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It needs to be okay to die.

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runor
runor Member Posts: 1,613

In the vastness of this forum and everything written I am sure this has been covered, but I don't have the patience to search, so I'm just going to write.

It's about dying. 

It's about how you're walking through the garden of life then you step on a rake and it flies up into your face, just like in the cartoons we watched as kids, only this time it bloodies your nose, smashes your teeth, splits your lip and sends your glasses flying. Cancer is the rake handle that smashes you in the face as you're enjoying the garden. It shocks you, bruises you, makes you wonder who left that damn rake laying there?! But for me, my breast cancer was accompanied by the reality of my own death. It was my mortality, my limited being, my time is up that flew up out of the green grass and bashed me in the face. I have been knocked flat by it.

I'm afraid to die.

I don't want to die.

Everyone tells me I will have a long life and I know this is a kindness, an act of compassion, but I also know that it is as likely to be not true as true.

As I write this, I am embroiled in another cancer scare. An ultrasound following a sudden and tsunami like bleeding event , says blah, blah, bad news, bad news, alarming finding most likely malignancy.

Now I'm mad. With my 2017 breast cancer I was bewildered, shocked, sucker punched, utterly disoriented. But I did not ask 'why me'? I figured, why not me? But this time...I've given you my pound of flesh, Cancer God, I've bled on your filthy alter. I've sacrificed my sense of safety in life, my ignorant bliss that dying happened to other people. You've had your piece of me, so why can't you slink back down the stink hole you slithered out of and stay away from me and from everyone? Insatiable pig of a disease. 

As I wait for biopsies and results, bracing for bad news, I have been destroyed. Obliterated. Anxiety? The word anxiety cannot describe the body bending, smile stealing, breath crushing, hand shaking, gut clenching, state of staggering and crying that I have been experiencing. Grief, grief like a hot blade to the gut, at the thought that this bitch of a disease is going to take me away from everything. Away from my Husband, my child, my mom, my friends, my garden, my love of coffee...... death takes everything. Everything. And the thought of it paralyzes me with a fear as black as the universe. 

I have been in this state for almost 2 weeks and today the non-eating, non-sleeping shaking, staggering just got to me and I had a thought that I have to be ready to die. IT has to be okay to die. I have to organize and prepare to die. 

I don't know how. But I must. Because ONLY in saying that it's okay to die will it ever be okay to live. In some weird way it seems that hanging on to life is keeping me a prisoner of death. Of that fear and overwhelming grief.

Today was a beautiful day. The sun was out, the trees are promising to green.  My old dog is asleep on the lawn. How is it that all this exquisite perfection could be denied me and me flicked off like a switch? Click. Gone forever. On days like today I feel my gut rally some form of bravery and hope. But I know, I KNOW, that in some office with a lab coat across from me, or in this time of covid a phone call, will deliver news that throws me right back to the clawing hordes of hell, to rip at me with their sharp nails of fear, grief and terror. This terror and distress floats off me like a cloud and chokes everyone around me.

I want to be okay to die. I want to die in a way that does not make it hard for everyone else. I want to accept that my life is not likely to be long. That I've been given the memo and yeah, we all could die every day, but most of us don't actively have that in our morning cup of coffee like cancer people do. It's in your face. Like the rake handle. And you can't pretend it isn't. I have to find a way to let this go. To live, come what may. I am not a person of faith, I don't know what I believe, but I did shoot a prayer out into the void and ask, please, Whoever, help me not be so failed about this. I need some acceptance, some philosophy, some ease in my own demise. I NEED IT. It's the only way to free myself from this impending doom, fear and suffering. It has to be okay to die. I must accept that I am going to die and it must be no big deal. How?

This uterine thing might turn out to be nothing. But I kind of think that's wishful thinking and false hope and I think false hope is a nasty bitch, so I avoid it. 

Here, you may say how you are getting ready to die. Here you may say what you fear. Maybe the fear can't even be put in words. Some of you might have  faith. Some not. But if you have arrived at a place of peace and  acceptance with death, if it holds no terror or fear for you, how. What is the thought process you employed? What is the mental battle you do everyday to stay okay with your eventual death so that you may turn most of your energy to living your present life? You do not need to be stage 4 to post. All people die. Stage 4 most likely have a lot of wisdom to contribute. But fear is fear, grief is grief, loss is loss. Weigh in. There is no right or wrong. There is just all of us struggling and then finally ending up at the same place eventually : dead.  I want to arrive there on my own terms, back straight, calm, not screaming in terror, refusal and rage like I am now. 

