Stories and Experiences of a Cancer Caregiver

The diagnosis of blood cancer affects both the patient and family in numerous ways. My loving husband took terrific care of me during my cancer journey, especially during the chemotherapy treatment while I was suffering from incapacitating fatigue. The following are comments from his perspective.

After experiencing the best summer of our lives at the beach, we received a sudden unexpected surprise: my wife had non-Hodgkin lymphoma.

I was unsure what to do as my wife was my "medical expert."

We learned together

My plan was to support and love my best friend, my wife. I would accompany her to all tests and treatments, hold her hand, listen, and be non-judgmental while taking cues from my lifelong partner. I would cook, shop, and be there. My wife did not want to share details of her illness with our family, so I became the spokesperson and informed the concerned family of her progress.

I learned to be patient and careful with my suggestions. My wife was not happy with the watchful waiting protocol. When the disease had progressed and chemotherapy was ordered, I made the mistake of suggesting that beginning treatment is what she had wanted. This resulted in strong words and tears.

Try to anticipate your partner’s needs and what essential tasks need to be done at your home. My wife and I would later joke that weeding of the lawn was never done as well as cleaning the grout between the tiles. These were things done by my wife before she became ill and not a priority now. I am naturally optimistic - the glass is always "half full." My wife is more of a realist, who needs to consider all options. Instead, do not argue, just listen.

Expect bumps in the road. Several days after my wife’s first and second chemotherapy treatments, she was hospitalized with fever and rule out sepsis. Was this how all treatments would be?? Fortunately, that was not to be the case.

Fear can present as anger

Be sure to take care of yourself as the caregiver. I have a strong cardiac history and made sure my medications were taken and up-to-date labs and physician visits.

Recognize times of scanxiety. My wife would become nervous as she anticipated her next CAT scan. I would try to be patient and supportive.

It is important to understand your own feelings which may range from sadness to anger, grief, and loneliness. Focus on things that are worth your time. Try not to take your loved one’s anger personally. He or she may direct feelings at those with who she is closest. The stress, fears, and worries may come out as anger.

Make the best of life after cancer treatment. Together my wife and I recognized the importance of being with our children. We planned a future family trip, and our motto remains to never miss an opportunity to be with our grandchild.

The role of a caregiver may not be an easy task, but being there for a loved one at a critical time is most rewarding.