Downhill...

6 Posts | Page(s): 1 

Downhill...

by Kblkbl on Sun Sep 25, 2005 12:00 AM

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Hello, My mother was dx 1/05 with GBM IV. She had surgery, radiation, was treated with Temodar and is now on Tarceva after the Temodar wasn't working. She was doing alright until 6/05. Then she started having seizures, she developed short term memory loss, and had a lot of trouble walking. Today she still has those symptoms and they are all much worse - minus the seizures - they seem to have stopped. Sometimes she can barely walk. She can remember long term things (names of people, who they are in relation to her, what town she lives in), but a lot of the times she forgets almost everything. She sometimes doesn't reconize my father, my son, or myself. She is disoriented 99% of the time. She's is having trouble forming sentences (she uses different words when we know she means something else). She cries constantly about things that aren't actually real. She forgets that she has a brain tumor. She doesn't know where she is at any time... I prepared myself for this - what I think the worst is - but it's still so sad and I don't know how to deal with this... but I am every day. I'm living at home with my father and my 2 1/2 year old son and we're taking care of my mom. We have no help. It's horrible what she's going through... my heart breaks every day. Is anyone else's loved one experiencing these symptoms? I apologize for the melancholy post. I know everyone's different with this illness but I'd just like to talk to someone who is at the same stage as I am through this... :(

The Pain

by Mitch21 on Mon Sep 26, 2005 12:00 AM

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Hello, My father was diagnosed in late December of 2003 after severe memory loss and seizures. They gave him 6 months. He just turned 59. He underwent two surgeries in January and February of 2004, radiation for 7 weeks, and several chemotherapy drugs ever since...he is having surgery at Duke at 6am tomorrow to remove another "mass" which we hope is necrotic tissue or an absess (sp?) but are expecting the worse (another malignant GBM). Up until a few months ago, he was doing ok. He is having severe trouble walking, seeing, and forgets where he is every day. He says all the time that he is not ready to die. There is no way to describe what friends and family go through-I wake up everyday to a living nightmare, and would not wish this on my worst enemy. Watching this horrible disease take away the life of my father day by day is killing me-I get pains in my stomach that are indescribable. I only hope the best for you and anyone who goes through this horrible experience.

Downhill

by Garland on Mon Sep 26, 2005 12:00 AM

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Thank you for being such a kind and loving caregiver. those of us who are pts don't really know the heartache you guys go thru. we are sometimes so engulfed in ourselves we fail to see how those around us feel. But,i can assure you, she does not intentionaly mean to inflict pain or hurt on you. You really can't tell what is going on without an MRI. I would go back to doctors and let them know everything that is happening and get another MRI in order that they may check for new growth etc. Many symptoms you describe will clear up with time. she has had the standard treatment and maybe they need to change her medication. Sometimes adding or subtracting meds makes a world of difference. I had a lot of those and all it took was to get meds leveled out and you can't do that in a day. I was dx in 03/05 malignant, inoperable, and most people would tell you that i am normal today. (they just don't know). OK, you asked for advice...I know this sounds strange, but quit worrying about her. Sounds to me like its gonna make you sick also, then what is she gonna do? You need to give her the level of respect she deserves as your mother, and the level of love and treatment she deserves as pt. There is really nothing you can do apart from the prescribed treatment and a good positive attitude. Quit focusing on dying and start researching living. This will change your whole attitude. Don't focus on things that are wrong...look for things to be right. I know this from personal experience. it's ok to be down, but its not ok to stay down. you are loved and appreciated by every pt that comes on this board and knows about you. we will all be praying for you and let us know how things turn out Atlanta, Georgia

Get Help Now.

by Cidorov on Mon Sep 26, 2005 12:00 AM

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No doubt. You have the hardest job there is. Garland is right. You have to take care of yourself or you wont be any good to anyone. There are resources out there. Many times the local community mental health center has "respit" care. Here in Spokane, WA they will provide someone to come in on a regular basis to give you a break. It is income dependent. If yoou dont qualify then they can help you find someone affordable and experienced. It may be difficult to break away but you dont want to wait until you deteriorate. Most of these programs exist in many places and sometimes you just have to ask the right person the right questions. Unfortunately these programs are reactive and not proactive. As a result, the folks who need them the most are the least likely or able to access them. Even if that particular help is not available you will at least get connected with the local system and see what it does have to offer. There are numerous government grants that fund community based programs. I am willing to bet there is one you may get help from. Do it now. Dont wait. You have a very difficult job and you dont have to do it alone. God bless you for the love you are giving. Bob Spokane, WA

Thank You :)

by Kblkbl on Mon Sep 26, 2005 12:00 AM

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Hello again, Thanks for your replies. It really helps to hear back from people who are going through similar situations. When I said we have no help... I meant more it's just the four of us in the house (my parents, and my son and I). We don't want outside help right now as we are managing. But thank you for your suggestions... I'm sure - or maybe not! - there will come a time when we might need hospice etc. I am concentrating on my mother still living, not dying... though at times it's impossible to see any good out of what she's going through. There is very little quality since she is so disoriented and confused every minute of the day. It's so hard. I read somewhere else on this board that this disease has to be seen to believe it... and it's true. I've never had anyone close to me ill and now it's my mother :( She has regular MRI's and they show that the tumor is not growing right now but her functioning levels are all going downhill. Her oncologist said that even though the MRI's show no change - things are deteriorating with her functioning. So they took her off of Temodar and started her on Tarceva... sigh. I am trying to be hopeful and think that this is just a "bad few months" and that maybe she'll get better... but I've also accepted the way she is now. I just feel so terrible for her. She doesn't even know she's sick most of the time and can't understand why we need to help her with everything. Thanks again for responding :) My heart goes out to all of you caregivers or patients. I am here too for anyone that would like to talk. Take Care :)

my Husband dx With Gbm iv 9/13/05

by Triciaphil on Fri Sep 30, 2005 12:00 AM

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I'm just getting use to the fact that my husband has brain cancer and Glad that he has made it though the sugery. Dr. Keith Rich here at barnes Jewish Hospital in St. Louis Mo. was able to remove the 5cm tumor and place Gliade chemotherapy wafer in the cavity where the tumor was removed and has not yet started the chemo and radation yet but, I just want to tell you its hard to see your loved one go though this and I wanted you to know God has got me this far and when I feel really bad after leaving him at the reabulition hosp. I talk to God and pray and he helps easy the pain. The power of prayer is all we have to hold on to. God is there for you. You just need to reach out and he will not give you no more then you can bear and believe that and know that he is always there. I will keep you in my prayers and believe God will heal your mother and give you the strenght you need in this bad time. Tricia God bless you.
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