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pinball wizard
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Re: Important - We need your approval or any objections plea

Postby pinball wizard » Mon Jun 07, 2010 10:42 pm

You are welcome JJ. I know that you do what you can and appreciate that....but 'Minnie Mouse' could join and vent her feelings, not realising that membername 'Goofy' is in fact her husband "MickeyMouse" using an alias!!! are you following me??!! (apologies to Walt Disney!)

With all the publicity about Facebook being responsible for breakups of relationships, domestic disputes and even murders - and in light of this week being 'Cyberspace awareness week', I guess we should all be careful about what we write.

However, having to be so cautious on a forum like this to a certain extent defeats the purpose of gaining advice and support at such a traumatic time in our lives.

I know from my 2 years membership who I can trust and relate to (love ya gals x) - there is only so much 'vetting' that administrators can do - without making light of the subject matter, I suppose that we can all say that we have had membership entrance medical examinations (!)
keep cyber-safe,
dee xxx

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Janette
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Re: Important - We need your approval or any objections plea

Postby Janette » Mon Jun 07, 2010 2:46 pm

Thanks Dee,
I do screen all prospective members, which isn't foolproof but it's something. :hugs:
Janette


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pinball wizard
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Re: Important - We need your approval or any objections plea

Postby pinball wizard » Mon Jun 07, 2010 1:05 am

As much as I would do anything to make the journey of illness better for everyone, I too have some reservations - the same that have been voiced.

However, whilst a lot of the threads are open for ANYONE to view, a few of you have mentioned that other threads (members/angels etc.) are for MEMBERS ONLY. I just want to point out that ANYONE can become a member to view those threads.

Yes, this forum is a sanctuary for so many and whilst many of us feel that we can vent, cry or whatever here, the truth is that whatever we write can be used for reports and research - without crediting where the information was gained from. We wouldn't even know about it. And, that happens on any type of internet forum/site (unfortunately).

To that end I would like to THANK BETH for even asking us in the first place. I am sure that others would not have.

dee x

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Re: Important - We need your approval or any objections plea

Postby schoolteacher » Sun Jun 06, 2010 9:42 am

Thanks for clearing that up Janette. Just wondering. I can't remember what I could see when I first found the forum. I was too desperate at the time. :gappygrin:

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Re: Important - We need your approval or any objections plea

Postby Janette » Sat Jun 05, 2010 9:28 pm

Chris, While some areas of the forum are members only, others are publicly viewable as are most online forums. If that wasn't the case we would not show up on google or search engines and wouldn't get many members. We can't help ladies, if they don't know we are here.

I don't believe Beth would go ahead without approval, and MD absolutely.
Janette




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Re: Important - We need your approval or any objections plea

Postby Marydean » Sat Jun 05, 2010 9:12 pm

Chris, I think they will need to provide evidence of consent in order to get the study approved by the ethics committee.
Dancing through life, healing every cell in my body.

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Re: Important - We need your approval or any objections plea

Postby schoolteacher » Sat Jun 05, 2010 7:18 pm

Janette
Just curious, if the student is now a member who can post, how do we know information is not being used already???

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Ms M
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Re: Important - We need your approval or any objections plea

Postby Ms M » Sat Jun 05, 2010 6:12 pm

Thanks janette, was just curious! :D
Good friends are like stars.........You don't always see them, but you know they are always there' 'Remember yesterday, dream about tomorrow, but live for today!'

[size=85]Diagnosed Feb 2010, Stage 1, Grade 2, 11mm, ER postive, no lymph nodes involved, lumpectomy, no family history of breast cancer. Did 3mths of chemo, 6 wks of Rads, have recently started Tamoxifen!

