A place to talk death and dying issues
Comments
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Hi everyone,
Including us all in my morning healing meditation. May we all be healed, even if our physical bodies are on the wane.
JJ, I've had several close friends with pancreatic cancer and I have chronic pancreas pain from a medical injury. The pain can be unbelievable. And pancreatic cancer can be so fast!
I'm glad you can be there for your ex sister-in-law. Please take good care of yourself while you're taking good care of her.
And yes, I agree with Rosevalley, ascites are a rough road to walk.
I'm happy to share any hard-earned wisdom with you about ascites - there are so few of us with ongoing issues. Just ask!
Much healing light and love for all, Stephanie
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Rosevally, Stephanie and all you wonderful women thank you for thinking of me and positive energy. Things the last six weeks have been hell on Earth.... Not because of the cancer so much but a terrible flare with my Ehlers-Danlos Syndrome and my feet swelling in the tendons to the point of rupturing, now they want me to wear air splints on my wrist, shoulders, knee, and ankles my feelings are they must be kidding me. I had so much swelling in my body I could not focus or read, watch tv, etc, everything was a complete blur and I thought I was going to loose my sight completely which put me in a great amount of anger. My hands were so swollen that I could not even hold a spoon, fork or cup. Finally things are slowly coming into a controlled state again. I had to go off the study that I was on and I too went on Ibrance but on Tuesday I'll have scans and see my Onc don't think it's working my cancer markers went up 1752 points higher than the previous 967 so I'm in the 2,000's (sorry I don't feel like adding the two together can't think of that high of a number upsets me too much).
My 21 year old daughter then got on a tough love kick saying you can't quit with life, you can't do DWD drugs because it will effect me too much into my future. She finally got angry with the cancer after seven years of weekly doctors visits etc. Then the doctors all had a meeting and they wanted me to have a nurse come in three time a week for helping to walk and start to get around again making sure I don't tear again. No way I said the the nurse who called me today, she started in on this whole plan for me and I said excuse me but you do know I have Stage IV cancer and the doctors felt I should have died last February. She didn't know what to say then said what do you want! Peace and quite was my response.
Wanted to comment on if we see people when we die. I sat with my mother in her home taking care of her with hospice because she did not want to die in a hospital or nursing home. I went back East and took care of her, the morning of her death she asked me will I see my parents when I die? My answer is do you want to see them, she did, so I said then you will. I also don't want to see many people whom I've met along my journey of this life. I made a conscious decision in life to put endings to those whom I do not wish to see after I die throughout my life. Not negatively, I just would say even to a coworker one time after a show, I want to say that even though you were so hard to work with I wish you well and hope you have a wonderful life, I told her what upset me in my opinion and then allowed her to say anything she wished to me. When finished I said thank you for your time it was important I put closure to this situation for I don't want to deal with you if there is life after death or if I have another life after this one. Even with my father I made sure there was closure years before he died. So I hope I get some time on a Nebula by myself. I really worked hard on this life hoping that it was my last. My soul is tired even more than my body. If that makes any sense?!
I want to write more and comment on so much but I just can't at this time and I hope you all understand, I'm exhausted still. I hope all of you have less pain and happy dreams and quiet moment to just be you. I think of you my sisters and it was so good to finally get caught up reading, listening and being so thankful for such wonderful women who share and care their stories and journey through life.
Much love to you all.
M
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Oh Dear M360,
Your beautiful letter released a glow of love and compassion within me! Thank you!
Like you, I have a genetic condition that affects my daily health and well being. Like you, I'm living with terminal cancer. Like you, I don't know how long my going will take and wonder if I've the patience to endure all between now and gone. Like you, I both maintain relationships across the life-death divide and have made closure with many (alive and dead).
Recently, I've been reflecting on something the Divine Mrs. M. explained to me about bco - think of it like a country. Each forum is a town. Each topic/thread is a neighborhood.
