We all want to live but might it be better to just exit this life as gracefully as possible and leave behind all the pain and suffering…
When the cancer destroys qol - Advanced Prostate...
When the cancer destroys qol
Written by
rogerandme
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93 Replies
•
Used to feel that way but have had such an outpouring of love from the females in my life I realize that I am loved and needed in their lives. I am continuing my treatment and will continue to fight this battle for them regardless of the pain and mental anguish. "If you are going to fight for your life, find someone to fight for" I have found my someones
You are a lucky man except for the pca. I. Two have people in my life that make want to fight beginning with my 22 year old twin sons and my awesome girlfriend… I hope that I have the courage to fight on once qol starts to deteriorate… God help us all…
When my time comes, out I go... Life Is Good, but only when worth living.
QOL, When to choose non existence?If it was not for my 9 Year old daughter I think I would not be here. We all need a reason to go through this & she is mine.
I hope you are ok. Is your PCa not responding to treatment?Pain?
Suffering?
I am above ground. My eyes work, my ears work, my mouth works. I can think and dream (no more sex fantasies though, instead had to create new daydreams).
I am compromised and not who/what I was but I'm good enough to look forward to hopefully another day.
I’m ok right now looking to what future holds but should just be grateful things are going well for now… I know keeping a positive attitude is so important so time to just enjoy life now… and deal with future when it gets here…
So true. Thoughts of the end creep in from time to time so hard to keep positive when that happens. I am "riding a wave of no progression" now under Zytiga but I know it won't last forever and so try to enjoy the ride for now.
If you get depressed let your dr. know as it can be treated. The stage 4 diagnosis itself and the ADT itself can definitely contribute.
Someone on our forum once said "Geeez if you get a stage 4 cancer diagnosis a prescription for antidepressants should be automatic".
Agree about the prescription for depression needed but til I got over my depression did I realize that my doctors delivered the bad news like it was no big deal… I guess these see it everyday and they lose their compassion…
That's like the last procedure I had done. Dr said quick and easy, no sweat.. FOR HIM. For me pain was a continual reminder for a month.
I am a Christian who is in remission from Stage 4. I too take it one day at a time. God gives comfort, hope and strength just when we need it. I do not have a storehouse of faith and courage, but I know it will be there exactly when needed. Trusting in Christ has made my journey much easier.
I don't know if you've read Camus' essay "The Myth of Sisyphus."
www2.hawaii.edu/~freeman/co...
Camus faces the question of existential absurdity. Is suicide the best reaction to a meaningless and painful existence? He argues that an arduous life without meaning can still be worth enduring:
"I leave Sisyphus at the foot of the mountain! One always finds one's burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy."
Familiar with essay I’ll reread it… thanks for the link…
This is why my extensive collections of firearms are locked with my wife having the keys.
mrscruffy• in reply to
Totally understand, gave all my guns to a friend and she was required to give back after doctor cleared me. He did so but requires I keep them locked up. Apparently most self inflicted gunshots are done with gun on a table and the act of retrieving them often prevents them
• in reply tomrscruffy
Sad thing is I was raised in an environment where everyone carried a handgun,It was common place. I was given my first pistol a Springfield 45 when I was 12. guess what I was issued when I arrived in Vietnam?
I recommend Viktor Frankl's famous book, "Man's Search for Meaning" in which he recounts his experience losing his life's work along with his family during the holocaust. “Those who have a 'why' to live, can bear with almost any 'how'.”
It always amazes me when people rise to any ocassin and overcome so much adversity….there are worse things then dying and I think watching a lived die is right up there…
"I’m ok right now looking to what future holds..."
Don't do it!
If there is something specific you can do now that will improve the future, then do that of course.
The key to QOL is living in the present tense. It ends the same way more or less for all of us, no point in skipping to the end. Celebrate every moment and be fully present in it. That's what I've learned.
rogerandme• in reply to
I agree this diagnosis has taught me appreciate every moment… live in the present but every now and then my mind skips ahead… no bueno
rogerandme wrote --- "We all want to live but might it be better to just exit this life as gracefully as possible and leave behind all the pain and suffering…"
LONG before my PCa diagnosis I had multiple means to "Exit Stage Left." >>>
youtube.com/watch?v=Q3-a4qW...
