A place to talk death and dying issues
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Just this one time for me to go into detail to show how Stephanie "ran her off by being mean"(Bonnie's words), because I want to and choose to defend her if I could. Probably all Stephanie's posts regarding this matter have been deleted by her upon Bonnie's requests. However, I happened to remember this one. In her this post Stephanie was addressing several posts by several people she read, including one Bonnie wrote (in which Bonnie mentioned her pains and then said she should not complain because there are people suffering from pains more serious than hers). Stephanie wrote, Bon if you stop being truthful then I will stop too. Anyone in her right mind would read this sentence as that Stephanie was encouraging Bon to express her true experience without worrying. Yet Bon immediately charged Stephanie for saying that Bon was not being truthful. Stephany then explained that she did not question Bon's truthfulness. Bon insisted that she did and did it not one time but several times. The ground of the accusation? According to Bonnie, Stephanie used the word truth 4 or 5 times in several posts related to Bon! I was astonished by the gap between Stephanie's writing and Bon's reading. I let it go because I could not believe that Bon was seriously charging Stephanie. I thought this kind of misunderstanding should not last long due to the absolute and impossible absurdity. I thought this might be just a case that someone seriously lacked the sense of humor and the ability to understand a certain rhetoric. Now I understand that this is someone too much used to the military style of perceiving and reacting - if you sense you were hit, hit back immediately and hit hard! Never admit that you sensed wrong! Never doubt yourself! Never mind the enemy you chose is a fellow stage IV patient who is in her last stage of life, and never mind she actually wrote supportive posts for you but you insisted on "reading between lines" (Bonnie's own words) and you have been proud of it. Stephanie probably will never say anything about it any more. I trust her one reason be her time is more precious than this subject. So I use mine. I love to continue to listen to Rosevalley, Brenda, M360, Blondie, AND Stephanie talking about the poetry they read, the pain they have, and the love they hold for all.
(Edited for typo)
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Sorry for copying your words, Xavo, I too, love to be able to continue to listen to Rosevalley, Brenda, M360, Blondie, AND Stephanie talking about the poetry they read, the pain they have, and the love they hold for all. As to other posts I find hard to digest, I just block the writer.
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I don't often visit this thread, but when I do I'm continually struck by the compassion and support in Stephanie's, Rosevalley's, Brendatrue's, and so many other members' posts. This is the place where those in their final chapter of life, and those who are visiting for other reasons, should find a safe and steady harbor.
I have not seen the deleted posts nor can I bear witness to what transpired. That said, it is highly distressing to me that Stephanie found it necessary to retreat, especially after continually giving of herself so freely.
So many of us are dealing with pain, anxiety, and nearly unthinkable physical and emotional issues. I've often said that those with mbc suffer from TSD instead of PTSD, as the "post" part of the trauma is never over. In such situations, it is all too possible to misconstrue intent, or to say something that under far better circumstances we'd never otherwise have dreamed of verbalizing.
My heart is heavy for Stephanie and for those who have been hurt thought words, as well as for all who are suffering for manifold reasons.
To those who - despite the most adverse of circumstances - strive to make the path smoother for others, your efforts and courage are beyond compare.
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I add my voice to Bestbird's and others. I am saddened to return after being away for Easter celebration to see this trouble. I agree with others here that there is space for all of us here, but there is not one square inch of space here for verbal and emotional abuse.
Love must win. It is up to each one of us to make sure lovingkindness prevails in our sphere of influence, to ensure that light overcomes darkness everywhere our flashlight beams can reach.
I believe that is what is happening here today. What I have witnessed here is a lot of beautiful hearts rallying around a wound with balm, speaking grace into the pain. This is why I love this community, and why I keep coming back year after year.
Also: I hope the moderators will help us protect the safety and sanctity of this space in the future. We should always request their help when we see someone being targeted, hurt, or verbally abused on the boards. I hope some of you have contacted them already.
