One patient with glioblastoma still alive nine years later
by dianar2 on Mon Apr 13, 2009 12:00 AM
I do not want to frighten anyone else so please do not read if you are still fighting the fight. I lost my Denny to a GBM just a little over a week ago. Even though the tumor was 7 cm and inoperable at first when he was diagnosed last October 08' he so believed he was going to make it and had total faith. He fought until the very end until his mind no longer worked for him. The good news is that he did not suffer because we did not allow him to.
I let him go for seven hours without meds to see how much of what he was going through was from the pain killers and how much was the tumor and fluid build up. It was definately the tumor that was causing his mind to go, so we made sure he had meds right on schedule the rest of the time until he was gone. It was like he went to sleep and other than standing to go to the bathroom and his sponge baths, he did not wake up and then he was gone.
His only horrible days were his last two weeks. One day I told him I was scared that he would not make it. He said, I'm trying as hard as I can, Babe.
My heart broke for him because how much more could someone want to be here and how much stronger could they be, and how much more in love with life could a person be. I have so many pictures of him and in every one of them he is smiling and even waving to us ( most of the time).
I now wonder how could anyone be so happy all of the time, and I remember that he was. He was SUCH a gift to all of us who knew him, especially me, the other half of our A TEAM.
I come to these boards because the people here understand what I was going through each step of the way. I do not want to make anyone sad by writing now, but I do not want to give up my support system when I need everyone the most.
Yesterday I had the kids and grand kids over and made a small Easter Dinner. It was nice, but for a moment I lost it.
I guess they understand, it is so hard!
I want to hear from others that lost loved ones to brain tumors and wonder if there is a place that we can go to write to each other that will not frighten others. I am still in shock over losing my husband and the tumor taking over at the end. Even though he did not suffer, "I did" watching this happen. I prepared myself for losing him, but no one can be prepared for the final days when their loved ones have a brain tumor
by Bella117 on Mon Apr 13, 2009 12:00 AM
I did not take your advise and I read your posting anyways. We are still fighting. Your Denny sounds so much like my Dad. Everyone loves my Dad, he's always smiling too and cracking jokes, and was so outgoing, socially active in his German Club before the GBM dx. He is putting up one hell of a fight and still jokes when people ask him how's he's doing, he replies "Not Dead Yet". So we still have part of my Dad left. I am so glad you were able to have Easter at your home surrounded by your loved ones and you know what, it's ok to "loose it" It's part of the grieving process. I have learned so much on this site and have felt that I have become more informed about what questions to ask the Doctors, any side effects that he's experienced or will soon experience. You asked if there was a website or another forum you could use, why don't you start one, maybe create a website of yours and Dennys journey, or even start a blog? But don't forget to tell us all the address......please.
Take care, still fighting, d/o Joe dx. 12/08
by myfroggy on Mon Apr 13, 2009 12:00 AM
I lost my beloved husband and best friend to GBM on March 18, 2009 after he fought it for 14 months, 3 surgeries plus many treatments and hospital stays.
Yesterday was so hard on my daughters and myself having our first holiday without him. All we did was cry. Our girls are 25 yrs old and 13 yrs old.
I still come here and read the posts to get comfort from everyone even though I never posted until today.
Don DX on 1/9/08 passed away 3/18/09
by crob1024 on Mon Apr 13, 2009 12:00 AM
Dear Diana: I know what you are going through. I lost my husband of 40 years (at age 66) on October 12, 2008. So yesterday, Easter Sunday, was exactly six months. I relived his last week every day over the past week. While, at first he had a Astrocytoma brain tumor, and had surgery and radiation, when it came back it was more agressive and he died with a GBM and complicating pulmonary embolisms.
My husband also never gave up and never complained. It was just so hard to see his mental capacity decline to the point that he almost couldn't talk at all, and of course slept nearly all the time, etc. When my father died I was 47, but my sons were only 30 and 34 when their father died. They each have little children, and my grand daughter at 2 1/2 still talks about grandpa Doug with no understanding of where he is... It is sad to think that none of them will get to know what a great guy he was and how he was looking forward to playing with them and watching them grow.
I too come back to this board to see how everyone is doing. I just seem drawn to it. I wish no one on this board had to go through this as a patient or a caregiver. The end is difficult....
by Aacddd3 on Mon Apr 13, 2009 12:00 AM
I am so sorry for the loss of your husbands. My dearest Dave fought for 18 months and won victory on May 21, 2008. When he was alert (until the last 1 1/2 months), he smiled and always though he was going to beat this monster. I miss him so very much. I am reliving what we went through last year this time, and I cry a lot. Sometimes the tears start without me wanting them too. Please let me know if there is a place where survivors can talk. My children also need this counseling. Talking to others who have gone almost through the same things is much more effective than going to a counselor that is just listening.
by Eiredale on Mon Apr 13, 2009 12:00 AM
Dear Diana and all others who've lost someone they've loved,
Yes, there is a place to go where others understand only too well the loss of your dear husband: http://health.groups.yahoo.com/group/bereavement/
This is a bereavement group/list-serve for those who've lost loved ones to GBM or other brain cancer.
I lost my mom on Jan. 21, 2009. She was diagnosed with a GBM on Christmas Eve, 2008. She was a very healthy "young" 77, and she'd never been ill in her life. The diagnosis was a shock. She went from driving and shopping the day before to unable to walk in a matter of two days; her tumor was in the right parietal lobe and resulted in spatial neglect on her left side. She had surgery and the surgeon was able to remove 100 percent of what was visible.
My mom went to rehab to address the spatial neglect; she was working so hard, but it was an uphill battle and she wasn't regaining movement or strength in her left leg. A week and a half after going into rehab, we lost my mom when she suffered a pulmonary embolism.
We are thankful that we were able to enjoy that short month we had between her DX and her death. Though we thought we had more time with her, we used our time well and my only regret is that she is no longer with us and not for anything undone or unsaid.
For those fighting this dreadful illness or whose loved one is, I wish you peace, strength and much hope; for those who've lost loved ones, I wish you peace, strength, comfort, and -- still -- much hope.
by Mikesister on Mon Apr 13, 2009 12:00 AM
My brother lost his fight on Dec. 1, 2008. He battled for 14 months and never once complained. Like others I come back to this website hoping to help someone else in the same situation. The problem is that I cry so hard when I remember his last week on earth. It was difficult as everyone here can tell you and as well as you know. Nothing has been the same for me since "GBM". My brother was a teacher for 30 years and his students absolutely loved him. He left two sons one 36 years and one 10 years old.
I was constantly on look out for a place specifically for caregivers who are/were dealing with brain tumors only. I was never able to find support except through this website.
I am motivated to create a website specifically for brain tumor support for the caregivers. It is a unique situation and an incredibly difficult situation.
I will honestly consider this as nothing feels the same to me and I think if I could clear out the cobwebs... I might be able to feel better and hopefully others will too.
dx 9/22/07 - 12/1/08 MJT
by bpanc on Mon Apr 13, 2009 12:00 AM
Diana, I've sent you a couple of private replies.
by gizmof on Mon Apr 13, 2009 12:00 AM
by heart_and_soul on Mon Apr 13, 2009 12:00 AM
Dear Diana, and all,
I am soo so sorry and sad for your losses. I don't want to be in a separate 'room' from you all though. We can all help each other, I think. I mean, if you need to go to a bereavement group, I hope you find a good one, and I wish you all peace. And if you can find a way to tell us about it here, please know that I don't want to be shielded. My therapist told me that the amount of time I spend on this board is what's good for me... I am preparing my heart and soul for whatever happens. Hope for the best, prepare for the very saddest.
Much love, Sarah
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