I joined bco to meet Rosevalley and to be with others in this neighborhood of D&D. What a delight to meet so many beautiful neighbors, even though our mortality rate is high...still, this is the breast cancer world and our D&D neighborhood is a reality check for those who'd sweep death away forever.
Most of the bco forums and topics/threads are focused on folks recognizing their vulnerability and mortality through support, information, surviving treatments (mainstream and holistic) and finding new treatments when the old ones no longer work. Most members want to postpone, if not eliminate death and the fear and dread they evoke.
This topic/thread is less about escaping or postponing death and more about turning to directly face it.
This beautiful sculpture by Cydra Vaux returned to comfort me. Vaux died of metastatic breast cancer in 2013 - http://www.post-gazette.com/news/obituaries/2013/0...
"Self Portrait with Mirror Image of Death,"
Maybe each of us is confronting or leaning into death in our unique and beautiful way.
Which brings me to the topic of suicide, death with dignity (DWD), aid-in-dying and terminal patients' wish to hasten death (WTHD).
Last week, DWD became legal in my state. Is this a choice I'd make for myself? Given my strong bias against suicide (based on early life experience and years of working with folks in crisis), I've done everything in my power to ease suffering and strengthen the life force.
But, is DWD, self-life-taking, really the same as suicide? Is it black and white or a rainbow of streaming light?
Our breast cancer lives have centered around postponing death. This topic/thread explores turning toward death.
One term that helps me to explore the DWD topic is WTHD - rather than postponing death any longer, what if one not only turns toward death, but engages it, embracing it as one's dance partner?
We've engaged and embraced life, even at the cost of terrible personal suffering - those of us with long-term and life-threatening illness who've endured heavy medical treatments recognize these costs in our quiet moments. Even if we're willing to pay the costs, eventually death will come for all.
M360 and Rosevalley too, your loving concern for your daughters' needs are important as you weigh your DWD choices or even your choice to "give up".
I can only imagine how your deaths will affect them. Your death would be complicated by DWD, giving up, hastening death, stopping treatment, your own turning toward death, whether everyone else is ready for you to go...so much more!
As usual, I have no answers...just trying to ask good questions to help us live as well as possible with life and death.
Well, it's time for me to drain the ascites, then to sleep again. Like a baby these days - sleep, drink, eat, pee, poop, drain, wake, smile, drift, en-joy.
What a beauteous time of life this is for me.
much loving kindness for all, Stephanie
(aside - here's an interesting article by hospice nurse on giving up http://www.pallimed.org/2016/03/what-does-giving-u...)
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I thought you all might appreciate this piece
What It Really Means to Hold Space for Someone
While we supported Mom, we were, in turn, supported by a gifted palliative care nurse, Ann, who came every few days to care for Mom and to talk to us about what we could expect in the coming days. She taught us how to inject Mom with morphine when she became restless, she offered to do the difficult tasks (like giving Mom a bath), and she gave us only as much information as we needed about what to do with Mom's body after her spirit had passed.
The author with her mother
"Take your time," she said. "You don't need to call the funeral home until you're ready. Gather the people who will want to say their final farewells. Sit with your mom as long as you need to. When you're ready, call and they will come to pick her up."
Ann gave us an incredible gift in those final days. Though it was an excruciating week, we knew that we were being held by someone who was only a phone call away.
In the two years since then, I've often thought about Ann and the important role she played in our lives. She was much more than what can fit in the title of "palliative care nurse". She was facilitator, coach, and guide. By offering gentle, nonjudgmental support and guidance, she helped us walk one of the most difficult journeys of our lives.
The work that Ann did can be defined by a term that's become common in some of the circles in which I work. She was holding space for us.
Learning to hold space for others
What does it mean to "hold space" for someone else?
It means that we are willing to walk alongside another person in whatever journey they're on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.