Stephanie would rather remain silent than risk hurting another living being-- this much she made very clear to us all. I have contacted her privately to voice my appreciation and admiration for her tender heart and her spirit of generosity with her long, valuable experience. I told her I hope she will venture back here and see that she will be treated with the respect and dignity she deserves. She is truly one of the wise ones.
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I could not agree more with the past 2 posts by bestbird and lulu bee. I came to this thread primarily to read Stephanie's heartfelt posts. Stephanie has understandably stepped back from posting and all of us that enjoyed her posts have lost something. It saddens me tremendously for all of us realizing the thread is not necessarily the safe harbor I thought it was intended to be.
Mary Anne
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Many of us have worked hard to create and maintain a safe haven for those who wish to explore the very sensitive and meaningful issues that often arise around the topic of dying and death. Although I deeply understand the concerns about trust and safety given recent events, I hope that those of us who are committed to supporting each other by posting respectfully, thoughtfully, and compassionately will continue to gather here and share. I have no doubt that the moderators are invested in supporting us in doing so.
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I am also afraid Rose has left
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Kjones,
Rose posted here 2days ago , she did not seem she is leaving the thread. But she did hope for it to continue for the same purpose it was created for a safe haven for all. Love , kindness and compassion is what this was created for. I hope it stays that way.
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Greetings to Stephanie, Rosevalley, Brenda, Blondie, M360, and all who share their living experience here, and to all who listen to them here! Hope you all have a comfortable, peaceful, and beautiful spring day today!
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I am sad from the turn of events and it makes my heart feel appreciation and gratitude to see the BCO community support those on the D&D thread. We all travel this path or help someone we love and care about who is. It's enormously helpful to have others to talk to when you are struggling.. spiritually, physically and emotionally. Since one never gets to know before hand what to expect, the death and dying path is foreign and unfamiliar territory even if you traveled once witha loved one... another's path might be different. Sharing openly and bravely has helped me enormously. I think about things I would not have. I get to see another's perspective and widen my world as a result. Thank you for sharing and being brave to expose your heart and soul to others. I am humbled.
It is terribly difficult to be a care giver. I celebrate those souls who stand up and give daily. Yesterday I spoke to my brother who works full time and cares for my Mother with dementia full time. It was a bad morning as my Mother forgets she has eaten and grazes continuously. She ate the entire evening meal meant for 3 adults. My brother was besides himself, as his efforts to make a meal, cook, prepare - meant he only had to shop and do it again. He knows she can eat, forget she has eaten and be hungry within an hour. But he chases blood sugars and feels like a prison guard instead of a son. We talked about strategies... a frig with a lock seems most helpful. Mostly I listened and offered compassion and support. I visited last year in Jan and August and saw first hand how difficult her behavior was to control. You can't! She is angry and obstinate and smokes like a stove. She would get thrown out of most care facilities. The gracious, articulate artist Mother I had is gone. She should be in a care facility and has zero appreciation for my brother's efforts. He buys all the food and prepares it.. she eats. It's a thankless job. He has to shop every other day. She won't leave anything alone. I feel like we are treading this path to the ledge of having to force her into a home. She won't bathe, won't take care of herself, doesn't care about her blood sugars and has burned holes in furniture and clothing snoozing with lit cigarettes. It's terrifying. Her attitude is it's my money and my home and my body leave me alone. But her mind is gone and when is it gone enough to justify turning the reins over? I could tell my brother was reaching the end of his ropes. He is emotionally and physically spent. It isn't fair to have to live like that daily. I worry the stress to his health will ruin his health too.
