One patient with glioblastoma still alive nine years later
by suzanne55 on Mon Nov 12, 2012 02:38 AM
My husband went into the hospital last Wednesday. He was feeling really weak and some neurological symptoms popped up suddenly. We went through Emergency, and he was admitted with pneumonia. For two days, the docs in ICU were matter-of-factly saying it was probably tumor progression that explained the symptoms. I was in shock thinking, this is it. Finally, they did an mri that looked unchanged from his last one, and the neurologist told me that sometimes an infection can worsen neurological symptoms, which will then improve as the infection is controlled. He is getting stronger and some of the symptoms are improving. I never thought I'd be so relieved to hear he "just" had pneumonia!
But the thing is, it drove home the knowledge that this or something like this is going to happen again and that it will be for real one of these times.
Our sons are so helpful, but they're young (18 & 21) and need me to be strong and optimistic. I'm trying to be strong, but this week while he's been in the hospital, I try to run an errand or get a little work done, and all I can see are normal people carrying on normal lives, and it feels so unfair and so lonely and I find myself holding back a lump in my throat all the time.
I know I have to survive this, but sometimes I don't know how I will. He's been my best friend for almost thirty years. What am I going to do without him? How am I supposed to watch him change into someone I don't know and have my heart not break? I can't remember his real voice sometimes.
Sorry to vent. I know that everyone here is having a rough time. It's comforting to have a safe place to let it out. Sue
by ravirajagopalan on Mon Nov 12, 2012 03:16 AM
by kim55 on Mon Nov 12, 2012 10:51 AM
Suzanne, I know what you mean about people going about their normal routines, while we are dying inside. My husband was diagnosed 25 months ago, and is now in a nursing home, and my heart breaks every day, along with my anxiety and panic attacks, my days aren't too great. I too have 2 boys (23 & 31) I don't know what I'd do without them, but it breaks my heart seeing them hurt like this.
I've never been alone in my life, and have been married for 38 years, but have been with my husband since I was 14 and I am now 58. I don't know how I will carry on without him. I miss hearing I Love You, I miss him holding me and I think most of all I miss telling him my problems and having him solve them. I feel like I have no one to talk to when I'm having a real hard moment. He always fixed everything. I do have hospice counselors and they do help, but you can't tell anyone things you tell your spouse. I ask God for help every single day because I just can't do this alone.
by suzanne55 on Mon Nov 12, 2012 09:54 PM
It is so true what you say about the things you can tell your spouse. I can't count the number of little inside jokes we have, or the thoughts we share about our kids as they are making their way into adulthood. No one else wiil ever share the love that we have for them. There is just so much shared history - a lot of things can go unsaid and be understood between us.
Wow 38 years! That's a long time! I'm sending a hug across how ever many miles. I know it doesn't make it any better, but for me it feels a little less lonely. Sue
by loveiseternal on Tue Nov 13, 2012 02:02 AM
Your sentence "I know I have to survive this, but I don't know how I will" reminded me so much of how I used to feel.
My husband passed away after a grueling 28 month GBM battle. I told someone that my heart was being broken over and over again, and the pieces of my heart that were laying around were being ground down to sand. It was so far beyond heartbreak.
But, somehow I did make it and I was there for him at the end. I guess I really focused on how I couldn't let him down or my sons (ages 11 and 14).
So your heart will break but you can make it. I prayed every morning for what I needed to get through that day:
"Give me this day, my daily bread"
Hang in there and God bless. Sally
by suzanne55 on Tue Nov 13, 2012 03:13 AM
Thank you, Sally. I'm so sorry for your loss.
by cayus on Tue Nov 13, 2012 04:28 PM
Oh, Suzanne I feel like you took the words right out of my mouth. My husband has been fighting for almost 11 months. I too carry the lump in my throat and look around at normal people around me and wonder how am I going to get through this everyday. I try not to think about that day when they are going to tell me this god awful tumor has grown. My husband is a fighter. I believe he fights for our two boys. (10 & 7)
I will keep you in my prayers
by phyllischarles on Sat Nov 17, 2012 02:17 AM
Thanks for venting...I need to vent so I understand...I don't know what to do...Do I continue to work or go on sick leave to be with my Husband....He just had the tumor removed 3 weeks ago and will be starting chemo & radiation on Monday. He is losing his stability on his right side. But walks normally he just doesn;t know when his leg or arm will give out. I dont know how the radiation will affect him. I found him crying the other day after he fell and almost dropped our grand-daughter. This is killing him in more ways than one. My stomach is always in a knot and I cannot concentrate at work anyway. I want to take the time off but feel its really going to be needed later. But I want to enjoy him now before we enter the worse stages. I DONT KNOW WHAT TO DO.
by suzanne55 on Mon Nov 19, 2012 05:02 AM
It's a scary trip, no doubt about it, and I don't think there is a right answer to the "what to do" question. As far as work goes, I work for myself, and thought I could keep working, but the lack of concentration you mention, along with the just plain exhausting work of taking care of my husband and everything else finally forced me to take a leave. It's been 14 months since his diagnosis. Sometimes I miss working - even as an escape from this stressful and heartbreaking situation. Plus I know I will have to get back to work someday... That said, I am grateful for the amount of time we have been able to spend together.
I hope your husband's treatment goes well! Mine has felt pretty good throughout (7 weeks of radiation, Temodar and Avastin). Good luck!
by CarmensWife on Wed Nov 21, 2012 09:15 PM
My heart breaks for you, I totally understand where you are and what you are saying, my late husband fought brain cancer for 2 years and 10 months.. i have counted the days its one thousand fifty four days.
Like loveiseternal has said, you will make it, as rough as that sounds, The point in your journey now is just so hard, the lump in your throat, the constant knot in your belly, i remember saying that i was always afraid, just plain afraid...it was so bad that when i was at work if somene dropped something i would jump out of my skin, thinking my husband fell, and he wasnt even there, its a very difficult time, for EVERYONE
When you said you see people doing ordinary things that hit me hard too, i also remember seeing people laughing or holding hands in a store and it killed me inside... all i can say is you are not alone, and you and everyone dealing with this god awful disease is being prayed for... constantly.
God Bless, Linda
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