Community Members' Gratitude
Some of our community members share their thoughts about The Healing Exchange BRAIN TRUST, and our
online support groups.
"This list is the best thing that happened to me since I was diagnosed with my meningioma. This [Meningioma] list put the world at my finger tips it has
given me so much more than I could ever repay. It has given me hope support but most of all it has given me friends I hold very near and dear
to my heart. I have met People from all over the world. It has taught me that even though some of us on this list have very different opinions on
life that our common thread (meningioma) is strong and helps us work things out. Like the credit card ad says this list is priceless."
--Robin Burkhardt, survivor (Albany, NY)
"I don't know what we would've done without the [BRAINTMR] list. It is clarity, hope, love, and friendship
during the most difficult of times."
--Blanca Baldoceda, caregiver (Arcadia, California)
"If I hadn't found this [BRAINTMR] list when I did last January...My brother Paul would have died within
two weeks. Because of the People on [BRAINTMR] I have had a wonderful 6 months with my brother. I can't
imagine my life without all of you."
--Kristen Cuddy, caregiver (Norwalk, CT )
“Whether it was advice, support, encouragement or just the answer to a question, it came, and came
quickly from the remarkable group of caring individuals that have become our brain tumor
family. Having this resource at our disposal was intensely comforting especially during those dark
uncertain times. BRAINTMR is a wonderful worldwide support group.”
--Jeanne Jain, caregiver (Dadra & Nagar Haveli, India)
“I felt extremely alone. I didn't WANT to be
put in touch with parents of children who had leukemia - that simply isn't the same thing at all...I joined
BRAINTMR, and instantly my Inbox went into overload...All of a sudden, I had friends who understood. Distance
isn't an object under these circumstances.
The importance of BRAINTMR for information and help cannot possibly be overestimated.
I was buoyed up by love and support. That kind of help is not available from any hospital or doctor
in the land.”
--Ms. Berendina Norton, caregiver (Surry, England)
"I only found you about 2-3 years ago. What a help you all have been. A year after my surgery, I was feeling as though I was not
keeping up at home and at work, that there was something wrong with me. After finding the [Meningioma] group and reading about others' experiences, I
came to realize that I was not alone - this was common with BT survivors. My losses are small compared to some of you, but I noticed & so
did my family. It was good to learn that this is a common experience with those who have brain tumors, surgeries or other procedures that disturb
the brain. It is a pleasure to be part of this extended BT family - thanks for being there."
--Merey Vaeth Barden, survivor (Catonsville, MD)
"Again, thanks so much for your input and I can't tell you how much I love you guys and appreciate your support! I do not believe I
would still be functioning without this [Meningioma] list."
--Melissa, survivor (Dallas/Fort Worth Metroplex, TX)
"I am appreciative of this [Meningioma] list – a place where we share “our moments” and they will be received with kindness and compassion.
We can’t hope for a life without suffering, but we can use our inner resilience to spend each day with dignity and grace. I have become so
much more aware of my authentic self through this experience; and I continue to work on accepting myself unconditionally."
--Gabriela Ostendorfer, survivor (Calgary, Alberta, Canada)
"You have touched on the sheer terror of having your brain, mind, and 'essence of self' messed with either through surgery, radiation, or leaving things as they are because of the danger. Some days the terror is non-existent for me, and some days the terror is kept just below the surface. A sudden rush of pain, a spasm, a tingling, or a weakness can cause the terror to rise up in an instant.
Your ability to provide us with accurate and timely information in a reassuring manner when needed, is immeasurable. Sort of like a 'Come one, come all...this is your friendly Brain Tumor Help Line. On-Line Nancy, right here!'
Your expertise and confidence has quieted many a fear for all of us throughout these past years. For that, you have my profound gratitude."
--Debra T. Hennessy, survivor (Duluth, MN)
"I appreciate you answering me so quickly. All day today I was thinking about checking my e-mail tonight for your reply. You have been
very helpful and have helped me do a reality check and settle down. Thank you for the detailed info, your compassion and outreach.
We are a mess right now but hanging in there one day at a time. God bless you and your efforts."
--Sue, caretaker (Tennessee)
