Featured Posts from Yesterday
Hi Everyone. I am new to posting although have been a reader for some months. I have found this forum to be helpful, interesting and sometimes downright scary and on a few (very few occasions) frustrated at trivial messages.
I am living with secondary breast cancer (diagnosed in Jan this year in my spine from c1 to l1, pelvis and ribs), I had been cancer free for three years and was a body builder, fitness freak, rehabilitation personal trainer/registered nurse and was starting a journey towards a world record for power lifting. I have a nursing degree and a psychology degree which I finished lying in bed doing an exam propped up with pillows the day after chemo/radio and 10days after a hip replacement just 8 weeks ago.
Living with breast cancer whether it is primary or secondary is scary, devastating, cruel, painful, frustrating and any other negative word we have in our beautiful English dictionary. Every morning I wake up and want to cry with fear, disappointment and dread and most of the time still disbelief. I suffer moments of deep depression and want it all to just end. I fear the future with treatments and different chemo's, I cry for my husband of 34 years, my 27year old daughter and 2 year old grandson. I am crippled and have only just started to walk again with a stick for short distances (October last year I walk 10000 steps just during my working day), I depend on my husband to cook, clean, make the bed and up until just recently shower me. Life is very different and not a happy place! I try my hardest to look positively to the future but some days it is shadowed with unbelievable grief. I am responding well to treatment and a bone scan next week will my Oncologist suggest some very good results.
I was before BC a CEO of a Queensland based not for profit organisation which was for people suffering from an incurable and sometimes fatal condition. We had a FaceBook forum and a small website forum which was moderated. I now refer back to yesterdays post on "Featured Posts". I made a comment which upset the moderators and got a very stern comment made back to me which upset me but on reflection I did understand, however overnight I have had several emails from people who were upset that the post has a. been taken down and b. that comments were made in an insensitive fashion towards myself and another lady who posted. In my time as CEO I never told the clients of our foundation how fantastic my life was, where I went on holiday or how great my weekend was unless I was asked because I understood that their lives were nowhere near as happy as mine was. The forums where for their use and for them to discuss how difficult their lives were.
I applaud BCNA staff having good relationships with members and think this is to be supported however the forum I thought was for people living with or family members affected with BC.. working with clients is not being affected by the condition, I know full well that at 5pm you can turn it all off if you want to - we living with BC and with secondaries CANNOT turn it off EVER. I would ask that maybe a separate forum be set up for BCNA staff to contribute to with their personal news and other BCNA news and allow the forum that exists to be for us that are affected directly with this retched and disgusting disease. We need to feel bad, sad, and depressed if we wish, some of us may not make it to our next birthday, or ever travel again or even leave our beds and I think this needs to be taken into consideration when BCNA staff are posting on our support forum.
I do not wish to start anything negative, I just think yesterdays suggestion about "featured articles", pink bun ads and other posts was relevant and am personally disappointed that it has been swept under the carpet and members were reprimanded the way they were.
Comments
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Hi Lizzie13. Thank you for taking the time to share your story and your feedback.
As I said in the Featured Posts thread over the last couple of days, we appreciate all constructive criticism.
The thread wasn't removed because it was critical. It was removed because it was derailed by false assumptions, misinformation, and inappropriate comments about the online network and BCNA staff. And it continued after a warning, which is rare around here as we take a pretty light approach to moderation. In short, it fell well outside the network posting guidelines.
We understand the severity of breast cancer. It isn't anyone's intention here to trivialise it. BCNA exists solely to ensure that Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs. BCNA founded this online network in 2010 with that vision.
I hear you saying that you don't like some of the content that we post. As I said previously, we're happy to work on that. However, this is a big community with over 14k registered members, and we understand that we won't get it right with every single one.
I hope you'll stick around, Lizzie13, because it's obvious that you are a caring person with a lot to give. If you'd like to talk more about this, please feel free to send a private message or give us a call.0 -
I too do not wish to add anything negative to this post but wonder whether this is not a simple fix. At the top of the page there is box with drop down choices of ALL, BCNA and COMMUNITY. It would appear to me that members should be able to choose to see all posts - BCNA staff ones and member ones, just BCNA posts or just member posts.
