A place to talk death and dying issues
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bluebird it’s def feels good to have all affairs in order. One less thing to worry about.
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I haven't been doing very well physically for a long time. This last month is worsening.
I feel like everyone in my inner circle has stepped back for their own reasons. I know they will come forward again as they get a grip on what they realize is happening.
DS - that I am not doing enough through western medicine to get well. That I should not be spending time on my funeral stuff and organizing accounts. Though believe it, attorney stuff and doctor stuff took my time this month, that and being so sick.
DD - even after she asks how I am and I tell her as clearly as I can she writes in chat that she still doesn't understand how I am and what my condition is. And I wrote, really rough and on a fine line between palliative / hospice at this point but doing the best I can to get well. She has not comented further for two days.
Friend - When I was railing at the wind a few days ago about how I keep hitting the wall on answers and getting help she said.... I really don't want you to get upset with me but I really believe if you accepted Jesus Christ as your Saviour this would all turn around. (I don't want to get into beliefs with anyone, please, or what I am as far as saved or not, it's personal.) But I was really stung that in her mind I was being blackmailed by her higher power. That is the only way I can understand and though I know she meant well, it just stung.
SIL - she is not really my support system but could be. She sits back and says God healed her (though she did all the chemo and mastectomy and radiation they would throw at her) and that is the way it is. So that means in her minds eye that God is choosing not to heal me, I guess. I haven't asked - I don't believe in special favours. But that is my belief.
Hubby - He keeps saying he believe I can still beat this. As he watches me clinging to the side of the cliff. That is a lot of pressure.
Tonight on Scandal the opening moral to the story was "What do people fail to do when they are in crisis?" "Realize they are in crisis."
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BluebirdDE,
I’m so sorry you don’t have someone close to you that really gets what is going on. Is there a counselor in you palliative care that can listen? You really, really need someone to open up to. Your family loves and but their denial is hard to take. We are here.
Hugs.
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I think I am just in a rough emotional place right now. I do have a social worker in palliative. I feel like I am hearing from her that I am needing to be gently prodded to hospice. That it's okay. That I could be hospice for months or a year or more. That I can come out of hospice if I decide to or improve. But I am not giving up the choices open to my improvement and prolonging my life. The pall - nurse and I are going over the fence guidelines on Thursday. Just what equates what.
That said, my sister and my hubby have been with me through all this. I cannot be too hard on them. My sister, well, I am really the only one she has even though she has a son. And she loves me and wants to be with me for years to come too. Hubby, same.
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Bluebird, I am reading this and feel the mourning in your words. In between your words. I hurt for you.
Not to make excuses for anyone ... but I think none of us are any good at dying. Not family members, not our medical team, not ourselves. Who has practiced for the final passing? Not me. It's entirely uncharted territory for each of us. And for those who we will leave behind. I have said somewhere else that I contemplated what would be worse, dying or being the one left behind (in a marriage situation) and I think being left behind would be worse. So my Hub, knowing that one day this very situation could be ours... he is doing what he can to not allow it any mental space. That possible outcome is his ultimate terror. When I talk about what ifs, he clams up, freezes, withdraws. I think it's like being afraid of what's hiding in the closet and being forced to open the closet and look - oh hell no! Afraid of what's in the closet but you keep that door shut and you keep that creepy thing locked the hell up, no looking, no letting it out to run around and scare people. I think that's how this must feel to our loved ones. We are asking them to open the closet and look at the very worst. They are squeezing their eyes shut and screaming no.
But it does not make it easier to be you in all of this.
I would urge you to talk to someone in the hospice system who does deal with this and who might be the ear that your loved ones can't be. Not for lack of love, but at the terror they are feeling. The terrible powerlessness to do a damn thing for you - and you know they would do anything if they thought it would help! But they can do nothing. Hospice is set up for exactly this scenario.
