Table Of ContentBeing a Cancer
Patient's Carer
A guide
Wesley C Finegan
MB BCh BAG MRCGP MICGP D Pall Med
Boca Raton London New York
CRC Press is an imprint of the
Taylor & Francis Group, an informa business
CRC Press
Taylor & Francis Group
6000 Broken Sound Parkway NW, Suite 300
Boca Raton, FL 33487-2742
© 2005 Wesly C. Finegan
CRC Press is an imprint of Taylor & Francis Group, an Informa business
No claim to original U.S. Government works
This book contains information obtained from authentic and highly regarded sources. Reasonable efforts have been made to
publish reliable data and information, but the author and publisher cannot assume responsibility for the validity of all materials
or the consequences of their use. The authors and publishers have attempted to trace the copyright holders of all material repro-
duced 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.
For permission to photocopy or use material electronically from this work, please access www.copyright.com (http://www.copy-
right.com/) or contact the Copyright Clearance Center, Inc. (CCC), 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400.
CCC is a not-for-profit organization that provides licenses and registration for a variety of users. For organizations that have been
granted a photocopy license by the CCC, a separate system of payment has been arranged.
Product or corporate names may be trademarks or registered trademarks, and are used only for identifica-
tion and explanation without intent to infringe.
Contents
About the author v
Acknowledgements vi
Introduction vii
How do you use this book? viii
Dedication x
Section 1: Preparing to be a Carer 1
1 On becoming a carer 3
2 BEFRIENDing the patient 7
3 Taking time for yourself 11
4 Thinking about your own health 14
5 Taking responsibility for the patient's personal affairs 21
6 Financial issues associated with being a carer 23
Section 2: Plain Speaking: Communication 27
7 The patient has been given bad news 29
8 You know the patient has cancer before they do 33
9 The staff don't seem to have time to speak to me 36
10 There is not enough privacy for discussions with the staff 39
11 Avoiding collusion with the patient 41
Section 3: Practical Problems 47
12 The patient has a very poor appetite 49
13 The patient is breathless 54
14 The patient is having chemotherapy 57
15 The patient is requesting complementary therapy 60
16 The patient is confused 62
17 The patient is constipated 65
18 The patient is depressed 69
19 The patient has diarrhoea 73
20 The patient is not drinking enough 75
21 The patient needs equipment to assist with day-to-day care 77
22 The patient has a fistula 82
23 The patient needs to get out and about more 86
24 The patient is jaundiced 88
25 The patient has lymphoedema 90
26 The patient's mouth is dry 94
27 The patient's mouth is sore 98
28 The patient seems to be in pain 102
29 The patient needs practical care 105
30 The patient is having radiotherapy 111
iv Contents
31 The patient is feeling sick 113
32 The patient's skin is at risk 117
33 The patient has difficulty swallowing 120
34 The patient is weak 123
Section 4: Psychological, Social and Spiritual Issues 127
35 The patient's cancer was in remission but has recurred 129
36 The patient's treatment does not appear to be working 131
37 Taking the patient home from hospital 134
38 The patient wishes to discuss spiritual matters 138
39 The patient is dying 157
40 Euthanasia, advance directives and related topics 160
41 A further examination of the body has been ordered 165
42 Coping with bereavement 167
Section 5: Appendices 171
Appendix 1: Glossary of medical words 173
Appendix 2: Patient's pain record 176
Appendix 3: Medication chart 177
Appendix 4: Useful organisations 178
Appendix 5: Who's who? 182
Index 185
About the author
I was aged three when I first announced that I wanted to be a doctor. In 1978 I
achieved that aim when I qualified from The Queen's University of Belfast. After a
further four years of training, I entered general practice in east Sussex.
In 1976 I met Alice and we were married in 1979. We have two children, Chris
and Sharon.
While working in general practice, I developed an increasing interest in caring
for patients with cancer and this led to me being appointed as a consultant in
palliative medicine in central Scotland in 1991.
