by Tony Crispino
Sharing is caring and before four years ago I had no idea how valuable that little piece of information could be. Until then I was still an invulnerable 44 year old male with a strong career and seemingly everything under control.
Then it happened. In October of 2006 I found out how little control I truly had. What I did have was an unexpected diagnosis of prostate cancer.
My final confirmation that I had a serious case of the disease was actually December 22. I had no idea what I was going to do and my wife and I were in shock. I remember very little of the family visits over the Christmas holiday ~ something else was on my mind. After a tearful evening with my family, I was still up around 2:00am on December 26th. I was searching the Internet for anything that could help me understand what my diagnosis truly meant.
I wanted to talk to somebody who had been through the same feelings I was having. In my Google search engine I typed three words ~ "prostate cancer chat". There it was ~ HealingWell.com. I joined the group that early morning and I haven’t quit since. Not only did I find my peers at 2:00am, but I found a host of men and/or their families posting. They were sharing valuable information. To me this would become my breakthrough moment. You may never feel more lost than when you get a diagnosis of the “Big C” and I needed to have some sense of control returned to me. I needed to find that stepping stone that would allow me to look forward again and I had found it.
My first several months on HealingWell I was getting acquainted with prostate cancer, selecting doctors, gathering information such as this one ~ the fact that my diagnosis was not a death sentence. Did you know that 70% of all people diagnosed with all cancers won’t die of cancer? Did you know that many diagnosis’ are even misdiagnosed? I didn't but I learned it here at HealingWell. I am still learning things here four years later.
My second year at HealingWell I was so encouraged by the support I had received that I decided to look into becoming an advocate for others that would get this terrible diagnosis. I joined several online boards dedicated to raising awareness and helping patients get to valuable information. I was also named a moderator for the prostate cancer forum. Eventually this even grew beyond volunteering at HealingWell. I liked the forum and support so much that I searched and found a live support group here in Las Vegas where I live. It was called UsTOO International. This is the men’s version of the Susan G. Komen Foundation for women’s breast cancer. And I found that I can also be a part of sharing in the live sense. Today I am the president of the Las Vegas chapter of over 300 members. I was selected by the group because they felt I was the most prepared to take over as my predecessor of 15 years wanted to retire. I was selected because of what HealingWell taught me about how to help people by being a part of a community that freely shares vital information.
There is a feeling of accomplishment that goes with that new skill. By being in an online support group I was able restore my confidence and my feeling of control that cancer attempted to take away from me. What goes on in our prostate cancer forum? Prostate cancer and it’s therapies will affect men in ways that many can’t even bring themselves to discuss. For example I was completely unable to have intercourse for over three years due to a chemical therapy that inhibited my ability to do so. Other men suffer from incontinence or depression. Most men are not prepared for what lies ahead but in a short time at HealingWell they will understand that there are peers. In "our" forum we see the newly diagnosed man get educated, the advanced case guy gets information faster than the doctors send it, and we are open 24 hours per day, 365 days per year for business and our members chime in from all over the world. Sometimes we share family outings, sometimes we share on how we met some of our forum brothers for lunch or a weekend gathering. Sometimes it’s about a recipe or a major sporting event. Sometimes we laugh and sometimes we can’t. One thing for sure ~ none of us are alone when in our forum.
This site is also about survivorship. There are some pretty tough fighters in the foxhole working together. Folks I am proud to be working with and I know that they truly do care for one another. We have mostly good outcomes at HealingWell in the prostate cancer forum. But this is cancer and there are challenges.
I remember when a very sweet lady showed up posting in regard to her husband, and he wasn’t the first such case we had seen, and certainly not the last either. She was posting with seemingly more frantic messages as a year wore on. Her husband had poor family history with prostate cancer and they took all of the necessary precautions including screening at the age of 45, well ahead of the guidelines at the time. But it was clear from her posts, that something was seriously going wrong. Her final post was to let us know that her 51 year old husband was no longer suffering.
I think our whole forum cried that day.
We won't see that very often in our forum, and I thank God for that. Typically we are a group of well educated, well informed patients working together sharing our experiences. We have proven time and again that there is multiple ways to be a survivor and a winner after a diagnosis of cancer. We have proven that there is a sure way to love, help, and support each other...
It's by coming together...right here at HealingWell where sharing is truly caring...
Tony Crispino is a former moderator at HealingWell and is involved in many volunteer efforts to help others dealing with Prostate Cancer.