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  • Writer's pictureLinda Peterson

Lessons Learned as A Cancer Caregiver

Updated: Apr 13, 2022

I remember the exact moment we learned that my husband of 18 months had incurable cancer. Finding each other later in life was an incredible blessing, so how could this be happening to us? I say “us” intentionally because when a family member receives a cancer diagnosis, the whole family is impacted. My husband is the strong, silent type who deals with any crisis head on, so it was hard to know exactly what he was feeling. I, on the other hand, was a mixed bag of emotions from anger, disbelief, fear, grief, and hope. That diagnosis came 12 years ago and many lessons have been learned through our years of living together with cancer.

Believe the diagnosis, but not the prognosis. When diagnosed with cancer one of our first questions is “what’s the prognosis” and I, too, asked this question of the Oncologist. The answer was that people live anywhere from 1 ½ years to 20 years with this type of cancer. We looked at each other and said, “OK, we’re going for 20 or more”! There are hundreds of stories of people who have lived well beyond their prognosis by taking a proactive approach to their health and healing.

Educate yourself. We knew nothing about Non-Hodgkin’s Lymphoma or CCL, so we started researching. This takes courage, but it is better to be armed with knowledge than to live in fear of the unknown. We researched different holistic approaches to treatment, environmental factors and lifestyle choices that could supplement the chemotherapy. This included nutrition, exercise, mindfulness and meditation, nutritional supplements, yoga, spirituality, laughter, and attitude. We chose to focus on high quality nutrition, abundant laughter and positivity.

Go to appointments and ask questions. I learned early on that my husband is one of those guys that does not ask the doctor questions and if he does, he may not recall the answers by the time he gets home. This caused frustration, so I started going to most appointments with him and reluctantly got his approval to ask questions. These appointments are always emotional, not knowing whether you will learn that things are holding steady or if the cancer has become aggressive. Write your questions down, be persistent about answers and keep good notes and records.

Don’t put your own needs on the back burner. A cancer diagnosis can become all-consuming, physically and emotionally. It is easy to put your personal needs on hold to give your total attention to your loved one. This can quickly lead to compassion fatigue and caregiver burnout. It is not selfish to nurture yourself while caregiving, in fact, self-care is critical to maintaining your balance and your own health. As the flight attendants tell you, put on your own oxygen mask first! Seek out trusted friends or professionals to share your feelings and get much needed support.

Laughter is great medicine. It can feel insensitive to laugh, play and experience joy during a loved one’s illness. Cancer is serious, but especially during times of illness, fear and uncertainty, laughter and joy can be an incredibly healing force. One of my goals since we started living with cancer is to give my husband at least one good belly laugh every day. We watch movies and TV shows that are uplifting and that bring joy to our spirits. Even during the darkest hours of life, there is something to be grateful for and joy to be experienced.

Be a good listener. As much as we want to understand what it means and how it feels to be on the receiving end of a cancer diagnosis, we can’t. We want to help, but we don’t always know how. Listening deeply and just being fully present can be the greatest gift you can give your loved one. Don’t be afraid to ask, “What do you need most from me?” For my husband it was to not be coddled, pitied or treated as a cancer patient.

Look for the blessings. It may be hard to imagine any blessing coming from a cancer diagnosis, but it can lead to greater emotional intimacy and greater sense of purpose. There is so much we take for granted, including people, time and even life itself. When we face the possibility of losing those things, they become more precious to us. Illness can force us to slow down and listen to our body, our heart and our spirit.

Get busy living… Although we all know we have limited time here on earth, there is nothing like a cancer diagnosis to bring that reality into focus. One of my favorite quotes from the movie The Shawshank Redemption is “we have the choice to get busy living or get busy dying.” I remember my husband saying, “I am not going to sit in a chair and wait to die.” He got busy living and I believe that is why we are celebrating 12 years of living with cancer.

~By Dr Linda Peterson, PhD, NCC, CLC, CHC

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