How to help a friend?

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How to help a friend?

by BrendaP on Fri Feb 22, 2019 06:29 PM

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My closet friend was hospitalized April 28, 2018. following a major seizure. The original MRI was inconclusive regarding the cause. She was put on anti-seizure meds and had various follow-up appointments with different specialists. On July 5th she had surgery to remove a small tumor. After surgery was over, the surgeon told her husband that he removed it all and that he believed it to be malignant but she would probably just need to take a chemo pill every day for a while. My friend refused to tell anyone the pathology results when she got them. I told her that would leave us to assuming the worse, but we are here to support whatever decisions she makes. She did tell us about her treatment plan and mentioned that the tumor had tentacles. During my research on brain cancers with tentacles, and based on her treatment plan (Temodar and radiation), I figured it was most likely anaplastic astrocytoma. Then at the end of August, she told me her radiologist said she has the same cancer that John McCain had (he had just died). I exclaimed, "You have a glioblastoma?!" She said she wasn't certain. 

The higher-dose Temodar regimen that followed the original lower dose and radiation was started in November but only continued for two months before they told her they wanted to do CyberKnife instead. An MRI mid-January showed the presense of the tumor which they were told is about half the original tumor size and tendrils are present. She finished her 5th CK treatment Tuesday morning 2/19. While grocery shopping with her husband that afternoon, she had a seizure and her husband drove her to the ER. The seizure was caused by edema. They were told it was not a result of the CK and more likely from the original radiation she finished nearly six months ago. Does this make sense? I have read that the side effects of radiation can worsen over time, but the side effects I read about were cognitive issues.

I realize everyone deals with this devastating illness differently. My friend has stated outright that she does not want to look up any information on the Internet about any of it. (I bit my tongue.) I know that her husband did some research on her doctors (surgeon, epilepsy neurologist, oncologist), and they both seem satisfied with being at their mercy to tell them all information about the cancer, treatment, side effects, etc. They become defensive when asked things like, "Do you plan to seek a second option?" When I commented that a symptom she has is a side effect of radiation, I got a disagreeing response, "The doctor did tell us that." It is so frustrating to watch while my friend avoids learning about her illness and treatment options that could possibly prolong her life. My husband and others tell me to leave them alone and let them deal with it in their own way, but I can't stand by and do nothing. I want so much for her to get information from other sources that I ordered Ben William's book to give her this weekend. Is it wrong of me to do so? 

RE: How to help a friend?

by Macpudd on Sun Feb 24, 2019 12:30 AM

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She wrote me a letter and she wrote it so kind
She put down in writin' what was in her mind
I just don't see why I should even care
It's not dark yet, but it's getting there...............................

Sorry for my answer, but I feel leke your friend, I have friends and sisters and one of my children telling me get second opions do this alternative or the other, I ve fought colon cancer last four years and gbm4 last year its back now and biggrt than what was removed, i m tired. My wife understands she does the hevay litfing, when im gone i hope she meets someone  that will love her like I was able to do and make her happy and look after her. It is wrong to go against what your friend told you. I dont want to be rude towards my friends etc but i will lose the plot if thye dont stop. Terminal patinets can use thier own minds. I know you think your being knid but its not to this friend.................. . Sweet nuttuing

RE: How to help a friend?

by Miles22 on Wed Mar 06, 2019 04:18 PM

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I will say your empathy and willingness to help a person you care for is the kindness that has truly inspired me as I am in a situation of stage IV gliosarcoma and over 2 years ago was told that I let it progress far too long and would hopefully after resection only get another 2 to 3 months of life. I will say I have no medical knowledge so I didn't know the steps to take to start down the best path to extend my life past my prognosis but many friends and family members wanting to help gave me alot of advise on what they had learned about winning the battle.

I was able to follow many of those suggestions that made sense to me on how they would have a positive effect on extending my time with those I love and simply the beauty of life. I truly can't thank all that take the time trying to help me enough. Even more powerful than the information given was seeing how many people cared for me.

Belief, hope and love are so powerful in beating adversities and in living a life full of happiness. The friends I have that care like you are so important to me and keep my focus on doing all I can to keep making the best steps to be here with them.

My wife and children have given every day happiness and meaning. I keep shorter time related goals in front of me all the time to look forward to and a couple of my best friends set up bigger activities than I could ever imagine, in August my buddy that I knew since kindergarten setup a trip to Ireland in August to golf some of the best courses. Circled on my calendar as I continue to do all to stay healthy and least give him a challenge (not great golfer, LOL) on those courses.

