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Cancer Experience Registry
April Newsletter
Message from Joanne Buzaglo, PhD
Hope. It's seems like such a simple word, but hope
is a very complicated subject, especially when you
are dealing with a serious disease like advanced
cancer. In this month's newsletter, we explore what
hope means and why it is so important. Lillie
Shockney, RN, BS, MAS, has thought a lot about
hope and shares her insights and wisdom with us
in an amazing interview. Lillie is a two-time breast
cancer survivor who has directed the Breast
Cancer Center at Johns Hopkins Medical Center
since 1997. Her special interest is metastatic breast
cancer. If there is such a thing as an expert on
hope, Lillie is that person. For her, and for the people with whom she works, hope
is the heart and soul of the care and support she provides.
In our questions of the month we are asking you to help us understand what hope
means to you and how it influences your cancer experience.
"No One Can Live Without Hope."
An Interview with Lillie Shockney, RN, BS, MAS
Lillie Shockney is the author of 14 books, including Fulfilling Hope: Supporting
the Needs of Patients with Advanced Cancer. Shockney leads retreats
throughout the year for metastatic cancer patients and their caregivers.
Sidebar: The Origin of Hope
"Do you know the origin of hope," Lillie Shockney asks? According to the Greek
myth, Zeus created Pandora as a beautiful woman and sent her down to Earth.
He also gave Pandora a present, a lovely little box--with a lock on it. He told her
never to open it, but she was too curious and couldn't resist the temptation. When
she opened the box, the evils and diseases flew out into the world-all the troubles
humans had never known. She tried to put them back, but it was too late. There
was only one thing left in the box. It wasn't ugly. It was beautiful. Zeus had put it
there to keep people going when all the nasty things got them down. It was hope.
Hope: "What Motivates Us to Go Forward"
"By definition," Lillie Shockney says, "hope is something in the future, something
that motivates us to go forward in some manner. When someone is facing cancer,
it's important from the outset to learn what that person's life goals and hopes are
and to think about whether these hopes can be fulfilled. Are they realistic?
Sometimes, you have to step back and take a different path."
Lillie Shockney has thought a lot about hope. While she strongly believes that
there is always room for hope, she knows that for people with cancer, hope and
honesty are closely entwined. "It's really important that physicians take the time to
talk to their patients about what they can expect from a treatment. It can be a real
challenge, especially with metastatic disease, to convey hope that the treatment
will help without creating an assumption that response means a magic bullet, a
cure. Clinicians need to understand what their patients hear and what they are
hoping for."
Shockney says that good communication and asking a few open-ended
questions contributes enormously to clarifying these issues. "I have four
questions written on the back of my badge. 'What are you hoping for? What is
most important to you? What are you most worried about? What brings you joy?'
It's amazing what you can learn by asking those questions and giving people a
chance to answer them. Being honest doesn't take away hope. It helps people
transition through the phases of hope. Dishonesty is a form of betrayal."
For many people diagnosed with advanced cancers, the first phase of hope
means hoping for a miracle--hanging on to the belief that they will be ones who
beats the odds. When that doesn't happen, it's important for a person to embrace
the idea of living for as long as possible with good quality of life. The next stage,
which occurs if the disease progresses, is for the patient to accept the possibility
of a shortened survival while still wanting the best possible quality of life during
that remaining time. Finally, patients, as they near the end, can hope for a good
death.
Shockney asserts that a good death is a realistic hope and that medical teams
have a responsibility to work with patients and families to orchestrate that event.
"We work as a team," she says, "and there are several very concrete elements
that can make for a good death. It should be pain-free and in the environment that
you choose. 91 percent of people choose being in hospice at home, if they are
asked, but only 20 percent are ever asked.
"We also talk about giving and getting forgiveness. 'Who is important to you?
What relationship in your life do you want to heal before you go?' Many people
are very concerned about how they will be perceived after they die, so we let
them address those issues.
