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Have your views on death and dying changed?

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

I'm curious because mine certainly have. If someone or something is suffering I am much more for a quick death than a long drawn out, miserable death. We've lost two people in the past week, on the same day, and I realized how much my views have changed. I no longer want to have someone hang in there as long as possible for the sake of the loved ones remaining. I want the person who is ill and suffering to have as quick of a death as possible. When our dg was diagnosed with cancer last fall I had her immediately put to sleep. She was a rescue who was very sensitive and I could not put her through a bunch of nasty tests and painful treatments just to have her a little longer. She wouldn't understand and it would have been cruel.

Last week my father-in-law passed away as well as an older family friend. Both had had cancer previously and both had dementia for some time. While I'm so sad that two wonderful men are lost from our lives, the truth is that they weren't themselves for some time. And both were bedridden and not enjoying life in any way. I used to think it was terrible and insensitive when people would say things like 'their suffering is over'. But it's true. I'd never say it because in that moment all the person wants is their loved one back in any form. But I feel like it's the truth.

I've had a few times during this battle when I've felt so absolutely horrible that I wished I'd die in my sleep. At the time I'd feel like it could be my new normal and I couldn't live with it. But I've gotten through it and have come out the other side and am doing okay today. But if there was no chance of it getting better I'd welcome death.

Anybody's thoughts on this would be appreciated.

Jan

beaumontdave's picture
beaumontdave
Posts: 936
Joined: Aug 2013

I'm with you Jan, lingering for it's own sake never made sense to me. If the quality of life isn't there, over a period of time, I think it should be available to painlessly end one's life. Cali's adopted a way to do so, but I don't know how complex it is, not that it should be simple either, but it should be available to any reasoning adult. Not to politicise your thread, but my views became clear caring for Cindy at the end. She was at home and I was in charge of care, and as you know, I wasn't going allow her to suffer. I'd heard too many stories about brain tumour patients screaming until they pass out only to wake and start again. That wasn't going to happen, but she just slipped into unconsciousness. That experience made things very clear to me and I've prepped for the moment I need to choose. This may make some uncomfortable, but I feel quite at peace that, at some point I can choose my exit, if I need to. As you say, wanting a loved one to stay inspite of ongoing and permanent miserable situation, is just selfish desire......................................Dave

SandiaBuddy's picture
SandiaBuddy
Posts: 812
Joined: Apr 2017

You know, I have thought about posting a thread on mortality, but I have so far resisted, so thank you for broaching the subject.

Everyone will die, but many of us have a closer expiration date.  Before cancer, I dealt with it on a rational level, but now I have to deal with it on an emotional level.

One of the things that helps me is to consider mortality on a daily basis when I meditate.  It has taken a lot of the emotional edge off the subject.

I do not plan to linger and in all probability I will take affirmative steps to end my life when the quality of life does not justify continuing.  My state does not have physician assisted suicide, but hopefully when the time comes I will have the opportunity to move to a state that honors that right, otherwise there are messier but still effective techniques available.  

This is an interesting topic.  I look forward to reading other's comments.

Thanks, Jan.

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

Quality of life has always been important to me.  I have thought a lot about death since being diagnosed at stage 4.  I am by nature a planner and like to be prepared for what I will face.  Many people I know don't want to talk about death.  Even planning my estate (which I should have done before the diagnosis) brought concerns that I was giving up (farthest from the truth).  When I initally went home from the hospital, the doctors won't tell me anything - so I though I might only have days.  But then my onocologist made an appointment for a PET scan so I thought that he expected me to live until then.  Then there was appointments for MRIs and port surgery and then chemo.  People say you should live every day like it is your last.  I don't think they really do that.  It is paralyzing.  Is this the last time I will hear the birds sing?  Is this the last time I will see the the spring flowers?  Is this the last time I will see my loved ones?  Is this the last time I will walk my dog?  Paralyzing.  Not knowing when death will come makes it hard to know what to do about treatments.  Will the treatment help me or hurt me?  Will I be trying treatments that have powerball odds of helping me?  Will I be trying treatments right up until my death?  I don't know.  Will my onocologist let me know when I need to go on hospice?  I am not sure. I knew a lady who had cancer and her family kept pushing her to try treatments even though she wanted to stop.  When the doctor finally ordered hospice, she died the next day.  I think that it was more about her family not being able to let her go than about her comfort/well-being. When I die I hope that I go quickly and suffer little.  Some descriptions I have read of liver failure, however, are prolonged and painful.  This just isn't easy.  

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

Something I don't want to do, but will have to, one day. 

When I was going through the worst of this journey, I asked my friend in Oregon, where assisted suicide is legal, if she would host me. She said yes. I doubt I would actually put her through such a traumatic experience, but it was on my mind. 

