My Husband, My Life, My Love, My Family, My Cancer
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Runor... 👏🏻👏🏻😱😬❤️😡😂😴 all I can say
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Karen, I"m not sure what you were typing, I just see a lot of little symbols. BUt I will hope it was a positive review.
In other news... seems there is a politically correct bent to BCO that I am frequently butting heads with. I have been asked NOT to post on the death and dying thread because I am not knowingly dying. Therefore anything I have to add is perhaps going to insult someone who is currently metastatic. Yeah. Okay. Whatever. I am really, REALLY thinking that my time here on BCO might be over. Until I"m metastatic. Then I can come back with my hat in hand and ask the mods if I have achieved an acceptable level of disease to be allowed to post with the big kids.
Feeling like I've had about enough right now.
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okay... had to put aside some Holiday time to answer this question here laid in front of us. Runor. I don't for one second understand why rules change mid way on threads. I mean seriously. Lets hand out some Badges and holsters so we all understand who's really in charge here I mean really do you not (mods) have anything better to do than to pick and pick at everything funny and uplifting? Or gut wrenching it honest and real.? I didn't read whatever went on over there and I won't , but I can tell you I wasn't treated fairly either so you're not alone. I know its obvious I don't post as much either. Sometimes I read the front menu page of BCO at all the women's brains they want to pick for their story books on how they helped millions of women. Well guess what? You may help Women , yes. But the way you “advertise“ our personal stories like it's your propaganda stops me in my tracks. It's like looking for a job on a billboard. “Wanted opinions and stories on MBC women with one breast, one ear and a huge supportive family's opinion on how they cope with MBC disease". Seriously? I'll tell you how we cope. We go bat shit Crazyis how we cope. Leave us alone We don't really bother anyone and why you chose certain honest voices to silence is not something I agree with at all. 🤬🤬!
BTW we are ALL actively dying.
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YES WE ARE ALL ACTIVELY DYING! Thank you Micmel. Honest to god, thank you.
But...there are those who very stubbornly cling to their right to exclude others from the front of the bus. Racism based on advanced cancer. Some people are just more...cancery than others and thus must be accorded their own roped off area? My marginally cancerous self is annoying to those who are more cancerous? I mean, what the actual fuck? Does this sound crazy? It kind of does. Except the mods have said exactly that.. Let's not all just be desperate people who have had our lives derailed. No. That isn't good enough. Lets EXCLUDE the slightly cancerous from those who are excessively cancerous because these two groups of people could not possibly have anything valuable to say to each other, could they? Because the ONLY people who contemplate death are metastatic people, right? The rest of us just take our diagnosis and then skip off into the sunset, tralee trala, with our fingers up our asess, not a care in the world, hooray, hooray I am cured and will live forever. I don't have to think about death. My own death has NEVER entered my mind! I am am vacuous, empty headed, fluffy stage 2 person. What the hell do I know about anything? NOTHING. Apparently. As evidenced by mods who told me to go play with the less cancery kids and leave the big cancer kids alone in their sandbox.
Let me say this (from my lofty position on my soapbox) what we have in COMMON far exceeds what we have that differs. A community is built and cared for by shared commonalities and blown apart by those few who insist that they ought to be special and get special treatment. If anyone bitched about my honest offering of help and support, they should be responded to by being reminded that they can leave any time they want to. That MY voice is 100% as valid as every other voice on here. And no, no one is so special that they get to edit, remove, deny or muzzle anyone else. If you feel as a metastatic person that that is you right, then the problem you have is not with less cancery me, but a problem of your own personality. It has nothing to do with cancer and everything to do with who you were before you ever even got cancer.
Am I saying that metastatic people don't have a seperate and dire situation? No! I am not saying that at all. If anyone reading this thinks I am saying that, read again and again and again until you figure out that that is NOT what I am saying. But having metastatic cancer does not elevate you to any position of sainthood or specialness in which you get to denigrate the experience of others by setting your own experience apart as if it is actually apart. It kind of is. But mostly, it isn't!
I posted in the death and dying thread because I struggle with death. At 27 I watched my dad die an ugly death of cancer. I stood by his bed as he drew his last breath. It has haunted me since. I made a post that was an honest offer of my experiences and what I hoped would be helpful. Apparently someone put their hand up and said, Teacher, I don't like Runor and I don't think she should be allowed to contribute to the discussion. And the teacher told me to be quiet. The teacher should have told whiney to shut the hell up and go stand in the hallway until they figure out that although they don't have to like me, my voice is 100% as permissible, anywhere and everywhere, as theirs.
