A place to talk death and dying issues
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I wish there we could know why people stopped posting. I wish the mods (or someone) could contact them via their private email and ask. If they have died, I would think a family member might have access to their email and could answer them. If the person has simply left, it would be great to know they're OK, but just staying away.
I don't know - it's just so hard wondering when we haven't heard from someone in so long. I realize there are privacy issues and all. I just don't know the solution. I wish, too, there was a way we could send support to the family - if there is one. I wonder if moth's family knows how loved she was here. And shetland pony, and bevjen, and rabbit, and ...
Carol
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Sunshine, I’d like to know too. It was hard when I first joined BCO, I wondered about so many people and thought everyone was dying. I really appreciate those who tell us they’re taking a BCO break before dropping out for a few weeks. I’ve found myself doing some internet sleuthing for obituaries, which I sometimes feel weird about. Having been on the wondering side of it, my husband has struck instructions to notify a few key threads here, within a day or two of my death.
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sunshine,
Other than tasking one of your family members or friends with informing bco of someone's passing, there aren't any practical solutions. Some members are very careful to maintain anonymity on bco and it's the promise of anonymity that allows them to express themselves freely on this site. Everyone deserves that level of anonymity if they choose.
Illimae,
I too have googledobituaries. It makes me feel somewhat ghoulish but I simply want to know what has happened.
It is so very strange that we have to think and do these things but it's another ugly reality of bc.
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Me too on the obituary trolling but even that’s difficult as we often have little to go on. One of my first experiences with BCO was someone I considered a friend suddenly disappearing. She was communicating, had the flu over Christmas and then… nothing. She had co-morbidities so I imagine that may have been the problem but it was so unsettling. I don’t have a big following on BCO and also no spouse/children but plan to have a friend post when this @$&# disease finally gets me.
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I agree with all of you about the sadness when we miss someone who has not posted. Someone on another thread just asked about Moth so I will answer her... I don't post in this thread often as I am more active in others. I just can't spend too much time here or I get emotional.
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There is a thread from the moderators: In Memoriam of those in the BCO Community. I search it occasionally but it is long... sad
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At one time we had an address book on the stage IV forum. You could list your personal email and/or family member contact in the event that you hadn’t been heard from or perhaps passed. I have no idea why or when it disappeared 🤷🏻.
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Wait--BevJen? When? We were PM friends via this forum. I knew she was investigating other sources of info and treatment, but I am in a state of shock over this news.
Please respond with whatever you know.
Tina
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Tina2 -
If I recall correctly, BevJen stopped treatment in mid July with progression of brain mets. You can check the Liver Mets thread from around July13th.
Here is a link to one of HER obits. She was even more remarkable IRL than here on the boards. She is missed.
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Seeq,
Many thanks for this response. I read Bev's obit, found more and scrolled through all of the July posts in the Liver Mets thread. I am stunned by what feels like her very sudden loss, as well as our losing Shetland and Moth almost simultaneously. As these communicative long-timers pass on, I feel more alone.
Who can I share complaints and fears with now--- and how would I dare, aging outlying survivor that I am?
Tina
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Hello everyone - I too cry silent tears from the losses here but also try to remember the enrichment and joy they brought us. I’m missing PatGMc and don’t know where she went. Everything was so much better on this site before it was revamped and now it is hard to log on. It’s hard to know if we’ve lost poster because of the site issues or if we’ve really lost them. Any word on Pat would be appreciated. She always made me smile.
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Hi everyone, I last posted in April, describing the poor prognosis my onc had given me and my end of life preparations. On May 11, at my onc appt, we got the results of my genomic testing from Canexia. (I've never had a good biopsy as mets were all to bone. Then, like an answer to my prayers for a lesion to soft tissue, even an organ, last spring I grew a plum-sized lesion in muscle on my upper back that they were able to pop out like a cyst and get a great sample.) Turns out I am definitely HER2- (I was considered borderline when original breast lump was tested and was treated with HER2+ drugs), and I got genetic info that is very hopeful.
I have the PIK3CA gene mutation, which, along with my HER2- status, makes me a good candidate fora targeted chemo called PIQRAY. It is not traditional cytotoxic chemo, which I no longer will accept. It's a daily oral med, and I'm on my third month. I'm not having any problems with blood sugar, which is a common side effect. My side effects are very tolerable and I had a reduction in bone pain within the first month.
I also have a Tumor Mutational Burden score of 29, which makes me a great candidate for Immune Therapy. The TMB threshold is 10, so I qualify, and I will use Keytruda eventually as a treatment. Keytruda blocks PDL1 (which makes cancer cells "invisible" to my immune system). The side effects are few and rare, and it works slowly, but it can "teach" my immune system to kill my cancer cells. And it's fully covered by Medicare. It's an injection that I'll get every 3 weeks when Piqray stops working for me.