My choice of treatment might very well cause a *premature exit* compared to had I gone with SOC, BUTT my QOL is of vital importance and my wife of 48 years AND kids are cognoscente of whence I come. My first viewing of "Soylent Green" cemented the thought that SOL had a great "Exit Stage Left." IMO, it's not about "putting up a good battle" or "soldiering till the end" or "Finally being at peace without pain" rather it is grasping the "Gold Ring on the Merry Go Round of Life" and to live life to the fullest of my remaining abilities and not just to exist in life --- even if it is killing me.
Agreed. I didn't pick the "safest" treatment either. QOL can't be undervalued for some of us.
• in reply toaddicted2cycling
“ Heavens to Mergatroid “!
• in reply torogerandme
I learned a very important lesson about this on my first visit with my Onologist.
I had just started treatment and wanted to discuss what we should do "down the road" I asked "So what do we do when that treatment fails" and "what do we do after that, etc." Eventually we got through all the treatments and she said "We'll have to find some comfort care for you." I remember the shock going through me, thinking in my mind "Oh my God, I'm going to end up in hospice!" I started crying and she tried to console me.
Then a couple minutes later I thought, "You idiot! Look at what you just did!" Big learning experience for me right there.
The main driver for me is extreme pain. When pain mounts then QOL suffers and alternatives seem more justified.
2Dee
• in reply to2dee
That's right. All of the basic physical needs of life must be met be first in order to have any kind of quality of life. I don't see the reason to be here if we are suffering with extreme pain.
May I ask where your pain is manifesting?
My DX in 2018. PSA 1303, metastasized to entire skeleton. Extreme pain for 6mos, lost 55#, all strength and stamina gone.Pain moved daily to a different body part as PCa chewed it's way around. Nausea, passed out, curled up on floor waiting for the next second to pass.
Finally DX stage 4 and not predicted to last through 2018.
Lupron after a few months reduced PSA to 1.2 and pain subsided a bit. Later added Xtandi, dropped after 15mos and now on Lynparza. (BRCA2 mutated).
Pain now much more tolerable.
I don't wish to experience the extreme bone pain again when treatments fail. Been there done that.
I'm 79 and hope something else gets me so I can bypass the metastatic pain in the end.
2Dee
Pain in shoulder and forearm not sure if it’s cancer or due to adt… psa 0.34 down from 0.83 so I guess adt is doing it’s job… but worrisothis pain came out of the blue no injury I can remember having new scans in two weeks hope for the best
• in reply torogerandme
Hey Roger! Joint and muscle pains with ADt are common for me . Osteopenia and djd set in on me . No t is the culprit . I just started a glucosamine chondroiten msm complex two months ago . The Joint pains have improved greatly! I too thought I was a goner back in 2015 . Keep rolling and love life !👏👍🥳
rogerandme• in reply to
Thanks for your insight
• in reply torogerandme
Thank you . I know exactly what you’re saying .. I can relate🌵
A good friend once said to me, “do not go with your head down, slumped over and drooling……instead,….slide in sideways on your skate board, flip it up and say, “whoa, want a great journey that was.” That is my mantra now.
MY SKATEBOARD(s) would be my bicycles. This morning after I posted my reply ^^^ I went out for a 22.22 mile ride. Left the house at 2:08AM and -----
AT 2:42AM I saw a FIREBALL drop from the sky!!!
THAT'S WHAT I CALL LIVING AND HAVING QOL!!!!!
• in reply toaddicted2cycling
U da man?🤙🏽🏋🏽♂️
Well done......you must live some place where there is no snow and the sun actually shines! Saw the fireball, eh...excellent. Lottery ticket next?? I'd go out on my bicycle but most days it would be a bit tricky plowing through mucho snow and slush on the roads and trying not to get covered in slush as a big mother truck hits the slush at the same time you're passing by. Generally, that causes humour failure. Anyway, keep up your riding and watching fireballs.
In 1986 I stuck it where the sun often shines, as in SW FL. in the move from NJ.👍👍
Ah yes, now I see why you can ride like the wind and watch fireballs. Good on ya.