At the moment the All and Community choices seem to result in the same view - BCNA and member posts. Choosing BCNA eliminates the member posts. Could it not be changed so that Community was just posts from members, i.e. those of us affected by BC directly?
I think this might be what some members would prefer?
I do appreciate that staff are and should be members of the forum too but I can see the point that some people are making here.
I do appreciate that the staff are doing their best to listen to our suggestions and I think a lot can be achieved if we remain respectful of each other's situations. Let's try to work together to achieve the best situation for all.
I am very thankful that this forum is here at all. It was my lifeline when I was diagnosed 3 years ago.
Deanne
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Thank you, Deanne. That's right, you can select from three different views in the drop-down menu.
If you click on Community, you'll see far less from BCNA. It's not perfect and this is actually something we're working on.
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Lizzie, wow that's a powerful statement and your post yesterday was as well. I think your ideas and point of view are extremely valid here, you have so much experience and skill to contribute. I'm quite blown away at your background, I've worked in community service but never at the level you have. I supported many people with cancer and other illnesses and I know sometimes I just needed to sit back and listen to what they had to say, when you're supporting someone with a serious illness sometimes the best thing you can do is actively listen to their difficulties and not judge. Often you're the only outlet they really have as they're struggling to protect their family and friends from the worst of the nightmare they're dealing with internally.
I know there are a lot of women here who are in the same boat you're in and they will understand where you're coming from even better than I do.
I was also sorry to see the thread yesterday taken down but I do hope it opens a conversation that could be helpful. I'm new here but this seems like an awesome community. Awesome communities STAY awesome by having open discussions, feedback and support. Reprimanding honest opinions will make it hard for people to discuss the hard issues, and that would be sad.
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Hi everyone
Thank you Lizzie13 for your eloquent explanation of your post last night. I am glad you didn't let the incredibly dismissive response put you off. I can only second and reiterate what others have said. I am moving on from this site after the response by bcna to admonish us like we are school children and then to remove posts in such a high handed way. Is this expression of my disgust also outside of the guidelines?
I am disappointed as I found it very helpful here 18 months ago when I was first diagnosed. A lot of women have left and not returned.
I wish you all the best.
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Lizzie, what a wonderful woman you are.
You epitomise the whole spirit of the forum.
Your background is awesome, and so is your courage dealing with today's struggles.
I just wanted to tell you that. Big hugs. xxx Michelle
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Thank you ladies for your support, I just hope that BCNA admin take our concerns seriously, this was not the only blog about the situation and it would be great if our messages are being considered.
I certainly am not looking to bag anyone from BCNA admin just want them to understand how a number of us feel about OUR forum.
cheers all
Liz
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Dear Christine,
Your generosity sending out breast forms at your own expense is not forgotten, and still much appreciated. I was one of your many grateful recipients, and want to publicly acknowledge your efforts.
I don't know what happened yesterday to your posts, but I do know that losing you is a tragedy for us all. Thank you so much. Big hugs.
xxx Michelle
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hi All
I have noticed a big change since coming back to BCNA forum in the last week , I had a very had time emotionally after treatment dx 2012 treatment until sept 2013. this caused me to walk away from the Forum BCNA back then.
I would like to share a closed facebook group I began it is called Breast Cancer and Beyond.
As our group name Breast cancer and beyond implies. Admin wishes to reinforce our common goals are to support, encourage and share our experiences. Which will help others. We do not restrict conversation topics, but encourage everyone to share where they are at. If a post is not to your liking or doesn't appeal just scroll past it. Admin will not tolerate any personal attacks or bullying towards any member or the group.. Just remember we don't know what in happening in each person's personal life, be mindful that they might need respect and support on any given day. A post which seems inconsequential to you may be a call for support, or coping mechanisms by someone else as they come to terms with what is/has happened recently in their own life.
https://www.facebook.com/groups/bcnoffaaduaustralia/
Please dont leave and have no where to get support or give support. We will happily welcome you.
Soldier Crab
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Soldier Crab would love to be part of it but the link did not work................can you repost or message and I will do a search through facebook.
regards
Liz
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Search breast cancer and beyond in facebook I will get a better link
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Thanks Soldier Crab. I have just applied to join too. x Michelle
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