Day by Day - ChemoReady.ca
Day by Day - ChemoReady.ca
Day by Day - ChemoReady.ca
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Incorporating<br />
Side <strong>by</strong> Side<br />
From the team support approach<br />
of Side <strong>by</strong> Side, to <strong>Day</strong> <strong>by</strong> <strong>Day</strong>’s<br />
in-depth look at the physi<strong>ca</strong>l and emotional side<br />
effects experienced <strong>by</strong> <strong>ca</strong>ncer<br />
patients as they face<br />
chemotherapy, Moni<strong>ca</strong><br />
Wright-Roberts continues to<br />
advo<strong>ca</strong>te for the needs of the<br />
patient and their family.<br />
SIDE BY SIDE IN 1991<br />
MONICA, JODY AND RYAN IN 2001<br />
“Moni<strong>ca</strong> speaks from the perspective of someone who has made the<br />
journey. Her understanding that <strong>ca</strong>ncer is truly a ‘family affair’<br />
is what inspired her to write her first book, Side <strong>by</strong> Side.<br />
<strong>Day</strong> <strong>by</strong> <strong>Day</strong> complements that book as she looks at the physi<strong>ca</strong>l and<br />
emotional challenges posed <strong>by</strong> chemotherapy.”<br />
DR. S. VERMA<br />
“Chemotherapy is probably as stressful as being diagnosed with<br />
<strong>ca</strong>ncer and it places heavy physi<strong>ca</strong>l and emotional stress on the<br />
patient. This book, which includes the perspective of patients and<br />
their experience as well as health <strong>ca</strong>re providers, will be one of the<br />
most important sources of information for future patients. I hope<br />
it will help to relieve some of the hardships and help to reintegrate<br />
them back into a normal and healthy life.”<br />
DR. S. GLÜCK<br />
N1129E<br />
PHOTO: ASHLEY RANSON<br />
DAY BY DAY<br />
Incorporating<br />
Side <strong>by</strong> Side<br />
Facing the<br />
challenge of <strong>ca</strong>ncer:<br />
a practi<strong>ca</strong>l resource<br />
and support guide<br />
BY MONICA WRIGHT-ROBERTS AND DR. ROY M. CLARK
This book has been extremely inspirational to<br />
many <strong>ca</strong>ncer patients and families over the years.<br />
Amgen Canada is proud to reprint this book in<br />
honour of Moni<strong>ca</strong> Wright-Roberts.<br />
This book meets the Canadian Association<br />
of Nurses in Oncology guidelines for<br />
edu<strong>ca</strong>tional content, and will support<br />
nurses in the area of patient <strong>ca</strong>re.
Incorporating<br />
Side <strong>by</strong> Side<br />
MONICA WRIGHT-ROBERTS<br />
DR. ROY M. CLARK<br />
MONICA WRIGHT-ROBERTS, 1953-2002<br />
To describe Moni<strong>ca</strong> Wright-Roberts as a breast <strong>ca</strong>ncer ‘survivor’<br />
would be to do her an injustice. For the over 13 years that she<br />
battled this disease, she also recognized that each day was a gift to<br />
be enjoyed to the fullest.<br />
There is no doubt that her diagnosis of <strong>ca</strong>ncer was a <strong>ca</strong>talyst that<br />
led her to raise awareness of the disease. She was an advo<strong>ca</strong>te and<br />
pioneer. Moni<strong>ca</strong> was one of the first individuals to cross the<br />
country speaking to patients, families and health<strong>ca</strong>re professionals<br />
at a time when few people were discussing the disease.<br />
Moni<strong>ca</strong> did so much in her shortened lifetime, even with the<br />
limitations that <strong>ca</strong>ncer imposed on it. She inspired and challenged<br />
friends and colleagues with her passion for life, her enthusiasm and<br />
her optimism.
MONICA WRIGHT-ROBERTS<br />
Moni<strong>ca</strong>’s life took a dramatic turn when in 1988, at the height of<br />
her professional <strong>ca</strong>reer, she was diagnosed with progressive breast<br />
<strong>ca</strong>ncer. This experience, including her battle with chemotherapy,<br />
radiation and surgery and coping as an independent mother,<br />
shaped her role as business owner, philanthropist and outspoken<br />
advo<strong>ca</strong>te inspiring groups of television and in-person audiences<br />
across the country. Volunteer President and founder of the<br />
National Breast Cancer Fund, a grassroots organization dedi<strong>ca</strong>ted<br />
to raising and distributing funds to <strong>ca</strong>ncer centres in communities<br />
across Canada, Moni<strong>ca</strong> was also a spokesperson for the Terry Fox<br />
Foundation; board member of Ronald McDonald House, Toronto<br />
Children’s Care Inc., and national co-chair of Princess Margaret<br />
Hospital Foundation Breast Centre Women’s Committee. In<br />
addition to her previous book, Side <strong>by</strong> Side, which has received<br />
criti<strong>ca</strong>l acclaim <strong>by</strong> both health <strong>ca</strong>re professionals and <strong>ca</strong>ncer<br />
patients, Moni<strong>ca</strong> produced documentaries for prime-time television<br />
and edu<strong>ca</strong>tional videos aimed at <strong>ca</strong>ncer patients and health <strong>ca</strong>re<br />
professionals.<br />
DR. ROY M. CLARK<br />
During 35 years in the practice of radiation oncology, Dr. Clark’s<br />
principal interest has been the diagnosis and treatment of breast<br />
<strong>ca</strong>ncer. He has written over 80 papers which have been presented<br />
<strong>by</strong> invitation in European and North Ameri<strong>ca</strong>n centres. His work in<br />
breast conservation at the Princess Margaret Hospital is well known<br />
and has signifi<strong>ca</strong>ntly influenced the management of breast <strong>ca</strong>ncer<br />
both nationally and internationally. At the time of his retirement in<br />
1995 he was Radiation Oncologist at the Princess Margaret<br />
Hospital, Toronto and also at Toronto General Hospital;<br />
Consultant Radiation Oncologist at The Wellesley Hospital,<br />
Toronto and Professor, Faculty of Medicine, University of Toronto,<br />
Department of Radiation Oncology. Dr. Clark was cited in The<br />
Best Doctors in Ameri<strong>ca</strong> in 1992-1993 and 1994-1995, and is also<br />
listed in the Canadian Who’s Who. His work has appeared in<br />
numerous publi<strong>ca</strong>tions and he has been a frequent presentor at<br />
seminars and symposiums across North Ameri<strong>ca</strong> and Europe.
Incorporating<br />
Side <strong>by</strong> Side<br />
Made possible <strong>by</strong> the generous support of<br />
AMGEN Canada Inc.<br />
and the<br />
National Breast Cancer Fund<br />
BOOK DESIGN AND PRODUCTION: ROGER MURRAY AND ASSOCIATES INCORPORATED
6 DAY BY DAY<br />
Sponsors<br />
AMGEN CANADA INC.<br />
AMGEN Canada Inc., along with its parent company,<br />
AMGEN Inc., based in California, is the world’s<br />
leading research-based biotechnology company, in<br />
the business of advancing human health<strong>ca</strong>re <strong>by</strong><br />
providing important and meaningful products to<br />
patients. Our goal is to improve the lives of patients<br />
at a time when they need the most help and support.<br />
Over the years, AMGEN Canada Inc. has made a<br />
major commitment to patient edu<strong>ca</strong>tion. By working<br />
with oncologists, other health<strong>ca</strong>re professionals and<br />
<strong>ca</strong>ncer survivors, we have created patient edu<strong>ca</strong>tion<br />
materials to help people become informed<br />
participants in their own therapy. To that end, we are<br />
proud and honoured to be a sponsor of this new<br />
publi<strong>ca</strong>tion.<br />
NATIONAL BREAST CANCER FUND<br />
The National Breast Cancer Fund (NBCF) was<br />
established in 1995 to provide direct financial<br />
support for breast <strong>ca</strong>ncer research and all aspects of<br />
the management of this disease, targeting programs<br />
across Canada. The NBCF has committed to funding<br />
research and treatment centres in every Canadian<br />
province and territory.
This book could not have been produced without the valuable input of the<br />
following individuals:<br />
DR. YASMIN ALAM, FRCP(C)<br />
Medi<strong>ca</strong>l Oncologist, Windsor Regional Cancer Centre<br />
DR. STEFAN GLÜCK, MD, PH.D<br />
Medi<strong>ca</strong>l Oncologist and Associate Professor<br />
Tom Baker Cancer Centre, University of Calgary<br />
BARBARA JOUDREY R.N., CON(C)<br />
Nurse Coordinator, In-Patient Unit, Moncton Hospital<br />
DR. KATHLEEN PRITCHARD, MD, FRCPC<br />
Head, Division of Clini<strong>ca</strong>l Trials and Epidemiology<br />
Toronto-Sunnybrook Regional Cancer Centre<br />
JEAN REMMER<br />
Social Worker, Hope & Cope, Montreal<br />
DR. GARY RODIN<br />
Head of the Psychosocial Oncology Program<br />
Princess Margaret Hospital, Toronto<br />
BRIAN C. STILLER<br />
President, Tyndale College & Seminary, Toronto<br />
KATHY THOMSON, R.N., M.N.<br />
Director, Breast Cancer Centre of Hope, Winnipeg<br />
DR. SHAILENDRA VERMA, MD, FRCPC<br />
Medi<strong>ca</strong>l Oncologist, Ottawa Regional Cancer Centre<br />
Assistant Professor, Department of Medicine, University of Ottawa<br />
We also thank all of those patients who shared their experiences with us.<br />
PRINTED IN CANADA.<br />
ISBN 0-9687856-1-1<br />
Copyright ©2007 Roger Murray and Associates Incorporated, all rights reserved.<br />
No part of this publi<strong>ca</strong>tion may be reproduced, stored in or introduced into a retrieval<br />
system, or transmitted, in any form, or <strong>by</strong> any means (electronic, mechani<strong>ca</strong>l,<br />
photocopying, recording or otherwise) without the prior written permission of the<br />
publisher.<br />
CANO has made every effort to ensure that information included within this program is<br />
accurate. The information included <strong>ca</strong>nnot substitute for medi<strong>ca</strong>l advice and the<br />
association makes no guarantees, nor <strong>ca</strong>n it assume any legal liability for the accuracy,<br />
completeness, or usefulness of such information or for any damage incurred directly or<br />
indirectly from the information. Reference to any specific product does not imply its<br />
endorsement, recommendation or favoring <strong>by</strong> the Canadian Association of Nurses in<br />
Oncology.<br />
®Registered Trade Mark of AMGEN Inc. DAY BY DAY 7
8 DAY BY DAY<br />
Dedi<strong>ca</strong>tion<br />
During nine years of travelling coast to coast,<br />
spreading messages of hope and empowerment,<br />
I have met the most amazing, dynamic and<br />
vibrant people. <strong>Day</strong> <strong>by</strong> <strong>Day</strong> is dedi<strong>ca</strong>ted to all<br />
the <strong>ca</strong>ncer patients, their families and their<br />
health <strong>ca</strong>re givers, who have inspired and<br />
motivated me to continue on this journey.<br />
Most of all <strong>Day</strong> <strong>by</strong> <strong>Day</strong> is dedi<strong>ca</strong>ted to my<br />
children, Ryan and Jody, who from the start<br />
have given me the strength I need to go on<br />
each and every day. They are wonderful,<br />
talented and kind human beings.
