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A Long Walk Home Rachel Clark With Naomi Jefferies, John Hasler and David Pendleton Boca Raton London New York CRC Press is an imprint of the Taylor & Francis Group, an informa business First published 2002 by Radcliffe Publishing Published 2018 by CRC Press Taylor & Francis Group 6000 Broken Sound Parkway NW, Suite 300 Boca Raton, FL33487-2742 © 2002 Rachel Clark/Naomi Jefferies CRC Press is an imprint of Taylor & Francis Group, an Informa business No claim to original U.S. Government works ISBN-13: 978-1-85775-906-8 (pbk) This book contains information obtained from authentic and highly regarded sources. While all reasonable efforts have been made to publish reliable data and information, neither the author[s ] nor the publisher can accept any legal responsibility or liability for any errors or omissions that may be made. The publishers wish to make clear that any views or opinions expressed in this book by individual editors, authors or contributors are personal to them and do not necessarily reflect the views/opinions of the publishers. The information or guidance contained in this book is intended for use by medical, scientific or health-care professionals and is provided strictly as a supplement to the medical or other professional's own judgement, their knowledge of the patient's medical history, relevant manufacturer's instructions and the appropriate best practice guidelines. Because of the rapid advances in medical science, any information or advice on dosages, procedures or diagnoses should be independently verified. The reader is strongly urged to consult the relevant national drug formulary and the drug companies' and device or material manufacturers' printed instructions, and their websites, before administering or utilizing any of the drugs, devices or materials mentioned in this book. This book does not indicate whether a particular treatment is appropriate or suitable for a particular individual. Ultimately it is the sole responsibility of the medical professional to make his or her own professional judgements, so as to advise and treat patients appropriately. The authors and publishers have also attempted to trace the copyright holders of all material reproduced in this publication and apologize to copyright holders if permission to publish in this form has not been obtained. If any copyright material has not been acknowledged please write and let us know so we may rectify in any future reprint. Except as permitted under U.S. Copyright Law, no part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying, microfilming, and recording, or in any information storage or retrieval system, without written permission from the publishers. Trademark Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Visit the Taylor & Francis Web site at http://www.taylorandfrancis.com and the CRC Press Web site at http://www.crcpress.com British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. Typeset by Acorn Bookwork, Salisbury, Wiltshire Contents About the author iv About the contributors v Acknowledgements vi Introduction - orienteering and oncology 1 Naomi Jefferies 1 Inside out and upside down - diagnosis 3 2 Ice magic - chemotherapy 19 3 Pick ‘n’ mix - alternative therapies and options 25 4 Roots and roses - my origins and image 39 5 All the King’s horses - surgery 49 6 Tattoos and technology - radiotherapy 71 7 England’s pastures green - coming home 81 8 A panoramic view - the background picture 95 9 The messages for health professionals 113 John Hosier and David Pendleton 10 Epilogue 123 Naomi Jefferies References 133 Index 139 About the author Rachel Clark was born one of twins, in Charing Cross Hospital, London on 22 June 1970. She and her twin were adopted at birth and grew up with their adopted brother and parents in Bromley, Kent. She was educated at Langley Park School for Girls and at the University of Bristol, where she studied psychology and developed a love of rowing. Following graduation Rachel trained as an occupational psycholo gist with Saville and Holdsworth, Surrey, and subsequently worked as a management consultant for Coopers and Lybrand, London. In 1994 she travelled across Asia to take up a two-year secondment in Sydney, Australia. At the age of 2 5 Rachel was diagnosed with a rare head and neck cancer. She spent the following three years undergoing extensive cancer treatment, initially in Sydney and then in London. She started to write an account of her treatment and experiences shortly after her return to the UK in July 1996. She lived in Putney with her two kittens Oscar and Ella. About the contributors Naomi Jefferies and David Pendleton are occupational psychologists. John Hasler is a medical practitioner with a background in general practice and medical education. Acknowledgements The editors would like to thank Dr Jane By water and Mrs Margaret Jefferson for their advice in the preparation of this manuscript for publication. In recognition of love and friendship, this book is dedicated to Geral dine, Mac, and, most of all, to Sarah. The names of the doctors and other health staff mentioned in this book have been changed to protect their anonymity and the names of the hospitals have been removed. Proceeds from the sale of this book are being donated to Help the Hospices and Cancer Research UK. To Succeed To laugh often and much; To win the respect of intelligent people And the affection of children. To earn the appreciation of honest critics And endure the betrayal of false friends, To appreciate beauty; To find the best in others; To leave the world a better place, whereby a healthy child, a garden patch or a redeemed social condition, To know that one life has breathed easier because you have lived; This is to have succeeded. Ralph Waldo-Emerson Introduction - orienteering and oncology Naomi Jefferies ‘Navigating your way through cancer and its treatment is rather like being dropped in a strange city, without a map or a compass. There are no landmarks that you recognise and no familiar features. This city has no signs, no one speaks your language and your requests for help are incomprehensible: they are unable to help you.’ These words began Rachel’s account of her experiences as she underwent the diagnosis and treatment of cancer. Although her particular form of cancer was rare, her emotions and experiences of healthcare were not unusual. Indeed, they mirror those of many people, both those with cancer and those with other conditions. This book documents her story and spells out important messages for patients and the health professionals who look after them. It is, in essence, about the communication and relationships between these groups of people. Her tale is powerful and evocative - a young person’s fight with cancer. However, she is also able to stand back from the fears and frustrations of living with malignant disease, and make sense of her experiences from a wider perspective. It is this ability to recount her poignant observations, sometimes with humour and always with a view to providing learning opportunities for health professionals, that makes this text so valuable. Dr John Hasler and Dr David Pendleton have drawn out some of these learning points from Rachel’s story in an effort to underline that effective healthcare is patient-centred in every sense.
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