Sometimes we find ourselves holding space for people while they hold space for others. In our situation, for example, Ann was holding space for us while we held space for Mom. Though I know nothing about her support system, I suspect that there are others holding space for Ann as she does this challenging and meaningful work. It's virtually impossible to be a strong space holder unless we have others who will hold space for us. Even the strongest leaders, coaches, nurses, etc., need to know that there are some people with whom they can be vulnerable and weak without fear of being judged.
Understanding the essence of holding space for others
In my own roles as teacher, facilitator, coach, mother, wife, and friend, etc., I do my best tohold space for other people in the same way that Ann modeled it for me and my siblings. It's not always easy, because I have a very human tendency to want to fix people, give them advice, or judge them for not being further along the path than they are, but I keep trying because I know that it's important. At the same time, there are people in my life that I trust to hold space for me.
To truly support people in their own growth, transformation, grief, etc., we can't do it by taking their power away (ie. trying to fix their problems), shaming them (ie. implying that they should know more than they do), or overwhelming them (ie. giving them more information than they're ready for). We have to be prepared to step to the side so that they can make their own choices, offer them unconditional love and support, give gentle guidance when it's needed, and make them feel safe even when they make mistakes.
Holding space is not something that's exclusive to facilitators, coaches, or palliative care nurses. It is something that ALL of us can do for each other – for our partners, children, friends, neighbours, and even strangers who strike up conversations as we're riding the bus to work.
Every day is an opportunity to hold space for the people around us
8 Tips to Help You Hold Space for Others
Here are the lessons I've learned from Ann and others who have held space for me.
1. Give people permission to trust their own intuition and wisdom. When we were supporting Mom in her final days, we had no experience to rely on, and yet, intuitively, we knew what was needed. We knew how to carry her shrinking body to the washroom, we knew how to sit and sing hymns to her, and we knew how to love her. We even knew when it was time to inject the medication that would help ease her pain. In a very gentle way, Ann let us know that we didn't need to do things according to some arbitrary health care protocol – we simply needed to trust our intuition and accumulated wisdom from the many years we'd loved Mom.
2. Give people only as much information as they can handle. Ann gave us some simple instructions and left us with a few handouts, but did not overwhelm us with far more than we could process in our tender time of grief. Too much information would have left us feeling incompetent and unworthy.
Knowing how much information to give people in times of grief
3. Don't take their power away. When we take decision-making power out of people's hands, we leave them feeling useless and incompetent. There may be some times when we need to step in and make hard decisions for other people (ie. when they're dealing with an addiction and an intervention feels like the only thing that will save them), but in almost every other case, people need the autonomy to make their own choices (even our children). Ann knew that we needed to feel empowered in making decisions on our Mom's behalf, and so she offered support but never tried to direct or control us.
4. Keep your own ego out of it. This is a big one. We all get caught in that trap now and then – when we begin to believe that someone else's success is dependent on our intervention, or when we think that their failure reflects poorly on us, or when we're convinced that whatever emotions they choose to unload on us are about us instead of them. It's a trap I've occasionally found myself slipping into when I teach. I can become more concerned about my own success (Do the students like me? Do their marks reflect on my ability to teach? Etc.) than about the success of my students. But that doesn't serve anyone – not even me. To truly support their growth, I need to keep my ego out of it and create the space where they have the opportunity to grow and learn.
Keep your own ego out of it
5. Make them feel safe enough to fail. When people are learning, growing, or going through grief or transition, they are bound to make some mistakes along the way. When we, as their space holders, withhold judgement and shame, we offer them the opportunity to reach inside themselves to find the courage to take risks and the resilience to keep going even when they fail. When we let them know that failure is simply a part of the journey and not the end of the world, they'll spend less time beating themselves up for it and more time learning from their mistakes.
