I’ve thought about this so many times. There’s an incredible lack of support available to brain cancer patients and their caregivers as a whole, but especially for families dealing with Glioblastoma, the fastest, most aggressive cancer known.
This burden is so great in the GBM community, it has even been studied. I don’t know entirely how I can make a difference, but I aim to. And this blog is part of that beginning attempt to, while I struggle to bear everything I do.
In some ways, this experience is all too familiar.
I remember how when my husband first deployed, there was no Family Readiness Group (FRG) for support, but for his 2nd deployment there was – sort of. It was odd for us, because none of us lived in the same town and there was no full base nearby. Our soldiers were almost all Texas National Guard and had been cherry picked from all over the state. Supporting each other was not easy, and the military itself pretty much did nothing, as we were not “regular army families.” But we tried to band together. We planned gatherings, got our kids together and tried to be an ear for each other when we could. We even raised money to send our guys better gear than what they were issued.
Ideally, an FRG functions to support the family while a soldier is deployed. Minimum wage for soldiers rarely pays for everything, there’s always financial and emotional stress and the stress levels as a deployment parent are incredible. We’re left holding the whole bag, with half the power and resources. Cleaning house with each other, sharing meals, sharing frustrations and comparing parenting notes with others who know *exactly* what you’re going through. These are the magical things we did. Generally you’ll find older members who also join to support a group, even when their soldier is retired or not deployed, just to be a voice and guide of experience. Even in an imperfect situation, a support group like this is valuable, and at the very least – better than no help at all. And better than no emotional support for your children at all. Those gatherings, even as few as they were, were priceless in helping my children deal with the temporary loss of their father. And getting to meet other kids who knew exactly how they felt, without a lot of preconceived ideas that outsiders and the disconnected always have.
And the way I see it, we’re all in a battle of our own in the GBM community.
And we need something like an FRG. Made up of those of us going through it now, those of us who’ve been at it for awhile and even those of us who no longer deal with GBM directly, but have the scars to prove they lived it.
John and I have talked about it many times. We don’t know how we’ll pull it off. But we don’t want all this to be for nothing. We want to make a difference and somehow shift this reality and transmute it into something worthwhile.
The lack of support for GBM families is one area that stands out. Sometimes we have great families and friends. Sometimes those people are helpful. Sometimes they unknowingly cause more stress. But those of us living it, we get it like no one else.
And it may just be that it takes us to create the framework for a support system we so desperately need.