A place to talk death and dying issues
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SAS. Well said as always
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Sas. 👍
Rosevalley. We miss you. Hope you are knowing this and reading the thread.
️Hugs.
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SAS - I do hope the Mods listen. I read this thread EVERY day but never posted because my recurrence is only Stage 3. Never the less, your thoughts & ideas mean a great deal to the rest of us in the community. Lots of us are standing by you every step of the way and I've been so grateful that this thread allowed members to say whatever was going on in their lives and their heads. I don't want to hear just the rosy side. That doesn't mean I'm negative, I've just been glad to see how people are addressing the problems of living & dying, and I have learned so much from everyone. And I too will really miss Rose and her wisdom and patience, and yes, her acerbic sense of humor on occasion. I hope we can win her back.
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Ladies, we are all in different places in our lives. Different places in the course of this disease. And we feel differently about both how we feel physically, mentally and in our souls. Some are accepting, some are grieving, some are angry, maybe even some are at peace.
How we feel may (will!) change over time.
BUT!!!!! All these feelings are valid. And we need to respect that, all of us.
One of the people in my office, her husband is dying. And has been doing so for over two months now. It's very hard to watch. It's even harder to support her. I keep thinking "when my time comes. . ." and it WILL come. When I say something to others, they say "that's a long time in the future". That may be so (God wiling). But it may not be so.
None of us know the future. But I know I can count on you for help. ideas and support. Lets keep it that way.
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Deleted because I want this to end. Wishing you all the best
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MT, I'm not stage 4, but I've been here since the beginning pg 3-or4. Odd that I would so long ago get Ma's feelings on other than Stage4 being here. I lurk too, to see how folks are doing.
Bon's back on the boards, but hasn't come here. She was the mentor that took over after Ma passed. She is the maker of Bon's Bag.
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M360,
The tremendous effort you must have given to your last post! How thoughtful of you to reach out to us. I am so disappointed on your behalf that you are experiencing so much pain, and I dearly hope that you or your daughters will contact your MD asap to address this. No one should have to suffer from pain. You sound as if you are unsure about the value of the clinical trial. You asked if it is working for you, is it worth it? Of course, only you can answer that question. Whether it is or is not, what kind of quality of life do you think is a "good enough" quality of life? Each of us needs to be as clear as we can in how we consider that monumentally important question. And also the questions: What do we value most? What do we let go that we might have never thought we could?
I know that it can be hard to sort through those questions and come to some workable answers. Is there an oncology social worker or palliative care team member who could work with you to assist you with finding greater clarity? Have you already thought of these questions in the past and have some reflections or decisions that could guide you now? Perhaps, just perhaps, the fact that you dreamed about your death is a sign that your unconscious mind wants more of your attention regarding where you are at this point in your life. And, no, I don't necessarily think that your dream is a sign it's time for you to leave this world.
Sometimes people make treatment choices for their family members and not themselves. I don't think you are betraying your relationships with anyone else if you decide what is right for you and decide to make that the #1 priority. You mentioned that your daughters want you to keep trying for aggressive care because they want as much time with you as they can get. I wonder what they might conclude if they thought you might have a more peaceful and comfortable life and possibly even a longer life if you chose no more aggressive care--and if you chose comfort care only, like that provided by hospice? What would you think if you knew that you had six months left to live and you could be very sick throughout that time from treatment or you could live that length of time without being sick from treatment?
The trouble is, we can't see our future, and often that means that we err on the side of too much treatment because we are afraid to stop and we play the endless "What if?" game. This is a time you also need to trust your doctors to be honest with you about your prognosis. Do you have trust in them? Have you had the difficult conversations with them about, "Will you tell me when you suspect treatment will do more harm than good? When it is time for me to choose a different path with my care?"
I trust that you will receive all this feedback knowing that I send it in a spirit of lovingkindness.There may be some who will be angry with me for bringing up these issues and questions, those people who say we should fight to the end, no matter what. However, as we have learned, this thread is for people who have many different perspectives, not just one. I would want someone who cares for me to help me ask myself those questions and to find answers that gave me peace. I'm holding hope for peace for you.
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Praying that you will find relief from your pain and that the trial is shrinking the beast living inside us.
Hugs, beatmon
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Love to you M. Hope your sleep tonight is full of only the best of dreams. And it's okay for your body to need deep and seemingly endless rest - especially on a tough chemo. It's okay to trust your body knows what's it needs. Frustrating for sure but it's okay to relax too.
Looking forward to your poem when you are good to share it.
I too am holding rose in my heart. Rose's anchor is her connectedness to all things, She is connected here
Sophie
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M360 - I agree with Brendatrue - but, easy for me to say, I've already told my onc and PCP that I don't want to be struggling to the end in pain and misery but of course I am a widow without children or grandchildren and that might be a game changer for me so like I mentioned above "easy for me to say" and only you can decide what is good for you. Sending gentle hugs your way and hopes for peace. S.
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I just read this article on chemo at end of life
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Here's a link to a notice for a very interesting program offered by Compassion and Choices:
http://www.compassionandchoices.org/2015/06/15/doc...