6. Give guidance and help with humility and thoughtfulness. A wise space holder knows when to withhold guidance (ie. when it makes a person feel foolish and inadequate) and when to offer it gently (ie. when a person asks for it or is too lost to know what to ask for). Though Ann did not take our power or autonomy away, she did offer to come and give Mom baths and do some of the more challenging parts of caregiving. This was a relief to us, as we had no practice at it and didn't want to place Mom in a position that might make her feel shame (ie. having her children see her naked). This is a careful dance that we all must do when we hold space for other people. Recognizing the areas in which they feel most vulnerable and incapable and offering the right kind of help without shaming them takes practice and humility.
A wise space holder knows when to withhold guidance and when to offer it gently
7. Create a container for complex emotions, fear, trauma, etc. When people feel that they are held in a deeper way than they are used to, they feel safe enough to allow complex emotions to surface that might normally remain hidden. Someone who is practiced atholding space knows that this can happen and will be prepared to hold it in a gentle, supportive, and nonjudgmental way. In The Circle Way, we talk about "holding the rim" for people.
The circle becomes the space where people feel safe enough to fall apart without fearing that this will leave them permanently broken or that they will be shamed by others in the room. Someone is always there to offer strength and courage. This is not easy work, and it is work that I continue to learn about as I host increasingly more challenging conversations. We cannot do it if we are overly emotional ourselves, if we haven't done the hard work of looking into our own shadow, or if we don't trust the people we are holding space for. In Ann's case, she did this by showing up with tenderness, compassion, and confidence. If she had shown up in a way that didn't offer us assurance that she could handle difficult situations or that she was afraid of death, we wouldn't have been able to trust her as we did.
The circle becomes the space where people feel safe enough to fall apart
8. Allow them to make different decisions and to have different experiences than you would. Holding space is about respecting each person's differences and recognising that those differences may lead to them making choices that we would not make. Sometimes, for example, they make choices based on cultural norms that we can't understand from within our own experience. When we hold space, we release control and we honour differences. This showed up, for example, in the way that Ann supported us in making decisions about what to do with Mom's body after her spirit was no longer housed there. If there had been some ritual that we felt we needed to conduct before releasing her body, we were free to do that in the privacy of Mom's home.
Holding space is not something that we can master overnight, or that can be adequately addressed in a list of tips like the ones I've just offered. It's a complex practice that evolves as we practice it, and it is unique to each person and each situation.
From: http://www.filmsforaction.org/articles/what-it-really-means-to-hold-space-for-someone/
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Hi Brenda,
Always lovely to hear from you - you bring such important energy! Thank you!
This essay has crossed my path over the past many moons and this time I went right to the source:
What it means to "hold space" for people, plus eight tips on how to do it well
By Heather Plett on March 11, 2015
http://heatherplett.com/2015/03/hold-space/
She has several follow-up essays on the topic at her blog.
I'm glad to see the essay has touched many readers and fed her career!
BTW, the author is in Canada where Hospice Care is called Palliative Care. In the USA, they are interlinked, but separate medical specialties.
xxx
I'm continuing to slowly unwind. It's hard to explain the weakness, sleepiness, new and odd physical symptoms. This unwinding feels so merciful! As my body contracts around a swollen belly, my soul-spirit continues to expand and I'm very happy and satisfied with living and dying. It's berry and stone fruit season here - what a nice surprise. But I got sorta misty-eyed when I realized that I've probably missed my last chance to stand in the rain...similar feelings to my last times in snow, mountains, rivers, lakes, hot springs and ponds. I hope to make it to the shore again (only an hour away - seems possible).
While this livingly dying isn't for everyone, I'm grateful for the opportunity to be present with what is! And for my capacity to do so.
Oh, this weekend I switched from morphine and tramadol to methadone. My guts woke up! Burbling, gurgling, rumbling, tumbling, cramping and farting. I don't remember when I last felt this way. Was ready to go on a rice cake diet, but things are settling down. I think my tastes are going to undergo a change as my body adjusts. And, yes, the pain control is much better, smoother. I don't feel noticeably cloudier or sedated. Can attribute everything to an excarnation process - woo hoo!
xxx
Found this article interesting, because it details the final stages of the dying process. It looks like I'm in the last 1-3 months. But hey, I'm still here after 6+ months. Just never know!
