My apologies if I offended

anyone out there. Just cranky, I guess. I've been on this board for over two years. Every few months as a new group of people log on (I'm so disconcerted that GBM seems to be more prevalent) many of the same discussions resurface--not complaining, it's just the nature of these message boards and can't be helped.i originally came here looking for others like me, patients who could tell me what treatments they're on and what their deficits are. Occasionally, one will surface, but the posts are predominantly caregivers. That doesn't make them any less knowledgeable, for sure. In many cases it could be just the opposite. And I sure don't have anything against caregivers--I'm one myself. I'm primary caregiver (24/7/365) for my 90 yr. old mother who suffers with Alzheimers, so I have great respect for those who sacrifice to take care of the sick. I think I was just looking for the patient's perspective of living mri to mri, moving from treatment to treatment, hopin, hoping, hoping. The crankiness is from some new deficits that popped up last week, perhaps signaling new tumor growth. I just had my third surgery 5 weeks ago. New progression this soon is certainly not a good thing.

So I am sorry if I've offended. I was trained as a journalist so my style of writing is more cryptic than most and often more to-the-point than most. It probably seems harsh to most of you, but that's how I write. My heart, though, is large, perhaps from having been broken so many times. Lost a sister to cancer when she was only 33, lost my beloved grandmother the same day, my Dad a year later and an infant daughter 6 months after that. I'm a 5 yr breast cancer survivor and a 2 yr. GBM survivor.

I wish you all the strength you need to get through this awful journey. Mary. 

I am not offended in anyway by your comments.  Sounds like you have a pretty good grasp of the nature of this disease and your insights are welcomed by others, I'm sure.

I am not offended.  It is difficult to search for the appropriate subject, or know the intentions of someone else's subject on this site.  I just posted a requested on behalf of my husband to chat with other GBM patients.  I will ask him to reach out to you Lorre G, as you may be able to not only learn from him, but help him as well.

-A

I think like you others have come for the same reasons being partient or caregiver.  I am a caregiver for my father and know more about what is going on than he does.  We as caregivers may not live in the shoes of a GBM patient but we always take the rides with them.  Funny this post comes today on the heals of my father always asking "why me" after sitting down and thinking I also can ask "why me".  I choose not but I also have much to lose in the battle...a wonderful father, my young childrens grandfather, and friends of my father..ect. Like you I think good or even great treatment can come from many places. I hope no one would ever be offended from a post especially not seeing the whole picture.  I find this to be my place for knowledge, a venting tool, and also to post updates just to hear someone say this is great.  Just like a patient you never know the situation as a caregiver until you walk the walk.  So in short stay strong and I continue to pray for each and everyone one you!

PS...I have not been offended!!  ;o)

On Nov 06, 2009 1:21 PM mbg53 wrote:

anyone out there. Just cranky, I guess. I've been on this board for over two years. Every few months as a new group of people log on (I'm so disconcerted that GBM seems to be more prevalent) many of the same discussions resurface--not complaining, it's just the nature of these message boards and can't be helped.i originally came here looking for others like me, patients who could tell me what treatments they're on and what their deficits are. Occasionally, one will surface, but the posts are predominantly caregivers. That doesn't make them any less knowledgeable, for sure. In many cases it could be just the opposite. And I sure don't have anything against caregivers--I'm one myself. I'm primary caregiver (24/7/365) for my 90 yr. old mother who suffers with Alzheimers, so I have great respect for those who sacrifice to take care of the sick. I think I was just looking for the patient's perspective of living mri to mri, moving from treatment to treatment, hopin, hoping, hoping. The crankiness is from some new deficits that popped up last week, perhaps signaling new tumor growth. I just had my third surgery 5 weeks ago. New progression this soon is certainly not a good thing.

So I am sorry if I've offended. I was trained as a journalist so my style of writing is more cryptic than most and often more to-the-point than most. It probably seems harsh to most of you, but that's how I write. My heart, though, is large, perhaps from having been broken so many times. Lost a sister to cancer when she was only 33, lost my beloved grandmother the same day, my Dad a year later and an infant daughter 6 months after that. I'm a 5 yr breast cancer survivor and a 2 yr. GBM survivor.

