A place to talk death and dying issues
Comments
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Dunesleeper, I agree with pajim/Pam about seeking out other people who might offer helpful guidance about death and dying. With regard to social workers, you might find the best option is a master's level social worker (MSW) because that SW will have more counseling skills. Many medical MSW's will have special training in end of life issues, which might be very helpful to you. I've found it helpful to read various books, from the very clinical to more spiritual offerings, but there are times when we just need to explore ideas and concerns with a live human being* sitting right in front of us! (*Especially a skilled live human being.)
I thought of this thread this morning as I read a story from NPR (http://www.npr.org/blogs/health/2014/12/17/371428585/wonder-abides-even-for-a-skeptical-doctor). That article was about spontaneous remission and included the following:
"We know very little about spontaneous remission except that it's extremely rare. Most doctors refrain from mentioning it to avoid giving false hope to patients. But the allure is undeniable.
Several oncologists told me that they'd heard of the phenomenon, but never seen it themselves. University of Pennsylvania oncologist Ursina Teitelbaum had a completely different view. 'A miracle for me is a peaceful death not in a hospital with your family and loved ones around,' she told me. 'It's sad that this is still too often a miracle.'"
My immediate reaction was to think that it doesn't have to feel like a miracle. Perhaps with adequate communication and planning, we can have a peaceful, "good enough" death--one that we choose to the degree possible for ourselves. I realize some circumstances are beyond our control, but we need to remember: many circumstances are within our control.
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I agree with the suggestion that a social worker (preferably one from a cancer clinic) is a great choice - I have been seeing the MSW at my local clinic and she is wonderful - I've only chatted with her a few times and once on the phone when I was having a huge meltdown - she makes me feel in control and emotionally strong and she has a great sense of humour to boot.
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dunesleeper - MSW, PHd clergy they will all have something to offer with somewhat different perspectives. It depends on their training and philosophy. Bottom line, no matter the initials after their name - find the fit that is right for you. And if at first you don't succeed, keep on trying. It has to be a good fit for you, listener, no judgement etc.This is a difficult time of year for all of us. I think the will I be hear next year question looms very large. I am glad you did not have a trip to the hospital
Be well
Nel
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I used to work for a Catholic hospital (I am not Catholic), but was very impressed by the Priests who worked with the patients. They were exceptionally skilled and fabulous listeners! We also had some stellar social workers who were also exceptional with patients. All you had to do was ask. I remember one patient covering her ears when there was an overhead prayer and I wondered if that could be so offensive that one needed to do that. The prayers were very general. I rather enjoyed them. I worked with a nurse who was Jewish, mother of 6 boys (she's up for Sainthood in any religion) and she said when they prayed overhead she looked at it as universal. It didn't bother her either. I have a gorgeous song on my I-pod - Prayers to Krishna in Sanskrit with tablas, flutes and Unnikrishnan singing that is so beautiful. Heartfelt prayers I think transcend language and culture - they are powerful expressions of our humanity.
Dunessleeper- I hope you find someone to talk to that makes you feel comfortable.
I find that I weave in and out of wanting resolution (death) to this never ending cancer journey. I wonder then why as I gathered up wrapping paper for next year and was picking up little Christmas gifts for the bags I make for the kids at the homeless shelter... clearly I am motivated to keep living. Hmm.. When I get too achy and painful then it makes me despondent and down... then I yearn for relief no matter how drastic. I think that's universal. Pain is the great equalizer - hits rich and poor the same, transcends religions and geography and cares nothing about age - no respect for the very young or elders.
Neat article Brenda. I have seen some amazing things within my own family. A peaceful death should be our birth right not a happy exception!
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I don't have traditional spiritual beliefs but occasionally find solace and comfort through the support and words of those who do. The person who provided the most support to me, outside of my husband, when I was first diagnosed with breast ca in 1995 was a female chaplain who worked in the hospital where I also worked. She was incredibly insightful and caring, and she cared not one whit that my belief system didn't align totally with hers. A few years later I found support through a very motivated licensed clinical social worker who had no major experience with medical illness but had the heart for learning how to help someone who did.
Rosevalley, your comment, "I find that I weave in and out of wanting resolution (death) to this never ending cancer journey" really struck a chord with me. I've been walloped not only by breast ca but also problems related to treatment, diagnosis of a rare vascular disorder that has created its own complications (including inability to tolerate hormonal therapy), and, most recently, symptoms that appear to be of cardiac nature and that have me in the midst of a cardiac work-up. Some days I've felt so weak and tired as well as immobilized by pain that I have thought I might possibly welcome the end of my life if it weren't for my deep attachment to my loving, kind, and precious husband. Other days I am more determined to keep putting one foot in front of the other, because my quality of life lifts some and my heart and spirits lift as well. I consider this experience one that will help me to understand better that time in the future when I've had enough and when it might be the right time to "go with the flow" and peacefully accept the end of life.
