STEAM ROOM FOR ANGER
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Artista928 that's terrible. My FIL, whom I never got to meet, died from the normal ALS (although the normal version sucks too). The cruel irony is that my MIL has Alzheimer's and was just dx'd with at least stage 2 melanoma but based on the path report, it's almost certainly metastasized. I'm absolutely furious that we cannot get her nursing home doctor to contact us--I'm sure she's super swamped but this dx was in OCTOBER and she (the MD) was supposed to transfer my MIL's care to a derm who could at least stage the freaking thing.
This is all complicated by distance. We live in the Kansas City area and she is in Tulsa.
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that's awful edj3. I really believe the cruelest diseases are ALS and it's forms and dementia. Add another shitty disease on top and that's just beyond cruel.
I think older people in general get the shaft in healthcare. There are caring providers out there but too many brush off the elderly with a kind of why bother, wasting my time mentality. Add a disease let alone terminal one on top. I remember where you'd see doctors whose specialty was geriatrics. Now you're hard pressed to find many as I think they've morphed under family medicine. You're hosed more if you're poor and elderly. I really do feel more for that group than kids because people come running for them. Not so the elderly. It's quite upsetting and sad.
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I agree with you Artista. ALS and conditions like that scare the pants off me. I will not go through the end stages of those diseases (or dementia) if I can help it.
I'm a geriatric social worker and dementia is just so sad. There are some good and sweet moments but those diminish way before any of us are ready. My mom has dementia and I hope she dies more quickly from something else. Of course she is very healthy other than her poor brain.
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Iwrite: I have read your post in death thread (I am an active reader there) and would like to have a giant "like" button. Wise Wise post
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I second what Euphoria just said! Great post lwrite!
Jaycee, you're not missing the point...we post here and elsewhere, because some of us don't like petty tyrants....also, in my five years on these boards I've never been offended by the youths, only stage four patients with control issues..
There's a simple way to silence the inopportune voices that I use when necessary: I simply ignore that person..case closed, problem solved....with no attention, they naturally move on...so, no hurt feelings...no mods involved, nothing...live and let live...
I mean who has the time and energy to read and answer every single post anyway? Who does that? Who has time to get offended while being constantly abused by the cost of medications, the futility of treatments, unreliable toxic tests, nausea, aches and pains?
I'm enjoying hanging out with Mel in her living room with her friends...it has open windows and lots of oxygen....plus Runor's insights . ..
I know this is politically incorrect, but what the heck! I have been successfully breaking paradigms my whole life, why stop now...??? Why oh why reinforce the rules to basically silence only Runor? I'm sorry, I can't wrap my head around that one...she had been peacefully posting all along...0 -
Frisky,
I understand that not every stage IV member feels that the stage IV threads should be limited to stage IV. While we all have different experiences at stage IV (for instance, I love my medical team, they have always been completely above board and honest, I have not suffered too much physically from treatments or medications etc.) the mental and emotional toll is very different from those at lower stages (not that any cancer dx is a cake walk). Ultimately, the moderators and stage IV members themselves (the majority) have been comfortable with limiting posting to the stage IV threads. I also agree that runor as well as other members would probably be quite respectful in their posting if allowed, but... many members were not back in the day. I doubt anyone was purposely disrespectful or insensitive, but many people can not understand the total mind fu*k that stage IV can be and thus make insensitive posts without realizing it. I suppose that this issue could be brought up to the mods again as the temperature of the stage IV members may have changed, since the last time this issue reared it's head. Take care.
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Exbrngrl, I totally get your perspective, it's just that I have never encountered the issues you are describing, but I respect other people's perspectives on this issue...they are just not my type of people...
I still don't understand the logic of kicking off Runor, which was the only result from the complain to the mods...what problem was resolved?Look, we have simply different outlooks, you as a school teacher, I'm sure depend on rules and discipline to control your students...i understand it would be an utter disaster otherwise
I instead, I've been creative since I was a child, I can't help myself, and that included challenging my professors in lengthy discussions...I have been an effortless honor student here and in Europe...learning comes natural to me...and continues even now...with half of my brain eaten away by chemotherapy...following is not my forte...
being creative means coming up with better solutions to problems...something I have done quite successfully professionally....
Do you remember Steve Jobs and his speech at Stanford...??
