My husband has been fighting Stage IV PCa for almost 4 years now. In this time he has gone through castration, 50 rounds of radiation (various areas), multiple chemotherapy (Taxotere, Xtandi, Radium 223, Jevtana and now back on Taxotere again. Except for the first round of Taxotere, when he was at his strongest, he has been unable to finish any one of these therapies due to intolerance or ineffectiveness against his cancer progression. For the past 3 months he has been hospitalized 3 times for pain control. He has been bedridden and hardly able to get back and forth from the bathroom due to weakness. He is currently on morphine and fentanyl patch for his pain control, zofran for his nausea from the morphine and of course the much needed laxatives from taking narcotics. His PSA continues to climb and his scans continue to show growth/progression of his disease. He is finding it more and more difficult to figure out "why" he's doing this and wonders when to stop the madness of it all. I realize this is a positive site for people, but with his Onco continuing to want to give him chemo that he can't tolerate, we don't know what to do or who to turn to. How do you admit to yourself that quality is more important than quantity?? I realize that the ones to answer this question are the ones who have made this decision, hoping to get some nuggets! God Bless.
When Is Enough Enough???: My husband... - Advanced Prostate...
When Is Enough Enough???
- Cancer and tumours
- Morphine
- Chemotherapy
- PSA
- Fentanyl
- Castration
- Laxatives
- Xtandi
- Taxotere
- Zofran
- Jevtana
- Radium 223
My mother made the decision to stop further chemo for her uterine cancer, and I supported her on this. It was debilitating, yet provided no symptomatic relief and very little expected extra life. With prostate cancer, many of the therapies that extend life (chemo, hormonal, radiopharmaceuticals) are also the ones that afford the best pain palliation, so the decision is more complicated. One or two zaps of external beam radiation to bone mets may provide pain relief, prevent fractures and spinal compression without extending life. My heart goes out to you as you struggle with this difficult decision.
As an advanced prostate cancer diagnosis, with initial PSA 1000+ and extensive metastasis, I'm close to your husband's plight, my life is in flux, the mind is overwhelmed to live life.
No one here can answer your question, your husband is the only one to consider, consult him, listen to him, focus on his way of life now, please do the best for him, whatever the outcome...
Praying the best on your journey!!
My daughters and I will pray for guidance for you and your husband. So many beautiful souls on here fighting the good fight but still take their cherished time to reach out to us scared and feeling alone caretakers. Our husbands fight the disease and we fight for their rights of dignity, and the best care out there. We are in this together, somebody said on this very site, you will know when enough is enough. But I would do anything for my husband to get rid of the pain. Much compassion to you both.
Kim , Mel’s wife
Thank you Kim! I think the pain he sees in my eyes hurts him more than any cancer does!
Same here but just be a good actress more days than not because even on his worse days until he lets you know otherwise, he’s here, his soul his , his heart is ❤️ God gives us time for a reason . 🙏 You will remains in our prayers.
I can attest to that. My husband fought till the end for me. He never said that, but I knew. I remember how he looked at me when he signed the DNR and I started to cry. It was almost a look of "i'm so sorry to hurt you this way". I supported his decision either way- still doesn't make it easier. My only solace is knowing , that he was saved and is with crust in Heaven. Looking forward to the day we will be together again.
I know that feeling far too well...he never told me he was done. He didn’t have to. The look in his eyes was enough. But he made sure our closest friends knew so they could help me prepare. And I so thank him for that...
❤️Sheri
Hug those girls...
Well said Gatorman….If I had it to do over again I would have no treatment. All the treatments do is make the cancer way more aggressive and ruin your life. When a guy is first diagnosed the reaction is to get it out...the RP(which ruins your life) fails then salvage radiation which fails then a series of powerful poisons that fail one after the other leading to the holy grail for the drug companies crMPCa. The alternative is let the PCa run its course and go out in a blaze of glory by drinking a quart of GatorBlood and wrestling our old friend Gustave.
Gus
dinosoria.com/reptiles/croc...
Your comments and those of Nalakrats are exactly my opinion. QOL and being convinced that who knows how many years of surgeries, radiation’s, chemicals, were not likely to have a promising effect on the inevitable. Either my genes were going to be my salvation or if i had drawn the short straw, all the Kings men in the medical world would change nothing except to give years of a lousy QOL.
When diagnosed with a G9 13 years ago, after a few months of research, I decided to not treat this disease until I saw the whites of its eyes.
I have had 12 great years with no compromises to my life except for the time seeing my Doctors and participating in a number of scans and other sundry related activities. If not got one of these scans I would never had found an early diagnoses of lung cancer which fortunately was successfully surgically treated 7 years ago. I have often remarked that this PCa saved my life.
I have also made quite a number of friends in support groups,,,I attend regularly,,,and in online activities.
I like everyone despise this disease,,,but in a somewhat morbid way I do not regret it either.
