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.