I guess between my own health and worrying about the health of my Mom, brother and running a household here (My DD2 has a terrible cough and cold, DD3 broke her glasses and has an eye infection) it's hard. It felt unduly harsh and miserable to see the conflict here. I come to this thread for some sanity. - reflection, poetry sharing and calm reading from others willing to share their observations and journey. Stephanie is dying and lives alone. She graciously has offered support and love through out the threads to many others. Taking time, posting articles, photos and heartfelt comments and observations on living and being in hospice with living with breast cancer for 25 years. I appreciated and looked forward to reading her observations. They help me. There are not too many of us with peritoneal mets and ascites and drains. I can count the members with one hand.. sharing the journey helps me cope. There is no one else to talk to about this path except each other. Having ascites and trying to stay alive is HARD!! I know I live it. To have her feel run off and unwelcome just wiped me out. (((hugs))) Stephanie. I would leave BCO to protect my sense of balance and serenity at the end of my life. Toxic conflict doesn't help one die well. Spend your energies wisely. I told her so, trying to offer support for her emotional and spiritual wellbeing. Still I will miss her posts and presence.
Special hugs and lovingkindness to those struggling on hospice- Blondie, Stephanie, Nancy, Hope, M360 and anyone else I have forgotten. Love also to Bon in hopes she will forgive and let it be.
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love ya rosevalley!
Mary Anne
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Love you, Rosevalley, for your profound kindness! Yes, I should especially say, greetings to you, too, Bonnie!
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Rosevalley: Love you, and love your fighting spirit even more! Keep fighting the nasty cancer. Hope Faslodex brings you more comfort.
Stephanie, please come back to BCO, we miss you! Hope you are pain free and comfortable.
Brendatrue, thank you for your postings, always enjoy them.
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Stepping in here to ask all to please move on from here. Thank you.
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The thread has been hijacked and changed; we are allowed to grieve and experience our loss. Asking everyone to pretend they didn't notice others words and behaviors is being unrealistic and unfair to everyone left. We notice Stephanie's absence and silence. We experienced the comments. If moving on means acting like we don't care and didn't notice, then count me out. I care. Actions I had no part of now effect me.
If you want to be left alone Bon. Don't post about it. You respond every time so you clearly wish to keep it going and get something out of posting your victim perspective. Everything in tone and content here has been tanked you want us to just walk away like we didn't notice. Really? The mods want that too? I am taking a week break. It's a gorgeous spring day and I'm alive and going to go bathe in the sunshine.
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The rest of us that gain so much insight from our dearest Rosevalley, Stephanie and others are made to suffer because of bad behavior from one person? I read this thread twice daily. It is part of my daily prayers and thoughts .
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Indeed the thread has been changed, and certainly people are allowed to grieve. No question. Also, we do not encourage a pretense.
However, we do feel that it is a good time to disengage from the negativity, ignore igniting comments, and try to bring the thread back to it's original intent. It has been a sanctuary for so many, and we are committed to bringing back it's supportive purpose.
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I hate this. I was only diagnosed with mets recently & can't handle much in the way of daily activities. Just making priorities & doing what I can. This thread has comforted and sustained me mentally from the beginning until recently. How one person can so negatively affect and hurt so many just adds to our struggles. Very unfair but I guess life is unfair. I won't participate anymore in a place that allows this to happen. God bless you all. I wish you nothing but the best
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Rosevalley, i am sorry for your brother's heartache and dilema and also sorry for your mother's state. It is so hard to see people we love lose something so vital.
Wonderful post as always , i always look forward to reading them as they are full of kindness and utterly genuine.
I don't know what exactly happened on this thread as i have not read them , i sensed something had happened from deleted posts. I am just sorry as this is supposed to be thread for people to share their experience and find love and comfort.
So i join my wishes of comfort to Blondi, M360, Stephanie, Nancy, Hope and Bon . I hope they all find love, comfort and pain free days. Loads of love to all , i hold all of you close to my heart and in awarm embrace.
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I hate this as well. It appears others feel similar to me. While Stephanie was targeted we have all lost out. I am switching over to inspire where I have not seen this sort of behavior tolerated. Amazing that one person can cause so much havoc. Wish you all the best.
Mary Anne
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I am saddened as well. I am not Stage IV so don't generally post on this thread but felt the need to do so as this thread gives me great comfort as I make my way through this whole BC process. The women who post their thoughts are courageous and inspiring. The whole site is wonderful and the moderators do an excellent job, but... I feelthe same moderators failed this thread. I hope it can continue and I send my best wishes to Rosevalley and Stephanie (Longtermsurvivor) and the others, too many to mention. May you all have many happy pain free days.