I have no idea what I will do if and when this disease takes me tonthe edge,,,,,however if my past history is any guide...........I do know that a DNR will be part of my final curtain if it should come to that. That’s a call that each victim can only make them self.
If anyone still has doubts regarding the overwhelming non success that we have seen in 4,000 years of attempts to control and cure cancers,,,,I recommend again reading of one of my most favorite books; The Emperor of all Maladies, or watch the 3 part PBS Ken Burns documentary based upon the book.
I am often reminded of the old Frank Sinatra song,,,,I did it my way.....
I understand your plight, having gone through battles similar to yours and losing my soulmate on Nov 25, 2018. I wish now we had stopped treatment other than pain control for that last 3 months he lived and used whatever time we had left to be at home with each other, talking about our life together, and even discussing plans for my life afterwards. This would have been a better good-bye than spending all of our energy, time, and resources on the futile battle to survive as he continued downhill. Thankfully, a merciful God intervened and took him before it went on much longer. I know that some poor souls languish in this terrible state for a prolonged time. May God guide you in finding His will for you and your loved one and bless you in your decision.
end it my dear. whats the point of taking all this crap when the out come down the road if nothing else will kill. there is a point when the pain and lots of side effects is worth it. let him have pain meds and live out his life comfortable.
charlie
His way of “ending it” and my way are not parrallel. He looks at more of a quick exit, and that’s not ok with me.
Why not? I will listen to my lovely brother who is dealing with what w think will be the last months, numerous chemo and on one right now as a last hoora, then i think we both will talk that enough is enough and why extend those few month on morphine doped up and still in pain, i am behind his wanting a quick escape, he sufferedlong enough, and its not the pain alone, its what going on in one head...no i love him too much to want him to do that last agony trip slowly...i will be with him when we call it enough, have signed for euthanesia....be strong ...
Believe me, wish Dying with Dignity was legal in MO.......but it is not......yet! I know this is what we would do if available. I just don’t want to come home from work and be “surprised”.
Ahhh yes i am sorry, i understand, no i wouldnt want that either, but together can u not find a solution, my brother lives in the netherlands...its not even easy to get approval there. But i do not understand why, because my parents both really died a certain way of euthanesia, they got morphine and their meds were stopped and a day later they died...wich in my opionon is worse to starve a person to death..evn under morphine....we are not yet where u are..we were diagnosed a year ago, the oncologist didnt think it was this aggressive, she put him on low dose chemo and chem castration and more...but now all is back and chem catration doesnt work anymore etc. bones are very painful, no organs affected yet. He has morphine patch and will get dna test if still ok for immuun therapie. Chemo is one of the latest and he is coping with that ....will see after 3 cures if continue the full s6. I wish you strenght, he is so lucky to have you as his nurse....my brother is alone, with cousins who are wonderful, but dont live in...and you know yourself, not good to be by yourself with death thoughts....i wished there was a group to talk more about the ending..and how people cope, this forum is too up beat with very strong people, i want to hear from people negative thoughts too....sorry became so long..keep me posted...love Cosette
Cosette, you are wonderful. Correct we all need to need with the truth of our fragile existence here. This is a test to beat all. Not only for the inflicted but also for anyone caring for us. Death is a peaceful end to pain . And at some point we all will welcome it’s grip on us.
Cosette, I’m sorry, I just read this....such an overwhelming response, I just overlooked it! I am so sorry for what your brother is going through. By all the responses here, it’s obvious that people need this outlet too, and this forum offers so much love and support along with the infinity of knowledge found here! Feel free to talk with me anytime you need to. You can message me if you’d rather it not be on the board....we all need shoulders and hugs! 🙏🏻 for you and your family!
Thanks. I am going to see him in about a week. His doctor said extremely fast growing type. But she still ok his wish for chemo, they r trying 3 sessions and then test him, if no difference they will stop. He also is going to see an immunologist in Radboud Hospital and maybe he still qualifies for immunology treatment. After that who knows. His hip and lower back are the worst and he had some radiation, but he still walks unaided. Eats well. But inside the cancer is spreading...and his head is not a happy place.. confliting with , lets do more and giving up. Will keep you posted when i see him, when i need a shoulder to cry...please do the same.
His head is in the same place my husbands head is! We’ll hold hands through this journey! Hugs!
Nothin is legal in MO. I believe that we should each receive a Sianide secret ring to be used at will for all # 4 participants. Insurance should provide it to each of us.. no charge. This would save hundreds of years suffering and billions $$ that could be used instead on research.....
Rent the Canadian movie: The Barbarian Invasions (bizarre name), about a son who is dealing with his father's terminal illness. It includes a request to "end it" quickly. I think if you and your husband watch this film together, you may well come to a "parallel" view. amazon.com/Barbarian-Invasi...
We all wish for a quick exit when it’s our time.. Peace .
