I consider my life split in half in that my life went through a major change when I was diagnosed with Hodgkin’s Lymphoma back in 1988 at the age of 22. Prior to my diagnosis, though I felt I was a considerate, well-mannered, nice guy, for the most part, I kept to myself, not necessarily go out of my way to help others unless I was approached. This type of behavior is common amongst young people.
But the very first thing that I wanted to do, following the completion of my treatments, was to help others take on their cancers, to deal with the many emotions they would face, to help them locate help with the many issues that I had experienced alone, knowing that my help could make a difference in dealing with the stress associated with diagnosis, treatments, and of course, life after cancer. I wanted to become an advocate for cancer patients.
Going through the cancer journey back in 1988, I did not have the internet. There was no treatment suite with televisions, dozens of other patients, food being served, entertainment, therapy animals, etc. There was no “bell” that I got to ring when treatment was done to celebrate. Though I tried to find others like me, it was an impossible task. And for those who are young enough to never know what life was like before the “selfie,” there are no pictures of me prior to treatment, during treatment, post treatment. I have nothing to document what I experienced other than the medical records I now possess, for reasons I am about to get into.
Approximately eight years after my remission, and now fully involved in a cancer counseling program called “Cansurmount” through the American Cancer Society as a volunteer peer counselor for cancer patients, I discovered the internet. I located a listserve of people who had only had Hodgkin’s Lymphoma (we called it disease originally, but it was unofficially changed because “disease” was felt to contribute to the stigma of having cancer as being bad). From there, I was contacted by Linda Zame, a long term cancer survivor. She had invited me to join her listserve, survivors not just of Hodgkin’s, but all cancers. I did not really feel I fit in, because I did not recognize myself as a survivor, only being less than ten years post remission. Again, she strongly encouraged me to join this list, and I did.
I was overwhelmed with what happened next. Story after story from cancer survivors, not about the wonders of life after cancer, but dealing with horrific side effects from their treatments. I immediately removed myself from this list, and explained to Linda, this was not a list I belonged to. I was fine. I was eight years out, and other than fertility issues and some permanent hair loss, I did not “fit in” on this list. I did not have these kinds of issues. Linda tried to convince me otherwise. I would join and unjoin several times over the next few years just to see if things had changed. But then in 2008, something did change, in a big way.
I will not go into the full story here, you can read it on the page “CABG – More Than A Green Leafy Vegetable.” I needed to have emergency heart surgery, caused by treatments from my cancer. All of a sudden, I was like those 400 people on that listserve that I did not think I belonged. Though I did not pay attention to her, Linda was trying to convince me, that although things might have been okay at that point, I needed to have the knowledge of what I had the potential to deal with. Doctors and medicine did not have it. It was a “few” patients that were advocating for everyone else with a new concept, caring for those who were given such barbaric treatments, that somehow lived past the magical “5 Year” mark. Medicine never bothered to study the long term effects of treatments because we were not supposed to live that long, especially after 5 years. But the truth is, there are over 12 million cancer survivors, and only a few hundred of us seemed aware of this problem.
Because of awareness, and that internet support group, I located one of the few clinics that handled patients with my particular issues, Memorial Sloan Kettering Cancer Center. At that point, all of the issues that had developed in my body over the years since my treatments had been diagnosed, more than a dozen of them in fact. I finally had answers why my body and mind, felt the way it did, when on the outside, I looked completely fine. While my issues cannot be reversed or undone, my life now is about management, managing the pain, managing the symptoms, preventing the increased risk of injury or illness.
But now my decision to advocate changed to include not only cancer patients, but also cancer survivors. As I got more involved, I would find myself getting frustrated with “fundraisers” claiming to help cancer patients. And there was nothing to help survivors. The only way someone was actually going to make a difference, was to personally make the difference. Sure, there are major charities that raise tons of money, and will highlight a few success stories to show their organization’s value, but in my experience, when I needed the help, several times, they were NEVER there for me. And I felt that there were too many in my shoes that needed help. So yes, I do believe one person can make a difference.
I ramped up my internet involvement to include patients and survivors to do what I do best, get information out. I wanted to help people find facilities that handled our unique cases, give people information on financial resources, to tell them that they were not alone.
Of course, one of the biggest resources for me was Facebook. I now belong to more than 2 dozen pages/groups, and combined with “Paul’s Heart”, I am trying to get the message out about survivorship and the needs that we face.
I can no longer do the things at the level that I once used to. There have been major changes in my life, and I have had to reduce my advocate activities. But I am still involved on the internet. Which brings me to my next point.
One of the groups that I belong to, has taken on a huge task, and I believe what I am witnessing will be a huge game changer, and yes, it will be because of social media, and advocates like me, trying to speak for those without a voice, guide people without a compass in the life of survivorship, to finally provide answers, to let them know that their issues are very real, and they are not alone.
I am not prepared to disclose this wonderful effort yet, because it is still in the planning stage. But unlike other ideas that I have witnessed over the years, this project has a clear focus, and an initiative and drive like none I have ever seen before. Even better, because of the attention it will get from Facebook, instead of reaching 400 on a listserve, the potential is to reach millions of other survivors who are made to feel like hypochondriacs because the shell of their bodies do not tell the same story as what is happening inside. I am extremely excited for when this particular group is ready to go live. To my knowledge, it will one of the only organizations to reach the millions and millions of cancer survivors. Medicine is finally starting to catch up to us, but not quickly enough as new patients are being followed more closely because they know the long term risks associated with treatments. But for the millions who are now lost, no longer followed up, have no idea what their bodies are going through.
Linda, thank you for convincing me I needed ACOR. And to my friends creating this upcoming organization, thank you, and keep pushing, you have the momentum and the support. I cannot wait to spread the word on this one.