Foreword<br />
It was my privilege to work with Moni<strong>ca</strong> Wright-<br />
Roberts as her medi<strong>ca</strong>l oncologist. I first met Moni<strong>ca</strong><br />
only a few weeks after she was first diagnosed with<br />
breast <strong>ca</strong>ncer. Moni<strong>ca</strong> was an independent woman<br />
with a business and two young children whose life<br />
had been ‘changed in a moment’. Moni<strong>ca</strong>’s world<br />
was turned upside down more than once since that<br />
time but she never stopped coping – and coping in<br />
the most constructive and creative of ways. She raised<br />
two lovely children, found a new <strong>ca</strong>reer as a breast<br />
<strong>ca</strong>ncer advo<strong>ca</strong>te and founded the National Breast<br />
Cancer Fund which raised money for breast <strong>ca</strong>ncer<br />
research and edu<strong>ca</strong>tion across Canada. Moni<strong>ca</strong> also<br />
spoke publicly about breast <strong>ca</strong>ncer from the point<br />
of view of the patient to a wide variety of audiences<br />
in a moving, unique and effective way.<br />
In 1993, Moni<strong>ca</strong> wrote Side <strong>by</strong> Side – a practi<strong>ca</strong>l<br />
guide for wellness team members – which has been<br />
a valuable guide for many <strong>ca</strong>ncer patients. This book,<br />
<strong>Day</strong> <strong>by</strong> <strong>Day</strong>, once again provides practi<strong>ca</strong>l and<br />
accurate information to <strong>ca</strong>ncer patients dealing with<br />
diagnosis and chemotherapy. It provides both<br />
inspiration and a practi<strong>ca</strong>l approach that will help any<br />
patient in dealing with the physi<strong>ca</strong>l and emotional<br />
challenges they may face.<br />
KATHLEEN I. PRITCHARD, MD, FRCPC<br />
Dr. Kathleen<br />
Pritchard is Head,<br />
Division of<br />
Clini<strong>ca</strong>l Trials<br />
and Epidemiology<br />
at Toronto-<br />
Sunnybrook<br />
Regional Cancer<br />
Centre and<br />
Professor,<br />
Department of<br />
Medicine, Faculty<br />
of Medicine, at<br />
the University<br />
of Toronto.<br />
DAY BY DAY 9
10 DAY BY DAY<br />
Introduction<br />
You have just received the news that you have<br />
<strong>ca</strong>ncer. Your worst fears have been realized, and for<br />
the moment you are unable to concentrate on what<br />
your doctor is saying. His voice recedes as your mind<br />
freezes, trying to come to grips with what this<br />
diagnosis will mean to you. You know there is a<br />
battle ahead, but how do you arm yourself to take<br />
part? What do you need to know? How will it affect<br />
your personal life, your business life? How will you<br />
tell your family, friends and business associates? What<br />
will be their reaction – and will they be there for you,<br />
to support you when you need them the most?<br />
Inevitably life will change, but it is possible to create<br />
for yourself what Dr. Wendy Harpham, herself a<br />
Lymphoma survivor, has termed a ‘new normal’.<br />
(After Cancer: A Guide to Your New Life). There is<br />
medi<strong>ca</strong>tion available to help reduce some of the side<br />
effects you will experience as you go through<br />
treatment. There are ways in which family and friends<br />
<strong>ca</strong>n positively support you. Knowledge is power, and<br />
the more knowledgeable you are about the silent<br />
enemy that has invaded your body, the more<br />
powerful you will be as you battle it day <strong>by</strong> day.<br />
This book has been designed to give you that<br />
knowledge. In her previous book, Side <strong>by</strong> Side,<br />
Moni<strong>ca</strong> Wright-Roberts described how friends,
neighbours, and business associates put together a<br />
team, designed to help her face the demands that<br />
<strong>ca</strong>ncer placed on her day-to-day life. Dr. R.M. Clark,<br />
former Professor, Radiation Oncology at The Ontario<br />
Cancer Institute/Princess Margaret Hospital, says<br />
that Side <strong>by</strong> Side “gives suggestions that could make a<br />
real difference in the quality of someone’s life and<br />
peace of mind.” Many of those suggestions, along<br />
with Moni<strong>ca</strong>’s personal story, are included in this<br />
book in the section beginning on page 35.<br />
<strong>Day</strong> <strong>by</strong> <strong>Day</strong> takes the <strong>ca</strong>ncer patient a step further, on<br />
an in-depth look at the physi<strong>ca</strong>l and emotional<br />
journey you will embark on as you undergo<br />
chemotherapy. It outlines the questions you need to<br />
ask, and gives insight on what to expect, and how to<br />
deal with the changes in lifestyle that lie ahead of you,<br />
as you seek to put in place some normality in the face<br />
of what <strong>ca</strong>n feel like an overwhelming situation.<br />
In understanding the needs of <strong>ca</strong>ncer patients across<br />
Canada, AMGEN has developed, and will continue to<br />
develop, informational and edu<strong>ca</strong>tional materials to<br />
ensure that <strong>ca</strong>ncer patients are well informed, feel<br />
empowered and are able to ‘take control’ of their<br />
disease.<br />
MIKE WOOLCOCK, DIRECTOR, MARKETING AND SALES<br />
AMGEN Canada Inc.<br />
“Good communi<strong>ca</strong>tion<br />
between doctor<br />
and patient is<br />
criti<strong>ca</strong>l. In your<br />
initial visit with<br />
your oncologist<br />
it’s vital that you<br />
are given the<br />
information you<br />
need and that you<br />
have a chance to<br />
ask your questions.<br />
Be<strong>ca</strong>use there is so<br />
much information<br />
to take in and<br />
patients are<br />
usually feeling<br />
overwhelmed I<br />
always arrange a<br />
date for a follow-up<br />
meeting.”<br />
DR. STEFAN GLÜCK<br />
MD, PH.D<br />
Medi<strong>ca</strong>l Oncologist and<br />
Associate Professor<br />
Tom Baker Cancer Centre<br />
University of Calgary<br />
DAY BY DAY 11
Inside<br />
Improving the Chemotherapy Experience 13<br />
More than fifty percent of people diagnosed<br />
with <strong>ca</strong>ncer receive chemotherapy. Everyone’s<br />
experience is different depending on their type<br />
of <strong>ca</strong>ncer, their age, and the drug regimen<br />
they are on, but the goal for all patients is for<br />
them to have the best experience possible.<br />
Questions and Answers 27<br />
After the numbing disbelief come the<br />
questions. Getting the answers you need <strong>ca</strong>n<br />
make all the difference to your ability to cope<br />
with what lies ahead.<br />
Side <strong>by</strong> Side 35<br />
SIDE BY SIDE has proven to be a valuable tool<br />
for thousands of <strong>ca</strong>ncer patients. It could make<br />
a world of difference to you in your fight.<br />
Patient Information 55<br />
After-hours clinic numbers; diagnosis and<br />
treatment plan; prescribed medi<strong>ca</strong>tions;<br />
treatment dates and personal drug plan<br />
assessment forms. Keep all the information in<br />
one place for easy access.<br />
Resources / Notes 65<br />
Books to lift your spirits; websites to visit;<br />
organizations that understand what you are<br />
going through, and a place to make notes.
Improving the<br />
Chemotherapy<br />
Experience
Improving the<br />
Chemotherapy<br />
Experience<br />
14 DAY BY DAY<br />
As you discuss with your doctor the treatments<br />
available for your specific type of <strong>ca</strong>ncer, the words<br />
‘surgery’, ‘radiation’ and ‘chemotherapy’ may all be<br />
discussed. There are many stereotypes associated with<br />
chemotherapy. You may have known someone who<br />
has undergone treatment, but even if their<br />
chemotherapy took place as recently as ten years ago,<br />
your experience will be very different from theirs.<br />
New treatments and supportive <strong>ca</strong>re medi<strong>ca</strong>tions are<br />
now available, but your health team must be aware of<br />
any side effects that you are experiencing in order to<br />
help you. Communi<strong>ca</strong>tion is a key word in helping<br />
you achieve the best possible experience as you<br />
undergo chemotherapy.
WHAT IS CHEMOTHERAPY?<br />
Chemotherapy is the use of a drug, or a combination<br />
of drugs, to kill tumour cells, or prevent further<br />
growth. Clini<strong>ca</strong>l trials have proven that different<br />
chemotherapy drugs damage <strong>ca</strong>ncer cells at various<br />
stages of cell division and so a combination of drugs<br />
is more effective. The best chemotherapy is<br />
determined for each patient depending on the type<br />
of <strong>ca</strong>ncer they have, the stage the <strong>ca</strong>ncer is at and<br />
their overall health.<br />
HOW DO I PREPARE FOR CHEMOTHERAPY?<br />
Perhaps the greatest fear we have is that of the<br />
unknown. Cancer <strong>ca</strong>pitalizes on that fear. We enter a<br />
world of hospitals, surgery, medi<strong>ca</strong>tions, taking with<br />
us a body that is fighting fatigue, nausea and pain.<br />
We no longer feel in control of our own bodies –<br />
they have betrayed us. Some of our fears are not easy<br />
to put into words, even with those we trust the most.<br />
But the more questions we ask about treatment, side<br />
effects, and options available, the more we fight<br />
those fears and gain back some control. Patients who<br />
prepare for chemotherapy <strong>by</strong> asking questions about<br />
what they should expect are better able to handle the<br />
physi<strong>ca</strong>l and emotional aspects of treatment. Talk to<br />
others who have been through the experience.<br />
Everyone’s <strong>ca</strong>ncer story is unique to them, but their<br />
stories <strong>ca</strong>n bring hope and encouragement. Don’t be<br />
“People have<br />
individual styles<br />
of learning. Some<br />
learn <strong>by</strong> reading,<br />
some <strong>by</strong> listening<br />
to a tape or<br />
watching TV.<br />
We like to<br />
encourage people,<br />
when they begin<br />
this journey, to<br />
determine how<br />
they learn best,<br />
then we <strong>ca</strong>n direct<br />
them to the resources<br />
they need to learn<br />
the most about<br />
this challenging<br />
situation they<br />
are in.”<br />
KATHY THOMSON<br />
R.N., M.N.<br />
Director, Breast Cancer<br />
Centre of Hope, Winnipeg<br />
DAY BY DAY 15
Improving the<br />
Chemotherapy<br />
Experience<br />
16 DAY BY DAY<br />
afraid to speak to your doctor or nurse about<br />
concerns you have. Set goals for yourself. Techniques<br />
such as meditation, relaxation and prayer <strong>ca</strong>n also<br />
help to reduce anxiety. Most importantly of all, be an<br />
active participant in how you are being <strong>ca</strong>red for.<br />
HOW DO I DEVELOP A CHEMOTHERAPY PLAN?<br />
As you read through this book you will begin to<br />
visualize what lies ahead of you. You will understand<br />
and recognize the side effects that might take place<br />
be<strong>ca</strong>use of the treatment you are undergoing. You<br />
will understand the emotional aspects that you will<br />
have to deal with, and the benefit of making family,<br />
friends and business colleagues aware of the new<br />
needs you will have. Knowing what to expect and<br />
what to plan for, will help decrease the anxiety and<br />
fear that are a natural response to any stressful situation.<br />
Your doctor and oncology nurse will help you<br />
develop a chemotherapy plan which is best for you.<br />
A good plan will contain:<br />
• Timing of treatment<br />
• Type and amount of drug or combination of drugs<br />
• Potential timing of physi<strong>ca</strong>l and emotional side<br />
effects<br />
• Potential obstacles and ways to avoid/overcome<br />
side effects<br />
• Flexible and realistic goals.
