It is nice to have an opportunity to write again about the value of cancer support groups. As many of you know, I am a huge fan of the right group for some people. There most certainly are people for whom even the best support group would not be a good choice. Anyone considering a group worries a bit about becoming more anxious and hearing stories about possible troubles that are upsetting. Of course this is a possibility, but the right group with the right leader makes it much less likely.
For example, if someone in one of my groups begins to talk about something that is clearly upsetting for everyone in the room (e.g. disease progression), I take a quick emotional temperature of the group and often say something like: "I am, we all are, so sorry to hear this. It is pretty scary, too." That makes it possible for everyone to own and accept those feelings. Most people do fine with this kind of discussion in a safe haven (which is the definition of a working group!), but there are folks who find it to distressing. Know yourself.
Most people feel that being with others in the same or similar situations breaks down the isolation and provides true companionship and often lifelong dear friends. Although we talk about the hard stuff, we laugh a lot, too. Here are some quotes from women who attend my group for women with advanced cancer:
• “In the group, we can be honest with each other. Believe it or not, we laugh a lot. We share information and teach each other. We can talk about anything and we do.”
• “In the group, I know that as each of us decides we’ve had enough, that decision will be truly respected. On the other hand, since we meet week after week, I also am confident that if they thought I was giving up too soon due to depression, they would be qualified to say so, and I would listen. In this group, I know I will be loved and supported no matter what happens to me and no matter what I decide to do about it. I know I will be heard and accepted no matter what. That is a priceless treasure.”
It is surprising how few ongoing support groups there are. Even in Boston, many hospitals have a list of theoretically available groups, but, if you call, you find that most are not actually happening. If you are thinking about a group, ask your doctor or nurse or social worker for a recommendation. If they don't have any ideas, you can look online at hospital's websites (often inaccurate for this information) or call your local ACS where lists of local groups are kept.
When you call to inquire about a group, in addition to finding out the time and place, ask about the membership and ask who facilitates the group. Many groups include a diverse collection of cancer patients, and that may or may not suit you. My own groups are narrowly defined so that members are sharing very similar circumstances. The facilitator is key; you want someone who is experienced with groups and whom you just plain like.
Finally, this is a good opportunity to advertise our new online support community. Check it out at: http://cancercommunity.bidmc.org
And here is a good article from Cure Today about the value of groups:
Cancer Is Lonely Enough, Don't Do Cancer Alone
Cancer is a lonely disease. This disease is a life-changing experience compared to the daily events of the family and friends that surround you. They want to help, and yet they just may not always understand what you are experiencing — at least that is how I felt. Cancer feels isolating and can be very hard during the moments when you just want to talk to someone who “gets it.”
As a two-time survivor who is over five and half years out from my first cancer, I would encourage newly diagnosed cancer survivors not to do cancer alone. Find someone, or better yet, multiple someones to discuss and process your cancer experiences.
Ideally, a live support group with real live fellow cancer survivors would be helpful, but know that the success of a group can also vary with the group leader and general dynamic of the group. If you don’t feel comfortable at the first meeting, you may find the experience completely different at another time. If you are in a larger metro area, it may be possible to shop around for a group that has the consistently has the right vibe to help you.
Not in a big metro area? You may find an online group that is supportive. An online group can be a good place to get opinions. Just remember that opinions are just that and everyone’s cancer experience and medical history is unique. Another thing to be aware of is this: There are not as many posts by people who are doing well as people who have worries.