Several of my family have had Alzheimer's, including my mum. It is wicked! To watch such a strong woman become a baby, was horrendous. I was happy when she passed away. I mourned her loss before her death, when she was alive but not living. 

I can't imagine not being alive. HA! I just want to live as long as my kids are alive, then I'll happily go.  Too bad we can't make it so. 

Tru

 

darcher's picture
darcher
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Joined: Jun 2017

  I to used to think that the longer a person lived the better but the quality of life matters more than I used to think.  At one or more points when I was nearly bed ridden and wasn't able to go anywhere due to the mostly mental agony and bathroom accidents I thought about it.  I'm still not 100% but am close enough that I'm in a lets see what happens phase.  If I'm stuck in the house permanently I don't think I can go on.  It would make no sense.  I'm not home bound but have lost a lot of that get up and go I used to have.  Maybe it's depression or just the anxiety of not knowing where I stand.  This takes at least 5 years to be considered cured and I'm coming up on my first year.  Seems like it was just yesterday that the doc came in and said we found a tumor.

  In a couple weeks I go back in for a colonoscopy and I'm not certain it's going to come back blank. I hope so but I'm not confident.  I've got too many symptoms I had before surgery that crept back in.  Which leads me to a question I'll probably post in a new thread.  If it does come back do they repeat the same process including radiation?  

  When the other woman who was a friend of my wife died back in December it was a reality shock.  Her and I were both diagnosed the same month.  Although hers was pancreatic which has a 1% survival rate it got me thinking that even though mine has a much higher survival rate it's still not a guarantee.  

Annabelle41415's picture
Annabelle41415
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Joined: Feb 2009

It's a subject that no one really wants to talk about.  I've often thought about wanting a quick accident or heart attack to not linger also.  My mom did for 14 months and it was hard to watch.  I'm sure no one wants to go through it but it is part of life and all I'm wanting is when I'm to that stage where I'm not able to handle pain anymore that they give me everything in their arsenal of medicine that is available as I'm not wanting my last stages of life to go out in pain.  I'm still afraid of death even though I'm a Christian.  I've prayed every day for my whole life and even though I'm wanting that life with Jesus - I'm still afraid.  It's hard and you've been through a lot.  I'm wishing and praying for some good thoughts ahead for you. 

Kim

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

Thanks for being so forthcoming everyone! It's good to know I'm not the only one and that my thoughts and feelings aren't off the wall. It's tough having to face your own mortality. I'm grateful for every day that I'm feeling pretty well but I do not want to linger on at some point being a burden and being miserable.

Jan

danker's picture
danker
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Joined: Apr 2012

The ideal way to go is in an airline crash on your way home from vacation.  It's sudden and probably painless. and your children sue the airline for a bundle.  If only!!!

abrub's picture
abrub
Posts: 2066
Joined: Mar 2010

But going through treatments and seeing others made me realize that there are fates worth than death.  I'm fully on board for quality of life; I don't want to simply be breathing, I want to live my life.  When that isn't possible, it's time to go.  None of us will get out of here alive.  I've opted out of treatments that could potentially cure my cancer (tho definitely still questionable) because the side effects would preclude me from enjoying life.  I'd be tied to my house and my bathroom.  Thanks, but I want to keep kayaking and keep living.  My choices aren't right for everyone, but my family knows, understands and agrees.

Thanks, Jan, for bringing this up.

Alice

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

How fitting to discuss this now. My sister's best friend died of breast cancer about 10 years ago. At one point she told my sister that she couldn't keep living for others. I think there's such wisdom in that statement. It touched me deeply because I am more concerned about leaving my family and not being able to keep fulfilling their needs, than I am of the process of dying. 

I have suffered quite a bit already; and I know there are pain meds to help at the end. Seeing both of my parents die of cancer, I will choose hospice when the suffering becomes too great. They make phenomenal decisions and keep patients comfortable and at peace. I can't believe I have not considered assisted suicide. Before all this I would have probably thought I'd turn to it. But that's not entered my mind. I believe it should definitely be an option, but it's not for me, at least not yet. 

I try to think of times when I've been so scared, like going into surgery...and how they gave me drugs to calm me, and I was immediately at peace. And although recovery was pretty awful at the time, I woke up smiling every day, thankful for life. 

I have always related to Jesus through his suffering. I look at this as just another episode in my life that is maybe a little closer to the suffering He experienced. 

lp1964's picture
lp1964
Posts: 1236
Joined: Jun 2013

When we are young and healthy it seems we will live forever and have plenty of time to do things we want to do. I was 49 when I got diagnosed and after I finished treatment I got keenly aware of my mortality. Since a had at least a perceived brush with death I have two contradicting feelings about it. For one death became kind of familiar and real. Two it has become totally real that it’s gonna happen again, it’s just a matter of time. It’s calming and unnerving at the same time. 