BCO is either inclusive or exclusive. Pick one. But quit talking out of both sides of your mouth. (I am seriously pissed off, but am easily pissed off, so maybe ignore this)
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Runor...your exclusion from the Death and Dying thread is outrageous and you have the right to be angry...I hate censorship in general and even more when based on imaginary problems...
stages are not important as the content and depth of the share. I have been following and have enjoyed your posts....and will continue to do so...
Hi Micmel and all....I have been quietly sitting in your living room, enjoying the various topics of your conversations. Thank you all for your insights and honesty!
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Frisky~ Welcome to our living room. Glad to have to you here. I just want to be able to have a place where all are welcome and all know they are loved. That’s all I want. I enjoy runors humor and outlook. Just like I enjoy everyone’s. I wanted to welcome back Karen and hope she is feeling apart of the family. I have been busy with family. But checked in when I could .
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welcome to our second home Malinda . Mara is a caring sweet woman! This is a tight good group of ladies. I hope you are happy here with us welcome back Rosie!
Lynnwood 💗♥️!!!0 -
I am horrified that after a thoughtful, helpful, meaningful and insightful post in the death and dying thread, runor was asked to stop postingt there. It's really making me re-think participating here. I don't give a flying f*** if runor is stage 4 or not. I'm a big girl and can handle or scroll past anything that isn't helpful in a stage 4 thread. For runor to be censored - I can't even and I'm really angry about it this morning. Honesty I follow runor around a little because runor is helpful and articulate for me and I feel really connected with runor. I feel that bco has been super helpful to me in so many ways. I spend a lot of time here, but one thing I've learned is that bco asks us survey questions in the pinned posts and then uses our answers in other social media platforms like facebook. Well THAT is so much more objectionable to me than a non stage 4 person posting in a stage 4 thread, especially someone like runor. And guess what - we're ALL dying so it should be an open topic of discussion. I appreciate the mods volunteering (?) their time to monitor threads - I really do, but this censoring of ADULTS is really just a way to make thier tasks easier when you boil it down. I also object to anyone attempting to "protect" me from posters who are not stage 4. But a the end of the day it's bco's town here and they get to make the rules.
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Ok. Took a deep breath. Hi Frisky! Nice to see you here!
I took this week off work and had all good intentions of getting some things done around the house but I had this stupid emergency root canal tuesday after a week's toothache. Then my back realllllly started hurting. I tried to take a little walk round the block yesterday and about halfway through my hip started to hurt really really badly. So. I limped back home. It made me think I can't take walks alone anymore and scared me a little.
Also I think between the tooth abscess, the root canal, the back and hip hurting and six weeks of Afinitor I'm just really tired. Yesterday i felt some pretty significant fatigue for the first time since I've been on treatment. Anyway, that means I have been sitting in the chair in my jammies most of the week. I've watched 11 episodes of Schitt's Creek which is hilarious. I am about halfway done with the Crawdads Sing book (recommend), have played zero piano and done nearly zero housework. Wheeeee!!!! I feel like a slug but I think I needed the rest. I feel a little more energy this morning but am gingerly moving becuase of this back. I got my MRI results back for lumbar spine and I have "severe foraminal stenosis" which means a lot of low back pain and my leg isn't working that well. I see the back doctor in about a week for results of the rest of my spine and any surgical suggestions he might have. Not sure I want to entertain back surgery.
DH is working a lot. My daughter is in Europe. My son's band is playing in several shows this weekend around town. Iv'e finished my Christmas shopping from my chair. It's been soooo quiet. A little too quiet but my dog and I have enjoyed it mostly. Tomorrow I go to see my granddaughter's very first soccer game. Next week is my piano studio recital. Lots of busies coming up.
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Runor, your posts are great, true and often hilarious and I have no objection to anything you posted on the death/dying thread. I hope you stay. We want you here.
That said, without clear boundaries I could imagine a time when that thread could become inundated with fearful, newly diagnosed early stagers looking for someone to tell them everything is going to be ok. I find, especially now, that I just don’t have time to make anyone else feel better about this. I sometimes have conversations with people who say that anything could happen to them, that we’re all dying really but it’s just not the same, they have a good shot at enjoying retirement, while we are literally planning our funerals. Anyway, just my two cents that no one actually asked for lol.
