and anxiety. However, sometimes in one breath they would also mention how it had inspired them, or how it had made them reconsider their own life or their relationships in a more positive light. Take Alice for example. I had contacted Alice by sending her an email asking if she would like to participate with my research, to which she was initially hesitant, but after I send her some of the interview questions on her request, she accepted. Alice and I met at her house, that was situated in the quiet part of a small city, coincidently the same city I myself had grew up in. A slender woman with blond-grey hair opened the door, introduced herself as Alice and kindly invited me in asking if I would like some coffee or tea. We sat down in her living room at the dinner table and engaged in some small talk before we commenced the interview.

Alice explained that she and patient Sarah had become friends since they had gotten acquainted during their job at a center for family and children care. Now in her 60s and happily retired, Alice, takes care of her demented mother, and is an active and positive person that enjoys every day. She has two adult daughters, and a husband that still works – although she often gently reminds him of the benefits of early retirement. On my question what cancer means to her personally she replies: “Yeah suffering.. And it can either go right or go wrong. The idea of ‘this many percentage survival rate’, I think is nonsense. It’s either 50% you make it, or 50% you don’t”. This reply is very much in sync with her persona as she strikes me as a woman who deals with life in a very matter-of-fact way, not getting carried away or

overwhelmed by adversity but prefers to take issues and problems head on. Hence, her reply echoes this ‘matter of fact-ness’. Also, conveyed here is the idea of cancer as a sense of strain, but also of threat, where the latter carries the feel of an incapability of exercising control on

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20 the matter. Or perhaps, the emphasis for her is not on the situation itself, rather, it is on the manner of how to deal with it. Thus, regardless of what you do, or who you are, or what kind of cancer you suffer from – you will either survive the cancer, or the cancer will survive you, and in the meantime it is up to you how you see, deal and interact with it.

Alice continued with describing the ways she has physically and mentally seen Sarah suffer, and the impact hospital treatments had had on her friend’s life. However, the intensity of Sarah’s suffering, and the way that Sarah is coping with it, makes Alice proud and

respectful of her friend. In fact, she feels inspired by it:

Yeah it’s like I said, you get inspired by it. If you see her conditions and how she manages to still see light at the end of the tunnel, that’s just very impressive […] Look, cancer has influence on me in the way that it makes me aware of my blessings. Really, I can’t tell it enough […] Yeah, I just live more day by day now, rather than focusing on the future.

Here, the two quotes depict on the one hand the rather threatening aspect of cancer, and on the other hand it depicts the inspiration and positive attitude drawn from the adversity. Seeing what cancer can do to negatively affect another person’s life, makes Alice reflect her own life by telling me about her reconsideration of her good fortune of bodily health, being able to stay active all day, care for her family and thereafter finds time to run errands and meet up with friends without getting exhausted. Furthermore, adding to the reflexivity caused by the negative aspects, is the positive inspiration that Alice draws from her friend’s coping - Sarah embodies both suffering and inspiration for Alice. Thus, even though Alice’s first idea of cancer is suffering, her reflexivity permits her to focus and highlight the positive aspects of her life and actively implement this inspiration in her own life.

Another example of such reflexivity is Livia. Finding my way through maze of the suburbs of a large city, I eventually recognize the street sign that Livia had given me as her address. I had come into contact with her in the same way as I did with Alice, as I did with all my participants. I had send her an email asking if she would like to participate in my research and she happily accepted. She and patient Hestia have been friends since their daughters became best friends in kindergarten about ten to twelve years ago. Livia, in her early fifties, is married with two adolescent daughters, works as a communication consultant and

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21 simultaneously works at the GGD2 as a complaints and customer resolution officer. In the short time of only an hour or two, I had come to know her as a very kind and friendly woman, who loves her family and friends very much, always trying to understand and take care of their needs as much as she can. During our interview, I was especially touched by the

affection and warmth she expressed for her friend as she described their interaction, as she for example said: “You just really want to do something you know, and if it helped I would crawl to Paris on my knees, I just really want this cancer to be gone. But it won’t”. This remark conveys the intense affection and at the same time the intense frustrating feelings of powerlessness in relation to her friend’s situation, and I for one, cannot help but empathize with her plea. To witness such pain and suffering in someone you hold dear, while being unable to do anything about it must be one of the most despairing situations in one’s life. When I asked her about what cancer meant to her, she replied:

Yeah very unfortunate, and also lots of insecurity. Yeah.. cause I mean, I did see that it doesn’t necessarily have to mean the end. So that’s also a possibility. But what would be difficult for me is the insecurity. (…) I mean your trust.. your foundation disappears or something.