 

I dont know how id would react if my cancer came back soon or just got old and my life would just end naturally. Doesn’t matter I guess, I just don’t want to suffer and struggle. 

 

Thars why I chose to live life to the fullest. Nothing crazy, just make sure that by the end of each day I can say that this was an awesome day. I practice what I didn’t understand when I was younger: living one day at a time. 

I remember Jeff said it ones when he was getting to the end: we all gonna day and some people say that we can get hit by a bus tomorrow. But when you are seriously ill you see the bus coming at you full speed and and the high beams on. He was right. Cancer just made me sweet of death much more, but I worry about it when I get there. 

Woody Allen said: I’m not afraid of death, just don’t want to be there when it happens.

Lets hope we go out easy.

Laz

 

SandiaBuddy's picture
SandiaBuddy
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"when you are seriously ill you see the bus coming at you full speed and with the high beams on."  I like that analogy.  Or better yet, coming at full speed with no brakes, the high beams on and the horn blaring.

JanJan63's picture
JanJan63
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Joined: Sep 2014

That's a good way to describe it, Laz, thanks. I've spent enugh time thinking about it and doing foolish things like looking at a young tree and wondering if I'll see it grow, looking at my family and pets and wondering how long I'll be there for them. I have dwelled on those hard and sad thoughts and it hasn't helped me in any way. Now I just don't think about it much at all. It's coming, as it is for everyone. But in the meantime I just want to live. And live as well as I can.

I do as much as I can every day. It drives my husband crazy because until recently I was too sick to do much of anything and he's scared I'm going to burn out. But until I have to go back on chemo and everything comes to a screeching halt, I want to do as much as I can. That's what gives me joy and fulfillment. Every time I'm out in the sun I'm grateful to be able to do so. Last summer I was on chemo and was sun sensitive and was in the sun for no longer than necessary. This year so far I can put my face to it and drink it in. I'm even getting a bit of a tan!

My horse is having a medical issue, he has Cushing's, so I have to go out there every day and give him a pill. Carefully disguised in a cookie, by the way. I am able to do so right now. But I had my CT scan yesteerday and I'll get my results next week and if I'm back on chemo I'll have to figure something out for him. Like make up the cookies and give them to the guy who feeds them and he can give it to him every day.

I'm praying that I'll have the summer this year without chemo. I can do it in the fall, hopefully. I can't avoid it, it's just a matter of when. Yeah, I'm going to die one of these days, we all will. But until then I hope to live my life as well and as happily as I can.

Jan

PamRav's picture
PamRav
Posts: 239
Joined: Jan 2017

Even as my treatment is finished , for now, and I’m playing that awful waiting game that we all must play , will it come back or not, is that pain in my chest a tumor etc etc the thought of death is never too far away from my mind. When the time comes will I be brave and make courageous choices? I’d like to think so.  As most of you have expressed here I have no desire to linger just for the sake of staying alive.

i worry too, that I’m not always using the time I am now blessed with in living life to he fullest.  Is cleaning out my closet, cooking meals, napping, doing the ADL really living life to the fullest?   There are times that I feel I should be doing something profound.  Only I’ve never been able to hone in on what that profound might be.  Traveling no longer holds an interest for me, I don’t think I’ll be writing the great American novel, not going to be climbing the high peaks.  I guess I’ll be sticking with the daily mundane. In truth I feel most comfortable and the safest in my own home curled into my chair with a good book at hand.

Realizing that I’m just one little person out of millions, all of us in life threatening circumstances trying to make the best of it.  Sometimes feeling bold and empowered and other times Sitting feeling sorry for my self.

peace to all of us here,

pam 

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

I've known people up and leave everything and every one to travel the world. I admire their courage, but I certainly do not have that kind of money. I still have to work part-time, two jobs, I will never fulfil my bucket list; BUT, I LOVE my two jobs. I LOVE every single day the sun shines, or the rain pours, or the wind blows. I sing while I clean. I LOVE the old Mowtown & R&B songs, I sing along and dance while I clean. Do everything with a purpose and you're not wasting time. 

Just my thoughts, Pam. 

Tru

SandiaBuddy's picture
SandiaBuddy
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Pam:

Only you know what is right for you.  When I was first diagnosed and did not know how long I might live, I looked closely at how I was living my life and decided I might fine-tune a few things, but I would not make wholesale changes.  I continue to feel the same way.  I think attitude has a lot to do with satisfaction in life.  As long as I see the sun shine (or the rain fall), hear the birds sing, see the children play, listen to jazz, have a glass of wine and make occassional trips (I love to hike the Grand Canyon) life is good for me.  

