A place to talk death and dying issues
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does anyone have any updates on skylotus, hortense, m360, blondie or rosevalley?
I want to respect their privacy as they are no longer posting. But just wanted to say that they are all in my thoughts.
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Susan3 said she spoke with Rose, she is doing as well as can be expected.
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I've meant to post the link to a very basic guide, "Palliative Care in Cancer," from the National Cancer Institute for quite some time:
Finally, I remembered! Back in a bit....
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What interesting posts here! Stephanie, I like the AJN's "The Dying Patient's Bill of Rights" and wonder how many nurses are simply aware of it much less interested in implementing those concepts in practice. Quickly I will point out that I know some wonderful RNs and have received excellent care on many occasions; however, I have had some really tough experiences at the hands of some woefully inept RNs, some of those downright horror stories. Of course, I will say that's probably true of our experiences with any group of professionals. Look at what a diverse group we are here at BCO, even on this D&D thread alone!
Who should decide what constitutes an acceptable dying process? A meaningful death? A natural death? How much control should any one person have over her or his own life when it comes to lifespan and the manner in which that life ends? In my opinion, society has an obligation to its citizens to establish ethically based parameters around such questions, but ultimately a competent person should have the right to make judgments about acceptable quality of life/dying and the meaning of a "good death," then to act upon those judgments in the way that best fits. I am a strong proponent of palliative and hospice care, and I expect to utilize hospice care at the end of my life if circumstances allow in order to promote my dignified, peaceful, comfortable death, but I plan to have an alternate option available to me if I reach the conclusion that such a death is best attained by ending my own life. I understand and respect deeply those people who would not choose that option, and I always ask--when I am in the midst of a difficult conversation about my wishes with others--that I receive the same understanding and respect.
Let me quickly add that I have not perceived any disrespect here! For the most part this topic has been free of conflict, and I hope that all who gather here will continue to treat each other with compassion and respect.
Stephanie, thanks for sharing more of your story. I hope that your visit with your dear MO was enlightening and helpful. I wonder if he is open about any attachments to you after all these years? I've had many MOs over the last 20+ years and have not been with my most recent one long enough to say we have a "relationship," but I'm hopeful we will get there. I've been with my internist for over 10 years and we've had some pretty frank conversations. My cardiologist and I have a good working relationship as well, and I have known him for only about a year now. Just made me remember another article I wanted to post!
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From Science Daily http://www.sciencedaily.com/releases/2015/12/151222163052.htm
By asking, 'What's the worst part of this?' physicians can ease suffering."
When patients suffer, doctors tend to want to fix things and if they cannot many doctors then withdraw emotionally. But by turning toward the suffering, physicians can better help their patients and find more meaning in their work, wrote University of Rochester Professor Ronald M. Epstein, M.D., in the Journal of the American Medical Association's weekly essay, "A Piece of My Mind."
As a national and international keynote speaker and investigator in medical education, physician burnout and mindfulness, Epstein is concerned about a lack of attention to suffering. It doesn't often fit neatly within the hurried, fragmented, world of clinical care, he said.
The essay was co-authored by oncologist Anthony L. Back, of the University of Washington. Epstein and Back conducted a literature review on how doctors address suffering. Despite the ubiquity of suffering, they discovered few articles in the medical literature--most of which were published in journals rarely read by practicing clinicians.
"Physicians can have a pivotal role in addressing suffering if they can expand how they work with patients," the article stated. "Some people can do this instinctively but most physicians need training in how to respond to suffering--yet this kind of instruction is painfully lacking."
The authors provide an example of how doctors can address suffering more effectively using a story of a patient who went years without a diagnosis, despite pain and disability. Surgery and medical treatments were not enough. Only after her physicians became truly curious about her experience, listening to her, looking at her, and bearing witness, were they able to help the patient heal.
Epstein and Back offered two clinical approaches to suffering to complement the familiar "diagnosing and treating." These are referred to as "turning toward" and "refocusing and reclaiming," and the authors suggest that doctors use these approaches routinely.