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  • lw422
    lw422 Member Posts: 1,399
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    Wow, runor. You have nailed every feeling I've had since January 12, 2021. Where the hell did my life go?

    Sorry that I have no idea how to face death. I just don't effing want to. I'm terrified, but have no idea how to cope with my mortality. I'll be following this thread; maybe someone's words will help us.

    Keep your chin up, please. I enjoy your posts so much and I hate that you are going through this. My best to ya.

  • kbl
    kbl Member Posts: 2,733
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    Runor, I’m so glad you decided to start this thread. I want to send this out to my masses and let them know I’m sorry they have x kind of pain or maybe Stage III kidney disease, but they just don’t get that this cancer crap is in our brains 24/7. I have chosen to live because I have a wonderful husband and daughter and a precious grandson and want to enjoy them. With my cancer, I’ve not had too much pain up to now. It’s been awful the last few weeks. Is it just normal crap or is the cancer going to take me this year?

    I read somewhere that fighting death makes it that much harder and more painful. I don’t want to die either. I know none of us do. I have put it in my head that when it comes time and I know it’s happening, I’m going to let go. No matter how much I want to stay, I have no choice. I honestly feel worse for my husband and daughter. They’re going to suffer while I will be gone and in no more pain.

    Your post is beautifully written and I truly appreciate it so much. I’m sorry for what you’re going through. You are in my thoughts. The not knowing is just torture.

  • saltmarsh
    saltmarsh Member Posts: 192
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    In part because of violence around me growing up, and in part because of my mom's death six years ago (from the same type of cancer I have), I have given a decent amount of thought to what makes a person -- particularly what might make me -- ready for death. I'm not going to lie and say I have no fear of dying, or that I'm totally ready to go; I'm not. I'm agnostic, so I don't have firm beliefs about what happens when we die. But here is what I have done so far to prepare myself:

    1. I took a course on death and dying. I know, I'm a huge nerd. But so many people in US culture don't talk about it and I thought I could benefit from examining it. I found it helpful. Taught by both a professor of education and a women who was dying of cancer, it was a lovely chance to read up on different cultures' ways of handling death and reflect on what resonated with me. I reflected on what I would like my legacies to be, what I wanted done with my body, what I did not want my family to feel obligated to do, etc.

    2. I offered apologies years ago to anyone I was worried I might have hurt or offended, and done my best to avoid harming people and taking responsibility if I find I have, since then.

    3. I've made sure that I live my life in such a way that the people I love know it.

    4. I've identified one thing I would really love to see before I die, should I be lucky enough to have warning and for it to be possible, but it's a big ask and I don't want to make it unless I know my time is limited.

    5. I've made what plans I can to provide for my son.

    6. I'm not "saving" any experiences for later in life. I don't have a bucket list, but if I did, I'd be crossing things off as fast as possible. I have watched too many people say, "I'll take that trip when I'm retired" or "We'll do that for our 20th honeymoon" -- only to find that life gets in the way. This is, perhaps, easier for me than it is for others because I'm not a thrill-seeker and have never had amazingly strong wanderlust. But the point is, if I had something I really wanted to do, and I could do it, I would. Now, or ASAP.

    Really, truly, the part that scares me the most is leaving my son and husband, and my dad when it comes to that. I worry for them. I have done and will continue to do what I can to set them up for success in case I leave, but the emotional part there is the worst for me.

    @runor: I'm very grateful you shared your feelings, I'm so sorry it's so hard, and I'm wishing you all the best.





  • moth
    moth Member Posts: 3,293
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    at this moment, I'm going with laughing in the face of it and denial right up to the end. I figure until it becomes completely unignorable and not just "well, it will happen at some point, probably much sooner rather than later" I don't really want to spend more time thinking about it than necessary.

    I'm adopting an ER healthcare worker mentality: are you actively dying, like right this moment? No arterial bleeding, no heart probs, no resp failure, no sepsis? No? Ok then. Neuro intact - sort of? THIS IS A WIN, people! Let someone else worry about the slowly grinding disaster thing that's trying to kill me.