"We also find that many of our patients don't want their families to suffer
financially from their cancer treatment. The patient may choose to stop treatment,
but there are times when the family gets upset or feels like we are abandoning
that person, and the patient ends up consenting to treatment that is expensive,
doesn't work and can compromise the quality of the remaining life. All of these
matters have to be dealt with honestly and directly--and they are very much part
of sustaining hope throughout life."
In some instances, the goal is to assist people with achieving goals in different
ways. "I may have a person with advanced cancer say he or she wants to be
there for a daughter's graduation--and the child is 10 years old. We may not be
able to make that happen, but we can help that person be there in other ways. We
often encourage people to write letters or cards to people they love for special
occasions over the years to come--birthdays, graduations, weddings--whatever is
important. They know that they will leave a legacy to the people they love that
has nothing to do with money and that their voices will be heard and valued."
Shockney also stresses that maintaining hope throughout life and getting to a
good death doesn't happen in a few days. It takes time, planning--and again
honesty. It also requires that the patient and family members have a mutual
understanding and acceptance of what is happening. "Sometimes I have to be
tough with family members. They just want to keep the person they love in
existence. We work on respecting the loved one's life, on giving the patient
control. I tell them when it's their turn; they can make their own decisions. When
my own father was dying, my mother didn't want him to stop treatment, and he
said to her, 'You need to love me enough to let me go.' Once we reach that
understanding, things get better."
The bottom line, Shockney says, is that "we make it harder by not addressing
what is important to every patient at every stage of treatment. They say there is a
tiny spot in the brain associated with hope and that it is the last place firing when
you die. Hope is possible for everyone. You cannot live without hope."
Clinical Trials: Symposia/Workshops
In the next few months, a number of our Cancer Support Community and Gilda's
Club Affiliates are offering special symposia on understanding clinical trials.
These events provide a great opportunity to learn more about how clinical trials
work and why they are so important for improving cancer treatment and quality of
life. Each workshop includes a presentation from an expert, as well as the
opportunity to ask questions and talk about the issues that either motivate or
discourage people from participating in clinical trials. The full schedule is listed
below. For more information, call the Cancer Support Community or Gilda's Club
Affiliate near you.
The workshops are part of a major project the Cancer Support Community is
conducting. To learn more or obtain copies of the new materials on clinical trials,
please click here.
2016 Frankly Speaking about Cancer: Clinical Trials
Workshops
Greenville Health System
Cancer Support Community Montana
Gilda's Club Madison
Gilda's Club Quad Cities
Cancer Support Community Central Indiana
Cancer Support Community Central New Jersey
Cancer Support Community St. Louis
Cancer Support Community Redondo Beach
Cancer Support Community Greater Cincinnati-Northern Kentucky
Cancer Support Community Delaware
Cancer Support Community Greater Philadelphia
Gilda's Club Greater Toronto
Cancer Support Community Central Ohio
Gilda's Club Nashville
Gilda's Club South Jersey
Join the Cancer Experience Registry
If you are a participant in the Cancer Experience Registry, you know what a
valuable resource the Registry is for people facing cancer and their caregivers.
You can help us grow the Registry, and make your voices heard by encouraging
the people you know who have been impacted by this disease to join the
Registry as well. By bringing just one new person to the Cancer Experience
Registry, you will help us reach our goals of continuing to improve the cancer
experience for every person impacted by cancer.
Go to www.cancerexperienceregistry.org to join.
Join our Grassroots Movement
You're Invited: Join the Cancer Support
Community's Grassroots Action Network!
Last year, the Cancer Policy Institute
launched the Grassroots Advocacy
Network, an advocacy movement
conducted virtually through a web-based
community. This network offers a platform
for communicating the interests of the
cancer community to local and national
level policymakers, as well as providing
information through advocacy training
webinars and educational briefings.
We would like to encourage you, as a member of the Cancer Experience
Registry, to join the Grassroots Advocacy Network. Your voices and experiences
are fundamental in helping policymakers understand what is important to people
living with and beyond cancer. Your participation will impact the decisions made
in Washington, D.C. and across the country.
