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Forming A Myeloma Support Group
By Peter Tischler, The North Texas Myeloma Support Group

This document has been written to provide guidance to anyone who wishes to start a support group for people with a common interest. Although the experience from which it originates is related to multiple myeloma, there is no reason why it would not be applicable to people concerned with other diseases.

The information provided here has been derived from the experience of forming the North Texas Myeloma Support Group which meets once a month in Dallas, Texas. This group supports the greater Dallas/Ft. Worth area.

The Idea of a Group

After being diagnosed with multiple myeloma in July of 1994, I joined a Cancer Dialogue group (an activity of the American Cancer Society) which met at our local hospital. During my first year with that group, one of the group members introduced me to a cancer magazine which had a resource page; on that page was the name and telephone number of ?The International Myeloma Foundation? - the IMF. I called the IMF, became a member, and learned that there was going to be an IMF Patient & Family Seminar in San Francisco in late 1995. My wife, Lucy, and I attended the seminar and learned that there was a very active local myeloma support group called the ?Bay Area Myeloma Support Group.? The idea of being able to talk with other people dealing with MM was of great interest to me. Lucy and I were very excited by the idea of starting such a group in our area, but it took almost a year before we were able to make it a reality.

  • Why Form a Group?

Since we already belonged to a Cancer Dialogue group which met weekly, we didn't feel a lot of pressure to start a myeloma-only support group. Yes, it would have been nice, but the task seemed somewhat daunting to me. How would I go about it? Until we went to the IMF seminar in San Francisco, I'd never even met another person with myeloma! I knew from talking with my oncologist that there were other people with myeloma in the area, but finding them and approaching them didn't seem simple. The reason for starting the group turned out to be a need to talk with people who had what we had and felt what we felt. The problem with our Cancer Dialogue group was that most of the people in the group had cancers for which there were either cures or good long-term remissions. I didn't find the sense of urgency in the others which I felt about my disease. I thought that I had more in common with people who have AIDS than with most other people with cancer. The only person I felt a strong ?cancer bond? with was a person with an inoperable brain tumor. We finally decided that we really needed a myeloma group.

  • Where to Start?

When I joined the IMF, I received the ?Patient-to-Patient Directory? which contained the names, addresses, and phone numbers of other myeloma people in my area. However, since this was like ?cold calling? in sales, I wasn't much interested in that as the initial starting point for our venture. I really wanted something more personal. The opportunity came from the facilitator of our Cancer Dialogue group who asked me if I'd like to talk with another person with myeloma. Our facilitator was a social worker on the oncology unit of our local hospital. She had met a myeloma patient who lived in Arlington and asked him if he would like to speak with me. He agreed and I got to meet Don and his lovely wife. Don had been battling myeloma for over five years and was in the hospital with yet another broken bone. In the course of my visits with Don, he told me that his neighbor, Woodie, had just been diagnosed with myeloma. I called Woodie and, subsequently, got to meet him and his wife Carol. Yet a short time later, our facilitator found another Arlington resident with myeloma on her oncology unit and I was introduced to Carl and Ailene. And so, there were three others!

I think that the important thing to remember is that a group starts with you and (at least) one other person. I'll discuss various means of finding members, but it all starts with you finding that one other person.

  • The Organizational Meeting

Once you've found that first person, you can start planning the formation of a group. Thus, you will need at least one organizational meeting. It will usually be quite informal: in somebody's home or over coffee somewhere. Our first meeting was at the food court of a local mall. Three couples met over coffee as we discussed how we were going to put a group together. I volunteered to call the people on the IMF Patient-to-Patient Directory and invite them to our first meeting. After some discussion, we decided to have our meetings on a Saturday morning, thinking that the most people would be able to attend at that time. So far that has proven to be a good meeting day and time with only a few people having to work at that time and a couple of others electing to sleep in instead of getting up early for our meetings. We selected the first Saturday of each month from 10 o'clock in the morning until noon for our meetings. I volunteered the clubhouse of our townhome complex for a meeting location as it was homey, conveniently located between Dallas and Ft. Worth, and free.

So, armed with a meeting time and place, I called everyone in the Directory who was located in my area. Four of the people I tried to contact had died; those were difficult conversations. A couple of other numbers were no longer working numbers. We finally did get four people from the directory to come to our first meeting along with four myeloma people from my hometown of Arlington, Texas.

  • Having a Myeloma Meeting

I must admit, here, that I assumed responsibility for making our myeloma support group meeting happen. I have been a facilitator in the business world and I had a burning desire to have a support group in our area - I was motivated! I have also organized and convened meetings of varying sizes in the past, so I was not working in the dark. I created a flyer which announced our meeting, and I put out signs to guide newcomers to our meeting facility. Lucy and I made a warm, cheerful meeting room with chairs grouped in a circle. We had name tags for everyone to use and a registration sheet. Lucy made sure there was coffee and goodies to nibble on; Lucy was as comfortable being the hostess as I was being the facilitator.