The Journey Towards Death: Recognizing the Dying Process
https://www.verywell.com/the-journey-towards-death-1132504
Friends, I am sending love and light for all - especially Rosevalley, M360, Brenda, Juli, Shelley, Barbe, Blondie, Patty, Hope, Chris and everyone on the Palliative Care and Hospice path,
Sending full moon blessings for all and summer solstice regards to those in the northern hemisphere, winter solstice regards to those in the southern! ~ Stephanie
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The trigger of some meaningful contemplation for me over these last days
The Moment
Margaret AtwoodThe moment when, after many years
of hard work and a long voyage
you stand in the centre of your room,
house, half-acre, square mile, island, country,
knowing at last how you got there,
and say, I own this,is the same moment when the trees unloose
their soft arms from around you,
the birds take back their language,
the cliffs fissure and collapse,
the air moves back from you like a wave
and you can't breathe.No, they whisper. You own nothing.
You were a visitor, time after time
climbing the hill, planting the flag, proclaiming.
We never belonged to you.
You never found us.
It was always the other way round.0 -
Mmm, poetry - my more native language than prose.
Here's a reply from Wendell Berry
The Real Work
It may be that when we no longer know what to do
we have come to our real work,
and that when we no longer know which way to go
we have come to our real journey.
The mind that is not baffled is not employed.
The impeded stream is the one that sings.
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Both great pieces of poetry. Love it!
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A friend with Stage IV kidney cancer sent this for Solstice.
I am so sad and everything is beautiful ~ Stephanie
Adrift
by Mark Nepo
Everything is beautiful and I am so sad.
This is how the heart makes a duet of
wonder and grief. The light spraying
through the lace of the fern is as delicate
as the fibers of memory forming their web
around the knot in my throat. The breeze
makes the birds move from branch to branch
as this ache makes me look for those I've lost
in the next room, in the next song, in the laugh
of the next stranger. In the very center, under
it all, what we have that no one can take
away and all that we've lost face each other.
It is there that I'm adrift, feeling punctured
by a holiness that exists inside everything.
I am so sad and everything is beautiful.0 -
Hello Ladies,
A dear friend of mine (cancer free) is dying of old age. We're very close. I've seen him every day for 8 or 9 years. For us with cancer it's different. We know pretty much, what will kill us and somewhat how the end will physically come. My friend is afraid, I think, because he doesn't know how or when it will come. He hangs on to life and fights for each day. Even though when I ask him how his day went, he always responds, "The same."
He's very unwell, diarrhea for 3 weeks. This is his second hospitalization. I don't know if you heard about the AZ VA Hospital and clinics but it's not good. Last night he went to the University hospital. I hope they fix him. I know he wants to be home and I know he hates being this unwell.
I'm very grateful that barring any unforeseen illnesses or accidents, I know what's coming and how it comes and how I'll go. It's giving me a great peace of mind that I don't think everyone gets to experience.
I hope you all are having a wonderful day.
cb
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you ladies are lovely souls. I am stage IV also...but very functional at this point in time. As I chuckle to myself...I could be gone next week. A friend of mine was a construction worker, stage IV, worked up till he died. Had to go to the hospital after work for fluids...was gone in a week. I see you brave ladies suffering as you do....and selfishly pray that I go like my friend John. I have already gone past my survival time. We desperately try to enjoy the moments while we so understand that they are just moments. I have had a lot of angry moments recently, don't like them, peace is what I want at all times, but I get in my own way. I have not shown grace to people this week. I yearn for my peace again admist the trials
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No, they whispered.. you own nothing.
How perfectly said. We are visitors sad and awed- it is so beautiful. Thank you for the gifts of poetry and your shared thoughts. So many of these poems radiate within my head. I love them.