HOW LONG DOES CHEMOTHERAPY LAST?<br />
Be<strong>ca</strong>use a single dose of chemotherapy will only<br />
kill a certain percentage of <strong>ca</strong>ncer cells, multiple<br />
doses, or cycles, are necessary to eradi<strong>ca</strong>te all tumour<br />
cells. Chemotherapy is scheduled as frequently as<br />
possible to:<br />
• Minimize tumour growth between cycles<br />
• Prevent the development of resistance to<br />
chemotherapy medi<strong>ca</strong>tions, and<br />
• Achieve the best outcome.<br />
Clini<strong>ca</strong>l trials have determined which schedules kill<br />
the most tumour cells while minimizing side effects.<br />
Postponing chemotherapy, or spacing chemotherapy<br />
cycles farther apart, reduces <strong>ca</strong>ncer-free survival, just<br />
as excessively decreasing the dose does. In addition<br />
to that, disruption of your chemotherapy schedule<br />
<strong>ca</strong>n also <strong>ca</strong>use frustration. Moni<strong>ca</strong>, a breast <strong>ca</strong>ncer<br />
survivor, remembers many times when she would<br />
arrive at the hospital for chemotherapy. “I would go<br />
straight to the blood clinic, give blood, and then<br />
wait, sometimes as long as two-three hours only to<br />
find out that my white blood count was too low and<br />
I couldn’t have the chemo that day. It’s<br />
tremendously exhausting to have mentally prepared<br />
yourself for chemo and arranged the next few days<br />
around how you will feel only to find that it’s been<br />
“All along,<br />
throughout my<br />
chemo, I was<br />
visualizing my<br />
daughter’s first<br />
birthday as a<br />
milestone when my<br />
treatment would<br />
be complete. My<br />
doctor prescribed<br />
Neupogen when my<br />
white blood cell<br />
count began to drop<br />
and it kept my<br />
treatment on track.<br />
If treatment had<br />
been delayed it<br />
would definitely<br />
have affected my<br />
coping skills and<br />
my ability to<br />
maintain a<br />
positive attitude.”<br />
MARILYN<br />
Breast Cancer Patient<br />
postponed be<strong>ca</strong>use your body <strong>ca</strong>n’t handle it. You DAY BY DAY 17
Improving the<br />
Chemotherapy<br />
Experience<br />
“The next<br />
treatment session is<br />
always anxiously<br />
anticipated. If this<br />
has to be <strong>ca</strong>ncelled<br />
it <strong>ca</strong>n be very<br />
distressing and<br />
frustrating for the<br />
patient.”<br />
JEAN REMMER<br />
Social Worker<br />
Hope & Cope, Montreal<br />
18 DAY BY DAY<br />
have to wonder, if it’s so important that I keep on<br />
this regimen, what is going to happen to me if I keep<br />
on delaying the treatment?”<br />
WHY MIGHT MY CHEMOTHERAPY<br />
BE DELAYED OR POSTPONED?<br />
The most common reason for reducing the dose of<br />
chemotherapy or delaying the next cycle is the<br />
development of potentially serious side effects,<br />
particularly neutropenia (nu"tro-pe´ne-ah) – a low<br />
white blood cell count which if left untreated may<br />
result in a life threatening infection (for more<br />
information see page 20). Other reasons for delay of<br />
chemotherapy include severe fatigue and severe<br />
nausea. In many <strong>ca</strong>ses these side effects <strong>ca</strong>n be<br />
managed successfully with medi<strong>ca</strong>tion so that the<br />
chemotherapy schedule is not interrupted.<br />
PREPARE FOR PHYSICAL SIDE EFFECTS<br />
Chemotherapy kills tumour cells <strong>by</strong> interfering with<br />
one or more of the many stages of cell division.<br />
Unfortunately, chemotherapy is not specific to <strong>ca</strong>ncer<br />
cells; it also damages normal cells, especially those<br />
that divide rapidly or frequently, including cells in<br />
hair follicles, bone marrow cells, and cells lining the<br />
mouth and gastrointestinal tract. Be<strong>ca</strong>use of this,<br />
typi<strong>ca</strong>l side effects of chemotherapy include:
Hair loss<br />
For most women this is still the first question – ‘Am I<br />
going to lose my hair?’ Virtually all patients<br />
experience some degree of temporary hair loss,<br />
although it does depend on the drugs used. Even<br />
though hair always grows back, the psychologi<strong>ca</strong>l<br />
impact of hair loss <strong>ca</strong>n be immense. Many patients say<br />
that hair loss is the chemotherapy side effect that they<br />
fear the most. As well as head hair, most people <strong>ca</strong>n<br />
expect to lose eyebrows, eyelashes, pubic and<br />
underarm hair. Both men and women should consider<br />
purchasing a wig, s<strong>ca</strong>rves or hats, and cutting their<br />
hair very short or even shaving their heads when<br />
chemotherapy begins. Look into the “Look Good....<br />
Feel Better” program which is available at all <strong>ca</strong>ncer<br />
hospitals across Canada. (www.lgfb.<strong>ca</strong>)<br />
Nausea<br />
If nausea or vomiting occurs it will be on the day of,<br />
and possibly for one or two days after, chemotherapy.<br />
Fortunately, effective antinauseants such as stemetil,<br />
ondansetron and granisetron, which <strong>ca</strong>n completely<br />
prevent or signifi<strong>ca</strong>ntly reduce these symptoms, <strong>ca</strong>n<br />
be given before and after chemotherapy.<br />
Fatigue<br />
A common side effect of chemotherapy, fatigue <strong>ca</strong>n<br />
be brought on <strong>by</strong> the stress of adjusting to a <strong>ca</strong>ncer<br />
“Drugs like<br />
ondansetron have<br />
really revolutionized<br />
chemotherapy.<br />
I was only physi<strong>ca</strong>lly<br />
sick twice and<br />
I had twelve<br />
treatments. Also<br />
my white count<br />
held up very well<br />
and I didn’t have<br />
to start taking<br />
Neupogen until<br />
about treatment<br />
number five or six.<br />
My last<br />
chemotherapy<br />
appointment was<br />
three years ago,<br />
and I’m in the<br />
clear.”<br />
ANDREW<br />
Hodgkin’s Patient<br />
diagnosis, reduced red blood counts, and the effects DAY BY DAY 19
Improving the<br />
Chemotherapy<br />
Experience<br />
20 DAY BY DAY<br />
of the chemotherapy drugs themselves. Make sure<br />
you get enough sleep, eat well, and minimize stress at<br />
home and on the job. Relaxation therapies <strong>ca</strong>n be<br />
very useful.<br />
Mouth sores<br />
These are common and usually occur several days<br />
after chemotherapy starts. Before beginning<br />
chemotherapy, have a dental check-up and cleaning<br />
and when chemo begins start rinsing with mild<br />
mouth-washes that contain no alcohol. Use a soft<br />
toothbrush and eat soft foods.<br />
Diarrhea<br />
Although common, diarrhea is generally not severe or<br />
long lasting and <strong>ca</strong>n usually be managed with<br />
nonprescription antidiarrheal agents. If it lasts for more<br />
than three days after your treatment you may need<br />
medi<strong>ca</strong>tion and you may have to go to the hospital.<br />
Neutropenia<br />
Neutropenia, a low white blood cell count, is the most<br />
serious common toxicity of chemotherapy.<br />
Unlike other physi<strong>ca</strong>l side effects of chemotherapy,<br />
neutropenia has silent symptoms, which, if left<br />
untreated, <strong>ca</strong>n have a serious outcome. Be<strong>ca</strong>use white<br />
blood cells play a very important role in fighting<br />
infection, a low white count may predispose you to<br />
developing serious or even life-threatening infections.
