Sensing illness in everyday life: Care-seeking and perception of symptoms among chronic cancer patients

The aim of the project SENCANCER was to explore how people having had cancer, sense and experience bodily sensations and symptoms. We wished to investigate how everyday life takes form, what experiences lead to healthcare-seeking, who was used as a helper from the social networks (therapeutic pathways), and how the transitions from being fine to being worried and/or sick were experienced. Two PhD students were employed to perform parallel studies with a focus on respectively urban and rural sites. Both studies based their methods on anthropological fieldwork. The two PhD students did fieldwork in two different sites from January 2015 to January 2015. One in a larger North Norwegian municipality and one in minor rural North Norwegian municipality. The findings from the fieldwork in the larger municipality were as follows: Paper 1: Ignoring symptoms. The process of learning how to interpret bodily sensations again after cancer. Anthropology in Action, vol 24 (1), 2017. By using the concepts of sensation schemas and sensation scripts from recent theory on sensations, we saw that scripts, or actions taken to reduce unpleasant sensations gradually turned from seeking medical advice and check-ups to ignoring and waiting for it to go away. Later, adapting daily life to the new health situation became prominent, such as balancing rest and activity to avoid becoming exhausted. Paper 2: Sharing or not sharing. Balancing uncertainties after cancer in urban Norway. Health, Risk and Society, 2016. In this article we explored the uncertainties of living after cancer treatment. We refer to this process of managing uncertainty and the social processes involved as an act of balancing and we found that the participants were keeping most of their uncertainties to themselves. Their main argument was that they did not want to make others worry unnecessarily. At the same time, participants talked about the need and expectation to inform and involve relevant others and they also described needing an outlet through which they could share worries. These needs and concerns were balanced against a wish to maintain normal everyday life as far as possible. This weighing up of what to share and what not to share was an important strategy in managing life within existential uncertainty, without letting the uncertainty dominate social situations. Paper 3: Gaining sudden insight during in-depth interviews: The sensorial and emotional as pathways to understanding experiences of cancer. Ready for submission This article explored the process of gaining insight into an illness situation through interviews that focus on the sensorial. The researcher experienced gaining sudden insight into the deeply troubling aspects of the cancer situation through a process of empathic understanding of the participants situation. Sensorial imagination evoked emotions, and emotions as a method became a portal into understanding the existential uncertainty that this participant, among others, had expressed. The findings from the fieldwork in the minor municipality were as follows: Paper 1: Approaching Health in Landscapes. An Ethnographic Study with Chronic Cancer Patients from a Coastal Village in Northern Norway. Anthropology in Action, vol 24(1), 2017. We explored how North Norwegian chronic cancer patients used their familiar surroundings in an effort to counter bad mood, anxiety and symptoms of relapse and to strengthen their health. By drawing on Tim Ingolds understanding of taskscape, it is suggested that the participants after cancer treatment dwell in and engage with the surroundings of the village, including the core task of staying healthy. The participants embody the landscape through the temporality of taskscape, with the aim of dealing with pain, worries and bodily sensations in everyday life. Paper 2: The cancer may come back: Experiencing and managing worries of relapse in a North Norwegian village after treatment (under review, Anthropology & Medicine) In this article, we are contemplating human emotions as something that arises in contexts of transactions, capable of creating social realities. While informants attempted to protect family members by avoiding sharing worries with them, they expressed the need to share their worries within friendships but the socially dense relations were challenging and restrictive. Paper 3: The significance of social acceptance for symptoms: Sensing possible relapse of cancer in rural Northern Norway. Ready for submission. The personal evaluation of bodily sensations was embedded in cultural values in the village such as to contribute to the common good, not be a burden, be positive and avoid focusing on difficult things. This led to not sharing concerns about bodily sensations and showed the importance of social legitimization of sensations i relation to cancer and fear of relapse.

In Norway 27 520 persons were diagnosed with cancer in 2009 (14 792 males and 12 728 females). Cancer occurs in all age groups, but between 85- 90 % are more than 50 years old. Further, cancer survival is increasing in most cancer diagnosis, which means t hat more patients live with cancer as a chronic illness. Care or treatment is sought both at home, in primary health care and in specialist services in a continuous care-seeking process. We wish to shift the focus of enquiry from the common retrospective pre-diagnostic symptom research to an examination of social processes of care-seeking with special attention to chronic cancer patients' experience, interpretation and management of bodily sensations of ill health. We will approach this focus methodologic ally by using an ethnographic fieldwork approach. The aim is to follow the patients' everyday experience of bodily sensations and explore how they turn those into illness experiences and into medical symptoms and/or a diagnosis. Further, the project trace s how their care-seeking processes, based on bodily experiences, involve and engage social relations, social and cultural norms and pragmatic solutions, as well as how they experience and assess treatment and care. Basic questions to look into is e.g. if certain health strategies are chosen for specific symptoms, if one's perception of cancer influences care-seeking, and how local relations as well as web-based relations may determine care strategies. Chronic cancer patients are active health users even after successful treatment. Bodily sensations persist and symptoms develop and decline. Several late effects of medical treatment that endure and influence everyday activities, as well as the overall challenge of living a life with a cancer diagnosis, all provide a ground for a focus on the special needs and practices of this complex patient group and the attention required by health services in terms of care and communication.