I've at least bought myself more months with the PIQRAY (average months without progression = 8). Hoping we can eventually get the Keytruda on board so my own body can mount a defense. I still manage pain in my skeleton, but hope is a wonderful analgesic.
I'm setting to one side the activities of 'getting my affairs in order' for now, so I have resumed traveling and having fun. I've taken each kid on a short mom+child trip to the destination of their choice, and my wife and I are going to Mexico in November and Vietnam in December. It's wonderful to feel free from the pain and malaise and nausea I was living with last winter/spring.0 -
Pearl-girl, So happy to hear you finally got some long awaited answers it seems! I hope Piqray continues to treat you well and then on to Keytruda. By your post you sound like you have a new pep in your step,that’s wonderful! Enjoy your quality time with your family. Best wishes
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I know that many people here do not know Bigbhome (Claudia), but some of you have been in these boards long enough to remember her. A few years ago she and her husband sold their house in Florida and have been living their dream, traveling across the country with their horses, staying in campgrounds along the way. They bought some land to settle down in Arizona. Her health started to go downhill two weeks ago and she is not expected to live beyond the end of the week. She has been a good friend to me for 7 years. She will be missed.
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Lynne, thank you for letting us know about Claudia. I do remember her and recall her starting her big new adventure. My heart hurts for her and her husband. I wish you peace Claudia. My thoughts and prayers are with you.
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pearl-girl: Thanks for posting. It lifted my spirits So glad you can travel, sounds wonderful.
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Pearl-girl- I am thrilled to hear this! There are many new drugs in the pipeline that may be ready soon-so finding one that keeps you doing well until the next great new one comes along is fabulous news!
Lynn- I do remember Claudia and her horses! this is very sad news- i am very glad she got to live her dream for awhile before she got so sick. I am so sorry your dear friend is suffering right now and send you many big hugs.
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I didn't know her for long but Moth was one of the few people I talked to outside of this site. Her daughter has been trying to go around and post online to let everyone know what happened, but she said Moth/Margaret had a huge online presence so I think her family is aware of how many people loved her. If you didn't see it yet they have a site set up if anybody wants to leave messages, and it also has a lovely slideshow of photos: https://www.forevermissed.com/margaret-kinga-young/about
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I just wanted to let you know that Bigbhome (Claudia) passed away about an hour ago. Her pain and suffering are over now. I wish her family and friends peace and comfort.
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Lynne-Thank you for letting us know. May Claudia rest in peace, or maybe riding one of her beloved horses free from pain. My condolences to you on the loss of a dear friend.
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Cancer sucks! RIP, dear Claudia.
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Thank you for letting us know Lynne. I’m sorry, as I know you grew close. Rest well Claudia.
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Thank you 50sGirl- it is so painful to hear of this. I am glad she is free of pain, so sorry for her family and loved ones.
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50sgirl, I’m so sorry to hear the news of Bigbhome’s passing. She had a beautiful soul. One of her last posts was thanking us members for our kindness and compassion. I was just re-reading it, it was earlier in this thread, and moth was the first to reply to her. I am so sad that they are both gone now. May Claudia and Margaret both rest in peace.
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I am so saddened to hear about the loss of these lovely ladies. They will be missed. It is comforting to read the notes of all who care so much here.
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My husband, who has had mesothelioma for nearly five years now, has decided he wants to pursue the End of Life Option, and has video appointments scheduled with doctors so they can meet the legal requirements in order to prescribe the compound of meds. I respect his decision, and will be with him whatever he ultimately decides, but this is very hard emotionally. I think a lot about my own end of my life since I have MBC, but it's just so much harder when it's someone I love so much. I'm grateful that this option exists, and that we can be allowed to die with dignity. Still hard though.
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sf-cakes - I am so sorry. Words are not enough. I admire you for having the strength to support your husband's decision, as tremendously difficult as it is. Gentle hugs.
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I am sorry you have both been struggling with health issues. I've wondered how DH might accept it, if I get to that point, since he isn't facing a terminal illness.
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SFCakes - I am so sorry that you and your husband are both dealing with cancer...and stage IV. I do support his decision, although I understand how challenging it would be for me if it were my husband. I know two women who chose this in 2022. One was breast cancer and one was a kidney cancer. I am sending you love and prayers and so appreciate the unconditional love that is required of you.
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SFCakes- This is heart breaking, I understand though. I hope it is peaceful and serene and you have lots of wonderful memories to fall back on.
Hugs
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