Marking time: The temporal experience of gastrointestinal cancer
Sonia Khatri
Clinical Nurse Consultant & Colorectal Cancer Care Coordinator, Concord Repatriation General Hospital, Concord NSW
Ian Whiteley
Clinical Nurse Consultant, Stomal Therapy and Wound Management, Concord Repatriation General Hospital, Concord, NSW
Janice Gullick
Clinical Nurse Consultant, Cardiology Concord Repatriation General Hospital; Clinical Associate Professor, Sydney Nursing School, University of Sydney, Sydney, NSW
Carolyn Wildbore
Clinical Nurse Consultant, Gastroenterology, Concord Repatriation General Hospital, Concord, NSW
PP: 146 - 159
Abstract
This study uses Heideggerian Phenomenology to explore the lived experience of gastrointestinal cancer and treatment with a curative intent. Eighteen patients and carers engaged in in-depth, conversational style interviews. Four recurring themes that spoke of the temporal significance of the cancer diagnosis included a recall of intricate details around significant dates; waiting; a changing pace of perceived time and being-towards-death. Fear and anxiety around cancer progression and recurrence underlie these themes. The meaning of time altered so that it was experienced as a precious commodity to be consciously managed in the context of their changed present and future. Being-towards-death was constituted of fear, but allowed the person to redefine meaning and purpose in their life. These insights will better prepare health professionals to guide discussions and provide perspective for the concerns of patients and families, particularly in relation to waiting times for tests and cancer interventions.
Keywords
Phenomenology, colorectal cancer, oesophageal cancer, pancreatic cancer, surgery, temporality, family, caregivers
Article Text
This paper explores the experience and management of bowel, pancreatic and oesophageal cancer. Bowel cancer is the second most common cancer in New South Wales (NSW), Australia. Pancreatic cancer is the 11th most common cancer diagnosed, while oesophageal cancer is ranked 19th (Cancer Institute NSW 2007a;2007b;2007c). This paper aims to use fresh and vivid accounts of the diagnosis and surgical management of gastrointestinal cancer as experienced and embodied within the life-world of patients and families. It is hoped this will lead to new understandings that will inform meaningful improvements in patient care.
Background
A number of researchers have used qualitative methodologies to explore the experience of living with gastrointestinal cancer. A diagnosis of colorectal or oesophageal cancer causes disruption in the ill person and caregiver's life (Houldin 2007; Andreassen, Randers, Näslund, Stockeld & Mattiasson 2006) and the pre-operative period is characterised by fear, questions, isolation and uncertainty (Worster & Holmes 2008; Taylor 2001; Pascal & Endacott 2010). Colorectal patients, particularly those from rural areas, may experience a number of barriers to specialist referral (Bain & Campbell 2000). Subsequent delays of investigations and timely communication of test results leads to greater anxiety (Bain, Campbell, Ritchie & Cassidy 2002; Thurston, Perry & Kirby 2003). In the early postoperative period patients struggle with loss of dignity and body control (Worster & Holmes 2009; Jonsson, Stenberg & Frisman 2010; Taylor, Richardson & Cowley 2010).
People with oesophageal cancer experience a myriad of challenges to their sense of self (Clarke, McCorry & Dempster 2010). Dysphagia and fatigue shape the experience of oesophageal cancer (Andreassen et al 2006) and the illness affects the whole family (Andreasson et al 2005). People tend to resign themselves to the risks of surgery, nurturing beliefs around surgical cure, and idealised medical expertise (McKneally & Martin 2000). Surgery for oesophageal cancer changes the embodied sensations of hunger, satiety, swallowing, taste, and smell, rendering the previously taken-for-granted experience of eating alien (Wainwright, Donovan, Kavadas, Cramer & Blazeby 2007). Little qualitative work is published in the field of pancreatic surgery, but it is known patients with pancreatic cancer suffer high rates of major depression (Mayr & Schmid 2010), and where surgery is indicated, it improves both survival and quality of life (Crippa, Domínguez, Rodríguez, Razo, Thayer, Ryan, Warshaw & Fernández-del Castillo 2008).
Even though there may be a curative intent to surgery, the greatest source of anxiety for people with gastrointestinal cancer is fear of the cancers recurrence (Worster & Holmes 2009), and this is also true for people experiencing other types of cancer (Pascal 2010). According to the Cancer Institute of NSW, the combined five year relative survival for males and females diagnosed with oesophageal cancer is 17%, while pancreatic cancer is less than 10%. The five year survival rate for colorectal cancer is reported to be 65% for males and 66% for females (Cancer Institute of NSW, 2010).
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