Beyond Cancer Treatment - Clearing and Healing the Underlying Causes: A Personal Memoir and Guide

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What needs to be done to get well again? It required certain redressive actions to be solved. The afflicted individuals or groups have to approach the disturbed situation with certain kinds of actions aiming to resolve the crisis. These mechanisms vary in type and complexity with such factors as the depth and shared social significance of the breach, the social inclusiveness of the crisis, the nature of the social group within which the breach took place, and the degree of its autonomy with reference to wider or external systems of social relations.

Turner gave the latter special attention.

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In the context of long-term illness, redressive actions intend to restore the health and quality of life in a suffering human being, to bring persons from an ill state to a healthy state. In our material, we met persons who composed their pathways with a wide range of health-seeking strategies.

Some compositions were more complex than others. In Norway, this represents the institutionalized, formal redressive machinery that is activated when citizens need health care. The medical doctors and the biomedical system are an authority in Norwegian culture with regard to cancer treatment. However, a life with cancer is not only about removing a tumour. In our material the participants coped with challenges such as fatigue, pain, insomnia as well as stoma. Furthermore, they had to deal with identity problems, changed social roles, fear of dying and losing loved ones. Thus, later in their journeys, the participants began composing their individual pathways by using health-seeking strategies outside of the conventional health care system.

The participants used a combination of approaches to meet manifold needs. Some were complex compositions with traditional healing, complementary medicines, talks with priests, prayers, walking, being in nature, humour, physical training, diet change, and own care. Others were less complex and only made use of self-care. We interpret these practices to be health-seeking actions that are ritualized and rooted in Norwegian culture.

Rituals, in general, may have many different effects on people. Redressive rituals are structurally similar to rites of passage as they intend to bring persons or groups from one state to another. They include rituals of affliction, which are used to approach individual health problems Turner, These are therapeutic in nature, and include healing rites performed by ritual specialists to restore health and social stability. She had conversations with a Christian priest and a psychiatrist.

They had different approaches, but she experienced that they complemented each other. Eva had massages, changed diet and undertook a wide range of physical activities. For sleeping, she used conventional medicine or read a book. Humour, positive thinking, being social, spending time at the cabin and picking berries were important for her well-being. David, Jacob, Ken, and Per had simpler health-seeking profiles, but they also undertook actions outside of the public health care system to improve their health. For example, Per attended different courses to learn to live with a stoma.

He also went to Spain to get physical treatment and training. Our findings suggest that the redressive actions come in many forms and for various aims. The dynamic characteristic of illness and life, in general, may require a person to be flexible and adjust their behaviour according to their needs. It also seems like actions associated with health, such as having walks in a Norwegian cultural context, become even more meaningful in a pathway with cancer where the actions are utilized for the better quality of life in a time of cancer. This last phase of the model should thus be understood in broader terms than just a problem being fixed, as not all crises can be successfully resolved.

Rather, the outcome of a social drama is reaching a new normality. This can mean either reintegration with a restoration of stability, or the recognition of an irreparable schism. Overall, normalization and getting back to everyday life were emphasized as important goals by all the participants.

According to Hargraves, Behfar, Foxen, Montori, and Terzic it should also be a goal for health care:. Reaching a healthy state and regaining normal bodily functions were some of the motivations behind undertaking the redressive actions. Mattingly, , pp. For patient pathways, equilibrium can be considered on both the individual and social level, where normalization means achieving a new state.

It can thus be seen that the last phase in our model is characterized by some ambiguity as the concept of states is equivocal. The goal of taking redressive actions is to regain one's health. Dying or being diagnosed as terminal could be considered irreparable schisms. A pattern in the material shows that participants reconciled with their lives as they were, and did not think about how life could have, or should have, been. Mattingly compares the aim of occupational therapy to Danforth and his description of religious healing, which for instance is ….

Healing in this sense is comparable to a conversion experience. Danforth sited in Mattingly, , p. In a similar manner, Turner and Avison , p. Rather, resolution of an issue for Erikson …. Our findings correspond with this understanding, and we argue that this is a central feature of the last phase of the social drama model, seen in the context of a long-lasting and complex illness pathway. We may say that this understanding of resolution constitutes the transition into the last phase.

I got a new understanding of that which really matters in life, what one should care for and to carefully select which wars to fight. Therefore, I would say that I am standing on a different platform or level than before. Something different than I had before, and that is in a positive sense. It has been experiences that have been very valuable, and that have led to a perspective on life that is very good. I enjoy life even more now than before.

In the end, he considered himself to be lucky because he had a better worldview than before the diagnosis. Summing up his pathway, Jacob first talked about the dramatic experience of diagnosis. After a period of worries, he reconciled himself with the situation. To our understanding, this demonstrates a successful outcome of a pathway with cancer.

Other participants also reconciled with life as it had become. Some even emphasized that they had gained a new and better perspective toward life after the pathway with cancer. This is in line with the findings of the extensive literature on post-traumatic growth and personal growth in the context of cancer e. However, patients may also struggle with anxiety and depression after a pathway with cancer. Many participants had a drive to become integrated back into their previous social structures and statuses. Some examples include participants who had goals of going back to work, being able to once again live in their role as a mother, or just getting back to everyday life.