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Moomala~You kick that ass sister, I fully agree with you. I am a big girl and can handle reality and what offends me, I won't cry about it unless it's not right. Runor is my friend. I look Forward to Her hilarious posts and views. We are sisters from another mother! She's witty honest and I don't want her to go anywhere either. I agree with Mae that I didn't see anything that wouldn't be considerate to anyone regardless of stages. I'm not planning my funeral, not yet, we've discussed it, of course, but... isn't that what that thread is for? I guess they are enforcing the stage four rules because they decided to create them for a reason. This is an open thread, sure we lost some Regular posters from way back who I adored. (Divine, Lynne50's, Yndorian). But I won't allow this thread to be scared to say what you think and your honest feelings. Because I care. I understand that stage 4 means most likely we are going to die sooner than someone stage one. I get that. I understand that. But they still experience fear on massive levels and that I understand. Fear we all have in common. All Of us, none of us want to die from cancer. But if diagnosed, the chance is obviously there... to me, you could Block, whomever you don't want to read their comments. Which I myself have had happen to me, with someone I thought was my friend. I guess not. We can be big girls with big girl panties and handle the path we're on , because we have no choice. Stages to me are like classifications that can change in a snap. Some Women, are stage one, one year and Bam mets all Over. So the fear is real. We all feel it in different ways.
I adore you all! Let's not allow PC to even come close in our living room. You're allowed to be you here. I accept you for who are. No matter what your opinion or feeling of any topic. Let it out and we move on with our already difficult lives. We don't need our thoughts policed, in my Opinion.
Love to all. Moomala 💗 Mae...♥️
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I am chiming in here.
I have not followed Runor's post in the Death and Dying Thread, so I don't know what all was said. I sometimes glance at that Thread, but I don't stay there too long. ( Denial, fear, maybe ) I love reading runor's posts because she writes so beautifully and articulates things so well. I will say "yes, that is how I feel" and " wow, she chose just the right words".
But... Stage 4 is different. I know people in my non-virtual world that have/had early breast cancer. Seems like so many women with breast cancer now days. What gives? Another topic. Anyway, those women I know did fight cancer, did do battle with the beast. I do not make light of their fight. The loss of a breast (or both breasts), the chemo, the hair loss, the radiation, the fatigue, the fear. But they made it to the other side. They may have had to go on a medical leave from work, but they could go back after the treatments ended. They got to "ring the bell". Yes, 30% early stagers move to Stage 4 eventually, but 70% do not. They have a chance at a normal life span and a normal life. I do not.
I lost my career. I lost my health. My finances will never be the same. It impacted every aspect of my life. And I will fight till I end up in Hospice. Yes we are all dying, but, as I saw on a video from Metavivor, early stage breast cancer doesn't kill, Stage 4 does.
I do think Stage 4 is worlds away from Early stage. And I think the Threads designated for Stage 4 folks should stay that way.
I do not want to upset anyone. But this is how I feel.
And I am glad I found BCO. l have used it as a way to gain education for my future needs. I have cried here. I have posted my fears and feelings I have never told anyone else here. It is not perfect, nothing is. But I am glad BCO is here.
Edited to say---Mel you were posting as I was typing. I love your Living Room. Let's move on. No hard feelings.
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That doesn't upset me in the least Candy. i feel the same way you do about early stage being so vastly incomparable to stage 4. You and I have both had to do that jump and we both understand what it means in our lives. So big hug. I was mostly upset about Runor because she is obviously thinking deeply about this and articulates in a way that lets me know how how she understands. If it weren't so horrifyingly incorrect I would love to make runor an honorary stage 4 but that would just be sooooo wierd. ( i hope that sounds amusing because I mean it to be amusing and in no way what I would ever wish for runor)
I guess my thinking is that in the atheist thread, Christians show up here and there to let the atheists know just what a huge mistake they're making by being atheist. Nobody bans Christians from the atheist thread or vice versa. You just should know that is not the place for you. If anything comes up the mods delete posts that cause controversy or that really don't belong in the atheist thread and then a few harrumph posts and everyone moves on. Isn't that what it's like at the grocery store the day before Thanksgiving? You just take what you need, think what you want, make your own decisions and move on with your day even if someone takes your parking spot, or the last grocery cart or god help you the last bag of ghiradelli chocolate. For me it just kind of takes away from the idea that I can make my own decisions in my own best interest AND continue to practice something that is personal for me which is is to let things go that don't serve me.
