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Caregivers are Cancer Survivors, too
Cancer caregivers are CO-SURVIVORS and need ENCOURAGEMENT, too, because we also experience the JOURNEY from the moment our loved one is diagnosed with cancer. We face our own FEARS, we find our own COURAGE, we keep the FAITH for our loved one as well as our family, friends, and support network. We need SUPPORT and HOPE so that we will remain STRONG and SURVIVE ourselves. At the HEART of the matter is this: We need to face and EMBRACE LIFE when it CHANGES.
"Self-care is never a selfish act — it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others. Anytime we can listen to true self, and give it the care it requires, we do so not only for ourselves, but for the many others whose lives we touch." — Parker Palmer, author of "Let Your Life Speak"
American Brain Tumor Association's new “Orientation to Caregiving” Handbook
Brain Tumor links - our list of organizations that were indispensable on our journey.
Cancer Care - Fact sheets on variety of topics from this national non-profit organization
Cancer Survival Toolbox The award-winning Cancer Survival Toolbox® is a free, self-learning audio program to help people develop important skills to better meet and understand the challenges of their illness.
Caregiver.com From the editors of Caregiver Today magazine, this site ofers much support plus a free Fearless Caregiver Weekly Newsletter.
CareGivers4Cancer.com a support site with tips, tools and techniques to educate and assure caregivers and oncology teams there are ways to ease the journey’s relentless demands.
CaringBridge offers free, easy-to-create web sites that help connect friends and family when they need it most.
Family Caregiving 101 is a place to find assistance, answers, new ideas and helpful advice — for you and your loved one.
Lance Armstrong Foundation at www.livestrong.org inspires and empowers people affected by cancer. LAF helps people with cancer focus on living. From the moment of diagnosis, the LAF provides the practical information and tools you need to live life on your own terms. Contact the LAF to request your free LiveSTRONG Notebook, a great way to organize and prepare for medical appointments and track medications and treatments..
Lotsa Helping Hands provides a free community coordination service for people going through life crises. A patient’s multiple communities can log on to see what the person needs and sign up for specific tasks, from bringing food to running errands to providing transportation to walking the dog.
National Coalition for Cancer Survivorship (NCCS) offers free publications and resources that empower individuals to become strong advocates for their own care or the care of others. NCCS also advocates for changes in how the nation researches, regulates, finances and delivers quality cancer care.
National Family Caregiver Association is a support and advocacy group that helps caregivers answer "How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones?"
People Living With Cancer (www.plwc.org) by the The American Society of Clinical Oncology provides information for those recently diagnosed or undergoing treatment for cancer.
RedToeNail.org, an online community for people with cancer. The site allows anyone to set up a secure blog (see CURE, Summer 2005) to record what is happening in his or her cancer experience. Friends can log on and ask for e-mail updates whenever an update is posted. Your blog is whatever you make it. Friends and family can leave comments, discuss and contact you through the blog. It can be open to the public or visible only to those you invite.
Strength for Caring is a large website full of tips for coping as a caregiver.
Students of Ailing Mothers and Fathers Support Network College students supporting college students grieving the illness or death of a loved one.
Tug McGraw Foundation provides resources and support to improve quality of life for people with brain-related trauma, PTSD, TBI, and brain tumors, as well as foster understanding, promote awareness and stimulate research and scientific collaboration.
Well Spouse Association offers resources for coping and survival skills, an on-line chat forum for spousal caregivers, organizes regional respite weekends and a national conference for caregivers, and much more.
MY CAREGIVER STORY:
I BECAME PRIMARY CAREGIVER TO MY HUSBAND when he was diagnosed with a malignant brain tumor, a gemistocytic astrocytoma grade 3 to be exact. That was in November 1998, when we were both 33 years old and our son was 4. We're all survivors today... I've written a book to tell the whole family's tale—learn more about the book, Damocles' Wife. I am no longer married to Scott, who is traveling the world, tumor free---we are both living new "books" in our lives (beyond just new chapters). My other online place is EmotikinWorld.com, which is my tribute in itself to transformation from caregiving to creative living.
Read a short version of Scott Vickroy's Brain Tumor Success Story, which will then take you to links on brain tumor treatment and hope.
CAREGIVER & CANCER SURVIVAL STATISTICS
More than 65 million people are caregivers, 29% of the U.S. population, providing care for a chronically ill, disabled or aged family member or friend during any given year. Of that number, 66 percent of caregivers are women. Three of four families will find themselves caring for a
cancer patient. See more enlightening caregiver statistics from the National Family Caregivers Association.
The National Cancer Institute estimates that nearly 12.5 million Americans with a history of cancer were alive in January 2009 (this is called Prevalence). Unrecognized in this statistic are the cancer caregivers who also survived the ordeal, at least 12.5 million if you count one caregiver for one patient. (Source: SEER)
The American Cancer Society estimates that 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. Approximately 1.68 million men and women will be diagnosed with cancer in 2012. (Cancer Facts & Figures 2012).
More people are surviving cancer. The 5-year relative survival rate for all cancers diagnosed between 2001 and 2007 is 67%, up from 49% in 1975-1977. (Cancer Facts & Figures 2012).
Over 28 million cancer survivors live worldwide. See the many reports on survivorship issues by the Lance Armstrong Foundation.
If you've ever wondered how you might find the courage, hope, and faith to face the challenges of cancer and caregiving, you're not alone.
Or please ask for it at your favorite local independent bookstore, who can order it for you.
Tattered Cover: 303-322-7727
a glimpse into the new book that reveals the inner journey
of a cancer caregiver, a young
wife and mother whose husband becomes a long-term survivor of brain
cancer. It's the whole family's story of learning to cope not only with the practical aspects of cancer and
caregiving but, most essentially, how
to really survive
Join their journey as they learn to take down the Sword of Damocles hanging over Scott’s head and finally embrace life with all of its changes.
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Damocles’ Wife: The Inside Story of Cancer Caregiving & Long-Term Survival in the Midst of Motherhood, Marriage & Making Life Matter
Shelly L. Francis
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I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.
I have the right to get angry, be depressed, and express difficult feelings once in a while.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn't matter if loved ones know they are doing it or not.)
I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
I have the right to take pride in what I'm doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.
—by Jo Horne
Here is a printable version you can put in your journal, pocket or fridge to remind yourself, as a caregiver, that you have the right to take care of yourself.
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A word from your sponsor...
If you like this website or wish for encouragement
on a specific step in the caregiver journey,
A poem for you from me
|Read Scott Vickroy's Brain Tumor Success Story|