Turning toward suffering means to, first, recognize it. It requires physicians to ask patients about their experience of suffering, through questions such as "what's the worst part of this for you?" Sometimes doctors feel helpless in the face of suffering, and in those situations their own discomfort can be a useful wake-up call.
To refocus and reclaim involves helping patients reconnect with what's important and meaningful in their lives, especially when suffering and its underlying causes cannot be eliminated. Sometimes that requires physicians to be supportive of a patient's efforts to become more whole. In the case described, the patient separated from her spouse and re-established a professional identity. By making those changes she saw past her suffering and again viewed herself as a complete human being.
Asking physicians to engage as whole persons in order to address patients as whole persons "is a tall order," Epstein and Back wrote, "yet, it strikes us as more feasible than ever because of evidence that programs promoting mindfulness, emotional intelligence, and self-regulation makes a difference."
Epstein's published work is among the most widely cited in the scientific community; earlier this year four of his medical education articles were ranked by Academic Medicine as among the top cited in the last century. Back has also published numerous articles on patient-physician communication and palliative care.
DailyScience Story Source: The above post is reprinted from materials provided by University of Rochester Medical Center. Note: Materials may be edited for content and length.
Journal Reference: Ronald M. Epstein, MD; Anthony L. Back, MD. Responding to Suffering. JAMA, December 2015 DOI: 10.1001/jama.2015.13004
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((((Rosevalley))))
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Had another love fest with my oncologist yesterday. Fortunately, he's of the old-school, listens well and does a thoughtful physical exam checking for edema, anemia, liver size, tumors, heart, belly and lung sounds, etc. So, I felt heard, seen, touched and cared for - all the best medicine by someone I love, respect and trust. He can't cure or fix me, but our visits restore my soul and spirit.
(aside: He reminds me of of Stanford professor Dr. Abraham Verghese's work to restore the art of physical exams in an age where doctors often pay more attention to machines and test results than their patients.)
Sitting in the waiting room of the oncology center, I connected with others - someone in remission, an 89 year-old mother, someone newly diagnosed and her caregiver mother. And I realized, again,that the emotional/social aspects of living longterm with mets are under-reported. Maybe because there are so few outliers like me?
Lately, I've been asking about finding my way around bc.org, at Entering and Exiting at the Stage IV Forum
Associated topics come up like member participation (or not), grief, survivor guilt and envy.
Woke up thinking about envy, but also pride, regret and forgiveness.
I wasted many years envying my age peers blessed with good health and living normal lives. I finally recovered from that envy to find myself envious of those diagnosed with cancer or facing death later in life. But, yesterday's meeting with the old woman showed me that I wished her and everyone only well and appreciated her years of good health, productivity and love. It was like the cramped place in me relaxed to allow each person his/her life.
Pride can be as self-damning as envy, as deadening as pity, though it puffs up rather than cramps up. For many years I haven't spoken much of outliving my prognosis and what I credit (hard work, good fortune, great holistic care). I'm afraid of offering false promises or inciting others' envy. I've no recipes for success to offer.
Now that I'm officially dying, I've given myself permission to stop putting my life into little boxes and keeping silent. What I share may be helpful to others.
And, although I've done my best to live without regrets, I'm intrigued by the Dignity Therapy practiced by the hospice doctor. It's said to be all about dying without regrets (and forgiveness of self, others & life?). Will report back, if and when I learn more.
Today, the hospice nurse comes and we'll track new symptoms. Happy to have the hospice care net to drop into after a lifetime of daily self-care.
Enough ruminating, getting about my day with nausea under control. Hurray!
