Just an observation:
It seems over the past few years the number of users posting regularly in these forums is on the decline.
I really think this bulletin board style forum is superior to most of the other social media type apps for keeping long term threads of useful knowledge more easily searchable or able to be organized.
My brother was just recently diagnosed with small cell lung cancer, extensive stage with bone and liver metastasis and died within three months of diagnosis, and I was lamenting that none of the various resources I could find were as well put together as OCF's forums.
Doing one's "homework" was more challenging I thought.
I ended up joining some facebook user groups for lung cancer, and small cell lung cancer specifically and some reddit groups of the same type.
I've posted a lot of anecdotal, my experience only, type stuff on here for sure, but those other forums have lots of superficial anecdotal experiences and were lacking on substance.
Instead of a static forum post with a static thread, easily found and easily searched, the reddit post or facebook group posts were more a feed type situations where new posts get promoted and get some interaction from those with experience in the group, but then to other users kind of get lost in the noise.
I did join at least on Reddit head and neck group, and I honestly can't recall if I've joined a similar group on Facebook for Oral and/or Head and Neck Cancers.
I do know the Reddit group for oral cancer/ Head and Neck Cancer is very active with new threads and response posts daily or nearly so.
I've been meaning to drop some references to OCF and links to those groups, but am not sure how effective that may be to pointing people to the excellent resources on database of the really good information from the patient perspective gathered here. There simply is unmatched breadth and depth of experiences and here on the OCF forums.
Not sure if the support staff behind the scenes is purely voluntary, or what thoughts the leadership may have regarding kind of proactively informing folks in those other app/media locations of the existence of this very useful resource.
Just kind of tossing it out there for other's thoughts.
R/
CQ