Expressed here is a similar sense of strain and threat as conveyed by Alice. Here, the threat relates to the increase on insecurity and vulnerability of one’s own life. That is, even though we are all unknowing of our exact time and place of death, the liminality of incurable cancer is accentuating the reality of death in the first place, and the idea of a shortened and

diminished quality of life in the second. Or in other words, it accentuates the insecurity and finite time of life in general. As I asked her to elaborate a bit further she explained:

Well, you have a certain confidence in life, for example: I’m going to grow old and die at one point. I mean you know that everybody dies at some point, but that it is still very far away. With her [Hestia] there hangs this… even though sometimes I forget, but I am occasionally reminded of it.

This insecurity of life, often tucked very far away somewhere in the back of our heads in daily life, is underlined through the interaction with Hestia. That is, Hestia is the embodiment of

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22 this insecurity and threat to existence and illuminates the fact that life, or rather the exact ending of life, is generally unpredictable. However, similar to Sarah, Hestia is also the embodiment of empowerment for Livia as she explains that experiencing this alongside her friend, has made her learn a lot about her own strengths in dealing with and accepting adversity, as she says:

And I have the feeling I have learned a lot the last couple of years also about.. you know even if cancer is something that I myself would encounter, I used to think like: oh I cannot handle that. Now, I think like: you know, I can do this, it will be alright. If it crosses my path, I will find the strength to move on and deal with it then.

Then there is Hugo. A gentle soul with a calm and organized demeanor, Hugo lives in a quiet town, with his cat and second wife, enjoying, for most of the time, his retirement. He tells me that he is curious to see what the interview is going to be like, as he did Sociology in

university, and took a course in Anthropology as well. At the time of my arrival, I had no idea what the relation between him and Sarah might entail. Turns out, they were married quite some decades ago, but managed to stay friendly after the divorce and occasionally look each other up to go to the Concert Hall in Amsterdam or for a cup of coffee. Even more so, when Sarah is in need of a ride to the AVL, Hugo occasionally steps in to drive her. For Hugo, his experience with cancer is reflected in the consequences of bodily pain and suffering of Sarah. He explains:

I mean, when I think about Sarah in this situation: it’s not that the cancer itself has any effect on me, but rather the consequences that it has had for her and still has. That affects me. […] It really controls a life, it really controls her life […] especially physically, […] and all the things she has had to go through in order to be able to enjoy the great and positive things in life, that is impressive.

Here, Sarah embodies for Hugo a loss of control of one’s own life as a consequence of

physical ailments as well as empowerment by being able to have endured all these treatments and adversity.

What can be seen from this, is that due to the social interaction and emotional engagement with their loved-ones who suffer a particular illness, members of the social networks like Alice, Livia and Hugo too are affected by the illness experience of their

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loved-23 one. Although there are subtle differences in their explanation and understanding of what cancer means to them due to their various personalities and backgrounds, there is generally a negative association rapidly followed by positive association, that is reflected by the patient’s attitude and behavior. These engagements, in turn, produces and influences member’s

reflexivity about their own lives and can construct or reconstruct different forms of

knowledge, meaning, and affect and feelings of the world around them (Burkitt 2012: 469). That is, they do not experience the illness directly, rather, the sickness is experienced through interaction with their loved-one. Having someone in your vicinity who suffers from incurable cancer, can produce positive reflexivity, instead of the disease being merely a negative liminal phenomenon representing a threat to health and invulnerability. Seeing what the disease does through the lens of their friends’ actions and attitude, creates incentive for the members of the social network to reflect their own life and act upon this reflexivity, whether it is choosing early retirement, in counting their blessings on a regular basis, in feeling empowered, or in increasing the amount of holidays or leisure activities.

