I raced to my first cancer survivor support group today. I have been looking for one for a year. I got a call about a month ago about a support group forming and the facilitator let me know it was for active patients. I said thanks, sighed and moved on. She then left me a voicemail two weeks later to say the group would be starting soon. Thinking she had forgotten what I said, I did not call her back right away. When I did call she said that all the women she had contacted were also looking for survivor groups. Great. Finally.
I am in the car racing to my first survivor cancer support group. Racing for what? Anxious because talking about cancer in some way always brings up a lot of emotion. Hopeful that I would finally feel less alone? Maybe. This is why I thought I was going.
I arrive slightly late as I said I would be. Somehow I managed to get from the South End to Newton-Wellesley Hospital in 30 minutes. Door to door. I am always surprised that without traffic, Boston and it's suburbs are truly small. There are 8 people and a facilitator. I am late and anxious and instantly assessing their age. I want to know so badly I'm not even sure why, but I want to know. How old are they? We discuss parking and paying for parking cheaply for at least 5 minutes which begins to feel like an eternity. I know money is tight. But parking is $5. I just came from a city hospital where parking is $7 for the same amount of time and people have much lower income. I am surprised and already a little whiny in my head.
The facilitator asks us to say our name, where we live and the type of cancer we had. Thyroid, Head and Neck, Breast x 4, Cervical, Melanoma and me. She asks us to go around and say why we are here and what we are looking to get out of the group. Support, less isolation, surprise and disappointment that recovery is harder than being in treatment, not knowing what recovery, survivorship or rebuilding mean, redefining one's life, cognitive side effects. The facilitator then tells us a bit about herself. I have already discovered on-line she has a JD and is now a life coach, 30-year buddhist and committed to the environment. She introduces herself by saying she is in her 5th career as a life coach and facilitates cancer groups because she has been surrounded by it her entire life and that she herself has cancer. She proceeds to list the number of people in her life who have died and survived cancer and the number of people who have cancer now. She is from Long Island where there are extremely high rates of cancer. (I am only saying these details because she is the facilitator.) She tells us she has treated her cancer (Melanoma of the eye) exclusively with eastern medicine and alternative therapies often used in Europe and Mexico that are banned by the FDA. She says she is open to the use of Western approaches and believes we all get to choose. We all have already said we have exclusively used Western medicine (chemo, radiation and surgery). She says she does not judge others and hope we will not judge her choice of treatment. She explains Life Coaching for what seems like too long. She explains we can ask for this in the group and we can opt not to receive it if offered. I start feeling I'm listening to a live advertisement. I am a biased psychologist and I remind myself to keep an open mind. She is now moving on to her 6th career, she says, and is writing a handbook about alternative treatments for cancer.
I am intrigued because I have been reading a lot of books and watching a lot of documentaries about food based treatments of disease. I alos feel I know a little too much about her. I like, for lack of a better word, that she has cancer and has a different experience of treatment. She is calm. Sets ground rules. Is a good and respectful time keeper.
She tells us we have 45 minutes left and asks us to go around the room again and tell the group whatever we think is important about our cancer story that we want the group to know. We will have four minutes each. Though it seems like not enough time the parameters are good. She moderates like a journalist conducting a political debate. "You have one minute left." It feels rigid, but telling people when to stop in this setting also feels helpful. Talking about cancer often means a lot of painful, disorienting, rambling. People go around talking about what happened and what they are doing now. Many talk about identity and moving on issues. Clarifying what their life will be like. One feels confused by the question and has a hard time saying why she's there. I too am stumped by the question, but for a different reason. I no longer know "what's important" that I would want people to know about my having cancer. I'm not sure if I ever knew but I always had something to say.
The question and the answers I heard were clarifying for me. I don't identify as a survivor. This is not an identity label I choose to take on. This is not to say it is not apart of my identity. It very much is. I like the idea of rebuilding more than the idea of surviving. I don't have 20 years of an adult life before having cancer. I have 10 at most, and you would really have to be sticking to the legal and literal definition of adult to say I had that. It made it clear to me, simple as this may seem, that my cancer will affect, define and impact more of my life simply by the fact that it happened earlier. I won't know what ones' 30s, 40s, 50s or 60s feel like without already knowing what cancer is like. The stories remind me that I'm back to doing and dealing with my non-cancer life for the most part. I have fewer doctors visit, fewer health issues, fewer worries than before. Cancer comes up occasionally when I am sick and wonder - is this a headache, cold, back pain or a sign of cancer? When I am frustrated with my energy level, memory or what I feel my body should be able to do.
There is a level of anxiety in the room that I can't quite put my finger on and that I find uncomfortable. I wonder if I'm projecting, or really just feel, I'm not this anxious. Not anymore. I wonder, maybe I really did handle this very well? I wonder for the first time, how having cancer might be scarier at 62 than at 32.
The facilitator suggests something for us to think about for next time. What 3 things do I want to be different or "move to another place" by the time this group ends. Though I am feeling unsure that this is the right group for me, this feels like a helpful question. Why am I here? What is it that needs to be or feel different, for me to not feel like I need a group to fix something? As I spoke about myself I teared up at the same place I do every time. My life stopped. I was on my way. And it just stopped. My life is now on again. I am doing what I want to do. Everything in my life is better than it was. I am much less worried about the future. I am able to plan and not think about cancer nearly as much. I am still just sad I had cancer. Something about this doesn't feel fully articulated. It doesn't hurt the way it used. It's like a wound that won't close. It seems odd that just the idea of having cancer is what I find myself most sad about.
I plan to go back next week and see how it goes. My need to find folks my own age remains. I will do the best I can with what I have.