A place to talk death and dying issues
Comments
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Cassandra...I also thank you for the message about your lovely Mom. We've missed Sky's voice, but knew she had been struggling, and so having this note from you gives us peace...knowing that she's being cared for & loved, tenderly. Our hearts ache, losing our beloved sisters, but please let her know she'll always carry on in our hearts. She would say "Namaste".
Rose...my hopes are high that possibly you may continue to feel better...I'm praying so!
M360...so glad to see your update...and that you are continuing tx as long as you're able. You've enlightened me...knowing that you are weak & able to accept help, yet knowing there is life left.
Blondie...your sweet voice boosting everyone's heart.
Just sending love to all...amazing friends.
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I've been living with dying for a long time - since I nearly died as a baby and a few other times along the way. For the past five years I've focused on finishing up my life, so I can break on through to the other side.
To those who believe that thinking, talking or writing about death will make it true, I'm here to say, "It hasn't."
Actually, my slow dying has enriched the lives of many, including myself.
Brenda, I do hope you can offer compassion to yourself and to strengthen that resolve, I'll reflect back - we need not only self-compassion, but the compassionate, attuned attention of others who can be strong for us, when we can't for ourselves.
Compassion = suffering with. Comfort = being strong with. Companions bring bread (pan) for the journey.
We need one another in dying, just as we do in birth and in growing into our human selves.
In the month I've been at bco, I've seen extraordinary acts of compassion, comfort, companionship and shared emotion (commotion?). Members are doing this together, even as it seems one or another is doing it alone.
I appreciate the listeners/silent readers of this topic and judging by the view count, there are many!
I appreciate the empathy and am reminded of this Brene Brown video on empathy https://www.youtube.com/watch?v=1Evwgu369Jw
I appreciate too being heard/read and being included in the roll call of members facing dying.
Brenda, I think you may appreciate this article Attachment Theory and Spirituality: Two Threads Converging in Palliative Care? Each of us has a very different approach to dying and it can be influenced by our early experiences in life. If our existence and feelings were valued and accurately mirrored back to us, we experience "secure attachment". Early life doesn't always go that way and we don't always end up trusting ourselves...because we need others to trust us.
A whole lot of my hospice experience/healing involves my care team affirming me - my choices, wishes, needs and approaches to my own dying and death. I feel seen, my feelings valued, my hopes and dreams worthy of their support. I'm planning my Deathday party, as I like to say, and I get to have it my way...surrender and acceptance of a greater love than I can yet imagine.
I hope this is helpful.
Great gratitude, Stephanie
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Stephanie...Longterm...I'd like to copy your post & put it on my fridge :-) Four days after stage 4 dx, I was telling our priest after Christmas mass & I said if I died in the 5 months they prognosed (?), I'd lived a wonderful life, wasn't afraid to die & knew a wonderful new life was awaiting...his smile & words were comforting. My family later told me they didn't want to hear that...they weren't ok with my dying. I told them I didn't want to die & leave them, but having lived a full, wonderful life is what it's all about & I hoped it would make them happy, give them peace that I could say & mean that! That said...to have the words & advice of so many sisters who've shared the end of this life with us all, I pray I will be as strong & seek others' comfort & love, as they, you, have. What a gift that you came to this place. PS...saw Brene in Seattle & my sister quotes her every time I open my mouth...she's an amazing woman as well!
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RK, I'm always heartened to hear your voice, wherever it pops up in my travels at BCO. Your words are always so heartfelt. Thanks for sharing your special "you-ness" with us.
Bon, I've had several tough nights in a row, and I think I remember reading your last post before it was edited. If I have not dreamed that, I want you to know how your genuineness really touched me when I read it. I think many of us yearn to be seen in our most authentic aspects, and that often means messy and turbulent, which is often difficult for others to accept or tolerate.