How members of the social network experience the sickness with and through their loved-one, determines, in part, the outcome of their view on cancer on the one hand, while on the other hand the perspective on their own life and relationships. Witnessing the bodily and mental suffering that their loved-one has to endure associates cancer with anxiety, pain and suffering. That is, it embodies the threat of cancer - whether that threat is situated in the insecurity of one’s own finiteness, inability to control one’s life entirely, or in the fear of losing someone you love. At the same time, witnessing the attitude and actions of the patient in coping their disease, embodies hope, inspiration, gratitude and appreciation in their own life.

The Sword of Damocles

The section above investigates and examines the representation of cancer embodied in the actions and attitudes of patients and focuses on the reflexivity of members of the social network. In contrast, this section will focus on the temporal aspect of the incurable cancer of patients. The inherent temporal aspect of an ‘extended life phase’, highlights the otherwise somewhat subdued temporality that might accompany other illnesses or lives. In other words, the uncertain development of the disease places an urgency and uncertainty on the time that is still available to spend with one another. The degree to which this temporality and urgency is experienced influences the way in which the members of the social network negotiate and renegotiate their relationship to the patient. Picture this as follows: there is a spectrum that

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24 stretches from social network members experiencing low urgency to experiencing high

urgency in maintaining and putting effort in their relationship to the patient as a consequence of the stable phase of incurable cancer. Meaning, if for example, there has been no bad news or results from scans for some time, the patient is able to live his or her life in much the same way as the social network members, there is little urgency experienced for the members of the social network to invest in their relationship with the patient (i.e. not more than usual).

However, when bad results, decrease in health and lack of beneficial therapies all coincide, high urgency is experienced by the social network members due to the increased change of passing. However, regardless of the intensity of the urgency, the urgency remains due to the nature of the situation – this urgency is termed by some of the members of the social network themselves as: “Sword of Damocles”.

The Sword of Damocles anecdote is the moral story described by the Roman Cicero and tells the story of the tyrant Dionysius and his subject Damocles. Damocles expressed his thoughts on the blessing of the great fortune and power that Dionysius enjoyed as king, to which Dionysius proposed to switch places with him for one day. According to the legend, there was, however, one condition of this trade: a huge (sharp) sword was to hang above the throne for the day that Damocles was king that was attached only by a horses hair. The moral that Dionysius wanted to convey is that kings and men of power have to live in constant fear. Although initially the phrase was used to denote the constant fear that accompanies great power, it can also express a sense of fearful apprehension that something bad may happen, regardless of one’s position of power3_.

Members of the social network have occasionally used the phrase ‘Sword of

Damocles’ to describe their fearful apprehension in the course of their loved-one’s disease. That is, the fact that the cancer is stabilized or inactive at the moment, does not guarantee its stability or inactivity. This of course, also relates to the discussion in the previous section that describes patients as the embodiment of negative and positive liminality which incentivize reflexivity on the part of the social network. The connection I am emphasizing here is the liminality, or abnormality, of the extended life phase of patients. This ambiguous phase of suspense consequently poses a disturbance on the naturally perceived linear order of things. I use the word linear, because I want to emphasize that during this phase, in reality, patients experience ups and downs with regards to their health.

3_{https://en.wikipedia.org/wiki/Damocles}

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25 In particular, the inherent suspense and apprehension of this phase, is translated as a tension or pressure, perhaps a strain, that is subsequently manifested as impacting the relation between the members of the social network and the patient. In addition, this pressure is

constantly present yet differs in tangibility and intensity. That is, depending on the situation of the patient and depending on the situation of the members of the social network, the sensation of apprehension or pressure on the relationship can either increase or decrease. For example, those members of the social network that expressed in the interviews that open

communication between them and the patient, prior experience with cancer or a career in health care usually aided them in relativizing the situation, allowed a less severe experience of threat or pressure on the relationship. Whereas for participants expressing that this was their first experience of the patient’s cancer illness in close proximity, or where communication from the patient’s side decreased, they would experience a more intensified feeling of pressure on the relationship and sense of future doom.

