Embodied uncertainty - Exploring sensorial and existential dimensions of everyday life after cancer

Abstract

In Norway, as in other countries in the northern hemisphere, an increasing number of people survive after cancer diagnosis and treatment. Earlier studies have shown that life after cancer can be challenging in different ways, which makes it important to gain knowledge about this group to be able to meet their needs in the future. The main objective of this project was to understand the illness experiences and care-seeking processes of former cancer patients as they take place in daily life and social relations. The thesis builds on ethnographic fieldwork carried out between January 2014 and January 2015, and the main data collection method was repeated semi-structured interviews with eight participants during that period. The findings are presented in three papers, forming the main analytical arguments of the thesis. The first article explores the process of reestablishing the skill of interpreting bodily sensations after cancer treatment. By using the concepts of sensation schemas and sensation scripts, we explored how sensation schemas of cancer dominated in the initial period, while schemas of late effects and reduced tolerance of daily life activities gradually became more important as time went by. In the second article we explore how the participant of the study share or not share the uncertainties of living after cancer treatment with relevant others. We found that the participants in the study were keeping most of their uncertainties to themselves, but sometimes had a need and felt expectations to share worries with others. An important value behind the balancing, was a wish to maintain ‘normal’ everyday life and social situations as far as possible. The third article explores the process of gaining insight into an illness situation through interviews that focus on the sensorial. This process of emphatic understanding of the participant’s situation came about through sensorial imagination that evoked the researchers emotions, and emotions became a portal into understanding the existential uncertainty that the participants had expressed. This thesis contributes to the field of cancer with enhanced knowledge of how the cancer experience may influence the way bodily sensations are interpreted and handled. It provides insight into the process of regaining everyday health competence, in the light of a changed health situation after cancer. It also shows how regaining everyday health competence is possible with new contextualization, built on knowledge of normal late effects after cancer treatment, and the experience gained from living within a ‘new normal’. The thesis sheds light on how social relations and everyday life is handled in a context of worries and uncertainties after cancer. All these findings may have general relevance for other severe or chronic illnesses that have the potential to impact life in similar ways. In addition, the thesis shows how the sensorial is an important component of empathy and intersubjective understanding, as well as an important aspect and tool in the study of illness experiences.