My husband Jozef was diagnosed with multiple METS to the bones in June 2013 PSA 100 PSA doubling every month if we did not add anything
He died July 2018 His red cell and platelets count were crashing ..that in my humble opinion started after the radiation of multiple spots in his back for pain relief from bone METS
We never chose chemo all our decisions were about QOL
I feel for your plight
this about pain
Pain control became a big thing some of the times
DMSO HAS BEEN A GREAT HELP .
I bought the 70 % gel from Biovea
biovea.net/au/product_detai...
I rubbed his back all the time ( works for about 4 hours...sometimes much longer ) and it dissolved the osteo lumps on my right hand that did the rubbing
I added frankincense and oregano oil ..For the anti inflammatory action and the nice smell
(Read up on the oils ..they are not all the same quality )
When the pain was stronger I would add 10 ground up Endones to a tub and rub it in
Local pain relief without the intestinal issues of the opiod
Jozef also had a badly slipped disk and this kept him all right throughout
MAGNESIUM
ancient-minerals.com/produc...
I found it was great to relax the muscles ..a lot of pain has a muscle spasm component
If the DMSO was not working well enough... I would add the magnesium.on top .Not vice versa ..as the DMSO has to applied to CLEAN skin
So I washed his back every day
PALMITOYLETHANOLAMIDE
Look into palmitoylethanolamide for pain ( the nerve component )..Not a gimmick
neuropathie.nu/treatment/pa...
This is used a lot in the Netherlands normally referred to as PEA PURE
You can buy it from the compounding lab in Albion
Jozef took it for years
Dear sister, my heart goes out to you. Yours is the question that lies at the back of my mind and in my stomach at all times and I fear having to answer. My prayer for you and your husband, for myself and my beloved Rob and for all on this sight is that the Lord will be exceeding close giving strength and courage, discernment and direction and comfort and reassurance and precious blessings of mercy and grace. Warm, tender hugs~Barbara
Thank you Barb. I realize this site is for uplifting and cheerleading, but I’ve already been down that road, we all will eventually come to this crossing and I feel that it’s healing to talk honetly and openly. Good luck to you and Rob.....Tender, gentle hugs.
This site is for all kinds of support, not just cheerleading; I personally am glad you asked the question (although sorry you are having to ask it), and that so many have generously responded. At a certain point, all of us (the men with Stage IV PCa and those who love them) will have to face this question, unless for some reason something else takes our men before the PCa does. It is so much better to have a loving and compassionate Q/A on how we can all face this. Thank you so much for asking the question. You are generous to all of us by sharing what you are going through and your courage makes a difference to us (certainly to me). Much love to you and your husband and family.
Now there you go......I’m crying! LOL!! Thanks for the loving responses!!
I've been crying at all the responses too! Hugs.
Me too, and I'm a man who is still living a somewhat normal life. But as has been said, I am more concerned about my wife than myself. At the end there is a release for me. She has to pick up the pieces after 40 years together and go on, likely for decades.
Exactly what my husband says to me. He says “I’ve got the easy part, you have to watch me deterorate and live on after I’m gone”. The best thing he has done is to get “things in order” WITH me. There is so much around the house that he always took care of that I need to learn, and I’ve had to beg him to show/teach me these things. I think it makes him feel better too, knowing he’s prepared me the best he can.
I did comprehensive financial planning for a living and I compliment your husband. My wife had difficulty dealing with this but is gradually coming to terms. Luckily she will be financially set and she's going to my protege's client. We've started to declutter the house and made other provisions because it's time regardless. I can't do much about the emotional issues except try to make as many good memories as possible and treat her like a queen. And letting her know, through a number of different ways, that I love here very deeply. When I was first diagnosed I was glad it was me instead of her. Now I think I was wrong.
Hi Jholmq, so glad that you were able to provide well for the future. Wish we were more financially stable as I’ve had to continue to work throughout this process leaving my husband at home alone and in his pain. My husband was a contractor and has started selling off his tools.....a very difficult thing as it made his prognosis more surreal. But he knew I wouldn’t know what half the stuff was, much less what it was worth, so he wanted to take care of it for me. Continue to love each other, love your life and love in general!!! Love makes all things better! (I sound like a hippie now). LOL
I feel your pain. I always tell my family that "we all have our time". Meaning we all pass on. I plan to do Morphine or any other pain meds that will let me go smoothly and not linger in pain or watch the sadness in my families eyes as I suffer. Sending prayers to you and your family.
My heart aches for your family. My husband and I face this delima ourselves. We opted to have pallative care come in while we see if the oncologist decides if there are any treatments that can slow the monster. I'd see if there is a hospice bridge program in your area to give you some support in making this decision. You will be in my prayers.
Thank you Grace331. I actually did pull pallative care in a few months ago.....kinda a joke here (of course I’m a nurse and probably more critical). But I feel it might help him transition into hospice care when he’s ready. Too often hospice isn’t utilized soon enough to help the patient and the family.......it’s such a good resource!
