A place to talk death and dying issues
Comments
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Calico: Thanks for showing us such a graceful and elegant way to face the end of life. Under the Buddhism theory, we are all going to the western pure land of ultimate bliss (Sukhavati). Wish you peace and pain free.0
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So beautiful, Calico...the purity of your intention is very clear.
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As your sister, this also gives me peace. Thank you, Calico. Love you.
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Interesting reading material from today's New York Times:
http://opinionator.blogs.nytimes.com/2015/08/14/ze...
Tina
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Calico
Thank you. I only wish you peace and comfort. You are showing all of us how to move forward into the unknown.
Diana
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Calico, if your sisters don't understand, that is on them and not you. It's a lovely letter, and if they are anything like you, they will totally understand.
Peace be with you.
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What an interesting and touching conversation has been flowing over recent weeks. I thought of you all each time a post presented itself on my phone while I was on vacation and then for the last days as I have been recovering from vacation.
One of the thoughts that popped up was about regrets we have about actions we wish we had not chosen or missed opportunities we did not seize. It's a quote by the philosopher Kierkegaard and I have treasured it for quite some time: Life can only be understood backwards, but it must be lived forwards. How often we judge ourselves, looking back, by what we know now about ourselves and about living. How hard it can be to accept that living life inevitably involves evolving to different perspectives and values that we often did not understand or hold dear way back when. I try to look back with compassion for my more naïve and less experienced self, and that's been a very helpful outlook.
Years ago when first dealing with breast cancer and struggling to make sense of my fear of death, I read a book by Stephen Levine that suggested living each day of a year as if one was preparing for death. I found that doing so helped me to clarify how I wanted to live my life. And along the way I found this quote from Schopenhauer: Every day is a little life: every waking and rising a little birth, every fresh morning a little youth, every going to rest and sleep a little death. So in learning to face the eventuality of death, I learned how to live, and in learning how to live more fully in each day then letting go of that day, I learned how better to face the prospect of death. That doesn't mean that I think I possess all the answers, just that I have more informed insight now about what is important to me with regard to living and dying. And not everyone wants to develop that insight, but it's also one of the many reasons I continue to show up here.
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Hahaha! good one CoolBreeze! Brad Pitt? Why not? I too hope to be one of the lucky ones and stick around for awhile but have started to give cetian things to the people I want to have them, clean out clutter, shred old paperwork. We are women to the end!
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And, Calico, what an interesting dilemma you shared, then your effort at resolving it as well. I hope your sisters honored your intentions and that your letter has led to some respectful and compassion communication among you all. Like you, I am clearer about my wishes for my end of life, although I have come to terms with the fact that what I might expect to be my "end of life process" might not resemble the reality I experience. I've communicated my wishes to my husband, and I have utmost trust in his willingness to follow my wishes, but I've also assured him that he will not be betraying me if he feels he must make a choice that he is not sure I would have welcomed. I do not want the love of my life to be haunted by doubts over what he did or did not do. I trust him to do the best he can.
You raise an interesting point about how much pain any one person can carry as that person is dying. We all are so different, aren't we? What might be painful to me might not be painful to someone else. I have had the experience of being present with a number of people at end of life. Although in many of those instances I experienced grief and sorrow, I was also very deeply moved not only by the opportunity to show love and compassionate presence but also by being able to witness the very positive impact of my loving presence. Those opportunities were fulfilling and helped me to cope with the process of bereavement. I try to remind myself when I am contemplating what my dear husband and other family members might feel as I am dying that they may find meaning and comfort in being there for me. Let me be quick to say, this is what is true for me, but I know it to have been true for others as well. And, again, the values and beliefs of the person who is dying are paramount; I am not likely to "allow" (or wish for my husband to "allow") certain people to be present when I am actively dying or certain rituals (unimportant to me) to be performed simply because those rituals give someone else comfort.
