A place to talk death and dying issues
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And finally, I'd like to recommend a documentary from Laurie Anderson (artist and widow of Lou Reed), "Heart of a Dog," in which she explores the connections among life, love, dying, grief, and so much more. Here's the official trailer: https://www.youtube.com/watch?v=8PLWVXICQyM It's the kind of viewing experience in which you can immerse yourself on so many different levels and which may trigger deeper contemplation of one's own life and expected death. I plan to watch it again.
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Thank you for your thoughtful insights, Brenda.
I would never actually "blow my brains out" because, as my brother who is also facing a life threatening situation (end-stage congestive heart failure and COPD), has said, "Someone's gonna have to clean up that mess, and you wouldn't want one of us to find your brains 'Jackson Pollacked' on the bedroom wall, would you?"
My DD and DH and I talk about my "transition"all the time as I don't want the tip-toeing around that I experienced when my mom was dying decades ago. We've all come a long way since the 70s when death was barely even whispered about. Everyone kept their mouths shut or changed the subject. Not confronting it head on in two-way discussions causes so much grief, despair and loose ends not tied up, making it harder for everyone to find comfort, closure and move on.
Good comments about aetheism and death. Some have actually made peace with death, but I feel for those who have not....some don't even think their energy will once again become part of the universe's cosmic energy.
Once again, I pray for a peaceful transition for everyone.
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Brenda, as always, I find your comments insighful and interesting. Good points about the aftermath of shooting one's self, Lita. I am not at the point of discussing end of life with family members as I am stable at this time. I appreciate the advice and examples from both of you on talking about it when the time draws nearer. I do let several close loved one know I've had a good life. They know I've made the best of things since the mbc dx, and I also hope that it inspires anyone who may go thru something similar in their lives.
The other thing is, my faith and beliefs have sort of imploded and are trying to reinvent themselves, or I am trying to figure out what exactly my beliefs are. Raised Catholic but turned from it at age 16. Became born again Pentecostal in my early 20s. Hadnt attended church for twenty years then dx with mbc. Started wanting more from my faith then, seeking somehing more.....effective. Have been experiencing an ongoing epiphany regarding the Bible being written by men at a time when women were considered property, and my senses have rebelled at the patriarchal society I realize we've been brainwashed into. Still, after a lifetime of conditioning, it is hard to come to terms with all of it, to see a god with male and female characteristics instead of solely as a "lord".At this point, I am still grappling with what I think about an afterlife.
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Brenda,
Thank you for the comments. I have tried very hard to gradually introduce bad news (when I progressed to brain mets) to my husband and kids. Someone on another board talked about her family being in denial and being happy with that. I don't want that. I always share my results with my family. I don't want them shocked in the end. I will seriously consider how to suggest Five Invitations to them.
It's interesting that you suggest the Heart of. Dog film. Lou Reed is on of my son's favorites and we danced to Perfect Day at his wedding. I'll look into that.
You are right about being forthright. My husband is having the hardest time. Of course, he has to face it everyday. Since the brain mets progression I've had much more fatigue. My MO and pcp have both been checking for non cancer reasons for it. But my MO and I really think the leptomeningeal metastasis is the underlying reason. DH cannot accept this. He's pushing me to see cardiologists and endocrinologist so we can "cure" this fatigue. I'm doing these things and letting him accept reality at his own pace.
My daughter has had her own personal stresses the past few months, so I've stepped back from giving her too many details. She knows about the brain stuff and the fatigue, but not much else. Have to wait until she's ready.
Thank you for your support and a place to be completely open and honest.
Peace to all.
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I posted in another thread that I went to the ACS's Relay for Life on Saturday.
BIG Mistake.
We Stage 4 ladies are not represented well at these events - no booth, no nothing for "metavivors". These relays are geared for the so-called "survivors" who have "completed" their treatments (the ones who get to ring the bell at their last chemo infusion and declare, "Yay, my chemo is finally over!") and the families of people who have already died from cancer.
