A place to talk death and dying issues
Comments
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Brenda - I will be back soon to read all you shared. And everyone.
The chaplain and social worker will be here tomorrow. And the palliative nurse from hospice. I feel too good to need to see them Or not.
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i read her article and could agree with many points. Once one experiences the inevitable estate 4 terminal side of life and faces there is no turning it around there is a new face to life.
My DSIL had a DX of BC almost the same time I did. Her DX was stage 2. She chose MX, rads, chemo and AIs. She is still free and clear. She says God healed her. So there I stand in comparison. My DX was stage 4 upfront. I chose lumpectomy which required most of my breast being removed from the inside. And my nipple scraped. Axillary nodes removed. No chemo or rads. Three years later I felt the need foran oncologist and started Faslodex and Air. My path went on to present. But I am still here, still stage 4. Still not healed by God.
I don't compare myself but you can imagine DSIL and I do not spend much time together. I don't like the preaching and praying she is doing for me. I don't expect to be special or healed or blessed over another.
At a videotaped deposition I did last week I refused to use the word blessed. My attorney finally understood my moral reason. That I am not blessed over another in need.
These are my opinions.
I suppose this is one reason I am having a private service in the end. To refrain the judgements of how I must not have wanted to live enough, did not believe enough, did not pray enough, created some karma that got me in the end. I followed my instinct, did my best expected nothing, am fine with the end result as far as my higher power goes. Medical professionals messing up, that I do have issue with and hope I can let go of that.
Kaption. I said that just yesterday. My entire life is this. Some say they will not let BC define them. But after all these years I can say there is nothing but the weaving of everything in my life coming back to this. I open my eyes and there may was well be a sign on my bedroom wall. Seems every time I want to remember what was happening when it coincides with an appt, test, treatment.
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Good luck. Bad luck. Period.
Not god. Not treatment. Not raw kale. Not meditation. Not giving to charity. Not karma. Not caramel. Not early or late menopause. Not kids before 30 or kids you stole from a Walmart parking lot. Nothing you did. Nothing you didn't do. Nothing you can do. In fact, it's not about you!
It's about good luck or bad luck. It's about the randomness of this fucking universe.
Most human brains cannot, CANNOT cope with the utter arbitrariness and capricious bitchiness of the chaotic universe. So we invent religion, or right eating , or tantric yoga or you name it. We must invent and assign reasons because while we were given the seemingly most versatile brains, we were not given the scope to grasp the enormity and utter lunacy of this life.
We are born for a reason and we die for a reason. Says who?
Bluebird, you are right. There will be those who sniff and judge. Your funeral will be attending by some who know this cancer was just pure, rotten, bullshit bad luck. And that your SIL was just pure, reasonless good luck. Yet there will be others who whisper that the reason you didn't make it was because you did something to deserve it.
Oh ... how I wish I had something to tell you that would change what you know to be true. Instead, I would encourage you to plan a funeral that no one will ever forget. Of course, clear this all with your family. But at your service, have several complete strangers you have planted in the crowd who will get up and speak about you.
1) much younger and shockingly attractive, will be your tearful lover. Your Hub will be appropriately offended!
2) one who stands and announces that you were the birth mother they had been searching for. Your child will be appropriately offended!
3) one who stands and says you were wanted by the FBI on several charges of international espionage and this whole funeral might be an elaborate cover up
4) someone who stands and says they are from the witness protection program and yup, this is a cover up!
If people want to talk, oh dear god, give them something to talk about!
I do not mean to make light of any of this but in my darkest hours making light is where I find the light. If we can't be good - be bad!
All in love.
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HIGH FIVE Runor!! Thank you for this mornings giggle.
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runor, you go girl!! How I wish that the women beating themselves up over what they did or did not do would understand about luck.
I guess it's all in the fact that these days we need to blame someone or something for everything, There are no accidents.
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Thanks Runor!!!
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runor~ there you go again. You are truly clever, and a fantastic writer. I just adore you! You are clearly a special person. You make me smile daily. No matter what. Thank you for being you! I’m sorry to invade. Just wanted you to know your humorous view of things helps so many I am sure. Please don’t stop being wonderful you.
Hugs for you Bluebird,strong woman.
Much love ~M~
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Thanks runor. I had the “God” comment from my husband’s nephew. Just stared at him. I’m sure my dh didn’t even hear it the way I did. You are exactly right, people have to feel they have some control of what happens to them. We are examples that we do not.
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RUNOR - LOL truly out LOUD!