Stephanie, thanks for mentioning the article on attachment theory and spirituality. I am in the middle of a difficult road trip, so I will not be able to explore it in depth until I return home and recover. I have read the abstract, and it sounds very interesting. I am familiar with attachment theory and feel comfortable acknowledging that my early years were turbulent and unsafe. For many years, I was fiercely self-reliant and had difficulty trusting others to be present for me. Unfortunately, some of my early adult attempts to do so met with betrayal and sadness, but fortunately, I did not give up. I do have trusted others who I know are by my side no matter what, but in recent years--during a time of increased physical disability and stress--some of my dear friends and a couple of family members have abandoned me--some at critical times, and others permanently--and that experience remains heavy on my heart (aka grief). Throughout these recent years, I have learned more and more about the power of self-compassion and the value of asking those I trust for support and authenticity in relationship. I still tend to be quite self-reliant, but I am balancing that more with reliance on trusted others.
And Stephanie, Hortense, SkyLotus, M360, Rose, any who are intensely challenged or suffering today, I hope for you comfort and connections to those you trust and that which brings meaning to your lives.
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Wonderful to see your post, Rosevalley.
I caught your post last night too, Bon, and I'll take "messy and turbulent" (as Brenda said) over edited any day! It wasn't stupid, it was real. ((((Hugs))))
I don't think I can express how much I appreciate everyone here. You all bring such unique voices to this forum, and I read you all, respect you all so very much.
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Most of you probably know that David Bowie died this weekend. He died "of cancer," is the public statement, but does not specify what kind of cancer it was. Rumors on the Internet say it was liver cancer, but it's not clear if it was primary liver cancer or cancer that had metastisized from the lungs. What ever it was - Bowie was aware that he was going to die, and kept this news from the media. He produced his last album, Black Star, to be released close to the anticipated time of his death. (It was released on January 8, his birthday. He died January 10.) The work is a performance piece about dying. Bowie turned his death into performance art. There is a great piece in The Telegraph on his work:
http://www.telegraph.co.uk/news/celebritynews/1209...
The video "Lazarus" begins with the lines: "Look up here , I'm in Heaven," and is about dying:
https://www.youtube.com/watch?v=y-JqH1M4Ya8&feature=youtu.beHe was my greatest muse, all my life. I am very sad at his passing, but I am in awe of the way that he chose to go.
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Scrunch, yes, he was truly an original. I'm not quite ready to view that video just yet. Maybe with a glass of wine in my hand. But wow… he was fearless.
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I can't imagine making that video knowing you are dying. What it took. Wow. May he RIP. Went to college with him so to speak. Truly an inspiring artist to many.
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Brendatrue, thank you for keeping me in your thoughts and prayers I really appreciate such.
Brenda and Longternsur I have to comment on other diseases and them not getting or are they address with as much compassion as breast cancer. My own two daughters have said on many occasions that all the suffering I had for 25 years with EDS and Anticardio-Lipid disease and other parts of Lupus, not to mention arthritis. I had over 30 surgeries down to the bone from torn connective tissue because of EDS no one understood and no one was compassionate except my daughters both are hereditary diseases in which my daughter who is Autistic has (she is high functioning in some areas and then not so in other levels, she doesn't cry and when there is complications with her EDS she has to come to me to make doctors appointments and braces so that she doesn't tear pain is not something she feels and so that we have to make sure we are looking at other symptoms.) It wasn't until I got cancer that most of my friends could understand and wrap their brains around that they stepped up to help in any form. I tell my Oncologist that my cancer doesn't cause me 1/5 or the pain and suffering that my other conditions do. I wish those who suffer from arthritis and have spent years and years suffering with the pain and debilitating life style changes they have had to make got the attention and support they needed to cope and deal with such as cancer patients do. I speak from this first hand. I could have put so much that I have learned and skills taught to me with coping with advanced cancer with my EDS and throwing so many blood clots with the Anticardi-Lipid Disease, when this happened in my lungs and legs and arm while having cancer the treatment and follow up was so amazing next to what I had dealt with in the past. I could have died before the cancer from such just the same as I could have died with such while having cancer but how I was treated and the way things were dealt with was 90% much more positive while clotting and cancer.