So very sorry to hear the monster has gone rogue on your loved one. Only you and the lord will know when it’s time to say it’s enough. 🙏🙏🙏🙏
Unfortunately no one can tell your husband that. It's a very personal choice. He will know when it's time. I just recently lost my husband Dec 29th. When he was hospitalized in October for pneumonia he denied a DNR order. Just 5 weeks later when he was hospitalized again, he signed the DNR order. It broke my heart cause I knew he had had enough (i supported him 100% either way, as this was his body) Although he completed one more round of chemo after signing the order. That was his first step to admit to himself, he'd had enough. All you can do is support him in his decision and love him to the end. 💕
So sorry for your recent loss Godschild62. My husband does sign a DNR with each admission...if the good Lord is ready to take him, he’s ready to go.....his Onco Dr was upset with him for this decision (have no idea why, I’m sure if her husband was sitting in his same boat she’d suggest DNR). DNR does not mean “No Care” it only means you don’t want to be rescuscitated in the event your heart stops. Having taken so much treatment his bones are brittle, and compressions would be more cruel than the cancer itself.
My heart goes out to you and your husband. My take is a little different than those replies above, I know it will be hard for me when the decision for enough comes to me. Four years with Stage IV is been a great great fight, and hopefully you have been blessed and will continued to be blessed with every day from here on. I don't know about the protocal about adding another treatment, but I did not see Zytiga on there It has worked for me for 4 year plus now undetectable. Did the ONC say if he might qualify for Keytruda?
Just keep the faith that pain will subside and you two are on the same page, bless you both for sharing your Journey
Zytiga has been mentioned, but she wanted to do a 2nd round on the Taxatere while he could still tolerate it (which he couldn’t). I won’t be surprised if this isn’t what she suggestes on our next appt on the 12th of this month, but our crossroad is here and not sure which path we want to take.
If your husband had Xtandi, given all of the other treatments he has had, Zytiga will do nothing for him. I find it difficult to believe that given his treatment history and progression regardless, that his physician has not had a serious end-of-life/hospice discussion with him. (Such discussions are now reimbursable by Medicare.) If he goes on hospice, he can still choose to exit more quickly if that's what he wants, without the mandatory police involvement and an autopsy. Yes - mandatory. Please see the information at this website: kraftsussman.com/when-death...
And the alternative: casahospice.com/hospice-car...
From my reading, that’s what I thought too, Xtandi was stronger than Zytiga. Xtandi did work though...brought his PSA down nicely, you can see the graft I posted some time back on this site, he just couldn’t tolerate the drug side effects. Maybe the Zytiga, with less side effects will also be effective and more tolerated. Not wanting to sound too hopeful.....but he deserves this chance.......if he wants to take it. That being said though, he is unable to do much of anything now....he’s in such a weakened state. Not sure he’s able to tolerate any chemo at this point.
This one has had many responses, so not much more to add, except that I hope that at some point in time, we set up separate sections on this site, so that we can handle this type of issue, as it is extremely important, and in far too many cases, is swept under the carpet. Most often, the patient survives in late stage due to those around him, who for numerous reasons-including many close to the heart, try to keep the poor guy going. Each man and his family have to make this decision at some point, never easy, but the fact is, the end is coming, there is little to do but prolong the end, and suffering to the bitter end, as they say, is not easy.
I definitely feel your pain as we are in the same situation. My dear daddy was diagnosed in October 2016 with aggressive PC and mets to liver and both lungs. His MO at the time recommended chemo and told us we may have 6 months with him. He has fought so hard the last two years through chemo/side effects and horrible side effects from Zytiga which resulted in falls and the inability to walk for the last year. He has just come through a severe UTI and has told my mom several times that he has no quality of life and just lays and prays for Jesus to come and take him. It is so heartbreaking to see him lose weight so drastically and become so frail as he has always been so strong and active right up until his diagnosis. Prayers to you and your husband and all those in this situation from this horrible monster.
Prayers to you and your family.......it is so nice to talk honestly about all of this....I don’t want something or someones wisdom to come up AFTER he’s gone.....I’d rather discuss this now as there may be more I can do to make his journey (whichever way he decides to go) easier on him and/or me.
The combination of pain , bedridden, and no real likelihood of not being bedridden and in pain would cause me to discontinue treatments.
This is heartbreaking! He should follow an alternative course of action! Find another Onco immediately!
Nalakrats....always enjoy your comments, you are very wise and knowledgable on this topic. I did get him some THC a couple of weeks ago......didn’t help his pain...but really helped curve his anxiety (as well as stink up the house). LOL
Wouldn’t another Onco only do the same things?? I don’t blame the Onco (other than not understanding DNR). It would be nice if she’d have this serious talk with him instead of only discussing treatments. His cancer has never been curable, pretty wide spread on diagnosis.
compassionandchoices.org/en...
Fight hard for life, and when the day is done, leave with what grace you can.
