Tonight I finally went down the rabbit hole and entered the world of support groups. It was brain tumor specific and I have to admit that it was a pretty sobering experience (at least when it started). There were 8 survivors plus 4 caregivers there and because I was the new guy, everyone introduced themselves first and that was actually a pretty difficult thing to sit through as most of the survivors had obvious deficits (problems speaking, and with memory, etc) and when it was my turn, I actually struggled to find words myself which gave me a lot of anxiety and made it even harder to speak (I have noticed that since the surgeries I sometimes have difficulty finding words especially if I’m feeling anxious…it’s super scary), but after I was done introducing myself I was able to calm down and engage in the conversation.
At the halfway point, the “caregivers”, as I learned is the proper term, (RuthMom came) split off and had their own meeting, so it was just me with my fellow survivors and a facilitator (who has been running the support group for 20 years) and for the first time I was able to be completely transparent and hear from people that know exactly what I’m going through. The biggest thing I learned is that everyone reacts to the Chemo differently (pretty much everyone that was there is being treated at UCLA by the way) and one thing that was encouraging actually was that all the young guys had grown their hair back. However, the most despairing news of the night was that one of the young guys, “Joe” (who is newly married with no kids, my same age, works in film, and is from the Seattle area originally) recently found out that he had a reoccurrence and discovered right before the meeting that it has grown 4 mm in the 3 weeks since. He had a lot of obvious anxieties and so the meeting became mostly about helping Joe find some ways to meditate, relax, and live in the moment to help him cope with all the unknowns. Please lift Joe Northrup (and I think his wife’s name is Erica) up in your thoughts and prayers as the grade of the tumor is still unknown and he is having some difficulty scheduling the surgery.
NOTE: This clip is one of my favorite vids from Youtube…I see it as my theme song as I take these steps to entering the Cancer community…it’s created by remix/mashup/dream pop artist “Pogo” who likes to bring films down to their essence through the use of sounds from that particular film fused with chill electronic beats…Welcome to the new art form of the 21st century (and like most art I can’t really articulate why I like it…I just do).
Overall, I was very grateful for the experience and will definitely go back.
Much love and gratitude,