    I'm really working hard to give it as little space in my mind as possible. I currently also reject all the planning for a good death, and figuring out how to be a better person beforehand etc etc etc. Absolutely reject it. No time for that & I do not need another thing on my to do list & another thing to feel like I'm not doing 'right'.

  • bcincolorado
    bcincolorado Member Posts: 4,700
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    Hug runor. Well said.

    Breast cancer has not killed me yet but now I have another terminal illness that will and no cure they can only help symptoms as it progresses.

    I got super depressed at first about it all after the many years and years of tests and surgeries for cancer to get this now. My grandma said if it is not one thing it is 6!!

    I have decided to try to keep going as all and I can and fight as long as I can since I have young grandkids. Would at least like to see them graduate high school if there is any way possible I can live that long.

  • jhl
    jhl Member Posts: 174
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    Oh Runor,

    You have articulated so well some of my thoughts. Is it really my responsibility to help my family experience my death as a good one? My Mother passed away last summer at the age of 101 & her death was not a 'good' one.It was ugly, sad & emotionally painful for me. My consolation is that it was her time - past time. I don't know what I want but I know the fear, grief, sadness, terror & downright anger that we are here even thinking about it.

    Runor, take some time, all the time you need. None of us has an answer and truly the answer is what you find. Please vent, get angry, become reflective seek out counseling and support. Speak with your husband, have an ugly cry and find some joy any way you can.

    You are in my thoughts,

    Jane

  • alicebastable
    alicebastable Member Posts: 1,944
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    Moth, I love your refusal to be maudlin!

    Rumor, has your status changed to stage 4? I'm sorry to hear that. I think there's a Death and Dying thread in the Stage 4 section.

  • illimae
    illimae Member Posts: 5,607
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    Damn girl, that’s a powerful post.

    In my case, I am stage IV, diagnosed at 41. It’s been a cruel reality check that I won’t grow old, retire and travel with my husband as I expected. But, I’m optimistic with a healthy does of reality, so I will not fight the rip current, instead I will ride it until it ends. I am not religious either, so I hope at my time of death, that my brain replays memories of playing with my bulldog puppies until the switch flips off for good. Acceptance came quickly for me, which I am grateful for but everything said in the original post is raw, real and just unfair.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Great thread topic.

    I agree, it has to be okay to die.

    My step daughter's bio mom died of BC. I helped her quite a bit (years before my own BC) over the latter years of her illness. She was in complete denial about dying-- when the rest of us weren't-- and while it worked for her psychologically, it put wedges between her and others, especially her kid, and it caused her to over-treat herself and undergo more gnarly procedures when she could have let most of that go, had palliative care and focused on relationships and enjoyment.

    To me that's why it has to be ok: because I'd rather die with courage in reality, so my loved ones can be with me in reality, and I can actually feel alive, & not in denial with fingers in my ears going "lalalalalala" I think it's fine to ignore until urgent, like Moth said, but once it feels urgent, this demands we face it.

    My Dad died one year ago yesterday. He was aware he was dying and at ease with dying. (Granted, this is easier at 92.) But that was such a gift to us, that he was not one bit in denial and at ease/ accepting.


  • sf-cakes
    sf-cakes Member Posts: 542
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    Thank you runor for this topic, I've read some of your other posts and have been thinking of you. Everything you're going through sucks, I hate it for you.

    I was diagnosed with stage 2B breast cancer in June of last year and everyone told me I would be just fine after I went through surgery, chemo, and radiation. I believed I would be okay, gave myself props for getting through intense treatment...and then in January more cancer was found. That's when I completely lost it. Sobbing, screaming, believing I had to quit my job, more sobbing, wondering just what exactly I'd done wrong in my life (since the genetics testing revealed nothing hereditary), deciding which funeral home I wanted to use, updating my will, stopping the deduction out of my paycheck to my 401k (since I'm not going to live long enough to need a robust retirement plan), going through old photographs and letters to burn... I felt like I had lost my mind and my heart was breaking.

    I eventually realized that I was so upset because I love life and don't want to leave it, obviously. So what do I actually love about this life? I don't want to leave my husband, my house, my work, my family, friends, my books, music, artwork, garden, theater, tea, scones, pizza, etc. Those are the things I'm grateful for, so what I do every morning, several times per day, and before bed - is I remind myself what I have that I'm truly grateful for. Any little thing that happened in the day that I'm grateful for, I recognize it. It helps ground me to what is important. I try to laugh at things but I also let myself cry. I read A Year Of Miracles by Marianne Williamson daily, which is often calming (but not always).