Already I had planned it as something they would not forget. But those are some good points I had not - as the 'good' girl - thought of doing. The FBI, good one. The younger lover, Hubby would possibly just delete that f*^>"r from the planet. Tie him by the ankles w/ a chain and set him afire and pull him around the meadow to show my DS how he wants his ceremony to be. The witness protection program, feasible. The person who tells all of them I am not really even related to them would be the best! I think an alien should speak up too. What would the message be? I really really like this idea.
Last night I was mulling over the DSIL at my "funeral" or so be it my celebration of life ceremony as I see it. I realized I don't have to invite her. It is after all a private gathering and by invitation only. I had this dream I said to Hubby you have to control your sister. But then realized she did not need to be there at all. It would just freak her out anyway. And today when I told him my concerns he said, she doesn't even need to know it is happening. We won't tell her until after the fact. Of course, the obit might give it away but the private part is in the last paragraph.
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(oops, wrong thread earlier)
runor and bluebird, I was wondering if I could suggest a slight tweak to runor's number one idea for the service/celebration whatever. It is actually an addition. How about having more than one lover show up to speak, from a variety of several and sundry sexual orientations? When I was divorcing my first husband, straight and gay friends both volunteered to claim extramarital affairs with me. (How that was supposed to help me, I have no idea but I was touched by their generosity.) Wouldn't that add some interesting drama to the festivities?
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Ooooh! Yes, Jaycee! And a fist fight, or at least two drag queens whacking each other with purses. Oh the fun we could have!
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OMG!!! I love this! I am looking at my funeral in a whole different light! I never liked the somber, sad crying stuff anyway. I want to tell fun, funny stories about people! Lets talk about the great moments we had!
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I’m planning no sad services but for my hubby to host some good food, great wine and a party. My kids and my 3bffs all know also.
I am cleaning out our house, even had an organizer last week because I need help physically. We did 5 hours and she is coming back next week. I was happily able to pawn off lots of Christmas decorations and crafts to her! She said I was the easiest decision maker she has worked with. Maybe because I’ve done parents,grandparents and even a friends parents home.
Too much stuff, lots of it worth money but not wanted by my adult children. Different tastes. I don’t have the energy to do the sale of things so donating right and left.
My medical wishes are all taken care of....now hubby is a different story.
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I'm planning on having an ice cream truck at my service. I went to a celeb of life last year, and the woman's DH found one that would park out in the church's parking lot. I thought, "How cool!" The ice cream was good quality, too.
On that note, I think those of us who have some "spirituality," don't see "death" as a bad thing, necessarily. Yes, our bodies break down and stop functioning, but we are "transitioning" on to another spiritual realm of existence. Our "essence" never perishes. f!
If I were not a spiritual person and believed that there was simply NOTHING after I "died," [POOF! I'm gone, and it's like I never existed....] it would be a totally different story.
My daughter is going to have them play my favorite jazz selections as people are being seated in the beginning (Antonio Carlos Jobim, Vince Guaraldi, etc), and I've selected Luciano Pavarotti's rendition of "Nessun Dorma" to accompany my slide show images.
No sad funeral for me, either
).L
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Even without spirituality, it would not be like I never existed. My son is here doing his good work and being a good person. My students remember the things I taught them. My friends and family remember my existence fondly (mostly). I'd like to think of that as my legacy. Never existed? I hope not.
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I've been off line for a few months (SEs have been brutal lately) but I want to thank the Mods for addressing my question in the new blog series. As it turned out, the topic of dying at home vs. off-site care facility came up while discussing plans for my husband's father's death from liver cancer two weeks ago when the family needed to decide if someone was going to take him home to die or if they would put him in a hospice facility (the hospital didn't want him any longer because he was about to die any day) It gave my husband an opportunity to talk about his feelings on the topic without it being directly about me. And so I learned that he thought dying at home wasn't a good idea because no one in the family would ever want to step foot in that room again. On a more practical level, I also learned that he was concerned about how it would affect resale value of the house. Of course he still tells me that he'll do whatever I want and whatever makes me happiest (and I know that he will), but at least I know his true feelings on the topic now and can take them into consideration. Hopefully we still have a little while before we have to figure it out.
But not all conversations are that hard. He asked where I wanted my ashes spread and that kicked off a beautiful conversation reminiscing about all of the great adventures we had taken over the years and how could we possibly choose one favorite location (for the last ten years my career involved spending time in remote wilderness locations and my husband was my frequent companion). I suggested that he could hold on to my ashes and have both of ours spread together at the same time when he dies. He loved that idea. The next day he told me that he had already talked to his best friend to ask if he'd be willing to do that for us, and that of course it meant passing on my Jeep to JJ so he could reach the location haha!
