A place to talk death and dying issues
Comments
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What an interesting discussion this has been over the past weeks. I've often thought about what a "death with dignity" might look like or feel like: perhaps as peaceful mentally and emotionally as possible, being in physical comfort, having those who care for me around, likely having a hospice team providing care to relieve some of the burden of care for my husband and other close family members, and trusting my body, heart, spirit and mind to do whatever is natural in dying and not to resist what is inevitable. I hope for the opportunity to end my life if that is what I choose and for that ending not to be a burden to anyone who cares for me. I don't think ending one's own life as a conscious effort to avoid further suffering and physical, emotional, and mental pain--"self-directed death," I think it's called--is suicide. I realize that others may disagree with what I believe, and I respect their right to do so until they try to interfere with my right to act on my beliefs. Like many, I am more concerned about the process of dying in terms of needless suffering (for example, through inadequate care and pain control) than I am about death itself. And surprisingly perhaps to some, I actually don't feel distressed over suspecting that I have this one life only and no more. Yes, I hope that my life source or energy or whatever we might want to call it may be transformed in some way into the energy of the larger world around us, and that's a comforting thought to me. What is more distressing is leaving behind loved ones, especially my wonderful husband, who I know will grieve but I also expect will be more resilient that he thinks. I know that living, dying, and leaving behind is a part of life, but leaving those you love is so incredibly challenging that sometimes I feel overwhelmed by the prospect.
Some thoughts about hospice.... I get concerned when I hear about doctors reportedly telling their patients they are "not sick enough" to receive hospice care. Perhaps that is true, but overall doctors, and especially MO's, have been shown to be very, very slow to refer to hospice. Many of them still operate under several misguided beliefs, like hospice care is best provided "just at the very end" of life--days and weeks. Many still believe that telling someone that it is time for hospice is "taking away hope." How paternalistic! If I were at a point in time or illness when I suspected that I might need hospice care, I would ask my doctor, "Would you be surprised if I were dead in the next 6-12 months?" If the answer is no, then I think it's time to be evaluated by hospice. Some people don't realize that you don't have to get a doctor's permission to receive a hospice evaluation; you can call a hospice provider yourself. You do need a doctor to be willing to oversee your hospice plan of care, but that can be the hospice medical director, or your internist, if the MO refuses and you meet eligibility criteria. If you live alone, it does not mean you cannot receive out-patient hospice care, unless you are not safe to live alone and need assistance in meeting your own care needs outside what hospice provides. Also, you have to be willing to work with the hospice team to develop a plan for how you will receive care when you are no longer able to care for yourself at home. If you want to stay at home as long as possible, try to work with a hospice program that has both out-patient care and an in-patient/residential program, which means that you are more likely to obtain their residential care if there is a waiting list than someone who is not receiving care in their out-patient program. Be careful of hospitals that have a few beds designated as their hospice "program," because many of these have staff that are not adequately trained in hospice care and the "programs" exist to reduce the hospital's mortality rate. (That is not always the case, but it does happen, and should be considered when choosing hospice care.) And when choosing a hospice program, ask if they have a policy on terminal sedation, if you think you might want this option. If they do, then ask if they have staff who are skilled in providing terminal sedation, in which a person is basically kept in a sedated state until the time of death. Some programs offer terminal sedation for management of physical suffering only, but others offer such sedation for psychosocial suffering as well. If you want more information about hospice, consider sites such as www.nhpco.org or www.hospicefoundation.org . If you want more information about options regarding end of life, you might also want to check out www.compassionandchoices.org, a group designed to help people plan for end of life, including quality of life and choosing and planning for one's own peaceful death. We still have options, and we need to remember that we can remain empowered through making decisions that are right for us and choosing caregivers, including those who hold power of attorney for health care, who respect our end of life decisions and wishes.
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Hi ladies, dropping by before I drop off......to sleep that is💤. I've been enjoying your posts and as a member also in my leaky boat heading out to sea though I'd join in...
I have a fairly solid mindfulness /meditation practice - but I cheated. I used audio bought on iTunes designed to "take me there". Folk with lovely voices talk and I follow their instructions. Belleruth Naperstack (sp?) has a great one for use while dying. Her trauma ones are good too. And her "get to know your companion spirit " stuff has me talking to little people to get their advice.....I am at the very least often very amused by my efforts.
