Entering and Exiting at the Stage IV Forum

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Longtermsurvivor
Longtermsurvivor Member Posts: 1,438
edited September 2016 in Stage IV/Metastatic Breast Cancer ONLY

Time After Time – Vázquez Sounds

https://www.youtube.com/watch?v=SmSH9vwZyb4

xxx

Deepest thanks to all who've welcomed me to the Stage IV Forum.

Three weeks ago, I joined to meet others dealing with ascites and to participate in the D&D topic.

While my hopes have been well met, I'm still puzzling my way around.

Maybe other members can help orient me.

I want to know who you are, when you entered, what you're dealing with and if you've exited the forum.

Your posts on a topic are my first clues about you, many have informative signature lines and clicking on your avatar might reveal your fuller picture. If you've many posts, then searching by member name reveals more about you.

Obviously, not everyone wants to be known. There appear to be many more readers (aka listeners/silent members) than writers.

Are there other ways to get to know you?

Your treatment histories tell part of the story, your posts shine a light on your interests...and? How to get a quick orientation to the 165,864 bc.org members? Of the fewer number in the Stage IV forum?

Then there's exiting this forum, my impetus for writing this morning.

I've been searching the archives for reports on ascites, liver mets, etc. and notice that large numbers of us just disappear.

In other forums it's possible to assume members have graduated from treatment, but at the Stage IV forum, I guess you've died and haven't left word of your death through a survivor or forum friends. I try to puzzle it out working backwards from last appearance, last post, last word, last contact.

Are there official or unofficial ways that we keep in touch with one another, especially of those who disappear? Is there a separate commemorative forum honoring those who've died?

Supporting and caring for one another, we weave bonds to get us through. Even if death breaks the bonds of reading and writing, it will never break our bonds of caring and carrying one another in our hearts.

Thanks in advance for helping me with my puzzle.

love always, Stephanie

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited January 2016

    Hi longtermsurvivor.

    I am unsure if there is a specific answer to your question. I believe some people need bco for just a short time and then find other supports. My sense is we let each other find are own level of participation. If you are ever really moved by someone or really worried you can private message them. Good luck in finding what you need.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Longterm, tho some women leave the forum for whatever personal reasons, those who leave due to passing from this disease are commemorated on the Angels thread. I have provided a link to that thread at the end of this post. A member of bc.org, Celia, keeps the list up to date, and any time one of us is made aware of another member's passing, we get that information to her.

    There is also a central address thread. You can put a bit of personal info on there as well as a person who can be contacted about you in case there is concern as to why you are no longer posting.

    Angels thread: https://community.breastcancer.org/forum/56/topics/694012?page=30

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    As for getting to know members, it's sort of like moving into a community and getting to know your neighbors a little at a time. I prefer to keep mostly to the stage iv forum as I find the most support and understanding here. But I'll occasionally pop in other areas ifthey pique my interest and I feel I have something worthwhile to contribute.

    Just as you have different things in common with different neighbors and friends, you will find differences here as well. You will bond over different things with different members and some members you may completely disagree with. Just go in directions where you feel the most support and gain the most insight and tailor it to your own needs. Click on "add to my favorites" on threads you want to follow so you're updated on topics that are most helpful to you and interest you.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Yay!

    Thank you so much, Divine Mrs M!

    This is exactly what I was looking and hoping for!

    Of course anyone is free to come and go whenever and for whatever reason.

    Yet I'm happy to know that the community carries members in our hearts and memories.

    I'll look at the angels thread and will look for the central address thread too.

    Thanks too for the neighbors analogy...works for me and I look forward to gradually growing into the communities where I'm most at home.

    What a blessing, Stephanie

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    https://community.breastcancer.org/forum/8/topics/709156?page=3

    This is the link to the info on the Central address thread.

    And yes, it is a comfort to know we do care about each other. God bless.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Thanks, Divine Mrs. M.,

    I was an active member of acor.org's Club Mets around the millennium and at bcmets.org for the past 13 years. I'll see if I can make the three month, 40 post minimum to be added to bc.org's central address thread.