Don't get me wrong, I'm truly happy for the "survivors," but none of us will survive our Stage 4 condition...we will ALWAYS be in treatment, always dealing with side effects. No bell-ringing for us until we get our angel wings when we go to Heaven.
I was bummed out for the rest of the weekend. So what else came out of this Relay weekend? A lovely Haiku poem:
My cells betrayed me
A private war being waged
Never to be won
Ah, the sweet inspiration of rejection and disappointment. At least I'm engaging in literary pursuits again 😜.
I wish you all a week free from troubling SE's.
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Lita, I never go to those ACS relay things. Generally, they present a sanitized picture of what dealing with cancer is like. It has to be all about victory. The relays are often held at a stadium, adding to the "team spirit" image that as long as you wear all the right colors and your team cheers loud enough, you will win the competion between you vs. cancer.
Unfortunately, many people dont want to entertain the reality that some cancer will not/cannot be "beat". They dont want to hear it. That is human nature. I am done being frustrated by it.0 -
Lita and MrsM, something I've thought a lot about but never really voiced, about "surviving" cancer: although I was initially dxed stage 3, I suspected that cancer would be the death of me (so to speak). Maybe borrowing trouble, maybe innate pessimism, maybe because I've always been the drama queen (according to my family), but I feel like I always knew. So I was never surprised as the mets popped up. And I read posts, here and other places, from women who "finish" treatment and I think they are kidding themselves – what's the percentage who progress? 50%? I don't remember, but it's pretty high. My sister-in-law is a 20 year survivor; my brother couldn't even tell me what stage she was. (That could just be his forgetfulness though!) And I think my doctor realized early that I would progress, I've always gotten that vibe. Like today, I'm seeing him after my second round of Xeloda, and he's scheduled an X-ray and didn't say why. Sometimes he schedules scans early, or a PET instead of a CT. He seems to always be looking for the next shoe to drop. But his conversation is always upbeat.
Closing for now before ipad messes up!
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Divine and Mags, thanks for your support.
Mags, your dr sounds like a keeper. Just the right balance of honesty, yet keeping a watchful eye on things in advance so you don't get too fraked out.
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hello...i just got caught up on this thread and WOW...its almost like i missed the theory of everything.....all this heart felt sharing is much appreciated....
Lita, i love your haiku and your sense of humor.....i never understood how the SGK foundation could charge $1200 to participate in one of their events...that seems to be the big one in MI and i never went just on general principle....is it just me?
mrsM, i grew up going to church twice a week till my mom passed when i was 17 from BC.(she was 48). my faith has also morphed into something different that i cant really name,you just know when it feels right or not....and not being able to name it feels right to me....i dont think any one has gotten it completely right yet and its just to big and incomprehensible for us to get very close to describing correctly with the limited language that we have....i do believe that death will be like a birth into something different and i try not to be afraid to be born.
magdalene, i too have felt that this would be my demise since i was 16, only i thought it would come for me alot sooner....
kaption, i have learned that with my DH i have to leave him with his denial....every time i bring up just how sick i am or "we almost lost me didnt we" he will talk to me about it just fine and very tender and then maybe a day later he gets so crabby like to the point where i dont want to be around him and thats when i figured if i wasnt in sight he wouldnt be reminded of the convo and the fact that i will be leaving him sooner rather than later,he was pushing that away...there will be time for tears later, not now when we could be laughing....we have been very happily married for 26 years....it will be hard to leave
mrsM meeting my husband really got my spiritual wheels turning so to speak because the moment we met i knew that i had always known him, it still is the strangest thing and i had thought about doing a past life regression but then i figured if i was meant to know then i would have come into this world knowing about it....i sure did get a big kick of "omg, i have always known you"...so along with your feelings on the book which i completely agree with it also tells us we only have one go around....i have had the most amazing connections with people, i just know that i've known them before once i started paying attention....i hope our questions get answered and i hope life stays a mystery
you dont have a soul...you are a soul...you have a body......C.S. Lewis
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Hello all - this is my first post. Diagnosed with stage 4 one month ago. I am 53 and have a 12 year old daughter. I hope my mets can be contained and stable for many years and my team is hopeful but.... as you all know this could turn south very quickly. I just want you all to know this forum is helping me. The poetry especially is healing and I have copied and pasted much of it to my desktop. I need to teach my daughter to not be afraid of death. I'm so afraid for her mental health. I'm so terribly sad. Thanks for the help with the sadness and fear.