For me meditation is managing the feelings that make me miserable and rediscovering my awesome self... And by extension awesome everything else. No more..... Although I figure I must have totally screwed karma in my last life so anything I do is going to help in this life. And I do feel proud of my bald head and Buddha belly. At least I'll look the part.
But I am choked that the magic mushroom clinical trials for near death anxiety have not become main stream here at my cancer centre. The research results to date have been fascinating - who needs meditation if one good shroom will deliver.....will let interested ladies Google those - I'm not advocating the use of illegal drugs here 😱
Anyway, night from the north.
Sophie
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Okay, a link, not fair to leave u without at least one.
www.pri.org/stories/2014-11-27/could-magic-mushrooms-become-new-drug-hospice-care
Brendatrue, thanks for your detailed hospice pointers. I'Ve got my team in place already. Had a couple of sudden crises which brought home that sometimes you don't get a lot of time to figure stuff out. It's helps me feel that I have extra protection at my back and mine have been brilliant when I've done the transitions from hospital to home. I don't stress about questions like should I go to the hospital or not - they send out a nurse and we decide. I do worry there might be insurance implications though. You have to be "terminal" officially and it changes access to things like travel insurance dramatically.
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Brendatrue- I really like your comment "would you be surprised if I died within the next 6 to 12 months?" That's an excellent way to advocate for hospice evaluation and to line it up - to push the discussion. I thoroughly agree most MD's start the discussion WAY to late. My Dad died 17 days after beginning hospice and most patients don't get the full benefit. Too many are afraid of feeling that they "gave up" or cheated themselves out of a little more time. I wonder what would happen if there was a greater push for palliative care in tandem with hospice like a relay. I wonder if people would be more supported and less anxious. I feel that it's an individual choice and should be in the patient's hands.
It would be better for our country as a whole, less money and effort spent making folks miserable doing more treatment then they want or signing up for marginally beneficial treatments. I have seen so many old people doing hard treatments and suffering through them. It's one thing to sign up for all kinds of things when you are young and another thing entirely when you are pushing 80 and older! With that said I have seen some fantastically well preserved folks in their 80-90, really in great shape, mentally and physically. I have also seen some train wrecks in their 50s where they looked 90! It's all relative, huge variation. Most of the folks on this board are so young it's just heartbreaking, blind sided by the beast.
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I have a friend whose husband died at home a few years ago and she said the same thing about hospice: It came too late. Even though her husband had pancreatic cancer, had had several very major surgeries, couldn't eat, and was miserable, the oncologist kept holding out hope for chemo. Her husband had one chemo and said, "No more." Finally, hospice was approved. My friend felt cheated only having hospice for a few days before he died.
xoxoxox
Calico
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Calico- So you toured all the Utah State Parks? My Dh and I went all through Arches in May when the entire desert was in bloom ( yellow cactus flowers and bright red Indian paintbrush wow) and it was breath taking! We stumbled upon it, never heard of it. We were driving across country in a job transfer to California. Great trip! Kansas looked like a moon scape and the most spectacular thunderstorms in Colorado! Crazy gorgeous mountains and country. Loved it. Never got back to see Bryce and Grand canyon, Pueblo Indian ruins. Maybe we will. Have to see how it goes.
I know what you mean about being on the outs with family members. I am losing my patience and my ability to put up with people. Just sick of games and crap. Life is too short who needs to spend time with it. I am unloading stuff I have carried around for years.. here you can have it back. Ha.. But if I get chit back from folks I am through, life is too short for that.
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I couldn't agree more with all the above posts. I have been told by all my drs 3-6 months. I have already decided (*subject to change) that I don't want anymore attempts at treatment. Surgery and rads are my only options. They do as much damage as the cancer and are only stalling by months at most with SE. As I have stated before I am truly alone in this, my drs all know, yet not one has brought up hospice?? I thought (until this thread) I had to be at deaths door!I called my ins yesterday to see what facilities are covered. They couldn't tell me. I want to have things in place and have the opportunity to research, interview and visit locations in order to make the best decision for me. When I had my brain surgery and had to go to a rehab, my brother was out and made the selection. I am sooo not kidding when I tell you he made the choice based on the Sales person being hot! The facility had 10 health code violations posted, horrible reviews. I had to clean the toilet when I got there. It took 10 Lysol wipes before it didn't have crap(literaly) on it! I had to fight for my daily meds. I was there almost 3 weeks and was allowed only 2 shower days. My roommate needed help, I would push for assistance and nobody would come for over an hour! It took me walking the halls with my walker to get someone to come help her. That is not the scenario I want to encounter in my last days!