• in reply toMGBman
Hell yah! MGB man . 🤙🏽🏋🏽♂️
All the best to you brother.... one can only play one ball at a time as they come. I know I.want to take my last breath as it comes. Go well dude.
This is such an important conversation to have. I’m so glad to see it on this website. Ultimately, the decision is extremely personal. But it’s such an important conversation to have!
There’s so many levels to QOL. Our experience was it took care of itself. We never considered early departure. I think the body decides plus when things got to that point guns and overt decisions aren’t necessary. There is always hospice that have ways if lightening the burden. We kept on till there was no more keeping on plus we didn’t even have to try every drug or any we didn’t want.
He got 14 stage 4 years. Was published, won vintage car awards, wrote as a music enthusiast. Saw his grand kids grow and graduate.
It’s usually I’d say the pain that becomes the decider. It became that for us but that tasty cup of coffee to wake up to lasted to almost the end. We were sorry for nothing and gifted mightily, it also becomes a head strategy.
I read this and it meant a lot. The word soul is used but can be substituted.
The soul know it’s destiny. Trust it.
You’ve received some great experience on this one. Take heed! From what I understand, you’re doing well today, but worried about what the future will bring.
All my life, from time to time I’ve had thoughts of a possible future process or event that filled me with dread, terror, worry, despair etc.
Eventually I realized that no difficult or painful present moment has ever come close to being as bad as I imagined. That’s when I stopped entertaining those type of thoughts.
Like everything challenging worth doing, this takes practice. But there is literally nothing better!
Take some comfort from the peeps on this site. A lot knowledge here you won't get from others. Sounds to me you are on a positive track.🇦🇺
In Canada we now have a formal system in place for Medical Assistance In Dying.
I will fill out the paperwork for this, I will not be trying to extend my suffering to the max.
I saw my father die from the same cancer that I have. I lived with him for 6 months up unto the end. It is a gruesome way to go and I will stay as long as my loved ones want me to. Here in the states we don't have Medically assisted suicide, I have a dear friend that will end it for me when the agreed upon time is right. He is a God send and will carry out my orders without hesitation. Thank God for loving friends
• in reply tomrscruffy
I discussed this topic with my VA doctor and although the VA does not have Death with Dignity because it's a federal agency, my state of California does. He said he does not see very many prostate cancer patients using it (good sign). He said it's more common with certain other diseases like ALS and dementia.
I support the idea. For those in US states and countries that don't have it, if you can make it to Switzerland, there is an organization called Pegasos that takes care of everything.
My opinion is it's patient's choice to end their suffering. We don't make our dogs and cats suffer when there is nothing we can do for them, so why should humans? I also don't see it as suicide, in fact if you follow the provisions of the Death with Dignity Act here in California, the cause of death is listed as whatever disease you have, not suicide.
rogerandme• in reply to
I am here in California must have slipped my mind about die with dignity law thanks for reminding me
• in reply torogerandme
One of the events that pushed the passage of it was a woman who had some kind of incurable brain tumor that was making her suffer badly. She had to move to Oregon because California didn't have it at the time.
Here's the details.
rogerandme• in reply to
My urologist whom I no longer see always brought up negative stuff… when I asked about dying with dignity he said yeah but that’s way down the line you’re going to go through a lot of suffering and pain before you will be eligible… I thought thanks a lot jerk then he asked when do you want to see me again to which… no thanks I’m done with you and walked out…
• in reply torogerandme
Sounds like a jerk, glad you aren't seeing him any more.
But there are things to consider regarding eligibility. You have to be within 6 months of death as determined by 2 doctors. And I think the process takes at least a month so there is kind of small window there.
Also have to make sure your provider will do it, some do and some don't. I know 2 big ones, Sutter and Kaiser support it. The good thing is you get your prescription, and it's up to you if you use it and when. Actually most people end up not using it. I could see getting piece of mind knowing it's on the shelf and knowing if things get really bad, I'm only 15 minutes away from relief.
I always keep Pegasos, (Swiss organization) in my "back pocket" in case. You don't have show anything signed off by doctors, just fairly minimal things. Of course you have to able to get there and pay around 10K, but it might be a good option depending on the situation.
rogerandme• in reply to
Thanks for the info hopefully I’m a longs ways from that moment one day at a time…
• in reply torogerandme
It is something you do have to think about ahead of time. You don't have to plan really far ahead, but definitely don't want to start thinking about it when things have already gotten bad with suffering.