Be<strong>ca</strong>use of this, white blood cell counts are closely<br />
monitored during treatment. On the day that you are<br />
scheduled to receive your next cycle of therapy, your<br />
white count will be measured to ensure that you are<br />
able to receive the next course of chemotherapy. Many<br />
patients receiving chemotherapy develop neutropenia,<br />
but the degree to which it is experienced <strong>ca</strong>nnot be<br />
predicted. Patients who experience neutropenia, but<br />
whose white blood cell counts rapidly return to normal,<br />
require no treatment. If however, your counts have not<br />
returned to normal, it is unlikely that you will be able<br />
to receive your next cycle of chemotherapy on<br />
schedule. One way to speed up the recovery of your<br />
white blood cell count is to use a group of drugs <strong>ca</strong>lled<br />
growth factors, Neupogen ® (filgrastim) and Neulasta ®<br />
(pegfilgrastim) help to decrease the duration and<br />
severity of neutropenia, preventing chemotherapy dose<br />
reductions and delays and decreases the likelihood of<br />
serious infections. Once a physician prescribes<br />
Neupogen or Neulasta it is likely that you will continue<br />
using it throughout your remaining cycles of<br />
chemotherapy. As a patient, it is important to recognize<br />
possible symptoms of infection; if you experience a<br />
fever (over 38°C), or flu-like symptoms contact your<br />
doctor immediately. In this situation, admittance to<br />
hospital and antibiotic treatment may be required.<br />
“I generally explain<br />
to my patients how<br />
crucial it is to keep<br />
to the full dosage<br />
and timing of their<br />
chemotherapy.<br />
I arrange for them<br />
to have their blood<br />
work done one or<br />
two days before<br />
chemotherapy is due<br />
and have the results<br />
faxed to me. If the<br />
white count is low<br />
and they don’t<br />
want to delay or<br />
reduce their dose<br />
we recommend<br />
Neupogen. The<br />
higher the risk of<br />
recurrence the more<br />
important it is for<br />
them to get their<br />
full dose on time.”<br />
DR. STEFAN GLÜCK<br />
MD, PH.D<br />
Medi<strong>ca</strong>l Oncologist and<br />
Associate Professor<br />
Tom Baker Cancer Centre<br />
University of Calgary<br />
DAY BY DAY 21
Improving the<br />
Chemotherapy<br />
Experience<br />
“I was diagnosed<br />
with Hodgkin’s<br />
disease when I was<br />
21. At that point I<br />
was pretty shocked...<br />
I <strong>ca</strong>n’t tell you how<br />
great my oncologist,<br />
Kevin Imrie, was.<br />
He gave me all the<br />
time I needed; he<br />
gave me the feeling<br />
that they had cured<br />
people like me<br />
before. He was<br />
really straight with<br />
me and that helped<br />
<strong>ca</strong>lm me.”<br />
ANDREW<br />
Hodgkin’s Patient<br />
22 DAY BY DAY<br />
Anemia<br />
If you have <strong>ca</strong>ncer, you may just think that feeling<br />
tired is part of the disease. However, feeling unusually<br />
tired may be due to anemia, a common side effect of<br />
many chemotherapy regimens. Anemia occurs when<br />
there is a signifi<strong>ca</strong>nt decrease in your red blood cell<br />
(RBC) levels. Be<strong>ca</strong>use it is the hemoglobin in your<br />
RBCs that <strong>ca</strong>rries oxygen throughout your body, a fall<br />
in these oxygen-rich cells <strong>ca</strong>n <strong>ca</strong>use your energy level<br />
to drop. More than half of all <strong>ca</strong>ncer patients will be<br />
anemic, regardless of the therapy received, and<br />
approximately 1 in 5 of all patients undergoing<br />
chemotherapy may require red blood cell transfusions.<br />
Although it is not life-threatening, many patients<br />
report that fatigue has a negative impact on their dayto-day<br />
activities. Your doctor will check your blood<br />
count often during treatment. If your red blood count<br />
falls below normal levels you may need erythropoietin<br />
to help increase the number of red blood cells in your<br />
body and help prevent the need for blood transfusion.<br />
Thrombocytopenia<br />
This is a less common side effect of chemotherapy.<br />
Platelets play a role in preventing bleeding, and thrombocytopenia<br />
(throm"bo-si"to-pe´ne-ah) – a decreased<br />
platelet count – may result in a severe drop in the count<br />
which results in prolonged or excessive bleeding from<br />
cuts. A platelet transfusion may be required.
HOW DO I HELP PREPARE MY FAMILY<br />
AND FRIENDS?<br />
The results of a study published in 1998 (Keller M,<br />
et al. Psychotherapy Psychosomatic Med Psychol.)<br />
revealed that distress levels in spouses were as high as<br />
those in patients. Cancer is a family affair. As with<br />
any life-threatening illness it affects all those with<br />
whom it comes in contact. Just as you have to create<br />
a ‘new normal’ for yourself, so do family members<br />
and friends as they try to come alongside to help you<br />
win this battle. In her book Side <strong>by</strong> Side, Moni<strong>ca</strong><br />
refers to this battle as a ‘deadly duel’. In every duel<br />
there are ‘seconds’ ready to support the principal<br />
players and you need to make sure that your support<br />
team is there for you. Have family members, friends,<br />
and close business associates read the Side <strong>by</strong> Side<br />
section in this book so that they <strong>ca</strong>n learn how to<br />
effectively help you fight the battle of your life.<br />
HOW DO I PREPARE MY EMPLOYER?<br />
One of the questions you need to ask your medi<strong>ca</strong>l<br />
professional is whether you will be able to continue<br />
working (see page 34). Find out what policies your<br />
company has regarding sick leave, disability,<br />
prescription plan etc. Many companies now allow<br />
employees to work from home several days of the<br />
week. Find out whether you <strong>ca</strong>n set up a schedule<br />
that will be flexible in terms of what you will require<br />
DAY BY DAY 23
Improving the<br />
Chemotherapy<br />
Experience<br />
“People’s belief of<br />
how they will feel<br />
when undergoing<br />
chemotherapy may<br />
be based on what<br />
they’ve seen or<br />
understood from<br />
other people’s<br />
experience – but<br />
that will not<br />
necessarily be their<br />
experience. In the<br />
last ten to fifteen<br />
years there have<br />
been a lot of new<br />
medi<strong>ca</strong>tions and<br />
new treatments for<br />
side effects. We are<br />
controlling them<br />
very well.”<br />
BARBARA JOUDREY<br />
R.N., CON(C)<br />
Nurse Coordinator<br />
In-Patient Unit<br />
Moncton Hospital<br />
24 DAY BY DAY<br />
as you undergo treatment. If you feel that your<br />
company is not treating you fairly, talk to your<br />
medi<strong>ca</strong>l team to see whether they have any<br />
suggestions for resolving the situation.<br />
WHAT ADVANCES HAVE TAKEN PLACE<br />
IN CHEMOTHERAPY?<br />
Cancer <strong>ca</strong>re, <strong>ca</strong>ncer therapies and supportive <strong>ca</strong>re<br />
medi<strong>ca</strong>tions are continually under review as clini<strong>ca</strong>l<br />
trials of new chemotherapy combinations are<br />
conducted and found to be effective. Along with a<br />
greater effectiveness have come increased survival<br />
rates, better tolerated treatments for the patient and<br />
improved supportive <strong>ca</strong>re and pain control. The<br />
chemotherapy treatment that you will receive will be<br />
different from that prescribed twelve years ago.<br />
Discuss treatment options with your physician and be<br />
pro-active about asking for information on clini<strong>ca</strong>l<br />
trials and newer treatments that may be available.<br />
Discuss medi<strong>ca</strong>tions that will help to alleviate<br />
common side effects, and the use of medi<strong>ca</strong>tions to<br />
help avoid having to delay chemotherapy.<br />
UNDERSTANDING THE EMOTIONAL IMPACT<br />
Your needs and concerns in terms of emotional and<br />
spiritual issues will shift depending on many factors:<br />
the stage you are at in your treatment; the beliefs<br />
that you hold about <strong>ca</strong>ncer; how the news has been<br />
delivered to you <strong>by</strong> your physician; the support you
are receiving from your health <strong>ca</strong>re team and from<br />
family and friends. There is a very difficult emotional<br />
shift that has to be made if you are undergoing<br />
palliative <strong>ca</strong>re – treatment designed to prolong your<br />
life and make it as comfortable as possible – as<br />
opposed to active treatment. The goals for you and<br />
your health <strong>ca</strong>re team, however, should remain the<br />
same: to communi<strong>ca</strong>te with your health <strong>ca</strong>re team<br />
how you are feeling so they <strong>ca</strong>n help you work your<br />
way through the symptoms, both physi<strong>ca</strong>l and<br />
emotional. Depression <strong>ca</strong>n be a fairly common side<br />
effect of serious illness and <strong>ca</strong>n be treated. Having<br />
faith and trust in the health team you are working<br />
with is an essential ingredient, and <strong>ca</strong>n help give you<br />
peace of mind that everything possible is being done.<br />
Dr. Alam, Medi<strong>ca</strong>l Oncologist at the Windsor<br />
Regional Cancer Centre, feels strongly that the<br />
physician, nurse and the rest of the support team<br />
needs to have a rapport with the patient and equally<br />
the patient needs to have confidence in the team. If<br />
that is not there she believes it may be a good idea to<br />
look for an alternative team. “It’s a criti<strong>ca</strong>l point. You<br />
may not like the physician or the nurse, but if you<br />
trust them then likeability itself may not be an issue.<br />
If the patient doesn’t have that faith, that trust, it<br />
makes it very difficult as they will question everything.”<br />
Dr. Gary Rodin, Head of the Psychosocial Oncology<br />
“I think medicine<br />
has sometimes<br />
been so focused on<br />
treating the disease<br />
that we have<br />
forgotten that there<br />
is a person attached<br />
to that disease, and<br />
a family attached<br />
to them. We have to<br />
treat the whole<br />
person.”<br />
DR. GARY RODIN<br />
Head, Psychosocial Oncology<br />
Program, Princess Margaret<br />
Hospital<br />
DAY BY DAY 25
Improving the<br />
Chemotherapy<br />
Experience<br />
“Patients should be<br />
prepared for the<br />
fact that after<br />
treatment is<br />
finished and they<br />
are disease free<br />
there <strong>ca</strong>n be a<br />
feeling of ‘let<br />
down’. After being<br />
used to having a<br />
team of people<br />
surrounding you,<br />
you <strong>ca</strong>n feel as if<br />
you are suddenly<br />
on your own. There<br />
are some centres<br />
that have services<br />
such as support<br />
groups that will<br />
help you through<br />
what may prove to<br />
be a difficult<br />
time.”<br />
DR. STEFAN GLÜCK<br />
MD, PH.D<br />
Medi<strong>ca</strong>l Oncologist and<br />
Associate Professor<br />
Tom Baker Cancer Centre<br />
University of Calgary<br />
26 DAY BY DAY<br />
Program at Princess Margaret Hospital, emphasizes<br />
how important support is in helping to relieve much<br />
of the emotional stress which will inevitably be<br />
experienced. “By support, I don’t just mean support<br />
in terms of family and friends, but support in the<br />
medi<strong>ca</strong>l context. That support has a great deal to do<br />
with the way in which the diagnosis is first<br />
communi<strong>ca</strong>ted and then the support which is<br />
provided afterwards. People often have a lot of<br />
unrealistic fears.”<br />
Joining a support group <strong>ca</strong>n be a way of sharing your<br />
fears and concerns. A member of your health team<br />
will be able to assist you in either joining a group or<br />
working one-on-one to help with some of the<br />
emotional distress you may experience. This kind of<br />
support helps you to feel less overwhelmed and<br />
provides you with a supportive environment as you<br />
are helped to process your feelings. Peer support<br />
groups <strong>ca</strong>n also be extremely helpful in processing<br />
feelings and helping you to feel less isolated.<br />
A serious illness, such as <strong>ca</strong>ncer, disrupts your usual<br />
ways of coping and makes most people feel extremely<br />
vulnerable. Be<strong>ca</strong>use active coping skills are taken<br />
away, it’s important to work with your team to<br />
develop strategies that will give you back some<br />
control.
