A place to talk death and dying issues
Comments
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Brenda, I am not trying to change the subject of this thread. I am just thinking about Rosevalley's question, what hospice could do about her severely compromised digesting system due to abdomen mets. I think Rose's question is a right one. Without treatments to reduce the symptoms, probably hospice could do very little to provide the relief Rose is looking for. Hospice might be able to provide drugs that relax the patient but not anything that is aimed to sustain (not to be confused with the desire for living, but the desire for the quality of the time remaining). No, I am not having any opinions of hospice and whether Rose should or should not be on hospice now or ever. I am just very shaken by Rose's sufferings and thought treatments should be included in hospice care. I think Stephanie's advice is highly valuable: talk to hospice and ask for allowing symptom reducing treatments. Again, Brenda, I am with you. I just think we might be able to brain storm on solutions.
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HI Xavo,
Using only my hospice experience as an example, I've been encouraged to try as many complementary and holistic approaches to symptom relief as I'm intrigued by. While I was already working with Iscador, anthroposophic and homeopathic approaches, they've also offered art and music therapy, visualization, relaxation, social and spiritual support, practical solutions like medical devices/adaptations and drug dosing cocktails, combinations and timing. They are willing to troubleshoot any problem I bring to them and to work for solutions that are acceptable to me.
When I spoke with my nurse today about my level of pain and dipping into the morphine, she told me to call her during her working hours and she'll call right back. AND to call the 24/7 on-call nurses when she's not there, because they will come out to help me when needed.
I feel so appreciative, as things are definitely changing for me.
While the drugs they offer are closer to the big guns medicine we're used to, they have many other tricks up their sleeves that have already been helpful for me. And I imagine close family caregivers and those with complicated family dynamics would benefit too. Also, knowing that bereavement counseling is offered at no cost to my survivors for year after my death is a great relief to me.
I was told that hospice is available at no cost through Medicare and most insurance policies pay for it, because it is such a valued service. I didn't check out this claim and am curious whether anyone has ever been "turned away for lack of funds".
While hospice isn't right for everyone all the time, it can be a life saver by ensuring better dying for many who participants.
The biggest problem for people with cancer is that hospice referrals are usually made within a few short days of death, while the patient is actively dying. This means the team is trying to catch up with out-of-control symptoms and ease the transition, rather than prepare for a more gentle, dignified and softer take-off from embodied life.
Warm gentle hug, Xavo. Smiling remembering your photos. Thank you!
Your friend in the country on the other side of the country, Stephanie
P.S. A good book that shows the holistic approach of SF Bay Area hospices is Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying by Judith Redwing Keyssar, RN, BA
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From Wikipedia's hospice entry:
Expense
The cost of hospice care may be met by health insurance providers, including Medicare or Medicaid for eligible Americans. Hospice is covered 100% with no co-pay or deductible by Medicare Part A except that patients are responsible for a copay for outpatient drugs and respite care, if needed.[44] (Respite care may be necessary, for instance, if a family member who is providing home hospice care is briefly unable to perform his or her duties and an alternative care provider becomes necessary.)[44] As of 2008, Medicare was responsible for around 80% of hospice payments, reimbursing providers differently from county to county with a higher rate for inpatient hospice care. A lower rate is paid for home care with a higher rate paid for round the clock nursing care in order to get a patient's symptoms under control.[8][9]
Most commercial health insurances and Medicaid have a hospice benefit as well,[45] and these typically mirror the Medicare benefit. There may be a co-pay required by commercial health insurance providers depending on individual plans.[46] According to a 2008 article by Lauren Tara LaCapra on TheStreet.com, Medicare and Medicaid paid 78% of home-based hospice charges in 2008, with 12% being supplied by private insurance providers and 10% "out of pocket", paid by the patient.[47] Most non-profit hospice agencies have contingencies for patients who lack insurance coverage and will provide care to the patient free of charge or at reduced rates.[45] LaCapra said that out-of-pocket expenses for home-based hospice services were $758 a year in 2008 for the average hospice patient.[47]
Once a patient is enrolled in hospice, the hospice becomes the insurance payor for that patient for any hospice-related illnesses.[46] In other words, if a patient is on hospice for end-stage congestive heart failure, the hospice is responsible for all care related to the heart failure. However, if the patient were to see a podiatrist, this would be billed through their regular insurance.