I have not been here long enough to witness anything that was over the top controversial on any threads that made me think 'oh these people shouldn't be on this thread'. So I am always going to be a person who defers to the experience of others and most especially to the sensitivities of others. I was very angry this morning but mostly i feel love and empathy toward all of us. Candy I would give anything to be your friend in real time. I want to know about how this has impacted your life, how I can help, and share my stories with you too, and that's why mel's spot here is so critical.
My perspective on 'we're all dying' is fueled today by a terrible accident in our community the day before Thanksgiving in which my granddaughter's classmate was walking with her siblings and her nanny on a sidewalk when they were all hit by a car. The nanny and my granddaughters 9 year old classmate were killed. I'm really feeling that right now and I inserted it into my anger. I apologize. You couldn't have known that. I still feel that I should be able to make my own choices and scroll past things that bug me but I may be a bit more emotional than usual today.
Love you people.
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We are all in a queue line. Some toward the front of the line and some much farther back. This year I lost a good friend to breast cancer. She and I got diagnosed the same week 25 years ago. She was towards the front of the line, whereas I was trailing far behind. It made our relationship impossible. She felt I had no idea how it felt to worry about death. She was mad her cancer was further along than mine. I therefore rarely spoke about my health. Her cancer returned 4 yrs ago. Mine about 2 yrs ago. New primary. Hers was stage 4 and was a reoccurrence. She fought hard. Took every drug, operations, every action to stay alive. Once again, I have chosen no drugs meant to prolong my life. I spoke to her days before she died. She still did not understand my position. However too weak to debate. It was a good conversation. I do not think she regretted her decisions. I am glad I had that last talk.
This board is very unfair to those of us with a differing voice. I would post more, but there are a few attack dogs that refuse to respect the few of us that chose a different path. I now have lost 2 good friends, with 2 more waiting in that queue.
How about we try respecting all voices
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hi moomola...I agree with your perspective and Micmel's regarding our abilities to scroll past inappropriate posts...the truth is that the Mods don't act till someone complains....the problem as I see it is that that someone usually has personal reasons for the disruption that has nothing to do with the wellbeing of the whole community...
Sometimes it's only a power trip...but enforcing rules make sense when there's a problem that needs correcting...and not for its own sake or as an ego trip...
Now, in the case of Runor, because of the quality and beauty of her insights, the reinforcement of the rule smacks—someone like me and I'm gladly see others as well—as the height of absurdity...it's the absurdity that hurts as it smacks hard against our God's given intelligence...
Sonia, the generous and insightful lady from Argentina is no longer posting on this site...and for me it's been a great loss...let's hope we don't lose another one....
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As a non stage 4 person...
I feel there are some stage 4 threads I do not belong in, and others that are compatible/welcoming... some which probably did not actually need to be posted in "stage 4 only" when started, because the topic is broader and other voices seem relevant and welcome. For example the FenBen thread -- plenty of people in all stages have interest and knowledge (that is valuable to all) about that topic; some are early stagers trying to avoid recurrence and some later stagers trying to clear themselves to become NED. All sharing info about off label meds.
Contemplating death and dying, IMO, is not the same when one is stage 4 vs when one is early stage. Though 30% of early stagers will recur, and that is scary, it is WAY more abstract in early stage to consider yourself dying (though of course we all face fear of death it to some extent). It is a clear possibility-- but it is not a probability, and definitely not a certainty. Yes, a given stage 2 person can die before a given stage 4 person but in general it's a different ballgame. And having to endure the constant treatment is a different ballgame too.
Death and dying is a topic many "well" people never want to talk about -- and thus a conversation around it is healthy, and relevant to anyone who is alive and intelligent enough to know we all do die. I think it's a vey interesting thread but can see that my input about death is a lot more abstract and hypothetical than the opinions of people in stage 4 would be. And I can't know how different my thought might be if iI were n stage 4.
In my opinion, NOT to recognize our differentness as early stagers is possibly a bit of an insult to a stage 4 person (who, for example, might be SO HAPPY to switch places with us, and not to be stage 4!). I feel that part of the way I honor the women whose outcomes were much worse than mine is to be fully conscious of my luck-- that treatment apparently worked for me-- and realize that puts me in a different category, which means sometimes I am not welcome in certain conversations.
