Paul's Heart

“Paul’s Heart” – Still Going Strong

Wow! When I thought of this post, and trying to come up with the title, I never realized how literal it was going to be. Yet, here I am. More than 15 years since my emergency life-saving bypass surgery, four years since my second heart surgery, and approaching my second anniversary of my valve aortic replacement, my actual heart is in fact still going strong. But what I was originally referencing, was my blog, “Paul’s Heart”, which although WordPress I think has a glitch, I do know I started writing here more than ten years ago, but the calendar on the blog only goes back to January of 2013. “Paul’s Heart” was always about advocacy and support for cancer patients, survivors, and eventually adoption, and single parenting. But the start came many years before that.

I had heard about a program called “Cansurmount,” operated through the American Cancer Society. As I reached the end of my chemotherapy treatments in the Spring of 1990, and had been declared in remission, I was filled with a need to give back. And “Cansurmount” I felt would be an excellent opportunity to do so. The program trained cancer survivors and/or family members to provide one on one, peer to peer, cancer like-specific support and information to patients and their relatives. In other words, as in my case, Hodgkin’s survivor to Hodgkin’s patient. The belief was, what better connection could be provided than someone who has gone through the exact type of cancer to support someone else.

The program itself, actually originated beyond the American Cancer Society at Denver Presbyterian Medical Center in 1973 and adopted by the ACS in 1978. It came to Pennsylvania in 1981, and my particular area in 1986. With enough trained “visitors”, the hopes of the program were to match like-cancer with like-cancer. Referrals for a Cansurmount visitor supposedly could be made by anyone from doctor to family member, but generally only came from the doctor or oncology office.

To qualify, a visitor needed to be at least 16 years of age, have had cancer, and be at least one year having completed treatment. There was a six week training course to complete, and a whole bunch of other rules associated with the ACS to follow. Then came the tough part, knowing the difference between being a “friend” with a patient, and being a “visitor.” Some trainees had attended the training with the idea of helping cancer patients, but instead found themselves needing help themselves to work through their own issues, definitely not able to reach out to help anyone else.

As a Cansurmount visitor, we were there to provide medical information, not give advice. Anything said between us was meant to remain confidential. Our opinions were kept to ourselves (i.e. “that doctor has a bad attitude”) and we never gave out medical advice. This is different than confirming concerns about side effects of treatments or perhaps seeking out a second opinion. As visitors, we had a variety of information to give patients. The most important thing, the patient knew we were legit in our support, because we had been there ourselves. If a patient asked what I would do, I would explain that it was not a matter of what I would do, but what was best for them. The thing about a cancer patient, is every patient is different, even if it is the same cancer. Each patient has their own physiology and reacts to the cancer and the treatments differently. The list of “Do’s” and “Don’t’s” was quite extensive.

The most valuable quality of a “visitor”, was the ability to listen. It was one thing for a patient to express themselves, but another to know they were heard and understood. One entire training class was on these “Active Listening Skills,” followed up with “Reflective Listening Skills.” Mastering both of these techniques was the only way for a patient to know and believe, they were being heard.

A quick way to cause communication issues was with negative remarks, accusations, assumptions, directives, and cliches such as the popular “you’ll be fine.” While no one ever wants to give up hope, we were never to give false hope either. Speaking as a cancer survivor myself, I will tell you some of the last things a cancer patient wants to hear:

• “I know how you feel.”
• ” God never gives you more than you can handle.”
• “You shouldn’t feel that way.”
• “You’ve got to be strong.”

There are many more, and just as not helpful. I know that I have been told most if not all of them. I still get told things like “well, you don’t know that will happen,” or “you’re just being negative.”

We would spend many more weeks in training, learning medical terms, learning common issues among cancer patients, and the most difficult of all, dealing with terminal patients and communication with children about cancer. The remainder of the training concerned administrative things such as paperwork and such. And then, it was off into the field. My first referral could not have been any more difficult, a terminal young teenage girl, like me, having Hodgkin’s Disease. You can read the actual story I wrote about her, called “Jennifer’s Story.”

Jennifer’s Story

I continued in the Cansurmount program several years, after which the program just seemed to vanish. Even today, there really is no trace of its history searching through the American Cancer Society. I was told, referrals just were not being made because doctors were concerned about visitors giving out medical advice or visitors convincing patients to delay treatments. To my knowledge, this did not happen, at least I know not by me.

But then I discovered the internet and other resources to reach out to provide comfort and support. Two major web sites were email list serves. Then came Facebook. Facebook did what the list serves could not, put faces to the stories and conversations. There are so many different cancer and survivor pages on social media today, even subject specific with topics such as financial struggles or infertility and other cancer related issues.

This inspired me to begin my “Paul’s Heart” journey. Originally I was just testing the waters to see if I could actually gather all of my thoughts and put them into a book, so it only made sense to begin with a blog. Well, just like Elden the painter on the television show “Murphy Brown,” who never seemed to be near done painting Brown’s house, it has been twelve years since I started writing that book. And since, I have split that effort into three other books, also started. The problem for me was I did not know how to finish my first book. The subject is cancer survivorship. Was this problem intentional or subliminal? Would ending the book on my survivorship signal the end of the greater part, me? Nothing left to do?

I have been witness to many things over the last three decades. Diagnostics and treatments that I underwent, now considered obsolete. I am finally starting to see medicine realize that if you are going to “cure” a cancer survivor, survivors need care, forever, even if just for preventative concerns. And I am seeing better communication and information provided. In 1988, hardly anyone had even heard of Hodgkin’s Disease. Now called Hodgkin’s Lymphoma, and created by survivors of Hodgkin’s Lymphoma, an organization now exists, INTERNATIONALLY, to inform, educate, and support patients and survivors of Hodgkin’s Lymphoma, called Hodgkin’s International.

I am in the homestretch of ending my first book. I now have a conclusion I can use, without my story ending. If not too much changes after that, perhaps I can just do a second edition, or if there is a lot to add, then that could mean another book. In the meantime, I am going to continue down the path I started over 30 years ago, one way or another, supporting other cancer patients and survivors.