Several of the participants said that they realized that family and friends were the most important things in life. This led one of the participants to even move to another city in order to gain closer contact with the family. Being able to achieve these goals can be seen as the patient entering a clear state of reintegration.

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Mari, for instance, felt that she lost the role as a caring mother during illness. It was important for her to get back to this role:. I have been so afraid … I just had to use all my energy to cope with the cytotoxic treatment … To one day get back to the point where I could be mom again. And kind of normalize to a state where we all were a family again. We went travelling and I took charge at the check in.

Then one of my girls said: Mom, now I suddenly realize that you are on your way back again. Our material shows that normalization of life after cancer can mean different things to different people and depend on the individual context. For five of the nine participants, this included new perspectives on life. We further argue that the new normality is an outcome of the cultural and ritualized activities undertaken in the redressive process.

In a similar way, Mattingly suggests that …. This passage occurs along many different dimensions all at once. A healing process involves not only the body but social and cultural shifts as well. We believe that normality is not a static state. What individuals experience as normal will always be in flux in an impermanent conditioned life. However, not all participants found themselves back to a normal life, even after the medical doctors have reported them fit. Many find themselves in a state of being neither ill nor well Solem, These concepts must be explained in greater detail and understood in relation to liminality in general.

We have therefore chosen to elaborate on this in the following discussions. Elias said that it was like sitting on the outside and looking into a mirror. Very strange. So this is the night and this is light [pointing at a visual image] so this is a sun and here is the moon with the stars. We interpret these statements as experiences of liminality. Turner actually describes liminality as being in a tunnel. It is an experience of chaos, ambiguity and being outside of the world.

In other words, being in liminality means there is an inherent possibility of change and even transformation. Liminality can be a creative state where new ideas are born and a springboard to a new, better state. But, it may also be destructive depending on the condition and how the individual and the surrounding redressive machinery cope with the problems. Several social scientists use the term in the context of health and illness research.

She shows how persons with disabled and stigmatized bodies are separated from everyday life. Here they are divested of their usual surroundings, roles, and occupations. A similar notion is made by Little et al. Since the body contains both the cancer and the self, there is an embodiment of the illness, they argue. Malignant cells could have been left behind. Overnight her identity became reinvented and her story became one of uncertainty and unpredictable future, she writes.

Several of our participants reported during the interviews some early in the process that there was not much more to say, that they had started working and that everything was back to normal. At the same time, the same persons expressed that the shock of cancer had made an impact on their life. We suggest that a solution would be to distinguish between two different aspects of liminality: 1 social status and roles and 2 psychological and existential experiences of cancer.

In this way, we can understand liminality with two thoughts in our head simultaneously. A person may integrate back to previous social statuses and roles such as occupation and the role of a strong and caring mother, but at the same time never arrive in the village of the healthy where a healthy state is taken for granted. Back to structure on one level, continuous anti-structure on another. With continuous liminality and sustained liminality in mind, we are nevertheless left with the question where a pathway with cancer ends? But also, following Stacey and her cancer experience: when does it all start?

As liminality is about separation from the ordinary world, it may also be experiences of connectedness, joy and relational unity. A phenomenon often associated with liminal phases and rites of passages is communitas. For Turner, the liminal is more than a way station between beginning and end; it is a space in which people tend to be humble.

It is also a space in which people do what they are told to do—usually without complaint. According to Turner, people in liminal spaces often accept routines of pain. Moreover, people go through this experience together with others, which means that liminality creates a profound, if fleeting, camaraderie, a feeling that erases past distinctions among age, social class, and ethnicity. The separation from social structure through a breach of the norm in a social drama may lead to a social anti-structure where people are liberated from previous social statuses and not limited to playing certain roles in their interactions.

Edith Turner has worked extensively with the concept. Eva expressed feelings of special bonds to the other patients in the infusion room. One party wig and one for everyday life. When the food was finished, all the patients could jump into a minibus and eat dinner together. Dark humor, the greatest tool of communitas in frightening conditions, came into its own in the infusion room. Turner, , p. Humour was prominent in our material. The communitas concept contributes to an understanding of the lived experience of a patient at a cancer clinic and the importance of relationships with other patients.

According to Todres, Galvin, and Holloway , life is a journey embedded with meaning.

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They argue a patient may lose their personal journey if the biographical aspect is overseen in health care practices. In other words, both who and how a person is, are important. Todres et al. The postmodern experience of illness is more than a disease. It is a reflection of self and a personal narrative that demands to be understood Frank, There is a reciprocal and cyclical relationship between research, theory and practice, and research findings and theories are important for nursing practice Saleh, Our use of the social drama model suggests various phases of a pathway with cancer, each with particular features.

