I have received some emails in the last few days from people either dealing with invasive or non invasive blc about their concerns with the recent posting on our forum. I know if one person is moved to email me there may be dozens that feel the same way or share the same concerns. I firmly believe we must face our elephant in the room as a community whatever color it is. These concerns fell into three categories and I would like us to open up a dialog and talk about them.
One person dealing with invasive blc was scared by the recent rash of posts in the metastatic section of the forum that their hope for a good outcome was very shaken by so many seeing progression.
You have to take a step back and look at our community. Most of people that come here and post are either in treatment, dealing with the ramifications of them, newly diagnosed, or facing a reoccurrence of some sort. Once they have moved past the crisis most go forward and back to normal life and no longer need the day to day support this site offers they do not post as often. Because of this the site does not truly reflect the reality of blc, if treated correctly and monitored the vast majority will do well in the long term. It also points out why we as a community need to stick around once we are past our own crisis to support the ones that come after us. Hearing from others that have walked the same path and are doing well is worth more than all the statistics in the world.
Another email was from someone dealing with non invasive blc. They felt that if they posted about their concerns and fears that they would be wrong when so many others were dealing with so much worse.
BLC has many paths and each of us have our own story. Yes most of us can not even imagine how we would handle what some are dealing with here but that does not diminish that for us all blc takes a toll. No matter what your stage or grade you still have worries and concerns that are real. You still need to talk of your fears and have a need for good information and need the validation of others walking your path. When you post about your treatment side effects, your concerns or ask questions you become a blc advocate. Most of the people that come here are dealing with non invasive blc and if they don’t see themselves reflected here they do not get the support they need. Hearing the C word in any context is terrifying, treatment dictions confusing at times, treatments are uncomfortable and have side effects and living between rechecks wears on us all. We are a community dealing with different situations but someone else’s more advanced diagnosis does not diminish the challenges anyone faces with a diagnosis of blc.
I also received an email from someone that hesitant to post because they did not know if posting was always appropriate.
If it is a subject you have dealt with it is always appropriate to share your knowledge. But if you are a woman dealing with non invasive for example posting in the men’s issues to a post about erectile dysfunction that you hope they do well and things start looking up……. it may not be the thing to do. Or if you have never had the need for systemic chemotherapy but post that your grandmother did for breast cancer ten years ago and you would rather die than have it personally…..it may not be the thing to do. If you wish to send someone your good wishes, that is always welcome and can be done by clicking on their avatar next to their post and going to their profile and sending them a private on site email or by posting directly to the post if it seems appropriate. It is always appropriate to give someone encouragment when they need it. There is only one category that is reserved for a specific group to post to and that is the metastatic survivor’s discussion group.
We are a community that share a common concern but are dealing with a very diverse disease. Our challenge here is to give validation and support to all that come here no matter what their situation with blc.
Your thoughts?
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