And ... wow I can't believe I am going to say this because it just sounds insane and please, please don't be mad at me...but this about you. You. Yes, it is about them. They have a new life to deal with when you are not here. But you have a task ahead. At least that's how I sort of see it. A task. Once it was my task to be young. Then my task to grow up. Then to be a wife and mother. All of those things had difficulty and grief. But it was my job to do and I did it. Same with death. Just one more job on the list. But it's private and inner and sacred and you need to get some emotional support to get you ready. I think hospice might steer you in the right direction. Might know who to talk to. You have gotten your life in order. Now, get the stage set as you need it to be so you can do what you need to do when the time comes. And we all hope to god it's not for a long time yet. But it is not selfish if you forget everyone else for a while and focus on YOU. I hope this makes sense.
Wrapping you in a big, big hug of appreciation and strength.
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Thank you for the hug, Runor. That is what the hospice therapist said, "This is your time now. You are the boss." And I have been saying all along, I am getting everything ready. I am prepping and I hope I don't have to use it for years to come.
Taking some time off my protocol w hopes of a way to eat. Except the aromasin which is supposed to increase appetite and increase weight. We shall see.
My sister was better today. I call my funeral prep work the stuff for the box I want to close. So she knows we are on the same page even though I have this task. I will see her Tuesday evening for dinner again.
Today I went to a Chinese buffet and had this and that - a bite and ugh, spit it out. Ended up w egg drop soup and a piece of pineapple then a little strawberry ice cream. That is what it is like to take a "dying" person to a buffet. It could be comical, but only for us folks. Other people would not get it.
Runor - it is the monster in the closet, isn't it. Some people get brave enough to open the door and have dialogue too, only won't let it out. Some just lumber up the door and the monster has to figure out the other way out to light. I have the door open, I am talking. And trying to talk it down, like, "Yeah, you're cool, this is groovy, what a magical experience death could be. But let's just put this off a while longer, like a decade or two. Oh, so I only get a year. Or a month? And I won't know which it is? Well, that's better than next week. I suppose. I'm just not done yet."
On my blog I have essays to publish that engage these thoughts. And the fun of it all too. But Have been too busy w the necessities lately to get to that. Someday I will, but it has to be soon, very soon.
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Want to repost this - I found it in another thread I had posted in some years back. Now that I am face to face w hospice or no hospice yet, it huts me in a different way.
A few weeks ago, (YEARS NOW) our daughter was driving home from work and rolled her car. I share her story in part because the reference to 'acceptance is the key to all life's problems today,' quoted from the Big Book for 12 step programs (OA, AA, NA, EA, Al-Anon, ACOA (adult children of alcoholics). It is in fact a theory for life, to accept, not an inherent 12-step program survival mechanism. We all need this acceptance. Figuring out how to accept and what, that is harder than acceptance, at least for me.
My daughter was raised on slogans like this, this too shall pass... easy does it.... the world does not revolve around you... let go and let God.... first things first.... you will intuitively know.....
When she realized she had lost control of her car, she did not accept.
Then when she realized it was going to go off the road, she let go of the wheel, went to her inner self and relaxed to flow with it. She said all these saying went through her mind, as so often they do for her. Let go... let go.... accept....
Can you imagine accepting as you are going into a three-roll accident down an embankment?
We have spoken of this at great length since that morning. Last conversation, we compared life issues. Me, breast cancer with lymph node involvement when I was trying to do something else with my life. (Only now I am in a palliative program with possible hospice change over in the coming week). Her and her dog in a car rolling off the road as the sun rose to a new day when she was heading home from work to sleep.
Both daughter and dog came out without a scratch, her thighs bruised from coming out from under the steering wheel to bounce around and land on the ceiling of the car.
TODAY - I feel like I am on the road and the car is out of control. Tuesday I will see the 'third' oncologist who was actually the first and get his perspective on the current course my body is on and what can be done, if anything he knows of. Wednesday I will know my decision. It will feel better to know I think.