    I always imagined I would die as an old woman in a cabin in the woods with my old dog next to me, and that is so not going to happen now. So I try to imagine how else it might look when I die - I'm 51 now and planned on working until 65, but now I'm planning on working until I'm 55, or until I'm unable to, whichever comes first. I love my work, so letting it go before I have to would pain me. I am furious about covid taking away my ability to do some of the things I love, and spend time with some of the people I love. I try not to let that anger consume me. I pray for my heart to be filled with love, kindness, compassion, and gratitude, and I am seriously imperfect in that goal. I listen to really loud 80s music and BTS and Yo-Yo Ma in my car. I wear black boots and t-shirts and blazers, and since my hair came back mostly silver after chemo, I've stopped coloring it when some youngsters told me it looked cool. I'm not cool but I no longer care. I don't care about my weight anymore. I know I'm going to die much sooner than I ever thought I would, and I'm still grateful for this life. It is a daily, frequent reminder to return to gratitude, and it helps reduce my fear.

  • cure-ious
    cure-ious Member Posts: 2,745
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    Runor, Spot on, you perfectly encapsulated the torment, how will you hear, how will you react? Trying to convince yourself that you are "old enough", "lived enough", "had a great life", and then imagine telling your kids and loved ones to go on without you? it is impossible...

  • ctmbsikia
    ctmbsikia Member Posts: 756
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    Well, my name and birthday is already on the gravestone. What will be my death day? I have no clue! I can tell you that over this past year I have thought a lot about death. For awhile I thought I'm ready to go I can't do this anymore. I was angry that I woke up in the morning. I was mad at myself for drinking too much wine and having a headache day after day after day. Alone. Yuck. It is hard. Grief as they say is a process. It can also make you sick. Physically unable to function. I've only recently found some function. Slowly, I'm inching towards having those small moments of joy in my life. Counting my blessings, which I am a little religious, and I have many many things to be thankful for. So I am OK and it is OK to be ready to die while still living your life everyday. That's all the wisdom I can muster right now.

    Wishing all of you well.

  • flashlight
    flashlight Member Posts: 311
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    Can anyone really plan their death unless they are taking their life? I worked as a terminal cancer nurse many, many years ago and held the hands of those who decided no more treatment. Most were ready to move on and there was a peace that surrounded them. When my mind thinks of death I remember them. Or I think of those I have loved who have passed on. Like Moth, it is a passing thought I don't want to dwell on it. Should we be prepared as far as wills and paperwork? Absolutely! That is how I feel we can help our love ones. None of us really know when our time will come. It may be in a car accident tomorrow. Like SF, I am grateful for this life.

  • Gamb
    Gamb Member Posts: 570
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    Cancer, a parasite that kills it host, not quickly usually a long and agonizing death. I watched my husband go thru a cancer dx and hopefully treatments and deeply horrible realization that nothing was working and death was coming. He never wavered, until days before his death, he said I pray there is no reincarnation, because he wouldn't do this again.

    Then when I was dx a year after his death with breast cancer. Sheer terror went thru me, because I had seen what cancer did to him. A nurse said remember this is not your husband's cancer, words lost, because even tho it wasn't his cancer, it was cancer, the stealer of hope, the robber of tomorrrows,, the death of today. I still hadn't found hope from what my husband went thru. Hope was gone. I just knew cancer was thru out my body, but it wasn't.

    Chemo was another terrifying event, but it worse in my mind the what I really went thru. I had stilled myself in knowing I was a dead woman walking. So with this thought in my head, I started preparing. I have gotten my papers in order. I have purged my home of stuff unwanted not an easy tasked of a life lived, I'm still purging. Cleaning out out buildings and garage why, so my son's don't have to any of this when I'm gone.

    I'm don't have MBC, but the fear is still real. Fear of dying, maybe not. But fear of what leading up to death entails, you bet, scared shitless. I don't want my son's to witness my death, but o fear I can't do it with out them.