Since all family is on the East Coast and it's just the two of us here in the West, if I have my way my celebration of life will be around a campfire for the friends who share my passion and appreciation of nature and the outdoors. Then my family can do something more traditional back East if they want.
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Janet - you two are apt to gt me in all kinds of trouble! lol What will my real and secret lover think?
That said, I believe the love of my life was a skunk. Truly. His name was Pooh but originally I named him Sequoia for the mighty tree.
he was littler when we found him orphaned, he came to me after praying at me first. my dress healed but my heart was never ever the same. And yes, he had a permit and was desaced. out of necessity, we kept him due to recurrent pneumonia.
Here he is grown w the bowl of Pooh Puddies I made him - skunk granola really. He never got to keep the bowl.
I ordered special paper to run the photos of me with my skunks and Newfoundlands. Everyone will get those.
Lita - the best sound volume I found was this one - had to look it up - this is a great plan!For me, no slideshow, no room unless a pavilion is needed for rain or high sun. But dinner afterwards will be in a restaurant large room. Maybe something there. Yesterday I was considering a commentary of the general lay out of that village where the restaurant is now. That would get a laugh out of sister and brother at least. I would be the one talking on video. Our brother is 11 yrs older. He did not have to endure. As kids my sister and I would find out THAT was where our mom meant when she said shopping this particular time and we would BEG to be left off in the middle of nowhere so we could walk home. My travelogue --- Explaining the curtain, bedding and towel store on the NW corner of the stop signs was where Mom bought out yellow chenille bedspreads with dotted swiss curtains to go w the yellow walls in the bedroom where we could never sleep. The bargain store down the road was the most dreaded place for discovering pure junk Mom had to have, she walked through slowly and checked out everything, we just melted into the smelly cement. The shoe store on NE side of stop signs where once she brought home some fine shoes for me but usually she went in there w the intention of spending $1 or less. And the punchline - if Mom could only see this now. Us and our older brother hanging out there and now my funeral meal there. WHAT?!
Lori - on the serious note - to die at home or at a nursing home of a hospice run facility. That is a question I face too. If I am too hard for Hubby to handle all my needs on his own, the nursing home is about 15 miles through the country to a beautiful location. I chose there 15 years ago. Otherwise Hubby wants me to stay at home, but I know he is not thinking of all the possibilities that could come at us. Even with hospice in attendance, I could end up in the hospital. And yup, evicted to a nursing home or to home. I guess we did decide the other day tht the choice of a full time nurse or helper taking shifts at the end that would work with us and hospice would be the most financially viable option, even over a few weeks in the nursing home. But all could be done for a few weeks.
The problem here is the man we lease from. I am not letting him know that this has gone to hospice / palliative care. I wanted to but he could decide I need to live in town. That makes me cry. Or he could consider what me dying here will do to his resale value or rental value.
Hubby is looking at the value for my toilet, how to do. He knows how but this one seems to be written in Swedish and Chinese combined. That seems to be getting changed before I die, lol.... The light cover over my bed may never happen and it is so extremely ugly I cannot handle it.
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More and more people are dying at home these days. It's only been in the last hundred years or so that there has/had been a movement away from dying at home. Women used to give birth at home too, in the old days.
If i were buying a home and the real estate agent said someone passed in the house, it would make absolutely no difference to me. [If someone were violently murdered in the property, however, that might be a different story.]
I plan to go VSED: "voluntary stopping of eating and drinking" when the time comes. If one chooses that option, it usually takes about 5 to 7 days, depending on how bad your organs are b4 they finally shut down. But with my 20+ brain tumors, one of 'em could start hemorrhaging at any time, and that'll be that.
Certain ethnicities are superstitious about buying a home where someone has passed, but I'm certainly not going to HAUNT my house after I'm gone. I'm going on to a better place and I plan on staying there.
L
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I think it's comforting to know you could be in a familiar place where you did your best living. The house I live in was owned by a lady who died at a very young age from brain cancer. Her widower and two little girls here when we came to see it and I was pregnant with my first. It didn't matter to me that she may have died here, only that she lived here.0
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I wouldn't mind either way if someone died in a house.