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zipmonk,
Sending you a big, warm welcome. We're so sorry for the reasons that bring you here, but really happy you found us. You're sure to find our incredible Community a wonderful, safe, and supportive space to share your thoughts, fears, and feelings. We're all here for you!
We look forward to hearing more from you soon!
--The Mods
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hi zipmonk....im close to your age (52) and have been stage 4 for a lil over 2 years.....im so sorry that you are joining us....my daughter is 25 and my grand daughter will be 4 on the 4th.....I've been collecting poems and quotes in a notebook for my girls along with short notes from me....i find it very hard to write in at times but I know that if I had one from my mom that I would still treasure it....the very first quote i wrote in it....
worrying doesn't take away tomorrows troubles....it takes away today's peace....author unknown
i wish you all peace for today
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Nan, nice post. Thanks for sharing some of your backstory. I agree with letting your dh stay in denial. Our loved ones must find their own coping mechanisms just as we do. Love the CS Lewis quote!
Zipmonk, hello. Sorry to hear of the diagnosis but am glad you found us. I was also diagnosed at age 53 and going on 6+ years and still stable. I hope you are browsing the forum for other threads full of info. One thread I want to share is called something like "Life does not end with a stage iv diagnosis...really!" It has been an active thread for over three years. https://community.breastcancer.org/forum/8/topics/... Please read a few of the recent pages of ts posts for inspiration. I hope you dont mind, but I had to chuckle when I see your first post on the forum in the death and dying thread. It is a very vital topic, and I am so glad and grateful we can all be blunt and honest about the subject matter, but please know you will find all kinds of other helpful topics on bco.org.
It was hard for me the first year to wrap my head around the idea of continuing to move forward with my life, but the wonderful women on bco sharing their personal experiences gave me hope and inspiration. I have had some of the best experiences of my life since diagnosis, not because of bc but in spite of it.
I have learned to see it as living with bc, not dying from it. Best wishes to you.
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Welcome zipmonk. The first few months are the worst. You will indeed find strength and inspiration from the wonderful ladies on these forums. I only wish I had found them sooner!
I went back and read thru some of my journal entries from last year. WOW, what a road it's been. Some times I feel like a pod person has taken over my mind and body. Sheesh...between all the drugs and the chemo brain, I AM A POD PERSON...allbeit, all riddled with cancerous legions, of course 😉.
Try not to lose your sense of humor about all this (yeah, the gods must be crazy and all.) It will help make your days a little brighter.
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Zipmonk,
Welcome to the club no one wants to join. Yes the first months are the most difficult I will be 63 shortly, BC since age 57, stage 4 since age 59 My son is 23 , daughter is 19 today no matter their age, I think thinking about missing various milestones is the most difficult You will find a more even road in a bit, tho there will always be bumps... We are here for each other
Be well
Nel
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Hi Zipmonk,
I'm sorry you had to join us. I was orignally diagnosed Stage 1 in 2005, at 43. In 2012, it came back in my spine and lung, Stage 4, i was 50. It's now 5 years at Stage 4. I've been married almost 34 years to my high school sweetheart, and have 4 children 31, 29, 27, and 22 (on July 5th), and 3 grandchildren 7 1/2, 6, and 4 1/2. They are all what I am living for. No matter how bad it gets, I tell myself, how much they would miss me and I them. So far it hasn't been all that bad. I've had some bad side effects from the past 2 chemos, but they lowered the doses and have given me more steroids before the chemos. There are lots of treatments out there. Just remember you are Living With Cancer, not dying from it!
