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DIEP Flap Support Group
The DIEP flap support group was formed in my office over 13 years ago because many patients who had this particular surgery had a difficult time finding other patients who had had the same surgery to talk to. Meetings were held once a month, in a very positive mood and setting.
The group has exchanged phone numbers and many have become close friends with others in the group. Almost all are willing to speak to patients considering the DIEP flap for breast reconstruction.
The group is loosely structured and the discussions can vary from questions like "when will my jeans fit right" to genetic testing and fears about the next mammogram.
Recently the group has committed to visiting new postoperative DIEP patients in the hospital.
Below are the minutes from two of the past meetings:
C. A. opened the group meeting by asking everyone to introduce herself. Everyone seemed to want to talk about anniversaries - how long ago their surgery was. One husband spoke about how he had feared his wife dying but she had done so well during and after the procedure that his fears were laid to rest. A group member spoke of feeling overwhelmed whenever she has to go for routine check-ups to her doctor. Another member added that she needed (professional) assistance to help her cope with her anxieties over the disease.
A member who is one year post-op stated that initially after her surgery she was very strong but now she feels anxious whenever she hears the word "cancer." The next member was six weeks post-op and she feels she is handling it well. She has a young child and her extended family has not been supportive. Her husband and her parents have been wonderful to her and she has had the strength and support of T.D., another member, who has been inspirational to her with her counseling and step-by-step explanations of what to expect. At this point it was suggested by several members that a phone list be compiled to allow other patients who might undergo the DIEP procedure to have a support backup. Other members seconded this and a list will be drawn up for distribution at the next meeting.
Other members spoke about loss of optimism after having done well initially after surgery. C.A. reminded everyone that in every life horrible things happen and yet we feel our situation unique to ourselves. She encouraged everyone to exercise and offered a referral to her personal trainer. The next member brought the discussion back to the fear of reading about things related to cancer. She said she felt her limitations now but was reassessing her life and learning to prioritize. Another in the group spoke of sleeping problems since the surgery and said she would like to speak to the anesthesiologist who had "held my hand for so many hours."
Present at this group meeting was a new DIEP member who was only one week post-op and still had drains. The group was very protective and supportive of her and there was some joking about the next meeting having someone come straight from the hospital three days post-op.
The members were reminded of the "Making Strides Against Breast Cancer" walk that will be on a Sunday in October.
If you would like to add something new to the minutes, just let us know.
The support group meeting met on Wednesday, 9/10/08. There were eight people present. The meeting opened with introductions of the group members. Discussion began with one member who had had a biopsy for possible recurrence on her other breast. This member was clearly upset and angry at her body for betraying her because she has been religious about following a healthy lifestyle. She incorporates good diet and regular exercise in her routine. She feels she has done everything right and still had this happen to her. The group was very supportive of her and sympathetic to her situation. Everyone realized that it sets you back to when you were initially diagnosed and it is against that flood of bad feelings that we fight. Another member told her that she had been through the same situation and it had turned out to be a totally benign lump and a "false alarm." The member made us all laugh when she said that right after the biopsy when the nurse asked if she would like some cookies she replied, "No way, I want a Whopper." We hope to celebrate good news for her next month with Whoppers.
I.E., another group member who could not be present because she was having the second stage (nipple reconstruction) surgery, had sent a bottle of champagne and list of toasts she wanted us to make in honor of her surgery. This was a good thing we felt, to do, and so we toasted to continued good health, optimism and a feeling of sisterhood in this group. T.D. reminded everyone in the group that we all are here for each other and that we have all had the benefit of Dr. Keller's expertise and that they all have had a state-of-the art reconstructive procedure. Talk then turned to legislative efforts. Some of the members were very well informed on this and they were kind enough to share their knowledge with the group. [Coverage for many women has now been improved with amendments to the NYS law.]
T.D. had a question about how faith was affected by diagnosis and surgery. Everyone spoke about their differing feelings of spirituality and religion. Even the members who do not believe in God agreed that everyone gains when they set aside past grievances and forgive for the benefit of not dwelling on anger. Everyone agreed that forgiveness has a dual fold benefit in healing; not only do the forgiven feel better, but also the person who forgives can let the burden go and concentrate on their own issues.
We had one member who had her procedure not too long ago and everyone assured her that the sensations and little aches and pains that she was feeling were "normal" and similar to what they themselves had felt at the stage at which she is now. This was reassuring to her; everyone was very supportive. We ended the meeting on the note that this group is to make everyone feel that they have someone to talk to about their surgery and the issues that come up related to it. A date was picked for the next meeting.