Do you remember his THINK DIFFERENT campaign...well I am—metaphorically speaking—the woman throwing the hammer on the screen...STEVE was my hero and I can't but think differently...see me as an untamed wild horse...Even now, I 'm fighting cancer conventionally and unconventionally...
so yes....I guess I will remain on this side of the fence...will silently enjoy the posts but not contribute, since I'm sure some would find my perspective outrageous at times...regardless of being stage four...
Ultimately, I wish all only peace and wellbeing....in whatever way they can find it....isn't what this site is all about? What we're here for?
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I'm going to second what exbrnxgrl said. I've been hanging around this site for a long time, and have been through several rounds of discussion about closing off the Stage IV forum. The first few times, the decision was made to leave the forum open to all, but finally there was enough support, both from the majority of Stage IV members, and from the rest of the community, to close off the forum.
As exbrnxgrl said, there are many non-Stage IV members who would be very respectful, would provide valuable input, and would probably be welcomed by most of the Stage IV members, even many who would otherwise want the Stage IV forum to be restricted. But then there are the others, who don't mean to be insensitive, but in their fear or inquisitiveness, write some incredibly thoughtless posts that can be very hurtful.
The decision to close off the Stage IV forum came after years of discussion and debate. Having seen the posts in the Stage IV forum before this restriction was put in place, I support the decision. That said, I really appreciate when Stage IV members offer advice in other forums, and participate in discussion threads such as this one.
Edited to add: Frisky, I didn't see your reply to exbrnxgrl until after I posted. Let me add that when the decision was made to restrict the Stage IV forum, there were some Stage IV members who felt as strongly as you do. But the decision was made in support of all Stage IV members, recognizing that those who want to mingle with the whole community have every other forum open to them, whereas those who prefer to communicate only with other Stage IV members only have this single forum.
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I understand the point of being stage IV and I apologize if I contributed to generate controversy Now I see that I could have sent PM to address someone in particular
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Euphoria you have done nothing wrong...like they say this issue precedes us by decades...
Beesie, I understand the needs of the stage four majority and respect that...I do...I wish you all peace and calm...remember stress and inflammation doesn't help any of us...luckily, like you've said, there are many amazing threads for people that think like me...
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Frankly, if something is to be sacrosanct, move it. Put it in a glass case. Take it out of the public eye. Put it behind a locked door. Make it password protected. If exclusivity is the requirement of the day, then by all means, be exclusive. But take it somewhere else. This whole 'we want to be with you but separate from you, near you but out of reach of you, one of you but with special spaces that no one else is allowed to play in' , does not say ANYTHING about the disease but 100% about world view and mindset.
If anyone, for one second, thinks that I am saying my mental state is the same as a stage 4 mental state, then they are simply not reading, not thinking and not paying attention. If anyone makes the gross mistake of believing that I do not respect, with sorrow and horror, the state of stage 4, then you have not paid one iota of attention. My issue is with the STRUCTURE. How it is set up. I DO think stage 4 should have its own place to post, where NONE OF US CAN SEE IT AND NONE OF US ARE INVITED EXCEPT BY A PROCESS OF SCREENING. That would, once and for all, settle the problem of the velvet rope.
There are multiple issues here, many of them having to do with philosophy and public behaviour and not about cancer. THey are all muddled together, regrettably. But with utter clarity let me say again, the mods (or whoever designs sites) need to clean this mess up. Because it is a mess. Pointing at the sign and saying 'well if you'd just read the heading and not cross this arbitrary line.." Yeah. Not working. I am sure I am not the first person to say something that was deemed inappropriate based NOT ON THE CONTENT...but based on my not being a member of the club. Which is what this boils down to. So if, for whatever reason, there needs to be an exclusive club that gets to bar people from entrance, move it. Away. It can then function without controversy and without the presence of those who don't meet the requirements. Because to get the secret code word, you'd have to prove you were stage 4.Me posting on a stage 4 thread might be deemed as me not respecting them.
Anyone complaining about it based on nothing more than a bio written at the bottom of my post is them not respecting me.
Take the whole shooting match to a separate place.
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runor if you want to attack me personally, have at it if it makes you feel better. After somebody just had to drag up the topic again after I had hoped it finally died, I tried to keep my post about my feelings on the subject polite and respectful and you apparently still took issue with it. I don't know who complained to the mods about you posting there but I'm sure it wasn't anything to do about the content of your posts, only that you weren't Stage IV. I'm sorry you don't like the way the forums are set up, there's lots of things that I don't like about them either.
