[Beacon Staff]

Weekly Poll - Do You Attend Myeloma Support Group Meetings?

by Beacon Staff on Wed Feb 05, 2014 11:46 am

This week's Myeloma Beacon “Weekly Poll” is about myeloma support group attendance.

As usual, there are a few clarifications.

First, this question is for readers who have any kind of myeloma (e.g., smoldering or symptomatic) or MGUS.

Second, we want to focus in this question on attendance by *patients* at support group meetings. Thus, if you are a family member or caregiver of a myeloma patient, please answer on behalf of the myeloma patient in your family or for whom you are the caregiver.

We will do a separate poll at a later date asking about the attendance of caregivers and family members at support group meetings.

Third, when answering the poll, please try to reflect not just how often you have gone to support group meetings in the past, but also how often you expect to go to meetings in the future.

Fourth, if you don't go to support group meetings, don't be afraid to say so. It's just as useful to have answers from people who don't go to meetings as it is to have responses from people who do.

Finally, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.

For those who are interested, here is a link to the 2012 version of this same poll:
https://myelomabeacon.org/forum/weekly-poll-do-you-attend-myeloma-support-group-meetings-t670.html

[Nancy Shamanna]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Nancy Shamanna on Wed Feb 05, 2014 12:18 pm

I try to go to our monthly support group meetings, and am also on the 'steering committee' of the support group, which is a very interesting volunteer commitment. Our meetings range from having a discussion evening, to having speakers, having a spring and winter party and also putting on a walk/run every July and a patient education seminar in conjunction with our cancer centre every two years.

Thus it is quite an interesting volunteer job, and I have met lots of other patients and their caregivers because of the support group. When I was quite sick and undergoing intense treatments I did not attend, but I did meet the then leader of the group at the cancer centre. She persuaded me and my husband to come out for meetings and to get involved. Carol was a wonderful person and I hold her dear in my memory now.

I would not have such a wide grasp of myeloma now had I not joined the support group. In many ways it has been reassuring to me to meet others on this same 'journey'. Attending patient education conferences has been a very interesting experience also, and I also learned a lot that way.

[Gilbert]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Gilbert on Wed Feb 05, 2014 2:42 pm

Would love 2 attend support groups I live in Morris County NJ. Any near me coming up?

[Beacon Staff]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Beacon Staff on Wed Feb 05, 2014 2:56 pm

Gil, there's a myeloma support group that meets twice a month in Morristown, NJ:
http://www.morristown-nj.org/todo2.html?id=994953738

[Guitarnut]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Guitarnut on Wed Feb 05, 2014 10:47 pm

I would love to be involved in a support group but there are none in my area. Not realistic for me to drive miles and miles to get to one.

[dianaiad]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by dianaiad on Thu Feb 06, 2014 5:28 pm

Same here (about the lack of support groups). The nearest one I know about is in Duarte, with the City of Hope, something like 80 miles from where I live, through heavy commuter and freeway traffic.

I'd rather drive the 800 odd miles to Utah than tackle that mess.

I think I would like to attend meetings, if I didn't have to go that far, through that sort of traffic, to get to one.

[maryk]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by maryk on Fri Feb 07, 2014 1:35 am

My husband and I were quite leery at first to join a group fearing it would be a "pity party" with everyone feeling badly. Were we ever wrong! This group has taught us so much and supported us so thoroughly that we look forward to each and every meeting. The atmosphere is very positive and it is so encouraging to see so many people doing so well years after their diagnosis. It gave us new hope that life would return to "normal" at some point and it has as my husband is now in remission with no paraproteins in his blood for over 9 months. Yay!!

[Tom184]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Tom184 on Sat Feb 08, 2014 2:00 pm

I attend the monthly support group that is held in Virginia Beach Virginia. It has been both very informative and supportive. This is in part due to the overall involvement of the group members. However, "a big tip of the hat"has to go to our support group leader Jerry Walton. (KnowingJerry, he will probably be annoyed at me for singling him out for credit:) Jerry arranges for top-notch speakers and sets a tone that encourages sharing but not a sense of "we are victims."

I wish everyone good health, no relapses, and a group to support you during this difficult journey.

[gardengirl]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by gardengirl on Sat Feb 08, 2014 7:13 pm

I would love to find a support group nearby. I live north of Baltimore if anyone knows of any! There are a couple in Delaware but they are 1.5 to 2 hours away. Thank you!

[Chris m]

Re: Weekly Poll - Do You Attend Myeloma Support Group Meetin

by Chris m on Sun Feb 09, 2014 4:13 pm

We live in northern Michigan and there are no multiple myeloma support groups here in our area. If there was, we would attend. I especially would like to have interaction with other caregivers, because I think caregivers have separate issues, in addition to our loved ones.