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Facilitator has first-hand
experience
Maryann Chandler was diagnosed with acute myelogenous leukemia on
April 1, 1987. On June 12, she had a bone marrow transplant.
"I had no support during transplant. I never had an opportunity to
talk to someone who had a transplant prior to my own. During the two years it
took me to recover, I still never talked to anyone. There were support groups
for everything other than BMTs. General cancer support groups did not meet my
needs," Chandler recalls.
After Chandler recovered, she organized a group for people living
in the Chicago area who were diagnosed with leukemia or who had undergone a
BMT. She serves as facilitator of the group, which started in March 1990.
Topics at group meetings depend on who is there. "If we have only
long-term survivors, we talk about the transition back to work, the impact on
our children, insurance issues. Or, we can spend the whole meeting talking to
someone who has just been diagnosed. If someone has a particular concern, we
will deal with that issue." Not allowed at group meetings are comparisons of
physicians, transplant centers or treatment approaches.
Chandler has found that people in the early phases after
transplant are very motivated to seek support. "I had a woman who drove from
Hammond, Ind., more than 1-1/2 hours away, for the first six months," she
says.
"Phone networking is a major component of our support
system. Members maintain contact with each other during the month. This enables
us to provide ongoing support between meetings, and keep in touch with those
who live too far away to attend meetings."
The group also keeps in contact with members who are in the
hospital or recovering from BMTs. "We call them from the meeting, send them
cards and keep in touch with their families."
When she began organizing the group, Chandler went to all the
transplant centers in the Chicago area and talked to doctors and nurses. She
also mailed brochures to oncologists. Chandler enlisted doctors to serve as
consultants, to give the group credibility and to ensure that she provides
accurate information.
"When I made the decision to start the group I had the names of
three people," Chandler says. Her mailing list increased to 58 people in the
first year. Chandler holds the meetings in her home, and six to eight people
attend each month. People can join the group any time and can attend as long as
they want. Spouses and family members are always invited. Twice a year she
organizes a party attended by 20 to 30 people.
According to Chandler, the group reflects the reality of the
illness. "Some people are going to survive and do well. A few are going to live
with graft-versus-host disease. Some are not going to survive. When a group
member dies, we discuss survivor guilt and our fears of relapse. We address the
issues. We also try to support the surviving family."
The group includes people seven to nine years post transplant.
"They have dealt with all their issues. Now they are giving a lot more than
they are receiving," Chandler says. "You get a warm feeling when you have
helped someone else. It's your way of giving back."
But for a few small donations, Chandler receives no funding
support for the group, and pays all expenses, which totals about $1,000 per
year, out of her own pocket. For those who are thinking of starting a group in
a city smaller than Chicago, says Chandler, expenses are likely to be less.
In March, Chandler split the group in two. One group, LIFE
(Leukemia/Lymphoma Information & Feelings Exchange), is for chronic
leukemia or lymphoma patients who have not been transplanted. The other group,
BMT Support Group, will be open to all types of BMT candidates and survivors.
Chandler says patients who are awaiting a donor or are ineligible
for transplant may find it difficult to meet together with transplant
survivors. "If you are going to have a transplant you have a great deal of
hope. If you don't have a donor, that can be a very upsetting situation. Those
who are not candidates for transplant find it hard to listen to the
others."
Two of her long-term goals are to have periodic meetings for
caregivers, and to have meetings for children of transplant survivors. She is
also planning an annual meeting just for women.
BMT survivors tend either to become involved helping others or try
to put the experience behind them, Chandler observes. Either is fine, she
says--but her own direction is clear.
In September, Chandler will begin graduate study in social work at
Loyola University. "My focus of life has changed since my BMT. When I get my
M.S.W. I hope to counsel transplant patients and their families. There is a
real need."
If you are interested in joining LIFE or the BMT Support Group,
contact BMT Newsletter at 847-433-3313 or toll-free 888-597-7674 for Maryann
Chandler’s phone number. |