    It was good, though sobering, to see the names of so many friends at the angels thread.

    We are so blessed to have one another and yet often so grieved to realize the extent of our losses. That's one of the ill-effects of long term survival.

    warmest healing wishes for all, Stephanie

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited January 2016

    Stephanie,

    I'm one of those who come and go in spurts. Sometimes I become emotionally worn out and have to take a break. Something always seems to bring me back. If I know I'm going to be gone for a while, I try to let someone know. We all worry when someone disappears from the threads.

    Also I believe it is through the central address book that we can share our personal contact info with someone. That person can then make contact with our shared family member to find out what we're up to and let everyone else know.

    For quite a while there was a "five questions" thread for stage IV gals. Someone would be chosen and asked questions. If they chose to participate they would answer, then it was their job to ask another metster questions. It was a fun way to get to know a little about each other. Sadly that thread has fizzled out, but if you search "five questions" it will come up. We have said good bye to many of our friends who answered the questions but I still enjoy going back and "remembering" those we have known and loved. It might be too difficult for some to go there.

    Hope this isn't TMI.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Thanks for the welcome and tip, GatorGal!

    I totally get the worn out with cancer and dying thing. Suffering and death of loved ones, including those I know only online, has led to great grief during my years with advanced breast cancer.

    I found the five questions thread here and will bookmark it to read later:

    https://community.breastcancer.org/forum/8/topics/793537?page=1

    Recognize many names and glad to see some participants are still posting here.

    For years I've read Coolbreeze's blog (http://www.butdoctorihatepink.com) and am glad to see she was an active participant here and started the five questions.

    Blessings for all, Stephanie

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2016

    thank you for the tip about the five questions, gator,and thank you for the link Stephanie. I did not know this thread existed. It's very interesting and does paint a bigger picture of everyone, besides all that is cancer. It's nice to read. I'll be reading more, as well.

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  • susan3
    susan3 Member Posts: 3,728
    edited January 2016

    in some threads the gals keep,close watch of each other and have each other's contact info. It's nice when a thread gets that close :)

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited January 2016

    some of us even play words with friends with each other ... LOL!

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    So, to continue The Divine Mrs. M's analogy...I've moved into this new community and am meeting neighbors one-to-one and at various forums and topics. I've visited some outside of this forum, though consider this my home turf, especially the D&D topic.

    Thinking about other places I'd like to visit:

    Is there still a bc.org chat room?

    Is there a book group that focuses on cancer and dying literature?

    I've referred to D&D as a Death Cafe for Mortals. (http://deathcafe.com)...is there any similar place else I shouldn't miss?

    Is there an area for cancer and research geeks like me? Lots of cancer and research news flows through my life and I share it at the cancer news and crossing disease communities at https://www.smartpatients.com/ Are others at bc.org interested & already connecting?

    It seems like I've moved into a super exclusive neighborhood at Stage IV and Mets Forum. bc.org members with earlier stage disease can visit and even post at https://community.breastcancer.org/forum/8/topics/783594?page=107#idx_3181, but are discouraged from offering advice in other topics in this forum.

    Kinda reminds me of the 'Ring Theory' of kvetching. The first rule is comfort in, dump out. http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

    Is the general rule of thumb that I may visit other forums where I belong, but avoid or limit participation/posts at those I don't belong (like TNBC or brain mets or chemo regimens)?

    If I have experience to share OR concerns in need of help/information/support OR can offer human kindness, then I may?

    Lots of questions, I know.

    Please don't feel you need to answer all or any of them. I'll keep working on finding my way around.

    So grateful for everyone!

    healing regards, Stephanie

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  • Kandy
    Kandy Member Posts: 1,461
    edited January 2016

    GatorGal, I love to play words with friends. Willing to play with anyone.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Stephanie,

    My advice, with respect to navigating through bco, is to just relax! Use common sense when posting, don't swear at or personally attack others whose opinions or POV differs from yours, and you'll be fine.

