My father was diagnosed with Glioblastoma Multiforme on March 26th, 2012 and died February 4th, 2013. He lived 302 days from diagnosis. I started this blog with hope that it would give me an outlet to vent all my emotions. Over the past year it has given me peace, “introduced” me to many new people FRIENDS that have gone or are going through the same experience, and has helped me through the hard journey this cancer presents. You can read how this all began in the post The Beginning. The timeline of my dad’s fight is found here. Frequently asked questions about his death and the days after are here.
You can email me at heather.swenson@usu.edu. I will answer all email. If you have found my blog because you or you have a loved one that is going through this my prayers are with you. May you find peace and comfort. It is a hard road to travel, but you don’t have to do it alone.
Trying To Survive One Moment At A Time 
I read your remarkable story with tears rolling down my eyes because it felt like it was mine. I’m going through the same thing you are with my dad and he is my life!!! Please feel free to contact me anytime I would greatly appreciate it. My name is Janis and we have been going through this since March 2012. My email is .. Tangal1234@aol.com..I feel your pain everyday!!!
What is it about March 2012? On March 4 we found out that my husband 62 also had glioblastoma. Ironic the 2 of you had similar experience about the same time with this terrible condition. We have twins age 18 who are leaving for college this month and my heart is breaking. My husband is scheduled for an MRI on Wednesday Aug 8. The last one done a few months ago showed some viable cells around the necrotic tumor. I like the idea of supporting each other online. The cry scale is quite unique. I have a “hold my breath” scale before big appointments or when I see a change in his cognition, behavior or balance. We are not alone are we? My email is lucydarraharchibald@gmail.com. I will follow the blogs but don’t have the energy to start my own. I appreciate all you are saying -it is also what is in my heart.
Heather~
Just came upon your blog. You’re blogging everything I wish I could put in writing! My husband, 54, was diagnosed with GBM in Aug 2011. We have three beautiful children, 14, 17 and 20. Should I be joyful for this time we have together? or are the horrible treatments just delaying the inevitable?
Recently I’ve wondered ‘how does it feel to have a doctor tell you that you have 3-6 months to live?’ What is my husband feeling, thinking? No wonder he sleeps all day. Sitting around and thinking of the reality must really stink. His tumor is in the left temporal lobe, and like your dad, effects his personality and emotion. He has lost his sense of humor and finds it very difficult to have a conversation. “Word Salad” was something I never heard of before….mixing up all his words. Now it’s my life, trying to decipher that “where’s the flim?” means “where’s the clicker?” My kids and I search for the brightness in every day with him. We now refer to Whipped Cream and “Youpa Common” – a word he came up with when we were serving Strawberry Shortcake and he wanted more “youpa common” on his portion. Most of our teasing goes over his head, and it’s not kind to make fun of his problems, but it’s these small quips that help us understand that we’re in this together, and that’s all that’s left of the father they knew. He’s also into the knuckle bump as congratulations for an achievement. When the kids come home from school with a good grade or sports acheivement, expressionless he’ll raise his fist to give the congratulatory knuckle bump. That brings smiles from all of us!!
Thanks Heather, for putting all these thoughts into words.
Just wanted to write and tell you that you and your family are in my prayers. My husband has GBM as well and had his surgery March of 2012 too. We both are 36 and have a one year old. It truly is the hardest thing to go thru…ever! Thank you for sharing your story. My husband has a blog as well, feel free to check out our story at aheadofcancer.com. We also follow another blog glioblasted.com, he tried Avastin and had some problems and ultimately had to come off of it. It might help you and your mother with your unbelievably hard decision. I wish you and your family all the best.
Hello,
I just found your blog today and I’m crying as I read The Beginning. We lost my mom to GBM just 13 days ago. She had only 108 days with us after her diagnosis.
The process of losing my mom has been the most painful yet most beautiful experience of my life. I realize how morbid that sounds, but I think some of life’s biggest, most precious treasures are found in the deepest valleys.
My heart is with you and you’ll be heavily in my prayers as you continue this part of the journey.
If you have any questions or just want to connect with someone who might be feeling what you’re feeling, please feel free to email me. My name is Lori. lori@lorilaraphotography.com.