Trust me, nobody cannot see how much you care for her and all you are doing is trying to help her find the best path to beat cancer. Stay positive.

RE: How to help a friend?

by Miles22 on Wed Mar 06, 2019 04:29 PM

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Another thing I completely understand about your friend is the unwillingness to read much about glioblastoma/ gliosarcoma. Not knowing what I had I started going online and reading about it. The expectations are so bleak that I stopped reading about it myself.

I came on this sight to find paths of those that were beating the odds. See if others were doing things I didn't know about that they believe have a very positive effect.

RE: How to help a friend?

by PunkyD on Thu Mar 07, 2019 06:26 AM

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On Feb 22, 2019 6:29 PM BrendaP wrote:

My closet friend was hospitalized April 28, 2018. following a major seizure. The original MRI was inconclusive regarding the cause. She was put on anti-seizure meds and had various follow-up appointments with different specialists. On July 5th she had surgery to remove a small tumor. After surgery was over, the surgeon told her husband that he removed it all and that he believed it to be malignant but she would probably just need to take a chemo pill every day for a while. My friend refused to tell anyone the pathology results when she got them. I told her that would leave us to assuming the worse, but we are here to support whatever decisions she makes. She did tell us about her treatment plan and mentioned that the tumor had tentacles. During my research on brain cancers with tentacles, and based on her treatment plan (Temodar and radiation), I figured it was most likely anaplastic astrocytoma. Then at the end of August, she told me her radiologist said she has the same cancer that John McCain had (he had just died). I exclaimed, "You have a glioblastoma?!" She said she wasn't certain. 

The higher-dose Temodar regimen that followed the original lower dose and radiation was started in November but only continued for two months before they told her they wanted to do CyberKnife instead. An MRI mid-January showed the presense of the tumor which they were told is about half the original tumor size and tendrils are present. She finished her 5th CK treatment Tuesday morning 2/19. While grocery shopping with her husband that afternoon, she had a seizure and her husband drove her to the ER. The seizure was caused by edema. They were told it was not a result of the CK and more likely from the original radiation she finished nearly six months ago. Does this make sense? I have read that the side effects of radiation can worsen over time, but the side effects I read about were cognitive issues.

I realize everyone deals with this devastating illness differently. My friend has stated outright that she does not want to look up any information on the Internet about any of it. (I bit my tongue.) I know that her husband did some research on her doctors (surgeon, epilepsy neurologist, oncologist), and they both seem satisfied with being at their mercy to tell them all information about the cancer, treatment, side effects, etc. They become defensive when asked things like, "Do you plan to seek a second option?" When I commented that a symptom she has is a side effect of radiation, I got a disagreeing response, "The doctor did tell us that." It is so frustrating to watch while my friend avoids learning about her illness and treatment options that could possibly prolong her life. My husband and others tell me to leave them alone and let them deal with it in their own way, but I can't stand by and do nothing. I want so much for her to get information from other sources that I ordered Ben William's book to give her this weekend. Is it wrong of me to do so? 

Dear Brenda,

I can totally relate to how you want to help your friend.  Though, over the years, I've realized that people are so incredibly different from one another..........you have to let them do as they wish. When there is an illness, I always feel the need to do so much research. Not everyone is that way. Some people need to share about their illness, others don't. So, what can I say............continue to bite your tongue. If you want to be a good friend, just be there for her. Don't give her advice. A person can only get help if they want the help. 

You are a good person and a good friend. Just tell her, if you need anything, I'm here for you. 

Punky

RE: How to help a friend?

by BrendaP on Thu Mar 07, 2019 07:44 PM

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On Mar 06, 2019 4:29 PM Miles22 wrote:

Another thing I completely understand about your friend is the unwillingness to read much about glioblastoma/ gliosarcoma. Not knowing what I had I started going online and reading about it. The expectations are so bleak that I stopped reading about it myself.

I came on this sight to find paths of those that were beating the odds. See if others were doing things I didn't know about that they believe have a very positive effect.

Thank you for your replies, Miles. Did you read Ben Williams's book? I bought it for my friend and decided to read it first myself. I bought a second copy, but I'm still on the fence about whether or not to give it to her. She has always been an avid book reader. I can understand how researching this disease on the Internet can be depressing and discouraging.  I thought the book might bolster hope for beating the odds and maybe encourage her to seek paths of those that have done so, like you have. 

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