The glioblastoma world is tough to navigate in the beginning.
You have to get your sea legs and get them fast. And no one knows what you’re going through better than another GBM fighter or family.
One of the best things you can do for yourself is join a support group.
In my area, we don’t have any local groups I can attend live. But there are several online.
Here are a few that I know about and recommend:
There are several Facebook Groups dedicated to brain cancer in general, as well as glioblastoma specifically. I personally prefer the more active ones who are more geared to sharing information, not just focusing on venting. These are groups I recommend when you need emotional support as well as to crowd source information and compare notes fast.
1) Glioblastoma Support Group – (https://www.facebook.com/groups/gbm4cure)
This is a very supportive group of patients, caregivers, family and friends. This group shares a lot of information on different treatments we are going through, and helps answer questions about what to expect. There is also a very long list of resources files hosted by this group that you may find helpful in your GBM journey.
2) Private GBM Diagnosed Support Page – (https://www.facebook.com/groups/gbmdx)
For those who are personally diagnosed with a GBM (or any other Stage IV primary malignant brain tumor) and need a safe place free from caregiver vents, obits, etc consider joining the private support group for our members – search for the group GBM Brain Tumors and ask to join the private support group for direct contact among those diagnosed with GBM.
3) The Next Step – (https://www.facebook.com/groups/GBMNextStep)
For those that have lost loved ones to GBM and want to continue the support found in the first group above, with a focus more on bereavement topics. The Next Step (Coping after a GBM Loss)
4) Vietnam Veterans with Glioblastoma Multiforme Stage 4 Brain Cancer – (https://www.facebook.com/groups/772344182841642) GBM support group for Vietnam veterans and their families and caregivers. (A connection between Agent Orange used in Vietnam and GBM has been proven.)
5) US Military – (https://www.facebook.com/groups/160894770984399/) GBM support group for US military personnel and their families and caregivers. (Full disclosure – this is a group that I started. John and I have seen so many servicemen in the waiting rooms and some people say that the researchers at Duke have noticed brain cancer being on the rise for military personnel. But the VA does not acknowledge this. So I wanted to create a space where military families struggling with GBM could connect.)
5) GBM Grade 4 Survivors Group – (https://www.facebook.com/groups/GBMgrade4survivors) A long-term survivors group that is focused on positive stories of hope.
6) Novocure, Optune Support For GBM – (https://www.facebook.com/groups/347097922150691) A group specifically for those patients who are using Optune to fight their glioblastoma. Those interested in learning more about Optune are welcome to join as well.
7) Glioblastoma / Brain Cancer & Tumor Group – (https://www.facebook.com/groups/225309647594382) This group is for all brain cancers, including glioblastoma.
8) Grey Matters – (https://www.facebook.com/groups/148414725227406) This group is for all brain cancers, including glioblastoma.