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Janette
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Re: Important - We need your approval or any objections plea

Postby Janette » Sat Jun 05, 2010 6:01 pm

No Marija, not as yet. My observation is that members who have posted have generally been against this and it won't be approved without the member's approval.
Janette




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Ms M
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Re: Important - We need your approval or any objections plea

Postby Ms M » Sat Jun 05, 2010 5:46 pm

Has anything eventuated out of this?
Good friends are like stars.........You don't always see them, but you know they are always there' 'Remember yesterday, dream about tomorrow, but live for today!'

[size=85]Diagnosed Feb 2010, Stage 1, Grade 2, 11mm, ER postive, no lymph nodes involved, lumpectomy, no family history of breast cancer. Did 3mths of chemo, 6 wks of Rads, have recently started Tamoxifen!

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Re: Important - We need your approval or any objections plea

Postby berkinstock » Mon May 31, 2010 11:26 pm

Thanks for your suggestions and Marydean thanks for your question. Yes, this is all about communication and access to information and power relationships. It'a also about how forums, such as this one, give people who may be marginalised by their illness or for some other reason, a voice about their direct concerns. It's about how it informs and educates on treatment options, how it identifies what is bad, doesnt work, is not available (and why not) and the opposite. So it's not about how this forum directly accesses government/politicians - like the work of BCNA - more how such communication means that BCNA can lobby for particular change. I cant say right now how this research will help breast cancer but I hope that this research will help individuals who have been diagnosed with life changing conditions, at the very least by identifying that they are not powerless within the system. I understand that some forums, such as this one, do communicate with honesty about challenging subjects and that postings can be inconsisent and that people come and go from them. I respect that and in no way disrespect privacy.
Beth

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Re: Important - We need your approval or any objections plea

Postby jezza » Mon May 31, 2010 10:42 pm

If it would help the breast cancer cause in any way I would be more interested but as I see it we are just going to help someone with their thesis.

I'm sure you, Berkinstock, have the best intentions. Some of the posts here are very personal....some members who have posted here and been members for years have died. There is no way you could get everyone's permission to quote them....the forum doesn't work that way. Some members only post every few months or years.

Good luck with your thesis. I think you maybe have learnt a little about communication from us. This forum IS about communication....not theories and academic journals.

I really wish you well but think you have missed the point a bit with us.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Important - We need your approval or any objections plea

Postby Marydean » Mon May 31, 2010 8:08 pm

Thanks for coming to post a clarification berkinstock.

I wonder whether this is the sort of thing you're investigating. Person A posts about some advice they have been given...or more often about a question they have *not* had adequately answered in the first blurry days of diagnosis and treatment. Other people hop on and either post more information so that Person A can go back and ask more informed questions...or ask for something they were not previously offered...or access a service that's available to them that they didn't know about (because that 20 min consult just aint long enough). I can think of dozens of instances where this has happened - esp re things like getting infusaports inserted...or actually mr surgeon please make that a power port...or times when members have been encouraged to go back and question what they have been told or seek second opinions or shake up their care providers for some answers - all based on the support and info they have had here. It's not a political thing as such but it is essentially a "democratic process"...I guess if a surgeon or an onc has enough informed, democratically empowered people stepping into their office week after week asking the same questions or requesting the same things, then they may alter their delivery to accommodate the perceived need, eg offering to insert a port during initial breast surgery rather than waiting for vein collapse a month into chemo.

Is this what you're talking about?
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Re: Important - We need your approval or any objections plea

Postby schoolteacher » Mon May 31, 2010 8:07 pm

I totally agree with Jan and Ruth's comments. I believe that only bc sufferers or supporters as in family/friends should be able to access this forum and our posts. We are not here to enact change, make political comment or support research. Please respect and protect our privacy.

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Re: Important - We need your approval or any objections plea

Postby Ruth » Mon May 31, 2010 6:36 pm

Thank you for coming back to us with further explanation Beth. Like Jan I too would prefer that our forum is not used for this research. Can I suggest you contact Breast Cancer Network Australia. They too have a website which is open for members to post their stories on and are involved with enacting political change .... I feel this would be more appropriate in the circumstances.
Ruth :kiwi:


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