Made calls about donating my body.... My BMI is too high. Which means I am too fat for them to accept! Now I am going to need to diet to lose 20lbs! WAAAAH! =( I would think they would want a BC with brain mets for research no matter the tushy size! lol I have been on a steroid that causes weight gain.... Maybe I'll drop that to help drop the lbs?
As always, we have to be our own advocates while we can. Thanks for the links on hospice Brenda!
Rose, I feel horrible saying it, but I always think "Why?" when I see elderly going through such harsh treatments. I know I sound mean, but what goes through my mind is, "You've already had quantity, what about your quality?" I'm 44 and am more concerned about quality.
Off to eat an apple and do jumping jacks..... Or maybe just eat apple jacks! lol
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A few months ago I read a fascinating article about using LSD in combination with psychotherapy to alleviate anxiety and "existential gloom" for those at the end of life. According to a NYTimes article, "Most of the subjects had terminal cancer, and several died within a year after the trial — but not before having a mental adventure that appeared to have eased the existential gloom of their last days." Here is a link to the short article, if you'd like to read more. http://www.nytimes.com/2014/03/04/health/lsd-reconsidered-for-therapy.html?_r=0 Here's a quote from a different article: "Neal M. Goldsmith, Ph.D., a New York-based psychotherapist and author of the book Psychedelic Healing, explained the significance of this research to HuffPost. 'It has long-term implications for society. In the short term it’s going to help patients, people. So the question really becomes, what’s the benefit of a spiritual epiphany or relief or relaxation? And what’s the effect of that on a dying patient?' he said. 'We’re going to be a better society once we learn to reintegrate psychedelics. It both requires changes in society and it creates changes.'" Refer to http://www.huffingtonpost.com/2014/03/06/lsd-anxiety-study-psychotherapy-_n_4906596.html if you want to read more there. (That article also mentions the research on psilocybin.) From what I read in the article of a few months ago (to which I cannot find the link right now), it takes a very skillful psychotherapist to assist the person who is willing to embark on an LSD initiated "mental adventure" to have a meaningful experience. I hope research continues.
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Oh Caryn,
I did not know the details about your sister's final issues....How horrific and how true that cancer does not care...I share so many commonalities with you and your views that I always perk up when I see your posting...and you are a very very special gal. hope you have lovely days ahead in this last month of 2014. Carolyn from Music City
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Rosevalley, your cross-country trip sounds terrific! Yes, Arches is wonderful. I hope you can get back to Bryce and the Grand Canyon, etc.! My best friend and I had a driving tour of New England all booked for last year. I knew I would have to go back on chemo and figured it might be my last trip. But guess who else turned up with BC? My best friend, about 2 weeks before we were due to leave. We cancelled.
My encounters with family members the last 10 years have been truly astounding. My eldest sister and I had a split in 2005, I was diagnosed in 2006, she got bladder cancer at 64 in 2011, and died in 2012. Even crazier things have happened since, but I'll spare you.
I'm in California close to the southern entrance to Yosemite.
xoxoxox
Calico
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Hi, Tam, I've talked to my husband several times about the dilemma of when to stop treatment. For example, my worst symptom is my shortness of breath. I don't even know for sure whether to blame this on COPD, the Abraxane, or the cancer, or all three. So if I stop treatment, and my shortness of breath gets worse because the cancer progresses in my lungs (let's say), I'll be even more miserable, but at least it will be a misery with SOME KIND OF AN END DATE? What to do . . . . . what to do . . . . .
Maybe that's the key importance of getting into a hospice program. I gather their whole point is to keep one as comfortable as possible.
Sending prayers and good thoughts for your finding the perfect landing spot.
xoxoxox
Calico
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Calicocat- Lucky you to be near Yosemite! I saw picture on the news that the falls at the park were running again because of all the water California was getting. I am glad they are getting the rain but it does kind of look like too much at once- sorry about that.