Questions<br />
&<br />
Answers
Questions<br />
&<br />
Answers<br />
28 DAY BY DAY<br />
The amount of information that you suddenly<br />
have to acquire when you are told your diagnosis <strong>ca</strong>n<br />
be overwhelming. Add to that the stress that you are<br />
experiencing and it is no wonder that many <strong>ca</strong>ncer<br />
patients just turn off, and are initially unable to make<br />
sense of the medi<strong>ca</strong>l terminology and options that<br />
make up a new language that they have to come to<br />
terms with. Taking a close friend or relative with you<br />
to your appointment is one way of making sure that<br />
you come away with a better understanding of what<br />
was said. Another is to have your own list of<br />
questions that are important to you written out, with<br />
room to write down the answers. Never be afraid to<br />
ask questions of your health<strong>ca</strong>re professional. The<br />
more knowledgeable and involved you are with your<br />
treatment, the better equipped you are to work with<br />
your doctors to reach a successful outcome.
What type of <strong>ca</strong>ncer do I have and what type of<br />
treatment are you recommending? Why?<br />
What is the long term goal of my treatment?<br />
How successful is this treatment?<br />
“I was handed<br />
reams of tightly<br />
printed material<br />
about the potential<br />
side effects of the<br />
drugs I was going<br />
to receive on the<br />
test program and<br />
asked to sign off.<br />
You think, ‘I’m<br />
going to look like a<br />
fool if I ask<br />
something be<strong>ca</strong>use<br />
it’s probably<br />
written down here<br />
somewhere’, but<br />
don’t ever be<br />
afraid to ask<br />
questions.”<br />
MONICA<br />
Breast Cancer Patient<br />
DAY BY DAY 29
Questions<br />
&<br />
Answers<br />
30 DAY BY DAY<br />
Are there any ongoing clini<strong>ca</strong>l trials that I may want<br />
to participate in?<br />
How will my chemotherapy be given?<br />
How often?
Who will give it to me, and where?<br />
Who should I <strong>ca</strong>ll if I have questions?<br />
What are the long- and short-term risks<br />
of treatment?<br />
Ask your physician<br />
about taking part<br />
in a clini<strong>ca</strong>l trial.<br />
Whether or not<br />
you participate is<br />
your choice and<br />
all patients are<br />
assured of<br />
receiving the<br />
best available<br />
treatment.<br />
DAY BY DAY 31
Questions<br />
&<br />
Answers<br />
“I think keeping<br />
a diary of how you<br />
are feeling on<br />
your medi<strong>ca</strong>tion is<br />
very useful.<br />
We need the patient<br />
to be able to tell us<br />
what is happening<br />
to them so that<br />
we <strong>ca</strong>n prescribe<br />
medi<strong>ca</strong>tion that<br />
will help them with<br />
side effects if this<br />
is necessary.”<br />
DR. YASMIN ALAM<br />
FRCP(C)<br />
Medi<strong>ca</strong>l Oncologist, Windsor<br />
Regional Cancer Centre<br />
32 DAY BY DAY<br />
How soon will side effects start?<br />
How long will they last?<br />
Are there symptoms that I should <strong>ca</strong>ll you about<br />
right away?
Who should I <strong>ca</strong>ll?<br />
Why may my chemotherapy be delayed or reduced?<br />
What <strong>ca</strong>n be done to make sure this does<br />
not happen?<br />
“What does it<br />
mean to be part of<br />
a clini<strong>ca</strong>l trial?<br />
Have I made the<br />
right decision?<br />
How am I going<br />
to feel physi<strong>ca</strong>lly?<br />
Will the nausea<br />
be as bad as<br />
I anticipate?<br />
We have to help<br />
people work<br />
through basic<br />
questions in order<br />
that they feel more<br />
in control again.”<br />
JEAN REMMER<br />
Social Worker<br />
Hope & Cope, Montreal<br />
DAY BY DAY 33
Questions<br />
&<br />
Answers<br />
“More than onethird<br />
of patients<br />
say they experience<br />
depression/<br />
emotional stress.<br />
Your health team<br />
must know you are<br />
having problems in<br />
order to be able to<br />
help you. Patients<br />
must communi<strong>ca</strong>te<br />
these needs and not<br />
feel that they have<br />
to ‘soldier on’.”<br />
KATHY THOMSON<br />
R.N., M.N.<br />
Director, Breast Cancer<br />
Centre of Hope, Winnipeg<br />
34 DAY BY DAY<br />
Will I need to be in the hospital? Why?<br />
What resources are available if I feel emotionally<br />
troubled?<br />
Can I keep working?
Side <strong>by</strong> Side
Side <strong>by</strong> Side<br />
36 DAY BY DAY<br />
MONICA’S STORY<br />
When Moni<strong>ca</strong> took her first, unplanned steps<br />
along a route which <strong>ca</strong>rried a roadsign labelled<br />
‘Cancer’, she had no idea of the many friends and<br />
business associates who would ultimately choose to<br />
take parts of that journey with her.<br />
Like most survivors of a life-threatening illness, her<br />
story is the stuff of which major motion pictures are<br />
made. A single mother with two young children, she<br />
also ran a very successful public relations company.<br />
Her life was a parody of the character played <strong>by</strong><br />
Goldie Hawn in the movie Overboard, where she says<br />
“Everyone wants to be me”. But not many people<br />
wanted to be Moni<strong>ca</strong> on December 9, 1988 when<br />
she was told, at the age of 35, that she had breast<br />
<strong>ca</strong>ncer.<br />
From then on Moni<strong>ca</strong>’s life took on a pattern of its<br />
own that had very little to do with how successful<br />
she was in business; took no account of edu<strong>ca</strong>tion,<br />
background, or money. She be<strong>ca</strong>me a statistic: a<br />
hospital gowned figure who looked identi<strong>ca</strong>l to all<br />
the other patients who were attempting to cope not<br />
only with surgery, chemotherapy and radiation<br />
treatments, but also trying to come to terms with the<br />
fact that their lives had changed, probably for ever.
What are the coping mechanisms that spring into<br />
place? Initial denial, before surrendering to the<br />
overwhelming realization that this isn’t going to go<br />
away; turning to friends and family for emotional<br />
support; humour – although oftentimes this <strong>ca</strong>n only<br />
take place with other survivors who have earned the<br />
right to joke; strong religious faith; positive thinking<br />
– all these have their place and Moni<strong>ca</strong> found herself<br />
using them all. But one very signifi<strong>ca</strong>nt event<br />
occurred in the early days of her illness that had an<br />
overwhelming impact on how she was ultimately able<br />
to get her life back on track.<br />
A business associate who was well aware of what was<br />
ahead, took the time to put together a ‘team’; people<br />
who knew Moni<strong>ca</strong>, and challenged each of them to<br />
commit to doing something on a regular basis that<br />
would enable her to devote her energy to the healing<br />
process. Moni<strong>ca</strong> credits this associate – whom she<br />
<strong>ca</strong>lls ‘The Coach’ – as being a key ingredient in her<br />
ability to have some normality in her life in spite of<br />
everything she was undergoing.<br />
Working side <strong>by</strong> side with Moni<strong>ca</strong>, her Coach was<br />
able to make sure that her basic needs were met <strong>by</strong><br />
putting together a team of people, all of whom were<br />
prepared to commit to doing something on a regular<br />
basis.<br />
“Being an independent mother made it easier for<br />
“We have over 500<br />
resources in our<br />
library, but we also<br />
have a small pack<br />
of ‘have to have’<br />
resources that we<br />
give people when<br />
they are newly<br />
diagnosed. Side <strong>by</strong><br />
Side is one of the<br />
‘have to have’.<br />
It is probably the<br />
most practi<strong>ca</strong>l<br />
resource that we<br />
<strong>ca</strong>n give patients<br />
on how to work<br />
their way through<br />
living with <strong>ca</strong>ncer.”<br />
KATHY THOMSON<br />
R.N., M.N.<br />
Director, Breast Cancer<br />
Centre of Hope, Winnipeg<br />
DAY BY DAY 37
Side <strong>by</strong> Side<br />
“I think that in<br />
this day and age<br />
most people want to<br />
know how to get the<br />
most information<br />
about their <strong>ca</strong>ncer,<br />
their prognosis and<br />
the stage they are<br />
at. That knowledge,<br />
that information,<br />
helps to empower<br />
them.”<br />
DR. YASMIN ALAM<br />
FRCP(C)<br />
Medi<strong>ca</strong>l Oncologist, Windsor<br />
Regional Cancer Centre<br />
38 DAY BY DAY<br />
friends and family to help. My needs were blatant<br />
and there was obviously no husband to help. Too<br />
often though, we think people are <strong>ca</strong>red for when<br />
they’re not. Life needs to continue as normally as<br />
possible, so extra hands from outside the home allow<br />
the homelife itself to continue.”<br />
Over 12 years have passed since Moni<strong>ca</strong> underwent<br />
surgery. Cancer took away her business and her<br />
lifestyle as she knew it. It made huge inroads on the<br />
energy she took for granted; it brought pain and fear.<br />
But for a woman who prided herself on her<br />
independence and her ability to cope with everything<br />
life threw at her, it brought something else: the<br />
realisation that there are times when you <strong>ca</strong>n’t do it<br />
all; you <strong>ca</strong>n’t cope; you <strong>ca</strong>n barely hang in. What she<br />
experienced through someone systemati<strong>ca</strong>lly putting<br />
a support system in place for her is what she shares in<br />
her book Side <strong>by</strong> Side. This ‘team’ approach goes far<br />
beyond merely sending flowers to the hospital or<br />
dropping off a meal when a friend returns home<br />
from surgery. It answers the question we all have<br />
when someone we know is seriously ill – “What <strong>ca</strong>n I<br />
do?” and gives specific guidelines on how to<br />
practi<strong>ca</strong>lly and lovingly discern their needs and meet<br />
them.<br />
BARBARA J. MURRAY<br />
EDITOR
THE CHALLENGE<br />
In Arthur Frank’s book, At the Will of the Body, he<br />
makes the comment that anybody who wants to be a<br />
<strong>ca</strong>regiver must not only have real support to offer<br />
but must also learn to convince the ill person that<br />
this support is there. The support I received through<br />
my Coach and Team was overwhelming. It gave me<br />
encouragement at my lowest points; it enabled me to<br />
still treasure my uniqueness as a human being while<br />
coping with the indignities of a body which was<br />
suffering from the aftermath of surgery,<br />
chemotherapy and radiation. Most importantly, it<br />
didn’t fail.<br />
To discover that you have a life-threatening illness is<br />
devastating. I could not have put together a team of<br />
people to help meet my needs, but someone who was<br />
a true <strong>ca</strong>regiver did that for me. I needed help at a<br />
time when I was vulnerable in a way I had never<br />
before experienced – and that help was <strong>ca</strong>refully<br />
orchestrated and organized to meet each need as it<br />
arose.<br />
This is not about how I survived <strong>ca</strong>ncer, it’s about<br />
how you <strong>ca</strong>n help someone survive. It’s not just my<br />
story, it’s the story of one person being committed to<br />
help, and the many people who helped him fulfil that<br />
commitment. It could be your story.<br />
MONICA WRIGHT-ROBERTS<br />
DAY BY DAY 39
Side <strong>by</strong> Side<br />
“Cancer is a<br />
traumatic event<br />
for everybody.<br />
You don’t have<br />
to be especially<br />
vulnerable, and<br />
that kind of<br />
normalizing of<br />
this situation<br />
makes it easier for<br />
people to receive the<br />
help and support<br />
they need.”<br />
DR. GARY RODIN<br />
Head, Psychosocial Oncology<br />
Program, Princess Margaret<br />
Hospital<br />
40 DAY BY DAY<br />
WHAT CAN IDO?<br />
You’ve just received the news that a friend has been<br />
diagnosed with <strong>ca</strong>ncer and your heart drops. You feel<br />
the immediate need to do something – but what?<br />
The question most frequently asked <strong>by</strong> friends and<br />
family when someone is ill or in the midst of<br />
treatment – and the one most difficult to answer – is<br />
‘What <strong>ca</strong>n I do?’ Many people are too embarrassed to<br />
suggest an idea in <strong>ca</strong>se it’s inconvenient, let alone<br />
face the fact that they’ve gone from being a normal,<br />
<strong>ca</strong>pable person to someone whom people now feel<br />
sorry for.<br />
If you’re a family member you should know the<br />
patient well enough to be sensitive as to the areas in<br />
which they will need help, and hopefully are close<br />
enough to them to offer both emotional and<br />
financial support if this is needed.<br />
Wanting to become involved is great; putting the<br />
onus of deciding what that involvement should be on<br />
someone who is already trying to cope with their<br />
sickness is unrealistic.<br />
If you are a <strong>ca</strong>sual acquaintance – a neighbour or<br />
business associate – then you need to ask yourself<br />
what you are <strong>ca</strong>pable of doing.
