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Jun. 16th, 2016 08:03 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckAt a suggestion from ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
evalerie, I poked around Yahoo Groups to see if there were any useful breast cancer support groups. Sadly, there really wasn't anything that I thought would be comfortable or useful. There was one large group that linked to a site (which the mods said was their base site) that pinged me as not quite right. I didn't dig far, but it seemed to imply that chemo is a scam and that no doctors can be trusted not to lie. There was another, moderate sized one that sounded good, but all of the posts from the last several weeks were spam, specifically sexual spam. A lot of the groups had fewer than twenty members and/or hadn't had a post in years.
I signed up for the ACS Cancer Survivors Network support forums, but what I found wasn't really what I want. The breast cancer forum is pretty much all questions and answers with an occasional bit of personal news. It doesn't seem to be subdivided in any useful way. I think it's likely to be more useful for getting anecdotal information, the sort of stuff that doesn't occur to the medical people to discuss. I'm not going to delete my membership, but I think I'll only go there if I have specific questions. I don't feel like I have a lot to offer for the questions that I saw because they're mostly about reconstruction, medications I'm not taking, dealing with more severe grades of cancer than I had, and chemo. This might have been a useful place for me last fall when I was searching so desperately for front closure compression bras in my size (I never did find any).
The site does have the option of posting a blog, and I expect that commenting on those posts is possible and might lead to more of what I'm looking for. I'm just not prepared to deal with creating a new blog right now. I'm spending three or four hours a day on the two I've already got. I really don't want to add to that, and I don't feel like I would benefit from cutting back here.
I think that I want something either very, very organized with comment threads sorted into specific categories (and including an emotional support category, a venting category, and an off topic category) or something that has multiple conversations interspersed with each other the way that Yahoo groups end up doing. What I need is some sort of social place to hang out with other people who've dealt with the same issues I have. I'm not really interested in a place that only talks about diagnosis and treatment and research. I don't object to those topics; I just don't want only that. I want something that addresses us all as people rather than a disease, a place where I can say when I'm scared and have people understand and where I can talk about that fifteen minute walk that I couldn't manage six months ago but did today and yesterday. I may be dreaming, though.
I mean, you all help with those things, so I'm not unsupported. I wonder if the lack I'm finding has something to do with the average age of women who get breast cancer. I'm about twenty years too young by a lot of standards, and women my mother's age aren't as likely to be setting up online communities as women my age or younger. That means a skewing toward people with more aggressive cancers and more complicated treatment paths because those are big enough to make people who otherwise wouldn't go online go looking for community. That probably also explains why the groups my sister has found are all on Facebook. It's a platform that a lot of people (who are not me) know how to navigate.
As to me and Facebook, there are a lot of factors. The first is that Scott has stated that he's never coming to LJ/DW because he thinks I should have that as my space. I kind of feel like Facebook is where he's set himself up online, socially speaking*. The second is that I'm not keen on the company behind the website. The third is that I really loathe the layout and interface and general behavior of the site based on watching what Scott does there during the last ten minutes before we turn out the light every night. I don't want a site that will load new content before I specifically ask for it. If I follow a link and then come back, I want to be in the exact same place in the page where I started, not back at the top with new content loaded. That was one of the things that I loathed about Tumblr that made me not bother going back there. I've been poking at Google+ for Ingress reasons, and I despise that set up, too (whoever thought that two columns that had things starting and stopping in different places and that scroll infinitely was a good idea should be fired. If it were paginated so that I could get to the bottom of one column and then go back up to start the second, I'd find it workable. As it is, no). It doesn't help that I much prefer a text only experience, and nobody seems interested in posting that sort of thing now.
*I don't think Scott would object to me joining Facebook, just to be clear, not even if it was just for something like panda videos. I just feel like I oughtn't because it's his space. Of course, I'd also not object in the least to him setting up on LJ and/or DW, so... I don't know.
evalerie, I poked around Yahoo Groups to see if there were any useful breast cancer support groups. Sadly, there really wasn't anything that I thought would be comfortable or useful. There was one large group that linked to a site (which the mods said was their base site) that pinged me as not quite right. I didn't dig far, but it seemed to imply that chemo is a scam and that no doctors can be trusted not to lie. There was another, moderate sized one that sounded good, but all of the posts from the last several weeks were spam, specifically sexual spam. A lot of the groups had fewer than twenty members and/or hadn't had a post in years.I signed up for the ACS Cancer Survivors Network support forums, but what I found wasn't really what I want. The breast cancer forum is pretty much all questions and answers with an occasional bit of personal news. It doesn't seem to be subdivided in any useful way. I think it's likely to be more useful for getting anecdotal information, the sort of stuff that doesn't occur to the medical people to discuss. I'm not going to delete my membership, but I think I'll only go there if I have specific questions. I don't feel like I have a lot to offer for the questions that I saw because they're mostly about reconstruction, medications I'm not taking, dealing with more severe grades of cancer than I had, and chemo. This might have been a useful place for me last fall when I was searching so desperately for front closure compression bras in my size (I never did find any).
