Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “June 13, 2020”

We Are Not Alone

When I was diagnosed with Hodgkin’s Disease (it was called that back in 1988, not the less scary but more cancer sounding Lymphoma used today), there was no internet, at least for me.  I did not even own a computer, or a cell phone.  I am pretty sure I did not even have a cordless phone in my house.

I was on my own.  Sure, I had my wife.  I had my doctors.  I had my nurses.  I even had a therapist.  But I was on my own.  I saw other people in the waiting rooms, and I assumed they were there for cancer, though not sure what type of cancer, or even if by some chance, it could be the same type of cancer as me.

In 1996, I got my first computer, and learned about the internet, and the many things that it could do.  And of course, me being the investigative type, I started to research Hodgkin’s Disease, and soon found out, there were “groups” that talk about it.  To understand how primitive a concept this was to me, would be like saying the beginning of Facebook, came from the use of a chalkboard.  Don’t know what a chalkboard is? Look it up.

There were two groups that I found myself curious about.  They were called “list serves”.  You post a message, and then other group members respond to your message.  Not only were you able to learn about what you had been through, you could learn what others had been through as well.

This list serve still exists today.  I was invited to this list by another long term survivor, who is no longer with us.  And in spite of my denials that the list was not meant for me, because I did not have the health issues that those on that list had, I was and still am a member of that list.  In 2008, this list would mean the difference to me, with life versus death, as I discovered that I had issues related to my Hodgkin’s treatments eighteen years earlier.  I only knew about them because of the information shared by the people who belonged to this list.

Seeing their words was not good enough.  I wanted it to be more “real” and to do that would mean meeting them in person.

I would arrange several gatherings such as this one pictured, so that other Hodgkin’s patients and survivors could get together, to see, that we in fact, were not alone.  And they literally came from all over the world, England and South Africa.  I tried to do these annually, but I wanted it more often.  So, much to the frustrations of my ex wife, nearly every trip I made, I announced that I was making my trip on these lists, and if anyone would like to do a sort of mini-gathering while I was in their general area, I would make it happen.

These are just some of the several hundred other Hodgkin’s survivors I have met over the years.  But today, it has a whole new meaning.  And every long term survivor of Hodgkin’s Lymphoma will agree.

The late side effects from our treatments have haunted many of us for years, with no reasons or answers for the many issues we have to deal with.  Doctors were never trained about our issues.  Medicine had not researched our issues of survival, because technically, no one gave a shit about us after we passed our five year mark.  We were on our own.  And without knowing about these list serves, being alone is devastating.

But because of those lists, I found the help that no one else was able to give me.  With the help of that same fellow survivor who encouraged me to participate with ACOR, I found the doctor that would not only save my life, but help me live it.  Hodgkin’s survival was his specialty, for decades in fact.  Together, we have a deal.  He will do his best to make sure that I see my grandchildren, something I hope is a long way away.

Fast forward to the turn of the century, and introduce Facebook.  All kinds of groups had formed when it came to Hodgkin’s and late effects, even some “issue specific.”  What it meant was, more people to meet.  What it meant was, more people like me.  What it meant was, I was not alone.

There are those in my survivorship that have had personal impact on me and the directions that I have taken.  While I have personally met hundreds, if not a thousand by now, I have spoken with thousands more.  But another influencial survivor would come along and be a moral compass for many of us.

I spoke with Dolly, a fellow survivor many times, but never had the pleasure of meeting her in person.  She was a kindred and free spirit.  But she was also quick to “knock some heads together” the minute two survivors might not play nice in the sandbox.  She was literally all about peace, love, and happiness.

Prior to her passing, she made it known, that she would like to see someone, some organization, step up, and provide the help that our fellow Hodgkin’s survivors needed, information, resources, support.  And just before her passing, the concept was born.

I won’t go into the nuts and bolts of Hodgkin’s International, because it deserves a post on its own and what it has been doing.  The fact is, Dolly’s dream has come true.  And the reason I mention this, is an example that occurred this morning.

I cannot produce any photos, because I do not have rights to do it, but this morning, a web meeting was arranged through HI, with 100 fellow long term survivors of Hodgkin’s Lymphoma.  Lengths of survivorship ranged from twenty years to FORTY-NINE years!  We got to introduce ourselves to each other.  Put faces to names.  And most importantly, see and know, we are not lone.

Thank you everyone who has made this day possible.


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