I am sorry about the fall out with your sister, but I totally get that. I am so disgusted with everyone in my family that if I could divorce myself completely I would. Things kind of unraveled after March of 2013 and have spiraled down the toilet since. I am so disgusted and angry that all I need is poo from anyone in my family and I write them off. Done. Not very kind or forgiving but I have been hurt enough and am putting up with no more. Life is too short. Won't miss them anyway after the last couple of years. Amazing how my perceptions of what kind of people I thought folks were was so wrong! Moving on. Sticking with my kids and pets. Dogs are wonderful beings - they never hurt you like people do!
I think the biggest problem with chronic cancer treatments is when to call it quits. When are you just going through the motions and not really enjoying things. What happens if you just end up stuck in this grey zone.... fog. I sometimes feel jealous of the people that have all choice removed and just die in their sleep. Lucky them. Just talking too much... tired.. got up at 3 and didn't get back to sleep until 5..
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Hi, Rosevalley, it is about being hurt enough. I literally couldn't conceive of my sister doing what she did unless I was totally disposable. It's heartbreaking to find a thing like that out, and I totally understand not wanting to get near the fire again.
We are in the Sierra Nevada foothills and are getting some, but not too much, rain, but I see that southern California is having problems.
Hope you get better sleep tonight, Rosevalley.
xoxoxox
Calico
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my sister is the best! I don't know what I would do without her, truly. My daughter, on the other hand, does find me totally disposable and I am totally getting used to it. I find so much less drama and stress in my life. It makes me sad on one hand because I always dreamed of having a close relationship with her. It is just not meant to be. I pray for her to find truth and peace at some point in her life. I have found it and am content with the way things are. I am lucky enough to have other close family members, good friends, and of course, these boards
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I experienced that hurt and disappointment from my "friends" where I used to live. I couldn't get out of their fast enough. Now I live with my mother. There are challenges but she definitely cares.
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Hey there, gals,
I read a lot on this thread about how people aren't scared of death,but of dying. I've been thinking about that a lot lately.
I've had couple of times in my life where I was close to death. Both times I was in the ICU and barely conscious. Both times related to cancer, and both times the doctors did not expect me to live.
I know others may have different experiences, but what I learned was that when my body was that close to death, it was extremely peaceful. I knew there was a chance that I could die, and it didn't bother me in the slightest. I was so weak I couldn't move, and I didn't care. I had no visions of the afterlife, no visitations from those who had passed on, etc. But I felt them nearby, and it was so relaxing and comfortable.
I don't know (and I don't think) that everyone experiences this sensation when they are near death. i'm sure some people have terrible, painful deaths. But I just wanted to point out that it is possible to have dying be a peaceful experience.
When my father died, he had lost so much weight that he looked like a skeleton. He wasn't eating and had a fever. The hospice woman explained to us that this was normal for a body that was shutting down. His body had lost the ability to regulate his temperature. She explained the various steps that occurred when a person is dying, how it's not necessary to force food or medicine on them, that usually they feel no pain, but if they do, it's okay to give pain meds, but often the patient doesn't want them. My dad was in a coma for about 24 hours before he passed, and I have always felt that he was communing with angels who were preparing him for crossing over. My brother mentioned that we often talk about the miracle of birth, but really there is also the miracle of death, how our bodies know exactly what to do to shut down.
I know not all of you would believe that. I just thought I'd throw it out there for those who are nervous about the process of dying. Again, I don't think it's this way for everyone, but I do think that dying may not be as horrible as we often expect.
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Thank you, Raro, that's very reassuring. May we all have a peaceful, painless death surrounded by that which comforts us.
xoxoxo
Calico
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Raro, thank you for your insights. That's very beautiful.
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Beautiful Post raro! Thank You for sharing!
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I am not stage 4 and have really debated posting here, so please excuse the intrusion. I hope so much it's okay that I share this with you all. If it's not appropriate, please let me know, and I will delete the post. I was hoping my experience may give some peace for those fearful of pain and dying.
I was close to death and it was unknown whether I'd survive or not. I was in ICU for over three weeks. What Raro described is so close to my experience. I was vaguely aware of voices and people around me, although I had no concept of time. I could feel my family even though I was told I was not conscious. I also felt a tremendous amount of peace. I don't know if it was pain medication or not, but I was in no pain in that state. On some level, I felt like I had the choice to embrace the feeling and let go.