One other note: I have seen caregivers, and most recently my mother (in her 70's), become exhausted by the process of providing care to someone at end of life. Some of those caregivers suffered irrevocable harm to their physical health. I also have witnessed some family members becoming so involved in the caregiver role that they missed the opportunity to be present for their loved one as devoted spouse, parent, child, sibling, etc. This has been the case even when the hospice team was on board, because the hospice team can only do so much. My intention is for my husband to receive whatever assistance he needs in caring for me at home, if we can manage that through the end of my life, and to rely on my total support should he make the decision for me to receive residential or in-patient hospice care.
As always, we often try to walk a tightrope, balancing the needs for ourselves and of those that we love. It's often challenging, but being true to ourselves, genuinely open about our wishes, and reasonably flexible about how the future may unfold helps us to feel more secure when we leave that tightrope behind.
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Love you, Calico.
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"Life can only be understood backwards, but it must be lived forwards". How often we judge ourselves, looking back, by what we know now about ourselves and about living. How hard it can be to accept that living life inevitably involves evolving to different perspectives and values that we often did not understand or hold dear way back when. I try to look back with compassion for my more naïve and less experienced self, and that's been a very helpful outlook.
Brenda, this is such a loving way to look at oneself. I have a tendency to mentally scold myself for past mistakes, never taking into consideration the less experienced version of me was making decisions based on what I knew at the time. I makes great sense, and I will try to be more mindful of that.
CalicoCat, thinking of you this evening.0 -
Brendatrue: beautiful, thoughtful and fitting words of wisdom. thanks from Carolyn from Music City
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Tina, I read the article from the link you,provided and found it very interesting and insightful yes, seems many could benefit from a zen type hospice
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Interesting article I do not want to die at home, but certainly not a hospital!
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Brenda, I love the quotes! "Every day is a little life…" particularly struck me, as that is exactly how I've weathered this stage iv storm. So much so that my friends tease me about it because I wake up (mentally at least!) as if I don't have cancer. By bedtime, it's another story, but my intentions are always the same:)
Thank you to everyone for your insight and sharing of thoughts… you all are truly a gift.
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Calico, i am impressed, i havent even gotten that far, i have thought about who i dont want in the room. They say people pick who they want in the room with them when they die. Me not eure anyone, too painful 4 them to watch, n i dont think i want them staring at me either. Have to think about it, i do have things to do first, like go to the beach sooo....
What u have decided i think will b espected at least i hope so. Hugs
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I also feel the comfort in your postings, Brenda...particularly what Rose quoted. And thank you Tina, an interesting article. Even though less than a hospital, $750 a day still seems costly? This thread is so important. My thanks to all for each meaningful word & thought.
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Love your attitude Blondie - "... i do have things to do first, like go to the beach sooo...." That's what I'm doing as long as physically possible. Rest peacefully, Calico and thank you for sharing these most intimate feelings with us. It is helpful to those of us preparing for the same experience.
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Calico,
I think of you daily and even though I have not been here on the boards doesn't mean that my mind and heart are not with many of you that I've grown to know through the years. I was given three months to live back in 2009. and I'm still here. Everyone thought I was near death in March and then I went on a trial for BC and it has changed my cancer in many ways. The liver and lungs have not had any new tumors and many of my lymph glands (12) that showed cancer are no longer shining like the lights on a Christmas tree! However my spine mets are still really horrible and getting worse, but am told the bone mets won't kill me. My problem is that an old illness in my spine has produced these electric shocks that will hit at any time anywhere and leave me not being able to see and the pain so much I'm frozen and someone has to get me to a place where I can lay down and then large ice packs are put along my spine to stop the swelling. MRI's like I had 25 years ago doesn't show why these things are happening but they are and they leave me quite full of worry. Twenty five years ago the pain in my spine from spinal myelitis left me with months and weeks of life that I cannot remember. I would be at dinner with friends and the pain would come about and then I would wake up in the hospital and it would be weeks or months later. This happened for two and a half years and it all stopped as suddenly as it came on. Now it's back. I had a full time nurse that went everywhere with me for five years because of such. These days one of my daughter is with me at all times. This is their choice. They are in their early 20/s and when I first got cancer I was worried what would happen to them and now seven years later they worry more about me. They work and schedule their lives around me and my chemo and doctors visits etc.. They need to be here with me, ask I understand that my mother asked me to be there for her and I went back East and took care of her for four years til she passed. I would rather die alone but they want to be here and at my side. What is wonderful is that we have talked and talked that they don't feel pity or pain with me dying. Sometimes they say hay, you're getting to angry about us not doing things in your time, remember we having feeling too. I love them for their candor and nothing is off limits for us to discuss.
