Cancer Caregiver Journey: Important Lessons Learned

Dear Friends:

It has been a long, hot summer! For cancer patients and their families, summer isn’t always an opportunity for vacations, or fun and relaxing. The kids are home from school, but mom and dad still need to work and keep up the same routine of doctor’s visits, or treatment. Finances can also be an issue. Many couples, families or singles who are battling cancer don’t have the extra money or time to get away. Sometimes, simple and short getaways or ‘staycations’ can help. If you haven’t had a break, please try and do something special with friends and family before summer ends. Try a backyard barbecue, visiting a friend with a pool, or a drive to a cooler place just for a change of scenery before the fall schedule and routine starts again.

For the Caregiver, summer or any Holiday isn’t time off. We often have the same schedule and same routine. We are still the Caregiver! It is a full time, year round job. A lesson that I have learned is sometimes we need to give ourselves time off and time away. Even short mini-trips can help! Or, maybe you need a ‘no commitments’ time just for you. Possibly a day spa; yoga retreat; a night out with friends; a movie, concert, or whatever ‘works’ for you. If you are a guy caregiver, you might prefer to go to a ball game, fishing, to the gym or just have lunch with your buddies. The important thing for both men and women is to schedule some time just for you.  Most important, don’t feel GUILTY. You deserve it!

Some important Lessons that I have learned:

* There are religious, cultural, geographic, age and gender differences in the way people deal with cancer. What we all have in common is fear, confusion, sadness, anger, and an array of other emotions and practical concerns.

* The word Cancer makes other people uncomfortable. They don’t know what to say to you, or they tell you about a friend or relative with cancer. It is not your responsibility to make them feel better. Accept their ‘I’m so sorry’ and either ‘move on’ or let them know some way that they can be helpful.

* You are a Cancer Care-Giver not a Cancer Care-taker! You are ‘giving’ of yourself, not ‘taking’. There Is no rule-book, nor one right way. We are each different and so is our patient.

* Delete the words: ‘I should’ and ‘selfish’ from your vocabulary. There are too many ‘Shoulds’ in our lives. We need to try to balance what really needs to be done and what can wait,  or what someone else can do. I recommend that you consider what is really important for you and the one you care for. ‘Selfish’, according to the dictionary, means ‘caring for self’, which is what we all need to do.

* Take time to say ‘I love you’ every day and share a moment to appreciate yourself and each other! And, my husband’s advice over the years is: Have a laugh! He leaves a cartoon or joke on my computer every morning!

It would be great to hear from you. Email me, go to my website: www.azmylomanetwork.org, and look me up on Facebook! Share your own advice, inspiration and Journey. Together we can make a difference and be a true Cancer Caregiver community!

Best Regards,

Barbara

 

 

 

 

 

 

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 (CCEP ^TM) 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. CCEP ^TM 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.