  • runor
    runor Member Posts: 1,613
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    I am humbled beyond words by everything I have read. For what you have all so bravely shared. Your realities, in their most raw and honest. The dark night of the soul is a place populated by vast swaths of us, you'd think it wouldn't feel so isolatingly alone. Yet it is. 

    I have my 'papers' in order (not so much my sewing room!), I have given away items that I would want to give after my death and thought, why the hell wait until I'm dead for people to have these things? I did a purge and give-away after breast cancer diagnosis. This time around I have less cleaning up to do.

    I read an article, I think it was a podcast somewhere here on BCO, about palliative care and hospice. The speaker said that when you have made the decision that it's okay to die there will be people in your life, well meaning, out of love, who will tell you you have to fight! You can't quit! You must struggle against this disease and win! And this is VERY counterproductive to a good death! Speaker said that you might have to distance yourself from people who can't accept your decisions. It is very hard, brutal as hell, to arrive at that 'I'm at peace with this' moment and people who tear that down with rah-rah, fight-fight, need to be placed a little further away. It made perfect sense when I was talking to a dear friend, telling her I have to be okay to die. She immediately did the, you are not going to die, you are going to live to be an old lady, I will not tolerate you dying! I know this is love. I know she means well. But it made me feel torn right back into the madness, the terror that I want to escape from, the terror I have to take the teeth out of by saying death, I'm ready for you. 

    Forward we go, for there is no other way.

  • alicebastable
    alicebastable Member Posts: 1,944
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    I've had four different cancers, plus another nasty diagnosis that will take me fast someday - I hope in the very far distant future! The only time I hopped on the Death Train was when a PET scan lit up and I had to wait about three weeks for a biopsy and another week for results. I had visions of funeral plans dancing in my head, guest list and music and all. I had gotten myself so worked up with the death drama that I felt a little cheated when the results were benign. Then I thought, Good (premature) grief! What a wasted month! I hadn't been too freaked out with the initial cancer diagnoses, so I don't know why I let myself get sucked into that mindset over a biopsy. So now I get my yearly mammograms and my six month CTs and occasional ultrasounds when mystery lumps appear, and just feel mild curiosity about the procedures, then get in the car and go home and LIVE. We're all going to be dead a very long time, so why let our minds show up early for the final ride?

  • Gamb
    Gamb Member Posts: 570
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    I think no matter where we stand on this issue euthanasia, I believe most have thought about it. I know I have, I know my husband did, to die with dignity, to die knowing you are ready and are still able to address the ones you love. I think knowing I am on the death list, really knowing, not just some abstract in thought has made me realize we need this option.

  • cake8icing
    cake8icing Member Posts: 23
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    Runor, you have put into words what so many people feel but don’t know how to express. Death, as well as birth, are two life processes that we simply cannot know about firsthand about until we go through them, alone. In the US, we teach children at a young age about childbirth, but any talk of death is considered maudlin. My mother grew up in Ireland, where the dead were waked right in the home; small children learned about death from a young age. I think that old way has merit; you learn that life is fleeting and precious and death will come when it will. My father(60), mother (92), brother (67) sister-in-law(49) and niece (39) all died of cancer. For me, I feel it is not a case of if, but when, cancer will take me, there is so much of it in my family. I was close to my sister-in-law when she died, both in relationship and in age. A friend had given my brother, her husband, a book to help him cope with her death. The book is called “Final Gifts”. While it is meant to help the living understand what the dying are going through, when I read it, I found that it gave me peace thinking about my own death. Patient after patient in the book went through mystical experiences during the days leading up to and at the time of their death. I am not a religious person, and neither were many of the people in the book. But the common thread was that there was more peace at the end than one would realize.
    Maybe all we can do is take control of the one thing we can in the face of death: choose how we will react to the very thought of it. Because if we decide to die in spirit before death actually takes us, then we’ve just shortened our lives by however many more days we worry about that which we cannot change.
    Hugs to you and thank you for posting your feelings with all of us.
  • ctmbsikia
    ctmbsikia Member Posts: 756
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    Gamb- I am very sorry for your loss. The day I walked into my husband's hospital room knowing he had given up, the NP said, we're going to give him a great day! I thought what? Being there watching that as hard as it was - is better than doing nothing and letting the beast disease of cancer eat you alive.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68
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    Runor,

    Reading this was like reading my own experience. All through life, I didn't really fear death. Of course I get scared and panic about my health, but I was never really scared.

