Years ago when people were told they had cancer, they tried not to tell anyone about their diagnosis. They did not expect patient support from anyone outside the immediate family. In fact, they often tried to keep the diagnosis to themselves for as long as possible. It was viewed as a death sentence. It was as if they had the plague and a warning sign was posted on their door: Stay away — cancer patient inside who is going to die.
Seeking patient support was often seen as a sign of weakness. Newly diagnosed patients would say, I have cancer and I must have done something wrong to have contracted it. I do not want to talk about it to anyone. Patient support is totally out of the question.
Well I am here to say that, in my case, I wanted the world to know I had esophageal cancer. I put my journey out front for all to see. By sharing my experience with others, I gained the strength I needed to fight this disease.
My Patient Support System
At the very core of my patient support system was my wife, Ginny. Throughout the chemo, radiation and surgery, she was always there. She would constantly tell me that she had a good feeling about all of this and everything was going to be OK. I can’t tell you how many times those words were my salvation. My daughters were also an important part of my support. They spoke to their Mom every day about how I was doing and what obstacles I was encountering. I knew they were thinking about me and praying for me.
My chemo and radiation treatments took me into New York City, a 100-mile round-trip each day, for six weeks. I received patient support from Mr. Anastasio, Mr. Becker, and Mr. D’Ambrosio, fellow members of the Knights of Columbus Council # 5903. Every Tuesday and Thursday for six weeks, they drove me into the Memorial Sloan Kettering Cancer Center in Manhattan for radiation treatment. On Monday, Wednesday and Friday, Ginny accompanied me while I received chemo in one location and radiation in another.
Every day we returned home to phone messages from people who had called to check on me. It was difficult to keep everyone up to date by phone, so we decided to create an email newsletter to let people know how I was doing. Once a week I would write an email to my patient support group. It began with about 10 people, but by the time I had completed the six-week chemo and radiation treatment it had grown to 85. We kept it going, even when I was in the hospital for surgery. Ginny took over the newsletter when I was unable to write and continued to send it out to everyone on the list.
When we began the newsletter, I received many responses that gave me additional strength to stay the course and fight this disease. As the weeks wore on, however, I began to receive fewer and fewer replies. Although the list included family, friends and business associates in the U.S., as well as business partners around the world, I began to wonder if people had lost interest and were no longer following my updates.
We decided to hold a contest as a fun way to engage the people who had become such an important source of strength for me. We asked those on the email list to come up with a name for the chemo pouch I wore during the six-week treatment. The winning name submitted by my partner in our Australia office was Cappuchemo. The humor was welcome medicine for me, and Ginny sent him cappuccino mugs from Tiffany & Co. as a prize.
Esophageal Cancer Education Foundation Patient Support System
I know how important patient support was on my journey through esophageal cancer. That’s why one of the goals of the Esophageal Cancer Education Foundation (ECEF) is to walk the journey with patients who have esophageal cancer.
Fourteen years have passed since I went through chemo, radiation and surgery, and we still advocate patient support as an important element in a patient’s esophageal cancer journey. ECEF focuses on the patient and provides multiple forms of support for them as they fight this disease.
We have monthly patient support groups that meet by conference call so patients can share issues they are experiencing with other patients. Knowing that there are other people out there just like them provides support and encouragement.
ECEF produced a book, Esophagectomy Post Surgical Guide Questions and Answers, that medical institutions have purchased to give to their patients when they leave the hospital. The book contains helpful answers for patients, addressing issues they may encounter and how to deal with them.
We also provide patient support with a phone Hot Line for quality of life questions. We tell patients that if they have a medical question, they should call their doctors. But if a quality of life question is what they want to know about, please give us a call.
The support I receive from participants in our conference calls, as well as patients we meet in person at the start their esophageal cancer journey encourages me. And, of course, Ginny and the girls continue to be there for me. I am alive today, in part, because of the important part they played in supporting me as I fought this disease.
Bart Frazzitta is an esophageal cancer survivor and the founder of the Esophageal Cancer Education Foundation (ECEF). Read more of his story here.
- Esophageal Cancer: A Brutal Diagnosis
- Esophageal Cancer Treatment: Chemo & Radiation
- Esophageal Cancer: Overwhelming Emotions
- Surviving Esophagectomy Surgery
- Esophagectomy Recovery: Relearning To Eat & Sleep