Now I have a question to ask any of you ladies with advance cancer. I am one of the 16% of cancer patients who is now dealing with extreme sweating, one, it can be my medication two, it can be from the morphine, or three something else. I've read that Tagamet given can help bring this down. Tomorrow I see my Oncologist and Palliative Care Doctors and they are aware that I have been having sweating problems but now they are extreme. I have to change my clothes every three to four hours because I am soaking wet. I sleep with cotton layer clothes and on towels but they are all soaked after three hours. I take a shower and dry off and then I have to lay down with a cotton terry bath robe to soak up the sweat from taking a shower. Walking to the car and sitting while going to the doctor I have to change my knitted caps from they are soaking wet and bring a change of clothes to change in before I see the doctors. This is so bothersome and I have a cold now from getting so wet and then cold I keep my house at 65degrees because I sweat but then I get cold and shake from all this and have to drink more than 6 to 8 16oz bottles of water because I'm worried about becoming weakened from being dehydrated from all the sweating. So I was interested if any of you are having the same struggle with such?
So glad to se Rosevalley posting and feeling somewhat better and Blondie how are you feeling? I was hoping to hear some more follow up from Sky's daughters. How kind of them to let us know that their mom is not doing so well but still hanging on.
I'll post later in the week after I see the Oncologist and see what she has to say with my current situations and speak with Palliative doctors on how I'm not Spiritually there in regards to dying in the next couple of months. Yes I am weak and things physically are such a struggle but I have hope that my strong mind and self will be able to deal with all this and still live another 6 months or more in my mind. I just don't see myself dying in cold months but more by sitting by the ocean or in my backyard on a sunny day. I don't want to go dying in bed. How much of this will I be able to control in the end that is the question I play with mentally. Wanting to go out my way.
I admire that David Bowie went out his way, and had the strength in the end to put out a new album, along with the Lazarus video which I watched and felt he knew how he was going and had somewhat of a vision of such and then did this video to leave behind of how he felt about death and dying what a gift to all.
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M360. Sas said her DH had terrible sweats. Mine aren't any near as bad as yours but it's a terrible cycle. I hate the chilling.
I think all mothers are strong. Those with special needs kids are the strongest. Hope you get your wish for a warm and sunny day.
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Dear M360,
I'm so grateful you shared more of your story. Your name comes up often, but I was uncertain who you were and what you're facing and why you're so loved here. Now I know you a bit better - thank you!
I so relate to the first part of your story, because I too have a rare genetic condition that trained me from youth to deal with pain, illness and letting go of expectations about how "life is supposed to be." It also predisposed me to bilateral breast cancer at age 34, 25 years ago. I actually celebrated that diagnosis because for the first time in my life, I could see doctors who'd seen patients with what I had. I could meet other women with it. I could get support and affirmation, instead of dismissal. And I could research my medical options - with actual statistics instead of depressing case histories.
I think it is weird that our society privileges some suffering over other types. Yet, for persons living through whatever their problems are, those problems are most real, often overwhelming to them.
M360, I also relate to needing to be here for your daughters. Rose Valley and Sky Lotus also have such strong wills to survive and thrive, to stay alive for their offspring and others who depend on them.
While I chose not to have children, I've others who depend on me and I often feel I'm encouraging them to be independent, empowered, resilient and strong beings - this is drawing out their inner strengths and problem-solvng abilities, not giving them something new...just some tools and self-confidence to go on once I'm gone.
M360, I am holding you in loving, healing light, Stephanie
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Hi Brenda,
Blessings as you navigate your difficult road trip. Take good care of your precious self and tap into the support of others who care too.
It's a huge challenge for me to turn over a lifetime of self-care to my hospice team and my Circle of Care (friends and family). I continue to let go and fall into their loving embrace. Then catch myself and wonder if we really can do this dying thing together. They also are responsible for my after-death at-home vigil, funeral and dismantling my cottage. Trust!
This is a chance to heal a lifetime of self-reliance and accept the inter-being of all beings.
Brenda, looking forward to continuing this conversation with you, when you've regrouped from your trip.
Wrapping you in tender care!
