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Originally Posted by maryh
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Sorry to hear of the disappointing social media. It can make one feel lonelier than ever i find. Think many people have disengaged from on-line interaction in general, are emotionally detached (unless they are posting about their topics) and take a somewhat voyeuristic attitude about it now. Still such a let down though & hard not to take it personal.
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In general, I may well write an article about this in the future. I've had folks that I've told about my diagnosis, simply not respond, as if they didn't hear me. Or, they never respond if I tell them I just had surgery and it went well (this just happened with a very close family member). I don't really know what to do with that...do they not care? Are *they* overwhelmed? It is a mystery, a puzzle to me, that I'd love to solve.
I am certainly, as I walk on this path, learning a lot. If you have breast cancer, you can expect a LOT of support. And that is a great thing but for
Bladder cancer? Nothing. I give my second opinion doctor, whose now my doctor credit for mentioning the one online educational and support site -
Bladder Cancer Advocacy Network and handing me some literature to read to be sure I had some kind of information. The first practice fell down totally in terms of information and support.
Okay, obviously feeling serious today, and this is off the topic of the way of eating for me - calp. I love answering, btw, questions re my diet (I am part of a long running national nurses health study, plus answer research questions on 23andme), choosing "other" and then listing Calp. It is still being followed, it still is sound, and still works!