Living in ‘Limbo’: Immobility and Uncertainty in Childhood Cancer Medical Care in Argentina

Abstract

In Argentina, approximately half of the children affected by cancer must move for indeterminate periods to receive medical attention in specialized hospitals, which are mostly located in Buenos Aires. This geographic displacement, as well as the uncertainty caused by the disease and its medical treatment imply, both certain spatial-temporal transformations due to the adaptation to a new migratory context and the reconfiguration of everyday life in the context of hospitalization. The period of stay in Buenos Aires is also determined by the rhythms of the illness and its medical treatment. In this way, the impossibility of returning to the place of origin configures a continuum of mobility/immobility that defines a liminal period, affecting both children and their primary caregivers. Liminality refers to the margin or transition that is generated between a past and a future structure (Turner 1992, 359). In these transitions, the liminal person is separated from the group they usually coexist with in order to enter a limbo that is neither the space inhabited before, nor any other defined structure. In my doctoral research (Brage 2018), I analysed the migration of child cancer patients from the Northwest and Northeast of Argentina to Buenos Aires. I examine both illness and mobility as assembled events, alluding to the fact that both are not experienced as isolated but, on the contrary, as a ‘unit of experience’ (Turner and Bruner 1986, 39). The aim of this chapter is to share some reflections about these liminal experiences associated with cancer care in Argentina. These experiences are characterized by ambiguity, being ‘out of time’, not being here or there, the loss of ties and social isolation, bodily, social, subjective and spatial-temporal transformations. The methodology consisted of ethnographic fieldwork (participant observation and in-depth interviews) performed as part of my doctoral research. The fieldwork was carried out between April 2013 and December 2015 in three main areas: a paediatric public hospital of high complexity care, an NGO focused on childhood cancer and, finally, a hotel where these families were hosted during the period of residence in Buenos Aires.