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

I remember when I was first diagnosed; other peoples reactions were worse than mine. I had two people burst out in tears. The look of sorrow on one face was extreme, so much so that I put my hand out to her and said 'Its OK, I'm not dead yet'. I swear there were people planning my funeral. 

Once I got past the initial shock and the 'I'm going to die' stage, I decided that not only am I going to live, but I am going to live until I'm 82.  I chose 82 because at that point, our lovely friend Danker was 82, and I chose him as my hero. Now he's about to turn 86, so I've upped my goal. Of course, I plan for Dan to live to 100 at least, and I'll just keep upping the goal with each of his birthdays. 

I will happen when it happens, I just pray it doesn't happen until.......

Tru

 

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Great comments! I think people expect us to travel and do pointless bucket list stuff. I prefer sitting on my porch in my neighborhood of small homes, checking out nature. I appreciate being able to drive to the grocery store. And I try not to wonder if this is my last Summer here on earth. There is such wisdom in living one day at a time indeed. 

po18guy
Posts: 983
Joined: Nov 2011

"My hide's about as tough as it can get. Gonna die some day, but I ain't dead yet"

  -  Mark "Porkchop" Holder,  blues singer

I am Catholic. I look forward, not to death, as that is a purely human term and perception. I look forward to life, and life in abundance. I know the purpose and valiue of suffering, and I suffer also for having that radically counter-cultural view. Yet, I do not turn away from suffering. In the model of great Saints such as Teresa of Avila and John of the Cross, I strive to embrace suffering, as my Savior suffered for me.

Like I said, radical. 

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

You all have been so honest in your answers! I really appreciate it, thank you. I hope the discussion has been cathartic for you as well as it has been for me. 

I agree that you have to enjoy the little things. I doubt I can ever go on a real trip or something like that. Between money issues and my health I can't see it happening. But some really lovely and amazing things happen right here at home and I enjoy every one of them. Some of you are on my facebook so you know I recently got to hand feed milk to an orphan calf. I also got to hold a week old baby goat. And on a more mundane level, I'm grateful every time I can go to the grocery store by myself. For months until about March I couldn't handle even going with my husband. If I went I'd have to go sit in the car partway through.

I'm so grateful to just be able to go out for dinner with my close friends. And that I can drive with my husband tomorrow to the town two hours away where his dad's celebration of life and burial are happening. I'm so grateful that I have the strength to go see my horse every day now because he's been sick and has a medication he needs every day. I'm grateful to be able to walk my dogs and throw a ball for them in the yard. I've been working on our garden and that makes me happy and content. I enjoy the little things in life because being sick with chemo or from other complications has taken even those very basic things everyone takes for granted away. But now they're back and I am so very grateful and thankful in my prayers every night for the blessing of being able to do normal, everyday things.

Jan

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

   I did not fear death when I was diagnosed and I still don't.  To be quite frank I was not very happy when cancer found me. I knew how friends and family felt about me ending my own life. So here was the perfect solution , I could die without a guilty conscious. Well I havent died and i'm still not worried or scared of it.  Just slightly miffed at the perverse nature of life and the universe. Perhaps the secret to survival is to genuinely  not care whether you do or not. I have been cancer free for just over 20 years and there was probably three years at the start that I had active cancer.  I have suffered a lot during those years but i just keep going, such is life. Ron.

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

I just finished reading a book that Beth suggested in an earlier post which is also on Bill Gates "Top 5 Books to Read this Summer". "Everything Happens for a Reason" is a memoir by Kate Bowler, a Duke divinity prof, diagnosed with stage IV colon cancer.  A passage that really resonates with me occurs when she is pondering her own mortality with her doctor and he tells her "We're all terminal. Don't skip to the end. Don't skip to the end."

So that's how I am living my life.  "Be here now". Being aware and present in every moment of my life.  Trying to be a better version of myself everyday.  It's aspirational and keeps me focused. Similar to Tru, I do alot of dancing... Laughing 

 

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

My friend (in England) and I were just bemoaning (via Skype) how we hate the saying 'Everything happens for a reason'. Its an awful blanket statement.  Ask that to the child who has been tortured and murdered by his parents, or the vulnerable person who has been kicked around and trodden on because he can't defend himself. Innumerable numbers of people since the beginning of time have suffered for no reason.   - Well, thats my opinion, and you know I'm never........  

For some, yes, things happen for reason, for others, they are the sad end to others evil.  No, I don't like that saying at all. 

I would still read the book though.  And we definitely shouldn't skip to the end.  