    After my diagnosis, that feeling just became stronger for some reason. I'm not scared anymore. It's like I'm a different person. I researched A LOT to try to explain this phenomenon. In all my research, I always ended up with Taoism. It's not a religion. I'm not sure it's a philosophy. It's just living your life and appreciating the present. it really helps me.

    Lao Tzu quote

    "Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
    Lao Tzu

  • flashlight
    flashlight Member Posts: 311
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    Gamb, I am sorry for your loss. I know it brought your husband comfort to know you were there. My daughter's MIL recently passed from ovarian cancer. She had refused treatment and had wonderful care through hospice. Medications to let her pass pain free were given routinely. My SIL was made aware of what was happening as her body shut down. She was diagnosed in April and gone in October. Euthanasia is a deep subject. I'm not sure I could do it. Phoenixrose8, I love that quote.

  • runor
    runor Member Posts: 1,613
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    There have been so many topics brought up, variations on a theme. Like euthanasia or as it is called here in Canada, MAiD,  Medical Assitance in Dying. 

    For me, I'm glad to know it's an option. But if you're not okay with dying, then even thinking about an exit strategy is off the table. My issue is not so much arranging how to die, but being okay with death no matter how it comes. Not that a horrible death is A-okay. Cause it's not. But if I can't face my own end, I sure as heck will not have the ability to think clearly about hospice or pain meds or assisted death. I want to be ready to deal with these as the need might arise. In a state of acceptance. Not spastic, frantic, terrified panic (like I am right now).

    I think most of us agree that accepting death is NOT 'giving up'. Good grief. If all it took to not die was to not give up we'd have a lot of really, really old people walking around. Dying is built into the plan and our will, our fortitude, may get us through many life hurdles but there will come that time when nothing we do is going to win that fight, try as we might. 

    Someone (sorry, can't recall who) asked if it was their responsibility to die in such a way that it was easy on everyone else. This is a very fair question! I like it!  There is something to be debated and hashed out in this topic. I would say first, no, dying is a personal, private, intimate experience. I often think that when I die I do NOT want a pilgrimage of the distantly interested to come stand by my bed, gawk, wring their hands and then shuffle off having done their duty at the side of the dying. Yuck. No thanks. Even now when I am in this frantic state and friends say they will come sit with me (an act of giving and love) I decline. I am better alone. Stronger alone. When I need to face something tough and no one is around to bail me out, I man up. So I do not want anyone sitting here that I have to make conversation with, cause I don't have the energy for it. Nor the attention. Hub, my 'safe' person can be here, but that's it. I want and need this space as sacred and as quiet and calm as I need it to be. Others disrupt that. This is an introvert thing. Extroverts (those crazy people!) might want a full swing rock- a- billy dance going on around them as they die. I don't get it. But in the task of dying, I think we need to put our needs first and foremost and do what must be done, if we know what that is.

    However.... watching my dad die was so profoundly ugly, shocking, horrifying, obscene and draining that we were all left seriously messed up for a long time. As a rancher raising cattle, you fix and heal the cows that you can heal, and those  that have no hope , you put a bullet in them and do not let them stagger around in wasting pain and misery. You are a shit dirt farmer if that's what you allow to happen in your herd. If my dad had been a cow, we'd have shot him. Instead of allowing him that mercy, we were forced to stand by the bedside and witness an obscenity. That was 30 years ago and I am still mad about it. My dad did not want to die, was not happy to die, was not at peace with it, was angry, felt cheated (he was) and knowing this made it all that much worse for everyone involved. So yes, dying is about the dying. But it leaves a smell and taint in the air that can be positive (or as close to positive as possible) or dreadfully destructive. The spirit that you carry into the ordeal of death matters. I really think it does. He was hanging on and it made us hang on with him, it was like all of us being dragged off a cliff, our fingernails left in the rocks as we clawed to stay alive as he clawed to stay alive. Everyone was damaged. I don't want to do that to my people. Yes, if I have a need of some sort when I'm dying, then I think I"m entitled to have it even if it makes no sense to someone else and annoys them. But, I also care about the mental state of my family and close friends and in that I do feel that while their feelings are not my responsibility, they are most definitely my concern. If that makes sense. 

