Quality of life after oesophagectomy: the patients' perspective.

Abstract

There have been formal publications which address the quality of life after oesophagectomy for oesophageal cancer, but what follows is an account of my own experience as a patient and of the experiences of the many fellow patients and their carers whom I have met during my 14 years as Chairman of the Oesophageal Patients' Association (UK). The Association works closely with clinicians and paramedical professionals and enables former patients to support new patients who have oesophageal problems. Because the incidence of adenocarcinoma is increasing rapidly in the Western world, the need for this type of support will be ever more pressing. I was invited to give the talk on which this article is based at the ISDE Congress in Montreal, Canada, in 1998. My hope is that dissemination of the experiences of others and myself will be of use to the wider clinical world involved in the treatment of this aggressive disease. In 1980, when only in my 40s, I developed an adenocarcinoma of the lower third of my oesophagus. An oesophageal resection, including 30% of my stomach and a pyloromyotomy, was performed. The remaining stomach was brought through my chest and joined to the oesophageal remnant in my neck. There was no nodal involvement. Three years later, I met, for the ®rst time, other patients who had had the same treatment and there was an immediate anity between us, with a feeling of mutual reassurance. This made me realize that others could be similarly helped by such contacts and, with the help of my surgeon, I founded the Oesophageal Patients' Association (OPA), which has been formally in existence since 1985. Since then, contact with over 4000 patients and work alongside the medical teams has given me some insight into quality-of-life aspects. I am quite clear that exchange of experience between new and former patients has a major in uence on patients' quality of life. Written information about these experiences and why they occur is enormously helpful. I left hospital 9 days after my operation with no information about recovery, what to do or not do, what to eat or not to eat. In retrospect, that experience has in fact helped my wife and me to develop the guidance lea ets that OPA now issues. The main problems I experienced were continued weight loss, extreme tiredness, eating very little, dramatic diarrhoea and nausea and milk intolerance. It is during this immediate post-operative period that many patients in the UK feel the isolation of their situation. After the operation, I lost a further 6.5 kg over 8 weeks, having lost 9.5 kg beforehand. I became extremely worried and was reluctant to let my doctor weigh me. My weight then levelled out and slowly increased over the next 9 months until I reached my present weight, i.e. about 6.5 kg lighter than I used to be. A hard way to lose weight! I have never felt so tired in my life as when I got home from hospital. Minor activity caused over-tiredness, and sleeping at night was disturbed (because of some pain). I did not feel that I was getting better. I found the answer was to go to bed (properly) for 2 h in the afternoon during the ®rst 5 or 6 recovery weeks. I have learned that men in particular can ®nd this dicult; they want to be back to normal habits soon after leaving hospital, but the body needs time and respect. Eating little can be more of a problem for the carer than the patient. The carer understandably wants the patient to start eating again after the months of not being able to eat well and of losing weight. It is very frustrating when the patients' favourite foods are prepared and then not really wanted. If you do try and then eat too much, the after-e€ects are dicult Address correspondence to: J. D. Kirby, Oesophageal Patients' Association, 16 White®elds Crescent, Solihull B91 3NU, UK. Tel: (+44) 121 704 9860; Fax: (+44) 121 704 9860; E-mail: opakirby@mcmail.com