Simply reposting a thought from a censored thread

Good evening, all,

I wanted to respond to your suggestion, Athena, that the mods are in any way of the "rah-rah" sort, unwilling to allow us all to face off with the grimmer realities of breast cancer, its treatment, and its long-term effects.

I've been on the boards here for several years, reading extensively but posting almost exclusively about lymphedema. I have not been gentle about its realities, and have sometimes been downright critical of bc.org itself for their lack of accurate and timely information about lymphedema in their information pages and for their promotion of Lily Shockney as a "breast cancer coach" when she's in fact a loose cannon where lymphedema misinformation is concerned (and for that matter, so is Susan Love), among other things. I have never once been censored or admonished by this organization for anything I've said, even when it has led to whole threads full of raging posts about bc.org itself.

These people are not out to squelch honesty and clarity about breast cancer. Just the opposite. And they are caring enough to offer protection where it's needed without slapping hands. Think about it: what else can they offer WOM other than what they did? It isn't them who are attacking and maligning, it's other bc patients. The gentleness and consideration is up to us, and no fault of the mods if they can't make that happen. They did what they could, gently and considerately. The rest is up to us. We need to quit talking about how WOM and others should be supported, and just get on with doing it.

JMHO. Be well!
Binney

Remember too that there are lots of other diseases that are 'prettied up' to raise money:  Jerry Lewis and his Telethons, Autism Awareness and their jigsaw puzzle ribbons (my son), yellow ribbons for people lost for'ever'?!!, Relay for Life with ALL their various fundraisers - pizza parties, bowling nights, sundae bars, wine tastings, garage sales, etc.  Sometimes you have to pretty it up to get the money coming in;  People only want to be so sad.............and that is just human nature.  I think that it's okay to be human. And I am not pro-Komen and would not be for political reasons but......I am a Relay girl.  I'd join Autism fundraisers whenever and wherever I could.  Cheerfulness creates better PR, more positivity and let's face it, generates more funds.  I think that is a good thing.

You go Athena. Enjoy that hunt. And I do totally get the implications.

I don't know what kind of proof you want mardibra. If you are expecting to see the same kind of "proof" as is provided for mainstream treatment, you are not going to find it. Because alternative treatment is usually natural, no one can patent it. If no one can patent it, no one is going to pay the millions it costs to go through FDA testing (and if it is an inexpensive tx the FDA would fudge the data so that it would show no efficacy). The FDA and Big Pharma rub each other's backs. Heck, the people who work there walk out of one door into the other, then back again. So you won't find that kind of data.

What you can find are our personal experiences with alternatives -- and also our experiences with avoiding conventional. Frankly, that is the main reason I am here. Yes, I want to learn what others have to share, but more importantly, I am offering up my life -- or death -- as a testament to the treatment that I have chosen. I was very open with my treatment choices on the thread that the moderators closed. I don't know if you were there or not. Nor do I know if you care, since I am so early in my diagnosis and treatment.

If you are really interested in alternatives, here are a list of books I have read so far:

You Did What? Saying 'No' To Conventional Cancer Treatment  

Herbal Medicine, Healing & Cancer: A Comprehensive Program for Prevention and Treatment  

Cancer: Step Outside the Box  

Athena,

Dont know what thread was locked down.  However, I totally loved reading your "repost."  It was very well written.  I got it.  I am almost 16 months post diagnosis and 8 months post treatment.  No cancer history in my family.  I was the most healthiest and most health conscious person in my family (still am).   Both my brother and sister smoke, I never have.  Yet, I am the one with cancer.  (Please don't misinterpret this as I would NEVER, never wish this on them or anyone else.)  I am just restating ....we dont what causes this group of diseases or what will cure them. And, I was the one with the breasts removed.  I was the one with no hair, burning hands and feet (and all other manner of chemo SEs). I was the one with radiated skin oozing and peeling off.  I am the one with lymphedema.  I am the one still undergoing surgery.  My poor sister bless her heart.  She accidentally walked in on me undressing and she said that she intellectually knew what was going on with me but actually "seeing" it up close and personal put another face on it.  She saw it and she cried.  I get "the three words."  I am thankful for the doctors who did the best that they knew to do.  But I was slashed/cut, poisoned, and burned.  I did a little search on the history and origin of chemotherapy and was quite surprised to learn that the earliest chemo drugs were first developed as agents of warfare.  Go figure....

Cancer is the enemy.   

ali68, I'm sorry for the late reply.  I do hope you have an easy time with surgery and rads.  I'm starting rads today and I too have very fair skin, but not solar urticaria, like you.  I THINK the kind of radiation we get is not like what you get from being in the sun, though.  I may be wrong.  Hopefully rads won't trigger that for you.

I was terrified of surgery and chemo but both went much, much easier than I expected.  I hope it's the same for you; I didn't mean to make light of what you're going through, as it IS scary as hell.