Ghosts in the machinery: Living with and beyond radiotherapy treatment for gynaecological cancer.

This paper explores post-treatment experiences of women who have had radiotherapy for gynaecological cancer. Drawing on data from a project which explored post-treatment wellbeing, conceptual metaphors of ghosts/haunting are used to engage with enduring legacies of cancer and 'neglected matters' in post-treatment trajectories. Current arrangements of care contribute to the idea that participants are 'out of the other side of cancer' once active treatment completes. Despite broader ambitions for holistic cancer rehabilitation, fragilities of body and mind persist, even when the outward representation is one of health, of looking well, of moving on. We show how neglected matters of cancer (visceral late effects, psychological suffering and lives not lived) are part of living with and beyond cancer. These 'ghosts' manifest in chronic states of unsettledness that are temporarily relieved by individualised 'fixes', such as mobilisation of 'mind over matter' discourse and mindfulness. This discourse and its associated tools are a powerful yet impoverished framing of approaches to living with and beyond cancer. We argue for the need to attend to 'neglected matters' of post-treatment trajectories differently.

The ambivalence of radiotherapy: Re-framing effects and their temporalities in treatment for gynaecological cancer.

Within the biomedical paradigm, treatment effects are typically split into primary and secondary effects with temporality playing a key role in this separation. Yet, this kind of ordering of effects with some effects understood as happening on the 'side', secondary and temporary, does not fit with how they are experienced by many patients who undergo treatment for cancer. Drawing on empirical data from a research project that gathered narratives of women's experiences of radiotherapy for gynaecological cancer, we observe radiotherapeutic effects that are experienced as ambivalent and temporally diverse and as overlapping demands that the women endure and manage. We propose Derrida's concept of pharmakon as a relevant and useful analytic for understanding radiotherapy treatment, thus bringing into focus the ambivalent effects of radiotherapy - it is both therapeutic and toxic. Pharmakon, we argue, offers a way of disrupting the logics that govern current practices of therapeutic radiotherapy, and provides a way to re-negotiate the ordering and temporal understandings and practices of therapeutic efficacy, outcome and accountability of radiotherapy treatment - away from a temporal fragmentation of treatment effects and patients' bodily experiences to a focus on how best to support the whole patient in living with the ambivalent, temporally diverse and overlapping effects and demands of treatment.

Deathbed Etiquette - The Guide: A Qualitative Study Exploring the Views of Practitioners on its Introduction into End-of-Life Care Settings.

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a 'Deathbed Etiquette' guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words 'death' and 'dying' were identified. Most participants also expressed reservations about the title, with the word 'deathbed' found to be old-fashioned and the word 'etiquette' not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for 'mythbusting' death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The 'Deathbed Etiquette' guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.