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i really appreciate the spaces on this site (like here!) where posters in all stages are welcome though! There is so much to learn from one another.
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Good afternoon all
Good discussion.
Since I first had stage 3 and had 13 years of healthy living before stage 4 diagnosis I can tell you that it is very different living like that as opposed to stage 4 death sentence. Stage 4 Ladies here did not have the time when they didn't have stage 4 deaths door hanging in the near future because of their denovo diagnosis. We have many young women here whose lives have been cut short, young families, careers lost and lives ripped to shreds.I relish the levity that Runor brings to this thread. In all fairness I have not read anything in death and dying thread so I don't know what the complaint could possibly be.
I don't like to talk to people who are telling me you'll be fine and garbage like that. My position for anyone who has hope for a future is go live your life.
I miss Divine, 50's girl and others that left after the last episode. Sometimes I search them up and see what they're saying and doing.
Tanya
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I just want to add that this is my home thread and I have great love and respect for all here, past and present and of any stage. I hope that whatever happens elsewhere on BCO never significantly impacts this little club we call home.
On a different topic, DH made me a cocktail called the Tipsy Mermaid and we’re having our thanksgiving today, it’s party time.
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Interesting...Santa, because I feel only sorrow for the early stage women when I read their stories.....what they are to endure in order to survive: ie massive chemo, large amounts of radiations and surgery, to discover months or years later that they were already stage four all along, but a pet was not ordered because it's convenient NOT to do so...as in the recent case of Radagasrabbit...
Then, undergoing 10 years of hormonals or tamoxifen—a well-known carcerogen—that will damage most women's bones while removing their libido....all this with the possibility of relapsing when one least expects...since we are told we are all different and what works for one might not work for another, while being treated the same way....etc etc...
You were smart to use complimentary medicine to protect your health and to continue to do so even now....and I do hope you continue to be NED for the rest of your life...but during those five minutes when I was diagnosed stage one, I had already decided I was going to forgo all conventional treatments and to go for an alternative treatment, which I did even when stage four, when my famous MO—younger than I—suddenly died from an heart attack and put an end to that possibility...can't make this stuff up....
Tanya....nothing happened on the death and dying thread...a large number of people were peacefully sharing when Runor announced to everyone's shock and chagrin that she had been told she couldn't post there anymore—not for anything she had said—but only because she's not stage four, according to one of the members, that was not involved in the topic to start with...
Illimae, enjoy that drink! Yummy!
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The only issue I have with the segragation is that some users don't put their stats in the signature line and yet post. There is no way to know if they are Stage IV or not.
I see both sides of the issue. I understand life as a Stage IV person and understand my treatments are forever. I have already made my plans for how I want to go, family knows what my final wishes are. DNR and I am not interested in multiple chemos. Living on my own, don't want to deal with it all. Don't want to burden family that would take of me. I have not seen anyone make an inappropriate comment from anyone in that thread or just keep living til cured etc. I also see the value of earlier stage asking questions because they may well find themselves in our situation and it might be nice to have people they have talked to before and not just reading.
I get that Stage IV may have different concerns but early stagers are also fearful for the rest of their lives as well. When I was first dx Stage 0, I was still convinced I was going to die. As it morphed quickly to advanced cancer, I had the same concerns. I think we sometimes minimize what others go through. I know the thread says Stage IV only but if a person has already been allowed to post, I don't see the point of removing them after the fact. Catch them in the first or second post if there is policing of what stage you are. Don't let someone participate for a few months and then pull the rug out from under them.
I also don't post in earlier stage cancer thread where people are first diagnosed. I always feel I may scare them half to death when they are first starting out on the horrific diagnosis. I segregate myself from that.
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I agree with Mae completely, as my obvious home thread, I love everyone here and respect the thoughts and things you share here with our little family. I want our little bubble of peace and quiet sharing to remain the same. The things that bring us together here, Cannot be a thing that causes problems or gets in the way. I do not police. I. Never have. Don’t like it. But I can see that some feel strongly about stage classifications and where people are posting. The thing that I find wrong , or confusing perhaps is, it seems it always one person that is singled out for things I know others also do. Double standards aren’t my thing. So I hide here really and don’t go any where else. I figure I can’t get in trouble in my own living room......
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Hello Mel and friends,
I hope you all had a lovely Thanksgiving.