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My daughter has been in two bad wrecks. She has a faith stronger than most people I know. In the second wreck, as she saw the car coming straight toward her, she says that she just relaxed and thought, “well, this is it.” Her ability to do this amazes me. Personally I’m scared to death of dying. I just don’t want to do it. Whenever the thought sneaks up on me, I have panic attacks. Because I’m now stage 4,I can only hope to one day be at peace with it as she and your daughter were.
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Kadcyla is failing, my tumor is growing, and my lungs are starting to fill with fluid again. It's not much, but it's miserable coughing it up, and there's an additional, unproductive cough we're trying to treat with oxy. There is no clear next treatment step, because every solid possibility is based on drugs (HER2+ targeted treatments) that have already failed. I've made it a little over a year, and last September, my prognosis was 3-6 months.
Hopefully, palliative care will help with some of the physical issues, which involve more than the cough. My oncologist and I have not totally given up, but we're aware that we're grasping at straws. My cancer remains a puzzle to the bitter end.
I just have to figure out how to deal constructively with my parents.
Both of them were so abusive and negligent when I was young that I would have been safer in foster care. I developed lupus in my teens, and their response was to deliberately make me homeless and keep me that way. I now know that I almost certainly have ADHD, an unexpected side effect of our efforts to deal with the fatigue. They didn't handle that well, either. When my son was born, my father made noises about maybe getting custody, and said things so terrible that my ex-husband almost threatened to hit him. Mom was so horrible that my ex and I hid when she tried to visit--and she tried in turn to peep through the windows.
They are now on the verge of losing a child, specifically a child they almost tough-loved to death, and are consequently losing their minds. Dad has called me more in the last year than he has in the last 30, and for the first time makes an effort to visit me. Mom stays with me when I need 24/7 babysitting (don't worry, she's harmless now. She just plays World of Warcraft until I need something.) This all sounds good, but Dad is also praising me to the skies for behavior he punished or mocked when my lupus was active (namely using humor to cope with the stress), and Mom goes into a sulk every time there's a setback. She seems to think the hospital is withholding the cure on purpose, not that my cancer is a freak, and gives me the silent treatment for a week or so.
The hardest part, though, is the knowledge that my life did not have to be so hard. My lupus diagnosis was a question of running the right blood tests. I have enough markers there so that, added to the symptoms, it was pretty straight-forward. The ADHD would have been harder, because it's still underdiagnosed in girls, but my parents were both teachers. They could have made convincing advocates, had they chosen to try, and I respond to good, old-fashioned Ritalin instead of the new, high-tech drugs. Instead, they decided that I was being a bad person on purpose, and escalated the awfulness in an attempt to make me straighten up and fly right. It took too long before I was even old enough to advocate for myself and had the resources to get access to medical care, and I never did become a good advocate, although I got better with time. But I spent most of my adult life in poverty and fear, and I did things I'm not proud of to survive and stay off the streets. None of it had to happen. It's even possible that this cancer didn't have to happen, or didn't have to happen so soon. But it hurts to the core remembering how these people who claim they love me treated me when I needed them most, and it also hurts to see what they're willing to do when they're not trying to punish and ostracize someone out of their supposed bad behavior.
I do not want to dwell on this, nor do I want to cause unnecessary drama by talking to them about it. They don't see themselves as having done anything wrong, and I can't punish them more than my death will. They will also be punished by the fact that their only grandchild barely knows them, and doesn't care about getting better acquainted. Their own actions are biting them in the face right now, hard, and I think loving my enemies is my best bet here, as it really will drive them crazy.
I really don't have that kind of time anyway. The cancer is growing through Kadcyla, and will kill me in a matter of months as soon as we stop it. There are things I want to do while I still can, but instead I find myself bogged down in this. I might be able to talk to a counselor, but not right away, and I did not really have a church when this started, although I should be able to get spiritual care through the palliative care/hospice people. For now, I need something I can do when I wake up in the morning that I won't resent, which means something other than a positive thinking self-pep talk, and will keep me from starting my day bogged down in self-pity. My life could have been different, but it wasn't, and in some respects, the cancer is saving me from some unpleasant things that were waiting down the road. If my life was going to be like this, cancer now isn't the bad ending.
