Hi Joanna, I re-read my post and it came across wrong. I was actually responding to Brett, who talked a bit about medical understaffing at larger hospitals and how he had to ask for certain things at one of the bigger and better centers. I was saying how I felt like I got more personalized treatment from just as qualified doctors right here at home. Why I didn't type it exactly this way the first time will remain a mystery.........chalk it up to trying to do to many things at once on this wonderful evening in Va. Beach. I'm with you, I didn't need all that some centers have to offer.
Minnie

Friends, in my discussion, I'm not talking about yoga, tai-chi or acupuncture or other things along the lines of "alternative" care. I'm sure those things have their place for some people, but they are not necessarily for me and I don't believe they belong in a scientific treatment setting. I am talking about treatments and possible cures that are based on hard science, where the "big three" don't necessarily play the primary role.

I also want to say that the standard of care for my treatment was top notch. I believe I had some of the best medical minds in the world working on my treatment. But that not's to say that it could not have been improved and it's not to say that we don't need a paradigm shift in the standards of treatment and care.

No, I am talking in much broader terms from a very personal perspective. As an example, if I were to present with a recurrence, chances are the treatment they would be talking about would be surgical salvage, perhaps more chemo, perhaps more radiation (which is new thinking in terms of re-irradation). The point is there are other things out there that are less invasive and less destructive that could possibly be more effective, but these things are not at the top of clinic trials. Most clinical trials still involve conventional treatment methods, which are based on killing the tumor rather than treating the disease and the person.

Bob, I share your feeling of the sword over my head. Which is why I put my fingers to the keyboard in this case. I'm hoping that my fears are being constructively utilized.

In terms of what to call me post diagnosis and post treatment? You can call me Brett.

-Brett

thanks for the replies, everybody. i hope we can keep this discussion going.

by bringing up the issue of terminology - "people living with cancer" in place of "cancer survivors" - i meant to point out that the name is a direct indication of the way of thinking. the term "survivors" implies notions of calamity and disaster. i wish for people who have one or another type of cancer to "live" not just "survive," regardless of however much time they may have for that. while "survivors" also implies notions of courage and resiliance, neither courage nor resiliance by themselves do much in terms of the material realities of living with or dying because of cancer. in fact, much like the rtv series "survivor," the term places the burden on the individual rather than on the society, so that in very concrete and material ways, people are left to their own resources to survive. there were a series of postings in a recent thread where many people talked about their struggle to pay the medical bills while dealing with illness. this is only one example.

i'm not insisting on the term "people living with cancer," but i think a change of paradigm requires a change of identity. we need to be thinking of ourselves in terms of the quality of our lives. i practice yoga, and have no doubt that yoga as an exercise in relaxation and meditatin can be very helpful to people with almost any illness. however, i don't think yoga practice fundamentally changes anything about the physical effects of dominant treatment methods nor the fact of their failure. by the same token, the intentions and skills of individual oncologists and medical professionals also change very little in the larger picture. the fact remains that if one goes to any major cancer treatment centre, top notch or otherwise, they have very limited ways of dealing with cancer, all variously involving the knife, the radiation machine or different poisons. that these methods are effective in some cases, short- or long-term, also does not change the fact that the current medical system has not yet offered a "cure." i'm convinced that things will stay the same so long as they stay the same. more research money put into this chemo drug or that, or this radiation technology or that, etc., will not necessarily lead into a "cure." meanwhile, my sister has to live against the illness while having been gravely debilitated by the various treatments. i just can't get over the profound irony in that ... so, i'm going to scroll to the top now and read rilke's quote again ...

"It is a question of experiencing everything. At present you need to live the question."

i'm living it, i guess. in a way all of us are. whether we're resigned to things, have found new meanings in them, or rebeling against them, we are living our questions hoping to find answers.

be well.

gita

This is a great thread. I've always wondered why no one seems to be addressing the possible underlying causes of my cancer -- i.e. how did I get it and how can I make sure conditions aren't right for me to get it again.