I am sad to see that Runor was asked not to post on the Death and Dying thread.
I'm dropping by to add a few more reasons on why a non-Stage IV person might be visiting or posting in the Stage IV forum.
1. to learn about topics that would be helpful in caring for a Stage IV family member or friend.*
2. to follow a Stage IV BOC member who has become a friend
3. to add insight or participate in discussions
All 3 reasons apply to me.
1. My neighbor was Stage IV and I was looking for information to help care for her. I was one of the caregivers which allowed the husband to work during her last 6 months of life. Also, my mother was also on hospice.
2. Patty P/Peppermint, Longtermsurvivor/Stephanie, and others became my friends, sometimes in other non-Stage IV forums. I came to several threads over in Stage IV to follow them.
3. Having gone through hospice 4 times (Nana, my mother, and two dear friends), over the last few years, I want to share my experiences with others. Some folks on the Death and Dying had not heard of Palliative Sedation. One of my dear friends turned to Palliative Sedation. Some folks felt that hospice meant giving up. I felt it was important to share some experiences.
I do tread very lightly when I'm visiting Stage IV forums.
*I know there is a Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis. It is not visited very much. Each thread has a few posts, mostly scared people, and very little discussion. Technically Mike3121 should have gone to that forum. However, Mike and many others come here to talk on active threads.
Maybe "A place to talk death and dying issues" thread should be moved to Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute
Mominator
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That's what I suggested elsewhere mominator. Some stage 4 folks want a place to talk to others in their shoes. Not with us lower stages. There is no wrong or right in this. Our thoughts and feelings are just that and different. To force even 1 person stage 4 to just scroll by seems kind of cruel to me. Everyone is different. If you carefully read some responses in that thread, that's how some feel putting it nicely. This stage 4 open to all was created to accomodate non stage 4 who want to chat with stage 4. While many feel it's not about stage, we are all dying, etc, that's how some stage 4 people feel that their special place has been invaded even though nothing bad was said. I think telling them to scroll past is also like negating their feelings, like oh come on, get over it. No one needs to get over how they feel. This isn't a majority vote, popular poster thing. It's about mods doing their best to accommodate everyone. They can't babysit 24/7 so at least 1 person complained. Maybe it was a newly diagnosed stage 4 or someone who is on hospice and don't want advice or to hear how some early stagers who may actually even be cured feels.
I think starting a thread on death on this forum solves it. Just my opinion.
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Artista, I respectfully but strenuously disagree. There most certainly is a right and wrong.
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So if someone who is stage 4 doesn't like you/us posting on a stage 4 forum only thread, where do they go? Create a stage 4 only for real forum? Instead of stages think mets vs no mets. I've gotten pms from some who want their space there. What's wrong with that? You don't want to respect their wishes because you feel it's not right? It most certainly matters if someone with mets doesn't want folks on there forum talking about how awful it is when they're thinking you just don't know. In this thread the folks with mets have come around to where they want everyone to share. That's what this thread and this forum is about. It's gone from 2 threads to several. The people with mets can chose to come here and those who want to remain with fellow mets folks can do so without having to scroll through. I don't understand why you can't see someone else's view and respect that.
You think it's wrong for mets folks to have their own forum. Some people want that and deserve that option if that's what helps them get through the horrible journey of mets. I'm sorry but imo you're being rude in assuming everyone there wants to read about how non mets people feel, our advice even if presented well, and if you don't like it tough, scroll down a page... and it's their forum. Mets is very different to some than say some folks in this thread. To say to someone with mets too bad, I'm going to post there anyway is disrespectful. Obviously at least one person with mets feels that way for it to get reported. Do we say to that person(s) tough shit, it's wrong to leave us out? I think that's wrong.
You can't impose your thoughts on them just like they can't to you. Everyone is different, feels differently about things. There are no right or wrong feelings. Just need to agree to disagree and respect that each of us have different thoughts about things.
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I do NOT think it's wrong for mets people to have their own thread. In fact, their own thread is EXACTLY what they should have.