This sense of ‘Sword of Damocles’, or feeling of apprehension for the members of the social network, is, amongst others, illustrated by Yvette. Yvette is in her 60s, a divorcee, and living in her apartment in a small, picturesque town in the eastern part of the Netherlands above a shopping mall situated on the town square. She and Jolene have met through a mutual group of friends that occasionally meet up, go away for the weekend once a year, celebrate Carnival and Christmas together and organize all sorts of other activities. Yvette strikes me as a very kind and honest woman. She is open and frank about her feelings on her personal situation as well as her friend’s situation - not in a harsh way - but rather in a certain kind of innocence that is not to be mistaken for naivety. During our interview she expresses:

[…] then I am sitting here with the thought that maybe soon she has to say goodbye to us, how are we going to do that? And that is constantly in your head. Because I mean, now everything is fine, but this can be different next year. So, how are we going to do that?

And a bit further on she says on the disease itself:

The fact that someone in your vicinity is very ill, makes you more focused in your own life. Although, very ill.. in the sense that she is not badly ill, but you know that there is something that slumbers inside her body. It’s okay now, but you never know,

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26 so you need to take that into consideration, that you will receive bad news at one point. […] and it is not that I am thinking about it every day but it keeps me busy.

Yvette describes here the sense of fearful apprehension of what may happen in the future. Although everything is fine now - the cancer is inactive and allows Jolene to live her life much in the same way as healthy people do – Yvette knows that there is something that ‘slumbers inside her body’, a looming threat.

Likewise, Alana, a member of Sarah’s social network describes the Sword of

Damocles analogy. Alana and Sarah had met during a course for creative writing. After some strife within the writing group, they decided to go for coffee one day to talk things over, resulting in an almost twenty yearlong (and counting) friendship. Alana’s mother also suffered from cancer, which lasted for a period of nine years before she eventually passed away. She explained that even though her mother was ill, she still had quite a long period in which she enjoyed quality of life before her passing, much like Sarah. She tells me a bit more about the different situations of Sarah and her mother when she says:

And if you have had it, then you will feel this anxiety in the back of your head with the thought that it might come back. And that was the case with Sarah, I mean it was gone for five years.. and yeah you don’t think about it all the time but you also remind yourself that it can come back. And it did. […] and cancer, yeah, there is always the threat of metastasis.. and even then, you can still live with it for a while, but at one point that stops.

Again, stressed is the ever-present knowledge of something that slumbers in the body and can become active at any giving moment – much like a time bomb. This idea of a ‘time bomb’ denotes the previously mentioned idea of temporal urgency. The realization of the fact that there is a possibility of remission, metastasis, or reactivating cancer cells demonstrates the temporal urgency that accompanies a disease such as incurable cancer. However, the nature of their friendship and living situation allows Alana a low sense of urgency or pressure in their relationship.

However, a somewhat different experience of the sword of Damocles is portrait by Megan. In contrast to Alana and Yvette, Megan and Sarah do not see each other that often as they live about three hours apart and have contact only once in a while and varying in

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27 a relationship years ago, and while their relationship did not last, the friendship between Sarah and her did. They still meet up on a regular basis, however, since Sarah’s illness this

relationship has known less carefree times. For Megan it is difficult to visit Sarah more often due to the long distance between them, also taking away some of the spontaneity in their relationship. However, the fact that Sarah is ill, begs for an urgency to see one another, creating also extra pressure on their relationship. Megan explains:

So you’ve noticed: I am not living close to Sarah, so when I go there to visit her, it’s not for an hour to drink a cup of coffee, and that is what makes it difficult. And if I would live closer I would visit more frequently and then there would be a bit more air between us as well […] but then there is this constant idea of the Sword of Damocles.. thinking oh I hope it is not too late.. but yeah that already going on for four years, that’s the crazy part.[…] and the difficult part with her is that ‘the end’ keeps shifting […] there is no timeline or something you know. And it is also difficult to assess her situation from here.

