Saturday, April 11, 2015

Cussin' 'n Fussin'

Hey, I just wanted to drop a quick line here about this.  Ella's post on Candice-Marie reminded me that I wanted to address blog manners at some point.  Ella kindly "bleeped out" the frequent profanity which pops up in that interview, and I am glad she did.  I know that the word "bullshit" will naturally make its appearance here, and I am guilty of using that word here on more than one occasion, so I understand if that particular word gets used from time to time.  I have never felt the need to moderate the comments or stop people from posting anonymously, because so far everyone has been incredibly civilized.  I wish to keep it that way for two reasons, one of which I consider to be critically important in what I want to achieve here.  The first reason is that I think that too much profanity cheapens the dialog and makes the point a person is saying much less credible.  However, the main reason I do not want too much of that is because I always want people to feel like they can show this blog to their grandmother or mother.  Despite all the youthful "wellness" warriors out there right now, cancer is primarily a disease of older people, and those people can get sucked into quackery too.  So for that reason, I think it would be great if we could keep this blog as it is now in terms of language.  This is mainly a message for any new people who come here, because everyone who is here right now has been really great in keeping it clean.  Thanks everyone!

21 comments:

  1. OT but...has this article been referenced?
    In it she states "In 2012 I was also diagnosed with a liver tumour, but I didn't understand how my young body could be so riddled with cancers..."
    She also says she had cancer in her lymph nodes, which I don't think I've read elsewhere. If the cancer was in the lymphatic system, her doctor would def have recommended chemo, so is this the spread she's talking about?

    Very confused...

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    1. Sorry, link...http://eluxemagazine.com/magazine/killer-fillers-one-models-story/

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    2. At one point I did put up that link here but I am not sure as of where. I think she talked about cancer of her lymph nodes in some other articles, yes. So in that article she blames her breast implants. I wonder if she still feels that way.

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    3. Hi Ann,

      She has mentioned lymph nodes (in neck/chest), but they are quite a typical area of spread for thyroid cancer and don't necessarily require chemo - a combination of surgery and radioactive iodine can fix them. Her decreasing TGB marker shows that she responds to radioactive treatment and chemo would only be used if she wasn't. I don't believe she was ever offered chemo, because at the last mentioned meeting with a nuclear medicine specialist she was still offered 1 course of radioactive treatment to "mop up" remaining 0.7 ng/ml of TGB. I don't think doctors would offer that if it was clear it does not work.

      It's confusing and there will be a post with timeline and treatments, but there is more from Elle coming before that, I think. Papillary thyroid cancer is a bit unusual in the perception of public maybe, because for it chemo usually is not the first choice of adjuvant treatment.

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    4. I have posted on a prior discussion stream, but i think its releveant...

      We have to take care that our criticisms of her story are absolutely true. Cancer is a very broad mix of diseases, and thyroid cancer is a broad mix. Within the papillary thryoid cancer group the majority are managed with surgery and RAI as Auma has said. There is only a small group that chemo are considered but that is a subspecialist decision as the data is somewhat limited.

      Ann, I don't mean to be harsh (I'm all for enthusiastic probing of when things don't make sense :D), but absolute statements like "her doctor would def have recommended chemo" potentially weakens the overall antithesis we are putting forward. I also dont mean to single you out as some of the criticisms on the FB are in the same territory.

      A couple of other points (again some regurgitated from a prior post of mine)
      - I have a hypothesis that the downward trend in her TG levels may be completely explainable with the thyroidectomy + neck lymph node dissection, adjuvant RAI (which was still having its effect during the dropping TG levels) with the added thyroid suppressive therapy (be it thyroxine or dessicated porcine thyroid, etc.)
      - only thing is I dont know where the scan with the lung disease fits into it (and if a PET was indicated and her iodine scan was negative chemo may have been considered).
      - i think she was offered chemo. she has been quite definite in that at times and as a separate modality to RAI (she is very anti-chemo given the bad outcomes for her friends... google some stuff about the motivations for a charity sky dive years ago)
      - again speculation not very helpful... but it means that when she reveals her information it may be kinda internally consistent with what she has said. If this is the case it will only further galvanise the efforts of her and her supporters even though it is just the natural history of the disease treated with conventional methods.