Nalakrats Is there any chance of having a one on one talking with you? I'm going on 7 years. Lupron and Xtandi have been the treatments. I did a lot of supplements before going into a clinical trial at NIH. I've read many of your blogs both here and other sites. I am doing well physically , according to my doctors , but the quality of my life is poor. I need to fire a doctor too. He doesn't meet my needs. You may not have the time , which I can understand. I have to make some changes.
I really have no wisdom to offer, as our journey has not reached that stage. What I can offer is prayers of comfort and peace for you both, and prayers that you know your support and love mean everything to him. As my grandfather said often in the final days of his own cancer fight, "there are far worse things than death, especially if you know your next destination".
Hugs to you both.
When I read that your husband has been fighting for 4 years, I thought, "how lucky," because my husband became castrate resistant after just 10 months and has been given a 1-2 year prognosis. But then I read the extensive treatments and suffering your husband has endured and continues to endure, and I know that my husband will never do the same--particularly given the statistics on survival for all these treatments that Nalakrats provides in his post. As an RN who has worked with dying patients and a caregiver of a husband with Stage IV PCa, I strongly believe that your husband's best chance for both quality of life and perhaps a few more months is hospice. There is nothing worse for survivors than the memory of their loved ones suffering, particularly if they know that this suffering could have been alleviated. If you read Ira Byock's book, Dying Well, and Atul Gawande's book, Being Mortal, it will help you make this decision. As Byock states clearly, in so many cases, patients and their families are merely prolonging the dying process, not life.
Thank you Raymonda 100. I totally agree with you and actually have read parts of those books. I have been ready for the hospice journey for a couple of years now (as I’m also a nurse), but can’t get him onboard.....he looks at hospice as “giving up” no matter how many times I try to explain that it isn’t. I’ll get these books out and reread them.....thank you for your encouragement! My husband actually was only given 3-4 months to live at diagnosis.....
Your husband needs to read them too.
This gist of the book Being Mortal is also captured pretty well in this PBS documentary film, which can be watched either individually or as a family to generate discussion:
pbs.org/wgbh/frontline/film...
Another film, Passing On, is also good for end-of-life ideas and discussion:
Charles
Prostate cancer is the devil, the evilest of evils. I lost my dear husband, best friend and true lifetime companion to the beast. Jon fought hard and did not want to die but after everything he went through he passed on 5-21-2016 surrounded by family and friends, yet I was fearful and did not want to believe that my Jon, strong, oh so strong, was going away. I miss him everyday, everyday and try to live the best life I can without him. I recently had to put his dog (Wallace) down after 14 years with this wonderful companion. Death is inevitable and part of life (sounds so cliché)and it is the hardest part about living knowing this will all end. Jon gave me so much to enhance my life and I try to live life honoring him as he was my hero and so was his Wallace. My heart goes out to all of you as this journey continues. Love you all, Dena, Jon Lacourciere's wife xoxoxoxoxoxoxoxo
Prayers and blessings to you and your family in your struggle, one which we will all face in due course.
Hugh
As I read your post and the many replies, it is very hard not to cry. Perhaps for my self a little , but a whole lot for you and the love of your life. Not to mention the wonderful responses from your friends. It truly is heart felt to see to the extent that one can feel for someone that they barely know but share the malady of life, I am not writing this at the expence of you or your husband, I am just very proud of you. I have decided to do the minimal amount of therapy that should give me some time but leave me something to move me forward. I am doing Lupron 3 month shot and than I will go off for 2 months. For what its worth God bless you and thank you very much. Respectfully Paul Andrew
Paul, thank you for your reply. I struggled with myself putting this topic out there as I have been coming to this site for years for treatment recommendations, but find very little on this topic. I would sometimes get mad at people who said they’d been on Xtandi with no side effects and even working a full time job......I was jealous as my John was in the wheelchair sometimes while on it. But we all respond differently, we are all made differently and we all handle things differently. There is no right or wrong.....just what’s best for your circumstances at the time. I guess if nothing else, I’ve put the Elephant in the Room out there. As Dr. Phil always says, “This is a safe place, to talk about difficult things”! God Bless you and your family during your struggles. I salute you in your decision and wish you a blessed duration of your life!! Spend each moment wisely!! Hugs
Hmmm, will have to check into that....he just had an old fashion joint!
Well we just passed this in MO this year, but not available yet.....was just reading about “fire crackers”. Thanks for the input.
I have been fighting Stage 4 PC since 2008....now on Zytica for the last year...my operation to remove the prostate was in 2003.....I know the fight....
No....and no chemo so far....side effects drive me crazy
Lucky you!!! I guess my John wouldn’t be here today without the chemo as he was only given 3-4 months initially. His very first line of treatment after 25 radiation treatments to the mets tumor in his head and then taxotere chemo.........they started us off running. We did get a year with no treatments after the taxotere, but have been fighting hard since. Wishing you and your family the very best!