I'm figuring when I'm out of treatments and hear "there's nothing more we can do for you" from at least 2 doctors, that's when I start looking into starting the process.
As Barney Fife said about the one bullet he was allowed to carry: "Better to have it and not need it, than need it and not have it."
• in reply torogerandme
My uro told me as he inserted gold makers into my prostate ” I never promised you rainbows or butterflies”! No sugar coating it .
• in reply toCSHobie
There is a point at which we all will submit . Until then let’s rock and rock . Even if it’s in second gear .
I'd try to balance the natural fear of a PCa death and loss of QOL with the fact that something else might well get us first anyway?
• in reply tomaley2711
At home out for yellow cabs! 😳
A very brave question to ask as you can see by the variety of responses you have received. Along with my strong family’s support, I recently decided to go the hospice route. All I wanted to do was get the excruciating pain in my pelvic and spine under control. My scans showed cancer heavy throughout those areas. A bonus would be if I could occasionally get out of bed walk outside and enjoy a nice ice tea on the back porch. Success in both areas and rather rapid as well. Hospice has allowed us to stay ahead of the pain but it hasn’t stopped the inevitability of dying from stage 4 PCa. It’s been eleven weeks on hospice and there have been some breakthrough blessings that far outweigh the negative QOL issues I could have avoided had I decided not to try hospice. I am trying to be consist in recording my hospice journey each Friday on this site. Nothing profound, simply some observations of changes in my life while on hospice as compared to the previous week. I’d urge you to read throw those posts as well as the well thought out responses from our brothers and sisters in this battle.
Thank you for your weekly updates.
I have been following your brave posts which prompted me to ask the qol question… but I do understand that it is a personal journey for each of us and we must all deal with it individually. Thank you posting even though for me they are difficult to read… I still appreciate them… wishing you the best….🙏🙏🙏
It not all just about prostate cancer though. At least, for me it isn't. At age 75, I now find I have problems with my heart, kidneys and gall bladder as well. (Just because I'm paranoid, doesn't mean they're not out to get me.) That was a joke by the way. My PSA is slowly rising but maybe that might now be the least of my troubles. I firmly believe "It is what it is" and just carry on doing the best I can. However, when the QOL goes, then it is time to let go and take away the pain from yourself as well as all those you love. I am sure we would all settle for a quick and painless death but, in many cases, Pca does not give you that. Assisted dying would seem to be a good option where it is available, but I fully accept that would be against the beliefs of many on here. However, when it comes down to it, I believe we should all have the right to determine how we exit this world.
Rogerandme, Thank you for bringing up this subject of Quality of Life. After all what is life without quality and purpose. I found mine with a closer relationship with spouse, books, fitness and faith.
After consultation at the Scoop Jackson Prostrate Cancer Center at Walter Reed Medical Center in 2008, I participated in their QOL survey for three years. No mental support form my, primary care, urologist, or oncologist. Medically retired from the service with PTSD QOL support was and is important, as it should be for all cancer patients.
Seek out those demons of pain, and disinformation... and slay them with knowledge, fitness and your relationship with our Creator.
Grace be with you,
PeteL.
Thanks for asking this question and causing the discussion that followed. I think we all wonder at times if it's worth continuing. We need to count our blessing and look at people around us. But it's a question we will all face.
Each of us have to answer the question, what is the definition of QOL? Is it a sexual act? Is it being able to do at 65 what I used to do at 55? How do we each measure that? I do not want to go on in this life in a vegetative state or in constant pain. However, I have found an answer to all of my afflictions thus far: My answer is LOVE. The love of my wife, my children, my friends and most of all the love that I feel from my Lord above. (I realize others are not going to have the same beliefs or relationships that I do. But these are my reasons for getting past the night sweats, the lack of libido that used to be a central part of my being, the aches and pains. Up to now they have all been offset by the Loves in my life.) I also find a good workout, a good meal, a funny story, a brisk walk, giving to / serving others in need helps to keep my mind on the important things in this life.
I send all of my best wishes to you.
