I joined this forum in 2010 but didn't really participate until my recurrence in 2016.
There has been some great stuff happening here in the last couple of years--support and humour, the sharing of resources, hint, tips and experiences. There have been occasions where forum members have joined forces to advocate against changes they disagreed with. BCNA initiated some consultation to discuss the way the forum works and the function of the moderators.
I've had a couple of robust discussions with the mods via personal messages, which I think is the respectful way to conduct those dialogs. Each to their own, I suppose. I wouldn't have their job for quids, walking the line between fair and reasonable and trying to shepherd a couple of hundred distressed souls through harrowing experiences is not an enviable task.
I'm seeing some anger and frustration with the forum lately which I think could be better directed. But where?
I'm at the stage where I am interested in resuming some of my advocacy activities. Advocacy was something that I found very satisfying in the past, but I think I needed to be a couple of years out of diagnosis, again, to be able to engage without adding another burden to an already stressful situation.
BCNA does have opportunities for members to participate in their advocacy objectives, but there are many other ways to use your personal story to change the system. I can see people here with great skills and experience but along with that can come anger and frustration: biting your fellow travelers, though tempting on occasions, is probably wasting energy. I'm fairly pissed off about a number of things related to BC V2, but how do I channel that?
Charity, as they say, begins at home. I'll be avoiding getting involved with any scraps and squabble I see here, but what I have been doing is asking my breast care nurses what they think is the most likely point of leverage to improve services. They are telling me the lack of funding for local lymphedema services is something that is could be changed by some consumer pressure. I've now got the contact details for the hospital Board and some inside running on how to contact the relevant ministers and what part state and federal funding and local allocation of resources plays in this dilemma
Ladies, and gents, if you have some energy that needs to be expended maybe that's a better reason to don the battle undies.