    Whether on stage IV or other forums, we are a wildly diverse group of people. As in real life, you may feel more comfortable with some than others, may have little or many things in common etc. And, as is sadly true of online life, there are some who misrepresent themselves or have questionable agendas.

    I post in many different threads and forums. Most of the time, I post in threads where I have personal experience or knowledge, even if it's not a stage IV thread. Post respectfully and honestly and you will have a positive experience here. Take care

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited January 2016

    I think I'm more of a reader then a poster. I feel like I have so much to learn yet but little to offer anyone else except support. I usually stick to the bone Mets and Ibrance threads since that is my current situation. I read many other threads and have learned a lot. I have never had a negative experience with anyone, and appreciate all of you!

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited January 2016

    "I have never had a negative experience with anyone, and appreciate all of you!" what I beautiful statement and that is exactly how I feel. Stage IV is a scary thing and with it comes a lot of emotions, I keep that in mind and try and be as sensitive as possible. I try to live by the book "Everything You Need to Know You Learned in Kindergarten" by Robert Fulghum. Treat people the way that you would want to be treated. I feel that what is lacking in our world is respect. Imagine if there was more of that in the world. We will all never agree on everything, how boring would that be, but if we all could just respect each other's differences. Most people come here for support, either in the way of medical information or emotional support, I am very glad to have received both from this stage IV forum.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    LOL! I have, unfortunately, had couple of bad experiences. Most of them have been because I am too happy, too well and quite open about that. I have, generally, been able to shrug those things off as I understand that stage IV does not bring out the best in us all of the time. My favorite was a post (since removed) telling me to place my single, grade 1 bone met up my bum (expressed in much coarser language). I got a good laugh out of that as I tried to visualize how that might be accomplished. Not so funny were a few truly vile pm's (do people really speak to each other like that?) briefly upsetting, but ultimately the senders problem.

    My experience with stage IV is my own and I am always clear about that. I neither hate nor feel loathing toward anyone here (yup, words used about me), but I will not dim my light as my stage IV experience is just as valid as others and takes nothing away from others. (Stepping off the soapbox now😊).

    Good wishes to all

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Longterm, I don't think it's a matter of limiting one's self to only posts where you think you belong. You just naturally gravitate more often to threads that give insight to your particular set of circumstances. If you're posting where someone else thinks you have no business, ha, ha, believe me, someone may just tell you that. I have done it to a few over the years who are not stage iv but insist on trying to pass their experiences off as being able to relate to what we deal with.

    There is a death and dying thread: https://community.breastcancer.org/forum/8/topics/770023?page=95#idx_2825

    Also, a breaking research news thread: https://community.breastcancer.org/forum/73/topics/785923?page=19#idx_561

    I think the chat room still exists but I never use it.

    For the most part, my philosophy on using the forum is similar to MusicLover's. However, once in awhile, tho not often, I can get ticked off about something and will let it be known

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Also, thanks for the link about the ring theory. I've read about it before and bookmarked it for future reference

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  • TNCatMom
    TNCatMom Member Posts: 10
    edited January 2016

    Stephanie, I don't know about others on here, but I'm fairly new at this stage IV thing, and not entirely comfortable with the forum. I was diagnosed with stage 3C triple negative breast cancer in June 2014. I also had widespread ER+ stage 0 DCIS in my other breast. At the time of diagnosis, my PET showed 3 tiny nodules in my lungs that were too small to biopsy. I did 4 DD AC treatments followed by 12 weekly Taxols. Chest CT following treatment showed nodules were gone, leading my oncologist to believe that the lung nodules were cancer. I had a double mastectomy with no reconstruction followed by 28 radiation treatments and 5 boosts. I burned really badly, then developed radiation pneumonitis and I have some scarring and fibrosis on my lung. The PET that showed the lung damage also showed a couple of enlarged lymph nodes that lit up at the base of my windpipe. Biopsy showed cancer, so that officially made me stage IV. Also, the lung nodules were back and larger than they had been initially, but still too small to biopsy. Cancer had spread in my sternum, and possibly to my ribs, and oncologist is assuming lung mets. I did Xeloda for 3 months, and had a couple of millimeters of progression, so I had a new port put in at the beginning of December and am now doing Gemzar. I am doing a 21 day cycle, 2 weeks on, one week off, and will be having my fourth infusion this week.

