GBM Reality

I have never heard anyone with this diagnosis ever say “It gets easier.”  Yet, when Mike was first diagnosed, we just kept thinking “If we can just get through this storm…”  We have been on this GBM journey for two years.  I am thankful that God put someone in my life that walked this journey out already and that could open my eyes to the reality of this diagnosis. It has allowed me to plan for the unpleasant details.  I’ve tried to remained hopeful and positive, but this journey never got any easier.  People often say “I don’t know how you do it.” “I can’t imagine.”  Honestly, it is an impossible situation and I don’t know how we do it and I still can’t imagine even how we will get through each tomorrow. I definitely don’t take any credit for being strong or for getting through it.  Because it feels impossible to face some of the things we face.  But we do somehow get through the days. 

I can’t remember the last time that Mike had an actual visitor….someone who came just to sit and talk with him.  In the beginning we were in absolute awe of all of the support we had.  Thinking back on it, I am still so very thankful that we didn’t have to walk that season out alone.  I don’t know how I could have faced such a big new scary journey without all that support at that time.  Many people made a difference.  I’m thankful for the dinners, the prayers, the financial donations, the visitors, the care packages.  It was awesome.  I don’t let this lonely season steal the joy that I still feel about all the people who did so much during that season.  I focus on the bright sides, and I focus on the happy. It has been over two years now and peoples lives have gone on, that’s just the way it goes.  I guess it only makes sense that people make their own families and their own lives their priority.  I guess I just assumed that we would be a priority in there somewhere as well sometimes.  I’ve realized that I have who I need.  Maybe not who I expected or who I wanted to stick around, but I have a handful of people who go above and beyond.  For that I am thankful.

There is so much pain on so many levels with this journey.  In the online support groups, I see that loneliness with this is very common.  People are very hurt that the friends and family who they were so sure would be there, just aren’t there. So if you have come across this blog feeling lonely, I hope you find some comfort.

We serve a God who is always there, always loving, always ready to comfort.  That’s what I know.  I don’t feel it all of the time, and I don’t know why I don’t feel it all the time.  I’m not claiming that with God its all rainbows and butterflies, because I have too many very painful and very lonely moments with this beast of a cancer that has slowly stolen so much from my family.  I’m struggling right now, but that doesn’t change the truth of who God is, even if I’m not feeling it.  

Yes, we still have memories we are making.  But so much is already gone.  I have grieved deeply over many milestones of what brain cancer has stolen….milestones in the wrong direction.  When I feel like I can’t face another day of this, I just remember that many people don’t have that one more day.  Each day of hardship is worth another day with him.

I’ve always been big on sharing our journey, but I’m not seeing any reason to share details at this point.   So this post isn’t really an update at all.  I never in my life could have imagined how hard this would be. 

This blog post feels like a whole lot of nothing, but so many random people come across this blog via google, so my hope is that it does something for someone.  Sometimes I feel like I’m talking to a wall with this blog, but then I look at the stats and see that it has had over 25K visitors, so it must be doing something.

 


5 responses to “GBM Reality

  • Dianna Hamilton

    Your post is far from a whole lot of nothing. It is just the plain truth about how hard this journey is. I am happy and sad that you have gotten two years but know what you mean about this cancer taking so much from your lives. And, yes a lot of people disappoint us along the way and after they are gone. I only got 5 months with my husband and it was an awful 5 months -no happy memories as his was in the frontal lobe and changed him into someone I did not know. No goodbyes because he could not face death-it was so hard. Keep posting-sending prayers that you get many more days no matter what they are like💕

  • Karen

    I have echoed these very same words. It hurts my heart to know first hand what you are experiencing. I hate that for you. I wish desperately that I lived closer. At about the 2 year mark into our journey, I remember my mother always trying to comfort me and say, I know you feel so lonely. We use to talk about how even though I had a spouse that I lived with, it still felt like I was living alone sometimes. He slept so much, was hard to communicate with because of the memory/speech issues in his brain, etc. It just gets lonely. I don’t want you to be lonely. Please reach out to me to talk or call the Cullather Brain Tumor Quality of Life Center in Richmond. They have caregiver support and it is wonderful!!! They understand exactly what you are going through. God does too, even though I know sometimes it feels like He isn’t listening! Cry out to Him! Just scream and yell if you have to! That always made me feel better!!! And usually I would feel His response as soon as I went to Him in my vulnerable, broken down state.

    So much love and prayers to you!!!

  • Ce Canada

    I had been searching for someone that understands what I was going through. Though we don’t have children at home now, I feel the stress of being only financial provider and trying to take care of him.
    I now feel I’ve found someone that understands. Even though I can’t speak to you personally. Thank you so much for sharing your journey.
    I would like to ask about the online support group you have mentioned. How do I access?
    Thank you

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