Together, we can help ensure that people touched by cancer have access to high
quality, comprehensive cancer care that includes social and emotional
support. No one can speak on these issues better than someone like you, who
has seen firsthand the struggles of this disease. To join, simply visit
www.CSCAdvocate.org and click the "Join Now" button in the upper right hand
corner. For more information about the Cancer Policy Institute, please click here.
Questions of the Month: April 2016
This month, we would like to hear from you about your experiences with hope
throughout your cancer journey. Please click here to answer a few questions so
that we can provide you with the topics that interest you the most.
How have your own hopes for the future changed during the course of your
treatment?
Have you thought about what a good death would mean? How do you
define it?
What do you hope for most right now?
What We Learned from You: March 2016
In last month's newsletter, the Questions of the Month focused on rehabilitation.
Here are some of your responses:
"I have been working with a physical therapist ever since I finished
treatments in late summer 2014. She has given me exercises to do at home,
daily exercises to do in a swimming pool, and suggested I get a personal
trainer at the YMCA paid for by Livestrong for 12 weeks. The physical
therapist treats my overall deconditioned body and my lymphedema
specifically. She provides ongoing support to improve my quality of life. She
helps me understand when to push and when to rest. She encourages me to
be proud of my body and of my recovery. I have graduated from seeing her
several times a month to a few times a year. She has guided every step of my
physical recovery with handouts, emails, product suggestions and referrals.
She is helping me learn how to live in my post-cancer body."
"My surgeon just told me to "walk up the wall" to try to avoid having "frozen
shoulder". He really should have sent me to physical therapy/rehabilitation to
help treat the nerve damage I have had since 2009."
"As a breast cancer survivor, I was concerned about being able to go back to
my pre-mastectomy exercise regimen and about preventing lymphedema. I
was fortunate to receive services from a reputable cancer center where there
were two physical therapists on staff. My experience was more exercise
oriented, but I can see the great value in rehabilitation aspect, especially with
regard to fatigue. That would have been very helpful for me."
"My doctor thought my compression garment was probably uncomfortable
and unnecessary, but he was still willing to sign the prescription for me. He
would refer me to a physical therapist and a lymph massage therapist. These
were my suggestions, not his. I started therapy as soon as my treatments
ended. But it was not until he saw me swell up after getting a few chigger
bites that he recognized how much I truly needed all of these interventions.
That I had been right to be doing them as soon as my treatment ended."
"From my initial surgery and chemotherapy, I knew my treatment center had a
comprehensive program for survivorship. The program includes nutritional
education, psychologists and social workers for counseling, music therapy,
yoga, and physical rehabilitation. The program is well promoted to cancer
patients and their caregivers."
To see everyone's responses, click here.
Resources
Quality of Life: http://www.cancersupportcommunity.org/living-cancer/livingcancer-topics/quality-life
Has quality of care improved for individuals living with serious illness, or
those nearing the end of life?
To assess progress since the release of the Institute of Medicine's Dying in
America report in September 2014, and to inform the work of a new round
table discussion on Quality of Care for People with Serious Illness (which
CSC HQ will be participating in), the National Academy of Medicine is
conducting a nationwide survey to track improvements over the past 18
months, discover barriers that have prevented progress, and better
understand current areas of need.
Your feedback will help the new round table shape its work over the next
three years. Please tell us about your experiences, and encourage your
friends and colleagues to take the survey as well.
Click here to take the survey.
For more information about the round table, contact Laurie Graig at
[email protected].
Beyond Treatment: http://www.cancersupportcommunity.org/living-cancer/livingcancer-topics/beyond-treatment
During and After Treatment: Stories of Hope
Many Thanks!
We hope that this newsletter is meaningful to you. Please feel free to contact us with any
questions or feedback at [email protected].
Until next time, take care and be well.
-The Cancer Experience Registry Team
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The Cancer Experience Registry is a movement to help us better understand the social and
emotional needs of people living with cancer so that we and others can develop new resources that
give support to the more than 12 million people touched by or living with cancer each year.
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Our Mission: To ensure that all people impacted by cancer are empowered by knowledge,
strengthened by action and sustained by community.