My mom was diagnosed with glioblastoma in 2018 shortly after our son’s college graduation. We had noticed she was having memory issues and was acting a bit strange but thought maybe it was early dementia. That changed after the police called me one day and said she had been calling them over and over reporting someone was trying to break in her home, but there was no evidence of this.
In addition, she claimed to be talking to a dead neighbor and was found trying to make a phone call with her tv remote. A routine brain scan by the hospital found the brain tumor. It was grade 4 and inoperable. She only lived 3 more months after diagnosis. She passed away on 9/23/18 at the age of 68.
I went from having a Mom who was the healthiest and most strong person I have ever known, to having a mom with only months to live. She lived alone and managed to hide her symptoms for months. She was so strong, so loving and so dependable. The doctors were shocked at how well she was doing physically despite having such an involved and extensive tumor in her brain. I am still devastated by her death and do all I can to share her story and keep her memory alive.
Having a community of people to talk to about our experience was a true blessing. It helped to have others who were dealing with the same struggle that we were. The community helped me understand what was happening with her as she physically transitioned from a fully functional adult to a bed bound hospice patient who required full time care. Knowing I wasn’t alone and talking to others in the same situation helped me to cope with this new normal.
May is a very important month as it brings attention to this rare but often deadly form of cancer. It helps me to share my mom’s story and bring awareness to this horrible cancer. Brain tumors don’t, in my opinion, get the attention or research funding they deserve. Brain Tumor Awareness month gives those of us touched by this experience a chance to share our story and hopefully help others who are struggling with this awful diagnosis.
That it is different for everyone but that the end result is often the same. I wish they knew the signs so it could be caught earlier and treatment given before it progresses like my mom’s did. We didn’t know the signs and her own doctors didn’t see it either so she was not diagnosed until it was too late to do anything for her. I don’t want anyone to suffer like we did because the diagnosis was missed.
I am grateful for organizations like yours who bring attention to this horrible and rare condition. I hope sharing my mom’s story can help someone else who is dealing with a loved one with this diagnosis. We must tell our stories and spread the word so something can be done to hopefully cure this so no one else has to suffer and die from it.