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Xavo - thank you for the post. It was an interesting read too. I know I still hope to be an exception and as I mentioned to a friend I had not seen in a while (at the 50th wedding anniversary party)but resigned that I have lived long considering -"I can't complain about the time I have had..some folks get 9 weeks or 9 months and I am 9 years out going on ten." When you look at it that way it isn't so bad.
Still I have puked absolutely everything up today... boost, water, pills, clear beef broth all of it. Painfully. So I decided if I 'm going to puke it all... I am eating vanilla ice cream. At least it will taste good on the way back up and it cools my burnt throat on the way down. Fluid off today 1liter and I will hang a liter tomorrow after my port gets reaccessed and labs drawn. These fluids are life saver.
What bugs me about my treatment since I returned from Mayos is no one will let me try faslodex. If It worked again and my tumor markers are 100% ER PR + it would be great,. I am weakly Her2 and herceptin did nothing and my markers climbed. They climbed after doxil dose one and if they are still climbing I will quit doxil. The N/V from it added to what I have is unbearable. My feet and hands are red and weird, my skin papery and dry, hair is falling out. ugh.. I need something that kicks estrogen out and you don't have to swallow it. I will ask about radiation to the gut. I had radiation to my left shoulder, hips and right distal femur above the knee. That sure did work for pain control.
If I get shot down again... then I'll need to think some more. I am glad everyone on hospice is doing well. none of you have intractable vomiting. It's a game changer. Night all. Sweet dreams.
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Anybody watch the movie "A woman Like Me?" it's supposed to be on Netflix. Susan Gubar from NY Times wrote about it. The movie is about a woman with metastatic breast cancer who dies at 50. She spent the last year of her life filming what it was like. Nurse comes today and I will try and watch it after. Have a great day... it's raining but supposed to be sunny on Sunday for maybe a week. hope so.
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Xavo, Your comments are thought-provoking and describe a deep concern for one of our sisters' deep suffering. I share that concern as well, and I hope that's obvious. I am one of those people who gathers as much information as possible in order to make the best decisions for me at any given point in my life, recognizing that I may not have critical pieces of information when I make a particular decision and that one day I may look back and say, "Well, that didn't turn out to be the best decision for me, but I did the best I could with the information I had at the time." Because I have received very helpful information, wonderful feedback about possible decisions, and very significant support from so many women here at BCO and elsewhere, I always do my best to respond in kind. Because I know that this topic unsettles many and downright frightens quite a few, I am very careful to do my part in providing potentially helpful info, feedback and support. I don't presume to understand fully every person's unique circumstances or even their own unique perspective, but I do try to offer whatever I may have to give that might make a difference--in finding clarity, making decisions, offering compassion and support, avoiding judgment, and holding hope. When I posed a question to you in my last post, I was doing exactly what I would have been doing had we been sitting around talking one-on-one: asking a question that brings clarity to the conversation, no judgment implied or intended. I presume that all of us gather here to ask the tough questions, explore answers that might or might not work for one or more of us, and stay connected in mutual respect and support. With each of us offering what we have to give, we have a much greater chance of being helpful to one another!
Rose, You mentioned "none of you have intractable vomiting." You are right: I don't have intractable vomiting at this point in my life. And if I did, I still wouldn't presume that my experience was just the same as yours even though we might have some things in common. What I do have is compassion, my own unique knowledge base, a desire to help and to offer support, and deeply felt motivation not to abandon those for whom I care and to stay connected even when "things get messy." I appreciate your clarifying that you still hope to be an "exception," which helps me (and others, certainly) to understand your perspective at this stage in your life. If you don't mind my asking (if you do, just ignore my question or let me know), what reason(s) are you given for not receiving faslodex? Rose, I also want to mention that I do understand that we evolve along the way as we live, and that what we once thought we might/might not do in a given situation may change when we get to that situation! I do hope that I will be consistent in how I approach choices based on my values, belief system, etc., and I have spent a great deal of time contemplating the "meaty issues" and making plans, but I will just have to wait and see whenever I get to a certain point in my life. By the way, I have "A Woman Like Me" in my Netflix queue. Let us know what you think when you watch it.
