When you're losing your cancer support group, take it mobile

I was the only person at my support group again this week. Our facilitator was there, of course. She’s always there for us. Through the winter, about three times in a row, I showed up at 6:30 and left by 7 after talking to her for a few minutes. And then, I stopped going.

Af first, it was like found time. Tuesday evenings were free. I had time with my daughter, time to work out, and walk the dog.

But the loss of the group started weighing on me. Since being in remission now for a few years, I’ve begun to feel more confident about my future. I told myself I was going to the group to give back and to be there for others.Slide1

People need to tell their stories, and they are hard to listen to if you’re outside the community. Friends and family do the best they can. There’s nothing, though, like telling a group that knows.

One of my friends in the group, who has metastatic cancer, participated in her employers’ wellness campaign. Sponsored by their insurance company, people were to exercise, attend workshops, keep records of their food, and so on. You got points for what you did. The person who collected the most points won a big prize.

My friend with terminal cancer won the wellness prize. Only a support group can so thoroughly enjoy the irony of that story. We roared with laughter. She is on maintenance chemo and will be until she dies from her cancer. But she won the wellness prize at work.

Still, there’s a hollowness in that laughter. There’s that core of fear and anxiety just under the surface of mirth. Maintenance chemo works until it doesn’t. You can switch to another one, but you run out of options eventually.

And when you switch meds, who knows what side effects you’ll face? Losing your hair, losing your energy, losing your appetite. Eventually, it’s all about loss.

I’ve learned to be a good listener. I am able to hear the stories and share the sadness or fear or joy or humor. I hope I give back something that matters to these people who have given so much to me.

But, I don’t go to my support group just to be there for others. I go there because I need them. I need to know how they are. I need to tell them some morngings I still wake up and run to the bathroom to see if there’s blood in my urine. I need to share my frustration with them that my insurance company is refusing to cover $6000 of routine testing.

I need to see their faces, feel their hugs, hear their comfort and their anxiety. I need to know that I haven’t lost them.

When I first started going to this group there were about 12 of us. Six have died, most within about 12 months of each other.

I’ve always heard that grief has an element of anger in it, and I suppose I’ve felt anger during the grief process before. I felt deep anger about the doctor who caused my mom’s death, but I don’t recall feeling angry toward my mother. Maybe I’ve just forgotten.

Lately, I feel anger towards the people in my group who have died. I feel abandoned by them. Sometimes I think, “Damn you, MK. Why did you leave me? I need you.”

It’s so completely irrational. Dying of cancer isn’t a choice. None of these people left voluntarily. Their deaths are about so much more than my need of their support.

I think the anger is coming up now in part because one of our group is sick again, with a new cancer. She’s had chemo five times before and has always had a good response, but this time it’s wiping her out. She needs us right now, and she can’t get to the group because she can’t get out of bed.

I’m worried. I’m tired of seeing people I love suffer. I’m terrified of losing her. She’s always been the person who gives me push back, who demands that I find the silver lining, who nudges me toward hope and acceptance.

So, it’s a new day for our support group. I’m learning new ways of supporting people. Like going to their houses, texting them, reaching out, giving rides, waiting until they have the energy to have company.

It means that I go to them rather than to the Cancer Support Center. It means that we aren’t just people who show up at a group meeting. We’re friends. We’re connected outside the walls of this place.

Our support group is one-to-one in someone’s kitchen. We’ve taken the group mobile.

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Filed under: Cancer, Uncategorized

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