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Thanks to everyone for chiming in with thoughts about counseling. They are all very good ideas.
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You could also try journaling, meditation, listening to music, creative art, bosom buddies (or other bc support groups) or reaching out here. I listen to Deva Premal's "Gayatri Mantra" at bedtime. Seems to help me stay centered. Hope you find what brings you peace0 -
I wonder if anyone besides me questions why this is happening to them? If I only thought there was a purpose for my suffering, I would gladly bear it if I were helping someone else. Seems like every month or so something new is added to my list. Now I need a colostomy, if my oncologist agrees. She is worried about infection, as I have peritoneal mets.
I know that good things don't happen to good people, and bad things don't happen to bad ones. I just wish I knew that my suffering would help someone else.
Anyone else feel this way? Wilsie
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Dear Wilsie - first of all so sorry to hear of your latest struggle. I agree that sometimes bad things happen to good people and with mets bc the bad things just seem to keep on coming. I think that perhaps some of our suffering does help others when we are on BCO and offering advice and comfort to the newly diagnosed and able to help them with tips vis a vis se's and what to ask oncs etc., it isn't exactly "world peace" but it's all we've got.
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I just figured I'm paying for my mistakes. And Wilsie, I too am sorry for your latest struggle. If you need a colostomy how can they say no to it? That is some serious suffering you are talking about there.
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Hi, Wilsie! You are posing a deep philosophical question, one I wrestle with often, and have since I got chronic pain 18 years ago. I have a theory which I'm not married to. It goes something like this.
Some Buddhist traditions believe in bodhisattvas which are beings who have reached enlightenment, but who choose to come back into the world to take on suffering for others.
Then, of course, we have the Christian tradition that Christ came to suffer for our sins, and we know what happened to him.
Then there's little ol' me who perhaps decided in my spirit state to come and suffer chronic pain, and even breast cancer, so that someone I cared about did not have to. Better yet, that someone I really can't stand didn't have to.
Just something to chew on on a New Year's Day.
xoxoxoxox
Calico
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I'm so glad to have found this discussion. I see it's actually been running for some years now. I've seen my fears and thoughts echoed over and over. When I was diagnosed with stage iib bc there were so many ladies around who were in the same boat. Enter stage iv and suddenly it's an empty ward. People generally don't understand the different stages of cancer. When my friends and family found out that my cancer had spread to my bones and lungs they were like, "Your're a fighter. Don't worry you'll get through this. Just believe and stay strong. You have to stay positive." Yeah, right! Here I am a generally healthy person with this thing eating me up alive. How does one wrap your mind around that? How do you not read and hear the stats and have no fears? Like so many others, I have a son of 12 who is afraid of losing his mommy. He wakes up in the middle of the night, crawels into bed with me and proceeds to cling to me begging me not to die. Having friends with a mom that is busy dying of bc does not make it easier. I'm afraid of voicing my own fears to my husband and adult children as it upsets them terribly. I also don't want to sound morbid. I stood on the beach last night watching the fireworks and hearing the laughter and all I could do was quietly cry and wonder whether I'll be here next year. While others are celebrating and speculating about the year ahead, I know that mine will be one filled with treatments and scans and fear and pain.Oh yes, add tothat just the general feelings of worry and fear for your loved ones and......yeah. I'm so terribly sad about the loss of life expectancy. I'm angry that not enough is done in terms of research for us. I can't understand how in the day and age we live in there's still no cure for cancer. I don't want to write letters and note cards to my husband and children. I want to be there to tell them myself how much I love them or wish them for their birthday. I want to see my 12 year old finish school, meet his wife, see him get married and hold a grandchild from him. I absolutely detest it when people say things like, "None of us know what the future holds." or "Don't worry you'll be healthy and in attendance when your son gets married." or "Focus on all the good things in your life. You know, things could always be much worse." I have cancer, I'm not brain dead. I know all those things and before September 23, 2014, I would and could have agreed, but that was all before I was sucker punched with stage iv bc and a 22% survival rate after 5 years. Every single time I see that So-and-So is an Angel my heart is filled with an incredible fear and sadness. I really wish that someone could wave a wand and make it all go away. Besides, I AM afraid of dying. It's not like I've done it many times and know the whole of it.....
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Annie, you put a voice to many of our feelings. I wish I could comfort you in some way, just know you are not alone. I am not a young mother, but am 70 and was very active just a year ago. But still, it is very hard for me to need help doing the smallest task, like changing a bulb. I cannot walk on my own more than 100', and I don't know how much longer I can live on my own.