I wish you all the strength you need to get through this awful journey. Mary. 

 

Offended by what, Mary?  You gave your opinion -- which you are more than entitled to do! That is the purpose of these boards.  Because of our experience of Duke and Dr. Friedman, I wanted to give a different perspective. Your thoughts and opinions have great value to us all. You have been through so much -- and cranky, shmanky -- you are wonderful!!!!! No apologies are necessary, ever. 

Your life has, clearly, hit many bumps.  You are a very strong woman. That is obvious in your posts. I am sure it is hard to not see more GBM patients on here and read posts from the caregivers side of it all.  My husband was dx in February (as I have mentioned in other posts). Maybe he will feel comfortable being in touch with you. I will ask.

Please do not second guess your postings on here. I apologize, if my response to your post regarding Duke made you feel uncomfortable.

xo,
H

Your posts don't offend me in the least.  Nor do you seem cranky. And if you were, who else on earth would be entitled to be? You've been through hell. For what it's worth, and this is just my experience as a caregiver, I think it's the nature of this particular disease that there are mostly caregivers on this board.  My husband really isn't able to do research, type, etc.  I've noticed that within this site, for other types of cancers, there are many more patients posting than caregivers.  I'm glad you can! It's also helpful to read the perspective of a GBM survivor.  Best of luck to you.  Stay strong.

Mary, no offense here either. I can't say I know what it feels like to be you but I imagine I might take a similar no-holds-barred approach. Give me the information, let me make my decisions, tell me the truth around every curve, etc. They say cancer makes you honest and boy is it ever true in my house. Andy and I have had some amazing heart-to-hearts. Who's got time for messing around these days? We live in the moment; it's all we've got.

YVT,

Sarah

p.s. Oops, meant to also thank you for your steady posts of concise info. You make a real difference. And thank you for putting up with all the hand-holding. I know you've said you don't need it yourself but I and many do, and we're more in tune with each other here than at the general caregivers' board. Brains are different. :o)

OMH, right on target. My son CANNOT write or read much at this point. I am thrilled everytime I read a post from GBM survivors who do have what it takes to communicate and fend for themselves.

When I took Andy to vote on Tuesday, he could barely fill out the registration form. : ( He answered several questions wrong and was really embarrassed. One of them was NOT his fault though... it was bad wording. "Will you be 18 on or before Election Day?" Andy carefully studies the question and decides the correct answer is NO, since he will be 27. Instead of understanding the intent, he has to think literally. Then he took about 1/2 an hour to do his ballot... 7 questions. But I AM PROUD of him for caring and doing it. One of the questions by the way was for medical marijuana distribution here in Maine. Passed!

Sarah

Mary,

Bring on the CRANKY!  Darlin' if you can't vent here, then we're doing something wrong.  However, I think you realize that you'll encounter nothing but loving acceptance.  Isn't that why we're all here?

Be strong and know you're loved,

janni

On Nov 06, 2009 3:02 PM onemorehour wrote:

Your posts don't offend me in the least.  Nor do you seem cranky. And if you were, who else on earth would be entitled to be? You've been through hell. For what it's worth, and this is just my experience as a caregiver, I think it's the nature of this particular disease that there are mostly caregivers on this board.  My husband really isn't able to do research, type, etc.  I've noticed that within this site, for other types of cancers, there are many more patients posting than caregivers.  I'm glad you can! It's also helpful to read the perspective of a GBM survivor.  Best of luck to you.  Stay strong.

See, Mary, it's all good! You're fabulous and I love this site -- it brings me great comfort and joy.

OMH - my husband is able to go on the computer but typing can be tough for him. His vision has been impaired peripherally in the right eye.  He has a hard time with the L and K keys.  But the  main reason he doesn't go on these sites, I believe, is that he doesn't want to read the hard stories.  Can't blame him for that. 

Have a great weekend.

H

Husband dx GBM IV 2/09