After that experience, I no longer fear death or pain at the end. I often wonder if that feeling was like being in the womb. I don't remember much of it, but I will never forget the feeling of peace, rest, calm, comfort and familiarity.
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I am so grateful to all for sharing their stories, insights, and concerns. This topic has been one of interest to me for quite some time, and I have gathered various resources over the last years to help both myself and others. Here is an online resource that I am still exploring, and I thought many of you might like to explore as well. One of the segments is offered by a Buddhist Chaplain, Steve Spiro, who has created an Advance Directive for Conscious Dying (http://www.ttbook.org/series/death/information-conscious-dying). In that document he asks these questions:
The People Who do you most wish to be with you? These are in your inner circle. Are there any people you do not wish to have present? Name those you’d like to personally contact by phone, internet, or other means regarding your situation and condition. What message you would like to be sent out to friends and family upon your death? Would you prefer to have others present with you as much as possible, as little as possible, or somewhere in between? When your time of death comes, would you prefer to be alone, or with company? Would you like someone to conduct vigil for you so you are not alone? Would you like to appoint a person or persons to be the facilitators for your spiritual care? Are there any relationships to which you want to bring to resolution through forgiveness, honesty, embracing, or other means? List those to whom you would like to express your blessings, advice, gratitude, love, etc., in person, or by other means.
The Setting Describe the physical setting in which you’d prefer to die. Describe the details in the room. These may include lighting, decorations, photographs, artwork, incense, flowers, furnishings, etc. Are there special garments, jewelry, blankets, wraps, and the like which you would like yourself and/or others to wear?
The Content List readings, poetry, scripture, prayers, which would be helpful for you. These can be read live, or be pre-recorded and played as needed. List some of your favorite songs, chants, and music which could be performed live for you or be prerecorded to be played as needed. List other activities which could be useful to you, such as massage, energy work, visualizations, communion, movements, postures, art-making, and so on. What is your desire as far as the optimal level of pain medication for you? To what degree are you willing to sacrifice comfort for awareness? At what point do you want pain medication if it begins to interfere with your level of consciousness? How strictly do you want
your wishes to be adhered to by your loved ones? Do you want them to do exactly
as you say, even if they may feel uncomfortable? Do you want your loved ones to
do what brings them the most peace, or somewhere in between?Your Intentions Describe your views on death and dying. What would you like your loved ones to know about your life and death? You could write this as a message to your survivors.
This is just one example of the abundance of information that is offered on the Death (A Five Part Series) project offered by "To the Best of Our Knowledge," a program presented by Wisconsin Public Radio. Here's the link: http://www.ttbook.org/series/death.
Lately I have been struggling physically and psychologically with my health challenges. Exploring this type of resource helps me to stay focused and brings comfort in a way others might find surprising. I hope many of you will find it helpful and comforting as well, although I know some may find it unsettling. But, then, many challenges we face as we deal with serious health matters and the prospect of our mortality can be unsettling. That's just life...and death, I guess.
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I Heart You...Brendatrue.
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Hi, Brendatrue, thank you for the wealth of information. "To the Best of Our Knowledge" is a great program.
I saw what happened when my brother died. The atmosphere in the room was more like a party. I was horrified. He was out of it and I can't believe he appreciated all the hubbub. We left for lunch and he died while we were gone. I always felt like he needed alone time to make the transition.
I've been clear with my husband that I do not want a cast of thousands at my bedside. My spiritual counselor and maybe a Buddhist priest is all. Everybody else - OUTSIDE THE ROOM! Just too gut-wrenching to be surrounded by tearful faces wanting some response from me like everything is normal. It ain't normal, and people can get very weird when someone is dying, busy tending to their own needs and not the needs of the one who is trying to leave the planet. I understand how it happens, but want to avoid it at all costs.