You know, I have to mention, too: I'm always grateful when we can work through misunderstandings, miscommunication, hurt feelings or anger, or any of the difficult aspects of staying connected to one another. I think we are worth it!
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Stephanie, I was thinking about your use of the phrase "slow dying." I know that so many people think of dying as those last hours or days before an actual death, but I don't. I tend to think of the end of life as living while dying and dying while living. I know: it's not very profound, but it has released me from the trap of thinking that dying doesn't happen until right before death. I thought about this again the other day as I was reading an article by an oncologist who described the long, downward spiral of a man's health and life through treatment after treatment and his family's shock when a doctor tried to help them understand just how close their loved one was to death. They had not realized that he was "dying"! I had a similar experience when my "second" father was dying a few years ago. My mother simply did not wish to accept that he was dying, even when he could no longer care for himself or stand, slept most hours of the day, ate only bites, had tea colored urine, etc. After more than 120 days in home hospice care and then 7 days in a residential hospice program, she was surprised when he died. This, in spite of my telling her in many different, gentle and respectful ways that he was dying.
You have been incredibly kind and helpful to write so openly about your hospice experience. I anticipate that one of my biggest struggles, should I have circumstances to allow me hospice care and not a sudden death, will be to allow my perspective about integrity, dignity, and autonomy to adapt to a decline in my health and independence. And to let go of what may be rigid ideas about what it is to have meaning in one's life. And to remind myself that one can heal into death. It is comforting to me to know that you see "healing is still happening and that my life still has meaning. I'm still contributing to the greater world good in a variety of ways, though I'm pretty much confined to home and limited to a small number of visitors...." Like you, I already strive to have deeper authenticity in my relationships with others, which at times can be problematic because not everyone in my immediate circle wishes to have that. So I keep learning the lessons of allowing my "truest self" to be seen, even in the midst of circumstances that may not seem to support that or those that actively resist it.
By the way, you wondered about how hospice programs handle admissions of people who have limited or no means to pay for services. I've seen and read about a great deal of variety there. Some programs work out sliding scales based on a person's income, others use donations to their hospice programs to pay for care for those who cannot afford it, others set limits on how many "indigent" hospice clients they may take over the course of a year, others provide care regardless of a person's or family's ability to pay, and others find ways of rejecting a person for admission based on one reason or another but allegedly not because the person does not have the ability to pay. (The latter happens at one of my community's better known hospice programs, where donations are collected but not use to pay for "indigent care.") And while it is true that many private insurance companies model their hospice benefit package after the Medicare model, some do not. They may cap the hospice benefit, or contract with the hospice program to provide certain services but not others (toss that holistic care model out the window!), or even reassess and reapprove (or deny) on a one to two week basis for the length of time a person needs hospice care. There's variation in that area as well.
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Oh Rosevalley, things seem to keep going from bad to worse for you and you're right, intractable vomiting is a game changer for you and would likely be for me too. I'm curious about what and how it's changed your game, Rose, because I really don't know how you did things before you stopped eating 8 weeks ago. Nor do I know how you've changed.
I like to think about what I might choose to do if I were in your situation or that of any of the dozens of others I've known more close up and personal.
Rose, since we're both in the peritoneal mets, ascites, implanted drain club (I think there are just two of us here now), I've asked myself what I'll probably choose when I most likely face vomiting and GI blockage. I've already experienced these with my rare genetic condition and I know how painful and distressing they can be.
Since my body is already in a state of breaking down - cachexia (loss of weight and muscle), sleeping lots, increasing pain, edema, nausea and other symptoms, I do feel like this D&D topic/thread is the best place for me now. Even before coming here, I chose to stop pursuing curative treatment and to enter hospice care.
The beer truck is bearing down on me and I see that my time here is limited.
What I think I'm likely to do with any big game changer (vomiting, seizures, other intolerable symptoms) is to stop and take stock.
I'm talk with hospice about symptom relief and if they really couldn't do anything else for me and I couldn't find or think of any other options, I'd ask, "Is it time to just stop altogether?"
I'd also talk with my active, local chapter of Compassion and Choices about other less known options.