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Rosie thanks for the card, so sweet...thinking of u.hoping things have settled, dont baeupset
With others did know u felt thatwaybe am so besmurched about
Love u all
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Letranger I am still here thank you for asking.... I had a PM with Rosevalley awhile back and she encourage me to post even though I thought my post were not enlightening but more about venting. I've spent more than a few days in the hospital going the ER route and then what to do next?! I've made it through another month and I must say that even though the doctors say the end is near, I'm not feeling it spiritually. I have held so many hands as friends and family passed on from this world and knew the day that each one was going to leave. I have Palliative Care and 12 hours a day of In Home Health broken up how I want. Reading the post of all of you whom have posted on Hospice it didn't fit "me". Last year at this time my cancer was out of control and spreading throughout my body and bones at such a fast rate that they didn't feel that I had a month more to live. That is when I came home and went to the NIH website and read through and found three out of I don't know at that time maybe 50 trials which were being conducted for Breast Cancer being Stage IV and doing so much chemo excluded me from most of them but I did met the criteria for three. There was one that my gut reaction just seemed that it would give me more time with my daughters, I was able to get into that trial and it has given me this past year. I'm still on the trial but my body has become so weak, numerous infections to the point of being hospitalized each time and then my almost dying from being Neutropenic where necrosis set into my mouth tissue along with nose and throat having emergency surgery. If I was in Hospice during such I would have died, instead I was given the time to continue my fight. Being on this trial was never going to rid me of my cancer or even put me in remission it would at the most give me more time, and that it has. However, I'm having intestinal complications which are what might be the death of me. I think of Rosevalley and how I understand where she is at physically. Where we differ is that I've been given IV meds along with other medication for my intestines plus IV vomit meds (Emend) and as much morphine as I can handle. Still with four different vomit medications I still vomit, and no matter how or what the pain is never gone. I feel like I'm in labor and that someone is pulling my hips apart and lower vertebrae so that I can't sit upright. Today the doctors called and said lets go over what care you have been given and what symptoms and pains you are experiencing, then where and what do you want to do.
My cancer is not growing with this trial and if it will help me to sustain life I personally must continue. The doctors say that they will help me stay comfortable and will add medications to help me with all the pain so that I will just slip slowly out of life. As long as my blood work shows it's okay to have chemo they will continue to give me such. I really believe that I will go from my heart giving out from all the pain!
There is so much more that I want to say and comment on but I'm exhausted from just this much to post. To all of you, I care and I try to read up on what is happening to all you lovely ladies. Sometimes my daughter reads your posts to me when my eyes just refuse to focus so that I can't read anything at all, another side effect from so much chemo. Rosevalley I hope you're feeling better today and that things have not become too much for your body to endure? To all of you who are walking this path with me, may your days be filled with laughter and love. I care so much for all of you.
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Tough day...forgive the brevity...bed and rest are calling now. I have tried repeatedly to post on this thread from my iPhone 5S when lying down, resting, but I ALWAYS have problems and often lose my posts. Does anyone else have that problem?
Stephanie and M360, you both share your musings, beliefs, life experiences, and current situations in such heartfelt and meaningful ways. I continue to be so grateful for your sharing. M360, yes, your voice is appreciated here, and I think this thread is more helpful to others when many people of diverse views share. Please stay in touch, even if it's just a few words or comments here and there, if you feel well enough. Stephanie, your life certainly has taken some interesting "turns." I understand well the process of overcoming envy of others' good or even stable health, because that was an issue early in my life and one that arose again and again for quite some time. One of the issues in the midst of my current health struggles is how some people so easily dismiss the challenges of living with advanced heart disease and with a rare vascular disorder while reminding me that I am so fortunate to have NED status after a mets diagnosis in 2009. As if the only thing that matters is whether one has cancer or not. As if I have to be reminded to be grateful that I have NED status.Thankfully, I don't feel like I have to prove myself to be worthy of compassion and concern, and I am assertive and most often (but not always) kind when sharing with others who make outrageous assumptions about my health and my daily challenges. Oh, well, enough about that!
Stephanie, I also wanted to mention that I have read about Dr. Abraham Verghese's work as I have researched cardiac disease over the last 13 months. I am so grateful that he and others like him are still practicing and speaking out in the field of medicine.