xoxooxox
Calico
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Check out 5 wishes as well a living will that also discusses personal, emotional and spiritual needs as well as medical. LFor me , some combo of the two.the one above and 5 wishes
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I'm currently updating my advance directive using the 5 Wishes booklet and the above. I've decided to use one of the formats accepted by most states then have a page that lists "preferences." My preferences will list things like who I want to be with me (and those I do not want to be with me), my goals regarding pain management and conscious awareness as well as ability to communicate, other goals regarding my care, music I would like playing in the background, a poem I would like read to me everyday once I am no longer fully present, how much/little I want to be touched, etc. I am focusing on "preferences," because if for some reason my husband is not able to manage each and every aspect 100%, I do not want him to feel guilty. He and I have had many talks about my directives and my wishes, and I trust him to do the very best that he can, recognizing that sometimes events happen and situations arise that make it hard if not impossible to create the most preferred situation. He is also supportive of my plan to be cremated, to have no memorial service, and to write my own obituary, in which I will ask others to remember me by setting aside whatever time they wish to give in order to be kind and lend a helping hand to an individual who needs it or an organization of my choice or theirs, or by donating funds to an individual or group needing assistance, or setting aside time to sit in a natural setting or other place of peace and beauty while contemplating even one small way of making a positive change in life. (I'm still working on the obituary wording. It's harder than I thought it would be!)
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Brenda - I think about my obituary often -tho haven't written anything. I know more of what I don't want - No picture, no she passed after a brave battle, courageous battle or any thing close to that. What I want is more difficult. I keep thinking I want it to say "she lived, she died, she had a pretty god run" Not one of those multi paragraph ones.A work in progress at least In my head.
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Recently, I read an obituary and liked how some of it was worded. I will do something similar.
It will go sort of like this, Mrs. M, loving and devoted wife of Mr. M, beloved mother of Junior M, treasured step mother of Mr. M's son, cherished sister of ( and then list of siblings).
Of course, real names would be inserted. I just liked the adjectives showing love and caring of my loved ones.
I will also have something said about how I lived courageously with stage iv bc for x number of years, as that's what I feel like I'm doing. You never know when something written like that may encourage another
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Dear Rosevalley,
No preaching from me since we all have to find a path through our health problems. Personally, I believe that life goes on after death. I do not fear anything except what those poor souls who have ALS have as they go through their final months. Somehow I think I will do okay for the rest of the journey. I am immensely empathetic to you and all of us. I have no answers just want you to know that there are those of us out here who are feeling your pain and sending you messages of peace and hope. Be gentle with yourself, the road is not easy and all of us know that. Blessings from Carolyn from Music City.
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Hi, ladies, I told my onc today I would like to "explore" stopping treatment with him. I wasn't sure what kind of reception I was going to get (he's really hard to read), but things went well. He said often when people ask him that, it's a cry for help (yep!), they're fed up (that's me!), and suggested I take a 3-week break from chemo, get through the holidays, and see him on Jan. 5th. Sounded like a plan, so I went for it!
He also said if I stopped treatment permanently, I'd have about a year, and it would advance in my lungs and liver (where it's hanging out now), I'd need oxygen and get very tired. He also said hospice would need to get into the plan at some point, and he would handle all of that. This onc isn't perfect, but he's very picky, and I was relieved to hear he'd take the lead on that. I love my GP who is up where I live, but his support staff is lacking.
The onc suggested Doxil as the next step (I'm on Abraxane). He said my hair would grow back and it wouldn't attack my fingernails like the Abraxane is now. Any insight on Doxil?
Thank you and I'm soooooooo glad I broke the ice with him on this.
xoxoxoxo
Calico
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Hi Ladies!
Brendatrue, thx for sharing all that great info.
This is my first time on this thread, so I didn't read every post, just the last couple of pages are all that I've read so far, but I felt compelled to add.....
I've personally experienced the passing of several very close family members, as in holding their hand. I can assure you that no death, or passing, is the same. Some are relatively calm and peaceful, some are not. There is no way to know ahead of time.
When I was diagnosed Stage 4, I immediately set out to get "my affairs in order" with a will and all that stuff. But, I stopped there. Once I'm gone, I'm gone. How my kids want to honor me is on them. But, I'm not going to try and manipulate and/or control things from beyond.
I handled my parents' affairs, and I can tell you, there is no making everyone happy. You do the best you can, as we do in life, and that is all we can do.
But, does anyone think how we talk about death and dying, how many people in life die without ever talking about it? I think about it. I think about the innocents that die from bombs, from drone strikes, from misguided political philosophies. I doubt they talked about their obituary newspaper clipping or grave marker.
Life isn't fair.
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