I'm so sorry that you are going through this with your sister.
My dad is in the final stage of his Glioblastoma and it was very difficult to get him motivated or interested in anything except eating or watching tv for months. He had the left side weakness and just did not do well with walking on his own.  That frustrated him.
It is very difficult to go through this experience....my dad was diagnosed almost a year ago and we hoped he would have a "normal" life again for some length of time after his surgery and chemo and radiation.  We felt guilty that we could not get dad back on his Harley or driving his truck.  I would take him to the movies or to the Harley shop because at first he wanted to go but when we actually got there he was just emotionless.  It was out of his control.
Just be there for your sister....I know at times it can be really hard and you want to see her doing more...maybe she will get to that point....but she might not.  You are doing all you can for her.  I hope you have a support system in place.  It does help to talk to family or friends about this. 
My father has never really wanted to talk about his illness until a few days ago...he asked my brother and I how much longer he had left.  That was tough....I think he realizes that his time has come.  He has been bedridden since September...he's a tough guy!
The hospice doctor told me yesterday that he has a few weeks.  He has been in hospice since the beginning of December.
Don't ever feel like a failure....this is a beast of a disease!
Take care,
Jennifer


 

HI...I  have a feeling my reply could be pretty  long....I sympathize.   This all stinks...it's hell...how could there not be negativity at times? 
  We as caregivers feel responsible for health decisions, the comfort our loved one, their happiness, their pain, their fear, their finances, their homes and pets, informing family and friends,their transportation, their appetites and on and on.  Are we responsible for ALL of that...I would say no, however, it sure does feel like we are.  
My brother lived  with a grade II astrocytoma for 10 years...during which time he had focal seizures,fatigue and such, but all in all he felt well and did  almost everything...Normal? Hell no...we kissed that good-bye with the diagnosis.  He too had to give up riding his Harley (he had to wait about two years to get it, as he ordered it new..it got delivered in Nov. 1999 and he so, so looked forward to the next spring when he could take it out and spend all summer and fall on it too...He got diagnosed in March 2000.  His son was born in August 1999 (his first and only child)...
He, like your sister, has NEVER shown an interest in learning, really learning, about his disease. He spent those ten years very much in denial and at times that so frustrated me I could  have climbed on the roof of my house and screamed at the top of my lungs until "they" took me away!  It was his way of coping...he did not want to give it up and I had no right to try and change that (not too much anyway :)
In that ten years we begged him to take his son to Disneyworld...they had opportunities to join us on trips to Europe, we begged him to move closer to us...he was in some depression during that time...had old furniture, had old carpeting, he slept on a ancient mattress...he had the means to make changes and do these things...it broke our hearts to see this...if we suggested maybe getting him a mattress as a gift or something he became enraged....And you know what?
When the tumor came back as a grade IV and he could not do any of those things anymore......he would sometimes be wistful about the past and say..."I wish I had done more..."
Quite frankly if I had had a choice between hearing those words and having a hot poker pressed against my back I am pretty damn sure I'd have taken  the poker and it would have hurt  alot less.
When the tumor came back he said once..."I did not know this could happen"...of course he did...it's just the way he chose to deal with it.....Not only does the illness hurt, but so do all the lost opportunities.
However...many opportunities remain. While YOU are NOT responsible for her happiness I sure do get that you want to make her happy and will continue to try...maybe lower the standards and try some little something...we visit  my brother in rehab every day...we take his favorite foods, sometimes we take a movie...last night he was well enough to play cards for a little while!  We tell him funny, stupid stories about things that happen to us...we take his dog to rehab to visit him...we call him on the phone...little things...thats all thats left now...there won't be any trips to Europe or Disney...we just do what little we can and sometimes nothing works and sometimes, like last night, we laugh and joke and walk down memory lane and its a genuine good time....Please...you are being too hard on yourself...just try some little things and if they don't work of course you will be sad, but please don't feel responsible...we can be so hard on ourselves and it just make an extraordinarily difficult situation even more painful.   You are a great sister, she is lucky to have you. Go easy on yourself.