Yesterday the chaplain from hospice was here. We had a wonderful talk, a foundation for the future. I really like him and appreciate his thoughts and suggestions. He suggested a book for me too. It is a journal really. "Reflections of My Life" where there is room after questions or thoughts at the top so one can write what they are thinking, or reminded of now. He said his mom had this book but always put it off. One day he started recording her talking about each page, they went through the book in a few months and he has the recordings transcribed too. Very good idea.
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Bluebird - How are you feeling? My daughters, 33 & 28, discussed who would get what. We hadn't talked about that before last night. It was sweet to hear the small sentimental things they valued and how easily they said to give my boyfriend this and that. They love him for standing by me through all of this. I want a memorial service with my favorite music and I'd like my friends and family to tell stories about me. I haven't decided on the slide show, video thing yet. My 84 year old mother isn't too keen on my being cremated but that's what I want. I grew up on a farm that my parents leased. They haven't lived there since 1984 and the old farmhouse was torn down but that is where I grew up and that is where my ashes will be scattered.
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Kaylynne -
My lower back went out so this afternoon I did stuff not fun due to pain. Until now. I am glad your boyfriend has stood by you. Rare ? We would hope not too rare, but definitely the mature accountability and loyalty is something to behold.
My brother and sister and I had no problem sharing what was left for us to keep or pass on or get to our kids. Nice when it is peaceful.
I have yet to decide a particular place for ashes. There are many options, always comes down to beside a pond and near or under the pines. Maybe just here on this land.
Here is one of the songs on the cd I ordered. It is Orison.
and here is the Arran Boat Song. More down the left menu. Morning Rain is a favourite.
I purchased their cd. As I played it day before yesterday I was traveling in our vehicle and just kept crying, memories, my mom and all. It was my favourite cd and I gave it to her for the end as in I played it for her everyday, went earlier than my stepdad so I could because he was a crap to deal with. After she passed the music was never the same for me. After 25 years, the same but even better than before now since I have both her memories w plus the pain transcendence.
This music transcends pain in some way. I used to play it for my mom when she was intensive care / hospice at the hospital. Also Whistling Woodhearts. But for that I have to get a cassette player and order the cd from ebay. Soundings of the Planet. Soundings Tapestry here but my mom's crossing song was much slower......My mom was in a coma for a few days. My stepdad went down to cafeteria for dinner and my sister and I quick set up the music and her breathing immediately slowed and soon soared and waned and stopped. My mom crossed through the veil to the songs on woodhearts, wild music so very slow they took your breath away. Her breathing was with the song, I don't know if it was because she was used to hearing it or if it just helped her. But she floated away. When my sister and I were in the hall later we laughed from joy and the beauty of her final moments.
I want that. I want that.
Here is the other music I bring to the table today. If I haven't shared it here before.
the best OMG - just send me out on this one when it comes to the ceremony.
and this message because it is the last message to my family and friends.
Guess I will do some printing.
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Bluebird, Such beautiful songs. Do you live in the states?
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Hello ladies
I LOVE THIS TOPIC and ALL you brave ladies.
My sister-in-law and I both have had a recurrence of our breast cancers. I don't know what she plans to do yet but I plan to just live my life as fully as I can until the end. I worked in TRAUMA Units all my life and saw so much suffering that it made me decide not to fight the inevitable. I salute those with the energy and ambition to fight this. I really do. I am just not of that thinking. My heart goes out to the younger ladies with small children who really do not have a choice but to treat bc and suffer the physical and emotional consequences. My gawd how awful!. The love on these boards is palpable and I will be watching. We all need love and acceptance no matter what our decision is even if it is not the popular one. I am an upbeat happy extremely affectionate person and will be a loss to the world when I go but, we all go. I would value hearing from others who have decided to do no tx and how they are fairing. I am curious but not too afraid. It is after all a natural process that I just observed my father do in September. He had no tx and went very peacefully with my care and the help of hospice which was wonderful. He never knew he was sick until the day before he died. He had esophageal and stomach mets. I hope to pass with as much grace as he did. I have a wonderful partner who fears my death and I do not know how to help him. I am rather blase about this and act normally (???) so it is possible for him to forget it is happening for a little bit of time to time. I don't discuss it. I just came to these boards and started reading yesterday. I salute the bravery here. I feel I am brave too just in a different way. Any opinions are welcome as I do not pretend to know what is best for each individual. I love and care for you all. Each of you hang in there with what you are experiencing and know that your words heal the soul that is the ultimate survivor.
Love
Happy2Be
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Thanks for your post, Happy.
I was dx'd st 4 de novo from the gate in 2016, and i wasn't ready to just transition on. I respect everyone's choice, however. Had my bc been st 1 or 2, and then CAME BACK, I'm sure it would be a totally different story.
