The weekend was full of engaging speakers, networking opportunities, and meeting up with friends. While the location, Las Vegas, was a neurological nightmare with constant flashing lights and loud noise, the trip was well worth it. This summit was less about information, and more about meeting people from my perspective. If I had to describe the summit in one sentence, I would say that the event is a place for survivors from around the country to meet each other and learn about resources at their disposal. I wrote in my last post that I would publish a list of resources that I came in contact there, and I will, but in a separate post. Although the nerd in me prefers conferences full of data and analyzing research reports, I still found this summit to be a fantastic experience. I was able to meet several #btsm chat participants in person, and hear from brain tumor survivors what they think is lacking the most in their support groups, if they were even able to find one in their area.
One of the keynote speakers, Dr. Roni Zeiger, introduced the patient HUMDIS scale: How much does it suck? This method of patient pain rating emphasizes how much their symptoms interfere with their day to day activities instead of just circling a happy or sad face on a piece of paper. But, in reality, do doctors really have the time to have this discussion at length with a patient and discuss how their day is going? My neurologist most certainly does take the time to do so, but I haven’t heard the same from very many other patients.
The advocacy burnout session interested me the most. It addressed how to “stay in the game” when it feels like everyone around you is dying. The sense of “I can’t stop it” overwhelms many patient advocates, but as advocates, we have to remember that our job is not to keep people alive. One attendee said something that really resonated with me when it comes to feeling the need to spend less time with healthy family and friends, and more time with sick patients. As she put it, “These people need me right now because they are sick.” I’ve found myself thinking about patients more and more as the year has gone on, especially since so many teenage patients that I had known died this past year. The session mentioned something called compassion fatigue that I had never before took the time to think about. Compassion fatigue can be described as a preoccupation with an individual or cumulative trauma of others, and absorbing the trauma through your own eyes and ears. I heavily identified with compassion fatigue. Sometimes we, as advocates, feel like we must be failing because people are dying. This discussion brought up the importance of boundary setting between ourselves and patients because often times we are the emotional first responders. The factors that mitigate compassion fatigue are being highly present, sensitively attuned, well-boundaried, heartfelt, and empathetically engaged with self-awareness at its foundation.
The “cancer as chronic” session was beneficial for me as well. It confirmed my belief that everyone at times has or has had an expiration date mindset. It’s hard not to be frustrated with our medical conditions when we don’t get a break from regulating our bodies with medication, and managing our conditions as chronic. Additionally, the session reinforced that although it might feel like our responsibility, managing the emotions of friends and family surrounding a cancer diagnosis is not our responsibility as patients. The session addressed how minimizing the statement “I could get hit by a car tomorrow…” is, and other futile statements used to convey a “positive outlook” about living with cancer. I think that the session brought a sense of calmness to the group as we all realized that we were going through the same type of situations when living with a chronic condition, and that we all have dealt or are dealing with family members or friends who at times just don’t “get it.”
Information about Stupid Cancer’s 2015 summit was debuted in the closing ceremony. Cancer Con will take place in Denver from 4/24 – 4/26, and you can add yourself to the mailing list for updates.
As an aside – I turned 19 today. Here I am, still alive and kicking with the help of 336 pills of Keppra and 1,680 pills of Vimpat in the past 365 days.