Blondie, Hortense, Skylotus, however you are or wherever you are, please know you are in my thoughts as well. I know there are many others who face challenges-- Gator Gal, Letranger, I just can't remember more names right now--and I hope for clarity, peace, comfort, and joyful connections with others.
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M360, it soooo good to hear from you! Loved reading your post about how you were able to get more time through the clinical trial. And It's so sweet that your daughter reads the posts to you. I visit this thread often even though I don't think I am at death's door, yet I know I will be someday and I gain so much insight and feel less fearful of death. No, that's not true. I just feel like I can prepare myself a little. Or maybe I just like you all!!! And I do. I joined this thread just before CalicoCat passed and although I was new to the threads, her death really affected me, being a brain mets sister. She was so incredibly kind in her posts.
I saw my grandmother pass in a hospital last August. She was 86 and her lungs gave out (not BC), but they kept her on a respirator until ALL the freaking family could be there. It was awful to see her breathing so heavily and laboriously in the mask that was almost taped to her! I thought it was so cruel to forcefully allow oxygen to her when she was obviously suffering! So when all the "royal family" finally got there they gave her morphine and removed the mask. She passed peacefully then within 45 min. I am still mad about it. Everyone knew at 10 am that she had only a couple of hours, so get your butts there! But they took their time and did not arrive until 5pm.
Anyways, I'm not sure what my point is, but I don't want to be kept alive like that unless the real royal family going to visit me! No, I mean I am learning from my grandmother's experience and the voices on this thread how I might like to pass. I hope I have many, many more years with my 4 year old.
My love to you all. letranger
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This is Cassandra, Tricia's (Sky Lotus's daughter). She was placed under the care of hospice in September and honestly didn't think she'd see Halloween and now it's 2016. She's a toughie, hanging in there. My sister and I are taking care of her as she is now bed bound and unable to use the toilet and soon the commode. Just wanted to let you know as I know she used to write here a lot. Please keep her in your thoughts. We keep hoping for another day, but she is on the steady decline as she has double vision, trouble speaking and is unable to type.
Sincerely,
Cassandra
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Cassandra, so grateful for the update as we have all been thinking about SkyLotus/Tricia.
May the angels in heaven and on earth (you and your sis) wrap your arms around Sky and deliver pain-free days and love and comfort from all of us here.
(And comfort angels for Rosevalley, M360, Hortense and Blondie, too!)
Letranger
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Cassandra thank you for sharing. Your mom is important to us. Please take care of yourself and have your sister do the same. Your mom raised some beautiful girls. You are a tribute to her. Thank you!
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Hi Brenda,
I've been chewing over what you wrote today:
One of the issues in the midst of my current health struggles is how some people so easily dismiss the challenges of living with advanced heart disease and with a rare vascular disorder while reminding me that I am so fortunate to have NED status after a mets diagnosis in 2009. As if the only thing that matters is whether one has cancer or not. As if I have to be reminded to be grateful that I have NED status.Thankfully, I don't feel like I have to prove myself to be worthy of compassion and concern, and I am assertive and most often (but not always) kind when sharing with others who make outrageous assumptions about my health and my daily challenges. Oh, well, enough about that!
The less graceful part of me, Stephanie, says, "So what's metastatic breast cancer become, a status symbol for the elite?"
Like suffering, dying and death are valid only if one dies of a popular disease like breast cancer?
When my friend died of breast cancer, I said, "this is the form of death's scythe today. Tomorrow, it may take another form."
When we see the glinting blade swinging toward us, we don't really care which form it's come in. It's death. Our death. My death.
Yet, there are societal preferences for legitimate and illegitimate suffering, dying and death. I think a lot about dying of lung cancer (which my father did 30 years after he stopped smoking). Why is my breast cancer seen as an innocent and tragic death? And his as shameful, the result of his young actions? Why do I garner sympathy and he garnered shame? Why is breast cancer research funded (though we'd like more for Stage IV) while lung cancer largely ignored? How is it that we receive so much more - sympathy, services, media airtime? Yes we're great advocates for ourselves, but rather than being for a segment of the suffering, can we be for all who suffer?