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    5. Great point Jared. I think it would be in the interest of people with cancer if we take care not to make any definitive statements about small details regarding her treatment. The main thing I want to deal with is the claim that she got only five years to live (i.e. terminal cancer) and that she cured it naturally. That is really all I care about though I cannot speak for everyone else of course.

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    6. Yes, the main point is to clearly disprove the impossible claims of stage IV, 5 years to live/fatal/very slim survival chances (however she has worded it) and the claim that she cured herself instead of being cured by conventional medicine.

      As to the minor details, when they are placed in some sort of a timeline, it makes it easier to understand why those major claims cannot be true, but it is important not to get so lost in detail that the major claims are hidden in between them.

      As to chemo, I find it believable that doctors may have said at some point that depending on RAI results chemo could be used, but I don't think she arrived at that point. I may be wrong, of course, we'll just have to wait for the documents if she really plans to publish them.

      I suppose I am particularly irritated at the misrepresentation of her experience, because that story will spread in my own thyroid cancer community and people may turn away from the treatments that work so, so very well. For many papillary thyroid cancer patients conventional medicine will practically be a silver bullet and it is sad to see it so under-appreciated.


      P.S. Interesting, isn't it, that she claims to have consulted with a lawyer now? Makes you wonder - why all the hiding?

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    7. These are good points.

      Speaking for myself, I find it helps to remember where the burden of proof lies. As people who are challenging CMF's story, we don't have to prove anything, so we don't need to make blanket statements such as "a doctor would definitely have done X". That's not to say we can't make such pronouncements if they fall well within our area of expertise - just that we don't need to. The burden of proof is not with us. It's with CMF.

      I'm a skeptic and an opponent of pseudoscience from way back, so I naturally fall into language such as:
      "I find it hard to believe that..."
      "I don't believe that..."
      "The claim of X is implausible..."
      "You haven't provided any evidence for..."
      "To convince me of X, you would need to provide..."
      "I have evidence here that contradicts your claim that..."

      I don't believe CMF's "five years to live" story, delivered by one (or is it two?) non-oncologist friends-of-friends. It's implausible. I think CMF's Dr Pilbara is about as real as Gibson's Dr Phil, the oncologist with no surname who makes house calls. But I've stopped short of calling either claim a lie (or at least, I think I have; I hope I didn't call it a lie during a heated argument). I could theoretically be convinced by the claim. Just produce Dr Pilbara or Dr Phil, and get them to verify it.

      Placing the onus of proof firmly with the person making the claim means you have a graceful retreat if by some miracle the claim turns out to be true. All you did was ask for evidence, and they've now provided it. You may feel embarrassed that you didn't believe them, but it's a lot less embarrassing than making a blanket claim of your own which turns out to be false.

      And in any case, I don't think a naturally skeptical position should be something that anyone should be embarrassed about. Skepticism is not cynicism, and it should be our default position when presented with any unusual claim.

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    8. I have always been open to being proven wrong, but I still want the proof. We have nothing to prove whatsoever; we are not making any miraculous claims. There are some details in her story which stand out as likely false to people here who have had cancer, and I certainly can see their side, but a lot of those details are not particularly important to me. The biggest thing I want proof of is that Candice cured terminal cancer using the NORI protocol. That is the big picture and that is the thing that will be seductive to someone with cancer. We need proof of that right there and really nothing else.

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    9. That's exactly it. If CMF wants to be believed, she must provide the proof. It's non-negotiable. If she can't, or won't, then there is no more reason for believing her claims than for believing in Santa Claus or the Tooth Fairy or unicorns.

      I remain astounded that her supporters can't see that. The easiest way for them to shut us all up would be to provide the proof. It's all we ever asked for. Instead, we get accusations of sock puppets and government agents and Big Pharma and negativity.

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    10. And now, because her lawyer told her to, she is not releasing her medical records but rather a report, and there is no point in that of course. We know what the report will look like. Oh well, we tried.

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    11. I am simply trying to understand her story. You notice I am asking this question here, rather than on her Facebook page.

      And it should also be noted that she wrote that article herself. And is claiming that it was changed after submission.

      You'll have to pardon me if I don't believe her basic cancer story either at this point. I've had quite a lot of experience with cancer hoaxers, unfortunately, and she's ringing a great many bells for me.

      You guys can maintain the high ground however. It's good that some of us do!

