Michelle,

I also am sorry to hear about your friend, that is very disappointing.
Still, I really believe that you will be amazed at the people that WILL step up to the plate.

Liz

Michele

It's not you, it is definitely them. AMEN to what all the prior posters have said. Your frustration and disappointment is unfortunately all too common an experience for both patients and caregivers if my experience is any guide. I used to joke that if one more person at work had told me "You're so tough and such a fighter, there won't be any problems" I would have lost it and decked them then asked "tough enuf for you?". Luckily I got so sick and weak from TX, I had to work at home. So Yes, I was plenty mad at the time. Too bad I had not discovered this forum back then. I will add you and yours to my prayer list.

Ooh I have a good one!! When my husband was first diagnosed we met with our pastor. After we had finished pouring out our souls and sharing our worries he said. "This is so exciting, arent you excited about cancer? this is going to change your lives forever, I just cant wait to see what happens on the other side of all this."
I tell you if I hadnt been so shocked I would have hauled off and wallopped him right in the kisser.
yes he is still our pastor, and we got him pretty good when Erik finished treatment. He wanted us to do a video testimony of what God had done through cancer, and we made sure to emphasize what he had said. The entire congregation "GROANED" when that part came on the video.
He has since apologized and told us that he wouldnt use that phrase again. "Arent you excited about cancer?"
We lost many friends during Erik's sickness, people just kind of naturally weeded themselves out through it, but I really think the hardest was my father in law. After years of adoring him, (like a dad to me) he just up and dissapeard out of our lives. He lives 6 blocks away and could not come visit, let me run to the store, or just give a call once in a while. The dissapointment in him still bugs Erik and I at times, but to even things up a bit; we have friends who live 400 miles away that came here, alternating once a month for the entire duration of his sickness. These people prayed with us, let us vent and Eriks best friend would come and just sit in the room with Erik, not talking not doing anything..just being.. and giving him company. We realized that blood has very little to do with family!! It has to do with commitment and love!!
Im praying that you will be given "family" that will support you to the fullest.
Jennie

Living proof that not all "pastors" are capabe of actually shepherding the flock. It sounds a like a bit of exploitation to me. And what if there is a bad outcome?!?! Then prayer doesn't work and God has no healing power. Risky business, insensitive and thoughtless. Thank God that many churches have trained lay Christian counselors or professional counseling ministries.

Sidenote: Out of all of the people the prayer chains were praying for in the megachurch that I attend, I am the only survivor...

Yes, you will found out who your true friends are. Some just can't deal with the realities of death or their own sense of mortality. Weirder yet, some radical Christians may even blame it some some sin component in your lives. Then again others you barely knew will all of a sudden be there.

GAry-RE: "out of all the peopl;e on the prayer chain--- you were the only one that survivor" Do you think that was because you were a musician or a carpenter?

I don't think those vocations helped Gary much... but I think most importantly, he made some very smart decisions early in the process.

I think he took control of those things that he could and became an advocate for himself, and not just another name on the list of patients at the hospital. I think he asked questions when things were not going well, and (knowing Gary) he was ahead of the curve on what was coming down the pike, and braced for it or had necessary things ready for it. I also know he had, beside religious faith, a sense of the biology of it all, and accepted the cards that biology had dealt him. He had a science background which lived in harmony with his faith.

I don't think Gary sat back and hoped that a God would pull his sorry butt out of things. I knew these things the first time Gary communicated with me years ago. Besides, I hear he's a lousy carpenter......

As to video testimony's, I hope it included the training that the doctors that treated him had, the experiences that they had built their ideas on, the chemist/biologists who concocted everything from his treatments to his pain medication, the people that designed the amazing radiation device that killed the deadly cells, ( I could go on here, but will cut this short) and I hope it had a balance position of all those highly faithful who have been cut down by the disease and for whom no faith, or reason, could prevent their ultimate pain and demise. For every win there is a loss. There is balance to things, be you a faithful follower or not. I am not fond of those who hold up only the success to be praised, but of those who acknowledge that we all owe nature a death, and for too many it comes far too early in life. People for who no "prayer circle" or other religious wish changed one iota of the direction they were headed in.

I have been to 4 funerals in the last two weeks, and I am way burned out on religious platitudes that fail in their attempts to console, explain, or comfort. Every one of those four, a testament to quality lives, loving parenting, social consciousness, and deserving of more time. Everyone a religious being, prayed for and loved. Now gone.

If it brings you comfort go with it, but the luck of the draw appears to be as strong a reason that some live as any other cause. I am typing something in anger that I know better than to put into words in a public place. It will be a lightning rod on the board. But if I hear one more person say "God will not give you more than you can handle", I think I will throttle them on the spot. Sorry this post of mine is exactly the kind of thing that I abhor on the boards....