Keep on dancing, Cindy - and running. 

Tru

Cindy225's picture
Cindy225
Posts: 172
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My bad Tru- the full book title also includes  ...And Other Lies I've Loved...  Kate Bowler has lots to say about that expression as well as others...  Wink 

Enjoy the book. Laughing

Cindy

 

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

Yes, we are all terminal but it is very different if the timeframe is weeks or months instead of years.  I am not afraid of dying.  It is that I am not ready to die.  Who can be at age 50? 

Noneya's picture
Noneya
Posts: 35
Joined: Jan 2018

I faced it over 37 years ago, first in Air Force, then in Law Enforcement and finally in Hazmat removal. So when I was told about the cancer in me I was mad that after those carreers it was something mundane in my mind that would get me. My bucket list has been changed to enjoy what I can. When I believe I can no longer enjoy life, I figure I can stop treatments and go for a little walk into the desert and let nature take her way with me.

lp1964's picture
lp1964
Posts: 1236
Joined: Jun 2013

The end of your post reminded me about something. I grew up in a tiny village in Eastern Europe where we lived the way most people lived like 200 years ago. I became a citizen of the computer age with all its curses and amazing benefits. Even though I enjoy this modern life tremendously sometimes I imagine finishing it the way it started. Would be so liberating living without the concept of time passing too fast by our or perception. Without all these labels, titles and posturing. Just being a pure human being doing the basic tasks of life. 

We know too much: back then people didn’t know when they were born, how old they are, how long is a year or a decacade and how long they are supposed to live by the statistics. Pain was just pain. Didn’t know where the organs were in the body and know all these illnesses that could be happening inside them. Didnt stress about almost snything and at some point they got week and tired and died. 

 

Id like to experiences that just once more: just the way things are without any of this extra stuff and often make belief concepts. I’m not spiritual and completely fine with the fact that when my body stops functioning my consciousness all me perceptions, sensations and thought will end. My body will deteriorate and fall apart into the building blocks a was put together with before I was born. I’m kind of excited that my building blocks will be used up again making brand now babies, animals, plants and minerals and this process will go on forever and ever.

Krishna: I would rather die 10 minutes early than 10 year too late. 

Laz

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

I like that Krishna saying, Laz. It's so true!

Jan

Phoenix_66's picture
Phoenix_66
Posts: 118
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During my ongoing 12-year battle, I have often thought I wished the suffering was over but my faith almost always reminds me in some fashion of the horrific suffering Jesus endured for us. With that thought, the least I can do is to wait on His perfect timing to remove me from this temporary life even if that means more suffering. Joshua 1:9 - "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." 

I have spent some time making preparations for that day such as finally retiring (even though I still had a lot to give) so that my family will be taken care of financially after my death. My retirement allowed me to take an option where my wife will receive the same check I get for the rest of her life after I'm gone. 

Even though it is sometimes hard, I'm not worried and actually look forward to seeing the good God is working out through this trial.

 

Annabelle41415's picture
Annabelle41415
Posts: 6073
Joined: Feb 2009

I'm still afraid of dying - not because of dying but because I'm afraid I'm never good enough, but keep reminding myself that it's God's wonderful Grace's that will allow me to be with Him.  You have done well preparing, and it's good to hear that you are comfortable with the time here but allow yourself to "go home."  God Bless.

Kim

beaumontdave's picture
beaumontdave
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Joined: Aug 2013

An NFL player named Dwight Clark passed yesterday of it and Stephen Hawking passed a month or so, of a variant the made him the longest survivor of this disease ever, 40+ years frozen in that chair. Clark passed after a year of it at 61. I can't say which path I'd prefer if I had to choose, because either way you lose control of making that final choice we've talked about, you're as helpless as a baby. I guess it's in my head because I have a "cousin" of ALS called CMT Disease, which is the most common Muscular Dystrophy. Both deal with the breakdown of nerves, ALS just eventually gets to them all, while CMT generally just affects extremities. Severe cases put children in wheelchairs for life, I just was a bit slower with balance and clumsiness issues, but have had a very happy, regular life. Stoic philosophy, mindfulness, and other disciplines teach acceptance or indifference to things one can not change, but for all the crap I've dealt with, I'm grateful I've haven't had to travel that path. For all the reading and effort I've made to direct my thought and curb unproductive emotional excesses, that disease and the choices that come at you, gives me pause, even now.