Would i fight or not? It would depend on how old i was and how extensive the mets were. Bones or maybe just one organ? Yeah, I'd probably fight for a while as long as i had decent insurance. Seventy-five years old and mets to lots of bones, multiple organs, and the brain, too...NOPE. I'd try to enjoy whatever time i had left - and take CBD tincture
L
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Happy2be, I think I may have posted on this thread before - but it would have been a long time ago. I was actually mostly absent aside from a couple of updates, the latter part of last year. What was going on was very much what you were describing with your partner. My partner - husband, best friend, lover, traveling companion for 30 years and 3 months - had become so paralyzed with his fear of losing me that he literally drank himself to death. Secretly. Oh we knew something was going on, and we knew he was sick, we just didn't realize the extent. So no preparations were made, no contingency plans in place, suddenly one morning he was so sick an ambulance was called and once at the emergency room he had to be sedated, and was put into a medically induced coma from which he never awoke, and died 10 days later. I not only had to deal with his death, funeral arrangements, family descending upon my household, but after that smoke cleared, figuring out the finances, which had become one hot mess. Apparently he was dealing with a kind of cirrhosis induced dementia, and he would swear he had taken care of something when he had not, leading to a plummet of our credit score and several black marks. I'm still working on fixing them. My lung mets make talking on the phone for very long a challenge, as is any kind of exertion.
Mostly, I just didn't know how to do life without him. He had left me a long time ago, in a sense. His coping mechanism (of which I was unaware) was to sit at his desk in his office, pretending to be working, going through half a dozen of those little half liter wine boxes, eat a bunch of breath mints, and come to the den and promptly fall asleep on the couch. All I knew was that when he wasn't working he was sleeping, and that made me think that all that was going on was severe depression (which is bad enough).
But I am moving forward. I decided to make the rest of my life (however long or short it may be) pleasant and comfortable. I am in the process of buying a house; it will be the first time in my life I will live somewhere of MY choosing, and I found my dream house. It spoke to me when I saw the outside, just a picture on the internet that suddenly I couldn't get out of my mind. I had my realtor take me to see it. The minute I walked in I said, it speaks to me! It was way out of my price range (I thought) and yet events have conspired to drop it in my lap, almost as a fait accompli. Being a praying person, I prayed that if this was not to be, that doors would slam in my face; instead, each door swings open as I step up to it.
My next step has been to secure the services of a franchisee of a business called Caring Transitions. They have the ability to help me sort through 30 years of accumulation and distribute to family, friends, online auctions, and an estate sale, donating anything that’s left, while at the same time packing, moving, unpacking, and putting away what I keep. I don’t have the strength to do much more than sit and watch and hopefully make decisions, but they encourage me to invite family and friends to help sort and pack, in order to defray some of the expense. I love the lady who owns the franchise; her previous job was as a college dean of students, helping young people (and their families) transition to adulthood. So it seems a perfect transition for her. She sat with us (my cousin/caregiver and I) for a long time, talking and hearing my story, before walking around the house looking around.
The new house, and the prospect of reclaiming my life and my self, have envigorated my spirit, and I’m looking forward to the next chapter of this crazy life.
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Mags - it is wonderful to hear more of your story. I have looked up the business and am searching for more like it in our area. I am incapable this move to pack. I don't want to throw all this on others either. So a business like that would be ideal.
When we moved here to this lease all the doors opened for us. I do hope a move will not be needed but I do know clearing the way is a long process and I want to get it done asap.
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Mags, reading your story made me feel like I was kissed on the cheek by an angel.
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magdeline-thank you so much for sharing your story. I am so sorry that you lost your husband and best friend. You seem to be on the right track getting your life in order and hoping for the best outcome. I'm believing with you.
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Today Hubby got the "You are in denial, sir." speech this afternoon. I commented on the way home that I am so awesomely sick, I cannot believe I can be so sick for so long and how is it possible. He said, "When was the last time you took some colloidal silver?" deflated, I said what I said. And how could he think that would get me better from this. About 20 minutes later I had a thought and told him he is right, it could help. Since my protocol is about killing off cancer cells I could be having a heavy burden of bacteria and colloidal silver is good for bacteria smothering. He said nothing, kept driving. I said, "Well, aren't you going to do a parade or something? I said you're right." He said, "When we get home I'm making my mark on the wall, that'll do."
Today printing my photo and poem page for ceremony attendees. And the obituary. Closer to done w that pile.
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