Hello to all....! I am new to this message board or any for that matter. Forgive me if I ramble or mix or misspell any words. Lack of sleep and total exhaustion do funny things to caregivers. If there is anyone out there that can relate to my situation I would love to hear from you. My dear, precious,sweet,wonderful,best friend has GBM Brain Cancer. For those of you who dont know what I am talking about, please educate yourself by going to different Web sites and find out what a MEAN and terminal cancer this is. For those of you, like me and my children who know first hand what I am talking about Please,please,please......! Talk to me...! It is such a lonely place to be....! We just found out 9/10/07 He had the tumor removed, yet they were not able to get it all, "Like scraping peanut butter off of white bread" is what I was told. He has had very good care and we like his Dr.s. The pain and suffering is so hard to endure sometime. He was a highly educated man, now, well now he is not. I miss him soooooooo much...! We have been dealing with sever Edema of the Brain. He now has a blood clot in his leg and started with massive swelling in his legs and feet again for the third time. He does not want to go back into the hospital again. We have had a couple of stays. We have started chemo again as the Temador did not work to shrink the remaining mass and Midline shift of the brain. His tumor was on the Right Temporal Lobe. He is Left Side Neglect. I could go on and on. It has been something new every week. He is fading and wasting any before my eyes. We just take it a day at a time and are so happy to be able to wake up in each others arms in the morning. Thank you all so much for listening....! I would appreciate hearing from someone on this type of cancer. I know there is someone out there who feels the sameway , one way or the other...! Again , Thank you...! JFs Loving wife.
I know how you feel. My dad was diagnosed with GBM brain cancer in dec 2007. They were not able to remove the entire mass and the doctors kept saying it was very aggressive. My dad went through chemo and radiotherapy, it was a rough few months but nothing was harder then seeing him tonight. The whole family came over for dinner and my dad could barley walk. He kept asking my mom what the directions were to get to my house so he wouldn't forget. He sleeps a lot but has no real pain. He finished his treatments about 3 weeks ago and we are going for a MRI next week. I am fearing the worse. I don't know if i could handle the doctor telling me that the treatments did nothing and that the tumor grew. I was skiing with my dad in early November, he was perfectly normal, then boom in a few months he looks like an 90 year old man. I hug him and tell him i love him, i try to be strong in front of him and my family but alone i cry.
Hello......!!!!! Thank you for your response to my message, and in the same breath I AM SO SORRY...! I know how you feel. It is nice to know we are not alone. Dont you think? I was moved to tears by your story. It is not far from my own. We were fine after treatment with the tumor that is. We have had so many other complications, however. Our 3rd MRI showed the tumor has started growing again. Our Neuro. surgeon said that he would not operate again. Our onocologist has agreed to another type of chemo. He was taking Temodar. What was your Dad on? I now have home health care to help us out. Simply because ,adding insult to injury, we had a bad car wreck and totalled our vehicle. He was not hurt but I was. Not bad, but enough that it set me back on lifting and doing odd jobs. I am better now, but am so glad I got them to come in because he has started with severe edema again. I am so glad your Dad hasn't had alot of pain. We have had our share of it. How is your Mom? My heart goes out to her....! Being a caregiver is tough and rewarding all at the same time. It is so hard to see a loved one suffer so. You can only do so much and you still feel like you havent done enough. It such a MEAN CANCER....! You take care. Hope to hear from you soon. Please Keep me posted. I am a little slow at responding because of the demand. But Please, If you just need to vent or a good cry...! I am here in the same boat with you and your family....! There is something about a good Cry when you are alone...! I find it very cleansing and healing....! Again, Thank You..................................... ...!
My beautiful Husband John passed on 4/8/08. You can prepare all you want and never be prepared at all. He had a seizure that put him in the hospital. His body starting shutting down. He wasn't able to obsorb potassium any more. He passed peacefully after almost a week of trying to regulate his body. 3 days of very peaceful nesting. We were blessed to be able to share and touch and laugh and dream our last dreams and wishes together. I will continue to pray for your father and mother and you, family as well. Please keep me posted. If there is anything I might can say to ease you, I will. I miss my husband so much. Yet, his suffering and sickness is done. I dont want anyone to suffer as he had for 8mo. Bless you and yours...... mymanjf
I want to extend my sincerest caring thoughts to you on the loss of someone so special in your life and for the pain you have endured watching the devastation of this cancer.
Glioblastoma is such in so many ways a thief. I lost a very special friend, Mike, to this. The very first symptom that this had invaded his brain was during an evening out with his wife when she watched him sit and chat with her while all the time his arm was laying squarely in the middle of his food on the dinnerplate and he was totally unaware of it. They left the restaurant and came to our house. We had all been friends for many years and our children grew up together. The guys yakked it up in one room while the wife and I cried in another. We cried because it was pretty evident that something pretty drastic was happening in Mike's brain. The doctor's visit and diagnosis came in quickly... glioblastoma. As with your husband, it was a quick battle of just months. He, too, has gone home now. Time has passed and sweet and fun memories of Mike have taken over the dark thoughts now.
The patient and the caregivers share in the pain of cancer equally. I know because I have walked both sides of this fence. There is a journey of healing waiting for you, the caregiver, now. It will be hard at times, but there is a place of peace waiting for you. It will be a different place of peace than your husband's, but it is a place of peace. May God wrap His arms around you and your children as you walk together to get there.