The site does have the option of posting a blog, and I expect that commenting on those posts is possible and might lead to more of what I'm looking for. I'm just not prepared to deal with creating a new blog right now. I'm spending three or four hours a day on the two I've already got. I really don't want to add to that, and I don't feel like I would benefit from cutting back here.
I think that I want something either very, very organized with comment threads sorted into specific categories (and including an emotional support category, a venting category, and an off topic category) or something that has multiple conversations interspersed with each other the way that Yahoo groups end up doing. What I need is some sort of social place to hang out with other people who've dealt with the same issues I have. I'm not really interested in a place that only talks about diagnosis and treatment and research. I don't object to those topics; I just don't want only that. I want something that addresses us all as people rather than a disease, a place where I can say when I'm scared and have people understand and where I can talk about that fifteen minute walk that I couldn't manage six months ago but did today and yesterday. I may be dreaming, though.
I mean, you all help with those things, so I'm not unsupported. I wonder if the lack I'm finding has something to do with the average age of women who get breast cancer. I'm about twenty years too young by a lot of standards, and women my mother's age aren't as likely to be setting up online communities as women my age or younger. That means a skewing toward people with more aggressive cancers and more complicated treatment paths because those are big enough to make people who otherwise wouldn't go online go looking for community. That probably also explains why the groups my sister has found are all on Facebook. It's a platform that a lot of people (who are not me) know how to navigate.
As to me and Facebook, there are a lot of factors. The first is that Scott has stated that he's never coming to LJ/DW because he thinks I should have that as my space. I kind of feel like Facebook is where he's set himself up online, socially speaking*. The second is that I'm not keen on the company behind the website. The third is that I really loathe the layout and interface and general behavior of the site based on watching what Scott does there during the last ten minutes before we turn out the light every night. I don't want a site that will load new content before I specifically ask for it. If I follow a link and then come back, I want to be in the exact same place in the page where I started, not back at the top with new content loaded. That was one of the things that I loathed about Tumblr that made me not bother going back there. I've been poking at Google+ for Ingress reasons, and I despise that set up, too (whoever thought that two columns that had things starting and stopping in different places and that scroll infinitely was a good idea should be fired. If it were paginated so that I could get to the bottom of one column and then go back up to start the second, I'd find it workable. As it is, no). It doesn't help that I much prefer a text only experience, and nobody seems interested in posting that sort of thing now.
*I don't think Scott would object to me joining Facebook, just to be clear, not even if it was just for something like panda videos. I just feel like I oughtn't because it's his space. Of course, I'd also not object in the least to him setting up on LJ and/or DW, so... I don't know.
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no subject
Date: 2016-06-17 01:03 am (UTC)no subject
Date: 2016-06-17 01:23 am (UTC)no subject
Date: 2016-06-17 02:30 am (UTC)Sis just passed her 4 year anniversary of the breast cancer surgery with flying colours, and the day after I heard about a workmate's aunt who just celebrated her 20 year anniversary. I am crossing all fingers and wishing with all my might that good news comes in threes, and you will be the number three...
no subject
Date: 2016-06-17 05:18 pm (UTC)My main fear is a new tumor because having had one increases the odds of a new one. The main reason they did radiation for me was because of the possibility that something was starting that wasn't detectable yet. They told me that, if I was ten years older, they wouldn't have bothered with radiation.
no subject
Date: 2016-06-17 05:44 am (UTC)I'm not familiar with any of the cancer communities but you could maybe take a look.
https://www.inspire.com/categories/cancer/
This one has some weird posts but some might be relevant:
https://www.inspire.com/groups/living-well-with-cancer/
Alternatively, if you use Facebook only for the communities, maybe the constant reload issue won't be as distracting, and since Scott won't be in any of the communities you join, you don't have to feel like you're encroaching?