I just looked back at your husbands posts. Besides this one there were seven of them beginning two years ago, The one that stood out for me was the "Radium 223 (Xofigo)" post where he's pictured with two young ladies, all wearing St Louis Cardinal's tee shirts. I guess he attracted those two young ladies cause he's a good looking man. Now if I could only answer you question "when is enough enough". I've mentioned the following story before so for those that have read it before, I'm sorry. My oldest brother Steve was in the VA hospital dying from stomach cancer. I visited him on the day that he passed away. When I got to his bedside he woke up from a deep sleep and said "John I was almost there, and it ain't so bad". He pass away that same night without us ever discussing what he meant by "there". I think I know what he meant. What I'm getting at is that "the end" ain't so bad. Your poor husband is suffering and I hate the thought that one day I will be suffering. So I asked my Oncologist what if I want to check out to that big comedy store in the sky, what should I do. He said, see a shrink. I thought to myself I don't need a shrink, I would need something to ease my pain so that I can say "it ain't so bad". Thoughts run through my head "jump in front of a subway train", "jump out of a window in some high rise", "drink a gallon of bleach" etc. I'm sorry I'm rambling on so I will try to answer your question of "when is enough enough?' My vote is that now is the time when "enough is enough" May your dear husband eventually say "it ain't so bad".
j-o-h-n Sunday 02/03/2019 5:07 PM EST
j-o-h-n, I’ve reread your post a couple of times as the first time I had too many tears. Not only is your name the same as my husbands, but my brother, Steve, passed away last year with cirrhosis of the liver. I agree, “it’s not that bad”....my husband is just scared of leaving me alone, not of leaving. Death will be welcomed......when he’s ready. It’s the knowing WHEN. When my dad passed away over 20 years ago with pancreatic cancer he kept saying “someone close the curtains, the light is so bright”.....it was late at night, no lights......you’re right.....”it’s not that bad”. Thank you for writting. I’ve been following your posts as well. The two young ladies are the girls who did his radiation therapy everyday.....they became quite close!!
Hi j-o-h-n,
In my experience, my "dark thoughts" would come and go, especially during the first few years after the initial diagnosis of my incurable Stage IV disease. I remember the great pain I was in just before initial diagnosis, and I would sometimes really dwell on the fear and anxiety and "what if" scenarios of where "skeletal related events" and advanced disease symptoms might take me toward the end. My spouse and I began attending a weekly cancer support group of people and caregivers who were dealing with all kinds of issues with various advanced cancers, treatments, and side effects ..... even unto death. The group was facilitated by a medical doctor who had been working with cancer patients in this way for the past 25 years. It was a kind of cross between psychological counseling and independent encouragement and patient advocacy assistance. Talking freely and specifically about the full range of emotions in such a setting was very helpful, particularly in the first few years.
Charles
To ctarleton, Thank you for your post. Yep those "dark thoughts" do come and go. I used to attend the USTOO support meeting here in New York City but stopped because I found the live meetings to be too much of a downer. I couldn't vent my feelings with my silly humor when all the other guests were so morbid. So they made me depressed and I discontinued going to them. I love humor and that's what keeps me going. So I bury my head in humor now because the sand kept clogging up my ears.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/04/2019 5:52 PM EST
You are welcome to the less morbid groups Malecare runs in nyc. Https://Malecare.org/nyc
Man, you really have that artificial intelligence word recognition in high gear. Wow.
It's a good thing I didn't inadvertently post about contributing some more dollars to Malecare. You would have had me dead to rights!
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/04/2019 6:12 PM EST
You Sir , are the one and only one spreading humor here.. similar to that us too group.. you attended.. Nothing can stand against humor.. keep spreading cheer...
Thanks for sharing that.. “ the first few years. “ I can relate ..sounds like you really benefited from those group session. Nice
Some philosopher said.. God doesn’t tell us how good the other side is because God wants us to endure this world first.. Just pray There ain’t no hell. Don’t want any devil to be on my ass for eternity. Make peace now before we cross the river..
You're right. I already had Satan on my ass, that was my ex-wife. Lordy Lordy I do declare, she is a devil, so beware.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/04/2019 6:06 PM EST
"The two young ladies are the girls who did his radiation therapy everyday".. Hmmmm That's what he told you... (See I'm still into humor)
p.s. I have that same feeling about leaving my wife and my son alone.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/03/2019 5:27 PM EST
I am so sorry for all of the pain you have both been enduring. This is a rough trip -- and one that we are not far away from embarking on. Not as rough as your road, but my husband has done through all of the therapies (only one chemo though - early taxotere) and he's not keen on doing it again. He remains "freakishly healthy" in many ways but all signs are pointing in a negative direction, and he's feeling it.
My recommendation is go outside of your oncologist -- no oncologist should be "pushing" chemo on a patient, esp. one for whom it is clearly not working and is in so much pain and is generally weak.
