A place to talk death and dying issues
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I so admire you all for sharing your thoughts and experience. I’m almost 3 yrs out with just bone mets. I had a hospitalization recently.( 12 hours in an ER with Covid 19 patients has changed me) I have been reading your stories and learning or relearning things I should apply to myself. There is no right way to do this but you are helping us all. I am sad you are going through this and frightened as my time approaches. So many of your names remind me of all the good things that come from this site through your words. Bless you all with peace and relief from your pain. Thank you. Maire0
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I'm feeling better this evening, at least existentially. My MO e-mailed me this morning to ask how I was feeling then called me when he figured out I am having existential trouble.
We talked for nearly an hour. He has encouraged me to do the things that are important to me and disregard the rest. What's important to me may not be important to you. And vice-versa.
So if my priorities are to run my manuscript meeting on Thursdays that's what I should do. If you want to go and sit in the sunshine (should there be some) then that's what you should do. He also reinforced that there is no right or wrong answer.
It is his job and the palliative care service's job to make sure that I can do those things. From that point of view it was an odd discussion. I get the feeling that they are struggling with this too. Normally if one of their patients has a lot of symptoms or is having trouble they can put them in the hospital or a hospice or something and try to get it straightened out. Except that right now they can't. No visitors allowed at the hospital or the hospices. And they can't even SEE their patients in person. Must be very disconcerting for them.
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Maureen, do you get the sleepies from the fentanyl and dilaudid? I'm guessing not because you're catching breakthrough pain.
I feel enormously lucky not to be in pain. The sleepies are a bit annoying but I can live with them. Or rather I'll have to live with them, LOL.
Pam
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Wow, Pam. Your MO sounds wonderful. Thank you for being so open with us and sharing your thoughts.
Tina
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Yes, he's been great. My colleagues have been great too. Right now it's a 3-day weekend but I've had some visitors (6 ft social distancing!!).
I feel that I'm getting weaker. But looking back on everything now I realize that I haven't had a working treatment in more than six months. Which means that the cancer is winning, LOL. I have trouble getting out of bed in the morning and getting going. But once I have my morning nap I'm pretty alert.
Meanwhile we've been informed there are two more Covid-19 patients quarantining in our building, LOL.
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Pam- I’m glad you are having “good” days and visits from friends (at a distance). Hoping the sun is shining for you today!
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I am sad to repor that I saw Pam’s obituary in the Boston newspaper. She passed away on April 29. Her mother and husband were with her. Pam was a treasured contributor to these threads. She shared so much knowledge and support to many of us who needed it. She will be missed. May she Rest In Peace.
Hugs and prayers from, Lynne
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Oh, no! This is terrible news. She was so resilient I can't believe she's gone. So smart and generous, with a fine sense of humor.
Words fail.
Thank you for letting us know, 50s girl.
Tina
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RIP Pam, sad news.
Thank you for advising Lynne.
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Thank you 50sgirl. What I will remember is that Pam never lost her sense of humor and she lived her life ( I am thinking about all her travels).
She will be greatly missed on these threads. Pam (pajim) lived 7 years with metastatic breast cancer. She is my aspiration.
50sgirl: And how are you? Are you living your life?
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So sad to read this. Even though we knew it was coming it doesn’t get any easier. May she Rest In Peace
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I looked up her obit - what a full life! And her posts here were everything she was in the 'real world' too. Two lovely and strong ladies gone, just like that. Pajim made a few comments when I first joined that helped put things in perspective. I know she was struggling the last few months, but unless she made reference to a medical problem in particular, you would have never known. She will be missed.
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I'm grateful that Pam got to die the way she wanted to. It sounds like she was still active professionally until the end and was able to be with her dear ones at home instead of isolated at an institution during this Covid crisis. Rest in peace Pam and Valerie (Gumdoctor).
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This is a very comforting thread. I'm so sorry to read about Pam, but am happy she died the way she wanted to. I've been reading a book called Being Mortal. My husband and have talked about the potential end and how we would both want it. I'll be having this conversation with my dad and sister this summer. I hope and expect to have good years still to come, but I also want to have the conversation about how I want the end to be. For me, "to do everything possible" to keep me alive at all costs would be a nightmare, not a blessing.
Do any of you keep journals? I'd like to, but I have no idea what to write or where to start. I'm just at the beginning of this mBC journey. I appreciate the honesty here.
Carol
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Lynn
Thank you so much for sharing the information. Pam was so brave to share her story and reading her story and yours have been a great help to me. I have loved Ms. Divines input as well. I keep listening to the Avett brothers " No Hard Feelings" at times like this. (I tried to attach a link but to avail sorry, still working on updating my treatment hx) Condolences to all the lives she touched.
Peace
Mary
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This is what I will remember about Pajim.
Her last sentence to us was "LOL".
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Its so sad to hear about Pam and Gumdoctor. I've always enjoyed their posts and I will miss them. RIP.
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thank you Lynne- so sad to hear about Pam! Being mortal is a great book- about to re- read it.
Sunshine99- journals can be wonderful- find a notebook and pen that you love and just start writing. I like it best if I imagine no one else will read it
How are you, Lynne?