I really wouldn't care if the Stage IV section went away because I have a fantastic local metastatic support group, but there are many who don't have a local group in their area, and I'm glad this forum is here for those who don't.
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I've been these boards for 10 years and would never dream of posting on the Stage IV forum. I remember all the issues and discussions and things quieted down after the decision was made.
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I was dx stage 4 this year. I lurk on their threads, but don’t post. Why? I’m still learning about what I may have to deal with in the future. The meds. The possible s/e. Maybe because it truly hasn’t sunk in my thick head. I suspect there are a lot of lurkers there, who for their own reason don’t post. It would be a shame to loose the wisdoms and courage of those ladies who do post.
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Frisky,
Thanks for your reply and reading the description of your persona is fascinating. I will say that you have made an awful lot of assumptions about who I am based on little knowledge and fewer facts. You couldn’t be more wrong, but it did provide a good laugh . I shared your analysis of who I am with my my younger dd. She also thought you were quite funny. In the famous words of Jimmy Buffet’
“ Don’t try to describe the ocean if you’ve never seen it. Don’t ever forget that you just may wind up being wrong.”
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LoriCA - Your post was perfect.
runor - It's not all about you. I strongly disagree with your proposed solution. Posting on this site does not require proof of breast cancer. Asking for proof of MBC would be wrong. I would never submit to that. If you think the Stage IV forum should be out of sight, then please block it from your view.
I've been around here for 4 years. Initially I blocked the Stage IV forums entirely because I could not handle seeing them. For the past 2 years I've been dealing with possible progression. I appreciate being able to read through the Stage IV posts to learn as much as I can, and I never felt “less than" for not being allowed to post.
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you being a teacher is all I know about you...but now I know you're also an ocean...it will be helpful next time I go swimming...you see why I need the company of my peers? I don't get you at all...I was assuming that teachers would rather have discipline in their classroom, well I was wrong...what can I say...sorry...keep up whatever else you're doing, and now I will have to say goodbye...I have more urgent matters to attend...mo called with news of progression...
Good luck to all of yous...it's been really nice knowing yous...
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"Frankly, if something is to be sacrosanct, move it. Put it in a glass case. Take it out of the public eye. Put it behind a locked door. Make it password protected. If exclusivity is the requirement of the day, then by all means, be exclusive. But take it somewhere else."
runor, at the time the decision was made, that was discussed. I don't remember all of it but as I recall, there were some logistical issues to blocking off the forum, and concern that some Stage IV members, particularly those newly diagnosed, might be locked out. There was also a recognition that those who are not Stage IV may want to check on friends who have moved to the Stage IV forum, and might want to read some of the Stage IV content because of issues with their own diagnoses, or that of family or friends. The idea was not to lose the value of the content for everyone here, but out of respect for the Stage IV community, to put a stop to the posts and questions that were ignorant and hurtful, and that were driving Stage IV members away.
Why is this being relitigated? This issue tore the board apart several times until the decision was made.
Three of us have commented who were on the board back in days before the Stage IV forum was restricted. We've all commented to the effect that this decision resulted in a more peaceful and respectful space for Stage IV members.
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I have often asked myself why Runor was ignoring the polite request for non stage IV people to not post on certain threads. My guess was that she enjoyed the praise for her writing. Otherwise, I think it is very insensitive to not respect the difference in diagnoses. My twin sister passed from MBC so I have seen the devastation of hearing those words. I am appreciative of being able to read these threads and they have helped me by seeing how other people handle this diagnosis. However, I would never join the conversation out of respect, and the fact that I am not stage IV. I also must admit that I found Frisky’s comment about teachers rather amusing, since I am a teacher, as well.0
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I accidentally posted on a Stage 4 thread once because I wasn't paying attention. I felt awful about it afterwards, but luckily, it wasn't on a sensitive thread topic (before I knew how to delete my posts). There are so many places to post here that I cannot fathom someone deliberately posting in that group unless they are actually living with Stage 4. I do read occasional posts there because of friends living with Stage 4, but i would never intrude. If I really wanted information, or advice on how best to help one of those friends, I would use the thread designated for that.