- see if there is a cancer center near you that maybe can provide a social worker and/or patient navigator or get a referral to a therapist who specializes in cancer patients
- talk to his (old?) primary care physician, someone who knows him and you and can perhaps provide some general medical guidance
- talk to hospice. I know this seems dire and admitting the end -- but actually it's not. You can talk to hospice at any time, and they should tell you what they do, how they approach things, how they work with you etc, WHEN he and you are ready. I had a friend with ALS and his wife did this, well, they did it together - just talked to hospice people, and it brought them all relief to know what was there when they wanted and needed it. Hospice might also have some other referrals for you regarding social work and pain management, etc.
- talk to each other honestly and as forthrightly as you can. find out what you both want, although his wants come first, I think, and even if you disagree, you will always know that you did what he wanted, and that's a great gift.
Also know that it is OK to take a little time to decide things. It's been a long haul, taking an extra week or two to decide what to do next is OK. You've both earned it!
Take care, and I wish you the best at this really challenging time,
Brenda
Thank you Brenda. His Onco gives him as much time as he needs and has been very kind and understanding, even though she feels like most of his pain and suffering is psych more than treatment.....it’s a lot of both, but mostly it’s treatment.
The psych *is" real pain and suffering, and part of the treatment. And not sure how rising PSA is psychological. (Also - sorry - I didn't see your comment re: hospice in another post -- you seem to know what's what with that.)
I really hope that maybe you can talk to someone else - another doctor, an expert oncologist perhaps in a cancer center, who can give you a bigger picture of things? One of the best things we have done from the start is have a consulting expert oncologist from UCSF who is a reference point, and works with our local oncologist when things get tough. And he's really good at providing a big picture. Note - we travel 2500 miles to do this, so yes, it's worth it. If there is any way for you to find a research oncologist, I think it might really give you perspective. This person can review all of the treatments and scans and current status. just provide a fresh perspective at the very least. your oncologist should be happy to get this input and support from a fellow professional. If she's not - I'd look even harder at finding some other advice.
I hope you are doing OK through this. I know it can be rough. My husband is still relatively healthy and still gets pretty mean with me at times, and it's just hard.
Hang in there,
B
Encourage him to live.. But if he says enough then it’s enough.. Your love will
Take him where he needs to go. We all pray for mercy and an end to all suffering.. The time and date of birth and death are above our pay grades. Lord have mercy!
Hi Jashelby
I don't know you, I don't know your husband. Yet there is a sense of familiarity with your situation and the hard questions that we ask ourselves. When is enough, enough? As a spouse, we honor the one with the disease and what they are trying to tell us through words or actions. We try to weigh that with the medical profession and what they suggest. And we have to consider our own health...are we taking care of ourselves so that we can be there for them now and then live a healthy life after they are gone? I'm 57...
Someone suggested bridge palliative care that can then become hospice care if/when the time is right. We just initiated it this week and pain management has become easier and with a 24/7 number to call, E/R visits unlikely. Dying at home in as much comfort and peace is the goal but hospice care likely won't start for a few months or more as we are managing ok. DNR in place, Physician orders for scope of treatment in place, pain meds being tweaked to find best combo, sense of control in how to manage and who to call if needed because the anticipation is it's only going to get worse. Still in treatment as the cancer has leveled off and the MO suggested that if it is keeping it from growing, why not?Well, the side effects from treatment, maybe? Can't help but wonder if the treatment(s) is stopped, would there be a brief period of relief before dying?
Thank you for your post, it tore another hole in my heart and also left me open to enjoy a nice dinner with my husband, dogs curled up in their spots, kids gone from the home but doing well, some light hearted laughter over past events and a sense of - we're doing the best that we can, now and in the future and we are there for each other no matter what.
May you find those quiet moments of grace that allow clarity as to what is the best course to take in the next moment.
Peace, Karen
Karen, thank you for the heartfelt words! As the guys on here are brothers, we are sisters walking this path together! It is very comforting to have that 24/7 # for advise when you need it. I wish you and your husband many many more quiet times together, and peace! Hugs!! Susan
Firstly, I would like to say how sorry I am that you are going through this. It must be so hard on your husband as the sufferer and for you as the one who loves him and only wants the best for him.
I remember when my husband fought I always felt we needed to fight and couldn't stop fighting. I felt like that until, in the last four weeks of his life, I saw how poorely he was and how little he was able to enjoy life because of all the pain, the weakness, the nausea and the pain. However, we weren't given enough time to decide that enough was enough and that we should perhaps stop all treatments and, instead, make the most of the time we had. If I could do it all over again, maybe I would do it differently. Who knows... But I honestly think that it is something that the two of you need to discuss openly together and with maybe his oncologist and doctors who are able to tell you the possible outcome if you stop treatment and how long he would have.
How does your husband react when you suggest that maybe he can stop fighting if he doesn't want to fight any longer or if he doesn't have the strength anymore? Maybe it is what he needs to hear from you... I don't know. But it is possible. Don't enocurage him to give up, but tell him that it is okay if he doesn't want to keep going with all those treatments.