So, all of us have had to give up things others take for granted. It is now 3 years after my recurrence, and my onc told me that average life expentancy was 2 years when diagnosed. So I guess I should feel lucky. Holidays are hard on us all, i, too, was wondering if this was my last New Year.
I am working on an "attitude adjustment". I will try to be grateful for my other blessings. 2014 was not so good, 4 different treatments failed. So, maybe 2015 will be better! Wilsie
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Wilsie, Thanks so much for the encouragement. I am so sorry that things are not going so well with you. I suppose all we can do is take one moment at a time . It was just so nice to be able to vent to others who understand . I pray that your oncologist will find a treatment that will work wonders for you
Annie
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I don't post here often, but I take so much from what everyone says. We are not alone, we have each other. Others may tell us to stay in the moment, stay positive etc. The strength it can take to do that can be overwhelming. But I think we all do an amazing job of moving forward and need to give ourselves a big pat on the back. We carry a huge load that unless you are in our shoes, you can not understand. So a good new years to all of us0 -
Hi, Annie, my heart and hugs go out to you as they do to everyone in our situation. This month marks 5 years I've been diagnosed with Stage IV. The way I describe it is I think we're all born in an inescapable tunnel, and someday the light at the end is a train. What I hadn't counted on was that I'd have to listen to the whistle blow for so long. That has been the excruciating part for me.
The only real benefit of the longevity I've been given (I would never say enjoyed) is that it's given me enough time to get used to the idea of dying. I can remember crying to my husband and telling him I didn't know how to stop breathing. I just recently had the thought that I may not know, but my body knows. It's programmed in its DNA. My wish is to be peacefully sedated, and to float away on a painless dream. My husband knows this is my wish, and he'll do what he can to make sure it happens. I will not fight desperately for my last breath because to me, that is the way of terrible suffering.
Your diagnosis is so recent you've had very little time to adjust to it. The worst of my suffering has come from my own mind. My oncologist must understand this because when I expressed my fears to him, he would simply say, "Live." It was like a benediction, the message being, "Don't die from torment before you have to die of the cancer."
I am deeply grateful for the others on this thread who are willing to share their thoughts and concerns with us. They give me comfort and strength.
xoxoxoxo
Calico
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Hi Calico,
Thank you so much for your post. It's amazing how you know where I'm coming from. My mind keeps turning things over and over. I wake up in the mornings with such a feeling of disbelieving shock, I can't even begin to describe it . I then read some of the threads and draw courage from it. Maybe if I can stay alive for at least 5 yrs there might be a drug that can buy me some more time. Maybe I might stay alive for a cure. I know that I have to leave this world some day but I'm 45. I'd like to live for many more years and I certainly don't want to suffer out this world. I always thought my faith was so strong and grounded. I guess I was wrong. So now I pray that God will teach me how to trust Him. I'm so grateful to know that there are other people out there who understand .
Thank you all so much
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Annielam - you said it all - and very well too - it's good to have the people here to vent to because they are the only ones who really understand.
Wilsie - I am in the same "boat" as you - I am 69 years old (I used to be years young) I live alone and the lack of energy and treatment and drug se's are slowly "doing me in" - my biggest worry is not dying but having to give up my independence.
This is the first year where I didn't want to say Happy New Year because like so many of you I was wondering if this would be my last so I'll just say let's all have a Good Year.
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Calico - "Don't die of the torment before you have to die of the cancer!" So true!!! I watched my Grandmother die of IBC slowly over 3 years. We all took turns taking care of her and slowly watching the cancer move into her brain, bones and organs..miserable death over 30 years ago. But if you are a just a kid it makes one helluva impression! Kind of hard to shake that out of your mind. Then I have floor nursing experiences to add to my childhood memories of cancer and death! Whew what a mix. I never worked hospice so I have only family and friends to attest to that and what I have seen/ heard I like. I have my own little house of horrors in my store consciousness!
The other day I was musing... (I do this and probably shouldn't try to put it on the boards but..) what if we had the ability to mindfully cure ourselves, but didn't realize it? Could that be the explanation of spontaneous cures? I also mused that what if we decided to die and could just as easily lie down and take leave of our body. Perhaps we have the ability all along and no realization that we could. We suffer because of attachments of this I totally agree with Buddhism. The evidence is overwhelming. Still I know that we are not our bodies. I can cut off your legs and "you" are still here. I know that "pain" is just an impulse running along a nerve, brain decodes and we experience pain. I cut the nerve and you have no sensation of pain or the phantom pain of amputees along the same lines. Wonder if we can mentally cut it, surely seems possible. I have told myself when I get overly achy- "just an impulse down a nerve - no more, no less." I can defuse much misery this way, but not all. There is so much we do not understand about the mind body connection. I don't believe we die but continue on changed; that comforts me.