• in reply toQuick2019
Quick2019 , you’ve nailed on the head ! Love baby! 🙏👏👏👏🏋🏽♂️
Well , I decided when I got the long face that I was not going to change my way of life. I eat what I want ,I do what I want and I plan ahead for all those things I want to get done. Most importantly I have taken the time to draw my family closer to me and love them unconditionally ❤️❤️
• in reply tolarry_dammit
Hey Larry! Dammit! What did the bartender say to the horse that walked into the bar?…. “ Why the long face”? I changed everything that I consume.. Mr natural working on six years now. 🏋🏽♂️👏👏👏🥳
larry_dammit• in reply to
Well I did cut red meat out of my diet and alcohol so did change a little. 🤪🤪
• in reply tolarry_dammit
Me too! Those are the two big ones , great job . I cheat on the meat once in awhile . Had some organic New Zealand lamb the other day to die for ..mmm . I once self toured Europe with for an art tour and holding a Michelin guide . Some of the best in the world . Unreal . All that fois gras and butter is good . They drink lots of wine .
Thank you for raising this. As the wife of a stage 4, nil treatments left, wonderful human, I have read all your responses. Gained a lot of insight from honest good men.
Here’s to QOL, whatever that means to all of you 🥂
Watched the movie “Supernova” with my wife, Johane, on Netflix last evening. Since I have been on Supra testosterone cycling for a few months my body has restored to a previous condition of strength, lean muscled, and enthusiastically capable in every area. I have been feeling so good and planning great challenging adventures such as backpacking with her in high mountains and multi week motorcycle camping in 2022. We were hiking a steep training hill here in Cabo at dawn. I asked her thoughts on this very question. How many months of feeling diminished on cancer treatments, that prolong life at the expense of diminished capacity and QOL, are worth trading for fewer months of life while being and living as I have all of my previous life? Given that the end will be the same inevitably? What would be my personal equation of excellent months traded for fewer months?No I do not have even my own answer yet and expect it will change as my PC advances. That movie, Supernova, about a long term loving couple (gay), one nearing end stage Alzheimer’s. It leads to very poignant discussions about early exit when faced with irreversible decline near the end of life’s journey. And letting go of loved ones who have shared that journey.
• in reply toMateoBeach
Paz Amigo in Los Cabos!🕊✌️🥂Salud,
MateoBeach• in reply to
Gracias and abrazos amigo. Feliz Navidad
• in reply toMateoBeach
Feliz ano ! 🥳🥳🕺🕺🕺🌵
Thank you too all that have posted. I struggle from time to time with the what ifs. My wife and family as well as my four legged kids get me through.
my bottom line (no pun intended) for intolerable qol is two-fold: constant pain the even the opioids can't control and total incontinence. sex is a bad joke but much of life is also. lucky for me i have a rich imagination. i don't need anyone else to live for... i live for me! also lucky i have a God of my own understanding who'll let me know when he's ready for me. Would really be ironic if you checked out a week before the researchers found a universal cure for all this crap 😜
What??? And give up my Hess toy truck collection?
