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HELP!! Local cancer group offerring very biased support!!!


Jana_W

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Hi all

I hope you can help me with this. I live in Perth, WA and have recently joined our local cancer association message board. I have to say that in comparison to this one it is abysmal :shock::shock: . What I am finding quite distressing is that they will not support anything alternative. They are quite patronising in their condemning of alternative treatments, and only support a medical model, whilst acknowledging that complementary therapies can assist with quality of life. I desperately need to find some clinical evidence of the use of alternative therapies (for their purposes this includes ANYTHING apart from radio, chemo and surgery). They wouldn't even let me post the name of Ian Gawler (who is a 27year survivor of terminal osteogenic sarcoma) on the message board (what happened to freedom of speech??). This is so terrible for the users of the message board, especially as many are asking for information on alternative treatments and are simply not getting it. :evil::evil::evil: It is moderated by a helpline nurse, and she simply replies stating that it is an individual choice, but these alternative treatments have not been shown to have any benefit and may in fact be harmful.

Please, please I hope you can help me. It is sooooooo wrong that these people are being fed this information. I am doing my own research for relevant references but any help that could be offerred to me by anyone here would be great. I know you are all busy with you own selves, work, families and concerns and this is alot to ask and I do very much appreciate any help whatsoever.

Thank you :D:D:D

Warm wishes to all

Jana

xxxxxxxxxxxx

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Jana,

My first thought is that the hospital is trying to avoid the "Snake Oil" salespeople that latch on when people are desperate for a cure (for anything, not just cancer). Some alternative therapies may be a positive (Reiki, positive imagery, etc.) but SOME that brag effectiveness, etc. often have disclaimers after the testimonials like diet aids advertised on TV - "Results not typical".

It is one thing for people to make an educated choice and another entirely to be led by a sham shaman claiming there's a cure and leading away from ANY medical treatments...

Is there a way for you to post your email address or receive PMs with questions? You could pass along information one person at a time...

Becky

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Hi Becky

Thank you for your reply. The first thing to note is that the local cancer group is not a hospital. It is called the Cancer Council of Western Australia and it is a non-profit, non-government organisation and does not treat patients. It serves as an education and health promotion type body. Do you know what I mean? To me, this makes it even more imperative that they stop being so narrowminded to alternative treatments. Initially I posted a message including the words "caesium, laetrile, vitamin C, Ian Gawler" and they edited it all out. Then after I kicked up a fuss they posted most of it, but leaving out the name Ian Gawler (who is a fantastic and inspirational resource).

I do think they are fearmongering group and that is why they are so scared of posting anything about alternative treatments. Even worse, when my Dad suggested to this fellow whose Mum has Stage IV NSCLC that he access the lchelp website, the helpline nurse posted a reply stating that this was not a secure website and that if you used it your email address would be available globally.

I think that is a great idea, Becky, about posting my email address. I have a feeling they'll not put that up, but let's give it a go. Thank you.

Please, please if anyone has any more advice let me know.

I might place this post in the activism forum as well. Sorry to those of you who are re-reading it!

Jana

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Let me just say that NO ONE'S e-mail address is sold, given out for public access or even COLLECTED in any way!! We are a non profit that due to lack of funding are personnally (privately) run and maintained- so this is probably the most secure public website around! :D

Other than e-mail addresses that are given amongst members privately by their own choice or information you choose to give to the Card Circle volunteers- no one has access to anything of yours.

I wish I had some better advice to give you concerning this "support" group...have you considered running one of your own?

Becky's suggestions are very good and perhaps you could get other members to e-mail you or private message you so that you can share your broader knowledge to them as well.

I hope you find some answers soon and regardless of whether you change the pace at that "support" group, I hope you and your family continue to benefit by visiting us and being members here.

God Bless and wishes for good health~

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Hi Katie

Thank you for your reply and suggestions.

Please know that my family (Karel, KarenL and me) will most definitely be continuing to visit and participate in this website. All three of us have tried to make other people here in Western Australia aware of your website. This poor fellow, Gordon, whose Mum has Stage IV NSCLC was given NO information in answer to his question about alternative treatments, so we thought he should definitely try this website. Unfortunately when my sister placed a post this website was edited from the message. It's infuriating.

This website is amazing and I just wanted others to benefit from it as well.

As for running my own, geeze, how could I do that when I see how good this one is??? I shall just continue to point people in this direction (try to anyway). I do think that a local Western Australian site would be good so that people can talk about local clinicians, centers, available treatments etc though, so shall have to find someone a bit more computer literate than I to do this!

Thanks again

Warmest wishes to all

Jana

xxxxxx :

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HerSon

Thank you for thinking of that.

The website is

www.cancerwa.asn.au/cancerinfo/cancerchat

Thank you for your support in this. I know the people running this are trying to do the right thing and help people, but I just feel that ignoring people's request for information on alternative treatments is close to negligence. They are not horrible people, but I think they are a bit misguided and that the "cancerchat" needs to be broadened in its focus.

Anyway, please have a look at let me know what you think. Of course plenty of you might think it's OK as it is, as this is just my opinion on that matter (and my Dad's and my sister's!!!)

:D:D:D

Love to all

Jana

xxxxxx

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