And, Brenda, why isn't your suffering and possible dying and death from advanced heart disease and with a rare vascular disorder as tragic and noteworthy as another's death from breast cancer?
When it comes to the end, it's still death and we're still called over that threshold.
No answers, just noodling, Stephanie
P.S. I'm enjoying the related topic Will I die of MBC
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Cassandra, thank you for posting and thanks to you and your sister for caring for sky lotus. My heart goes out to you both. Give your mom lots of hugs from all of us
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Cassandra thank u..thoughtts n prayers.
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Cassandra, thanks for letting us know about sky lotus, she and Rose valley were among the members I hoped to meet when I joined conversations at bco.
I even joined her blog and read many posts - earthandskylotus.wordpress.com
She wrote on September 27:
"This is a very slow process. Literally, one day at a time, one step at a time, one moment at a time. We're all getting a huge lesson in living life that way. Not sweating the small stuff, as that particular book says. My kids are doing the amazingly best that they can, and my friends are chipping in as they can. It's kind of like a litmus test right now…how's she doing? What can we do?"
It has been a long, slow process and I'm glad you all have been part of her awe-inspiring, awful, awesome period of transition.
Sky lotus is a beautiful, unique being and I wish her the safest and cleanest of exits from this world into the great unknown.
Continued meditations for her well being and the well being of all!
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Hi All. This is such a journey we travel.. together all of us. We are unique and individuals but share a common journey. This is comforting to me. To know others all over this world near and far, different languages and cultures all walk the same path. I watched a show (ages ago) on breast cancer in Africa and the poor woman slept under the stars on the hard packed earth outside the clinic. She had a meager parcel of possessions, a blanket and food. She journeyed alone because it was too expensive for more than herself to go and endured the treatments alone. She had lymphadema in her arm same as me. I could feel her pain and endurance. The image of her grit and love for life never left me. I realized that breast cancer touches all women in all societies everywhere. No one is singled out. I wish more than anything besides world peace and an end to conflict, that there would be major break through in curing breast cancer.
Thank you for your updates I just read them! I miss you but just haven't had the energy to post much. I do some activites and it wipes me out. I managed to get through my bucket list of birthdays and Christmas.. puked my way through off and on through Christmas break. By Tuesday I lost it with intractable vomiting and went to the ER, in tears I felt so miserable. They were great. They gave fluids, IV nausea meds and my kidneys were affected.. potassium high, hardly any output since it all got puked out. Well once I got fluids it was apparent I had yet another UTI. The only thing they didn't check in the ER. So I called my PCP and got renal adjusted cipro and feel SOOOO MUCH BETTER. I have vomited one time (ginger ale and carbonation is a no no) since Tuesday. Other than that I have kept fluids and boost down and am back to normal urination. I am still weak and tired but over all it's a dramatic improvement. I see palliative care on Monday. We are going to have a sit down talk about what COMFORT CARE / PALLIATIVE means or should mean.
Remember that the restrictions I mentioned about hospice are because of my insurance not hospice in general. Hospice in Sarasota with my Dad was in my opinion outstanding. So once I iron out what I can and can not have in options then I will consider hospice. My husband does not want hospice and wants to continue with doxil since once the UTI got sorted out there was a dramatic improvement in my ability to drink and sustain myself. TMI but I have also had BMs and pass gas, so my gut is clearly open, just restricted. The ascites has slowed a bit. I just don't know what to think. I want to see what the tumor markers are and if my kidneys have recovered. Right now I feel more like i am living then dying.. so stay in that present moment (the only one we ever have really) and enjoy life!
Cassandra my heart goes out to you and your sister. Take care of each other. Give your Mom a big hug from us and tell her she is loved and we are holding her in the light/spirit of friendship and caring. M360, Hortense and Blondie and Torridon many hugs and warm wishes for peace and comfort sent your way. Lots of love to everyone. Thank you.
