One patient with glioblastoma still alive nine years later
by Laura412 on Thu Jan 28, 2010 02:08 PM
I made myself read the timeline last night on Brain Hospice. It's hard to believe, but I think we might be in the 3-6 week range?! At least 3-6 weeks before bedridden.
My husband is showing many of the cognitive signs. He has a slight shuffle in his walk. You can definitly hear him coming down a hallway. Urine is very dark, but other than that, he is doing very well physically.
I know eveyone is different.
Has anyone else found the timeline to be fairly accurate?
I haven't contacted hospice, mostly because he will not agree. ( I havn't ask if I can do it with out his permission.) Actually, he has declined mentally to the point that I probably could use the power of attorney. Okay, I'm having a converstion with myself..lol. I'll check on that.
your thoughts are always appreciated.
by heart_and_soul on Thu Jan 28, 2010 02:58 PM
Laura, someone the other day here said that her husband didn't want/need hospice so she said to him, "It's to help ME." I thought that was respectful of his decision and also stating her own truth.
I can completely imagine that being the case here. With Andy's MRI showing progression yesterday, I got a real look at the 'work' he's done, way down inside, at accepting the reality of this disease and his likely premature death. Not liking it, but acknowledging it.
I wonder if your husband will at some point let you know that he knows. It's hard to let someone know something so awful, so private. But he's an intelligent man. His will to overcome it has so far prevented him from open discussion. I wouldn't be surprised if it's around the corner.
I've heard from many people that the BH timeline was more or less accurate, once confined to bed. Except that sometimes the coma/sleep can go on for more days than you thought they would... depends where the tumor is and how it affects Executive Function (isn't that the oddest phrase).
I have a hospice caregiver on alert. Hope we won't be activating the plan for a while but another thing we've heard again and again is "Wish we had called them earlier." Not just for bed and bath issues, or even for pain issues, but for emotional comfort to everyone in the house.
Sending TLC to your weary heart, my friend.
m/o Andy 27 dx gbm/pnet 1/09, currently in active progression
by gbmwife on Thu Jan 28, 2010 03:19 PM
It's fairly accurate has to the order of the symptoms. The timeline can be off. I found Fred would hit a plateau and stay there for a longer time than the website suggests is normal but other stages he "galloped" through. As Sarah said the coma lasted a lot longer than "normal".
If your doctor thinks nothing else can be done to treat him and the tumor is progressing, then call hospice just to get info and have them on board. Remember I'm the one here who isn't the most sensitive but you need to do it for yourself. They will talk to you without his permission.
Also I am going to say something here that is not very PC but brain tumor patients do not always or, usually in my limited experience, think straight even if they are not facing their own mortality. The tumor, treatments, swelling, etc. have all taken a toll on the connections up there and they have not a totally rational sense of how their actions and words affect others. They also do not necessarily have a good sense of their limitations.
Peace and love,
by gbmwife on Thu Jan 28, 2010 03:36 PM
The other thing is its not hospice which many interpret as death, its palliative treatment. Fred's whole GBM treatment was palliative. An attempt to give him a longer and better life. He, on some level, and I knew from the beginning there was no "cure" for the tumor. His was multifocal at diagnosis and its was always a desperate attempt to prolong the best life he could have.
Please read my posts from that prospective. I also thought that my quality of life had some value. I always put him first but I did not buy into the "after I'm gone you can have what you want" pity party he would try to guilt me with when I would say no to a demand that was too much for me or just plain wrong for him.
So I guess "hospice" is a continuation of their treatments just an acknowledgement that there is less that can be done.
by millyppl on Thu Jan 28, 2010 04:04 PM
Laura , Please do what is best for you both! Most of us live our life for the loved one with cancer ( i do). If that is what you have decided to do then go as long as it is right for you. Just keep in mind pain control, we are very fortunate that Davids pain is under control, I know there will come a day when I may not be able to say that. He has told the doc he doesn't need hospice he has me. In our case that is true, we have lots of support big family and lots of love. Not everyone has a bunch of medical peops in their life and if you need to call them in for you then do it. You have to keep going when this is done. As stated before one lovely lady convinced her hubby it was to help her, if thats what it takes do it.
Also you cant go by a time line, my darling has been doing the shuffle for months, he actually got better when we took him off of all the treatments, even his doc said I cant do anything else right now as I CAN DO NO HARM. He just kept repeating that, it breaks his heart to loose the battle with any of his people. So keep in mind that many factors can and do change the time line.
I send you peace and prayers Milly
by rheaj on Thu Jan 28, 2010 05:15 PM
I would call hospice as someone stated sooner than later. Do not wait till the last few weeks. I manage a unit where we care for a lot of hospice patients in the hospital and can say I too hear that from families over and over that they wish they had called sooner. They can be a wonderful service for the patient and the family. My prayers are with you.
by passionfish on Thu Jan 28, 2010 08:25 PM
We found with Marilyn (my sister) that the timeline was almost spot on...it skipped and jumped around a little bit , the hospice workers had mentioned that GBM is slightly different as far as symptoms going in order. I went to the brain hospice timeline over and over during her final two weeks and it was very helpfull...
We will all be sending good thoughts your way :)
Adonna sister of Marilyn dx 7/28/09 died 12/21/09 :(
by shabby1966 on Thu Jan 28, 2010 09:50 PM
my brother was referred to hospice 2wks ago (jan 19th 2010).. the day before the hospice caregiver was coming out i had a real break down because i knew that my brother lifeline is short.. the day before the hospice appt he was rushed to the hosp and admitted went into a coma the next day for a few days ..we thought we had lost him well thanks to god he has come out of his coma. doing great so far but has to be admitted to a hospice facility..
by arvesta on Thu Jan 28, 2010 10:38 PM
Pretty accurate for us with notable symptoms from each area. At one point the hospice nurse mentioned that we would be surprised how quickly the symptoms can progress and change. Yes ,We were surprised how quickly the last 2 weeks took a toll on the systems. While the last few days range was the lesser of the number range. Everyone again is different depending on this and that. However, overall we found the brain hospice website and nurses to be pretty much as the best helpl as guide light in all ways and tremedous in emotional support. We still had family and friends bedside 24 7 and the care received from all the hospice staff involved warmed our hearts at a difficult time.
by MsRoxy on Fri Jan 29, 2010 04:10 AM
Laura I don't know but I just wanted you to know that I am asking the might angels to be with you and bring you some peace my sister. Roxy
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