To Know You Are Not Alone
A little over two weeks ago, I got to attend an event that as a long term cancer survivor and patient/survivor advocate, only comes around every so often. By far, this was the largest endeavor for those especially with health issues similar to mine, caused by circumstances similar to mine – a diagnosis of Hodgkin’s Lymphoma and late developing side effects from the various and extreme treatments used to save our lives. One of my friends, also a fellow long term survivor whom I met many years ago previously, during the height of one medical emergency after another recently, described himself as a “unicorn,” because doctors soon learned that treating Danny, with the health crisis he was in, was like seeing a unicorn, a rare if not impossibility. Health issues like Danny has, also myself, and many in attendance at this gathering experience, literally filled the room with “unicorns.” But unlike his doctors, there were many advocates and doctors and nurses in attendance who “got it” when it came to the care of long term survivors. To them, we were not “unicorns,” but people who need help, care, and support.
I will say, that since the pandemic, except for a few rare occasions, I have avoided large indoor crowds, and when I have been inside, it was for a cause I felt worth the risks I was exposing myself to with my extra vulnerability to Covid19, such as my daughters graduations. I have functioned quite well over the last four years, continuing the precautions that have kept me from being infected, grocery shopping, picking up take-out food, going into offices, even going to see an occasional movie. But attending this event admittedly had caused me the greatest anxiety because I worried how strong I would be, to not let my guard down, and be exposed to someone unknowingly infected. This post is not about Covid19, but as soon as I felt comfortable enough, not only did the mask come off, but I did something I have not done in over four years, and that was only because the emotions of the moment were stronger than I could resist. I have been waiting to see so many of these other survivors for years, and to be reunited with others I have not seen even longer. Hugs were bound to happen, and did so in great abundance.
I think everyone would agree the weekend was too short, and not enough time to get everything done in between getting to meet everyone that up until that point, knew only through the digital world. Some arrived early, some stayed an extra day. But the main day was about the advocates who came to speak to all of us. There were personal survivor stories, lots of statistics, and doctors explaining a lot about the “why’s” that many of us long term survivors have the health issues that we do. I had a personal connection to two of the speakers, both doctors. For the first time, I got to hear how my one doctor found himself studying Hodgkin’s Lymphoma and survivorship.
I was also honored and humbled to join one of the two “survivorship” panels to answer questions alongside of my two medical heroes. I was asked to speak on advances in advocacy over the years. Many of my fellow survivors can relate to a time when we were on our own. So once the world wide web came long, and gave access to support via email, and then eventually social media among other resources, to end up in this ballroom gathered together at one great event, supporting each other, this is what advocates do, I would say the advances in advocacy have been as huge as advances in diagnostic methods and treatments for Hodgkin’s.
But I came to realize something. There is a difference between advocating on the smaller level, such as peer to peer, and the much greater scale such as the organizations that were represented and also spoke. They are the ones doing the research on our needs and speaking to our legislative branch of government for assistance financially and for other resources. And they are doing great things for us, though in the future. In the present, many need help now, and joining together with others in this hall, gave everyone a chance to share ideas, suggestions, and support. Most importantly, it is one thing to have a conversation online. It is another thing, to experience in person, that we are not alone after all.
There was a reality though, there were many who were not able to attend, some who had originally planned to attend. Long term survivorship is very uncertain. The room was filled with many of us, 30, 40, 50 years of having beaten a deadly disease, now living with the late side effects from the treatments that gave us those years. We do what we can to maintain good health, fix what can be fixed, but everyone expecting to see “tomorrow.” And unfortunately, there were so many, even recently, whose bodies could no longer handle any more trauma. This event gave many of us an opportunity to grieve with each other over the many other survivors passed over the years.
It really was a whirlwind weekend full of memories and information. Those who took part in planning and organizing it should feel proud of what they accomplished, and see the difference that it has made to those who atteneded, and the disire of those hoping for another opportunity in the future.
Paul's Heart 