I just found your blog today. I lost my dad to GBM two weeks ago on Father’s Day (also his birthday). My dad was my world, too. Reading your blog felt like you were talking to me. Like you had mentioned, right now there is this huge, gaping hole in my heart that no one but my dad could ever fill. I feel this crazy mixed up bundle of emotions where I want to scream one minute and cry the next. I am a woman of faith and I try to rely on that to help me through, but the absence of my father’s presence is so overwhelming at times, it feels like I can’t function. It hurts so bad. The “time will heal your wounds” cliché gets to me, because I don’t ever see me getting over my dad. Trying to get on with life and getting back into work like I had been on vacation is hard. I try not to let my husband and kids see me cry too much and I try not to talk about my hurt too much as I don’t want others to see me as a psych case. My dad was diagnosed with a brain tumor on Jan 18, 2013 and had a resection of a 7cm right parietal tumor on Jan 21, 2013. We got the diagnosis of GBM- stage IV two days later when his final pathology reports came in. He made it through 2 rounds of chemo and a course of radiation. He had been in and out of the hospital numerous times with pneumonia (one time requiring him to be on a vent for 5 days). Each time he fought back and told the doctors to “bring on” whatever treatment was next. Finally, during the last week in May, his strength was declining. He went from walking with standby assist with a walker to a 2 person assist. By June 4th he had lost his ability to walk at all. We admitted him to the hospital and a MRI showed his tumor had affected almost his entire right half of his brain. His doctors gave him 2 weeks to live and Dad was admitted to hospital inpatient hospice on June 5, 2013. He died 11 days later on his birthday. He turned 67 years old that day. Those last almost two weeks in the hospital were hell. I practically lived in that hospital room with him the entire time as I wanted to be with my dad when his time came. To watch my father decline was horrible and I never felt so helpless. I can relate to your experience and thank you for sharing your story.
Thank you Christine for taking the time to share your experience with me. It makes my heart ache for you, because I do know exactly how you are feeling. I can promise you that it does get easier. I know it sounds like a stupid thing to say. Maybe I should add it to my last post of things NOT to say, but truthfully it does. I still break down, but not as often. I am still sad, everyday, but it is bearable now. I can actually breathe through it all now. The huge gaping hole is still there, and I imagine it will always be there.
Don’t let anyone tell you it is time to be done being sad. There is no right time frame for grief. Take your time. Mourn, be angry, cry. I try not to cry in front of my kids and husband either. I cry a lot in the car. You’re not a psych case. I do know what you mean though about how you feel others may perceive you. But they aren’t going through it, so they have no place to judge you. The best thing I did was get a therapist. My mom doesn’t really want to talk about it much and I had to talk to someone about those last 9 days watching him die. It still bothers me. It still is raw and fresh in my mind. My therapist listens and I know she isn’t thinking “Oh my gosh, stop it already. You have talked about this a bazillion times. Get over it.” My husband would never say that to me, but I think he might think it now and then.
It is amazing how fast GBM gets in the end. Reading your experience reminds me so much of mine. It doesn’t seem fast in those 2 weeks. I didn’t think I could make it one more day it was so hard. But like you I wanted to be with him. I do have to say that there were some amazing things that happened during that time though. Things I don’t share on the blog because I know everyone’s experiences are different. But it was very spiritual at the end. Very peaceful.
Please email me if you want to “talk”. It means a lot to me that you shared your experience with me. I hope you find peace and comfort. Thank you. ~Heather
Hi, dear
My name is Marcelo. I’m 45 years old. I live in Brasil, South America, I’m a Doctor, Radiologyst.
My Father dead like yours. He had GBM 4, a terrible sick and he servive only 6 months. He died en December 15, 2014, near Christimas day.
It was so sad day and until today I’m unhappy and depression. Me, my mother and my sister.
Sister cry every day and mother too. I’m very sad and my lif has been dark…very dark.
I holp you fell good one day !!!
This is the life
Best reguards
Marcelo Gentil MD
Found your blog one week to the day of my husband’s passing from a GBM. His oncologist called me today to express his condolences. I reminded him that my husband probably had the GBM a year prior to diagnosis. At that time, in March 2013 he was smelling things that were not there. A sign that my son told him could be the first indication of a brain tumor. We all laughed and went on with our dinner. The oncologist, who is very astute said to me if the diagnosis had been made a year earlier the outcome would not have been any different and we would have suffered with the knowledge of the GBM for a year longer than we did. He is so right. The 8 months that we went through were more than enough heartache. God bless your courage. In a strange way all family members that have dealt with this horrible disease are survivors.
Just found this blog whilst thinking about my dad who died last October (2014) from GBM after diagnosis only 1 month earlier.
I found it very difficult to read as the deterioration in your fathers condition sounds so similar to what my dad suffered. Having said that I also found the commonality very reassuring.
Still seems very unreal as I approach the first anniversary of his death and at times it’s all i can think about. How can cancer be so cruel? Why him? Why so sudden? I have so many questions which still haunt me.
I will catch up with the rest of this blog. Thank you for sharing x
I just lost my husband of 28 years to this terrible cancer .. He was diagnosed on August 20th 2016 .. After seven months of a difficult journey he died on March 20th 2017 .. I feel so alone now and miss him daily . Your blog gives me hope to go on .. Thank you so much .