What your sister went through with radiation and temodar is the standard of care and as far as I know, everyone is put on that treatment initially.  Some people do well on radiation and temodar and some don't.  A women we met in our support group had her tumor removed, did radiation, chemo and her tumor grew right back.  She is now on avastin and her tumor has reduced in size and has been stable for over one year now.  

Reading your post makes me look back to the beginning of our journey back in September 2009 when my husband was first diagnosed with a GBM.  He only had a biopsy since his tumor is inoperable so his fatigue began when he was going through radiation, around the 4th week and then when he started the higher dose of temodar, and chemo brain set in (confusion and memory loss), he was having such a difficult time, always in bed resting, which didn't seem to take away the fatigue, he had double vision so he found it difficult to read and watch tv.   I was the one taking care of his medications, doctor appointments, reading about the disease etc., as he was in no condition to handle such tasks.  As I read on the internet that exercise seemed to help tolerate the fatigue, he set out to walk every day (many times not really wanting to but pushed himself anyway) at first for only 20 to 30 minutes at a time. We also started to pray and put our faith and trust in God.  Slowly my husband started working in the garden, walking the dog on hiking trails, visiting museums and started to get back to visiting with family and friends.  When my husband was put on avastin, he felt so much better because it does not cause fatigue and it reduced the size of the tumor.  So as fatigue is caused by the tumor it self, radiation, temodar and weaning off of steroids, its no wonder your sister feels tired, fatigued and has lost interest in everything. The radiation effects take time to leave the body so the fatigue will eventually subside. Your sister is still in the early stages of this disease/treatments and with time she will hopefully start feeling better.   You are doing the right thing to encourage her to keep pushing herself to get back to the things she use to enjoy.  Perhaps your sister should seek counseling as she could be depressed or a support group that will give her understanding she is not alone, acknowlegement of her feelings and encouragement to push through.  

As an answer to your questions about my day to day life and my feelings, I was a wreck, crying all of the time and had lost hope.  Reading the statistics I was overwhelmed with the possibility of losing my husband and I was devastated.  If it wasn't for my friends encouragement to place my hope and trust in God I could not deal with everyday life.  So now I know that God is walking with us through this journey.  I read scripture and daily devotionals and I know that He is the only one that can give me peace.  We have had our ups and downs and many physical ailments along the way but we manage through them.  I still have moments when I am alone that I cry to release the stress, as we live with disease, and our fear of the future, but I also have to credit my husband's positive attitude and at times lifts me up when I am down.  We live day to day, appreciating God's gifts and the people he has brought into our lives.  I pray that your sister improves and she is blessed to have you to walk this journey with her.

When my husband was on chemo/radiation, he had the same symptoms as your sister. I thought that would be our life to the end.  As everyone says, it DOES wear off when they are off of it. His tumor returned and he had a second surgery.  The tumor returned again snd he is now doing well on Avastin.  He is a very positive person but really shows no interest in educating himself on his disease. I do all his finances, take care of what needs to be done around the house, do all the driving, and taking care of medical/insurance issues.  I know he feels bad he can't do what he once could - he says he feels like a functioning illiterate, as reading, writing and speech are all compromised. He gets overwhelmed when there is too much stimulation so I try to limit crowds, noisy places. If we go to dinner, we go at off peak times so it is not as crowded.   When his friends ask what they can do with him, i suggest movies, because he doesn't have to do a lot of talking. There are so few things they have control over and I think he feels most comfortable and secure at home. Because I'M bored, I do make him go out a few times a week! Don't feel guilty about ANYTHING! We put so much pressures on ourselves to do everything correctly but that is self sabotage! It sounds like you are doing a great job. I ask my husband if there is anywhere he wants to go or anthing he wants to do before his time is up, but he feels content and less stressed to stay close to home.  For my own sanity, I do make him go on mini vacations but I know he is always happy to get home. Remember to take care of yourself too! Hang in there...