"To improve doctor-patient communication, Doc2Doc is specifically tailored to offer practicing physicians a free, confidential and readily available telephone consultation from a seasoned medical director with decades of experience in end-of-life medical care."
"...Doc2Doc is based on the premise that a physician's informed communication with each patient about the full range of end-of-life options should center on the healthcare goals of the patient, not the doctor. This communication is necessary to weigh the benefits and burdens of various treatment options to align them with the patient's values and priorities. Ideally, these conversations often are uncomfortable, but are critically important, and should begin soon after a diagnosis of terminal illness and continue throughout the progression of it."
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There's a lovely, thoughtful essay, "My Periodic Table," by neurologist and author Oliver Sacks under "Sunday Review" on today's New York Times home page that some of you might enjoy reading. Unfortunately, I can't get the link to work!
Tina
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Brendatrue
Thank you for both articles Good reads , things to think about for all of us
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Folks Rosevalley is on Insomnias thread. Not sure if she was banned from coming to this thread. She may try to pop in.
She doesn't want to do a separate thread for good byes. I asked if she wanted me to come tell you to come there
She says she doesn't want to talk dying, she wants it light and funny. I don't want to complicate things.
Why don't you just lurk until you see what her wishes are.
She's in hospice, plans in place. look for her post from yesterday, then today's posts. sassy
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Thanks Sassy.
I posted to Rose on Insomniacs thread.
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Thanks goodp
To everyone. just post
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First I hope you will all excuse my intrusion.
I think it's fairly obvious that there are women reading this thread that aren't stage 4. We read and celebrate when life is going well for our sisters, wring our hands when they progress, and mourn secretly when one of them moves on from this life.
Rosevalley, I'm not good with words but I did find this:
I think you've nailed that here - you've touched so many. Thank you for sharing your humor, struggles and life on this thread.
Wishing you love, peace and pain free days. -Beppy0 -
Sorry, My last message wasn't complete. Post to Rosie over at Insomniacs thread
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Slowdeepbreath...very thoughtful, much appreciated post.
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Please, excuse any errors, I Pm'd SDB's about posts to Insomniacs----------------I think
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I posted to rose on the insomnia thread. I have to say that I am angry. Angry because we are losing her. Not just on this thread. I admit to being a slow learner and I look back now at some of my posts and I'm not proud of everything I have said...but it's amazing what truth comes out when you sit back and just read. And the truth is rose has every right to say what she wants. It's not freaking bullying to pour your heart out about the loss of another sister, let alone her decline in health, and having to put down her dog. Wtf is wrong with people? Grow the f*** up! Take your one, grade one met and shove it up your ass. Have some compassion. Or better yet, go to the alternative thread and bash some ladies there for their choice of treatment. Pick a thread, really. Just stir the pot and then play your little Pollyanna role. I'm done with you, Caryn
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Wow
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Enough,, I've been out of high school for decades
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This all needs to stop Yes NYC I have been out of high school forever and don't have the time or energy
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Morning, please, keep coming to see Rosie as often as you want sassy
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ugh so sorry to see kjones post deleted by mods. Although it wouldn't necessarily be what I might say I think she should be able to say it. Certainly don't consider it bullying. Its on the DD thread not the happily ever after thread. I feel you don't always have to be right. Its OK to say sorry for how you are feelng and if I added to that without admitting defeat. Its not about who stands and refuses to back down and be quiet just to be " right". Isnt this stuff we should have learned from our elementary school teachers? I think there's room for everybody somewhere on bco. But DD thread isn't the place to fly the " look how good life can be for some of us " flag. I personally have been encouraged countless times with the life doesn't end with stage IV thread and so many other comments from caryn. However this is NOT the place. Read the topic box. " we don't need someone telling us to live life or to hear that other people have lived a long time. An apology goes a long way to heal hurt. Just saying.
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Hi, all.
This is a friendly reminder to all that if you disagree with a member or thread, we strongly encourage you to use our block member or block thread feature.
Also a reminder that these boards are meant as a safe, respectful place for all to post their thoughts, fears, opinions, etc. but it is NOT appropriate to be disrespectful, rude, or unwelcoming. If you do not get along with a member, again, use the block member feature.
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--The Mods
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BirdWings (Rumi)
Your grief for what you've lost lifts a mirror up to where you're bravely working.
Expecting the worst, you look, and instead,
here's the joyful face you've been wanting to see.Your hand opens and closes and opens and closes.
If it were always a fist or always stretched open,
you would be paralyzed.Your deepest presence is in every small contracting
and expanding,
The two as beautifully balanced and coordinated
as birdwings.0 -
Hi, Brendatrue, I feel like Rumi is popping up all around me. If I can keep my eyes open long enough to read anything, I will search for more of him/her/it.
I stole your tag line about the Wanderer and took it as a topic to an on-line 12-step program I belong to. I didn't know if it would fly or not, just not sure the reaction it would elicit. It didn't just fly, it soared! Thank you for the many gifts you bring.
xoxoxooooxoxox
Calico
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