A long time friend 37 years has had his cancer come back and spread. We are the same age. He has 4 kids and I have 3. We have known each other since before we were married and had kids. Life is fragile. We live on opposite coasts. We suffer the same. I hope his treatment beats back the cancer. I hope the Taxol works for me. I go for infusion 2 tomorrow. My gut is acting so odd. My ever present ridge of gut cancer is firm and my intestines bloat and rumble around this firm ridge. I started cipro for a UTI. Everything I eat makes me feel like thanksgiving but it stays down. The ascites fluid is increasing. It sloshes and sqooshes... drain days are the best. So we will see if my cancer responds to Taxol. My intestines feel like a war zone. I feel like life is fragile and fleeting. Any attempt to grasp and hold on is futile and silly. Best to ride the body raft and float on the river of life seeing where it goes. Let the current take me. It's hard to give up the idea of steering and paddling thinking you are going somewhere.
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Rosevalley,
The analogy of a raft and floating where we are taken, so very apt. Yes we have lost the ability to steer.
Thank you
Nel
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Two meditations for our wild and precious lives.
healing love & light, Stephanie
WORD FOR THE DAY
In being with dying, we arrive at a natural crucible of what it means to love and be loved. And we can ask ourselves this: Knowing that death is inevitable, what is most precious today?
ROSHI JOAN HALIFAX
The Summer Day
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
—Mary Oliver
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Hi, I am not sure if it is ok to post here and I am sorry if I upset anyone. I lost my Mom my best friend 2 weeks ago today to breast cancer that metastasized. I am so devastated. My Mom held on to a goal to make it to my daughters wedding in May and she did it, and she danced for 5 seconds with us holding on to her, the next day her body gave out and she ended up in the hospital with her lungs filled with fluid and blood. They did drain it and she ended up in hospice after a week. I slept at the hospice with her for one week and I want to tell everyone it was the best thing I ever did. I listened to my Mom talk to her Mom and Dad and other family that were no longer with us. My Mom would tell me that so and so was standing next to me but I did not see them. It was so amazing. I am no longer afraid to die because I witnessed my Mom tell family to wait for her. The day before my Mom died I brought her back to our house and my kids and I helped her all night. The kids learned so much from this and my Mom was so happy and at peace to be with all of us when she died. My Mom died the next day. She was surrounded by her grandchildren and loved ones. I held her hand through it all until her last breath talking to her and she still tried to get kisses from her grand kids until her last breath. The morning of the day she died we heard her tell someone wait not yet. I hope this brings comfort to some of you. I am sorry for the pain you have to go through. I miss my Mom so much. My Mom was 69 and from what we know got breast cancer like 5 years ago and then it spread everywhere. I took her out every weekend for dinner with my kids up until the end. Make memories! My Mom told the doctors when she was told she was in remission that she had so much bone pain and they thought it was her arthritis. They were wrong and maybe could have caught it. Please if you know your pain keep telling your doctors. Good luck and prayers to all. I love my Mom so much and will miss her more than anyone will ever know.
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Dear lattelover, we're so sad to hear this... Please accept our condolences on the passing of your mom.
(((HUGS)))
The Mods
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Dear lattelover- what a beautiful post you shared about your Mom. She was clearly loved and had a chance to spread her love and say her goodbyes to family. How wonderful to be home and with loved ones. You gave her a lovely parting gift. I hope her memories and love provide comfort to you in the years to come. (((Hugs))) rosevalley
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Thank you, lattelover! I love that your mother's dying request was more kisses from her grandchildren - she sounds exceptional and I know you will both mourn and celebrate her death. Thanks for sharing a bit of it with us.
You've truly been to the threshold with your mother, just as she was at your threshold of birth.
I too was with my mother when she died and it was a transforming experience for both of us - really healed our often distant relationship.
And that room was wholly, holy sacred like being near ancient trees, at the wild shore, in vast temples, on sacred ground.