I get frustrated with my inability to do as much as I did before I was diagnosed. I was 48 at the start of this and am now 56. I grieve over the loss of my mobility to hike and walk for hours and I miss my stamina. In short I am "attached to the way I was 8 years ago!" So I suffer frustration and mental anguish. I feel betrayed that my joints feel like rusted old wagon wheels from these damn drugs!!! I think as we age we all suffer the frustration of less independence and mobility. Breast cancer seems to speed up the aging process and we get a condensed version!
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Ceasing to exist. Why should that be so frightening? I can understand being afraid of pain and poor care and even abuse at the end of my life, but not-being? That one has me stumped. I really like this thread, so you might read me writing about fear here, but I don't have it often. Just once in a while. Sometimes I think if I had had children or written a book or produced a lasting piece of art, I would not have such feelings about non-being. But who knows. But we came from something. We had a soul even in the womb (I believe). So what happens to that soul? I don't believe it just ceases to be. I don't know what comes after, but it would actually be nice to get rid of these knees that hurt so badly, the post nasal drip, the being too hot or too cold, now the pains in my ribs, the stiff neck, the bad hair days, the stinky feet. LOL. Yeah. I don't mind getting rid of that stuff. I hope comes next is good. A huge bonus is if I get to see what all the craziness on this planet is about, how it fits into some grand scheme that is hopefully nice.
I'm so glad we have this thread to be able to share our thoughts about this. Everywhere else they want to focus on living and fighting this disease. I'm all for that too. But I do need to talk about this and don't really have anyone I can do it with. I will be finding someone though. And even though I don't believe in the Catholic Church, I will be making an appointment for confession. I was raised with it, and I think I need to do it.
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it was so much easier to be in denial when I felt relatively well. I don't feel good, and don't know the reason. Pain in my midriff, haven't always felt it. I feel my ascites is coming back, and that is frghtening. I have appointment on Tuesday, so it can wait. All I want to do is sleep. I am discouraged. Thanks for listening. Wilsi
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I understand Wilsie. Sleep is all I want too. What is ascites? You have enough on your plate!
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ascites is fluid which accumulates in your belly. When I was first diagnosed, they drew 5 liters of fluid off several times. It did not stop accumulating until treatment was working. That was three years ago, and it has been my biggest fear. I have peritoneal mets.
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I am following all these posts. I also have peritoneal Mets affecting kidneys. Taxol has worked the last 7 months but we all know nothing works forever. Sigh. Have made many life ending decisions the last year. Will, moving assets to sister. The whole Bit. I wonder what 2015 will bring. Mets are like always putting fires out and you hope your body stays in tact. I want to stay alive as long as I can but with quality. Bottom line. Still on taxol. Scan jan 19. Will know more then. Hang in.
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Wilsie, please let me know how it goes Tuesday.
I didn't know about peritoneal mets. I only knew about bones, liver, lungs, and brain. This thing is just full of surprises.
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Yes, please let us know....
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Wilsie- prayers for you this coming week.
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Thanks, everyone. I will keep you posted. Wilsi
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Love this thread..just had my 5 years, whoopie, every holiday i wonder if it my last of that particular one...i don't enjoy much anymore, cant do much like the mall unless people go, cause need the wheelchair. It just feels like i am waiting to get sicker n die. If i had mone i would try to travel with the wheelchair. my kids r in denialcn no help at all. Am on oxygen 24 7 cause of the lung mets n the lining of the lungs. I chose in july to stop chemo, the se were awful n my qol was non existent, which it is sort of better not sick in bed w4 7 from the chemo...
I know there r people worse off then me...it is what it is
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Hi, Blondie and everyone, I relate so much to everyone's shares. Blondie, I don't think I'm very far behind you. I think there's a very good chance that I will choose to stop treatment this year for the same reason as you. I'm tired of the side effects, tired of the battle. I have lung mets, too, and my breathing capacity has really diminished over the last several years. Do the simplest things and I end up with labored breathing. I spend a lot of time just sitting at the computer and staring out the window. It's less stressful than trying to "do stuff", easy stuff, that now feels so hard.
I saw my onc yesterday and he remembered that I had talked to him about stopping treatment. He's pulling me off the Abraxane, sending me for a CT this week, and will see me next week for more discussion on next steps. I don't think he's ready to give up on me. He asked me what my husband thought about my stopping treatment, and I told him which is he'll support me in anything I want to do. The onc's reply was, "Typical male! Whatever you want to do honey!", I actually thought this was funny (as in funny ha-ha). I think part or me, maybe a large part, wants to beat the onc to the punch. In other words, I want to stop before he tells me there's nothing else he can do. Somehow, that feels easier for me. Maybe it's just a control issue.
Anyway, the sun will come up tomorrow no matter how I feel and life on the planet will go on without me. That's comforting in a strange way.
xxoxoxoo
Calico
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