Holy Cow Brian- you just kicked the crap out of me!! No I did not take that personally but I have to tell you that Eriks "testimony" did not just consist of postives, and platitudes, and how fantastic God was. It described the pure torture of treatment, how sick he really was and of how amazing the docs were that worked with Erik, how they dropped everything to research more, to come together and work to make Eriks care their priority. How they used every resource available to create a treatment plan that was specific to him. But we also made sure that even as hard as it was (and is again) that we knew that whatever Erik's ultimate fate was and no matter how many prayers were said for him, that we were going to be glorifying to Christ's name. Meaning that we would never blame God for this horrible but life changing event in our lives, but to be faithful to loving others.
I dont sit around and throw the hell fire and damnation around, and I certainly dont go along with the zealots that believe that cancer, sickness and the bad things that happen to us are directly always related to my SIN. CRAP HAPPENS- and it happens to us a lot (we just had a fire in our house, my appendix went kaput, we had a flood in part of our house, my daughter and Erik were in a car wreck, ...I could go on) but it doesnt take away the fact that I believe in the Higher power of God and that ultimately He is good.
Now Im off my soap box, and I want to share how truly and deeply appreciate you Brian, Gary and all the others of the OFC, for without you this journey would have been much tougher.
Brian you are in a very tough position, you hear so many bad situations and are so involved in the end of lives and I think that many of us forget to come back when things get better to share what good has come from this disease.
All my Love
Jennie (please dont kick me off for my strong opinions!!!)

I have never been a fan of organized religion, though I do consider myself quite spiritual, especially over the past 2 decades or so, when I overcame some personal adversity, raised a son and entered my cancer battle.

Regardless of what form a higher power takes, it is incumbent upon me to take the action necessary to maximize my chances of recovery, just as Brian and Gary alluded to. I have no control over the reactions of others, and I have been subjected to everything from loving support to benign neglect to being warned that my cancer was indeed a punishment for my past sins.

I volunteer every Monday at the local CCC where I was treated, specifically on the floors where Head & Neck cancer patients are predominantly treated. I am vigilant in my follow up appointments, and try to eat, drink and do the right things on a daily basis. I should drink more water, less coffee. I should exercise more. However, I make a concerted effort. That is all I (or any of us can do).

I have learned that I cannot control results. I have the power to do my best with what is in front of me at the moment. I also have the power to control the way I react to things that happen around me. That's it. So whether it is a prayer chain, an over-zealous pastor, supporting friends or friends too scared by mortality to deal with the facts, I can't let any of them distract me from taking the actions I need to take. I can make my experience more or less pleasurable, in direct proportion to the degree I let others dictate my peace of mind.

Jennie. I should not have posted that, and I am sorry that I may have hurt you in doing so, that was not my intention. Now that you have replied to it, I can't really take it down, which is what I feel like I should do. I knew the venting would cause a storm, and I did it anyway. Sometimes I am not bright enough to know when to keep my opinions to myself.

I respect the faith of others, no matter which it is, and I was not suggesting anything negative about faithful people. I am spiritual in my own way as well. But you are right, Crap happens to everyone. Not just to the "other" guys, not just to bad guys, everyone. In the end I guess I am not a believer in divine intervention brought about through prayer group requests, of for that matter through any other means, having personally seen too many good people die in senseless wars and in the world of cancer. Let alone the genocides that are going on around the world, starvation of third world children and adults, and the rampant diseases worldwide that are gutting entire populations. Even massive numbers of deaths from something as common as diarrhea reach into the thousands every year. Dare I leave out the horrors that man can inflict on man unbridled by any type of intervention. These hardly seem the actions of a benevolent supreme being. For all the voices raised to change it, the horrors and pain continue, and only direct personal interventions by other humans seem to, at best, ever put a finger in the dike of it all. It has always been this way, and I suspect it will always be. That we can find balance and sanity in scattered moments of bliss and beauty through the detritus of it all is amazing, and the only saving grace.

With everyone's permission, I would like this topic discussion to end. Saying only finally that everyone's belief systems are personal and should be respected by others.... including board administrators.

Brian,
It's all good! Please feel free to remove whatever you need to, because I think if more people get involved in this discussion it will certainly turn into something that none of us want on this site. I enjoy a good discussion on controversial topics once in a while. I think most will agree that even with all the diverse views and backgrounds the primary goal here is to support one another. It goes back to the original thread- in that sometimes blood isnt thicker than water- because we here at OCF become family through our cancer and caregiving experiences.
Jennie