Lost my post.....darn.

Take care of yourself your caregivers.

#1 Get your depression managed. I am taking Effexor with Haldol and Ambien for sleep. These have been magic for me, because I was nearly suicidal. It was taking it's toll on my family. Now, I am rested and no longer depressed. My family thanks me and attends counseling and church with me as well as sets up my medication weekly holder. We sit to set my schedule so they can hopefully attend. I also bought and drive a car, which gives me great independence.
#2 Find friends and/or faith to provide relief of worry, guilt or emotional turmoil.
#3 Remember always: there is NO right or wrong path. each of us GBM victims is unique. At a decision point, you will bring all your special needs and experiences that will impact your choice. Use all that information and experience to your benefit.
#4 GBM is terminal, so no choice can be worse. We need time and quality of life.
#5 Consider alternative medical interventions. I have found aromatherapy very comforting. My daughters choose the essential oils and we combine recipes. spa-like seems best so far. The crazy diets out the have no real proof of benefit. The paleo diet made me depressed and lose too much weight. Now I eat what makes me happy.
#6 Settle your final plans with you ur family. This means funeral and estate planning. Your family has this huge burden on their minds daily. Get is done for them.
#7 Smile 24/7. Try it for a days. It is contagious....look in the mirror and smile at yourself first.

We are all related in a very intimate way with the GBM. If anyone has advice or special needs, let us help each other help ourselves and our caregivers.

Love ya all.

Belinda, smiling and hopeful for grandchildren someday.

Belinda, thank you for all that you have shared!!!! One of my best friends is living with GBM (three year survivor) and is a patient at Duke, though she has not yet needed to enroll in a clinical study. She followed a strict anti-cancer diet for the first year post surgery (glial wafer added) and chemo. She now follows a strict organic diet, mostly vegetarian; she exercises daily, meditates, and has massage therapy once per week. She also drinks at minimum 8 glasses of water daily, which she feels reduces the side effects of her chemo.

I wondered if you have been in touch with Cheryl Broyles, a 16 year survivor of GBM!!! She has undergone and recovered from many surgeries, and shares her story on her website and on Facebook. She wrote to me personally when my friend was first diagnosed--which gave me so much hope! She is amazing, and such an inspiration, as are you! My friend also goes to a therapilates counselor who also taught her about "smile" therapy. "Don't until you are happy to smile; SMILE FIRST, and it WILL make you happier." She was also taught about stacking her joints/body when walking that would make her feel better, and help to recover her poster. Head directly over shoulders, directly over hips, directly over knees (straight,directly over feet). Also, Cheryl Broyles shares MANY tips on her website. All sources and advocates have encouraged my friend to practice the power of positive thinking (easier said than done).

Wishing you the best. I pray for a cure, and for improved treatments and life style measures!