Hugs!
Lynne
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I wish I could give you a big hug MammRay. What you are feeling is absolutely normal. Speaking to a therapist is a good idea. It is a crappy place we are in, of course we are going to feel like we are walking around with a black cloud around us at times. Lets face it, we are trying to live with a body that is trying to destroy us from the inside out.
There is nothing wrong in admitting that sometimes what we live with on a daily basis just breaks us. We can have a bad few hours, a bad few days, then pick ourselves up and move on, it's all fine again. Then there are times when it feels like we have been dealing with this forever, and it's just too damned hard. I have days where I just need to take a deep breath and hope I make it through the day without hitting anyone over the head with a chair
I have this quote on my wall - I like to remind myself when I'm having a particularly rough day, that my track record for surviving rough days is 100%, and that is pretty damned good.
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Yes, hugs and prayers to you. This is a tough one. Do talk to someone who can support during this time. Please come here when you need. The is also a leptomeningeal board.
Hugs
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Mamma, I am sorry to hear of the rough time you are having. It is good that you are going to talk to a therapist. I do not know if you take antianxiety meds, but they helped me and I recommend them if you arent already taking something. Another thing, I find when I go thru rough times, journaling helps me. I will write at last three pages every morning about all and anything that is on my mind. It is very theraputic. My best to you. Many hugs.
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Hugs and prayers going out Mamma Ray.
Yes, we all get weary from carrying this burden of chronic illness around with us. We don't get to "ring a bell" when our treatment is over because sadly it will NEVER be over.
I share your weariness. But we are all here to help each other and hold each other up.
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STUPID CANCER....I BLEEPING HATE YOU....I hate that you always make me go to the doc (last place in the world for me), where it always involves pain...it all hurts the poking and sticking me with pins like some kind of voodoo doll (if only i could pick who got hurt Mr Cancer,if only), thats not including the emotional pain....YOU SUCK CANCER....i hate that you've aged me 20 years in only 2 years (I hate that I am "lucky"to have gotten 2 years)...I hate that you have shrunk my height by an inch already , how far will you go....I hate that my feet feel like giant bruises and that you have given me CANKLES i mean come on,really....Im gonna stop now cuz we all know I could go on....and who's gonna win in the end?....some would assume it would be Mr Cancer but I must remind them that I will be far away and Mr Cancer can just see what he can do with the empty space suit I was using that he destroyed...doesn't he know he cant touch my soul and that will forever remain cancer-free.....is there any meaning at all to this?....why cant we enjoy this life free from all this pain, love our friends and family, and die peacefully in our beds of old age?.....well, my fellow "close to deathers" it sure does make you look at life different doesn't it....or it could be its the week leading up to the full moon and we're all just lunatics....lol.
so i just came back and reread my post...i was going to delete it cuz i dont want to make anyone feel worse but ya know, we are on a thread about death and dying and I honestly dont have a clue on how I'm supposed to feel, I dont remember ever doing this before....I couldnt tell you if I am scared or anxious....will I welcome it? (thats a scary thought)....there are so many unknowns and although any one can think about this, we are kinda forced into an accelerated program and its so hard to find the energy for it.....I feel that all your posts help me in some way, I share your pain, I'm not alone, you make me laugh (its always the best when your not supposed to like with this dying stuff',lol) , you have amazing insights I never would have thought of...so thank you all for posting and I'll just leave my first thoughts there....keep shining till you are that star....
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Nan, you hold him down.........and I will kick the shit out of him!!! I'm just in the right mood today (that's what 36hrs without sleep will do).
Don't think you ever have to delete your thoughts here, this is where you can just let it all out, and know that we are standing right there beside you ((Hugs)).