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    12. Ann, what you are doing is great. Don't stop what you're doing. Do what you think is right. I never want us to be a solid group who only thinks or reacts one way. I am not a leader and none of you are followers. I hope that this blog can help facilitate discussion, but it is really important to me that everyone keeps their own values and their own opinions. My only hope is that everyone at least considers another person's point of view, which I ALWAYS see here. I have my own thing, and everyone else has theirs. I really love the exchange of ideas here, but I love even more that everyone is their own person. That is one of the reasons I like having guest blog posts (not just because I often have to work extra).

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    13. No problem, Violet! If I come across as at all testy, it's because being on Candice's FB page is driving me a little insane. Luckily, I'm off on a trip for the next few days and will get a break from it. I just hope all of this has some effect.

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    14. If just ONE person with cancer who was being influenced by Candice comes here and then changes their mind and gets real medical care, then it had an effect and I am happy to keep it up.

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  2. A laudable ambition, Violet, especially for the second reason you mentioned: not wanting to drive away people who may be most in need of your blog. You may encounter some practical difficulties, though.

    The first difficulty is that we're never all going to agree on what constitutes profanity. Some people, for example, consider "bullshit" to be swearing; others find it so unremarkable they don't even notice it. I once had a friend who couldn't even bring herself to say "damn". Her swearword of choice was "darn".

    Me, I'm pretty unshockable. Linguistics was my major, and you really shouldn't be studying linguistics if certain language is going to shock you. Someone once suggested to me that the reason I chose it was so I could write essays on the subject of taboo language and sprinkle them liberally with four-letter words. It was only a slight exaggeration. :-) I once accidentally dropped the F word in front of my grandmother. Bless her, she pretended not to notice.

    If we can't agree, then the best you may be able to do is to say: "It's my blog, and I'm the final arbiter of what gets displayed here. If in my opinion you're swearing too much, I reserve the right to remove your comments. No correspondence will be ended into, etc. etc."

    The second difficulty is that, ironically, too much visual bleeping actually makes the end result look even more profane than the original.

    I'm an active participant on a cemetery headstone transcription site. I once made a comment on their forum which began "I don't give a damn about...". The automated profanity-removing software instantly turned it into "I don't give a **** about", which to me looked much, much worse! I wanted to make a followup comment protesting my innocence, but I knew it would turn out "Hey, I didn't say **** or ****, I just said ****!" so there was no point.

    On that same site, we were talking about certain euphemisms for death which you often see on headstones: "fell asleep", "passed into eternal life", and so on. I mentioned "gone to God", which Robot Moderator turned into "gone to ****". I found that very amusing.

    Anyway. I have no problems with your rules, Violet, except to say that I would like to keep using "arse-coffee". (The word, not the practice.)

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    1. They are not rules really, just more general guidelines so that we take care to not put someone off who may benefit from the information here. I agree that what constitutes profanity is ambiguous, but let me put it this way, when the Belle Gibson scandal first broke, someone over at GOMI suggested we "f**k her sideways with a rusty chainsaw". That is more what I mean about keeping things a little clean around here.

      Look, I do not think that there are a large amount of "little old ladies" out there this day and age who are completely shocked by the words "bullshit" or "damn". I have just see many blogs with good information but that are chock-full of the word "fuck", both in the posts and comments. I suppose what I could see happening in that situation is that a young man might see some good information in there that might benefit his mother-in-law, but is he really going to email the link to her in that situation? Probably not.

      That was my general idea. I do not feel any need to make a hard and fast rule.

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    2. Now I AM shocked by that rusty chainsaw remark. Not by the profanity, which I'd barely even notice, but by the violent intent behind it. Even if it's exaggerated for dramatic effect, it has no place in this debate.

      I want Gibson to face justice (and am dismayed at reports that she may never face criminal charges for keeping money that people donated believing it would be going to charity). I want Fox to be honest. But I don't wish physical harm on either of them, and I think anyone who suggests it would deserve to be banned from a blog for that reason alone. The profanity is irrelevant.

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  3. And this, Candice, is how you keep things classy.

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  4. Thanks for this, Violet. It perfectly explains why I bleeped the swearing. I don't want to alienate any readers, and I think this blog is the perfect antidote to the insult of Candice's Facebook page.

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