The Patient from Diagnoses through Post Surgery Recovery
We have found through talking to many patients over the nineteen years from my esophagectomy that knowledge of what lies ahead is very important to the patient and their families.
We believe that patients who have knowledge and acceptance of the esophageal cancer process will produce better outcomes if they are aware of what lies ahead of them.
We believe that a patient will be more prepared for the surgery if he or she knows what will happen when they wake up in recovery.
We believe having a patient who has gone through the surgery at the same hospital can provide guidance and bring the patient to a comfortable level with what lies ahead and this, we believe, will produce a better outcome for that patient.
How do we identify that patient who has the experience and intelligence to be able to convey that information to a newly diagnosed patient? The key element is the ability to convert the question being asked by the newly diagnosed patient into an experience that the patient advocate has experienced.
As an example, when a newly diagnosed patient asks, how will my pain be after the surgery? My response is when I was in the hospital the nurse came in each morning and asked me to rate my pain from 0 – 10. They wanted me to walk a mile each day and do breathing and coughing exercises, so my pain level had to be in the middle to lower half of the scale for me to be able to do all those exercises.
Another question often asked is what will my quality of life be after the surgery? I respond to that question by saying to the patient, that I now play golf 3 times a week, and I can go out for a meal with family and friends. I may not eat all my meal, but that is what they make doggy bags for.
Well the question now is, how do we identify the patient who can come back and walk the journey with that newly diagnosed patient.
My wife, Ginny, and I formed the Esophageal Cancer Education Foundation (ECEF) in part: To walk the journey with patient who have esophageal cancer.
One of the services we provide to patients and their caregivers is a Conference Call Support Group Meeting. Patients from all over the country will call into a given number and access code to join in and participate. We meet once a month on a given evening for about one hour to discuss various issues that the patients are experiencing. With the help of two surgeon’s we have on the call, we will address the issues presented. This meeting gives patients an opportunity to see what other patients are experiencing and we find that it is a good help to all who attend. It gives them the feeling that they are not alone in this post-surgical journey and that they have a place they can go to address what they are experiencing and get good advice. WE need a disclaimer that says in part that all discussions had on the conference call must be cleared with their own surgeons and only act on their Doctors direction.
From these meetings we will be able to select a patient who can be the patient advocate that can talk to patients on a pre-surgery basis.
For more information contact:
President & Co-Founder
Esophageal Cancer Education Foundation
PO BOX 821
Manalapan NJ 07726