My sisterskeeper,
I'm not sure if you have been told lately but YOU are a wonderful sister.  This diagnosis is so devastating to the patient as well as the caregiver.  We all try hard to make their lives comfortable and if we can add some enjoyment  that is a bonus.  Trying to keep the normal things in life can be a  challenge but I think in the end it is worth it.
My husband has the same way of thinking, he doesn't want to hear the diagnosis, doesn't want to learn about it.  I look after all his medications and  get him to all doctor appointments.  Any of this news upsets him so we just try to put as much normal in our lives as we can.  That does make it very hard on the caregiver as we shoulder alot of responsibility.  I to, try to educate myself as much as possible so that I can make informed decisions when needed.  I wouldn't be anywhere else but there for him, beside him.  I am sending you a hug today, please remember to love and take care of yourself.

Dmayeux.  Good morning.  Gosh, you sound just like me.  I remember the first couple of months I felt like the protector and warrior.  I did everything!  Everything!  I just couldn't let others in.  Now, it has been 4 months and I have calmed down a bit.  I am still in charge of everyday life as Bob cannot be consumed with any of them anymore.  I have taken over many of his tasks.  Thank God I have our youngest son who is so helpful and supportive.
Bob continues to stay busy with exercise and projects around the house.  He is still capable of doing that (with a little help from his friends and myself.  I actually learned how to install canned lighting and connecting them to wiring).
Bob personality changes are that he is alot kinder.  He has become a bit OCD and will focus on one particular thing for a certain length of time.  He likes to  spend $ which is very different from my other Bob.  So, I have to watch him and how much he takes out of the bank or wants to buy things on ebay.
God entered Bob's life which made me so happy.  He now goes to church with me and reads scripture every day.
The uncertainty of life has become so real to me.  I am consumed with every monthly doctor visit and learn there might be bad news.  However, I appreciate each day I have with Bob and make plans to go out and do what he wants to do.  Take as many trips as we want, although he suddenly has a fear to leave the country...weird.
I am here for the long term (I hope for the long term).  My hearts goes out to all of you who are caregivers.  People just don't understand what we go through.  Friends look at Bob and say how great he looks and well he is doing.  Of course, they don't live inside our home and see what really goes on and sometime I just want to yell out and say, "MY HUSBAND IS SICK!"
Continue reading, continue educating yourself.  But don't make it your lifes course.  It will drive you nuts!
Blessings to all.
Susanne

MySistersKeeper, I can so relate to you. I recently lost my mother to GBM just 11 short weeks after her diagnosis. The radiation/chemo made her so weak and tired, and in the end her immune system was so low that pneumonia/respiratory failure took her. However, on a more positive note, just relish the time you have with your sister and don't put pressure on yourself to encourage her to do "quality" things. As much as I wanted to force my mom to do things and enjoy the little time she had left, I settled for laughing, joke telling, reminscing, looking through old pictures together, singing Christmas carols, etc. She was in a wheelchair for most of the time but loved for us to walk her around a lake in her neighborhood (when she wasn't feeling too weak). We also had friends and family visiting as much as possible (my mom was a social butterfly and loved the interaction even when she couldn't partake in the conversation). You are doing a wonderful job with your sister... caregiving for this monstrous disease is far from easy. Try to get decent rest yourself, and savor all the little things in case they the last memories you'll share together.

MySistersKeeper,

My husband just recently passed from his GBM.  He did fairly well between the radiation and chemo.  He too was told that the tumor was growing and was started on Avastin.  This did not help.  He had five treatments and during that time I noticed much of what you have described in yous sister.  I thought it was the Avasitin, but was told by his oncology NP that it was not.  I came to this community to get answers.  I felt in my heart that the tumor was growing and there was nothing I could do.  His last MRI confirmed my suspisions. 