Mostly, what I do is try to hide from it, which results in too many hours spent reading my phone. Doesn't help that moving around causes a lot of coughing, so it's a double distraction. But I have a kid (age 22, thankfully, not a little one!) who wants music from me, a few people who would like me to finish that story I started (I can't, but I might be able to do something to reach an ending), some photo albums I should sort through, and other things as well. It helps that Kirby Star Allies comes out Friday, which will give me something to look forward to at the ends of the days.
Or maybe what I needed was just to write it all out. I just e-mailed myself a link to a chart listing the lament Psalms, because they might remind me that I'm not the only one in history who has been betrayed by those who claimed to love them. Pain, grief, betrayal, even self-pity are ancient emotions, and sometimes a Psalm is like a hand reaching out through history and a voice saying, "You're not alone." Heck, various parts of the Bible are reminders that parents have been terrible as long as there have been parents.
Other suggestions are welcome. I just don't have my son's ability to unhook himself easily from what-ifs, so I have to work at it.
Thank you, even just for listening.
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Hi, again, to all my dear sisters who share here, or simply read without sharing. Honestly, I wish I had more energy for posting and staying involved. Please know that I hold you all in my thoughts when I read your posts and that I send lovingkindness to you.
MissRosie, your post touched me deeply. I hold hope that you experienced a sense of catharsis when you wrote all that you shared and that you practice compassion for yourself as you travel this path your life has taken. You mentioned palliative care, and I wonder whether you have considered connecting with a counselor on that palliative care team? When I worked with hospice care, I provided counseling to people at the end of life, and many of them found the process of exploring, sharing, learning, healing, accepting, and letting go to be very meaningful and freeing. You shouldn't have to carry the load that you are carrying all by yourself, and you may find that allowing someone to help you carry it will lessen the burden and fill you with more of whatever it is you need at this stage in your life, whether it is comfort, love, peace of mind and heart, acceptance, you-name-it.
One of the most useful coping skills I have developed over the years is mindfulness meditation, but there are also times that I have needed guided meditations to help me become both more grounded and, at the same time, more free. Tara Brach has a wonderful website that is filled with guided meditations (free), and here is one that I like: https://www.tarabrach.com/reflection-power-of-inquiry/
To connect to her website and choose one of your own liking: https://www.tarabrach.com/guided-meditations/
In lovingkindness to you all....
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Brenda - knowing that you and others read even though the energy or call to post is not there really helps those who need to be heard. THat is a true service.
Swess - interesting, my daughter was also in a second rollover, a high bar of ice across a country road in the dark did it the second time, even at 25 mph and the rescue teams went out of control too. She did say the second one was frightening.
Miss Rosie - parents are a hard deal to navigate. I usually come to this thread later in my list but came here first and read your every word. I hope you found your way through some of the turmoil just by writing out the main sludge of things. My mom wouldn't get help for any health problem, including the cancer that eventually took her life. After Mom died, my stepdad chose another family who treated him abominably, while completely and truly he turned his back on the three of us adult kids, the youngest being his own daughter. So to give you any advice, I have none, I am still dealing with the anger and hurt. And I realize you are not really seeking advice. Except maybe suggestions. I have a therapist and chaplain at my call while in palliative care. Hospice would be too. Perhaps they can help in letting go the turmoil. I know it is hard to be peaceful when there is a resentment the size of Wyoming and there for real reason. Mine is for the medical community that didn't keep tabs on this cancer properly and it gained true footing since 2016.