In 1994 I became a cancer patient myself and had to retire from my hospice post
on the grounds of ill health. I was very fortunate to be offered a post with the
University of Dundee where I continue to offer some input into their courses on
cancer and palliative care.
Last year I had another recurrence of my cancer. A month after completing
treatment, Alice also developed cancer. As her carer, I have not needed to use many
of the skills I learned at medical school but I did realise how useful it was to have
my specialist knowledge and know what to ask and whom. Caring for each other
has taught us a lot and we have thought about many things that we never had to
consider before.
Hopefully, by sharing some of the things Alice and I have learned while caring
for each other, we can make your role as carer a little easier.
Wesley C Finegan
November 2004
Acknowledgements
I would like to thank my wife Alice, who taught me so much about being a carer
both when she was caring for me and latterly when I became her carer.
I acknowledge, with gratitude, the help and advice offered by Patricia Manson
BDS in her comments on the chapters on coping with a dry mouth and coping
with a sore mouth.
I also wish to thank all the people who taught me so much about caring -
especially my patients and their families.
Finally I thank the staff at Radcliffe Publishing, who have advised me and helped
me throughout the producing of this book.
Introduction
It is estimated that one in eight people are carers, but not all of these people are
caring for cancer patients. Because the relationship between carer and patient is so
varied, including family, professional carers, friends and lay carers, the term 'the
patient' has been chosen as the most universally applicable wording to cover the
various relationships between the carer and the person being cared for.
This book is primarily written for the non-professional carer and is intended to
offer practical advice and ideas. Many of the topics are also covered from a slightly
different perspective in the companion volume Trust Me, I'm a fJe£teF Cancer Patient
(Radcliffe Medical Press, 2004. ISBN 1 85775 877 3). This is unavoidable since both
books need to be free-standing and not dependent on each other.
How do you use this book?
I have been a cancer patient for ten years and more recently I have cared for my
wife Alice, who also has cancer. I have been increasingly aware of the need for
patients, doctors, nurses and other carers to work together to achieve realistic and
achievable goals. That's why I wrote this book.
As a child, I once saw a bicycle with two riders. I asked my mother about it and
she explained that it was a 'tandem'. She explained how one person steered but
both shared the work of pedalling. I have used the same idea in this book and in
the companion volume Trust Me, I'm a ~ Cancer Patient. I'll try and steer you
through the maze of dedsions and practical problems you and the patient will
face, always with the concept of working 'in tandem' with the doctors and nurses
who are looking after the patient.
How can you all work 'in tandem'? The word 'tandem' is used in the chapters to
break the problem into six sections to make it easier for you to find the
information you need. The TANDEM acronym breaks each of the chapters into
the following sections.
~
The doctor says
Here I will give you some relevant information to help you understand more about
the problem being discussed.
We then use the word TANDEM to examine the various issues from different
aspects.
TThink
You are fadng new situations regularly as a carer. Hopefully I can help you think
through the issues you might have to face.
A Ask
There is so much to learn. Where does one start? What do you need to know and
who can tell you the answers? I'll try and help you with some of the questions I
have asked.
tl5
NNote
Making a note of a relevant detail now might save you a lot of difficulty
remembering those elusive facts in a few weeks' time!
~
DDo
Here I will offer you some practical ideas that have been tried and tested by my
patients and some that worked for Alice and me.
How do you use this book? ix
EExplore ~
Sometimes we want to know more or find out about something we would like to
know about. I'll try and guide you to the best sources of information.
W
M More Information
If there is something that has not been said already and it's relevant, you'll find it
here.
Throughout the text I assume that you have no specialist training as this is often
the case where family members and others take responsibility for daily care. For
this reason, you will be advised to seek advice from a professional carer but I do
recognise that some readers will have the necessary skills and knowledge to make
their own decisions.
To appeal to as wide a readership as possible, I refer to 'the patient' because you
might not necessarily be a family member, although this will often be the case.
Where the word 'relative' is used, this can mean a spouse, partner or any family
member.