If my body is rejecting food, I will ask myself, "Am I dying because I'm not eating? Or am I not eating because I'm dying?"
This slide show really helped me to understand the difference Food the four letter word in End of Life Care
Voluntarily stopping eating and drinking (VSED) is a viable option for many, because most dying people take 10 or less days to die because our bodies are already headed in that direction.
If I didn't feel I could wait out the ten days, I'd ask about terminal sedation, to be taken to a level of consciousness below total misery.
Finally, although I'm so very interested in the dying process and look forward to being there for the big event, I'd consider California's newly approved aid-in-dying law and whether it would be a right next step for me.
Of course, as Brenda says, I won't know until I'm actually there. But I think I'm likely to die as I've lived - slowly, contemplatively and not too aggressively.
My oncologist likes to say that many of his patients find themselves grasping at straws or razor-sharp blades when facing death, in spite of their early equanimity.
Readers of this topic/thread, thank you for caring for us. I'm so glad our experience helps you reflect on what you may do in similar situations. No two of us will experience, choose or do the same things, that's the beauty of our uniqueness. There are so many ways to proceed. May each of us discover what feels right to us, makes sense, meets our needs and those of our loved ones.
May we live and die with as few regrets possible, with peace and ease of well-being.
sending healing wishes for all, Stephanie
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I hope I didn't offend Rose or anyone else on this thread with my comment about my friend Susan's experience with hospice. It wasn't my intention to step into the middle of this thread, but only to give my friends experience with home hospice care. Kindest thoughts to all, GG
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I was so tired when I wrote my last post that I failed to mention how much I appreciate those of you who recently have added their voices to this long-running conversation: Bon, 208Sandy, Nel, Lulubee, Steelrose, GatorGal, and GG27/Dee. Dee, I am sorry to hear of your loss of your dear friend Susan, and I am relieved to know that she received wonderful hospice care. (Yes, I do believe that word fits perfectly well when the care meets someone's needs at end of life.) I imagine that your friendship with her will bring you gifts the rest of your life.
From time to time BCO members write me privately to ask about or comment on issues raised in this D&D thread. With regard to my comment about how our end of life choices may evolve over time and may even surprise us when we reach the point when certain decisions need to be made, I would like to add: If someone ultimately makes decisions that she previously thought she would not make, I hope that person does not feel embarrassed or ashamed or judged by others for doing so. Living while dying/dying while living is hard enough without having that burden added. In lovingkindness to all who visit this space....
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GG, I just read your post after my post was submitted. Your comments seemed appropriate to me. Please let me emphasize: You have every right to be here and to share your thoughts, just as everyone else does. You seem thoughtful, compassionate, and respectful. I hope you will contribute to this topic whenever you'd like. I imagine there are others who feel the same.
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Thank you Brendatrue for reassuring me that it was ok to post. I read this thread almost everyday because I know I will one day need the wisdom that you all have shared. Kindest thoughts, Dee (GG)
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Few things offend me. I can only think of one tone/thread here that i find offensive and I have said my peace about it. I haven't changed my opinion about it, but peace is important. No one's shared experience if it is genuine and heartfelt should be discounted or hidden as long as it's posted appropriately sensitive to where others are in the mets/ dying process.. Your experience is what it is especially in hospice. Experience and options and "what helps and didn't'" are why BCO exists. Sharing information.
I knew when I visited my Dad for the last time that he was dying. I saw the state he was in, the meds, what he could tolerate fluid wise, the MI, stroke... it was a train wreck of symptoms. I argued for hospice, which Dad wanted, and my brothers didn't. He died 17 days after hospice came in. It was time. He knew and no one else could let him go. It was an ugly confrontation with brothers and I fought for my Dad and Mom. Mom wantd what my Dad wanted.
Now I still feel well enough on some fronts to talk and try to finish a few things I wanted to leave the kids. I almost wish I hadn't started them since they are causing me anxiety getting them finished.. or not finished cause I am to weak and puky to finish them. I wanted to try the faslodex to see if it bought me a little more time to wrap up with the kids. Maybe I am trying to hard. need to let go. There have been enough miserable days to sink my resolve. I would like to be the "exception" and either live a little better (less N/V more energy) during this time or die well in my sleep.My kids do not want me to die and just refuse to accept it. DH sees the misery and is getting better.