In Megan’s case, the situation is a somewhat different to that of Alana’s, due to the fact that the distance between them in conjunction with Sarah’s illness produces pressure on their relation and removes a degree of spontaneity that used to ease their relationship. The temporal urgency and subsequent pressure on the relationship, is acutely present in the situation of a large distance, that can also be translated to a low frequency of visits. To illustrate my point, I cite Hugo when he states some of the difficulties he has encountered in his relationship with Sarah:

You know that is one of the problems that I encounter. The difficult part is to

reconnect after a long time of no contact, not to maintain contact. To establish contact after a period of absence is what I find difficult. I don’t know what I am going to find when I see her again, how she is holding up, what has happened and that creates a threshold for me to spontaneously visit her. And when you are regularly in contact, and especially when you keep seeing her than you maintain this feeling or idea of her. And that is easier to me than seeing her after three months and we have only sent each other some emails.

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28 Both Megan and Hugo struggle with distance. The momentary encounter with Sarah for both of them acutely presents the temporality inherent to her situation, whether it is feeling

pressure and guilt in the relationship for Megan, or apprehension of outward and physical appearance for Hugo. In contrast, the frequency of the meetings and encounters and small distance in living situations in the case of Yvette and Alana, relieves some of that acute urgency and temporality in the course of the stable phase.

Most of the interlocutors would express such a looming threat, or actually use the phrase ‘Sword of Damocles’, at one point or another. However, interesting is that they would also often express that they did not think of this constantly or daily, but somewhere in the back of their head, it would always be a possibility that this threat would become very real, and their apprehension would be justified. Yet, to counter that apprehension, they would also mention that there is the real possibility of someone, or themselves, getting hit by a tram and suddenly die. This expressed thought illuminates clearly the reflexivity of the interlocutors on their own life and uncertainty inherent to it. However, this element of uncertainty in human life is accentuated through the illness of the patient, making it increasingly visible through moments such as an organized visit for a cup of coffee, a ride to the hospital, a change in outward appearance, or when a patient can no longer do certain activities due to quick exhaustion.

Conclusion

In short, the liminal aspects of disease and the extended life phase have resulted in reflexivity that produces a negotiation and renegotiation of their relationship to the patient as well as the world around them. I use the terms negotiation and renegotiation here to refer to the ever in-flux and fluent state of this reflexivity. Furthermore, the liminal state of disease are embodied in patients as both positive and negative attitudes toward the disease. That is, whereas cancer can inspire insecurity and threat to one’s life on the one hand, it can also inspire inspiration and empowerment on the other. In particular, the actions and attitudes on the part of the patients for the most part determine the negative or positive embodied notions for members of the social network. Furthermore, the temporality producing a sense of urgency indicated by the phrase ‘Sword of Damocles’, evokes feelings of ambiguity and uncertainty which

influences the emotions, behavior and perspective of the members of the social network. The degree to which members of the social network experience pressure and urgency can

determine the nature of the friendship, yet, the nature of the friendship similarly determines the sense of urgency perceived. In cases of long distance and infrequent visits as explained by

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29 Hugo and Megan, an increased sense of pressure is experienced which is subsequently

translated in the way that the friendship thereupon is experienced. In other cases, such as Alana’s and Yvette’s, a low level of urgency is experienced due to the frequency of contact and subsequently conceals, as it were, the aspect of sickness in the friendship.

In sum, I want to underline the workings of reflexivity and the temporality of sickness. Picture again the spectrum: on the one hand, there is the negative outcomes of reflexivity as a consequence of liminality such as threatening, suffering and pain. On the other hand, there are the positive outcomes such as empowerment and inspiration. Likewise, the spectrum in terms of temporality of this particular situated disease, is on the one hand experienced as low urgency and produces a friendship that is not much different, albeit a bit, than a friendship without sickness. On the other hand, is experienced a sense of high urgency that implements pressure or strain on the friendship, creating more difficulty in establishing a mutually beneficial relationship. Both spectrums are mutually influencing on each other – feeling an enormous amount of pressure on one’s relationship can be neutralized or diminished by an enormous inspiration drawn from the ways of coping by the patient. Similarly, when a member of the social network initially feels overwhelmed by the disease, low urgency and open communication from the part of the patient allows for a renegotiation of the friendship. Suffice it to say that social network members are generally situated somewhere in the middle of both spectrums, where their views and experiences are always contingent and

ever-changing.

In the next two chapters, I will elaborate further and in more detail on the workings of friendship in times of illness. Particularly important is to keep in mind the workings of these spectrums, because they illuminate the elements of contingency and fluctuation of the relationships between patient and members of their social network.

