Partners even more likely than survivors to experience fear and worry over long term, study finds
by Blessed72 on Mon Aug 06, 2012 08:27 AM
My deepest sympathies and support to all the patients and their care-givers here and everywhere. Be strong, count your blessings and be prepared.
I'm @ my one year anniversary since that ER visit that turned into a week @ the hospital, only to be sent home with a bunch of new English words including "Anaplastic Astrocytoma" never heard that one before :-)
That was my first time ever @ a hospital as a patient... it was mostly a boring experience but I was intrigued by the excitement and the anticipation as they did more scans and ran more tests to go all the way from a "nothing" to an "inoperable brain tumor" and eventually an AA3.
My doctor said 30% of patients made the 5yr mark... he was pretty sure I wasn't gonna be one of those 30% :-)
He literally said: Brace yourself. You're headed for trouble.
And thats exactly what I've been doing :-) bracing myself, whatever that means!
I consider my self to be one of the few "lucky" people who actually get a warning before they face death! I always thought it would be a great gift if one could get some sort of a warning or a sign before actually leaving.
After all, people who died suddenly in car accidents, plane crashes or got run over by busses, never got to join a forum like this! Don't mean to be offensive or insensitive, just trying to share some good that is built into our tragedy. That has helped me cope with the news as they kept getting worse and will likely continue until the end.
Everyone will die - No secrets there. You, your care-givers, your doctors, and I, will die! and not necessarily in that order.
The more important question is: Are you ready for death?
Unfortunately, the truth is, not too many people are, or will ever be ready...
I felt it would be a smarter choice to invest whatever time I have left (aprx. 1yr according to my N.O.) in re-examining what I knew and what I needed to know about death.
For those of us who believe in God, the one, the creator, we hope and pray that death will be like finally reaching a destination after a long journey For those who don't, I encourage you to do your homework, now, and to reach a place where you're whole-heartedly at peace with whatever it is that you believe in.
I'm interested in spirituality, especially , given our common experience, and I would love to share our thoughts with those who have answers they're comfortable with, and with those who may have questions yet unanswered...
I live in NYC but might relocate soon since I left work and currently on disability.
by huxley2006 on Mon Aug 06, 2012 01:56 PM
I not sure what sort of response you will receive on this. Everyone handles this experience in their own way and it probably unique to each individual. For me I don't lose sleep on these larger issues. I love my existence and will continue to do so until I am unable to do so.
I'd like to say that this experience has made me more spiritual or religious but at the end of the day I guess I am not all that complicated. My wife says that given the situation I should consider that a blessing.
by siblingof on Mon Aug 06, 2012 08:29 PM
by Blessed72 on Thu Aug 30, 2012 12:41 PM
In fact I am "lovingly" calling on my fellow survivors to "get to know God, before they move on" no offense and no preaching! it's just the best advice I can think of. I would choose knowing my creator over a cure for my brain tumor any day!
When my mother prays for me to get better, I ask her: and then what? I am 39yo and I have a 2yo boy and a 3yo girl and my life could not be more perfect, but I always knew there is an end (or a new beginning) so why all the panic now?
Is any one surprised that we're going to die? cancer or no cancer! seriously!
Please use whatever time you have left wisely. Prepare to stand before God almighty. The one and only, the creator of all things, who does not have sons or daughters, nor was he born, and he is unlike anything anyone can imagine.
Best of luck to all of us! this is the most important moments in our lives.
by huxley2006 on Thu Aug 30, 2012 01:26 PM
Whatever helps people get through this is a good thing and really hope you find strength and solace in your beliefs.
For me trying to spend time getting to know the creator and preparing myself to stand before him seems a bit ambitious. How about I take one day at a time and enjoy the company of friends and family. I am hoping the creator will understand. After all we may have an eternity together.
by modesta on Thu Aug 30, 2012 01:55 PM
Blessed72, all I can say is "I LOVE your attitude". when you get to heaven, and I have no doubt you will, tell my husband "Efrain" I said hello, love him and miss him!
by mollie924 on Thu Aug 30, 2012 05:14 PM
I do agree with your philosophy - I would rather have a warning also. I think a sudden death is more traumatic. Even though it is more difficult for the caregiver and the family to see their loved one slowly become more disabled but it gives everyone a chance to live more fully and find satisfaction in our lives . Since my husband's diagnosis we have been more appreciative of what we do have and the small things that we let affect us in the past are no longer important. We look at life through a whole different lens now.
I disagree with your oncologist telling you how long you have on this earth. There are so many people on this forum who were given a one year prognosis but have out lived it. "Predictions Do Not Determine Outcomes" was said by Rachel Remen, M.D. A clinical professor at UCSF who has worked with cancer patients for 40 years. I think she knows what she is talking about.
by siblingof on Thu Aug 30, 2012 09:43 PM
by Blessed72 on Mon Sep 03, 2012 05:32 AM
Dear Siblingof, Please accept my apologies. No offence or disrespect was intended. I indeed respect everyone in here while obviously holding my own ideas and beliefs.
It seems somewhat unfair that I'm unable to share an advice or idea regardless how important or silly to some, without being accused of hatred and disrespect.
Anyway, I will label any future posts "Religious" or "spiritual" so that if any one is not interested, they can just skip.
Sorry about the typos... My left hand is giving out!
by rarsie on Mon Sep 03, 2012 07:48 AM
Hi, Look I think whatever makes you tick who cares what anyone believes in. My son is 29 and has GBM he just SAID i AM NOT DYING WHO DO THEY THINK THEY ARE TO TELL ME, and if you want to believe in god or whoever feel free but dont try push things on to other people. I believe in "things" but that is my opinion and I dont wish to share it.
We are all battling a terrible thing here as carers and as suffers
Cheers to all
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