I do feel my body is just winding down. Enough works to putz a round a little but I sleep a lot, no energy. No interest in food just water, which sits hard - takes to long to go down and reflux. Normal saline sustains me. The ascites is about the same. My labs were drawn today along with my markers and we sill see what the body and kidneys think.
Love to all on this path we all travel. Readers and visitors, thinkers and those preparing for the last journey... welcome, share. We learn from each other. I learn from you.
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Oh dear Rosevalley,
I woke in the night with a start and nearly dragged myself to the computer to apologize for ay offense from my confronting reply to you, asking how your game had changed. I was mostly talking to myself in my reply, because you have been such a steady teacher and good guide to me since I started writing at bco. Your first response to me in a PM was, members of the D&D topic/thread die. I took that as a challenge. Can I handle falling in love again, especially knowing you/we/I are likely to die? And most of us will never meet in person.
Although our mets are in the same places, our constellations of symptoms are different and we handle them differently, based on who we are,what resources we have and how we problem solve. Both of us have pulled so many survival rabbits from our hats, because we've self-managed our care so incredibly well for so very long (not that those who've died weren't excellent in so many ways - they were too!). We've come to expect the miracles, to be the miracles.
What you're going through now, I'm likely to go through later. So it helps me to reflect on how I might approach it. Just like I had to decide to come here and fall in love (am thinking of how desperately I wanted to save Torridon from drowning), I want to know as much as possible about what what may lie ahead for me. I also want to know how I can help, not hinder your process!
Rosevalley, thank you for forgiving me for asking about how your game has changed. Thank you for teaching me about daily draining (I've drained over 350# of fluid from my abdomen in the past 5 months - it's easier to take it a liter at a time than two liters). Thank you for sharing by viscerally showing us how this is unfolding for you and your family. Thank you for telling us about your mixed feelings and evaluations of what's happening for you now. You continue to lead the way and we continue to hold you in wonder, in love and tenderness.
I am doing the similar things - looking, evaluating, wondering and sleeping a whole lot. The sleeping is a mercy. And when I sometimes wake pain free in the night, that is a mercy too.
The crescent moon outside my window is scooping up the last of the dark night before the coming of the dawn.
It is a silver lining of the rain cloud of pain and nausea that force me to rise for food and meds. The dark, the quiet, the stillness of the air.
Rosevalley, we too are leaning into a sunny weekend. May it bless and kiss the plants. May the warmth melt my skinny limbs. May we both be touched by sun and moon and stars that shine on all of us. May we remain connected in loving kindness and forgiveness.
Your friend, Stephanie
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Rosevalley, I really enjoyed the film A New Understanding: The Science of Psilocybin and have been interested in the "psychedelic at end-of-life research" for many years. I even tried to enroll in the UCLA study, but they closed it before I got there.
You might also appreciate the films and information available at The Heffter Research website. I'm quite convinced that our hearts and minds can open while we're still alive, allowing us to face death with greater awareness and acceptance. At least, I'm betting my life and death on it.
warmest healing wishes for all, Stephanie
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Bon that's a wonderful idea.
Ive done some of the hard paperwork but still have more to go. Really want to start and finish their scrapbooks. It's been my New Years resolution for several years. This year new mets have gotten in my way. Don't know if I'm more determined or resigned to never starting.
Rose. Hope you have some peace tonight.
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oh, the stress we put on ourselves. I'm resigned to never finishing my adult chhldren's scrapbooks but am dedicated to finishing four year old granddaughter's 1st year book. If I've worked all this time, what makes me think I will? I will. And when I do, I'm getting rid of all the paper and supplies and will not start another. It will be shutterfly books from now on! Not enough energy to start something new. No apologies
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I know I know. However mine are still fairly young and adopted. I want them to have tangible reminders I loved and wanted them. That I wasn't always tired or sick.