I've been more than pleased with much of my care, but it does seem like the medical community has one goal -- get the tumor out -- rather than get the tumor out AND rebuild the patient (nuitrition, exercise, change habits, mental rehab, etc.) so that it's in a stronger position for the future...

I'm still kicking around the idea of being called someone who is "living with cancer." A friend of mine told me a few weeks ago that he admired the way "you live with your disease." And that kind of turned me off. I'm not trying to live with it, I'm trying my darndest to get rid of it! Of course, I am trying hard to live with the consequences of treatment (physical and otherwise). Anyway, still pondering all of this...

Eric has expressed how I feel with the words I couldn't find. Thank you,
Minnie

To hell with this "living with cancer" stuff - I want the damn thing DEAD! I didn't go through all of that misery to "live with" it. I want it gone -I don't to live with it any more than I want to live with either of my first 2 wives. As far as the "cancer survivor" thing goes - I use the term loosely for the ill-informed who want to feel warm and fuzzy that one of their own flesh & blood could actually "beat" cancer (and they probably watch too much reality TV and action movies). I am changed person and I'll never be the same as I used to be and maybe that's ok. I can live with being labeled a changed, humbled person, the other labels I can't relate too. Maybe just the "living" part will do...

Agree, Gary, I don't want to be reminded constantly that I'm living with cancer, a cancer survivor, or what have you. But, it's in people's nature I guess to be concerned. Couple of days ago I was chatting with one of the other board participants and mentioned going in to HK on Saturday. Of course they were concerned, wondering if I had a doc's appt, at I appreciate that. But, no, I didn't have a doc's appt, but needed to do some shopping, see the accountant, and get my blueberry pancake fix at a particular restaurant.

But, it reminded me of how automatically we jump to conclusions with this disease. I'd some how like to move on, but the question is how?
Bob

A very ineresting thread indeed.

I can give you some thoughts from a guy who has a reoccurance and was told it was uncurable. I am not the first one with a reoccurance and I won't be the last. I have come to realize I am not special, I am not immune to an early death.
The anger part didn't last very long in my case. It was so much easier accepting reality than wasting time crying over spilt milk!

I have grown more as a man and a human being in the last year than in the first 53. When they slap you in the face with the reality of your situation it wakes you up real quick. To be able to share my fears, be supported and loved is a special thing. This forum provides that. It cannot be measured.
We live with the decisions we make. We try and survive but as we most recentely found out, Some of us don't. I will always remember Heather, Packer66, Russ, Scott, Marcy, Lynn and all the others who fought the fight only to lose in the end. I am happy they suffer no more.

Thanks for letting me ramble on and anyone with a question about my condition can email me anytime.

Yout Friend, Danny Boy

Hi Bob,
The first thing I did was tell everyone who asks to stop asking "how are you doing". I sent emails to all of my support group as well and told them that I wanted to return to as "normal" a life as possible and that meant being treated like a "non cancer" person.

Sometimes it's tough to come here everyday. It's not surprising to me why some have to "vanish" after this experience (although we would like to hear their success story).

I guess I have taken seriously that scriptural mandate of being in service to others. This all started prior to the big c when I was a recovery group facilitator, AA group secretary, primary caregiver and trained lay Christian counselor. I don't always like it but when God calls - you go. It seems God puts these challenges in front of me (as well as He does all of us) and it's what we do them them that will give us hope and purpose.

Danny certainly idealizes that concept with the grace he shows us constantly with his generous service to others in spite of his own predicament.

Hi everyone
OK maybe today is not a good day for me, I have run out of pretend confidence.. I don't want to be the brave face anymore..I want to be able to freely admit that I am scared of the surgery to come and scared of the effect it will have ont the rest of my life.. I know that this is the wrong attitude but I don't care it is how I FEEL, my family all pretend everything is fine and my husband is convinced I will be up and about in side two weeks.. S*** I don't want to be doing this at all, and I freely admit I'm now a fully fledged whimp... So great for everyone who can handle this better than me, lets hope that in a few months time I can look back on this post with a better frame of mind..
OK I've vented...
Sunshine... love and hugs (I need some right now)
Helen