I first wrote about my support group here in July. 72 miles away, 19 older men, two younger men, and me. There are breast cancer support groups everywhere, but the closest oral cancer group is in York, PA. Oral cancer support groups are hard to find. My group is usually all male. Men make up approximately 75% of oral cancer cases.
Last night caregivers and companions were welcome so I asked Marc if he wanted to come. I was a little worried because I knew a couple of the group members hadn't been doing well at the last meeting. I didn't want Marc to worry about me getting that sick. To be more truthful - maybe I was worried about myself ever getting that sick.
Marc said he was happy to go. It turned out that the two guys I had been worried about didn't make it. One died last month and the other, only 32-years old, is in hospice care. His wife is expecting their third child next month. Unlike many of the guys who readily admit to living a risk-factor-filled smoking and drinking life, he was from a Mennonite community. He had never smoked. I wish him closeness with his family this month and pain meds that work. Hopefully he has relatives and friends who will make sure his young kids know what a good person he was and how much he loved them. Sometimes life doesn't seem fair.
Almost everyone at the meeting had a partner or adult children there with them. The topic of the meeting was "The Heart of the Matter: Nurturing the Survivor Spirit." The facilitator, a nutritionist at the York Cancer Center, drew a big heart on the board and asked how having oral cancer had changed people's hearts.
One guy felt humbled by all the support he had received. I put myself in that category, but I also said that sometimes I feel MAD to still have cancer and side effects from treatment. I can fall into, "This is too hard - why me?" A number of people felt that way, too. Job's plague of locusts in the Bible seemed easier to take on than tongue cancer. One guy had wanted to die, until his son shook him and said, "I don't want to hear my father saying that! Are you saying you want to leave me?" He began to choose reasons to live and credits his son with getting him to wake up. He feels much more love in his heart now and described the members of the support group as feeling like family to him. He has been cancer free for over a year.
Sometimes, too, I'll feel so sorry that I have this - like I have let people down who have prayed for me. Or like I have let family members down by not being able to get well yet. Like I have let my kids down by not being able to talk with them clearly. It's irrational - I'm doing the best I can - but sometimes group meetings are good for getting feelings out on the table and being understood.
Many people felt grateful at how much more they appreciate their life after having cancer and how they no longer let small stuff get to them. Another guy said he had become more empathic and kinder toward others, particularly people who are older and slower. He said he's been moving slowly while on chemo and radiation. Everyone got depressed at times and felt that was okay as long as you didn't let yourself stay there.
One guy's wife brought out a cake for him. It was his 59th birthday. It does tell a lot about the importance of being with others who know what you have gone through when you want to spend your birthday with them.
All in all, a pretty emotional meeting. God and life and death and anger and love inside of an hour and a half. I was one of two people whose cancer had come back since the last meeting. Another guy is participating in a chemo trial in Baltimore and hopes he will be helped. Actually, I don't know what he thought. His wife talked for him the whole time.
At the end of the meeting, the guys I have gotten to know gave me hugs and told me they know I'll be all right. One man who is my dad's age, told Marc, "You take good care of her - she's a special lady." Marc and I walked out into the parking lot outside of the cancer center and started to cry for a minute. A cancer support meeting can be a lot to take in. We were talking in the car, when one of the nurses who had been at the meeting knocked on our window to make sure we were okay. How do you answer that question? We are doing well all things considered.
We drove out of the parking lot and quickly put back on the Tom Clancy audiobook we had been listening to on the way over. Lots of intrigue, a high body count, and a complicated plot that requires full concentration was just what we needed. Sometimes diversion is the best tactic. You can't be obsessed with your health and life and death issues all of the time.
Today I'm heading to Longwood to take pictures and then to a neighbor's house for a Friday night party. There's a time to be serious and a time to seriously be at a party. This will be my first party post surgeries. To be continued....
Thanks for the bouquet, Mickey and Marie!
Lisa dear, having been with you to your support group I could picture it so well and I was crying with both you and Marc at the end. I have thought often of that nice Mennonite man and his pregnant wife. As for your letting people down, do not give that one another thought. You could never let any of us down--your words and your just being YOU fill us with admiration and love.
Posted by: Connie | 02/12/2011 at 11:53 AM
Indeed, you are a very special lady!! And, Marc is a special guy! Love you both, Sandy & family
Posted by: Sandy Jelm | 02/12/2011 at 04:39 PM
Sweetie:
It was really sad learning that the young Mennonite fellow was in hospice care. I remember him and his sweet wife and hoped for the best. It was good that Marc could go with you and learn how the members of your support group care for one another.
Love,
Mother
Posted by: Barbara Eldridge | 02/12/2011 at 04:40 PM
Your experiences throughout this process, especially with this last support meeting discussion, it's all so powerful.
I think the the opposite, rather than letting you down, I feel like you're the bravest person I know, and that we all fall short as a result. I'm glad Marc could be with you and experience your group's recognizing your courage to face all this.
love, hugs,
Ellen
Posted by: ellen | 02/12/2011 at 04:54 PM