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zills--that's the kicker right there--for me too at least
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Zills, would it be easier to do shutterly books filled with pictures of you and them? I've been thinking of that. One book for each child just with pictures of me and them. "Grandma and Emmy", "grandma and Ella" etc. you don't really have to say anything if that takes too much time. If you date the photos shutterfly will even put the book in chronological order for you. Then you could personalize each with handwritten letter in the front cover. We need to make things easy for ourselves. If You have digital photos this is pretty easy. My youngest were newly adopted the first time I had cancer. It is rough, honestly. I get where you are coming from
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I find this meditation from the poet David Whyte to be both astonishing and reassuring:
David WhyteI am not a despairing person, and certainly, in the buoyancy of my present days I feel very, very far from that apparent state of giving in and giving up, but it was not too long ago, telephone pressed against my ear, in the late night anonymity of an airport hotel room, hearing of the sudden loss of a close friend, that I felt the quiet hand of despair rest on my shoulder as she turned me resolutely and fully to look her in the face.
In that giving over I felt for just a very few moments as if I had on my tongue, the unadulterated and unwanted, pure malt taste of devastation and despair. It was a kind of fainting, and indeed I found myself a moment later, kneeling against the bed. I was astonished at the physical nature of the prostration, as if the body needed to give up holding its own weight, as if it simply couldn't hold its own weight anymore, as if it demanded to fall against something other than its own self; the way the forehead, that outer representation of the way we lead ourselves in thought, in looking for something or someone to lean itself against, simply did not want to be the one leading my thinking or knowing anymore.
I was even more astonished to feel in that depth, how much of a different form of shelter and care waits for us beneath the outer forms of giving up, how that hand on the shoulder becomes a hand around the shoulder, and how a strange and marvelous mercy becomes available to us only in the depths of our sheer vulnerability, as if in stopping a certain way of holding the world we can allow ourselves to be held ourselves, in a different way.
Despair it seems, asks for its own difficult form of faith, extends its hand in a form of friendship we do not at first comprehend. It is as if, as human beings, no matter its outward form, we find it impossible to live in the world without some sense of home; that even in despair we are able to find another beautiful form of shelter, a home at the core when all outer homes have seemingly, been stolen away.
Winter Lake
Grasmere, Cumbria, December 20150 -
I've been reading this thread to learn more to help my mother and my neighbor. https://community.breastcancer.org/forum/16/topics/840696 I may be able to contribute my experiences with hospice.
Our beloved Nana (hubby's grandmother) was living in the memory unit of assisted living. She had outlived her children and we were taking care of her. She was hospitalized for a bad bout of CHF, and a resident nephrologist (kidney doctor) was insisting that we put her on dialysis. We refused. It would have meant surgery for the port, and then 3 or 4 trips to a dialysis center each week. Her kidneys were still putting out some. The social worker approached us about hospice. Nana's body was shutting down, but she was still alert and happy. We brought her back home to the memory unit, and she had about 8 weeks with an excellent QOL. She enjoyed visits with the family and the activities of the unit. She slowly started eating less and sleeping more. On Easter Sunday, we brought some goodies from our Easter dinner. She had a little taste of everything. On Tuesday she was tired and wanted to go back to bed. On Wednesday she didn't want to get out of bed. She slept more and more. On Saturday her breathing became unsteady, and she died in her sleep that night.
Hospice services were amazing, medications, Boost, and her Depends were all covered. Hospice also counseled us, the family, about the process. There was a booklet about what to expect, including loss of interest in food, and terminal breathing patterns. My friend Ann battle mouth cancer through numerous surgeries, rads, and chemo. In August we had a lovely visit, she was so full of life. Then the cancer came raging back. She went on hospice in early September, including palliative pain nurse and nutritional supplements. A hospital bed was put in the living room, the center of their house. She held court there. The pain got worse. She stopped eating. Palliative measures were not enough. She did have sedation eventually. While she was on sedation, I continued to visit her. I updated her on the latest news from the choir, where we had sang together for so many years. She & I had done so many weddings together in the past, she as singer, I as flutist. I played my flute for her and she sang a few notes, even through sedation. She was at peace, and died 4 days after her youngest child's 21th birthday. Rosevalley, and others, I hope you find the resources you need. Rose, I wish there was a way to stop the vomiting. much love and prayers,Mominator0 -
I am reading this book called "Wide Awake" A Buddhist Guide for Teens by Diana Winston. I wanted to find a book that was accessible for my DD3 but being deaf the English is pretty out there for her. Still there is so little available that isn't kiddie based or so philosophical and difficult to decipher the English that a Deaf kid whose second language is English and thinks in ASL, would have a hard time with the concepts. So I am reading the book and wondering how to condense some concepts. I want her to understand we don't die as much as change form. (my concept of death.)