As far as me, I am still palliative. My oncologist listened to me and set me up w a treatment plan, Faslodex, Arimidex, metformin and curcumin oil blend. So he is not giving up on me. I went full circle back to him after two others who did not care if I lived or died, by their actions we know. Palliative care is good for now, I am content.
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I want to share a thread I started some years back. https://community.breastcancer.org/forum/38/topics...
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Bluebird, on March 15 you wrote "I am content". I hope, with all my heart, that no matter what a day may throw at you, that the rising and falling boat of contentment is what you float on. Hugz.
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Thanks runor - I feel content today too. It is an ocean like ride though, isn't it.
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Tomorrow night (03/26/18) on PBS, at 9pm ET, a two hour documentary--"Into the Night: Portraits of Life and Death"--will air. The link gives additional info, but here is the intro: "To be human is to wrestle with this truth and with the great unanswered question: How do we live with death in our eye? To borrow from Dylan Thomas (whose poem opens the film) do we go gently or raging against the dying light? Do we depart with equanimity or with anger? With clenched fists or more commonly with denial? Or do we see death as something to be fought and even possibly conquered, a challenge increasingly pursued by some of the brightest scientific minds? Finally, what are the stories we tell ourselves? Whether shaped by religion, science, art, the natural world, the power of love, do these narratives sustain us or do they fall away when we suddenly find ourselves ‘with skin in the game.’" For more info, visit: https://www.intothenightdoc.com/about-the-film/
Thinking of you all, sending hope for clarity, comfort, peace of mind, and ease.
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I want to thank everyone for their kindness. You all are right; just writing it out like that was cathartic. I'm finding this dying thing extraordinary in terms of what bubbles to the surface and what doesn't. The side effects from Kadcyla have been horrific lately, high fevers, sweats, and general misery, so I haven't been to the boards until today.
The thing about my parents is that they are who they are, and there was never any negotiating with that. And in terms of how my life turned out, it was hard sometimes, but I had a wonderful son, and I can't think of anything better I could have done than raise him. Breaks my heart to leave him motherless, but I'm watching him be stronger and braver than both of my parents combined. My life wasn't wasted. It just wasn't what I would have liked it to be, but we don't always get what we want, or even what we need. My son doesn't need to lose his mother in his early twenties, but it will be up to him what he makes of it.
One thing I'm so grateful for is that there is no bad blood between my son and me. That would be far, far worse.
I had an interview with a company that does in-home palliative care and hospice, but it went badly. I talk to the people connected to the hospital in about a week. I think that will be better. I know them, and they know me. I'm an unusual case, and I think it's unwise to completely switch over my care team to people who have never treated me before at this point.
Again, thank you, everyone, for listening. It helped so much.
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Brendatrue,
Thank you for the heads up on "Into the Night," We watched and loved it!
Tina
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missrosie. Sorry to hear your son is so young. But it sounds like u did a great job with him to be stronger then both parents. Sure is a lot for those growing broader shoulders of him. Thinking if you.
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Last night was not a good night for tv, regardless of the shows being my favourites. The Resident - a cancer patient falls victim to an oncologist who is greedy. The Good Doctor - the father-figure to main character has brain cancer and goes through the first stage of grief / anger / acceptance.
I identified with the man's desire to not talk it out or waste time on hope to a degree. But he just found out. I have spent years running the path and hoping and trying to change things. Even now, there is still hope and more to do even if it does not work.
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Thank you, PattyPeppermint.
My son's birthday is next month. I'll be here for it, and I'm grateful. No idea what I'll get him, but he's been impossible to buy for since he was a little boy.
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Bluebird I often find it difficult to watch some of my favorite medical shows these days, especially on the days when I'm not doing so great emotionally. I begged my husband to turn off The Good Doctor a couple times when I just wasn't up to watching, couldn't bear to watch another surgical procedure gone wrong or anything like that. The Resident story line about the greedy oncologist hasn't bothered me too much (just made me grateful for my own doctors), but appreciate the heads up on The Good Doctor story line since we have it recorded and will probably watch it tonight. It will probably be tough on both of us (dealing with me dying is harder on my husband than it is on me) or maybe just prompt some discussion.