Here's a poem that reflects the feeling in her death room:
-------The Distance
The distance between us
is holy ground
to be traversed
feet bare
hands raised
------- in joyous dance
so that once it is
--------------crossed
the tracks of our pilgrimage
shine in the darkness
& light our coming together
in a bright & steady light.------© Rafael Jesús González, 2011
May love never die but always shine its bright & steady light in our lives.
healing hug, Stephanie
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Opening my heart to you all today....
For My Young Friends Who Are Afraid (by William Stafford)
There is a country to cross you will
find in the corner of your eye, in
the quick slip of your foot—air far
down, a snap that might have caught.
And maybe for you, for me, a high, passing
voice that finds its way by being
afraid. That country is there, for us,
carried as it is crossed. What you fear
will not go away: it will take you into
yourself and bless you and keep you.
That's the world, and we all live there.0 -
Lattelover, thank you for sharing that your Mother was comforted by others from the other side. I have witnessed this as a nurse, but wonder if it comforting to others. I find it very comforting to know that there are loved ones who will greet me when I pass this earth. God bless you as grieve your Mom
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Thank you for all your thoughts on this subject. I think about this often as a stage IV cancer patient and not able to tolerate anymore chemo. I've read many books about the peace you feel when you are close to death and have read many have no pain. I do wish this is so as we go through so much pain with toxic treatments.
Terri
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Hi Terri,
I can't remember if you posted at this topic before, but just read at another topic that you've stopped chemotherapy and are doing very little treatment now.
Terri, I hope that stopping toxic treatments leads to a period of peace and well being when you can continue to appreciate your life.
And I hope that you will call in hospice care when it's the right next step for you. Be sure to interview local non-profits and for-profit hospice providers in your region - what they cover can vary widely. Things like response time, ability to continue some treatments that don't have curative benefits, respite care and a good medical team that can work with your current hospital/providers can make a real difference!
Terri, I'm currently in my final weeks of life and remain calm and at ease - but I've decades of meditative and mind-body practices. Plus, I have a great circle of care made of friends and family members who take great care of me!
And my hospice team works well together, with my circle and with me.
I'm so appreciative of my flexible and complementary hospice nurse, as I've more and more really uncomfortable symptoms and prefer not to be in physical distress - severe shortness of breath, belly swelling and mouth and lip pain are all physiologically scary, no matter how reliable my prior practices!
I've been posting my personal updates at the acknowledging and honoring our community forum, so non-stage IV members can comment there - it's unclear whether they're welcome at this forum and that seems like a good solution.
Terri, I will continue to meet you here at D&D for as long as possible.
Please ask any questions that matter to you - we will do our best to reply!
Terri, I'm holding you in loving, healing light, Stephanie (also N. CA)
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Stephanie, Terri, Rosevalley, and all of the wonderful ladies who post and read here... thinking of you today and always.
With love and gratitude...
Rose
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I don't think it's a matter of not wanting other stages to post here. It's just the stupid comments we don't want - have you tried almond pits to cure yourself - oh you're so brave - don't give up - just think positively - there is a cure for breast cancer but Big Pharms is hiding it - my friend took baths in olive oil and cured herself - coffee enemas will cure you - um how?????
I think y'all get my point. We aren't here to listen to stupid platitudes. We're here to talk about the dying process.
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Hi Barbe,
Thanks for weighing in on the original purpose of this particular topic:
Topic: A place to talk death and dying issues
Forum: Stage IV and Metastatic Breast Cancer ONLY —
This post is for those of us with concerns and issues about death and dying to talk about them.
IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.
xxx
My comment was about the entire forum eight policy:
Forum: Stage IV and Metastatic Breast Cancer ONLY
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
I know that there's been contention in the past about posting at this forum by other bco members who are caregivers or have earlier stage disease. There's even a separate topic at forum 8 for those are not Stage IV but have questions.
If I understand correctly, this exclusion is necessary to ensure a safe place for those with a Stage IV/metastatic breast cancer diagnosis. If the cost is exclusion of others, then so be it.