Ask yourself the following questions:<br />
How much time <strong>ca</strong>n I give without it <strong>ca</strong>using a<br />
major disruption in my schedule?<br />
What am I good at? Are there practi<strong>ca</strong>l skills<br />
that I have that this person needs?<br />
Do I live near<strong>by</strong>? Don’t let distance stop you from<br />
becoming involved; taking out a gift subscription<br />
to a magazine; sending <strong>ca</strong>rds on a regular basis;<br />
arranging for the lo<strong>ca</strong>l pizza shop to deliver once<br />
a month (charged to your credit <strong>ca</strong>rd), or<br />
sending flowers, are just a few of the things that<br />
<strong>ca</strong>n be arranged no matter how far away you<br />
live.<br />
DAY BY DAY 41
Side <strong>by</strong> Side<br />
42 DAY BY DAY<br />
Are our lifestyles similar?<br />
Do we have any similar tastes? (In books, movies,<br />
music, food, hobbies.)<br />
Who else might want to help? (Are there other<br />
people who should know who would want to do<br />
something?)
Remember, the illness and subsequent treatment<br />
might continue over a long period – months or even<br />
years.<br />
As you look at your own lifestyle and compare it with<br />
your friend’s you will probably find several points of<br />
similarity.<br />
You both have children who are involved in Little<br />
League? Then offer to pick up and drop off the kids.<br />
You live next door? How about mowing their lawn<br />
along with yours?<br />
You always bump into each other at the lo<strong>ca</strong>l video<br />
store on a Friday night? Make a note of the movies<br />
they are interested in and pick one up each time you<br />
pick up yours, and drop it off.<br />
The key is to find ways to make their lifestyle as<br />
normal as possible without it becoming a burden<br />
for you. If it’s too time consuming you won’t be<br />
able to keep it up.<br />
To sum up – ask yourself what you <strong>ca</strong>n do; make<br />
some suggestions and let this be a starting point to<br />
discovering their real needs.<br />
“Cancer made it<br />
acceptable for me to<br />
turn and get help.<br />
That’s one of the<br />
privileges of the<br />
illness. Definitely<br />
the support I<br />
received from the<br />
team of people<br />
that my business<br />
associate put<br />
together for me,<br />
and from my<br />
family doctor<br />
and psychiatrist,<br />
emotionally got<br />
me through when<br />
I was at my very<br />
lowest point.”<br />
MONICA<br />
Breast Cancer Patient<br />
DAY BY DAY 43
Side <strong>by</strong> Side<br />
44 DAY BY DAY<br />
THE COACH<br />
Whenever I tell my story it quickly becomes obvious<br />
that without ‘The Coach’ the support I received<br />
from friends and business associates could well have<br />
started to collapse at a point where it was still very<br />
necessary to me.<br />
If you’ve asked yourself the question ‘What <strong>ca</strong>n I<br />
do?’ this could be the role that you are prepared to<br />
take on, or you may at least have a good idea of who<br />
would be suited to it. It’s a role that is criti<strong>ca</strong>l to the<br />
success of putting together a team that will continue<br />
to offer support for as long as the person undergoing<br />
medi<strong>ca</strong>l treatment requires it.<br />
How do you define the Coach? He or she is a<br />
member of the support team who is responsible for<br />
coordinating the needs of the patient with the<br />
talents of the team members. He’s responsible for<br />
encouraging the team to continue, and to adapt<br />
to the changing needs of the patient.<br />
Should the Coach be a spouse or parent? This <strong>ca</strong>n be<br />
a difficult role to handle for a close family member.<br />
As a husband or wife it <strong>ca</strong>n be hard, if not<br />
impossible, to confront people and tell them they are<br />
not delivering on their promises. Also close family<br />
members have their own emotional needs, high and<br />
low points, and the stress of organizing and running<br />
a team is probably not a good idea.
The Coach does not have to know all of the team<br />
members personally, but does need to know who<br />
wants to become involved and what their level of<br />
involvement will be.<br />
It is important that the Coach be someone that<br />
the patient <strong>ca</strong>n talk to, convey needs to, and feel<br />
comfortable discussing their illness with.<br />
My Coach hosted a lunch at which he discussed my<br />
<strong>ca</strong>ncer and its impli<strong>ca</strong>tions. He challenged everyone<br />
to share what they would do to help. You might feel<br />
more comfortable contacting people on a one-on-one<br />
basis. If you have some common interests such as a<br />
club, church group, or other organization, you might<br />
want to present this as a <strong>ca</strong>re-project. No one person<br />
<strong>ca</strong>n contact everyone and undoubtedly as well as the<br />
‘official’ team there will be many people who, on an<br />
oc<strong>ca</strong>sional basis, will do things like send flowers, make<br />
dinner reservations, pick up the kids, etc.<br />
What the Coach needs to ensure with the team is<br />
that basic needs are being met.<br />
Needs of course are individual: a single mother<br />
undergoing <strong>ca</strong>ncer treatment has different needs<br />
from those of a retired businessman with a wife and<br />
grown children.<br />
Sometimes needs are not apparent in the first stages<br />
of illness. I found that something as simple as doing<br />
laundry be<strong>ca</strong>me impossible during chemotherapy – I<br />
“We have to be<br />
flexible in<br />
responding to the<br />
myriad of feelings<br />
and changing needs<br />
that <strong>ca</strong>ncer patients<br />
experience.”<br />
JEAN REMMER<br />
Social Worker<br />
Hope & Cope, Montreal<br />
DAY BY DAY 45
Side <strong>by</strong> Side<br />
“There are times<br />
in life when we<br />
recognize we <strong>ca</strong>n’t<br />
go it alone.<br />
To see our lives<br />
within a larger<br />
cosmic reality is to<br />
open ourselves to<br />
forces beyond<br />
medi<strong>ca</strong>l ingenuity<br />
and our own<br />
personal ability.<br />
The marvellous<br />
resource of prayer<br />
is that medium <strong>by</strong><br />
which we connect to<br />
the source of our<br />
creation, and the<br />
chorus of prayer<br />
that comes from<br />
countless friends<br />
assures me that<br />
I am not walking<br />
this path alone.”<br />
BRIAN C. STILLER<br />
President<br />
Tyndale College & Seminary<br />
46 DAY BY DAY<br />
was not able to use my arm to lift the wet clothes out<br />
of the washing machine and into the dryer. It’s<br />
important that the Coach be someone who continues<br />
to be sensitive to changing needs.<br />
To be an effective Coach you need to:<br />
Be a good organizer.<br />
Take time to follow up with each team member.<br />
Be outgoing. This is not the job for an introvert!<br />
Be able to cope with facing someone who is going<br />
to look very sick at times.
THE TEAM<br />
My team was made up of people who knew me from<br />
many different areas of my life: business associates;<br />
parents of my children’s friends; family members;<br />
church friends; and the <strong>ca</strong>sual acquaintances that we<br />
all make as we go through our normal daily routine.<br />
Most people want to help; most people want to do<br />
something. It’s defining that ‘something’ that is so<br />
difficult.<br />
Team members are the legs to run around, the<br />
arms to help, the minds to think, the hearts to<br />
<strong>ca</strong>re, the mouths to read, the eyes to watch, the<br />
ears to hear and the bodies to be close to.<br />
The team member is the person who wants to help in<br />
some way – whether big or small – and do it<br />
consistently over an extended period of time.<br />
One of my team members regularly treated me to a<br />
formal English Afternoon Tea at a near<strong>by</strong> hotel.<br />
Another close friend moved in every other weekend<br />
to give me company and help give support while I<br />
was going through chemotherapy. A business<br />
associate in the music industry sent concert tickets to<br />
my children; while another friend made up their<br />
school lunchboxes – for an entire year. People did<br />
what they did best; what they could commit to; what<br />
they felt comfortable doing.<br />
DAY BY DAY 47
Side <strong>by</strong> Side<br />
“Side <strong>by</strong> Side is a<br />
useful tool for<br />
patients with<br />
<strong>ca</strong>ncer. It gives a<br />
personal touch; it’s<br />
practi<strong>ca</strong>l and<br />
encouraging and<br />
written <strong>by</strong> someone<br />
who’s ‘been there’.<br />
Friends and<br />
family love this<br />
book as it gives<br />
them a host of<br />
practi<strong>ca</strong>l and<br />
useful suggestions<br />
that they <strong>ca</strong>n do to<br />
help – without<br />
getting in the way<br />
of the patient or the<br />
medi<strong>ca</strong>l team.”<br />
DR. YASMIN ALAM<br />
FRCP(C)<br />
Medi<strong>ca</strong>l Oncologist, Windsor<br />
Regional Cancer Centre<br />
48 DAY BY DAY<br />
Not all of the team members knew each other. In<br />
some instances even I did not know who was<br />
responsible for some of the gifts I received. People<br />
found their own way of showing love and concern.<br />
In Judy Hart’s book – Love Judy – she talks about the<br />
time she switched on her answering machine only to<br />
find that someone had left a barber shop quartet for<br />
her! I too found that many of my friends were very<br />
creative in the things they planned for me.<br />
Team members find the perfect role <strong>by</strong> assessing<br />
their talents and interests, available time and<br />
energy, and marrying that to the areas that suit<br />
the patient.