One breath at a time, Stephanie
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Health update on me...what a joy to report that I've followed Rose Valley's suggestion and am draining a liter of ascites daily, instead of 2 liters every other day. I knew the implanted drain was better than less frequent outpatient drains of larger volume...but daily drains have really smoothed the roughness. It's great to have an improvement during this late stage of the cancer experience.
Daily draining means the ascites cause less nausea, swelling, shortness of breath, discomfort, loss of appetite and writhing in pain. Draining a smaller volume improves how I feel afterwards - ravenous, rapid heart beat, low blood pressure, feeling wrung out. I seem to have better fluid, electrolyte and protein balance with daily draining too, but don't check because I'm on hospice.
Rose Valley, I'm giving a shout out for you - I am so very grateful for your excellent example!
Sending my best healing regards for Rose, M360, sky lotus, Brenda and all others on the rough ride. May your ways be soothed and smoothed in all ways!
And may all here continue to find healing and love during your cancer experiences.
Much gratitude for all at bco, Stephanie
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An interesting article:
Experiences, Dreams, and Visions: Easing the Patient With Cancer Toward End of Life
Excerpts:
End-of-life experiences (ELEs) occur frequently in people who are near death and can take different forms. End-of-life dreams and visions (ELDVs) are one type of ELE. These often manifest as visions that occur during a wakeful state, or dreams that the patient remembers after sleeping.
The most common dreams and visions included friends and relatives, either living or deceased. The patients found that dreams and visions that featured the deceased (friends, relatives, and animals/pets) were significantly more comforting than those of the living, of the living and deceased combined, or of other people and experiences. As participants approached death, comforting dreams and visions of the deceased became more prevalent.
NOT DELIRIUM
Clinicians should note that ELDVs are not hallucinations, and they are not the result of medications or confusion. These phenomena play an important role. Their content holds great meaning to the patient who nears the end of life. Patients who experience these phenomena are not delirious; they think clearly and are aware of their surroundings. In contrast to patients who are in a state of delirium, ELDVs typically occur in persons who have clear consciousness, heightened acuity, and awareness of their surroundings.
Although the phenomena bring a sense of impending death, they also evoke acceptance and inner peace. These are crucial distinctions, since if a dying patient with ELDVs is considered delirious and is treated as such, the medication may interfere with the comforting experience that ELDVs can bring to the dying process. Not being able to derive that comfort at the very end of life could lead to isolation and unnecessary suffering for the dying patient.
"The results of this study suggest that a person's fear of death often diminishes as a direct result of ELDVs, and what arises is a new insight into mortality. The emotional impact is so frequently positive, comforting, and paradoxically life affirming," the hospice team explains. The person is dying physically but emotionally and spiritually, their identity remains present as manifested by dreams/visions.
"In this way, ELDVs do not deny death, but in fact, transcend the dying experience, and present a therapeutic opportunity for clinicians to assist patients and their families in the transition from life to death, thereby providing comfort and closure."
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longtermsurvivor-
That's a very helpful post. above.0 -
Rosevalley, always happy to be helpful - especially for you, my friend.
You got me to sign up to bco and Torridon got me to start posting.
She, you and I share the ascites and indwelling drain. I've just learned that she died yesterday, so it's just you and me for now.
I'm saying metta, loving kindness, meditations for your well being, dear Rosevalley.
Keep taking it one breath at time.
May you be safe, happy, well and at ease.
May all be safe, happy, well and at ease, Stephanie
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I don't know where else to write this but all the losses are taking a toll on me. I'm so saddened. How does one grieve? I did not know these women, but they are a part of the universe where we are all struggling and hoping. I am so affected by Torridon's passing, and Holly and another woman on another board, and Joey Feek who is dying. And more. Death is a part of Life. We'll all get there, but it's so hard. So many young women. I'm just rambling and tears streaming.
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G-d, letranger, I am so sorry. It's the price of love, and what happens when you have a gentle heart...
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A dear friend of mine passed away from peritoneal mesothelioma a few years. He had a very active CaringBridge page as many of his old friends had moved and it was a simple way for us all to stay in contact. Just a few days before he died, he shared some fascinating dreams and visions that he was having. They were always peaceful and a comfort to him, his family and friends. We knew he passed away at peace because of his comforting visions and dreams.
