Letters From Cancerland: Groups
I don’t do book clubs.
Don’t get me wrong. I like the idea of book clubs. But I am a terrible member. The last book club I belonged to was made up of five to six women whom I knew, all bright, articulate, avid readers. A match made in heaven, or so it would seem.
The very first meeting I attended, when we sat down together to discuss a wildly popular, best selling novel that I loathed, the discussion went something like this:
Member 1: “Loved it.”
Member 2: “Great characters.”
Member 3: “Well-developed plot.”
Member 4: “I couldn’t put it down.”
April: “I thought it was anti-Semitic, racist, and poorly written.”
Deep silence.
I lasted one more meeting before coming up with an excuse to drop out. I don’t think they missed me.
So what has this got to do with myeloma?
It’s the group thing. In this case, support groups.
Many people with myeloma have great support groups. I know this because I’ve heard about them. Good times, good friends, good conversations, and good camaraderie abound.
We have a multiple myeloma support group in the central Ohio region. It is the result of lots of effort and passion by a myeloma patient who took the group from proposal to reality in a few short months. The group is now three or four years old.
I don’t do support groups.
I don’t do support groups for the same reason I don’t do book clubs. I am a terrible member.
I was unable to join the support group for the first few years because the meeting date conflicted with our local free legal clinic, at which I volunteer. But in the start of this year, when I took a temporary medical leave from the clinic, I was free to attend the meeting.
It is undoubtedly a good support group. There are certainly wonderful reasons to attend it, starting with the other members and including the wide range of speakers they have. I was welcomed and made to feel part of the group right away.
So what was the problem?
The problem was I was once again the one at the table who wanted to kick her chair over with a clatter.
The night I went was a “let’s share our stories” night. That would have been great except for the two older men who sat there stolidly, arms folded, serving as Greek chorus. Someone would share his or her personal medical journey with myeloma, and the chorus would bark out judgments. “You need to take XXX” or “You need to call XXX Medical Center as soon as you get home.” When the newly diagnosed patient sitting next to me expressed his fears and concerns about the disease, they both turned on him and snapped “you need to fire your doctor immediately.”
Ouch.
I told my husband when I got home that night that I had very mixed feelings. On the one hand, I appreciated that for the first time ever I was in a room full of people who all have multiple myeloma. We all spoke the same language. That was a revelation.
On the other hand, I was uncomfortable throughout the meeting. It took me the 45-minute drive home and rehashing the meeting with my husband before I could pinpoint what had so bothered me.
I was uncomfortable because of the Greek chorus’s lack of listening, truly listening, to the stories. Maybe because of my legal background, maybe because of years of volunteer work where listening is a huge part of the service, maybe because of my current job as a mediator, I disliked intensely that personal stories, sometimes painfully revealed, were so quickly dismissed. In my world, that is disrespect of the highest order and is so foreign to my personal style that it overrode the common bond of being in a room with a group of people who spoke the language of myeloma.
I attempted group one more time. The Greek chorus was absent this time, but I also noticed something else. The newly diagnosed patient who had spoke of his fears was not there either.
He could have had a conflict. He could have been in the hospital or out of town.
Or he could have chosen not to go back after the reception he received the first time.
So I don’t do group. At least not that way. But that doesn’t mean I am without a support group.
I began this column in January of this year. My first one ran the very same day that my initial support group foray took place. Over the last 11 months, I have come to know and feel in print the friendship and support our Beacon community lends one another. Whether I am following Pat’s adventures with testosterone cream (admit it, we all read that one!) or reading a particularly poignant and heartfelt comment on my or another’s column, I am part of this connected, supportive myeloma community.
You’re my group. Like the support group I no longer attend, we too speak the same language, face the same issues, live in the same subdivision in Cancerland.
The difference is that when I read your comments, be it on my column or another, when I read my fellow columnists’ contributions, or when I respond to another column, I feel we are listening to one another. In our listening, we in turn honor each other’s journey with myeloma. That honor is what I did not find in the local support group, but find every time in this one.
Thanksgiving is almost upon us in the United States. For many, that means reflecting upon what one is thankful for. That’s easy: I’m thankful for the best support group ever, the one group in which I always feel welcome.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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April
Group dynamics can be challenging. Members of the group, perhaps feel impelled, to give advice, counsel that worked for them. However that does not mean that the advice is best for all. When we realize everyone has an opinion, then we can take it or leave it, depending on our situation.
I have been thankful for those varied opinions, because some are good and I may not have had the time or inclination to look in that particular direction. If I find the opinion is not useful for me, I toss it. There is no need to have negative feelings since we disagree with someone else's opinion or they disagree with ours. Ideas are exchanged and that could make a world of difference for our dealing with Myeloma.
As a result, I have gleaned a regimen of vitamins, diet, exercise, treatments that agree with me and make my dealing with myeloma easier. Without the input I may be in a worse place, so take the good, chuck the bad and enjoy the personal dynamics.
Nice article. I am totally with you. I have never been a support group person. Too many people going off in different directions and with different issues and agendas. I know many people love their support groups and that's great too, but I'll take a one-on-one conversation any day.
