I realized, rather belatedly, that for all my indirect commentary about my in-person cancer support group, I haven't ever written a diary devoted to that topic. So here is at least a first pass on describing what cancer support groups do, what good they might be for you, and how you might find one that suits your needs.
Let's start with delimiting the field for cancer support groups. (Please note that at this time I'm discussing only in-person groups. Of course, there are many online groups but they operate quite differently.) They come in many different varieties, judging from the ones I've seen near me. They might be single-topic groups, e.g. exclusively for breast cancer survivors or lung cancer survivors. They might be for people dealing with advanced or metastatic cancers of all sorts. They might be for young adults with cancer, or for children with cancer. They might be for African-Americans with cancer--a recognition that it's not always comfortable for black Americans to be fully disclosing to white Americans. And so on. I haven't seen cancer support groups for GLBT survivors, but that doesn't mean they don't exist.
Importantly, there are also many groups sponsored for the family, friends, partners, or caregivers of people with cancer. As you might imagine, the goals and orientation of these groups will be very different depending on the characteristics of the people in the group. For example, the groups for family members tend to separate young children from teen children, not surprisingly. I have very little if anything to say myself about the groups for family, however, since no one from my household has ever taken part in one of them. That has more to do with their preferred coping modalities, and with jam-packed schedules, than with rejection of the concept out of hand.
I imagine that there are support groups that are self-run, that is, groups that have no designated facilitator. I've only experienced groups that are run by someone else, and from my vantage point I would surmise there are advantages to having a facilitated group. The facilitator can make sure that all people have a chance to talk; that no one dominates the conversation inappropriately; that we maintain focus on cancer-related topics and not the weather, or our kids' soccer games, or other important but extraneous concerns.
Before I describe in general terms what being in a support group has done for me, let me offer some suggestions for finding a well-run group. Mine is based in a local Cancer Support Community, an organization that grew out of the Wellness Community centers for people with cancer and their loved ones. Officially, the Gilda's Clubs around the country are also under the Cancer Support Community umbrella now too, but many if not most of the Gilda's Clubs have retained their original name. As I recall, when there was an effort to change it in one location, people were distressed that Gilda Radner, the brilliant comedian who died from ovarian cancer after whom these centers were named, has become so obscure. But apparently even this effort to memorialize her has encountered some limits. One can use a search engine to find Gilda's Clubs and their affiliates, but as far as I know there is no longer one single web portal through which they can be identified and located.
Let's look at what the Cancer Support Community says about support groups at their main website under Emotional Support:
Over the last 25 years there has been extensive research on the positive effects of support groups as a method of coping with cancer, improving quality of life, and in some studies — even increasing survival. Research has shown that support groups help reduce the three most significant stressors associated with cancer: unwanted aloneness, loss of control, and loss of hope. In fact, research conducted at the Cancer Support Community has shown that people who participate in support groups, either face-to-face or online, report significant decreases in depression, increased zest for life, and a new attitude toward their illness.
They do continue to say that they're not for everyone. I hope that it is obvious that I'm not discussing them here as a necessity, but as a possible tool for one to use. The more options one has to consider (within reason, I guess), the better, IMHO.
And before I get pushback on the extended-survival claim, let me acknowledge that this is still a matter of controversy. Early studies that seemed to demonstrate this advantage more decisively have been challenged, and (IIRC) few have replicated the most promising stats. My own personal sense is that they do no harm, and they can provide a lot of comfort and reassurance along the way. Improvement in that elusively-defined measure, Quality of Life, is worth something, too.
Edit: I'd like to add something here that clearly I have come to take for granted~! ALL the services that the Cancer Support Community and Gilda's Clubs offer, including but NOT limited to support groups, are FREE. For almost anyone with cancer, that is a HUGE relief, since everything else involved with cancer care is so expensive. So do keep that in mind as well when you are looking for a group--no reason it should cost you anything. (h/t to ZenTrainer for reminding me about this in her comment below.)
If there is no Cancer Support Community or Gilda's Club near you, then for an in-person group you might have some success asking around at your cancer center. Failing that, then you may be constrained to online options only. Or, if you're up to it, you could see about starting your own support group.
Please join me after the jump for a few words about my own experience with a group. While you're making the transition, please remember that 1) this is an Open Thread and 2) your comments on your own experiences with support groups will be invaluable here, to me and the others reading tonight.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
I've participated in my own in-person support group for nearly four years now. I found it on my own, I think. My cancer center personnel were not terribly helpful in suggesting any off-campus resources of any kind.
Before I joined the group, I had a conversation with one of the staff, and I was asked to read and understand their version of a confidentiality agreement. Of course, as they acknowledge, there is no real mechanism for enforcement. But to announce an expectation of confidentiality, along with mutual respect for each other's privacy, seems to go pretty far without external sanctions. I haven't had any concerns about what I've shared myself, and I don't think I've ever said anything outside the group to violate those expectations.
Morning-after addition: Prompted in part by Betty Pinson's comment below, I'd like to suggest that if you join a group that doesn't seem copacetic, then don't just suffer through it. Raise your issues with the facilitator, if there is one, or with the sponsor; or leave to look for a new, more congenial group. Just because the group is free doesn't mean it should be without standards. People's boundaries should be respected; your needs should be addressed; the stability of the group AND the priorities of each individual member should be respected. A complex balance sometimes, but certainly achievable.
For the most part, we discuss our aches and pains, our grievances with cancer, and our concerns about our families and friends. It's about what you might expect, really. Nothing terribly mysterious about it. We've had discussions of other problems--for instance, I was more than relieved to unwind about my workplace difficulties when they were pressing--but usually what we talk about does have to do with how cancer has affected our lives. [I'm coming back into the diary to make a small self-correction: my "workplace difficulties" were directly related to having cancer, since that's why I lost my job. I want to make sure the record is clear here. And, one more, namely that we also spend a lot of time discussing the care we're getting--especially how to get the care we need. Thus, for example, I had a lot of encouragement when I was hemming and hawing about getting a second opinion. For our group, and I hope most others, the watchword is empowerment.]
Not everything is grim, by any means. On the other hand, there is sometimes a bit of gallows humor, I can't deny that either. I wish I could think of a good, anonymous example! I'll see what I can do. We have come to appreciate each other's foibles in the course of sharing our troubles and our joys, and so we can gently tweak each other, too, when the opportunity arises.
We've had people come in and out of the group over the years I've been a part of it, not only through death. In fact, that's not the most common way to leave; usually, people get well enough to decide they don't want to be in the group any more, which is a good thing.
At the moment, we are all white women, no one under 50, all (from what I know) heterosexual, and most but not all are Christian. Different class and work experiences, for sure. We have had black members pass through the group; a couple of men; a couple of lesbian/gay members. Not too many young adults. Some of us are terminally ill; others are in remission with good prospects; others are in treatment and facing uncertainty.
For all our similarities by demographics, the differences among us are real. We remain individuals and react very distinctively to the challenges we face. I suppose just about all of us are "brave" to the outside world.
But that's the real blessing in the end. We don't have to be brave with each other. We can talk about how much it sucks to be brave, in fact. And that, everyone does understand.
If you're so inclined, please share your thoughts about support groups. Have you done them? Have they been good or bad or indifferent experiences? We are all ears.