Again, I am so sorry that things are this way.
I always feel that fighting at any cost isn't right. Because what are we doing it for when we know that the cancer is terminal and that we are only fighting for weeks, maybe months? Would we like our loved ones to have a good - as good as can be - time for the last part of their lives or do we really need to fight and fight?
Love, Mel.
✌️
On the dot, MelaniePaul. Great post with a lot of deep insights. Cheers !!
You can now see that you’re not alone in this journey.we all are at different stops along the route but we all live on the APC train.. Your love will endure.. We pray for mercy on your husband and an end to all suffering and pain..
Thank you Lulu700. Your comments are always dead on as I’ve been following your advice for a long time now through other posts!! You are a kind giving soul!! Hugs
We all are the same.. Thank you and God Bless you both in this time of trial.. 🙏
You have had One heck of a response here.. A lot of us care brother.. , hope today is a o k day for you... Scott🌵
Actually today he’s in the hospital getting his pain under control, we hope! Has to decide now if he should get a suprapubic cath as he can’t empty his bladder because of scar tissue from the PCa....so the question continues.....when is enough enough?..although I’ve told him this will give him s better QOL, he doesn’t quite see it that way!
Praying for your husband and yourself. We just got out of the hospital our self with bladder kidney issues from PCa.
Thank you! My ❤️ goes out to all my brothers and sisters on this journey! So thankful for all the hugs and support! 🙏🏻🙏🏻 being sent everyday!!
Thank God ! That he’s out..
Pain under control is great to hear.. suprapubic cath... Ouch! What a choice! I felt like Frankenstein with all those tubes on me.... I do understand the distress on you both. Even If there is hope and desire to live it’s one hell of an ordeal to live through.. without hope or desire to live he won’t.. I judge no human for bowing out of a painful existence.. As a man I feel for our partners that witness our decline. You must keep yourself up no matttr what. The caregiver can go down with the ship. That helps no one. Stay strong and support him in whatever he wants to do. This is not abandonment . This is true love. Life or death it won’t fade. Two bodies sharing one soul is Emortal love. You love him he loves you. That’s eternal.... I pray for him to pull out of the hospital soon .. Only then can you both decide.. He may improve in many ways he could get better...but it is a fight. In every act that’s Done with love there are no mistakes to be made..
Thanks Lulu700....wish I could say the pain in under control, but it's not. Says the pain in his tailbone and Right iliac is still killing him. There's a lot of anxiety and fear factored into his pain. Scared this is the best it's going to get, fear of the unknown, fear of how I'll do when he's gone......on and on, but not really any different than anyone else. Wish he would find God, know that would help the most, that's what gets me through the darkest hours! Thanks for not leaving APC!! We need you on this site!
How’s your husband doing? Praying for you both,
Kim
Still hospitalized in pain. He knows he’s dying, even though his Doctors won’t tell him. Your body knows! Hoping the Drs have this end of life discussion with him soon! Wish I could be giving a different report. Getting ready to go see him now, maybe I’ll be surprised!! Hope so!
I was so touched by your heartfely response as my 76 year old husband after 10 years battling adv pc with radiation,Lupron on -going, Provenge, Zytiga, Xtandi and now Docetaxel 6th infusion,is now grappling with which fork in the road in this challenging journey he wants to take,I.e. quality of life or ravages of lifelong chemo until his body or he says stop. I have been through home hospice with both my parents who died in the last 3 years and now am much more aware of uses and abuses of extremely strong drugs that could be managed more conservatively and humanely through comfort care options in the last stage of life. We have arranged for palliative care to assist us, when time comes, at our hospital and they will also assist us with home hospice when we need them but I want to explore THC options you mentioned. We don’t have medical marijuana in Dallas, TX. I do have CBD oil from a pharmacy here that I got to help him sleep but not sure about strength I need for him and know nothing about THC offerings or best on line products and resources. He would much prefer THC over pain meds, gabapentin(which we just tapered off of for CIPN)etc. when possible . Do you have any recommendations ? Jrb70
Thank you for the information.
Sending you virtual hugs and prayers for comfort and no pains for your husband and strength for you. I salute you both for doing the best in fighting this horrible disease until the very end. Your husband is lucky to have a very loving and supportive wife. I will offer a special prayer for you both tonight.
Thank you dvarola....I appreciate the support and accept the prayers!! I don’t think he’d be as scared if they (the Drs) would just be frank and honest. I realize hope is a great thing, but so is honesty. But I’m sitting here, smiling and holding his hand, he doesn’t notice the streaks on my face from the tears spilled on the way here this morning! Me getting angry will serve no purpose right now!
"Never out of the fight."
Enough is Enough - Alicia Morgans, MD, MPH, 
Not the treatment I was expecting for my 89 y/o Dad
Advanced Prostate Cancer to bone and liver
Husband fed up -- Update and questions
bone scan following chemo
