Cancer Survivorship and Quality FOR Life: Shaken, Stirred, and Movin' On!
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Transcript of Cancer Survivorship and Quality FOR Life: Shaken, Stirred, and Movin' On!
Cancer Survivorship and Quality for Life :
Shaken, Stirred, Moving On
Brad Zebrack, Ph.D., MSW
University of Michigan School of Social Work
Shaken
“Life on hold”
“It’s the ‘good’
cancer”
“I know how you feel.”
“Victim to Victor”
Positive Attitude
Be a survivor
What is Cancer?
Dis-ease vs Illness
Cancer as: Bi-ology
Path-ologyPhysi-ology Cancer as an
experience of life
What is Cancer Survivorship?
Medical PerspectiveFocus on survivalReduce symptoms
Prevent long-term effectsManage symptoms
Off-treatment (e.g., 2 yrs, 5 yrs)
Cancer Survivorship“Seasons of Survival”
Acute phaseRecovery phase
Long-term survivalDisease-free
Cancer as a chronic diseaseEnd-of-Life
Patient Perspective
The notion of living with, through, or beyond cancer.
Susan LeighSurvivorship Consultant3-time cancer survivor
Cancer Survivorship1.5 million cases diagnosed each year
12 million cancer survivors in the US
2/3 of all cancer patients expected to live at least five years
While these statistics indicate increased length of survival for individuals diagnosed with cancer, they give no indication of the quality of life.
How Has Cancer Affected Your Life?
Life Changes
“This is what I picture…this is really weird, I see, like, a grave, and that’s the person that died, on August 4th. She’s gone. Because you know, my life had to change, I had cancer and I can’t go back there, I can’t go in the past, so it’s like, she’s gone.”
Miki, 21
Diagnosed with
leukemia at age 18
Impact of Cancer
Stirred
Not quantity but quality
Physical Well-being
Emotional Well-being
Spiritual Well-being
Social Well-being
Physical Well Being
“It [cancer] has taken a lot of things away from me. I used to ski, play golf and tennis, and physically I also have a bone disorder now because of all the drugs. And there’s resentment that those things were taken away from me.”
“I’m so scarred up and everything is out of place. That is really hard for me to accept.”
Physical Well-BeingBODY CHANGES HEALTH AWARENESS
Energy not returned
My body cannot do what it did before
Feel disfigured
Wear clothing to cover up
More concerned about my health
More aware of physical problems and changes
Take better care of self
Emotional Well-BeingPOSITIVE FEELINGS NEGATIVE FEELINGS
Sense of pride
Learned something about self
More confidence
Desire to give back to others
Angry about having cancer
Feel guilty for being responsible for getting cancer
Made me feel old
Feel guilty for not having been available to family
Emotional Well-BeingMEANING OF CANCER SOURCE OF WORRIES
The most difficult experience of my life
I wonder why I got cancer
Cancer is reason to make life changes
Gave me direction in life
Worry about my health
Worry about cancer coming back or getting another cancer
New symptoms make me worry about cancer coming back
Social Well-BeingRELATIONSHIPS
LIFE INTERFERENCES
Higher value on relationships than before
Feel special bond to people with cancer
Paying attention to health interferes with my life
Having had cancer keeps me from activities I enjoy
Cancer-related symptoms interfere with my life
Spiritual Well-BeingPOSITIVE OUTLOOK NEGATIVE OUTLOOK
Realize time is precious
Strengthened religious faith or sense of spirituality
Learned something about life
Feel unsure about my future
Worry about my future
Afraid to die
Feel like time in my life is running out
Two Faces of the Cancer Experience
Haase & Rostad, 1994
Movin’ On!
A LONG TERM SURVIVOR
“While the cancer is not something I would want to do again it is not something I would want to erase from my life. It has taken some stuff away, but what it has added has completely overcome anything that might have been taken away.”
28
Thriving“Those who thrive after cancer are able
to put life and death into perspective and consequently create a special niche for their cancer experience within their personal life history.”
