One patient with glioblastoma still alive nine years later
by Otherslost on Sat Feb 09, 2013 03:53 AM
by NINA78 on Sat Feb 09, 2013 04:05 AM
On Feb 09, 2013 3:53 AM Otherslost wrote: Two days ago my mom could not walk, stand or talk so her husband took her to the ACU at Huntsman and they did an EEG and an MRI. The MRI showed tumor growth which means the Avastin is not working. There is nothing more they can do and recommended hospice immediately. My brother and I went to visit her last week and even though she could get around and kind of talk we knew she was declining. Huntsman said she can stay until hospice is set up at home. After hospice has a chance to evaluate her I will be flying out. The doc said it could be 2-10 weeks or even longer. Hopefully I can be there when the time comes.
I don't even know how to say goodbye to her. This battle has lasted just over 14 months and has just been awful. I need to be there for her husband who has been the best step father you could ever wish for and has done so much for my mom.
I need her disease and battle to mean something and smack me upside the head to remember what is truly important in life. I have given up so much for my work over the last 20 years and I never fully realized that it can be taken away overnight. Family, friends and exploration of our beautiful world should be at the top of everyone's list of priorities. My promise to her is to take extra time this year to do the things I have put off for so long and to make sure I don't lose sight of the truly important.
I don't have a question, I just needed to write something somewhere where others would understand.
I know there are a lot of you that are at this point or recently lost your love and I wish all of you the strength to wake up and live your life and make our loved ones happy and proud as they look down upon us.
On Feb 09, 2013 3:53 AM Otherslost wrote:
Thank you for the beautiful writing and I am sorry for what is happining right now to your mom and what you are going through. Yes, I felt the same as you do. I spent so much time studying, working and ignored what was important in life up until my mom dex. Nothing I can put in word to ease this pain other than be strong. Nina
by NINA78 on Sat Feb 09, 2013 05:52 AM
by Hopefuljen on Sun Feb 10, 2013 05:51 AM
by NINA78 on Sun Feb 10, 2013 09:34 AM
On Feb 10, 2013 5:51 AM Hopefuljen wrote: I am so sorry to read about your mum, My Dad has been battling this monster for 2 yrs and 8 months. (Right frontal lobe gbm) He fought like hell and now too the time has come to say goodbye. He is in hospital now, cannot walk, no balance, left side is completely gone, cannot swallow thin liquids and only whispers and always has the need to pee. Most of the time he just stares, with very little interaction only mess are anti seizure and Panadol. . Our life is in limbo, we have been told by the Dr he could have between 1-6 months. This is not living, it is cruel and as horrible as it sounds I want his pain to end. I am scared for him I cannot stand to see him like this, he is humiliated.
On Feb 10, 2013 5:51 AM Hopefuljen wrote:
I am sorry about your dad. But he does not know it. When they leave us we feel relieved that they are free of pain. Yes it feels like our life is in limo. But then I think she; my mother, is my family if she is not here then what would be life after her? Part of my life was my mother and I should not have felt that my life was in limbo. It is all toward me and please do not take it personal. I went through all these feeling that you all feel and been there but now I question my priority in life. It is family then career. It was part of my role in life to take care of my mother, spend time with her. Oh there is so many questions now. I miss even days sitting by my mom bed side 12 hours a day or more listening to some of her favorite songs over and over again. Repeating a story over and over again. I knew those days won't repeat so I sat by her bed side, hold her hands, kissed her, and smelled her over and over to hold it with me knowing that I won't have her by me next year this time. That my mother, and my best friend would be gone.
by bradsangel on Thu Feb 21, 2013 11:45 PM
I'm very to hear about your father. Its the worst feeling in the world to know that you can do nothing to help the ones you love when they need you. My fiance battled DIPG (brainstem tumor) for 14months and we really thought we had this thing beat. August 2012 we had to admitt him into our local hospital and than hospice. 4 days after being admitted we made the hardest decision yet. to stop all meds as they were just slowing down the inevitable. it was the hardest decision but the best one we could have made, he was miserable, he wasn't able to talk anymore, couldn't swallow walk nothing. We had to say our goodbyes the next day, and looking at it now, six months later, I'm glad for the decisions we made. I felt almost relieved that he was not suffering anymore, and that he was finally at peace. It doesn't change that it will be forever one of the worst and most difficult periods in my life but it changed me as it does to everyone. I feel I put a little more effort into things I do and I know he's always woth me and guiding me. I don't fully understand your heartache as its your parents but you're not alone, and if you want to know anything please feel free to ask and ill help in anyway possible. We're all connected in how we've been affect by this disgusting monster and how we all have the same dream.. to cuee cancer!!
by bradsangel on Fri Feb 22, 2013 12:00 AM
Before my fiance passed away he made me promise to be happy again, to smile, laugh, do everything I want (crazy or not) and the biggest thing for him was to love again. So Ive chosen to do one thing a month in his honor for a year. So far I've got two tattoos in his memory, flew to LA to put my hands in the harry potter mold on the walk of fame (he was obsessed with Harry Potter) and made a complete fool of myself at karaoke singing his BSB song. The most important lesson I've taken from this experience is love unconditionally and do sweat the small stuff. Life is short no matter how long you live and you need to embrace every moment possible! I'm sorry you have to go through this but you are not alone. If there are any questions you have feel free to ask and ill help however I can! I'm sorry this is happening.
Be strong and remain positive and faithful. Half the battle has been fought and your battle is what comes next. Remember life ends love doesn't and your mother will love you forever, as you will always love her.
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