I have been on morphine (Roxanal the liquid kind) for over five years, it doesn't leave me druggy or unable to function but it does take the edge off the pain so that I can relax or watch a tv show etc., without tension in my body from pain.
Calico, I too live in Northern California and have see the Neptune places and will set up a meeting next week to make sure I have that in place. Everything else DNR, and Prost and a thing that UCSF has which is called Five Wishes have all be done and put into place.
However, I think I still have a year or more of life. The doctors feel that way also. I've been there for over five people as they passed, some for years others have been told that it was time to stop chemo and three day later they have passed. All have had DH and children but they knew that their family could or would not make sure their wishes were followed in the end, and knew that I would. After one friend had me be the person who would take care of things, others followed her way because they saw it was so much easier for their husbands and children. I didn't get anything from it, I only made sure that everyone got what and how they wanted things to go along with burials, etc. My daughters know what I want and I know that they will be able to do so that my wishes are kept. I am lucky.
Calico, if you need someone near that maybe understands I live in Northern California and if I can be of any help Private Message me and I will try and do whatever I can to help you as you need or wisih. Maybe even with bringing you and you DH a nice meal or drive you for a shot if he needs a break. I'm still driving but I realize that the doctors don't think that I drive which I think is funny.
I respect and have had many years of talking to you on many of the sites here. Know that you have touched my life in so many ways and I thank you for such.
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Thank you, M360, and to all my dear sisters here, who understand what others can't begin to comprehend.
The Portland DS2 wrote back that her problem was she didn't trust the process and was afraid that she would just get a call saying I was gone and she wouldn't be able to see me one last time. I don't know that there's a lot I can do about that except take a guess about when I'm going to die and ask her to come??? The other DS1 said she "thinks" she understands what I want. I hope that now that the stage has been set, things will be apparent at the time. Or not , , , ,, ,
Anyway, time to go play games and eat cheesecake with some other friends! Wish you were all here!
xoxoxoxoxoxo
Calico
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Calico...I LOVE that you're playing games & eating cheesecake...what a perfect day!!! Which reminds me of my MIL, who had cancer & her priest came to give her last rights with the family all around at Christmas (1985). When he finished, I said, "Who wants cheesecake?" People thought I was crazy but we all had the best time :-). Well, she ended up having last rights 2 more times over the next 1.5 yrs!!!
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Calico - so good to hear from you - don't know if DSs will ever completely understand but at least you've made your wishes known which is a relief I think. Hope you enjoyed the cheesecake - made me wish for some - not sure my hips can take it.....Love and a hug, S.
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Calico, it sounds like your daughters are at least open to your wishes. I'm sure you've given them food for thought, you've certainly given me something to think about, as I never saw this from your perspective and yet it makes great sense.
Ronnie, that is the best story about your MIL.
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Perfect response, Ronnie Kay!!! No doubt your upbeat attitude gave your MIL a reason to hang around! It was called "Extreme Unction" when I was young, and the Last Rites has a nicer ring to it. Who knows, maybe I'll ask for it at the end.
xoxoxoooxoo
Calico
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Cheesecake
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I can tolerate a little cheesecake but I hope I will be able to eat sea salt caramel gelato or dark chocolate infused with orange and honey or chocolate enrobed strawberries or just plain old fresh figs through all the days possible. After all, even when we find ourselves at the end of life, we are still living, until we are no more.