There are plenty of places at bco that are more neutral meeting grounds, where we can communicate and share whatever our stage of disease or status as caregivers.
I want to be respectful of the intent of this forum, this topic and the needs of members to connect.
Others, please correct me, if my understanding is wrong.
In my early days at D&D, I didn't understand that any and all posts by the affected are accepted, regardless of tone - as long as they don't break bco's Community Rules - https://community.breastcancer.org/forum/131/topic...
I've since got with it and encourage others to post whatever is on our minds and in our hearts - even if the details are grisly and the feelings are raw.
Hope this clarifies, rather than obscures things.
best healing regards, Stephanie
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A long New Yorker article on a hospice nurse - useful for understanding what they do...though most of the dying people profiled are quite old.
http://www.newyorker.com/magazine/2016/07/11/the-w...
warm wishes, Stephanie
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A song and a poem
Prayers for Freedom
MaMuse
xxx
A Prayer
Clarissa Pinkola Estes
Refuse to fall down.
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you
from lifting your heart
toward heaven--
only you.
It is in the middle of misery
that so much becomes clear.
The one who says nothing good
came of this,
is not yet listening.0 -
Dear bco friends,
Back in February, I shared some serious misinformation on Compassion and Choices and medical aid in dying (MAID). The volunteer who spoke with me shared distorted and incomplete information and complete fibs. Her position with the organization has since ended and I'm officially retracting what I wrote.
And I'm offering a huge apology to anyone injured by what I shared. I meant well, but should have triple checked my source!
~Stephanie
The following is bogus information! It is neither truthful or accurate. Nor is it ethical!
I was taken in by the volunteer's authoritative manner, please don't believe it!
My February 2016 post: I'm in California, not Oregon, but I decided to find out more about DWD here - how it's been done here for the past many years and how our new legislation will change it.
I'm not advocating this for anyone else or even myself, but I met with Compassion and Choices yesterday to talk about self-life-taking at eol and they told me about their cocktail - elavil plus anti-emetic plus ativan. The cost is less than $100 and elavil can be bought over internet, they'd help me get the rx. Also, they'd help me prepare the elavil by grinding it fine, making a slurry and sitting with me when I die. They said others can be in the room with me, that suicide isn't illegal and that they've done this for/with others many times.
Seconal requires a triplicate prescription, while the other drug doesn't, making it easier to get online and by rx.
I looked this up this method online and found these written instructions. Ah, the things you can find on the internet!
Here's the C&C main website. You may need to a referral to a volunteer or staff member in your region.
The new California legislation will make dying more difficult because it extends the process by adding doctors, paperwork and waiting periods, so I feel like I need to decide soon whether I want to get the drugs now, because I might want to use them later.
My body keeps saying, "nope, nope, nope, nope."
And my soul says, "I'd rather maybe take psilocybin and open to the whole experience of living and dying than to end my life unconscious."
I've decided to keep an open mind and sleep on it for three nights before saying nope. Or yes.
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Stephanie thank you for posting the song Prayers for Freedom. I played it twice and really enjoyed it. The flowers floating on the river reminded me of what we saw in Vietnam in 1994. The people made elaborate flower arrangements to honor their dead and floated them down the river. They were very beautiful and we admired them.
I have my script for seconal. It's made my fear of dying in pain and misery much more bearable. It's my insurance of a compassionate exit minus the suffering. I have seen and experienced enough suffering. More suffering will not teach me more about suffering. I hope you decide what is best for you mentally and spiritually. I pray for your well being of mind and heart even though you are dying of cancer. I pray you will die in your sleep gently carried away to the other shore. Great peace and love your way. Glad your catheter got unclogged and you able to drain again.
Lovingkindness to all.
rosevalley
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Just wanted to let you all know that Blondie has passed away...sorry to be the bearer of bad news, but I know many of you interacted with her. I will miss her. I read this on the BCO Angels thread. Hugs to all.
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