Susan Leigh3-time cancer survivor
Co-founder, National Coalition for Cancer Survivorship
Wei-jiCRISIS =Danger + Opportuni
ty
EMERGENT THEMES OF GROWTH/THRIVING(Their stories)
Greater strength, via recognition of vulnerability and struggle
“What does not kill us makes us stronger”
Greater compassion and empathy
Psychological maturity
New life priorities and outlooks
31
STRENGTHBecause it’s a strong, long fight, with
so many emotions involved, you have to keep a clear head and a good outlook the whole time to be fighting something. I think just that experience alone made me stronger.
I definitely felt stronger after having gone through it all. Since I got through this I can get through anything. 32
GREATER COMPASSION/EMPATHY
I think overall it made me more appreciative and maybe more sensitive. By sensitive I mean understanding how other people can feel. Because of the fact that I had to deal with having an artificial eye, and people making fun of it, has made me more understanding and accepting of people with disabilities.
33
PSYCHOLOGICAL MATURITY
Cancer made me more mature. It just made me grow up. I had to deal with things that other people didn’t.
The experience made me more mature, more than older guys. I’m serious about what I say and do and have no reason to play around. I know I’m mortal, as funny as that sounds. A lot of people are living for the day, which is great, but I don’t know as though they appreciate what they’ve got.
34
NEW PRIORITIES AND OPTIMISM
Even though cancer was really bad I learned a lot about what’s important in life. Like money’s not important to me anymore. I just want to be happy and have someone to love and love me. I’m going to be a teacher, not a high paying lawyer or something.
Materialistic things don’t matter a lot – they’re nice but it’s not the end of the world if you don’t have it.
35
CANCER IS A DOUBLE-EDGED SWORD
Gains and losses
Growing up ‘faster” perhaps offset by loss of childhood
Hope and fear – anxiety/sadness and appreciation of life
Celebrations of cure or going off treatment, but uncertainty
Balancing of loss and gain
36
MAKING SENSE OF CANCERAn active quest or journey to make sense of a mystery/challenge
Developing a story that makes sense (positive meaning) of the cancer experience
Fitting “my/our cancer story” into a larger life story
Sharing (and testing and revising) my/our story with supportive communities of family, friends, other survivors, publics
37
Becoming an Advocate
“Knowing as much as possible about your disease, its treatments, and how its potential effects on your
body can empower you to take charge of your health and help you make the most of your
survivorship.”
Young Adult Survivors Conference (YASC)
Young Adult Survivors Conference (YASC)Our GoalsAddress
survivorship issuesProvide education
and opportunity to tell one’s story
Build bridges of support among young adult cancer survivors
Their GoalsHave funMeet other
survivorsUnderstand more
about their cancer and potential late effects
Learn about how to “tell my story so that it will help others.”
Advocacy Training
Personal AdvocacySelf-advocacy: Where it all begins
You and Your DoctorForget about Waldo: Where are those Resources?
Advocacy Training
Mentor Advocacy: Advocating for Others
Becoming a MentorDo’s & Don’t of Public SpeakingEstablishing and Maintaining Connections: A
Gateway to Community-Building
Advocacy Training
Community-National AdvocacyAdvocating at the State and National LevelGetting Involved in Public PolicyNetworking within the Survivorship
Community
I joined a community of survivors and met people I expect will be good friends. I also learned a tremendous amount about advocacy and feel much better equipped to get involved on state and national levels. I have been given the tools to begin to use my experiences to advocate for greater resources, and I expect that will also greatly increase my sense of satisfaction in my life.
Advocating for OneselfAdvocacy gives you some stability and a
feeling of regaining some control in your life
Advocacy is confidence building in the way it helps you face challenges that seem insurmountable
Advocating for OneselfAdvocacy can improve your quality of
life
Advocacy for yourself may be the difference that turns feeling hopeless and helpless into feeling hopeful.
The Cornerstone of Survivorship
“Regardless of the type of cancer or the extent of survival, all persons diagnosed with cancer must manage the enduring and complex ways in which cancer transforms the self and everyday life.”
Betsy Clark, Former President Ellen Stovall, Executive Director
National Coalition for Cancer Survivorship
Shaken-Stirred-Moved On
Kid Kancer KookieDada