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Gumdoctor and now Pajim. Rough week. Rest in peace ladies. They both contributed so much both in life and here with us in the forums. Pajim's "LOL" will always stick with me, her last post here and she was laughing.
Lynne and Maureen, thinking of you, how are you doing?
Sunshine, keeping a journal is a great idea. I blog and journal. Sometimes it helps to keep thoughts from looping or batting around endlessly in your mind. Putting it on paper sometimes, not always can help break the record. I've found this thread comforting as well. I'm so sorry for your recent diagnosis, I see your only a couple months in. Welcome to the thread
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Today is the day a year ago I was officially diagnosed. It took eight months to start medication from the onset of my symptoms. Of course, it makes you wonder how many more years can I get? I just looked back on some of pajim’s posts. On the 16th of April she said she didn’t feel like she was dying, and she passed on the 29th. That’s what I think about the most, how will I know when I’m close? I am doing fine right now and am grateful I have no pain from this. I do believe at this point, I’m not close, but I do think about it now and then.
I also notice Maureen hasn’t been on here lately I hope she’s okay. And others.
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I’m so grateful for all of the wisdom, laughs and love that Pam and Valerie shared here. Much love to their families and to our little family here
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Wow - so sorry to hear about Pam and Valerie. 😭 They were both great contributors to these threads. I enjoyed Pam’s way of explaining things and how much she shared of her feelings and honesty about what she wdealing with.
KBL, I wonder about the same things, how does one know? My primary care doctor told me last week that she talked to my MO and they determined I have 6 months to a year left and what do I want to do? 😳 I don’t even know what to do with that information.
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Wanderingneedle, gosh, I wouldn’t know what to do with that information either. I’m sorry they’ve said that. I hope they’re wrong. I can’t imagine how that must feel.
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I too am mourning the loss of Pam. She was an incredible individual who shared freely with a special mix of compassion and humor. May she rest well.
While BCO has been tremendously helpful, informative and a place of unparalleled support, I find it a struggle when we lose those we have come to know through various threads. I’ve been on this site for over three years now and have seen many of the old guard slip away. It’s never easy. (It’s particularly challenging when the voices simply go silent leaving us to wonder and secretly hope all is well with them.)
KBL, your question is one we all struggle with. It seems, for many, the tide can turn quickly. I Seem to spend an inordinate amount of time pondering this question as I continue to work full time. I am constantly trying to figure out when I should step away. I enjoy my work and the freedom that comes with a good pay cheque but will be seriously irritated if things suddenly go sideways and I have not given myself the freedom to enjoy the time I have left. But at the moment I am doing well and that is expected to continue so I carry on....
Sending everyone a virtual hug at this challenging time.
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Rest in peace, Pam! Another beautiful soul filled with so much kindness, humor, optimism and zest for life taken away much too soon.
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Will miss you big time, Pam and Valerie.
Wandering, maybe your primary care was encouraging you to make advance directives? Do you have them? DNR? I've seen a tendency lately for MO's to pass the difficult conversations along to primary cares. They are cowards when it comes talking about dying. Has your MO said anything about this? Why do they feel the need to beat around the bush? I like real honesty from doctors and never get it. Except my palliative care people. They are the best. Two hour visits. No bum's rush. So worth it. Can you find palliative care where you are?
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Rest In Peace Pam and Valerie. No words
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It makes me so sad to lose Pam and Valerie. They were both so strong right til the end, and I am really going to miss their posts. Their family and friends are in my thoughts and I hope they can find some comfort and peace.
I'm sorry that I've been avoiding this thread lately because I'm usually an active poster here. Have been dealing with issues of my own and didn't want to detract from what they were going through, and sometimes it's hard to find the words to support others when you're dealing with your own issues, and I'm sorry for that. I developed polycythemia a couple months ago and that has been absolutely miserable, not to mention it could cause a heart attack or stroke at any minute until we can get it under control, MO thinks it may mean bone marrow involvement since we've ruled out all other causes. On top of that now it appears that my immune system is overreacting to Kadcyla and I may be headed toward a cytokine storm. Should know in the next few days if we're successful in getting my immune system not to overreact this time. I'm just focusing on keeping myself calm while we work through these things and try to get my body back on track.
I'm sorry that I've been so wrapped up in myself that I haven't done a job of supporting others.
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Sadiesservant, Wow, you hit the nail right on the head. I was awake one night this week well past midnight thinking about if I should apply for SSDI and retire from my work. What you said is exactly how I’m feeling. I also work full time from home, and the income is really good. The thing is, I can set my own hours to work less, and now I have to talk myself into slowing down. I can make more even part time than I would get with SSDI. I can take off any time I want because I’m an independent. I believe starting this week I’m going to force myself to slow down. I find myself pushing harder even when I’m not feeling great. My husband has been telling me to slow down. I think, for once, I’ll listen.
LoriCA, I would say I don’t think there is any need to apologize for taking care of you. I am sure everyone would understand that. I hope you start feeling better and figure out what’s going on.0 -
Oh, very sorry to hear about Pam!! She was always upbeat and funny, and never missed a chance to tell us about someone he knew who'd beaten the odds, at least for a long time, its just a shame she didn't get that chance as well
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