Let your sister do what she feels like doing even if it is napping.  Give her whatever she wants within reason.  The tumor and its effects are her life at this point.  Keep her schedule as close to normal as possible as that will help you with her care.  Do not feel guilty.  I trust you are doing as best as you can for your sister.  It is an emotional roller coaster and requires much patience.  I believe that spending their last days doing something besides the cancer is all but impossible.  It takes all the energy they have to function through the day let alone doing anything else.  We read to my husband when he wasn't sleeping.

I understand how you feel.  It is a helpless feeling to watch someone you love so much go through this disease.  I felt much loss with my husband.  I was grieving as I took care of him.  All the little things we did together faded away day by day.  All of what he was to me was taken away.  I loved him so much, but even that did not help.  I watched him deteriorate every day.  As it drew closer to the end, I would pray that God would take him swiftly as I could not bare to watch him go through anymore of this awful tumor that is bigger than all of us. 

I am so sorry you are going through this with your sister.  All of us are here for you and we are keeping you in prayer.

I remembered that when was first diagnosed in the hospital she developed diabetes from the Decadron and required insulin. I questioned why they weren't testing her sugar at home when she is on Decadron and was blown off several times. Last week I got a bit more demanding they gave us a sugar monitor and yep her sugar is high, very high. So now I give her two different types of insulin throughout the day. And guess what?? She is almost herself again. We as caregivers have to stay on top of things, we need to always be thinking and pushing. An example of how well she is doing. I had to get a toenail removed and I was really nervous. She came with me and she took over, asking questions, comforting me (holding me down actually lol) she talked to me as I drove home because I was still sort of in a nervous state. She remembered all the doctor told me to do with my toe at home and keeps after me to do it. It brought me back to the way it always used to be, her the strong one, me the baby in our relationship. I cryed not realizing how much I missed our regular roles we have palyed all our lives, until lately
She starts her Avastin and Chemo in a few days...
Thanks to all of you for taking your time to write and make me feel better

I am SO happy to hear that your sister is doing better and YES!  we sure do have to keep on top of things....she is very lucky to have you looking out for her and thank goodness you pushed the issue with the blood glucose.
Your post just so touched me...It brought me back to what quite frankly feels like almost a fantasy world from my past...except it is no fantasy...it was my life with my brother...George is 6'5" and back in his weightlifting, baseball, football, basketballl playing days he was one tough looking guy (but a teddy bear inside)...he protected me, looked after me, fixed everything for me, came to my rescue ...I was always the one in need...your post made me remember that so clearly ...I could feel the memories surging through me...thank you for helping me remember that (even  though I'm sitting here with tears pouring down my face from the memory of it) :)    It kind of gets smudged away in this world of chemos and wheelchairs and doctors appointments ....as stupid as it sounds it actually does all sneak up on you. I am so glad that you got to  revisit your "before brain tumor" roles in your relationship with your sister....my brother is now and always has been my rock, as I'm sure your sister is for you too....there is no damn tumor in the world that can take that away is there?
I know you and your sister are nervous about Avastin and CPT-11 tomorrow...we only have experience with Avastin, but I was scared crazy about George doing Avastin and it has gone very well for us...tell your sister all the positive stories and know I will keep you both in my prayers......Hope your toe is better!
Darlene

I have been following your posts and I love the relationship you have with your brother. I have never been close with my 2 brothers and I kind of regret that. Gwen is my brothers ex wife but we call each other sisters as we have been best friends for 45 years. She has always been the dominating one in our relationship, now it's me. She fell last night, outside, I had to call my son because I couldn't get her up. It is like a roller coaster with bad days after good ones. It's like just when I think I see the sun start to shine it starts raining again. We go for her first treatment in an hour. I heard all good things about Avastin but bad things about this CPT-11. Of course I didn't tell her that. Please stay in touch with me, I would like that