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What Cancer Survivors Wish Others Understand

Cancer took my smile away, but only for a while. Helping others understand what a cancer diagnosis is like will help improve the experience for everyone.
PUBLISHED October 11, 2018
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.

When I first discovered what it was like to have cancer, I felt like my smile had been permanently wiped off my face. I wished doctors and loved ones understood all the things that I was feeling. It seemed like the nurses and physician assistants were looking more at the whole picture of me, not just the woman who lost her smile or just the cancer. Of course, insurance plans often allow nurse practitioners and physician assistants more time with patients than they allow for doctors. I hope that will change over time.

Newly diagnosed cancer patients have a ton of questions. I tried to write my questions down as they entered my brain. Next, I asked the oncology staff my questions as quickly as I could. I knew the oncologists were busy. I understood I wasn't the special snowflake. Still, it seemed like there were sometimes too many breakdowns in communication between the patients and the medical staff.

This disconnect was especially upsetting when two different doctors on my "medical team" gave me conflicting answers to the same question. Why can't they communicate with each other? This lack of consensus can be frightening for the cancer patient. According to the American Psychosocial Association, integrated care is defined as, "Collaboration between health professionals to provide complete treatment to patients and improve overall well-being." I hope integrated care will improve this disconnect. I wish more clinics had pharmacists that work closely with doctors, too.

It still seems strange that people wrestling with a fresh cancer diagnosis are in charge of creating their own medical team. In a way, it is a freedom we can be grateful to have, but it can be stressful and time-consuming to get that team selected and put in place. That task creates even more emotional angst, not to mention worry and lack of sleep. It is hard to smile while working on this task.

It is fairly common for newly diagnosed cancer patients to experience emotional distress including anxiety, worry, fear and lack of sleep. I remember feeling like the doctor had limited support for these concerns. Anxiety medication, sleeping medication, an oncology talk therapist, and oncology support groups are all helpful. What I also desired was compassion from my medical team – recognition that cancer is tough stuff.
Finally, I wound up seeing an oncologist who was also a breast cancer survivor. If I would get tears in my eyes, she understood and accepted my feelings. Yes, people cry when they are afraid of dying, and that is OK. Sometimes cancer survivors just need a few seconds of understanding.

When my hair (most of it) grew back, the doctors and I remained vigilant, but sometimes our circle of friends and family forget about my experiences because I was no longer bald. Hear this dear family and friends: It still is OK to ask about our cancer. Did you read a good article? Hear about new research? Please feel free to inquire now and again. We cancer survivors will be cautiously optimistic, and we understand that we will be waiting and watching for the remainder of our lives. That is just how cancer works.

In the end, we live in a busy society and anyone can become preoccupied or distracted. We are all human. As cancer survivors, I think we can help educate the people around us about cancer survivorship and we can help those who were diagnosed after we were. I think time, emotional coping tools, and helping others all help me find my smile again. What is helpful to you?



 

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