Remember:<br />
• Make it easy for someone to accept help from you;<br />
don’t act like a martyr letting everyone around you<br />
know just how much you’re doing for ‘poor soand-so’.<br />
Help preserve their self respect.<br />
• Give people space. Just be<strong>ca</strong>use you’ve offered<br />
your help doesn’t mean you have the right to know<br />
everything about their life.<br />
• Respect their privacy. If you’ve left message after<br />
message on their voice mail or e-mail asking how<br />
they’re doing and they haven’t got back to you,<br />
accept the fact that they are obviously not up to<br />
talking at the moment. Maybe it’s taking all of<br />
their strength just to make it to the hospital for<br />
their chemo.<br />
• Continue doing what you <strong>ca</strong>n do, and let them<br />
battle with the things they have to battle with.<br />
DAY BY DAY 49
Side <strong>by</strong> Side<br />
50 DAY BY DAY<br />
PLAYERS’ ROLES<br />
You’ve been asked <strong>by</strong> the Coach to join the team.<br />
You’ve got the chance to be a player and to make a<br />
real difference in the quality of someone’s life. Their<br />
experience of <strong>ca</strong>ncer could be affected <strong>by</strong> how well<br />
you play your role. So now the ball’s in your court –<br />
what areas are there for the players?<br />
The following list of ideas include many that I found<br />
especially helpful. As you work through this section<br />
you’ll find that the suggestions will help to trigger<br />
ideas that will be most effective – and welcome – in<br />
your situation and for the person you are committed<br />
to helping.<br />
Be creative! Everyone has their own familiar lifestyle<br />
patterns. Try to do things that help to keep those<br />
patterns intact.<br />
Remember: your role is not to step in the way of<br />
the doctor/patient relationship. Negative<br />
comments about treatment and prognosis <strong>ca</strong>use<br />
alarm and confusion and don’t help. They also<br />
detract from the efforts of the medi<strong>ca</strong>l team.<br />
ACCOMPANY TO MEDICAL CARE. This could be a <strong>ca</strong>se<br />
of driving your friend back and forth to<br />
appointments, or even staying with them as they talk<br />
to their medi<strong>ca</strong>l team.<br />
ARRANGE MEAL PREPARATION. Either volunteering to<br />
supply an oc<strong>ca</strong>sional meal or actually setting up a
oster to show who’s responsible and on which days.<br />
Take the time to find out food preferences, and<br />
whether there are any foods that <strong>ca</strong>nnot be tolerated<br />
during treatment. Remember to check the likes and<br />
dislikes of other family members who will be sharing<br />
the meal, especially children.<br />
DON’T FORGET HOW EASY TAKE-OUT CAN BE!<br />
If cooking is just not your style, you <strong>ca</strong>n always make<br />
use of the many companies and stores that will home<br />
deliver. On Valentine’s <strong>Day</strong> the lo<strong>ca</strong>l bakery delivered<br />
a pink, heartshaped <strong>ca</strong>ke for my children. It made the<br />
day really special for all of us.<br />
SEND FLOWERS.<br />
DROP OFF MAGAZINES, or take out a gift subscription<br />
in their name. An avid reader, I found that during my<br />
worst days of treatment I didn’t have the energy to<br />
pick up and read a book; leafing through a magazine<br />
was easier and helped distract me.<br />
CHECK FAVOURITE TELEVISION PROGRAMS, tape them<br />
and deliver them to be watched at a later date. Watch<br />
out for television specials and documentaries that<br />
might be of interest and tape these too.<br />
SET THEM UP ON VOICE MAIL OR E-MAIL. If they don’t<br />
already have one of these services they’re going to<br />
need it in the days ahead. My voice mail kept me in<br />
touch with people even when I didn’t have the energy<br />
to talk to them on the telephone.<br />
DAY BY DAY 51
Side <strong>by</strong> Side<br />
“I <strong>ca</strong>n get pretty<br />
emotional<br />
thinking about the<br />
fact that my kids<br />
have lived most of<br />
their lives in an<br />
incredibly stressful<br />
situation. It was a<br />
vow to them as<br />
much as to myself<br />
that I decided I<br />
would do whatever<br />
I could to make a<br />
difference to other<br />
families going<br />
through this kind<br />
of situation.”<br />
MONICA<br />
Breast Cancer Patient<br />
52 DAY BY DAY<br />
VOLUNTEER to be the one that everyone <strong>ca</strong>lls to get<br />
health updates from.<br />
STOP BY FOR A COFFEE OR A CUP OF TEA – but bring<br />
everything with you including a thermos, cups and<br />
muffins.<br />
BABYSIT THE CHILDREN.<br />
HAVE A SLEEPOVER PARTY at their house. There were<br />
a lot of nights when I couldn’t sleep, and it meant a<br />
great deal to share those lonely hours talking with a<br />
friend.<br />
INVITE THEM OUT FOR BREAKFAST, or lunch, or<br />
dinner at a restaurant. Sometimes getting dressed to<br />
go out and be surrounded with people living normal<br />
lives really helps.<br />
DROP BY TO WATCH TELEVISION. Being a busy <strong>ca</strong>reer<br />
woman I had rarely watched daytime television.<br />
During my treatment, one friend dropped <strong>by</strong> every<br />
day at the same time and we watched her favourite<br />
Soap together.<br />
DROP OFF BUBBLE BATH, soaps, a new lipstick,<br />
earrings, s<strong>ca</strong>rves. Women particularly <strong>ca</strong>n feel that all<br />
the ‘glamour’ has disappeared from their lives – help<br />
put some back.<br />
TRY A LITTLE HUMOUR. A tricky one, you really have<br />
to know your friend well, but once they’re starting to<br />
feel better leave jokes on their voice mail, or send
<strong>ca</strong>rds. One of my Team decided he was going to be<br />
responsible for keeping some humour in my life, and<br />
he did a great job! At Easter he arrived on my<br />
doorstep dressed up as the Easter Bunny, complete<br />
with chocolate eggs for the kids.<br />
ARRANGE A VACATION. Buy the tickets, organize the<br />
hotel booking.<br />
KEEP THEM UP TO DATE with what’s happening at the<br />
office.<br />
CELEBRATE EACH MILESTONE.<br />
HELP FINANCIALLY. This <strong>ca</strong>n be a very real concern.<br />
If you’re able to help in this area don’t be too<br />
embarrassed to offer.<br />
WALK THE DOG.<br />
TAKE THE KIDS TO SCHOOL. Be there for them at<br />
special events – sports, school plays, whatever.<br />
TAKE THEM OUT FOR A DRIVE.<br />
OFFER TO RE-DECORATE THE BEDROOM. During<br />
treatment I spent a lot of hours awake staring at the<br />
walls. One of my Team <strong>ca</strong>me <strong>by</strong> and completely<br />
redecorated the room and changed the furniture<br />
around. It really helped relieve the boredom of<br />
staring at the same four walls.<br />
MOST IMPORTANTLY – BE YOURSELF.<br />
DAY BY DAY 53
Side <strong>by</strong> Side<br />
“When we<br />
experience pain<br />
we enter into<br />
the crucible of<br />
humanity where<br />
we are all trying<br />
to work out our<br />
faith and hopes....<br />
If we let it, grief<br />
<strong>ca</strong>n help us see what<br />
really matters.”<br />
When Life Hurts<br />
BRIAN C. STILLER<br />
President<br />
Tyndale College & Seminary<br />
54 DAY BY DAY<br />
EPILOGUE<br />
I wrote Side <strong>by</strong> Side nine years ago. Cancer helped<br />
define my goals of what I wanted to achieve in life. It<br />
had always been important to me to ensure that my<br />
children grew up to be content with who they are<br />
and considerate of others. Cancer sharpened that<br />
focus for me to encompass all families who are going<br />
through the trauma of a life-threatening illness, and<br />
what that means not only to the individual but to<br />
their surrounding family members, most especially<br />
the children. It’s been my privilege to see my<br />
children, Jody and Ryan, grow up into the<br />
independent, loving individuals they are. Cancer<br />
truly is a ‘family affair’, and we have to remind<br />
people that <strong>ca</strong>ncer takes prisoners of the whole<br />
family, not just the person diagnosed with the<br />
disease.<br />
MONICA WRIGHT-ROBERTS
Patient<br />
Information
Patient<br />
Information<br />
“On the whole<br />
patients are much<br />
better informed<br />
today than they<br />
were 20 years ago<br />
when I started in<br />
oncology. They<br />
want to make<br />
informed choices<br />
and they want to be<br />
able to take control.<br />
Unfortunately<br />
when people are<br />
sick they feel that<br />
much of that<br />
control is being<br />
taken away. It’s<br />
important for them<br />
to realize that we<br />
<strong>ca</strong>n only tell them<br />
what’s available –<br />
the choice is still<br />
theirs.”<br />
BARBARA JOUDREY<br />
R.N., CON(C)<br />
Nurse Coordinator<br />
In-Patient Unit, Moncton<br />
Hospital<br />
56 DAY BY DAY<br />
After-hours clinic numbers; diagnosis and<br />
treatment plan; prescription and non-prescription<br />
medicines; treatment dates – keep all this information<br />
in one place for easy access. Check with your<br />
insurance plan(s) – supportive <strong>ca</strong>re medi<strong>ca</strong>tions<br />
should be covered <strong>by</strong> most health plans. Full details<br />
on what you should ask start on page 60.<br />
Use the <strong>ca</strong>lendar pages to keep track of appointment<br />
dates and any side effects you may experience from<br />
your chemotherapy.<br />
HOSPITAL PATIENT NUMBER:<br />
HEALTH CARD NUMBER:
IMPORTANT NAMES/TELEPHONE NUMBERS<br />
FAMILY DOCTOR:<br />
TELEPHONE:<br />
ONCOLOGIST:<br />
TELEPHONE:<br />
CANCER CLINIC:<br />
TELEPHONE:<br />
AFTER HOURS TELEPHONE:<br />
CANCER CLINIC NURSE:<br />
TELEPHONE:<br />
SOCIAL WORKER:<br />