    I keep thinking if I get the all clear on this uterine thing, if the ultrasound that says 'suspected malignancy' turns out to be wrong, I will feel like a jackass for freaking out. But then...no. Twice I have been hit in the face with a rake. Twice that fear has taken me by throat like a lion on a gazelle and slammed my face into the dirt. The ONLY way I can beat that stalking lion is by refusing to ever run from him again. I will, in the end, lose. But the panic and horror, these have to go away. This is no way to live. And while I am living, I want to LIVE!

  • kbl
    kbl Member Posts: 2,733
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    Gamb and cake, I’m sorry for your losses. Cake, I did something I haven’t done in many years. I ordered that book in paperback. I read the first story online to see if I wanted to buy it. Wow, it brought back memories of when my mother passed. The night before she died, she was very stand-offish. I actually got upset at her for turning her head away when I was talking to her and acting different. I had no idea she was readying to leave. I wish I had known. I am definitely going to read it and leave it for my family when it’s my time to go.

  • marinochka
    marinochka Member Posts: 82
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    Bravo, moth!

    I love what you wrote

  • marinochka
    marinochka Member Posts: 82
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    I wish you runor that this uterine thing will be nothing serious. I do believe in God and I will pray for you and think about you.

    And I am not saying it for you, I am so touched by your words here, I would not be able not to think about you !

    love and hope...even if this thread about being ready to die...but I want to say : live!

    P.S. I remember when I was diagnosed and after that was sent for 2 more biopsies, anxiety was so brutal, that at some point, I did not care about result of those biopsies, I just wanted to get rid of this fear ...it was like fire inside of my body. And I thought that this is also a hint for me: nothing is worse than this fire who eats me alive right now. And when i focused on getting rid of this fear, anxiety, panic, somehow i was thinking less of what brought it on me.

  • mountainmia
    mountainmia Member Posts: 857
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    I am not afraid of dying, but I am afraid of leaving my husband alone. Who will cut his hair? Who will take care of the finances? How will he get through the mornings without making coffee for me? Well, of course, there is more to it than that. Of course it's much more complicated than that.

    My husband is 14 years older than I am, so for the first 37 years of our marriage, I assumed he would be the first to die. It was something I thought about in the still of the morning, when I was awake and he was silent, not audibly breathing or stirring. I would think, today is the day. I'll call the ambulance. I'll call the kids... I wrote long plays in my head, and then he would turn, inhale deeply, and I would know today is not the day, after all.

    We traveled to Peru late in 2018. It was a trip I'd wanted to take since grade school. Peru is a less developed country, a land of earthquakes and other dangers. I looked around me and felt so peaceful with the risks. Bad things could happen to me, but the rest of the world would go on. My kids are grown and capable, and they know I love them. While they would be sad, they would go on. It would be okay.

    In early 2019 I was diagnosed with cancer. I was shocked because I was really, really healthy. At first it sounded like a pretty simple thing, though it was scary to be sure. A smallish tumor, no nodes involved, good margins. But triple negative. If you look at the stats, you can read them as pretty positive, or not. I'm pretty comfortable with stats and don't read them as either positive or negative. I just know I've still got some time before I feel safe again. It's like Peru. Bad things could happen to me, but the kids are alright.

    I think about cancer a lot. I have health anxiety now. I won't be a bit surprised if I have a new diagnosis, unlike how shocked I was when first diagnosed. I won't be a bit surprised if I have a mets diagnosis. In a way, I am waiting for that. But while I wait, I'm still busy living. I'm writing a book on quilting for a small publisher. Today I was invited to have several quilts in a museum show this summer. I'm eager to see my kids and grandkids. I still enjoy my morning coffee, made by my husband. I volunteer every week, teaching English to foreign-born adults. Yesterday and today I volunteered at a vaccination clinic.

    I'm still here. While I am able, I'll keep busy. But someday I'll die, and that's okay. It happens to everyone sooner or later.


  • Phoenixrose8
    Phoenixrose8 Member Posts: 68
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    Thank you MountainMia. Your post was beyond inspirational. I have anxiety as well and at first it subsided, but then PTSD from the chemo roared into my life. My family helped me realize today that my extra anxiety this week again, is the anxiety itself. I have a follow up Mammo, MRI, psychiatrist appt.,and MO appt. all next week. I'm scared that they will find something like my last follow up, a benign mass in the other breast which I needed surgery for. I'm scared that they will find something again. I try to just focus on the present but I'm having such a hard time.