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Rosevalley: thank you so much for posting here. Saw your posting in Torridon thread first; you are so brave and unselfish even in your difficult situation, you care about others. Hope you continued confort and peace.
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Rose, I'm so so glad you're feeling somewhat better. It's lovely to read your voice.
Hugs for the weekend. . .
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it's so good to see you. Glad you're feeling better. Hope hospice can keep you feeling good.
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Rosevalley, thrilled to see you posting the news that you got sustained and revived! So very happy!
Cassandra, thank you for updates on your Mom, Slylotus. She is in my constant thoughts. Thank you and your sister for taking good cares of her.
M360, wish you good energy!
Blondie and Hortense, hope you are comfortable today.
Stephanie and Brenda, enjoy your wonderful posts!
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Rosevalley: So glad you posted and you are feeling better. ((hugs))
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Rosie posie!!!! So glad to see you post....kisses and hugs to you. And of course prayers
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Yay rosie great news. When i go in the nursing home hospice. Comes in there they told me. I understand. That your. Husband is part of the team but u r the boss they do what u want i am living by stary in the moment slow makes sure i do.
I think about u all the time,..we will hold hands n go together but not yet i still have things to do.
Thank u everyone we appreciate u posting, checking on us (speaking forcboth of u,sooy rosie)
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Blondie: you are right, you can't go yet, you still have things to do!!! Rosie, you still have the fighting spirit, and you can't go yet. Love and hugs to both of you, and Hortense, Skylotus, M360 and Stephanie. Thanks for sharing your brave journey with us.
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Letranger...know what you mean about your grandmother. My 97yo grandmother was sent repeatedly to hospital from nursing home whenever she had a "crisis" (read: change in status during decline), and I was really afraid she'd die in an ambulance. Her POA/my aunt didn't want to "give up on her" but finally, FINALLY, one of the MDs at the hospital bluntly told family and NH staff, "Quit sending this lady to the hospital!" My grandmother just wanted a peaceful death & loved ones surrounding her when she died. She did not go back to hospital but did not have access to hospice at the NH (whose staff "did not believe in hospice"--as if it were Santa Claus), the NH did not provide her with morphine until I insisted the MD be asked for an order, then the NH did not get her morphine for terminal agitation until after she died. Heartbreaking. The long-term impact of her dying that way has motivated me to be as clear as possible about comfort care in my advance directive. And to do all I can to educate people about hospice and palliative care.
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Cassandra, you are kind to update us about your special mother. Sky lotus, so many of us are holding you in our thoughts and hearts, with hope for peace, comfort, and an abundance of love.
Bon, when I joined this topic, I gathered items from your list to help me build my dying& death file. Thanks for caring enough to share.
Stephanie, your comments about judgments regarding honorable versus shameful deaths are thought provoking. i must admit: sometimes I find myself questioning why this topic is so meaningful to me and realize one of the many reasons is that I am judgmental about my own mortality. As in, I will likely not die in a violent manner, from poverty-driven hunger, alone and abandoned, or in any other of a number of ways that humans all over this world find themselves struggling to endure, so why should I be so concerned? Then I remind myself: I am HUMAN, just as deserving of compassion as anyone else. So much to learn...
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Rose, heartwarming to hear from you. In spite of fatigue, your voice sounds strong. So relieved you feel more comfortable and hopeful comfort will continue. Also hope your palliative care conversation opens some ears and promotes greater understanding, then right action--on your behalf and that of many others.
Blondie, sounds like you have a plan in place for what's ahead. Hope you are getting what you need from hospice and loved ones.
Xavo, your kind words are much appreciated.
To all others who share this space--by reading only and by posting, what energy and love is shared in the process! We are truly fortunate to be able to share and not to feel alone. To paraphrase the Swedish proverb: A joy shared is a joy made double, a sorrow shared isa sorrow cut in half!
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