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letranger- I feel your pain grief and sorrow to the marrow of my being. It is is so hard to have love and empathy for others and not feel their loss like our own. My 2 daughters are home this evening. (In bed now) My one developmentally delayed daughter gave me a lovely drawing of Buddha, lotus, koi and Chinese characters she copied... happiness I love you" she wrote. It's beautiful. SHe hugged me...I melted. It's times of such warmth and sweetness life is so precious. I know it ends. I know not to fear death but I love them so much that it just hurts the idea of leaving.
I cried and cried today, buckets of tears enough for all the cancer patients and children who love them. Maybe our grief and the power of our love somehow sustains them. Maybe sometimes we need to cry. Peace to you all.
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Oh dear Rosevalley, you are not alone in grieving our dying.
It's been vitally important to me to recognize the love I've sown in this lifetime and the loss my loved ones will feel when I'm no longer enfleshed, embodied, articulate, able to touch and write and share with others. It's painful to consider (consult the stars) and know I won't be physically present for loved ones' major and minor life events - celebrations and tragedies. I will be missed.
Long before breast cancer, I knew I was likely to die young because of my rare genetic condition and chose not to have children - to neither pass it on nor to leave grief-stricken children. I shielded my potential children with my own body, absorbing the psychic loss of procreation.
Yet, my leaving will touch others. And I mourn that.
In her poignant post, The New Year, breast cancer blogger Sherri Fillipo shares:
"This leads me to why I have not been writing. I am in the worst mental place as I have ever been with this disease. If I have come across all chipper about it, I have done you a disservice. So, I am telling you now, I am mourning my life. I am weeping over my son losing his mother. I am grieving over a marriage which is still young and tender. Did you know?"
Maybe part of being adults and parents is protecting our younger, more vulnerable loved ones against the harshness and suffering of their loss of us...we absorb the brunt of the blows.
Life, cancer, death aren't fair, but children want to believe it is. They want to believe their love can cure us. And maybe their anger at us caused our suffering and death. Like there's a clear cut cause-and-effect for everything and if they can just figure out the game, they can play, maybe win us back again.
School, work, consumerism all teach us - what you get out of life is what you put into it - that fairness, rules, teamwork, form and engagement will always achieve a desired outcome. Not so, but still appealing to the child in me.
Rosevalley, I've come to love your whole, authentic you!
"I cried and cried today, buckets of tears enough for all the cancer patients and children who love them. Maybe our grief and the power of our love somehow sustains them. Maybe sometimes we need to cry. Peace to you all."
You remind me to accept the whole experience of living and dying, even when things aren't what or how I want them to be. Even when my feelings are a jumble of beauty, loss, sadness, chaos, fear, reassurance, love, anger, acceptance. I strive for humanity, wholeness, embrace and the release of death.
So much love for everyone reading, Stephanie
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Sooo very true what you shared about kids. When we give our heart away then love multiplies. I hope my kids understand that the more love you give, the more love there is... like lighting a flame. The first candle is not diminished by lighting a second or a hundred. Sending out lovingkindness to all. rosevalley
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Thank you, Tomboy and Rosevalley. I grieve so deeply. But I can only do it here in cyber-world. No one in my "real" world understands losing BC sisters, ones who only have a screen name like me. But here I can say what I fear, feel. I am connected to you, those who post. These bonds for me are strong. I read your words and "see" your world of family and life.
Sometimes I think the boards are too emotionally hard on me. I bring it upon myself. But only here can I tell you that I cried last night, too. No one else knows. I must have cried on Rosevalley's shoulder, the stronger one of us. I don't let my cancer let me cry. But scans are next week and new chemo starting in 10 days. And with my husband out of town, I let it out.
I know Death will take me, eventually. I hope it will take me kindly and peacefully. But I am dodging it as long as I can. I am fighting alongside others. I am looking into all avenues to arm myself against these rogue cells. I am a brain-metser so little can cross the BBB and WBR is my RO's favorable option. At this point I am declining it and I am not sure if I will ever accept it as a form of treatment.