Maybe because my DX is more recent than yours (or because I went downhill so quickly), I remember that initially I needed some time before I was ready to talk about it. I had to get my own head wrapped around the fact that my doctor was telling me to get my affairs in order before I could even start thinking, researching, talking to others about it. First I had to get past the 60-day window they gave me and I was in pure survival mode, then I started moving forward after I made it past that first big hurdle.
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Lori- sorry for the spoiler. Grey's anatomy y had be crying out loud last Thursday.
I'm still floundering between understanding, acceptance, denial and bargaining.
Too tired to frolick or anything. When I try to do any thing I end up back at understanding and maybe acceptance. Maybe.
That said, I was stage 4 when this was found and I am still here. Time is something I think I have wasted.
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On those particularly challenging days, finding solace “by accident” is always a comfort. Here’s what I found a few minutes ago—a quote from Alan Lightman.
“When we approach Lute Island by boat and gaze at it from a distance, a dollop of rock and green rising out of the sea, I am acutely aware that it will last far longer than I will. A hundred years from now, after I'm gone, many of these spruce and cedars will still be here. And the wind going through them will sound like a distant waterfall. The curve of the land will be the same as it is now. The paths that I wander may still be here, although probably covered with new vegetation. The rocks and ledges on the shore will be here, including a particular ledge I'm quite fond of, shaped like the knuckled back of a large animal. Sometimes, I sit on that ledge (more sitting) and wonder if it will remember me. Even my house might still be here, or at least the concrete posts of its footing, crumbling in the salt air. But eventually, of course, even this island will shift and change and dissolve. In geologic time, there may be no trace of Lute Island. Twenty-five thousand years ago, it didn't exist. Maine and most of North America were covered with ice, thousands of feet thick. Two hundred and fifty million years ago, the Atlantic Ocean didn't exist. Europe, Africa, and North America were joined together in a single landmass. Nothing persists in the material world. All of it changes and passes away....
As I lie in my hammock now on this late afternoon in August, I can feel the seconds ticking away to my end, and I believe it to be a final end. But that finality does not diminish the grandeur of life. As the seconds tick by, I breathe one breath at a time. I inhale, I exhale. These spruces and cedars I cherish and know, the wind, the sweet scent of moist and dark soil — these are my small sense of enlightenment, my past life and present life and future life all in one moment.”
May we find solace, comfort, ease, peace of mind. In lovingkindness....
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Dear Friend...I knew I would find some lovely words here...thank you. I’ve been missing my people XOXO
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Brenda, that was beautiful!
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thank you Brenda!
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thank you Brenda, absolutely beautiful
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perfect says it all
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Good Afternoon all and thanks for this thread.
I have learnt that my family members find it v difficult to discuss death , and accept that it happens to us all, so that leaves me both surrounded but alone as no one seems willing to disscuss mortality.
I was so pleased to find this thread- i get a bit fed up of the positive thinking squad.
My breaking point came recently at a wake after a funeral for a beloved family member . I was chastised somewhat for being upset , and was told “its a family gathering for us to get together and have a good time, theyve gone and youve got to move on”.
For me, this sanitisation, this running away from hurt just doesnt seem genuine or even possible
I feel like a dinosaur and misfit with my feelings of sorrow.
Perhaps its just me
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Hi there
Thanks for this honest and open thread.
I hope its not too wrong to ask, but is it possible than an oncologist deliberately would deliberately mislead someone with stage 4 with small mets to the bone and a couple of suspect spots to the lung , about longevity?
This particular onc seems to be saying the life span ahead could run to 40 years, but everything ive read says 3-5.
I have also read that you cannot die from bone mets- is this true?
I want to be realistic.
Thankyou for your thoughts and love to all.
Treehouse
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