Noneya's picture
Noneya
Posts: 35
Joined: Jan 2018

Your right knowing to much seems worse than not at times, instant info is killing us faster, my Grandfather was Amish and married a Gypsy right off the boat, When he passed 25 yrs ago he was between 102 and 110. We know he completed 8th grade and one of his daily duties was to ring the school bell. When cleaning his house after he passed we found the bell in the attic. We let the school know what had happen and they gave us the date of the theft from old records. And I'll be hanged if they didn't let us keep it, hangs in my dad's basement now. He woke one morning two days after my third kid was born and baptized in the familyway(walk through the pig barn and bath right after) said he was going back to bed to sleep and he could tell Grandma about her Great Granddaughter. I called my dad and brothers and they came by to see him, ( Grandpa always said "I can sleep when I'm dead") two hours later the Dr. pronounced him dead. He had cancer from head to toe but never knew. He had fed the cows and milked them that morning 3am. I don't mind knowing if the Dr has hope for me but don't just keep me going forever, let me choose my day of judgement, and may I be judged by God with dignity in tack. Though I now live in the desert, I grew up on the Great Lakes and spending my last hours fishing would be great.

 

And there are times i have to take comfort in the story of Job, and believe that these are just tests I will survive.

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

He was out in his garden, doing what he always did, working hard, went to bed and never woke up.  When they did his autopsy, they found Cancer everywhere.  They said he 'must have been in pain', but he was your old school country man, never a complaint.  

I also agree about knowing too much.  I have extremely high cholesterol, but I'm allergic to all statins and even Red Rice Yeast; so I quit getting my cholesterol checked. I'd rather not know, seeing that I can't take meds, and have no desire to cut down on my butter and cheese. 

Sometimes knowledge is a double-edged sword. 

Tru

SandiaBuddy's picture
SandiaBuddy
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Increasingly, not knowing has appeal. . .

beaumontdave's picture
beaumontdave
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Joined: Aug 2013

I heartily held to that point-of-view in order to compartmentalize my CRC in my mind, and allow myself freedom from thinking about it any more than I had to. I expected they got it with the colectomy, I thought the chemo would clean it up. When the three mets showed up, I was floored for the moment, then felt my surgeon would get it. When it popped up again in one spot in the liver, I had faith they'd get it out. Cock-eyed optimism and asking for no projections, estimates, or guesses, seems to have served me well. Of course, I tried to carry that through my wife's brain tumor, keep her mind off it, focus on fun/adventure as much as I could, getting lost in work and home projects.  But by 4 1/2 years, when it showed back up to stay[2013] I coulld no longer contain my private fear and anguish, knowing her prognosis, being there with every treatment, procedure, and hospitalization. That's when I came here to express my pain and fear.  I'd been reading since 07, but I had to talk with, and read about people walking similar paths. There was no one else to talk to, and if I broke down, it was only in front of a keyboard.  Anyway, there is something to be said for limiting the focus, getting educated certainly, but not obsessing more than is useful. I know some here have and do dive into the challenge of it, learn all they can, get hyper-involved in every aspect, change their lives and lifestyles, and I applaud their courage, and know that people taking charge of their care, has saved lives, and changed the quality of care they received. My approach served us well, we had a good quality of life up to her last Christmas, and she was gone on Apr. 30. If asked now what I think of it all, having read  some on Stiocism, mindfulness, and other philosophies, it still comes down to the "Serenity Prayer", having the wisdom to know what you can and cannot change, as fine a line as that may appear to be.  A final note; my tests don't coincide with my anniversarys at all, so it feels odd to say I'm 11 years out and 4 years NED in Sep. when my checkup/bloodwork is in June and my scan won't happen until Jan..   So today I'll celebrate the test, CEA is solid at 2.6, and all is well.....................................................................Dave

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Helen321
Posts: 1388
Joined: May 2012

I'm okay with dying. I accepted it five years ago and by chance at this point I got to live. I'm living in a shell of the body I used to live in, became single, who'd want to date me like this. There are things worse than. Death={ .I think the hardest part of the concept of death to me is the idea that my things with still be here when I'm gone. My pictures, my decorations, my garden, my house. And then of course my kids and my family. All the good times they'll have without me. All the sad times I'd cause them. Overall though death is okay. I don't believe in an afterlife and like my cat that just got returned to me, I'd be a pile of ashes. That's okay. I won't know that I'm dead. 

