This month I would like to talk to you about loneliness. Ironically, I think that I am lonelier than my husband, the cancer patient. He has ‘guy’ friends. They know he has cancer, but he never talks to them about it. He talks sports, politics, travel, baseball, and more baseball. Yes, I said baseball twice…because he Loves it and has since he was a child. He has a dedicated exercise routine involving either swimming or walking every day. Last summer, he was desperately ill from two rare’ bacterial infections and was in excruciating pain and couldn’t walk. After extensive treatment and rehab, he got back to his routine. Meanwhile, I lost weight, had trouble sleeping, and even my hairdresser couldn’t cover all of the grey!
Everyone who called us during the three months that he was in ‘crisis’, started every conversation with: “How’s Jack”? I am fortunate to have two daughters and two grandchildren who called, sent notes, and flew from California to Arizona to visit me while he was ill. A few kind friends did call and one or two took me out to dinner, but, people are busy with their own lives while yours is on’ hold’. Ironically, while the patient often has a very structured lifestyle while in serious care, the caregiver’s life becomes occupied with hospital visits, doctor interviews, hospital and medical costs, insurance claims and worry.
Most friends, family, co-workers, and the general public don’t like to talk about cancer or ‘think’ about cancer. It makes them feel sad and helpless. I have learned over the 27 years of ‘living’ with cancer, that I have to help other people find ways to be in my life and also try to develop a life of my own.
Some lessons I have learned for myself and from other cancer caregivers:
• Plan at least one fun activity of your own each week, or as often as you can.
• Develop your own fitness/health routine: yoga, walking with a friend one or two mornings or evenings a week. Preferably an activity that gets you out of the house and away from your ‘caregivee’ and away from work or other responsibilities.
• Join a book club, a social club, take up golf, a barbecue class, painting class, and for me, I get my hair done every week.
• Take up a new interest or activity with your ‘caregivee’ so you are not talking ‘cancer’, ‘work’, or ‘kids’. For me, it is dance lessons that Jack and I are taking. We are looking forward to our debut on Dancing with the Stars next year!
• Watch a mindless TV show. My favorites are cooking, travel and bridal shows. They are fun and upbeat. Try to avoid too much news! No matter what your politics, it is bound to depress you.
• Sneak off for a matinee movie occasionally and buy a big bag of popcorn! The movies are cheaper and you can be alone and lose yourself in the movie.
For me, what has helped with the loneliness and isolation of cancer is that I like to teach, write, and help people. For me, helping others has always given me purpose and perspective. So I started a 501c3 cancer charity, Arizona Myeloma Nework,®14 years ago. We provide free cancer education and advocacy programs for cancer patients, families, and healthcare professionals.
In the last 5 years, we added our Cancer Caregivers Education Programs,CCEP®which is open to All cancer patients and caregivers. It has been a huge responsibility and challenge, but incredibly rewarding.
I have met many amazing people whose courage and humor are inspiring. I have also met wonderful doctors and researchers who are making amazing progress and giving us hope. A special thanks to the wonderful cancer patients and caregivers who write and call me to share their own stories and advice! If you are in Arizona on Saturday, October 20th, come to our free Cancer Caregivers Conference. More details at: www.cancercaregiversaz.com.
Together, we are building a true Cancer Caregivers Community!
Barbara Baroff Kavanagh, MSW, LCSW
Barbara B. Kavanagh is the Founder and CEO of Arizona Myeloma Network (AzMN). She is a published author and served as faculty for universities including Boston University, Boston College Graduate School of Social Work, and Arizona State University. She holds a master’s degree in Social Work from Boston University and a bachelor’s from Duke University. Her first business, People to People Associates, Inc., a counseling, consulting, and training company, operated for fifteen years in Lexington, Mass.
AzMN is 501(c)(3) nonprofit organization started in 2004 by Barbara and her husband Jack who is a 27-year survivor of multiple myeloma. In 2003, they moved to Arizona to be near the Mayo Clinic for his ongoing treatments. In 2005, Barbara organized the first of many Living with Myeloma Roundtable and Conferences in Scottsdale, AZ. The conference attracted more than 300 attendees annually. All AzMN programs are designed to educate cancer patients, cancer caregivers, oncology healthcare professionals, researchers, and the public on the newest in cancer treatments and how to give and receive the best possible care.
AzMN has delivered hundreds of cancer patient and caregiver conferences throughout the State. Multiple Cancer Caregiver Education Program (CCEPTM) conferences are scheduled in 2018. Conferences are free and open to the public. They provide cancer patients and their caregivers the practical knowledge, skills and strategies necessary to effectively care for themselves. CCEPTM is a customizable program for companies and healthcare organizations that want provide onsite training for employees and constituents.
The Office of the Governor of Arizona recognizes AzMN with a proclamation annually designating a week in March as “Arizona Myeloma Awareness Week.” AzMN is recognized by Great Nonprofits as a “Top-Rated Nonprofit” for multiple years. Barbara, herself, continues to receive awards for her work. She is the recipient of the prestigious Hon Kachina Outstanding Volunteerism Award, The Phoenix Business Journal’s Healthcare Hero Award, the Arizona Rural Healthcare Association Volunteer of the Year award and the 2014 Arizona Business Magazine’s Healthcare Leadership Award for Community Outreach. She was profiled as a Woman of Distinction in the 2016 edition of WOD Magazine. She is featured on radio, television, and in publications.
Barbara and Jack are mentioned in Tom Brokaw’s book A Lucky Life Interrupted: A Memoir of Hope. Her books on volunteerism and patient advocacy include The New Volunteerism, A Community Connection; The New Partnership: Human Services, Business and Industry; and Training Volunteers in the New Millennium: An International Connection reflect a life dedicated to teaching and mentoring others to achieve their goals and transform their own lives and those they touch. She is currently working on her next book “Caring for the Cancer Caregiver”. Her intent is to provide practical information on how to navigate the complex world of cancer patient and caregiver survivorship.