We all have challenges with our diagnoses, and there are many places to vent, let off steam, have drama moments, without trespassing on that one section whose members have our issues PLUS many that we do not. If someone doesn't like seeing that fenced-off section, well, it says more about you than the people who belong there. The solution is simple. Don't look.
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I agree with stage 4 giving them their space. If they want our input as well there is now a stage 4 forum for everyone. I do appreciate being able to read how they are doing, coping. There's much to learn. I respect them for letting us read their posts if we want to. And there is a if you aren't stage 4 but want to post in their forum where chrissyb and others are so kind to respond.
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LoriCa, my post was not aimed at you, nor anyone in particular. I was surprised that you thought it might have been and if I was unclear, I apologize. I was speaking about the issue at hand in general terms. (I realize now that I did quote your words about stage 4 being sacrosanct, but still was not aimed at YOU as much as that particular line)
Beesie, I believe that it would be possible to structure the site in such a way that stage some 4 members were not locked out. I believe there is a way to extend to all stage 4 posters, past and future, a private invitation to join a room that takes place off the beaten path. By offering a dedicated private invite to stage 4, then no stage 4 person would be excluded. Computers are capable of all sorts of wizardry. This is quite doable. There could still be a stage 4 heading on the public site, but a stage 4 ONLY thread behind an invitation only password. In fact I am amazed that stage 4 people themselves are not pushing for this very thing. There seems to be a clear line drawn in the sand by some people. They want everything on this side of the line to be theirs alone. The line has been crossed. From what I gather this has come up before (maybe before I joined?). If this has been on the radar more than once and no change has been made, maybe a change needs to happen at a higher level and get some people on the board who are a bit more responsive to the temperature of the room. Do ALL stage 4 people want to exclude us lower stages? No. Are there some who obviously do? Yes. Then why not give them their own place where no one can blunder in? It does not seem unreasonable to me. It seems more comfortable for everyone than this!
No. It's not all about me. And because I am not that sort of person, it would be a cold day in hell before I would deem someone my inferior and boot them out of the room I was sitting in. Who am I to judge the worthiness of someone else who shows up in a shared space? I posted in the stage 4 only thread, as I have said before, frankly without looking. It pops up in my favorites list and I don't really read the heading but go to the newest posts. When I posted in it I really wasn't thinking oh goody, goody, I'm breaking the rules. No. I just posted because I felt moved to say something. That anyone has assigned a nefarious intention to my posting says everything about them and nothing about me. Some days you have to work pretty damn hard to be butt hurt over something and I guess on that day someone sure did. Because I don't think my post was offensive and sure as hell was not intended to be. Some people can't read. That failing is not my fault (except on the heading of the threads I post on and I did not read and that IS my fault!) .
AliceB, if accidentally posting on a stage 4 only thread made you feel bad, there is something deeply damaging and wrong with this entire site. I assume that you come here with good intentions and a willing heart. As most of us do. I would hope that any post you made in a stage 4 thread was met with grace and acceptance and not the peevish bit of howling that is going on now over me and my poorly placed post. You do not post drivel. We all offer what we have to offer. When someone feels entitled to reject those offerings, for whatever reason, when they feel they need a place that is just for them (and I am not opposed to those reasons, just to be clear, I get it) then it's time to move to a quiet, private, secure location. It's about site structure. This can be done.0 -
runor - Still get the feeling this is personal to you. If you’re not allowed to post there, then you think the rest of us shouldn’t be able to read and learn from them? Sounds like the kid taking her ball home because the other kids aren’t playing her way. Did you read above that some of us value their posts with no need to post? I’ve been prescribed Ibrance without being declared stage 4. Your proposal would prevent me from reading the Ibrance thread. If I start a new Ibrance thread, I would miss out on the years of experience already posted. Your proposed structural change is not satisfactory. Please let it go.0
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Non-stage 4 people posting on stage 4 threads is kind of akin to cultural appropriation. They don't have to hide from us, and it's cool that they have a thread for people to post questions. But trying to join conversations without an invitation, or worse, offering advice, is not sensitive or nice.