*** Click on Watch on YouTube ***
youtube.com/watch?v=QmZDAoy...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 12/14/2021 10:57 PM EST
This is a very Important question and different for everyone. Some will panic and want to do everything in the book to fight their cancer and others will take an objectionable approach. I have seen both in my life. I took care of my wife’s cousin the 17 months he lived with stage 4 cancer, worried, was extremely paranoid of dying asking for any and all medications and put his wife and family in the poor house,To live only 17 months, and yes I changed his diapers because his wife could not. As you know cancer treatment is ridiculously expensive. And I think to determine at what stage you are at. I believe stage 1, maybe 2 when is localized some aggressive treatments are good. But at stage 4b where I am at, Its a battle that your not going to win. At this stage your cancer can only be slowed down. Statistics are only a few percent make it 5 years in stage4B. My believe is to do the treatments that are affordable and effective without breaking the bank. I believe we need to do this with little pain ( even though we go Thru some) however like I told my wife if I get down and in bed shooting up pain meds and when the Paralysis comes, I am done PERIOD. The fact is we are all going to die, some kicking and screaming some peacefully but we all will die. I think if I cannot live a productive life with my wife and family then what good is life. Do I believe in suicide, NO but at one point I know I will need to let the disease take it’s final toll, that is our choice. It will be different for everyone. Like I tell my doctors I am not afraid to die I just do not want to suffer,
Or my family to suffer. We also have to think of our loved ones, they fight for us but they suffer from anxiety and depression on what we are going Thru too. So at what point is enough? I love my wife but I don’t want her to have to go broke because of me, I don’t want her to have to change a grown man’s diapers and I don’t want her to have to look at me in bed everyday sleeping because of the amount of meds. This for me is the tipping point and QOL to me is better over quantity OL. This is reality. I think we as cancer patients have to get a grasp on our condition lift up our heads and move forward to what life has in store for us and do this helping, loving our wife’s, our families and friends along the way and remember they are suffering from this too. And when the time comes let it go and prepare for the next chapter of our lives in Heaven. Some will luckily enough pass in their sleep. Personally I think the doctors try to keep us alive too long, the longer it goes the worse the end comes, I think. Eventually we will go it’s just what do we want to put our family’s Thru and what good it will do with the amount of time determined is the question. I have heard a lot of spouses say….he won his battle by passing on and what a bad feeling it was for them but also what a good feeling it was knowing they are not in pain anymore and they are not fighting PC anymore.I think the spouses are relieved to a point too because of all the months or years of watching their loved ones suffer this terrible disease. So again QOL means everything to me and I believe it means everything to our loved ones supporting us .I think alot of people are selfish and run up bills to keep themselves alive for 4 more months, in bed suffering from pain and cannot eat and have no good quality while yet living, to me it’s what’s the point in that, if it’s not quality time with my wife or loved ones it’s useless. Anyrate it’s different for everyone but for me it’s about living a happy and productive life with the people that is also effected along with me and to answer the question,
will it deliver more good times or is it a means to the end. I think you have to stop being depressed, sobbing over yourself, do your research, be honest with yourself, talk to multiple doctors that will give you the straight results and make the decisions together with your doctors. Blessings to all and my prayers go out to everyone fighting PC as I am in stage4b and living a happy life with no regrets. God bless.
Tommyemily• in reply to
I find it incredibly sad that people may be required to choose between extending their lives and having their loved ones go broke and am totally grateful for living in a country where such decisions are not required. The health system in Israel will even grant up to USD 250,000 to cover the rare occasion when a life saving procedure is not available in Israel.
en.wikipedia.org/wiki/Healt...
• in reply toTommyemily
Tommyemiky, I am glad your blessed. It’s not like that here in the US. I had to make that choice already at stage4B. The US pays 3-4 times more for healthcare and drugs than any other richer countries even when the drugs are made here in the US. The US people have always been exploited, but it’s ok because our Heavenly Father still loves us and being with him is everything. Thanks for your post, be blessed.
Tommyemily• in reply to
May your believe sustain and uplift you.
• in reply toTommyemily
Thank you Tommyemily, one step at a time and one day at a time. Its how I roll.
Sometimes I wish I had not moved back to the U.S. from Japan in 1980.If you are diagnosed with a serious disease ( Lupus for example ) or stage 4 cancer you automatically do not pay for health care and you are also given a monthly payment to help you live life.
Our medical system is in dire need of a complete makeover… Medicare is a mess and life saving drugs are very expensive… xtandi is 12,500 a month… ridiculous…..
• in reply torogerandme
The one thing I love about Xtandi they do have several programs to make their drugs more affordable, you just have to get the form or have your doctors pull it down from web, you sign and get your doctors to sign the paperwork and then it’s either discounted or free depending on your income. Thank You Xtandi. But all the manufacturers do not do that because they are wrapped in major profits.
I lift my eye lidsAnd see light...
Another night has passed...
I went to sleep hoping that it would be my last
But not to be not up to me...yet..
i muster the will
Ingest the pills
Place my feet on the floor...say to myself i can make it one more
Day ....
• in reply toBoywonder56
Sounds like ground hog day!
• in reply toBoywonder56
AMEN ! Well put.
You're a great poet
In case you don't know it
Keep up the good work
Don't let darkness lurk
Fight the good fight
Always seek the Light
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