  • elderberry
    elderberry Member Posts: 1,064
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    runor: you write so eloquently. It nearly took my breath away. It was raw and honest. You expressed so clearly what many of us feel but don't have the words to express it. I am with you. I am also an introvert. I like to meet up with people and then I can hardly wait to get home and go into a room by myself. I don't want to be "surrounded by friends and family" I am not sure if I even want my DH there. I don't want him to fall apart in front of me while I cross over. I want him to remember me as I was in life. I am not afraid of being dead. I don't believe in an after life but I don't want to die in terrible pain. Just fall asleep and be no more. I sort of believe that the whole world is made up of energy (atoms, neutrons...I am not a physicist!) and that my energy goes somewhere. Just somewhere. Not a ghost or an angel. We are the stuff of which stars are made. Was that Shakespeare? :-)

    You often hear, usually from people not suffering from a life threatening disease, "Well we are all gonna die sometime" Yes. True. But not now!! I used to joke about being in my 80's dancing on a tabletop with an impossibly beautiful young man in some place like Spain then clutching my chest and toppling of the table. Dead before I hit the floor. Those poking holes in a ludicrous joke would say "Why would a beautiful young man dance with an old prune?" would get the answer "Because I was terribly rich." That is something I will never be. And young men are only for looking at and remembering fondly my own youth. Young men for me now are 40. A 20-something is a baby.

    mountainMia: have you gone to the "Calling All Artists" and posted pics of your quilts? I would love to see them. When I was first diagnosed I had to take anti-anxiety pills to get me through the day and then one in the evening to help me sleep. I have better coping mechanisms, have accepted stuff. I still on occasion find that anxiety gets the better of me then I take a pill but last my 30-day RX lasted 5 months. I wish I had words of wisdom for you. Anxiety eats me from the inside out. It is a parasite that kills my appetite, makes unable to be still, keeps me awake at night. If it could manifest itself, what would it look like? A formless, dark mass?

    AliceB: you made me laugh about "feeling cheated" I did the same thing early on. I had a good cry over the drama. Okay -- I didn't die in the following month. It was good planning and it is in a folder, open to change if I want to alter my play list. One job checked off, eh?

    .

  • mountainmia
    mountainmia Member Posts: 857
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    Thank you, elderberry. I did post one photo of a quilt. However, I removed it because I cross-post photos elsewhere and I want to protect my identity.

    I like the idea of dying either in a thoroughly non-dramatic way, like in my sleep, or in an exceedingly sudden and dramatic way, like falling off the table while dancing with a young man!

    As to my anxiety, it's just a continuing low-level annoyance, much like my tinnitus. A lot of the time it fades into the background, or at least my annoyance does. It isn't a level I'd medicate at this point, but it's good to know that's always an option depending on circumstances.



  • runor
    runor Member Posts: 1,613
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    Mountain Mia, have you watched the Netflix series Grace and Frankie, starring Jane Fonda and Lily Tomlin? ( LOVE THEM TO PIECES!) There is an episode where a friend of theirs has her cancer return and she decides, while still relatively functional, to throw a big bash, invite everyone she knows and loves, have a great time of eating and sharing and hugging and then she goes upstairs to her room and with planned assistance, takes that final bow. She was so at ease with her decision, so composed. I was struck by that scene and it was well over a year ago that I watched it, long before all this uterine terror flew up in my face. That is what I want. I want it to be okay to die. 

    When speaking to my daughter about this anxiety, which right now is on high level and stealing precious time from me, she suggested that I try mushrooms, psilosybin. I said, good god in heaven, could I not have gone to my grave not knowing what a hopeless druggie you are?!  She said,  "calm yourself down there old mom, we're not out getting ripped out of our minds every weekend and driving our trucks the wrong way down one-way streets. You do this in a secure setting with people you trust, when no one will be driving anywhere  and you CAREFULLY gauge the dose that you will be taking and then....you see the world in ways that you never, ever saw it before. "   Some things I never thought I'd be discussing with my kid. But if this feeling flares up again when I hear bad news, I am DONE suffering. There is no virtue in it. If it's okay to die then it's okay to do what I have to to live well in the time that I have left. Whatever it takes.