April, I understand completely. I also tried book club and a MM support group and just didn't fit. For some reason, group opinions just don't work for me. I find the myeloma journey too personal to discuss with strangers even if they also have MM. We all approach it in a different way, with a different attitude, and different sets of problems. I've never been one who believes you can ever know what another is feeling or thinking or feeling. I guess some of us take comfort in groups and some of us grow uncomfortable in groups. I too find the support that works for me in my on-line MM community.
I think that you have an interesting perspective on joining groups such as book clubs and support groups, which are not 'work related', but are more for one's own interest. Probably you might like the book club I have been in for decades. People laugh at us a little, since we don't actually discuss the books. It is a 'book exchange' group. I read a book, then I pass it to the next person. We each pay about $20 and buy a book for everyone in the group, and pass it monthly. There are only about 7 books and 7 meetings, but there are currently 12 people in the group - do the math! About two people at a time are reading the same book, and of course we don't want to give away the ending to anyone, so just talk about the books in general terms. The nice thing about it is having a coffee morning once a month at someone's home, and reading a selection of books that one hasn't picked out for oneself. I tell my book club ladies that I can write a column now because of all the books I have read over the years. Current book is by Vincent Lam, 'The Headmaster's Wager'. V. Lam is very famous for his book 'Bloodletting and Miraculous Cures', which was medical in content. So I look forward to reading it, although I probably never would have picked it out for myself to read!
I think it is the same with my support group. I have gotten into some interesting volunteering thru them that I couldn't have done on my own. They read the Beacon too, some of them! (I try to remember to send out my column thru our email, and also some people get the content directly from the Beacon that anyone can sign up for. I know I started to do that and now get all the articles and columns directly into my email)
So I have my online friends and my friends who I can meet in person. Happy Thanksgiving to you and your family!! Maybe we will meet someday too ... that would be really nice, April!
Our support group leader is wonderful in emailing MM links about teleconferences, news notes, video presentations, etc. And that is how I participate, at the computer in the privacy of my home. Sometimes I go to the actual meeting place & always return feeling frustrated after talking with patients -- everyone very different, some not fully understanding their disease, none like me, some doing better than I, and then I get discouraged. Better to remain a recluse in this MM dilemma for me! Suzanne
Spot on April. No one needs a Greek chorus; much better to have an open forum like the Beacon.
There are a number of reasons why I haven't done the Book Club thing, I guess in a nutshell if I really wanted to go to meet the people in the "club" I would do it on a one on one basis. Books can be discussed at anytime and in reality I am more interested in what the person has been doing than the nitty gritty on the book they have read. As for a myeloma support group (and I haven't really checked) I think the closest one that contains people my age is 1 1/2 hours away one way. If I felt it would be of benefit to me I would probably do it - that may seem selfish but I dont fancy driving 3 hours at dusk/night by myself (you never know when a kangaroo might jump out on the road). Anyway myeloma is such an individualised disease & treatment is too that it is only somewhere like the Beacon where you can get such a diverse response to posts.
All the best,
Libby
Yeah! Support groups SUCK, man!
Unless they give out free Butterfingers,
but still they can eat my shorts!
-- Bart S.
Central Ohio eh? Well hello from a fellow Buckeye! I frequent The James myself. As for a support group, there aren't any around here in Podunk and I'm not sure if I would fit in there anyway. If a Greek chorus were to raise a ruckus I would most likely say something they wouldn't like and I would no longer be welcome anyway. I guess it's best for everyone that there is NOT one around here! LOL!
Thank you for your musings, April. Support groups certainly vary, and I imagine introverts have a harder time being truly heard. In our MM monthly support group, which we had yesterday, I find that the variety of symptoms various members describe fascinating. We have one of the most diverse cancers, and hearing how members cope with physical, emotional, mental and spiritual challenges is very useful for me.
For me it is an exercise in compassion, not necessarily learning anything. As a physician, sometimes I offer advice, but only when I have something important to share that has not been tried, always encouraging discussion with their clinicians. My wife usually attends with me, and we have made some great connections with other couples. The caregivers present often have the most valuable insights.
The cardinal rules for successful support groups are focused listening, truly being heard without interruptions, and having a moderator who makes sure everyone who wants to speak has a chance. Sharing feelings, including fears, sadness and joys is encouraged. People usually leave full of gratitude for the experience, and it is a joy to reconvene monthly. So I encourage those who are hesitant to seek groups which operate in similar ways.
Happy Thanksgiving to all!
As always, I love reading the comments! Kudos to those of you who have found a solid group "in the flesh." For the rest of us, ehhhh (that's a shoulder shrug), we'll take our own paths. Mine includes lots of books (no clubs) and lots of baking. And, of course, the Beacon.
Hi April, I enjoyed reading your column so much. My husband and I can relate to you being an attorney. My husband was a court reporter in federal court and I did all of his transcripts for a total of 42 years. He retired four and a half years ago. We live in Spokane WA. I am the one with MM. Thankfully I am in a smoldering state and my last blood worked showed my IgG number was well within normal range. Pat featured my story a while back because MM patients enjoy hearing a "good" MM story once in a while and are able to rejoice. My heart goes out to you. Keep writing your wonderful columns. I am a fan of yours. We are leaving the day after Christmas to go to Tucson, AZ for almost four months. Getting out of the northwest snow and cold. Going to an RV resort down there and enjoy the sunshine. We have a fifth wheel camper. Keep your chin up. I know it is hard. Cynthia
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