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The moderators, who graciously said I could join the stage 4 thread after I asked them for special permission and explained why, told me to introduce myself to all of you first as I am different. I do not have stage 4 breast cancer, I have stage 4 pancreatic cancer. It is inoperable and apparently I do not have that long to live. I do hope you will welcome me and not feel I should not be here as my cancer is not the same as all of yours. I have not been able to find a forum like this for pancreatic cancer and can really use some practical advice on end of life issues, death and dying.
This website meant a great deal to me as I went through breast cancer treatment in 2012, and also through recovery since then. I learned a lot from the wonderful women on here, and in turn tried to support and comfort others during the past three years. There is so much I suddenly need to know, everything from planning for dying, to how to discuss it with friends and family - especially with my husband who is devastated, to how I may feel physically as my end approaches.
My husband and I still haven't told our grown kids. We are waiting until after a second opinion three days from now and for the summer to end before broaching the subject. But, how do we find the right words? The second opinion will not change anything, I know that. But it may help me to make some decisions about what I need to do medically.
According to the doctors at Memoral Sloan Kettering two days ago, I have maybe as much 12 months to live if I do nothing. If I take the Fulfirinox chemo regimen the average patient's median life span is 11 months and if I take the regimen the oncologist recommended for me of gemcitimine and abroxane it is 6-8 months. Quite a choice? Take one of the chemos, risk their side effects, and quite possibly die faster or do nothing and maybe live a bit longer, but in any case probably not make it through next summer.
Quality of life matters a lot to me. Being told I have so little time left is almost surreal. I always thought I would live to a great old age as most women in my family do. Instead, I got breast cancer at 63, and at the same time was found to have an indolent form of Lymphoma when the pathology reports came back. Now, just three years later, I have full-blown pancreatic cancer. This all is a lot to digest.
I was also told that I have developed diabetes as my pancreas is not working properly anymore, so I have to take Metforin every day and eat a diabetic diet. I hope I won't have to go on insulin. Just six weeks ago I had my annual check up and my doctor and I thought all was well. It wasn't. I had normal blood counts and normal sugar levels, the only thing wrong was bloating and extra gas which we were trying to manage by trying various over the counter products which were not working. Otherwise I am fit and slim and look well for my age, however I am losing weight.
We have met with our lawyer to update our wills and I have already started tearing through closets and cupboards to toss what isn't needed and give away what is useful. I do not want to leave my husband and kids with a clearing out huge job after I am gone. We have 45 years of stuff packing our basement and file cabinets which is daunting, but at least I have started on some of it. I want to get as much done as possible before I get too sick to do anything.
Funny how our priorities change with our diagnosis. I no longer want to take trips or any long coveted designer purses. I am not religious and am not looking for spiritual comfort. I just want to get my life in order as I try to plan as best I can to make life easier for my husband and children after I am gone. Meanwhile, I am going to do my best to enjoy each day that I am still here. Little things are so lovely, I try to notice and appreciate them. Like the deer grazing in the front pasture early this morning and the rain pattering around our house right now after a long dry summer.
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hortense!!!! I am so so sorry to hear this! I have been praying for you since I heard about your condition on another thread. You are of course welcome here! You have been so supportive to so many women during their time of need. It's our turn now to do the same for you! My heart breaks for you and your family. I have no words right now but I will be here to listen. Much love and hugs coming your way!
Kristin
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Absolutely welcome here. I hate this news and am sending gentle hugs your way. We are here for you
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Hi Hortense - good that you came back "home" to us - this is where you belong as far as I am concerned.
Perhaps take some time for yourself to "smell the roses" instead of trying to clean up the 45 years of living all at once - QOL is everything. We're here for you whenever you need us.
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