    I know that stage IV is terminal, but I've really only had 1 drug that hasn't worked, which makes me feel like I am in the earliest stages of stage IV. I'm probably in denial, but I like to hope I might have 10 years, even though I know 5 is more realistic. I like to get on to these forums to get information, but the part of me that is in denial doesn't want it to get too real. That's why I am on here sporadically, and I rarely post. I've always been a person that wants to know what's going to happen before it does, but since I've been living with cancer and all the side effects, I keep thinking there are some things I'm better off not knowing.

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  • Noni
    Noni Member Posts: 327
    edited January 2016

    Hi Stephanie. I have been a BCO member for many years. In the early days I posted to topics that pertained to me, but always lurked on the more advanced stage forums. I've had to leave the board on several occasions when certain deaths hit me hard. I don't think people in our everyday lives understand the depth of virtual grieving.

    When I recently became stage iv I was quite a bit comforted to see many familiar names still actively posting. Fitztwins has been a true inspiration as I've followed her for years. She was actually the first person I thought of when my doctor gave me the news. By following her story I believe it when family and friends tell me this isn't a death sentence. There is still so much more life to live and I am determined to watch my daughter grow.

    Can I ask a bit about you and your history? When were you originally diagnosed and what did you have? What treatments have you received and what would you say has been your biggest struggles and blessings?

    It's very nice to meet you.

    Noni

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Noni...you finally put a description to something I've experienced yet couldn't putinto words, "virtual grieving".

    TNCat, the nice thing about the boards is a person can read and learn and decide for themselves if they want to jump in on a topic. There are times I wish I could hold back, but having always been opinionated, I just blab blab blab away!

    I'd like to add that while I think it's okay to disagree, and much can be learned through spirited exchange, I have not and never would attack someone personally and in such a vulgar way that exbrnxgrl was. Totally uncalled for. I also have never sent any kind of nasty private messages to anyone on the forum. I put my feelings all out here on the publicly viewed threads for everyone to see.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2016

    Hi Longterm, I've been around this forum for quite a few years and have made and lost many friends during that time. I post where I feel I can help with information or just a word of encouragement and that includes all stages.

    The thread to which you referred regarding lower stage women being able to post in the stage IV forum while being denied on other threads in the said forum was started by me. I did this to give lower stage women a place to pose questions regarding their fears and or symptoms that may make them think they may have moved up the ladder. Prior to this thread, there were often interruptions in a thread that was discussing life and death.......the writer being a lower stage communicating her fears but instead of help they were often ignored or told to go somewhere else as this was the stage IV forum. This was causing ill feeling in the community hence that thread.

    Sorry, got a little long winded there but I hope I have explained it well enough.

    Oh! By the way, welcome.

    Love n hugs. Chrissy

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited January 2016

    and Chrissy, your thread has helped countless people through their fears .... I lurk Once in a while and am just amazed at your knowledge. Thank you for giving so much of your time to help our sisters who are afraid, confused, or just need questions answered. It is a wonderful service you provide

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  • mirryp
    mirryp Member Posts: 41
    edited January 2016

    I often read, but rarely post. I have widespread mets, lung and bone, but am living almost normally coming up to my 5 year cancerversary. I hesitate to add to most threads because my experience so far is different than most. I most often check in when I am awaiting scan results as I find myself trying to figure out what might be next if I receive bad news. I appreciate those less shy posters who are so helpful with all of their information and sharing of experiences. Right now I am debating an early retirement and applying for disability so I've been scouring those types of posts. I worry that karma will get me and if I claim disability that I will get bad news at the next results appointment. I'm just so tired, as much mentally as physically.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Yes, Crissy, the thread you started is a great way for those not stage iv to get questions answered.