I think it is WRONG the way it has been handled. I think it is wrong the way the site is structured. I think it could be done much, much better and that it hasn't been is just plain bullshit and an utter lack of motivation on part of the site designers. Mets people should have a thread / forum that is NOT VISIBLE to us cancer-lite people. They should have to produce a stage 4 diagnosis to a mod or some other regulating body and then be ushered to a private room . That would ensure that only stage 4 people can post there. That would ensure that they would never be bothered by lesser thans like you and me. When new stage 4 people join BCO they can be offered, by private message, the opportunity to produce documents and be taken right to that special OUT OF SIGHT room. Facebook manages to have private groups that you have to be invited into and approved by admins to join. These groups are NOT visible to the public. The same should stinking well be in effect here. A thread / forum that you are invited into and no one else sees. THAT is what mets people should have. THAT is how it should be structured.
Artista, I am having a hard time articulating exactly what about this has gotten under my skin. I think ...and I could be wrong, always can be wrong .... that you and perhaps many, many others think that leaving the stage 4s alone, bowing out of their special place, is the same as showing honour and respect for their achievement. Disease is not an achievement. Disease is not a contribution to the betterment of the world. There are no merit badges for having a worse disease than someone else. Disease is not a competition with winners and losers. There are just LOSERS!! It's a bloody catastrophe. If stage 4 people feel they want to be alone with their disease, don't want us commoners butting in, then what are they doing in a group of 225,000 members asking to not be bothered by the majority of them? I am suspicious of people who go to the beach then complain about the sand.
Yes. There should be a separate and private place for mets people. The words STAGE 4 ONLY are NOT separate and private enough. The structure and procedure to make such a place and the means to prove your way into it could be built. Mets people need to ask the Powers That Be why that isn't happening. And then they can go over there, where we do not see their posts, and we stay over here. Out of sight, out of mind.
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Well present your case to the mods. I have no idea how you can prove you're stage 4. Few will offer their real names and health info from their chart just to post. I'd rather find a fb stage 4 page where they basically take you at your word. I'm a member of a forum for ALS, motor neuron disease. My dad has the rare form 1 sided called Mills Syndrome after ruling out PLS. They have a specific area for us who aren't sure we have the disease and a for caregivers and fam members. People can lie that they have the disease so they can post like they have it. No one asks ID and medical record proof of diagnosis. It's an honor system.
Sometimes we need to say it is what it is about something or a service that has too many people that there's no way to please them all. You can write to the mods and if you aren't seeing what you like, there's a choice. They aleady tried the how to make this board better by asking us our opinions awhile back. It was all over the place. You can't please everyone is what they found. You're bound to piss a number of people off no matter what you do. I've seen that with all the boards I'm on health related or not. That's why some people break away and start their own board where some people follow and others like me now have 2 boards for the same stuff. Personally I don't want the stage 4 forum invisible to us. I read up on the various mets and medications, people's experiences. Like you I like learning and making that forum invisible which is very educational is not a good thing imo. There are people I follow there, some are pm friends. Why should we lose that? Not everyone posts in Mel's thread for their own reasons. So those other folks would be gone from us. That's really creating a division. I just read but don't post. Just like on the ALS forum. I'd love to but I stay in my lane per the mods on that board. I'm grateful I can read everything for I have learned a lot that's helping me with my dad.
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"If stage 4 people feel they want to be alone with their disease, don't want us commoners butting in, then what are they doing in a group of 225,000 members asking to not be bothered by the majority of them? "
I don't get this. There are some who found this board has a stage 4 only forum. Some love that. They aren't alone. They have each other in the same boat, which is not exactly like us. They can choose to remain there. Last I looked this is the only thorough very active board on bc. There is no bc stage 4 only board out there that is thorough or active, if at all. The mods are doing the best they can imo to accomodate all. There are some boards that it's tough shit. They do 0.
"The structure and procedure to make such a place and the means to prove your way into it could be built." We don't know what software this is. How do you know it's that simple? And the costs. Awhile back we learned how expensive it is to make big changes. Who wants to pay for that?
Maybe this was before your time but the mods had set up video conferences where 2 to 5 people showed up making their suggestions and they responded, in addition to that mondo thread.
Oh and I was surprised to see how many people don't use fb. I do but no way do I post my real name or photo. With the data breeches and hacking that happens, actually seems safe and smart.
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Prior to my stage 4 diagnosis, I would sometimes read the stage 4 threads but I wouldn't post there. I think I gained some insight reading there. It was a privilege to be able to see how they coped with the difficulties related to having a stage 4 diagnosis. It was eye-opening and heartbreaking. If lower stages are not to read anything there in addition to not posting there then it probably should be private.
Runor, like so many others here I really like reading your posts. Please don't let this chase you away.
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