By Tina M. St. John, M.D., author of “With Every Breath: A Lung Cancer Guidebook”
Coping With Lung Cancer
Each day in the United States, the lives of 615 men and women and their loved ones are forever changed when they hear the words, “You have lung cancer.” 1 As with any potentially life-threatening disease, a lung cancer diagnosis plunges both the patient and his or her loved ones into an unknown and foreign realm filled with uncertainty and fear that uniformly challenge even those with the most robust coping skills. That uncertainty and fear are usually compounded by a paucity of medical knowledge and unfamiliarity with health-related terminology.
Among numerous other needs, people with lung cancer and/or their loves ones commonly strive to regain a sense of control and cope with the diagnosis by seeking information about the disease, treatment options and day-to-day management strategies. 2 While there is a plethora of user-friendly information available for people facing other cancers, lung cancer patients and their families remain somewhat marginalized because of the persistent stigma associated with the disease. Despite the work of several dedicated advocacy organizations, the resources available to lung cancer patients and their families remain far fewer than those available to people with other types of cancers.
I wrote “With Every Breath: A Lung Cancer Guidebook” to help fill the unmet informational needs of people living with lung cancer and their loved ones. It is written from a unique perspective, as I am not only a medical doctor but the loved one of someone who has died of lung cancer. A short 15 months after diagnosis, my young husband died of lung cancer, leaving behind a wife, a beautiful 3-year-old daughter, a loving extended family and an army of devoted friends and colleagues. Having an understanding of living with lung cancer from the perspective of both a medical professional and the loved one of someone with the disease, I sought to create a comprehensive book to help others facing the same challenges our family faced. The book is intended to be both a source of understandable information about lung cancer and, by extension, a source of comfort and support for those walking a very challenging road.
When Words Aren’t Enough
One of the most difficult aspects of writing “With Every Breath: A Lung Cancer Guidebook” was trying to make medical concepts understandable, especially when trying to conjure up images in the mind of the reader with words alone. I quickly came to the conclusion that in some cases, words just aren’t enough — that nothing I could write would come close to communicating as effectively as illustration or image. It’s much easier to understand how lung cancer spreads and causes tumors in the liver, brain or bones when you can see an illustration of the metastatic process. The importance of a mediastinoscopy in lung cancer staging is readily apparent when you are able to visualize the relationship of the lungs to the mediastinum.
I turned to Nucleus Medical Media to address the need for lung cancer-specific images and illustrations. In every instance, the image or illustration I requested complemented the text perfectly, bring the words to life.
Demystifying Lung Cancer
Readers of “With Every Breath: A Lung Cancer Guidebook” routinely comment on how well the book “translates” the medical aspects of the disease into concepts they understand. The illustrations and images in the book facilitate that understanding and comprehension. As readers see everything from what lung cancer looks like under the microscope to an intravenous chemotherapy infusion setup to how blood is oxygenated in the lungs, the “mystery” of living with lung cancer decreases, along with some of the fear and disorientation of being thrust into the world of cancer treatment.
Real-World Impact: Touching Lives
The goal of producing “With Every Breath: A Lung Cancer Guidebook” was to make the lives of people living with lung cancer and their loved ones just a bit less difficult by providing them with useful information for all stages and phases of dealing with the disease. Messages from readers demonstrate that the book has indeed touched their lives in a positive way.
Cathy S.* turned to the book after her mother was diagnosed with small cell lung cancer. “We didn’t know where to start, what we were dealing with or how to begin to help her make decisions. It was all coming at us so fast.” Cathy and her siblings initially used “With Every Breath: A Lung Cancer Guidebook” to gain an understanding of their mother’s diagnosis and her treatment options. Cathy remained in touch throughout the course of her mother’s illness, using different parts of the book as her mom’s disease progressed.
Danielle R.* is a community outreach nurse who cares for a number of lung cancer patients. She made contact with a request to get a number of copies of “With Every Breath: A Lung Cancer Guidebook” for her patients and their families. “Many of my families don’t have computers in their homes, and your book has so much information they can use every day.”
When Terry C.* learned her grandmother — her primary caregiver growing up — had lung cancer, she was devastated and terribly worried. Her grandmother was in her late 70s, but generally healthy “other than having lung cancer,” as Terry wrote. She was concerned that treatment might be too hard on her grandmother. Terry related that the book helped her family understand the pros and cons of treatment versus supportive care, which is ultimately the course of care her grandmother chose.
* Names have been changed to protect readers’ anonymity.
“With Every Breath: A Lung Cancer Guidebook” is provided free-of-charge to people living with lung cancer and their loved ones, thanks in part to the generous donation of the use of images and illustrations from Nucleus Medical Media. In addition to electronic access, “With Every Breath: A Lung Cancer Guidebook” is available in community libraries and patient libraries of cancer care facilities throughout the United States and Canada. The book has been translated into Italian, and requests for the book have come from people as far away as Australia.
1: American Cancer Society; Cancer Facts & Figures 2014.
2: Howard S. Friedman (ed.); The Oxford Handbook of Health Psychology