    There are also occasional exceptions to others not stage iv posting on certain stage iv threads. Most often, those women are respectful and identify themselves as not being stage iv prior to their comments.

    Yes, this can be described as an "exclusive neighborhood" where no one wants to move

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    mirryp,

    Welcome! I too have had a less common stage IV experience, but I think it's important for all the "flavors" of stage IV to have a voice. Good luck with your retirement decision. I'm not at that point yet, but when I do get there, I'll just go for it. Take care

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Hi Chrissy,

    I just looked at a couple pages of the "ask questions about stage IV & mets here" topic and see that it's a wonderful, informative, supportive meeting place, rather than the locked gate gathering spot I'd imagined. I've also learned that many with lower stage disease are listeners/silent readers at this forum, so there isn't a wall around our "exclusive" forum. :)

    Thank you for creating and maintaining the questions topic!

    btw, the official way breast cancer is described is by original diagnosis. If there's metastasis, it doesn't change the original stage. So someone who was stage II and develops mets isn't re-diagnosed stage IV, but is stage II with mets.

    See "A cancer's stage does not change":

    http://www.cancer.org/treatment/understandingyourdiagnosis/staging

    It's a little hard to wrap your mind around, but that's how the counters count us.

    gratitude, Stephanie

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Chrissy's thread is wonderful and a comfort to so many.

    Somewhere, on bco, we've had this discussion about staging. Yes, ones original stage, with the mets tag is "official", but most women just say stage IV. It's shorter and easier that way. I was staged as IIB for a very brief period of time (never even got to tx), so I always say stage IV. Thanks for the link


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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Hi Noni,

    Thank you for asking about me - your chatty new neighbor trying to find her way around a neighborhood where no one wants to move (thanks again, Divine Mrs. M.).

    Noni, you asked, "Can I ask a bit about you and your history? When were you originally diagnosed and what did you have? What treatments have you received and what would you say has been your biggest struggles and blessings?"

    And I cringed, because my medical history is lifelong, complex, unique and irreproducible. I have a rare genetic condition that led directly to bilateral breast cancer at age 34, in spite of my perfect cancer prevention lifestyle that I'd maintained for years. I chose to have mastectomies without reconstruction and found local recurrence within months and have been experiencing spread ever since.

    Here's something I wrote about my holistic approach: https://community.breastcancer.org/forum/79/topics/839204

    Noni, now that I'm on hospice, I've given myself permission to stop being stuffed into little medical boxes and narratives. No more tests, scans, intake forms, seeking diagnoses or new treatments. I've even broken away from the pain scale, as pain is a dynamic, participatory, changing experience. I focus on QOL (quality of life) instead of measurement and problem solving. Okay, I do seek ways to improve my QOL and think I always will.

    For many years, I've hesitated to share my story, because I don't like being an inspiration and being asked for advice about how to replicate my results (25 years with breast cancer is a long time and a lot has changed). I didn't even participate in Anne Bestbird's outlier study, because though she's a friend, I couldn't fit into any box. Impossible to give a recipe for a lifetime of exploration.

    My biggest struggle and blessing is the same thing - love.

    I've cared for so many who've suffered and died - my loved ones nearby and those I've known through virtual forums. I joined this forum so I could write to Rosevalley who's in a similar situation to mine (ascites, implanted drain, facing death) and then met Torridon and Elm and others dealing with the same things.

    Grief is the price I pay for love and it's so easy to care about others, as well as myself.

    As always, this is long winded, but it is difficult to condense a lifetime into a little box.

    warmest healing wishes for all, Stephanie

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