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30

A “Healthy” Patient

The social network of patients consists of all sorts of different type of relationships. Old friends, new friends, acquaintances, sisters, soul-sisters, partners, ex-partners, daughters and daughters-in-law who all construct and produce meaning to each other’s life world. Likewise, they all contribute to and produce meaning to sickness and the way illness is experienced by both patient and members of the social network. This process is partly influenced by the two spectrums explained in the previous chapter. That is, a person’s reflexivity and perceived temporality of the sickness, contribute to their understanding and construction of the patient and their relationship to them. Slowly but surely I found that the friendships and family relations experienced by members of the social network were worth emphasizing – it would be a humanizing effort for patients and their social network. That is, talking to the members of the social network, I got to know them as well as the patient, their family and way of life. Prior to commencing my fieldwork, I did not anticipate that ‘friendship’ itself would be one of the major themes in this thesis. However, I got fascinated by the variety of modes and possibilities of friendship that exist. Evidently, one only has to think about their own social network to see the various friendships that can exist. With some friends you share your love of music, with another you travel effortlessly around the world, while with some you discuss the daily politics that the others would detest.

However, there is, as of yet, little research done on the workings of friendship in relation to sickness. There has been done some quantitative research on caregiving provided by close family and friends as well as attempts to define and situate informal caregiving. Examples of these studies are, for instance, the research on time costs of informal caregiving by Yabroff and Kim (2009), and the quality of life of family caregivers five years after diagnosis by Kim et al (2012). Furthermore, other quantitative studies have been conducted on the benefits of the caregiving experience for families and close friends of cancer patients by Kim et al (2007), and the helpfulness and impact of social support and social networks for cancer patients by Kroenke et al (2006) and Arora et al (2007). However, although these studies do provide a clearer sense on the scope of informal care by family and friends and the various forms of care they provide, there is a lack of qualitative studies on the multiple forms and perspectives of social support and social networks. In fact, none of these studies focuses specifically on close friends or friendship or explicitly explain the workings of friendship in times of sickness or how friendship constructs caregiving. Therefore, in this chapter, I want to

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31 outline some of the various relationships between patient and members of the social network, and what these relationships entail. In particular, I want to stress what meanings are attributed to friendship by members of the social network in times of sickness.

Friendship

Robert Paine (1969) attempts to provide us with an explanatory analysis of friendship,

situated in our Western middle-class culture. Paine’s article provides a good starting point for the further discussion on friendship in times of illness in this thesis, as it provides an analysis of the various Western middle class characteristics attributed to the relationship, and is exactly the situation in which the relationship between the patient and their social network is situated. Characterized as the interpersonal, affective relationship between people, friendship is often difficult to perceive and understand from outside of the relationship. One of the main attributes of friendship, according to Paine, is that it consists of a personal and private

relationship. The private and personal pertain the autonomous, unpredictable and confidential elements ascribed to it. In other words, friendship in the context of a Western middle-class, is a matter of personal and voluntary choice, unrestricted by social control and

institutionalization. Furthermore, as is the case with all interpersonal relationships, they include exchanges, of which the nature of the exchanges is dependent on the type of relationship. In other words, reciprocity is inherent in every type of relationship, although typical of friendship is the equivalence in the reciprocity and respect between two individuals. However, this reciprocity, and the extent of equal reciprocity, might not always be recognized or visible to outsiders of the relationship.

There are other types of ‘friendly’ relationships worth to mention, although not in great depth as it is beyond the scope of this thesis, due to the various relations between patient and members of the social network in this research. Some of the other categories that brush against the boundaries of friendship include: acquaintanceship, partnership, group fellowship, and relations amongst kin or between spouses (Paine 1969). Some of these categories overlap with the category of friendship - spouses and kin can simultaneously be friends,

acquaintanceship can in some cases be a prelude to friendship, and group fellowship can result in personal and private relationships between two individuals as well. Furthermore, in the case of kin, although there might be a relationship that aligns with friendship, one would probably first refer to, for example, a sibling as brother or sister, rather than friend, regardless of whether they too maintain a friendship relation. However, the purpose of this section is not

Sickness and the social network : friends and family experiences in supporting patients in the stable phase of incurable cancer