When my dad was first diagnosed with GBM I spent hours scouring the internet for anything I could read to learn more about the disease and what to expect. The first few weeks were shocking and made me feel really helpless and angry. I tried to find as many blogs as I could to see what other people were going through and how my experience might be.
At first I would just skip over blogs of people that were a year or so out from the death of their loved one thinking they were in a totally different place than I was. Or I would go back and read their blogs from the beginning and think things must have changed since they went through all of it. Medicine changes so much over time. My situation will be different.
Well it wasn’t. Modern medicine hasn’t changed that much over the past 5 years for GBM. Yes, there are new clinical trials all over the place. But the standard treatment is still the same. The general life expectancy hasn’t changed. The end of the disease (from what I have read and what I went through) is generally the same for everyone. Which is a horrible train wreck of emotions and anguish that is hard to explain unless you have gone through it and watched it yourself. The symptoms and decline are very similar in every person. So when I read a blog or get an email from someone saying their loved one has certain symptoms my heart aches for them because I know what is going to happen next.
Which gets me to the point of this post. When I was searching for answers and support I disregarded probably a lot of good information and resources. I didn’t think that anyone that had already gone through it a year or more ago would really remember the feelings they had, or have anything to say that was important to me at the time. They had gone through it, it was over, they had probably moved on and were fine now and wouldn’t remember how I was feeling.
Was I ever so wrong. I probably missed out on some really good advice that would have helped me. I was naïve and didn’t have a clue on how this experience changes a person, and how you won’t ever forget it.
I still remember how I felt the night before he was diagnosed. I knew something was wrong. I knew we needed to get him CT scan. The urgency I felt scared me. I remember how I felt standing in the ER looking at the MRI image on the computer screen and the ER doctor warning me it was probably Glioblastoma Multiforme and that there wasn’t anything I was going to read on the Internet that was going to be positive. I remember thinking that he was wrong, it couldn’t be that bad. Then I remember how I felt when I finally did Google it that night and how horrified I was. I remember waiting for hours while he was in surgery. I remember how happy I was when he finally started being himself again a few weeks after surgery. I remember forgetting he was sick once in a while for a few short months when he was doing so well. I remember when he started forgetting again and sleeping all the time. I remember when the new tumor was diagnosed. I remember waiting again in the waiting room for his surgery to be over and actually praying “please take him now during surgery” because I knew by then how it all would end. I remember how I felt when we found out that 3 new tumors had appeared just 19 days after surgery. I remember how I felt when my mom decided to stop treatment a few weeks later. I remember how I felt sobbing on my knees praying the night she told me her decision to let it go fast, to not let him be in pain, and to help him not be afraid. I remember those last 9 days wondering how long we could really do it, sit by and watch him die. I remember the relief I felt when it was over. I remember the dark hole I lived in for months after that. I remember crying everyday in private trying to stay strong in front of my co-workers and family. I remember all of it. Every tiny feeling I still remember.
Even though it has been 1 year, 11 months, 3 weeks and 2 days since he was diagnosed with GBM, and 1 year, 1 month, 2 weeks and 3 days since he died, I remember it all. It seems like a long time, it’s not, and it is all still very real and painful.
There are so many good blogs and websites out there that helped me. Some of my favorite blogs are:
These are written by loved ones of people that are going through or have gone through GBM, and some by people that have GBM.
There are also some good groups like American brain tumor association https://www.inspire.com/groups/american-brain-tumor-association which has a wonderful message board that helped me a lot. Facebook actually has 2 groups I have been a part of. Glioblastoma Support Group and The Next Step (Coping after a GBM Loss). Also www.brainhospice.com is an amazing website with an abundance of information that helped me the last few months of dad’s life. I know I have posted it on here before, but I can’t begin to tell you how helpful that site was.
So some advice. If you are going through this right now, whether it be the beginning, middle or end (well it never ends), read, research, ask questions and don’t be afraid to ask for help. You don’t have to go through this alone.