Death and the Disease: Inside the Culture of Childhood Cancer

Abstract

This chapter is about death, and the possibility and ever presence of death, as experienced by the families of children with cancer. It is about what we will call the culture of childhood cancer — those primary meanings and shared perspectives which develop in relation to the trajectory of uncertainty which underlies the social and emotional impact of the disease and its treatment. The culture of childhood cancer has both subjective and objective forms. The former, and most significant, are the meanings and experiences which are mobilised around the trajectory of uncertainty; they are founded upon the unpredictability inherent in the diagnosis and treatment of cancers. The latter are represented by particular professional sites and social relationships (with carers and other families) which families encounter in the trajectory of uncertainty. These are the bases for a community of cancer, within which the positive aspects of the culture are most fully developed. The distinction between the culture and community allows us to recognise and acknowledge that some families have little participation in the community of cancer (by choice or by default) and are only peripherally drawn into the culture (or at least its positive aspects).¹