Therefore, it could provide social health care with the knowledge that may be used for care planning and person-centred care. The model also introduces concepts such as liminality, continuous liminality and communitas in a cancer pathway context, which are essential in understanding and communicating lived experiences of the patients. We argue that the model also could be valuable in education. A constructive way of working with the findings could be to invite patients, peers and health care workers to a dialogue aiming to construct learning modules for educational purposes and to discuss the practical application of such a model in real life.

Since this is, to the best of our knowledge, the first time model of social drama has been applied to long-lasting pathways, an interesting approach for future studies is to apply the model at other sociocultural contexts. Moreover, Norway is a country with relatively high rates of immigration. How are their needs, values and preferences compared to the Norwegians? Which challenges do they experience and in how can health care workers and policy makers improve care for this group.

Such a research facilitates for discussions of cultural competency vs cultural humility, which we believe are central for best possible care in a globalized world. In contrast to the cancer context in Botswana Livingston, , the access to appropriate conventional cancer care is well developed in Norway and may give the patients hope for healing Delvecchio Good et al. The study of cancer pathways in Norway also shows a different picture than the inequality that is revealed in many contexts of cancer McMullin, The National Cancer Strategy —, as shown in the introduction, for instance stated that Norway aims to be more user-oriented in cancer care, to be a leading example of good patient care and to provide the best possible quality of life for cancer patients and relatives.

Illness is not a static matter. In the difference to the understanding of a pathway as equivalent to standardized care pathways, the model may potentially grasp all aspects of lived experience with cancer which are understood as important for the patients themselves. By focusing on what is important for the patients, this model relates to person-centred care and may, therefore, contribute to health authorities aim of creating better patient pathways, but are also in line with the national cancer strategy mentioned above.

We have also seen that several of the participants got a new perspective on life in the later stages of our study. The use of the social drama model not only contributes to the development of theory in medical anthropology, but also contributes ethnographic data to the anthropology of cancer. Communitas is a phenomenon that often appears when patients meet at the hospital, for instance when receiving chemotherapy.

An extraordinary experience of unity that may strengthen patients morally, mentally and spiritually. The concept of liminality grasps the ambivalent experience of lived life with cancer, but equally interesting is Stoller and Little et al. This knowledge should be regarded as important for all working with cancer patients and who may be concerned with human suffering and quality of life in the context of long-lasting conditions. In particular, Hansen focuses on what matters for persons diagnosed with colorectal cancer and their lived experiences in context of illness.

Gro K. She has a PhD in epidemiology. She was research director of the Centre of Clinical documentation and Evaluation, from — Her research includes multi-diciplinary studies of user involvment, cultural sensitive and person centered care, doctor-patient communication, risk understandings and health and arts. The authors are grateful to all the participated who shared their experiences and thoughts in this study. The publication charges for this article have been funded by a grant from the publication fund of UiT The Artic University of Norway.

No potential conflict of interest was reported by the authors. Europe PMC requires Javascript to function effectively. Recent Activity. This study thus explores Victor Turner's model of social drama in a cancer care context.

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METHOD:Turner suggests that crisis is a dynamic process structured by four phases: 1 breach of norm 2 crisis 3 redressive actions 4 reintegration or schism. The results show that Turner's model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. The snippet could not be located in the article text. This may be because the snippet appears in a figure legend, contains special characters or spans different sections of the article. Published online Jul PMID: Frank Hansen , a Gro K. Rosvold Berntsen , b, c and Anita Salamonsen d.

Rosvold Berntsen. Accepted Jun The Norwegian context Inglehart argues that modernization processes are often associated with human development, individualization and secularization of a society. Material and method The research group was made up of a medical doctor, a medical sociologist, and two medical anthropologists. Data analysis methods All interviews were read attentively with an inductive approach Bernard, The experience of getting a cancer diagnosis in his own words: I was alone on a bus when I received the message about that.

Reconciliation A pattern in the material shows that participants reconciled with their lives as they were, and did not think about how life could have, or should have, been. Rather, resolution of an issue for Erikson … … refers to a temporary or enduring positive decision or settling in relation to the personal meanings of the event … when resolved, the individual may emerge from these engagements with a new skill, confidence, or other enabling self attitude that is added to his or her repertoire of responses or coping mechanisms.

Social integration Many participants had a drive to become integrated back into their previous social structures and statuses. It was important for her to get back to this role: I have been so afraid … I just had to use all my energy to cope with the cytotoxic treatment … To one day get back to the point where I could be mom again.

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In a similar way, Mattingly suggests that … … therapeutic plots are secular rituals that help patients make the transition from illness reality to new reality and, even, a new self. Communitas—collective effervescence As liminality is about separation from the ordinary world, it may also be experiences of connectedness, joy and relational unity. Future research Since this is, to the best of our knowledge, the first time model of social drama has been applied to long-lasting pathways, an interesting approach for future studies is to apply the model at other sociocultural contexts.

Conclusion In contrast to the cancer context in Botswana Livingston, , the access to appropriate conventional cancer care is well developed in Norway and may give the patients hope for healing Delvecchio Good et al. Acknowledgments The authors are grateful to all the participated who shared their experiences and thoughts in this study. Disclosure statement No potential conflict of interest was reported by the authors.

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