TELEPHONE:<br />
PHARMACY/DRUGSTORE:<br />
TELEPHONE:<br />
EMERGENCY CONTACTS<br />
NAME:<br />
TELEPHONE:<br />
NAME:<br />
TELEPHONE:<br />
NAME:<br />
TELEPHONE:<br />
NAME:<br />
TELEPHONE: DAY BY DAY 57
Patient<br />
Information<br />
58 DAY BY DAY<br />
DIAGNOSIS AND TREATMENT PLAN<br />
DIAGNOSIS:<br />
DATE OF DIAGNOSIS:<br />
TREATMENT PLAN:<br />
PRESCRIPTION MEDICATION<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
SIDE EFFECTS EXPERIENCED:<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
SIDE EFFECTS EXPERIENCED:
PRESCRIPTION MEDICATION<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
SIDE EFFECTS EXPERIENCED:<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
SIDE EFFECTS EXPERIENCED:<br />
NON-PRESCRIPTION MEDICATION<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
NAME:<br />
START DATE:<br />
FREQUENCY OF DOSE:<br />
DAY BY DAY 59
Patient<br />
Reimbursement<br />
Private insurance<br />
plans vary, so it's<br />
important to<br />
familiarize<br />
yourself with your<br />
policy or program.<br />
Some insurance<br />
policies require<br />
patients to pay for<br />
a portion of their<br />
medi<strong>ca</strong>l <strong>ca</strong>re out of<br />
pocket, usually in<br />
the form of<br />
deductibles or copayment.<br />
Your<br />
policy's handbook<br />
will explain how<br />
much of the cost of<br />
prescription<br />
medicine you will<br />
have to pay.<br />
60 DAY BY DAY<br />
If your doctor prescribes supportive <strong>ca</strong>re medi<strong>ca</strong>tions,<br />
you may be eligible for reimbursement under your<br />
private insurance plan, your spouse's policy, a plan<br />
provided <strong>by</strong> your province or a federal program<br />
(Veteran/Indian Affairs/Armed Forces). If you are<br />
eligible with more than one insurer when filing your<br />
claim, contact both health plans to determine which is<br />
your primary insurer and which is secondary, and how<br />
your deductible and co-payment will be covered.<br />
Supportive <strong>ca</strong>re medi<strong>ca</strong>tions should be covered <strong>by</strong><br />
most health plans. While many insurers cover<br />
prescription medi<strong>ca</strong>tion obtained from pharmacies,<br />
always check with your plan to be sure. If you<br />
currently are not a member of one of the insurance<br />
plans listed above, you may still be covered under a<br />
federal government-funded health <strong>ca</strong>re program.<br />
Please answer the following questions and be prepared to discuss<br />
this information with one of your health <strong>ca</strong>re professionals.<br />
1. Are you covered <strong>by</strong> Third Party Insurance/<br />
Private Insurance? Yes❏ No❏<br />
Coverage may be through you, your spouse or both.<br />
You❏ Spouse❏ Both❏<br />
Name of insurance companies?<br />
(1)__________________________________________<br />
(2)__________________________________________<br />
Company #1 Plan # ___________________________<br />
Group ID # ___________________________<br />
Company #2 Plan # ___________________________<br />
Group ID # ___________________________
2. Does your insurance plan provide full coverage<br />
(100%) or partial coverage?<br />
Full coverage❏ Partial coverage❏<br />
If partial coverage, what percentage do you pay? ___%<br />
If partial coverage, does the insurance plan have a<br />
deductible? Yes❏ No❏<br />
Deductible amount? $____________<br />
Does your insurance policy have a yearly or<br />
lifetime <strong>ca</strong>p? Yes❏ No❏<br />
Insurance <strong>ca</strong>p amount: $________<br />
Type: Yearly❏ Lifetime❏<br />
3. Does your insurance plan require pre-approval for<br />
some medi<strong>ca</strong>tions? Yes❏ No❏<br />
If yes, please describe: ___________________<br />
______________________________________<br />
4. If not covered <strong>by</strong> private insurance, do you have<br />
coverage through your provincial government plan?<br />
Yes❏ No❏<br />
Note: A special request may be required.<br />
5. Are you covered <strong>by</strong> any other drug program not<br />
mentioned above? Yes❏ No❏<br />
If yes, name of plan? ____________________<br />
______________________________________<br />
Contact payer to<br />
arrange details of<br />
coverage as soon as<br />
potential need for<br />
supportive <strong>ca</strong>re<br />
medi<strong>ca</strong>tions has<br />
been identified.<br />
Speaking with<br />
your social worker/<br />
pharmacist may<br />
help to clarify your<br />
reimbursement<br />
situation.<br />
In many situations<br />
the health <strong>ca</strong>re<br />
team <strong>ca</strong>n provide<br />
innovative methods<br />
in helping patients<br />
with coverage of<br />
supportive <strong>ca</strong>re<br />
medi<strong>ca</strong>tions.<br />
DAY BY DAY 61
Chemotherapy Treatment/Appointment Calendar<br />
62 DAY BY DAY
DAY BY DAY 63
Chemotherapy Treatment/Appointment Calendar<br />
64 DAY BY DAY
Resources
Resources<br />
66 DAY BY DAY<br />
SUGGESTED READING:<br />
When Life Becomes Precious: A Guide for Loved Ones<br />
and Friends of Cancer Patients<br />
ELISE NEEDELL BABCOCK<br />
This book offers hundreds of tips to help family<br />
members, friends and co-workers improve their<br />
communi<strong>ca</strong>tion with a <strong>ca</strong>ncer patient. Topics include<br />
what to say (and not to say), how to be supportive<br />
without being intrusive, how to build a winning<br />
health<strong>ca</strong>re team and which gifts and gestures <strong>ca</strong>n do<br />
the most good.<br />
The Wellness Community Guide to Fighting for<br />
Recovery from Cancer (Revised)<br />
HAROLD BENJAMIN AND SUSAN LOVE<br />
This guide, prepared <strong>by</strong> the largest <strong>ca</strong>ncer program in<br />
Ameri<strong>ca</strong> devoted exclusively to providing psychologi<strong>ca</strong>l<br />
and social support, presents a unique source of information,<br />
guidance, inspiration and hope for any patient<br />
who wants to take an active role in fighting <strong>ca</strong>ncer.<br />
After Cancer: A Guide to Your New Life<br />
WENDY S. HARPHAM, M.D.<br />
Lymphoma survivor Dr. Wendy Harpham addresses<br />
issues facing <strong>ca</strong>ncer patients as they learn to move<br />
forward and find a ‘new normal’ in their lives.<br />
Presented in a question-and-answer format, the book<br />
covers <strong>ca</strong>ncer prevention after treatment,<br />
understanding reevaluation, follow-up and common<br />
physi<strong>ca</strong>l and social after-effects.
When a Parent has Cancer:<br />
A Guide to Caring for Your Children<br />
WENDY S. HARPHAM, M.D.<br />
A survivor of non-Hodgkin’s lymphoma, Dr.<br />
Harpham’s children were aged 2, 4 and 6 when she<br />
faced surgery, chemotherapy, remission, a recurrence<br />
and radiotherapy. This <strong>ca</strong>ndid book addresses ways to<br />
combat children’s fears, answer questions and<br />
provide comfort and reassurance.<br />
Living in the Lightning<br />
NATALIE ROBINS<br />
First serialized in Self Magazine, this book is a<br />
compilation of Natalie Robins’s journal. She writes<br />
frankly, with grace and realism of her personal<br />
journey of learning to live with <strong>ca</strong>ncer.<br />
Cancer Talk<br />
SELMA R. SCHIMMEL AND BARRY FOX, PH.D.<br />
Selma Schimmel found a way to help tens of<br />
thousands of people when she created ‘The Group’, a<br />
nationwide <strong>ca</strong>ll-in <strong>ca</strong>ncer support group. Cancer Talk<br />
brings together the personal stories of the show’s<br />
diverse range of <strong>ca</strong>llers.<br />
When Life Hurts<br />
BRIAN C. STILLER<br />
Dedi<strong>ca</strong>ted to helping people who are in crisis and<br />
hurting, the author describes the keys to healing life’s<br />
hurts – hope, faith and love.<br />
DAY BY DAY 67
Resources<br />
68 DAY BY DAY<br />
ORGANIZATIONS/WEBSITES<br />
AMGEN MEDICAL INFORMATION<br />
1-888-268-1191<br />
www.chemotherapysideeffects.<strong>ca</strong><br />
www.chemoready.<strong>ca</strong><br />
CANADIAN ASSOCIATION OF NURSES IN ONCOLOGY<br />
www.cos.<strong>ca</strong>/<strong>ca</strong>no/<strong>ca</strong>no.htm<br />
CANADIAN CANCER SOCIETY<br />
1-888-939-3333<br />
www.<strong>ca</strong>ncer.<strong>ca</strong><br />
CANADIAN HEALTH NETWORK<br />
www.<strong>ca</strong>nadian-health-network.<strong>ca</strong><br />
CANADIAN ONCOLOGY SOCIETY<br />
www.cos.<strong>ca</strong><br />
CANCER ADVOCACY COALITION OF CANADA<br />
www.<strong>ca</strong>nceradvo<strong>ca</strong>cycoalition.com<br />
CANCER TREATMENT CONSULTANTS<br />
www.411<strong>ca</strong>ncer.com<br />
NATIONAL CANCER INSTITUTE<br />
www.<strong>ca</strong>ncernet.nci.nih.gov<br />
ONCOLINK<br />
www.oncolink.com
NOTES<br />
“The very act of<br />
letting the patient<br />
discuss their<br />
problems fully in<br />
an encouraging<br />
and supportive<br />
environment <strong>ca</strong>n<br />
actually improve<br />
recovery from<br />
physi<strong>ca</strong>l and<br />
emotional problems<br />
and enhance<br />
psychologi<strong>ca</strong>l<br />
recovery.”<br />
IT HELPS TO TALK<br />
developed <strong>by</strong> Health Canada<br />
and The Manitoba Cancer<br />
Treatment and Research<br />
Foundation<br />
DAY BY DAY 69
“In general, people<br />
should be asking<br />
their physician<br />
for information<br />
regarding their<br />
individual<br />
prognosis and<br />
treatment plan.<br />
If you need<br />
clarifi<strong>ca</strong>tion, ask<br />
your nurse. We<br />
really encourage<br />
people to think<br />
about the questions<br />
they need to have<br />
answered, make a<br />
list and bring it<br />
with them.”<br />
KATHY THOMSON<br />
R.N., M.N.<br />
Director, Breast Cancer<br />
Centre of Hope, Winnipeg<br />
70 DAY BY DAY<br />
NOTES