  • The Meeting Format

We didn't decide, initially, on a specific meeting format. It made sense to get everyone introduced to each other, so I introduced myself, made a few opening remarks, and we went around the room telling about our myeloma situations. I made it clear, from the beginning, that Lucy and I had myeloma - in my body. I wanted to make sure the loved ones had as much ownership of the group as the people with the myeloma. We have always encouraged people to bring family and friends to the meetings.

We have, from time to time, asked the group whether or not a guest presenter would be welcomed. We have had someone present guided imagery or visualization and another person came to talk about Eastern Medicine and Tai Chi. We will probably have more presenters in the future.

The format with which we've been most comfortable is having the existing members give a thumbnail sketch of their myeloma history for the benefit of the newcomers, and then have the newcomers talk about their diagnosis and status. We draw a lot of new people through our advertising of the group.

  • Promoting and Advertising

For the first few months we used computer generated flyers which gave the name of the group (voted on at our first meeting), the location, and the dates/times of the next three meetings. We placed these in doctors offices, treatment modalities, and hospitals. Later, one of our members created a two-color brochure or pamphlet and had 2,000 copies made. We began placing these around the area and they have attracted some more new people.

I considered having our group meetings announced in the local newspapers, but we have had to change our meeting dates several times and I've been afraid of confusing people who would expect to find a meeting on the first Saturday of the month when it's been changed to the second or third. Due to holidays and other conflicts, we have elected to change our meeting dates four times, already, in the first nine months of our existence. Our flyers and brochures have urged people to call our group contact if interested in attending a meeting. We do have a map to the meeting place on our brochure which makes it easier for people to find us once they decide to attend.

We have recently been fortunate enough to get a web page on the internet. A friend of one of our members is internet-proficient and volunteered to make us a web page which will attract more people to us over time. Also, our local myeloma support group is listed on the IMF's internet site as well as in their newsletter, Myeloma Today, which has a subscriber base of over 2,500 as of this writing.

So, we have attracted people by word of mouth from our members and friends, with flyers and brochures in waiting rooms and brochure racks, from the internet, through my participation in our Cancer Dialogue meetings, and through my social worker friend at our local hospital. In addition, one of our members belongs to the CanSurvive program of the American Cancer Society. He is called upon to talk with or visit people in the community with the same cancer he has - myeloma.

  • Choosing a Leader

Somebody has to make sure that meetings happen when they're supposed to, and someone has to lead or facilitate the meeting itself. These don't have to be the same person of course, and can be rotating duties, but without at least that much organization, the support group can quickly fall apart.

In our case, as I've already mentioned, my wife and I have taken these duties upon ourselves - somewhat selfishly, I might add. To be honest, I feel that we are highly motivated to do the job and do it well. My health has enabled me to assume the role of facilitator and Lucy is a born party organizer. In the early months of a new group, some of the work may have to be done by sheer force of individual personalities. Later, it will become important to ensure that the group will survive Lucy and me. We will have to make that transition to autonomy so that we are no longer needed (only wanted!).

Choose a person, or people, who really want to do the job. Try to find people who will be able to show up on a regular basis. It doesn't take much talent, for it's not hard to follow a simple agenda and let people do what they came for, anyway - share and learn. More about facilitating, later. As for setting up the meetings, that will take as much or as little effort as is desired. For a meeting in, say, a hospital environment, it would entail making sure that the room is available, open, and set up with chairs and any other equipment needed. Perhaps it might involve getting some coffee going or bringing some snacks. That's entirely up to the group. In a home or club environment, that might involve more setup or even conversion from some previous function to the meeting environment. Again, it's important to find someone, or several people, who really want to do what's necessary.

  • Before and After the Meetings

We found that by having meetings once a month, it was easy for people to forget about the next meeting. It can be difficult, sometimes, for me to remember over the span of a few days. Therefore, Lucy and I felt that it was important to keep the meetings in people's minds as much as possible. To that end, we decided to call all of the members several days before each meeting. This not only allowed the necessary reminder, but it allowed us to find out where people were at with treatment and life in cases where they would be unable to attend the meeting. I was able to report to the group on the relative well-being of any absent members.

Of equal importance to the upcoming meeting reminder was the post-meeting report. As a frustrated writer, I enjoyed writing the ?minutes? of the meeting in such a way that I would mention the names of everyone who attended (with highlighting) as well as those who could not attend. I added some humor and as much extended-family color as needed to make it more of a newsletter than minutes. There are some members who rarely attend, and even a couple who have never attended but wish to be included in our group family. For them, the post-meeting newsletter is their connection to others with our disease, and that's important to them. Each member gets an updated membership list with names, addresses, phone numbers, and e-mail addresses, as well as the newsletter.

  • Who Pays For This?