I am using some of my time creating and strengthening important connections with family and friends so they will be able to pass my love on to my son when I have to leave him. I understand, Rosevalley, the bond we have with our children. It is like chains, so strong. I feel like my son is my limb, my heart, my soul, my world. He is born of my flesh and blood. I am hoping to be here for many more years. But it breaks my heart when young women felt the same way as me and are no longer here.
Thanks for reading.
I send loving thoughts to you all. letranger
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Rosevalley, letranger, and all others who are feeling the unbearable heaviness of death at this moment, I can only say I am listening, and I feel the profound sorrow. Who will not cry, when the departure is one way? Who will not be tearful, when the hands of the loved ones can no longer be reached? Death is the ultimate sorrow of all kinds. It is the keystone of all religions. It inspired and underlined all the masterpieces of literature and arts. The terror of death is so powerful that it can not be talked about. It can only be felt in silence individually and privately. It can only be expressed indirectly in forms of religion, literature, and arts. Cry, Rosevalley, for crying is the honest expression of the sorrow which is by nature sublime! Let's cry together! We live, and we die!
Sun setting in Santorini Island, Greece. Taken 6/9/2014.
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I so love that all o u come play n party with us. I depend on the virtual company these days to help
With. The loniness.the deams sort of scare me, ithink that will get really scared
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Author, poet and biologist Eva Saulitis died of breast cancer earlier today.
Here's something she wrote near the beginning of her MBC experience, Wild Darkness
Here's the most recent post at her Caring Bridge:
"I died. The words pop out on the page. I died and the mountain remained. I died and baby leaves on the birch trees broke through their waxy casks in what was once my yard. I died and the nettles pushed up though layers of fallen birch leaves. I died and on day a wind came and the leaves blizzarded down. And the snow came, and the snow went. I died and you died and the ever-moving earth continued on and on. We died and the earth continued and changed. And so-living, dying, dead, reborn in other forms--did we. There is a future. It is beyond us, like the oval of the blue behind layers of mountains, beyond weather. It is not ours to have or to hold. There is a future, and it is not us. It is the mountain. It is the earth."
My heart is flowering open in love and loss...what an amazing being Eva was. Is. ~ Stephanie
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Oh, LongTermSurvivor, thank you for that. See all the good you have done, bringing us such beautiful things?
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Blondie, I am so very sorry that you feel lonely often and sometimes scared. Who will not? I am sending those creatures I found in my back yard to accompany you. I am sure outside your home there must be many of them. They do not do human speeches. But their very existence surrounding you is a comfort. Thinking of them, thinking of Eva's blue sky and mountains, peace will be with you. Hugs and hugs ...
Every spring a different bird couple will occupy the nest on the yew tree in front of our front deck to have their babies. We call the nest the bird hotel. hotel nest is so close to the deck, we could reach it with arms. We could pick up their eggs and examine them. Of course we never do that. 
This little thief is consuming my tomato. I was puzzled upon never seeing any red tomatoes on the tree until I saw this scene. 
This fatty is trying to get on our deck. A raccoon? 
The deer are so alert and quiet. They usually visit our yard in the very early morning, moving in the darkness like clouds. But this time they seem not to care.Stephanie, thank you for sharing your thoughts on Eva Saulitis' poetic treatment of dying and her passing. What a beautiful acceptance!
All, good night and sleep well!
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Wow, longterm, you really share some amazing stuff! I want to read more of Eva's work/words. But coming from you, it just makes it extra...special. You really have a spectacular talent with connecting with people's hearts and emotions. SOmetimes I just re-read it on my computer screen because the words are so beautiful coming from you.
Blondie- you are not alone. We are here. Wrap your arms around yourself and give yourself a big hug from us.
Xavo - seriously, is that your backyard. How beautiful! Love pic sharing!
xo letranger
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I am so blessed to have bunches
allof u in my life.
Wthat about rosie who has heard from her?
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