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Donna Faye
Posts: 205
Joined: Jan 2017

I am from the uterine board but read lots of areas as pelvic rads after effects info was wanted. At 78, I probably have a different view than the younger folk. I had BC in 1997 - stage 3 w/ 20 involved lymph nodes in left arm. Prognosis was grim, but took all the advice for the best chance. At 55, I was not ready to give up and to everyone's surprise, NED for 20 years. However, I had prepared to die and that changed everything - got all the paperwork needed to die and not leave children in a mess. Then I could live.  So, in 2017 when cancer came calling again, it was easy to get my ducks in a row as had never not had all legal things done. BUT, now have UPSC, an aggressive cancer and have not been NED for 2 years. So, this time I am more interested in dying well than worrying about fighting. So, have had the "end of life" talk with my 3 wonderful adult children and my primary doctor. Knowing that they are all in agreement on how I want things to be, I am at peace. As far as humanly possible, I am ready as dealth has no fear for me. I have experienced death with parents and sibling, friends, and my wonderful dogs and horses. So, I take one day at a time. I laugh at myself at water aerobics as I wonder why I keep in shape with the sword of Damocles over my head. But, that is LIFE. I believe I have had a good life with more joy than hurt, and so far, have survived damn near everything. Just glad to see that others are not afraid to discuss death which we all know is the circle of life. Peace.

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

You story is a wonder, though I am sad that your Cancer came back after such a long time. 

You information motivates me to look into the finacial side of death.  I have purchased my plot, and informed my family that the cheapest casket possible, but notihng beyond that. 

I have also started clearing out. So much 'stuff' that the children do not need to go through. 

I wish you the best as you move forward with your new fight. 

Tru

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

I'm 48 and I'm with you Donna.  Being diagnosed at 42 changed my whole perception of life.  I really have an appreciation that I wouldn't have had if this hand't happened.  I also have a sometimes bitterness (it's a bit of a pity party at times) as my body is a wreck.  Amazingly I figured out that even with this mess of a body, I do more in a day than most people do in a week.  Who knew.  I just assumed everyone painted, plastered, sawed, drilled and worked on a tedious hobby like gardening.  Between the cancer and the realization that I have amazing skills, my confidence is crazy these days.  Of course life has a way of saying uh uh back down you go so I'm not getting arrogant about it. I have a lot of pain and that's just life now.   I accept death and when I'm in pain even wish for it, it's going to come one day.  Meanwhile while I'm not in pain I am thankful for life.  Even nights like tonight while I'm trapped on my bed because I have the runs and poop into a bag.  Just another challenging night in the life of a 40 something. I get to see my only daughter married and my grandson turned 6.  These are things 5 years ago I thought I wasn't going to have so poop in a bag, not that bad.   I like your spunk!  And I think being 78 and being at peace is awesome.

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PhillieG
Posts: 4884
Joined: May 2005

No, my views haven’t changed. I’m still dead set against dying! Wink

I’m in no hurry but barring any accidents I’m fairly certain cancer will take me out. I’ve gotten so many extra years out of life than I was originally told. Our boys were 10 & 4 when I was dx’d, now they’re 24 & 18. Pretty good deal!

 

 

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

the picture.

I'm dead set against dying as well. My goal is now 92, but I'm sure I will re-evaluate when I'm 90.

Keep on going, Phil. 

Tru

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

I just want to live as long as my quality of life is good. I do not want to hang on just because they can do it.

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Canadian Sandy
Posts: 459
Joined: Jul 2016

What a nice picture! 

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Our oldest, far right, is home from grad school in Arizona. We're in NYS. Our other son just graduated high school and will be off to college in the fall. I honestly never thought I'd live to see the day! I'm so thankful to my oncology team.

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PhillieG
Posts: 4884
Joined: May 2005

This topic may/will be controversial for some but hey, those who know me won't be surprised by this. I was listening to a podcast by Sam Harris from May of this year where he and the author Michael Pollen were discussing Michael Pollan's new book How to Change Your Mind. They cover the the resurgence of interest in psychedelics in clinical practice and end-of-life care, the “betterment of well people,” the relationship between thinking and mental suffering, the differences between psychedelics and meditation, the non-duality of consciousness, the brain’s “default mode network,” their experiences with various psychedelics, and other topics. I found it "highly" interesting and had actually expressed interest in participating in a clinical trial done by the Mayo Clinic that dealt with the use of "magic mushrooms" and cancer patients. I was turned down, possibly because I was too enthusiastic(?)...

They discussed was a patient who was terminally ill with zero chance of beating his cancer. He opted for this guided psilocybin trip where a therapist guides you through the experience. One of the purposes of this is to separate the ego from the id and can often give you a clearer understanding of who you are. A very strange thing happened to this man after he finished his experience. Other patients who were in the same hospice care center that he was in heard about him and started to visit his room just so they could be in his presence. The man was so at peace with himself even though he knew his death was inevitable.

I know the topic of psychedelic drugs is touchy based on the overuse by some kids in the 1960's. It was used to treat phycological conditions in the 1930's-40's and even used by the US military as a possible "truth serum" in the 1950's. There were many cases where people didn't know they were on a drug and participating in a test. Frankly, people were used as guinea pigs without their knowledge.