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Runor, I think you are missing the point. You write these long, indignant posts commiserating with people that have received a diagnosis that you do not have. I was perplexed at first thinking that you were stage 4, and just didn’t want to list it. It is as if you are an impersonator and I cannot understand what motivates you to continually post on threads where you do not belong. And now, when you are finally called on it, you want to exclude the people that object to someone who doesn’t bother to check the heading before they post?0
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runor I'll accept your apology and let it go at that, but please don't try to pull some passive-aggressive bullshit on me and tell me you were surprised that I thought you were addressing my post directly when you specifically addressed things I had posted in your long-winded rant. It was obvious that it was my post that set you off this time. Don't mistake me for being weak or stupid just because I've learned to (usually) stay polite and respectful. I can type in allcaps just as well as anyone around here if I wanted to. Maybe it would be a good idea for you to take the Stage IV threads out of your "favorites" so you don't make an innocent mistake again and get your feelings hurt when the Mods ask you to stop posting. Like I said in my other post, no one cares when someone makes a random occasional post, it's only when people repeatedly makes their presence known that it comes to someone's attention. And stop with the shit about being judged unworthy, deemed inferior and booted out of the room (I honestly think it's hysterical that you would think that someone who is Stage IV would think of anyone who isn't as "inferior"), or that anyone has assigned a nefarious intention to your posting in Stage IV, or my favorite about how your "humble offerings" to us poor Stage IV folks were rejected. Seriously the drama is over the top. Stop accusing other people of being butt hurt when you're the one who hasn't been able to let it go when the Mods asked you to respect the rules that have been in place for years. The rest of us are ready to move on from this drama (except for the ones eating popcorn).
Work in a constructive manner for a rules change if people support it, or stop with this non-stop drama that only creates tension in this community. Stamping your feet, posting long rants using allcaps, and saying rude things about other people isn't going to change anything.
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LoriCA - Arghhh! No popcorn! I’m fasting! Well stated.
Seriously, runor, let it go. Some of us just don’t appreciate your melodrama. I know you have a following, but it isn’t 100%. Let it go. It’s not worth our time.
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I'm getting caught up on this thread, so this is several pages back, but I just had to comment:
she's of the opinion that if my cancer comes back it's because I 'manifest' it, by thinking about it. By pondering it. By worrying about it. Don't you know that people cause their own cancers? - Runor
I work for someone who believes this nonsense, and it drives me batshit crazy. So offensive to be told that I got cancer because I was thinking about it.
1. It's nonsense. Absolute nonsense.
2. I was 39 at diagnosis, and cancer was definitely not on my radar. Other than pinktober, I never thought about breast cancer - hey, maybe I can blame pinktober for giving me breast cancer? HA HA
3. This person actually tells people to "heal themselves" by thinking healthy thoughts. It's irresponsible and dangerous.
Edited to add: Artista, I agree with your work example - person thinks they are going to get fired -> poor attitude/work ethic -> gets fired. That's more of a self-fulfilling prophecy, though, and I think that does work both ways. I can see how positive thinking could make someone a great salesperson, for example.
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I do love good popcorn but with a movie, or a TV show. Just had some yesterday.
The mods make the rules. We should follow them. It's that simple. It's not about exclusivity but there are different concerns for earlier to later stage. No one thinks they are better than someone else. It just keeps the peace in threads that people don't need extra stress in.
I used to be on the fence about this issue but the strife it causes now makes me believe it is a good thing to have threads for the different stages. I still read most of them but I stay out of the ones listed as earlier stage cancers.
The time I can see an exception is if the thread is for a stage IV person who is friends with people from other threads. Patty Peppermint and Lita57 come to mind. Micmel's thread as well. These threads were created for friends and the subject to have a thread in one place to talk. Stuff like death and dying would not fit this scenario.
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runor,
Let me provide a bit of historical perspective on the issue. I believe I’ve seen the issue raised 2-3 times over the last 8+ years. It becomes an issue not because a stage IV members raises it, but because non-stage IV members raise it. The majority of stage IV members , the ones for whom the stage IV threads exist, wish to keep it that way. Why is it so difficult to respect their wishes? Why do you, a lower stage member, feel it is so important to structure the stage IV threads to your preferences rather than the preferences of the stage IV members themselves?
As to creating a separate locked forum, well, again, that’s not what we wanted and the mods support that. The stage IV threads are clearly marked so you never need to open one if you don’t want to. Runor, the restrictions were put in place with the support of the stage IV members themselves, it seems like an easy thing to respect. I hope that you never move to stage IV because our fondest wish is to have no new members participate in our threads. Won’t that be a wonderful day? Take care.
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