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Not stage IV either but this thread helps keep things in perspective. Sorry to see some folks go. Hope they'll be back. Much love to you all.
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I feed the need to chime in, as I'm having an especially difficult time with my health. Now is the time that I need this thread and all the love, support, knowledge, and kindness.
I just returned from a week trip to see my father and my extended family. I was forced to take a 2 week chemo break, as my body is so beat down and angry. I opted to take advantage of the free time and send time with those who sooth my soul. The trip was tough but so very necessary. I brought my DD as I felt it important for her to know and spend time with my side of the family. I fear once I am gone she will lose the connection with them.
I am very sad to lose Stephanie, and hope it's only temporary
. I admire how she gracefully handled the conflict, but wish she hadn't decided to leave. Selfishly, I could use some of her kindness at the moment.Peace and love to all.
Noni
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I also wish to ask pardon for the intrusion. I am a long time silent reader of this thread, and am devastated at what has happened here.
Please accept a hug and my genuine respect. You ladies demonstrate grace and strength, Illuminiating the path for many, perhaps without realizing how many you affect in a most positive way.
Best wishes to Stephanie, Brenda, Rosevalley, and all here who have contributed to honest, soulful, truthful, beautiful discussions on this very difficult subject matter.
Peace and love to you all. Hoping for some healing here so that you can continue as you were.
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And another long time regular reader. Lots of us always read every day and have received helpful ideas and startling thoughts & provocative questions we need to ask ourselves & life affirming assistance in the middle of this horrible journey. Thank you to all who have posted over the years. We empathize with everything that you all are going through & feel like we know you personally and are following your brightly burning beacons on this journey.
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Hope it can cheer everyone up! Comfort and peace to all!
And Bonnie, thank you!
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I admit that I am guilty for not asking permission first to copy Jackie/IllinoisLady's posting from another thread, but it is just lovely to read it here:
I remember the morning that I first asked the meaning of the
word "love. . . ."
Miss Sullivan put her arm gently round me and spelled into
my hand, "I love Helen."
"What is love?" I asked. . . .
"Love is something like the clouds that were in the sky before
the sun came out," she replied. . . . "You cannot touch the clouds,
you know; but you feel the rain and know how glad the flowers
and the thirsty earth are to have it after a hot day. You cannot
touch love either; but you feel the sweetness that it pours into
everything. Without love you would not be happy or want to play."
The beautiful truth burst upon my mind--I felt that these were
invisible lines stretched between my spirit and the spirits of others.Love to all sisters who posted here before, please let's continue the LOVE here.
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I apologize for posting here, but felt moved to say how much this thread means to me. I treasure each and every one here and their wisdom, honesty, and humaneness. I am holding each of you in light and positivity. Thank you.
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Stephanie is weak and having a hard time. I hope that lovely heart felt post assures her she is safe expending what little energy isn't drained off from the ascites and cancer eating her alive to come back here. I feel so badly anyone living alone and suffering from breast cancer wouldn't feel loved here because I very much hope and pray for this to be a place of refuge and compassion. If we can offer that to each other, then we have in a great way taken some of the sting out of this awful cancer.
Thank you Bon. Thank you to everyone who have shown community and love. I had no idea how many read here and sometimes I thought our private pain and saga (the draining, puking details of the struggle) was just for we few damned to tread this path. I was wrong; we suffer together... we know someone who suffers and want to help. We suffer and we learn from each other's sharing. Our prayers for relief and compassion make the journey easier to bear. I care so much for all of you and hope with all my being your suffering is minimal and your heart full of love.
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Rose. Thank you for bringing us the news about Stephanie. I worried about her because several postings ago, she mentioned she was not feeling well and slept a lot. She rarely mentioned her physical challenge in the posts. Hope she will feel the love we all send towards her
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