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Nan, that's right, no deleting necessary. Spill your guts and tell it like it is; no apologies necessary. This is the place to get real and stay real.
The first year I was diagnosed, I also was a jumble of emotions that took me months to sort out. Between the oncologist and my primary physician, I was prescribed numerous antidepressants that gave me horrible feelngs. I finally had a revelation that I was not really depressed; I was experiencing anxiety and the antidepressants were exasperating the condition. Once I was able to define what I was feeling, I was prescribed the right type antianxiety meds and it helped make all the difference.
It is okay to grapple with all the heavy feelings and confusion this diagnosis brings. The struggle to sort things out is necessary. I learned thru the process that I had to be okay with uncertainty, push that aside, and move forward with daily living.
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Hi everyone.. I am new to this but encouraged by the posts I have read and feel like contributing .. Recently diagnosed with stage 4 Metastatic breast cancer which has spread to both lungs, not sure about bones yet waiting on results. I was in remission for 11 years since initial bilateral breast cancer in 2006 and now this.. Ok will just have to take it on again and deal as necessary. The outcomes going to be different this time around but hey take each day one at a time. My two girls 11 and 12 don't know the severity as yet obviously my Mr Unique husband does and is on the rollercoaster with me. Thanks for the opportunity to share and read your posts. I hope to contribute for a while.
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Welcome, UMEUS, to the club no one wants to join and every one who's already in it wants to leave.
Yes, one day at a time is the way to do it. There are so many new Tx out there, so once you get over your initial shock, a new normal will set in. Many St 4 women are 7-10+ years out, and I hope you have many, many good years ahead of you.
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Well, I don’t feel so bad now. I'm watching some commercial, and they threw up a bar graph on previous average life expectancies, and they break down like this:
1940 - 63 years. (Disclaimer...I don’t know how accurate these are...)
1965 - 70 years
1990 - 75 years
2015 - 80 years
So, if I had been born in 1878, I'd be right on target to die at around age 63 in 1940 (give or take a year or two). Of course, I could have it all wrong...maybe if I was BORN in 1940, I'd only live 63 years, but I don't think that's the case since my grandparents were born in the late 1800s and early 1900s and lived into their 70s. I'm thinking that this chart depicts that in 1965, the average person died at around 70, and in 1990, the average person died at around 75, etc.
Now they say the average woman will live to be around 86 and the average man about 84. I don't know about that, not from what I see around me: More and more people getting cancer, heart disease eclipsing all other diseases as the number 1 cause of death in women, diabetes everywhere, and the childhood obesity epidemic because they eat way more junk food than we ever ate and don't play outside anymore or have enough recess and PE at school.
My dad made it to 85, and my MIL made it to 83...they were both born in the 1920s, and passed before 2015. Now that the Affordable Health Care Act is being dismantled, and more and more people can't afford decent health insurance, and all the new stressors we have now that our parents never had, I think the average person born after 1990 will be lucky to make it to 75.
Sadly, I won't be around to see if I'm right or wrong.
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My dad's much older brother actually blew his brains out after suffering for years with emphysema. No one steps in to clean it up...the family has to do it, unless they are rich enough to hire someone. My dad, at around 60-something (35 years ago and long gone now) had to do it.
Moral of the story: If you must die, do it neatly.
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katty...im not encouraging anyone but i think insurance (home owners) may cover it....i have a friend who owns a carpet cleaning company with machines that have powerful extraction and they not only did flood extraction but also crime scene extraction and he got paid by the insurance companies and he said it was very lucrative cuz no one wanted to do it or had powerful enough extraction methods to get all the smell out.... i know they did fresh murders/suicide and old (liquified) ones so im not sure maybe if you rent your place you wouldnt have insurance or maybe times are different now and they cover the real messy ones....i just couldnt imagine having to do that myself...yuck...sad and mad
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This happened a long time ago, but I have since read about companies that specialize in such things. I live in a huge city, so not surprising, but yes, it broke my heart that my dad had to do that himself.
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