I came across a poem the author mentioned when discussing the concept of "grasping" and the suffering this grasping causes people. I thought it was worth posting:
William Blake
He who binds himself a joy
Does the winged life destroy;
But he who kisses the joy as it flies
Lives in eternity's sun rise.
Living in the present moment, beautiful moment and accepting reality as it is, not as you wish it to be, brings peace. I find when I fight against my illness and wish the discomfort, N/V and bloating, ascites and limitations were a thing of the past - I suffer more. When I accept it is what it is and can not be helped, I can move on or through the misery. Grasping at how things used to be = pleasure and old precancer days. That reality is gone. There is peace in this perspective realignment.
I didn't not puke once yesterday. (still took zofran 2x) I drank milk and ate vanilla ice cream and sipped water. I also tried some CBD oil under the tongue. It's made from pot, but has no THC, tincture. It appeared to help. But I have only had 2 doses so can't really say yet. I will try to help myself as this seems reasonable.
It is sunny and mild today. The Indian plum is ready to bloom, daffodils are up, primroses up, tulips peaking out of the soil and my Lenten roses are gorgeous! Lilacs have big old fat buds. Spring is my favorite time of year because in Oregon it is so mind blowingly gorgeous. When the Rhodies bloom and the Camillias, peonies and irises my imagination and heart take flight. Heaven for the senses.
Lovingkindness to all. May you be free from suffering and find peace.
rosevalley
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Oh Rosevalley, may we continue to find ourselves in good places, even amidst the suffering of our precious bodies, our envelopes that allow us to experience this precious world and to love!
I don't have time to write a real letter, but here are two resources for children's literature that I shared with a friend in similar circumstances:
https://www.brainpickings.org/2015/03/23/best-childrens-books-death-grief-mourning/
http://www.griefwatch.com/topics.html?type=9
If anyone knows these books or learns more, please send book reports. Other titles welcome too!
I'm now single and have never been a parent. Most of the children in my life have become adults, so I don't know what's good for which age group or which situations.
much loving kindness for all, Stephanie
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Ma111 wold have loved that (2Athena2) and I am sure is smiling down from where ever she is that her words have meaning years after her death.
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Hi Athena,
Welcome back to the D&D topic.
I'm glad you feel comfortable enough to post here and to share with us!
Athena, since we don't know you yet, I'd like to know why you chose this topic from among the hundreds offered at bco.
Are you too confronted or soon to be confronted with your own mortality?
How are you doing/feeling/reacting to it?
How might our support be supportive of your needs?
I think of this topic as the inner, inner circle at bco. There's the wide outer circle of All Topics for everyone who even thinks they or a loved one might have breast cancer, then an inner circle of Stage IV and Metastatic Breast Cancer ONLY (all caps!), then this topic, A place to talk death and dying issues. ma111 started this to be a safe place for us mortals to share.
In my earlier response to you, I didn't realize that it's acceptable to share intense feelings here, it's been pretty mellow since I got here. So, I apologize if I did a "tone police" on you, Athena. Thanks for returning.
And I look forward to hearing more from you.
warm, healing regards, Stephanie
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https://m.youtube.com/watch?v=h3lWwMHFhnA
I hope this works. Ran across this song the other day and fell in love. Hope you enjoy
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Kjones that video was lovely! Love the visuals, music and words.
I have to report after tossing my cookies multiple times today.. zofran.. still feeling like crap. I went for the CBD oil and used 6 drops this time. I do think this stuff works for nausea. I feel much better once it kicked in. So for those of you who have access to it... try it! I got citrus and don't care for the taste. It comes in peppermint, which I will try next. Desperate for any relief I can find.
Be well as you are able. May you all be free from suffering and be happy and at peace.
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Dang. Was hoping the drops would give you more than one day! Did you do ice cream again?
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