As a child of my generation (born in 1957) I did try LSD and mushrooms a few times. Fortunately, I never had a bad experience and the majority of my trips were enlightening for me. It was what I imagine a religious experience to be like. In fact, many people do or have used mushrooms or peyote as part of their religious/spiritual ceremonies. While I do not condone the use of these drugs, especially without the proper supervision, I do believe that they can serve a very important role in the care and well-being of people at certain times.
There's a link to the podcast in my post.

I hope everyone has an enjoyable weekend.
-phil

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beaumontdave
Posts: 936
Joined: Aug 2013

Perspective is a thing that we really get channeled into by life's bumps and nudges, and anything that can take you outside your narrow view in a controlled enviroment, can be a good thing. Born in '58, I was the rebel in my family, which means I tried most everything the 70's had to offer, and enjoyed most of it, with only a couple exceptions. I left that all behind until the wife and I were both diagnosed, then with a medical marijuana script, tried various levels of THC edibles, extracts, and lotions. Cindy seemed to get relief through some of the stuff, but I couldn't get comfortable with any level of THC product, and CBD stuff didn't really alieve pain in a significant way. Mushrooms were always a gentle brightening experience, it would be nice if they could establish whether it or the other psycho-active drugs had value in helping those with terminal diagnoses and the anxiety and depression that come along with it. Another drug[originally an anesthetic] is being looked at too, Ketamine which is a party drug for a certain set, is said to be getting a serious level study for it's ability to alleviate depression. I hope they find worth in some of these old compounds that can help. Like you, I don't recommend anyone follow the path I took, uncontrolled doses of corrupted, unsupervised lab work, stepped on with other unknown junk, and taken at an unknown dose, is a risky, foolish game. But there was something potentionally life-altering in some of that stuff, and I mean that in a good way. If they could isolate, control, and test some of what I remember feeling as effects, they'd maybe have a whole different approach to dealing with those suffering the most dire, grim circumstances and the mindsets that most inevitably adopt..........................................................................................Dave

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lizard44
Posts: 409
Joined: Apr 2015

That was interesting. I  was already a teenager (barely, thoughWink ) when you were born.  I  somehow missed the drug scene, so never tried  going on any trips. I can see where they may very well have a place in  some medical settings, particularly end-of-life treatment.

I've  always been a little hesitant to post my experience here, because it  differs from the experience of so many here and I feel a little guilty about that.  I never  felt the fear, anger or anxiety many have described upon being diagnosed  stage 4 and I don't recall my husband or children being   traumatized by  the diagnosis, either. That could be because I'm much older than so many here who were diagnosed at an early age, when  their lives were just getting into gear.    My dad died of lung cancer  at age 54  and my mother died of breast cancer at age 62, so in a way I was surprised to have made it to 70 without a  diagnosis and equally suprised  to  have  come though   APR surgery, a liver ablation,  8 rounds of Folfox plus Avastin, 28 rounds of 5-FUchemo-radiation and maintenance chemo of Erbitux and irinotecan every two weeks since  April of 2016;   just had another treatment  day before yesterday.  The cancer and the treatments are part of my life now, but they aren't my whole life and they don't define me.

As Cindy mentioned, I also tend to agree with the "be here now" philosophy from  Kate Bowler's book, although I don't approach it from the same religious perspective Bowler does. I know that the cancer will probably  kill me at some point, but I might also step off a curb one day and  be run over by a bus, although that's not very likely since we have  really lousy bus service here .  I do try to live every day to the fullest, do what I can, when I can,  and know that I can still buy green bananas because  even if I won't be around to   eat them when they ripen, somebody else will.

lizard44/Grace

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

Every experiece is important.  

Your response to treatment and mine, are almost opposites, and I bet folks want to hear your story over mine, any day. 

My admiration for you and for friend, Danker, is over the top. You are rightly called 'Grace'.

Tru

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chistyr1
Posts: 5
Joined: Jun 2018

Hi,

Honestly my dad is going through stage 4 colon cancer and i wonder that everyday. Its so hard to see the most hardworking and genuine person to go through cancer. HE has psychotic episodes when his chemotherapy is fresh. I have never seen my dad act the way that he does on this medication. I'm scared for our future and if he will ever genuinelly get "better". This is so hard on all of us. We are trying our best to be here for him. It's been 2 months and 2 chemo sessions.

-Rafia

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

I hope your dad has talked to his Oncologist about the psychotic episodes.  They need to know everything. 

Just being there for your dad, will be a great help. Just don't treat him like he's dying. Oh, I remember it being a fine line between hating that people thought I was dying and being seemingly unconcerned. HA! 

Tru

Tru

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