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Living with Learning Disabilities, Dying with Cancer: Thirteen Personal Stories (PDF) PDF

274 Pages·2009·1.04 MB·English
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Living with Learning Disabilities, Dying with Cancer of related interest Speaking of Dying A Practical Guide to Using Counselling Skills in Palliative Care Louis Heyse-Moore Foreword by Dr Colin Murray Parkes ISBN 978 1 84310 678 4 Dying, Bereavement and the Healing Arts Edited by Gillie Bolton Foreword by Baroness Professor Ilora Finaly of Llandaff ISBN 978 1 84310 516 9 Authentic Dialogue with Persons who are Developmentally Disabled Sad Without Tears Jennifer Hill ISBN 978 1 84905 016 6 Living with Learning Disabilities, Dying with Cancer Thirteen Personal Stories Irene Tuffrey-Wijne Foreword by Professor Sheila Hollins Jessica Kingsley Publishers London and Philadelphia First published in 2010 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Irene Tufrey-Wijne 2010 Foreword copyright © Sheila Hollins 2010 All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) with- out the written permission of the copyright owner except in accordance with the pro- visions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Safron House, 6–10 Kirby Street, London EC1N 8TS. Applications for the copyright owner’s written permission to re- produce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data Tufrey-Wijne, Irene, 1963- Living with learning disabilities, dying with cancer : thirteen personal stories / Irene Tufrey-Wijne ; foreword by Sheila Rollins. p. cm. Includes bibliographical references and index. ISBN 978-1-84905-027-2 (alk. paper) 1. Cancer--Patients--Great Britain--Biography. 2. Learning disabled--Great Britain--Biography. I. Title. RC265.5.T84 2010 362.196’9940092--dc22 2009017875 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 84905 027 2 ISBN pdf eBook 978 0 85700 200 6 Printed and bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear This book is dedicated to the memories of those people whose stories are told in this book, and who died between 2005 and 2009 Contents ACKNoWLEDGEMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Foreword by Professor Sheila Hollins ................................ 11 PREFACE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Chapter 1: Three Stories .................................................... 17 John Davies 17; Vincent Sweeney 29; Nick Ballard 41 Chapter 2: Diagnosis and Treatment ................................. 54 Lily Lamb 57; The cancer diagnosis; 57 Cancer treatments 62; Summary 72 Chapter 3: Truth-telling and Understanding .................... 75 Lily Lamb’s understanding of cancer 75; Were people told the truth? 77; Understanding cancer and dying 87; Sally Burnett: ‘Don’t tell her’ 91; Breaking bad news 101; Summary 106 Chapter 4: Family and Friends ......................................... 108 Lily Lamb and her family 108; The importance of families 111; Pete Carpenter and his sister Daphne 119; Friends 124; Summary 129 Chapter 5: Unprepared Services, Inexperienced Carers ................................................................................. 131 Lily Lamb and her carers 131; Pete Carpenter and his carers 135; Services were not prepared for death 142; The emotional impact of caring 150; Health care professionals 154; Summary 162 Chapter 6: Dependent Lives............................................. 164 The story of Lily Lamb’s life 164; Deprivation and dependence 166; Forced jollity179; The importance of listening 184; Summary 187 Chapter 7: Resilience ........................................................ 190 Richard Horwood: ‘Don’t ever give up’ 190; The features of resilience 196; Summary 203 Chapter 8: Dying and Beyond .......................................... 204 Lily Lamb’s death 205; Dying; 206 Funerals 212; Grieving and remembering 216; Summary 219 Chapter 9: Learning Lessons............................................ 222 What did people want and need? 223; Conclusion 234 Appendix 1: The people in This Book . . . . . . . . . . . . . . 236 Appendix 2: MeThods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241 endnoTes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261 resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 263 references . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 266 index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269

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