Esophageal Cancer Patient Support
Years ago when people were told they had cancer, they tried not toÂ tell anyone about theirÂ diagnosis. They didÂ not expectÂ patient support from anyone outside the immediate family. In fact, they often tried to keep theÂ diagnosisÂ to themselves for as long as possible. Â It was viewed as a death sentence.Â It was as if they had the plague and aÂ warning sign was posted onÂ their door: Â Stay away — cancer patient inside who is going to die.
Seeking patient support was often seen as a sign of weakness. Â Newly diagnosed patients would say, Â I have cancer and I must have doneÂ 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.Â Â I put my journey outÂ front for all to see. By sharing my experience with others, IÂ gainedÂ theÂ 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,Â 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 canâ€™t tell you how many times those words were my salvation. Â My daughters were also an important part of my support. TheyÂ spoke toÂ their Mom every day aboutÂ 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.Â I received patient support from Mr.Â Anastasio, Â Mr. Becker, and Mr. Dâ€™Ambrosio,Â fellow members of the Knights of Columbus Council # 5903. EveryÂ Tuesday and ThursdayÂ for six weeks,Â they droveÂ me into the Memorial Sloan Kettering Cancer Center in ManhattanÂ forÂ radiation treatment. On Monday, Wednesday and Friday, Ginny accompanied me whileÂ IÂ receivedÂ chemoÂ in one locationÂ and radiationÂ in another.
EveryÂ day we returned home toÂ phone messages from people who had called to check on me. It was difficult to keepÂ everyone up to date by phone,Â so we decided to create an email newsletter to let people know how I was doing. Â Once a week I would write an email to my patient support group. It began withÂ about 10 people,Â butÂ by the time IÂ had completed theÂ six-week chemo and radiation treatment it had grown toÂ 85.Â We kept it going, even when I was in the hospital for surgery. Ginny took over the newsletter when I was unableÂ to write and Â continued to send it out to everyone on the list.
When we began the newsletter, I received manyÂ responses thatÂ gave me additional strength to stay the course and fight this disease. As theÂ weeks wore on, however,Â I began toÂ receive fewer and fewer replies. Although theÂ list included family, friends and business associates in the U.S.,Â as well as business partners around the world, I began to wonder if people had lost interest and were no longer followingÂ my updates.
We decided to holdÂ a contest as a fun way toÂ engage the people who had become such an important source of strength for me.Â Â We asked thoseÂ on the email list to come up with a name for the chemo pouch I wore during the six-weekÂ treatment. The winning name submitted by my partner in our Australia office was â€œCappuchemo.â€ Â The humor was welcome medicineÂ for me,Â 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 wasÂ on myÂ journey through esophageal cancer. That’s why one of the goals of the Esophageal Cancer Education Foundation (ECEF)Â is to walk the journey with patients who have esophageal cancer.
FourteenÂ years have passed since I went through chemo, radiation and surgery, and we still advocateÂ patient support as an importantÂ element in a patientâ€™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 canÂ 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 aÂ book,Â Esophagectomy Post Surgical Guide Questions and Answers, that medicalÂ institutions have purchased to give to their patients when they leave the hospital. The book containsÂ helpful answersÂ for patients, Â addressingÂ issuesÂ they mayÂ encounter and how to deal with them.
We also provide patient support with a phone Hot Line for quality of life questions. We tell patientsÂ that if they haveÂ a medical question, they should call their doctors.Â But if a quality of life question is what they want to know about, please give us a call.
The support I receive from participantsÂ inÂ our conference calls, as well as patientsÂ we meet in person at theÂ start their esophageal cancer journey encourages me. And, of course, Ginny and the girls continue to be thereÂ for me. I am alive today, in part, because of the important part they played in supportingÂ me as I fought this disease.
Bart Frazzitta is anÂ esophageal cancerÂ survivor and the founder of the Esophageal Cancer Education Foundation (ECEF). ReadÂ moreÂ of his story here >