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!