When I was first diagnosed with brain cancer, lots of people suggested support groups. I cringed at the idea (based on my own avoidance of ‘joining’, rather than personal negative experience). But as I cringed, I simultaneously wondered what other people with brain cancer experienced. Entering the world of social media and starting this blog I’ve connected with people who are survivors, caregivers, advocates, and researchers. Through those connections I’ve met some amazing people and have learned a lot. But I feel like I still remain on the fringe. I’ve spent a lot of time thinking about why I’ve been so reluctant to join a support group – traditional or virtual – or become a more active advocate for brain tumor research funding.
I heard someone once describe attending a traditional brain cancer support group and realizing that they had NOTHING other than a tumor in common with anyone else in attendance. They got very little value out of the experience. Everyone was older, more debilitated, more pessimistic, more ‘terminal.’ Just…more.
As I read more about gliomas (mine was, and could be again, a Glioblastoma Multiforme – Giant Cell Variety. Super Size me!) and other types of brain tumors, I realized that every one of our experiences is unique to each of us. It depends on what kind of tumor we have/had. The number of different types of tumors is astonishing as is the wide range of people afflicted with them – brain tumors are broad and indiscriminate. Where our tumor is/was located in our brain determines what symptoms we had prior to diagnosis and which symptoms we still have or develop after surgery and/or treatment. Some of us suffer from seizures, some don’t. Some have minor to severe motor control challenges, with or without pain. Some have short-term memory loss. Some have complex and frustrating speech difficulties – unable to get the words from our minds to our mouths or our fingertips.
Our experience also depends on whether the surgeon was able to remove a percentage, all, or none of the tumor. What treatment program we’re on and how our bodies react to radiation, chemotherapy, and other medications plays a significant role in our experience. Two people can have EXACTLY the same treatment – doses and all – and have completely different side effects. A big factor is also what our general state of health was before diagnosis – in all manners of the word ‘health’, mental and physical, including our age at diagnosis or recurrence.
Our spiritual beliefs and social support systems and how they bolster our strength, or deplete it, significantly impacts our resilience and optimism. What information we were told, or found, about survival statistics and how effective we were at pushing those statistics into the dark recesses of our traumatized minds if our tumors were malignant and ‘advanced’. So many variables impact our individual experience that very few of us have multiple elements in common through those experiences.
Even with all of those differences, we all have one big thing in common – brain tumors. But we also have fear, anxiety, treatment plans, MRIs, and with any luck, hope.
If I spend too much time on the various social media outlets for brain tumor fighters – just browsing resources for information – I hear more stories of loss than of survival. Even knowing that I’m doing well and have a good chance of becoming legendary, I still know in the back of my mind that the tumor could come back and render me mute, make me incapable of making short-term memories, or kill me at any point. Each time I read a story of someone else who was surviving and leading a vibrant life suddenly losing their battle with the beast, I have to fight not to curl into a ball and cry for all the hope that was just sucked out of me. I need to hear stories of survival so that I continue to believe that long-term survival is possible and I WILL be legendary in my survival, that I WILL be around to see my children grow up.
When I think about support groups or being an active advocate for brain tumor research, I realize that we can all find something that helps to keep us moving forward, fighting the fight and finding camaraderie in our unique and common experiences. Yet, I’m still reluctant to fully join in. I’ve learned that I want to live as much of my life as possible with cancer being a sidebar rather than a headline – while I still can. I don’t want my brain tumor or the experiences of others or the fight for this drastically underfunded area of tumor/cancer research to take over my life. I want to put as much of my energy as I can into my children, my husband, my extended family, my friends and my pets. I’ll continue to write and speak to my experiences – my own version of therapy – and participate in the brain tumor community (the fact that there IS a community is still somewhat hard to absorb) on my own terms… for now. Everyone has to find what works for them and I know I’m not alone in my conflict to balance my desire to connect and my fear of being consumed by support groups, advocacy and social media. #btsm.