At first, there were no cost to consider. Well, that's not quite true: there were some costs which Lucy and I absorbed as our ?ministry.? There were hostess things like tablecloths, coffee, filters, tea, plastic cutlery, cups, sugar, and creamer; there were name-tags (we decided to do that from the first meeting); there were copying costs (for flyers and the newsletters) and, of course, postage. As our group grew, so did some of our costs, especially the copying and postage. Sometimes the mail-outs were more than an ounce and we were mailing to about 30 people. Occasionally someone in the group would ask who was paying and, when I said it was us, that person would send me a couple of books of stamps in the mail. But usually, we absorbed the cost.

After eight months, I decided it was time for the group to support itself and I asked the group to help defray costs. The group voted to pass the hat at meetings, suggesting $5 per family attending. This takes in about $60 per meeting which more than covers expenses. We can use any overage for group parties.

  • Controlling the Meeting

Here, again, I admit to unilaterally exercising my will. Although I've always made it clear that the group need only make it clear when they want changes, I decided to start with what I thought needed to be done. As an old hand at meetings, I understood, very well, the tendency toward chaos in a meeting without control. Where meetings take place frequently (weekly, in the case of our Cancer Dialogue meetings), a lot of latitude is possible. One, or even two, unproductive meetings will not ?ruin? a group. But in the case of a group which only meets monthly, an unproductive meeting could easily drive people away who need the group. In addition, we frequently have people who drive from over 200 miles away to attend a meeting and they certainly want it to have some substance. I decided that we could not afford to have a social club under these circumstances.

What do most people want in a myeloma support group? I believe that they want a chance to share their experiences, their fears, frustrations, anger, and their victories. They also want to learn from others who have ?been there and done that.? They want to ask questions which they've been afraid to ask their doctor, either through conditioning or fear of sounding silly. They want hope - hope which comes from seeing with their own eyes that multiple myeloma is not a death sentence. And they (in the case of the caregivers) want to be understood and feel ?a part of? as well as the person with myeloma in his/her body. More about the caregivers later.

So, what does this mean? It meant, to me, that I had to carefully control the meeting in order to ensure that those goals were met. I cannot stress how quickly two hours flies by and how difficult it can be to try to ensure that everyone gets a chance to share. Perhaps I understated the talent required to do that earlier - it is a somewhat stressful role. If Joe drove all the way from Cowparts, Texas to attend the meeting, he sure would like to get something out of it. On the other hand, old Joe can't be encouraged to take over the meeting with anecdotes about downtown Cowparts, either. And when Mildred tells us that she's just had myeloma for six months and that there's really nothing to tell ... well, my job is to artfully draw Mildred into sharing as much as she's comfortable with - that can be quite a delicate job. The good news is that after awhile the group gets the hang of it and doesn't need all that much coaching.

  • Including the Caregivers

One of my earliest concerns was that the loved ones, especially the caregivers, feel equal ownership of the group as the people with the myeloma. I'd learned that from my earlier experience with the Cancer Dialogue group. Every family with myeloma is different. In some cases it's the person with myeloma who is the ?seeker.? In other cases it's the caregiver. In two cases in our group it's one of the grown children. In a few cases it's more than one family member. Rarely is it the case where there are no seekers; they don't generally come to support group meetings! It was obvious to me that it would be a great mistake to focus solely -or even mostly- on the people with the myeloma.

I tell people that Lucy and I have myeloma - in my body. That's absolutely true. Which of us has the greater burden? Most of the time I'm sure it's Lucy, but there have been a few times when I feel that it's me. It doesn't matter - we both live with myeloma. After a few meetings, it's obvious to me which family member(s) of a family unit will be the ones to share. Once they've made that choice clear, I honor it.

One of our caregivers has thought of dividing our group into subgroups for part of the meeting: myeloma people in one room and caregivers in another. We haven't yet done that, but will probably try it at some point. Caregivers have much to say that they would hesitate to say with their loved one present. The converse may very well be true, also.

I think the main point is that we cannot know, ahead of time, who has the need (and desire) to share about what has been happening.

  • The Established Group

The North Texas Myeloma Support Group is now nine months old and firmly established. Our membership list now has 31 families. We also honor three people who have died since our group was established. We invite the families of those who have died to attend our meetings, but find that they rarely choose to do so. Our membership includes a diverse group of people from all walks of life. We have male, female, black, white, straight, gay, and varying styles of dealing with our disease and its effects. Our strength is our common focus and our desire to share and learn.

We are still growing; we get new people every month. Some stay and some decide it's not for them. Some who have been with us a while decide that they have better things to do on Saturday mornings. We are now well enough established that we don't have to worry about the group dying for lack of members. We just need to be here for those who have a need, if only for the moment.

  • Additional Materials

There are some additional materials available for people who wish to start a myeloma support group in their area. These include:

Click here to review our Support Group Listing, which is periodically published in our quarterly newsletter, Myeloma Today.

Click here to learn about the IMF's Patient To Patient Network.

Click here to learn about our online discussion group (list server)

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