I suppose I never had a great understanding of what hospice was all about. Just a short background. Prostate cancer for 18 years, approx 13 years at stage four. No surgery, instead 40+ rounds of radiation, Lupron, casodex, aberiteron, enzalutamide, three clinical trials, don’t remember how many rounds of chemo (does 10-12 sound right). Anyway, I was in extreme pain towards end of September of this year and decided along with my wife and physician it was time for hospice. I was told that one particulate area of consideration was a determination of six months or less to my expiration date. In my case I sincerely did not believe I would make it two weeks. In fact my 84 year old mom made the decision to travel during these weird times for one more visit. At the time of hospice placement, trust me, I was just hoping to make it two weeks. Well you can see by any calendar that the two week timeframe has come and gone. Hospice has done a great job of managing my pain except when I’m out and about. And that’s where I’m a little confused. In order to be most comfortable I sit in bed, watch TV, do some Bible study and read books. But that gets tiring (boring) very quickly. I feel it is unfair that my wife is spending most days figuring out what and when I should eat. Asking if my pain levels need attention (more narcotics) and on and on. As for me, I don’t think vital organs are getting worse, just the bone Mets. I feel like if I’m in hospice, I should be moving faster to dying (does that make me crazy or what?). Everyone is being so nice and helpful but I’m getting tired of being a burden on them. I’m not sure I’m seeking any advice or reaction, it’s just something I needed to get off my chest. I really appreciate all of you on this site. Your compassion, experience, knowledge has just been mind blowing. God bless each of you.
Eight weeks into hospice. Strange exp... - Advanced Prostate...
Eight weeks into hospice. Strange experience.
Jim, don’t be in such a rush to get out. Especially if your pain is manageable. Have you ever considered that perhaps these people being so nice to you actually want you around for as long as they can? Thinking you’re a burden can be a self fulfilling prophesy. You’ll have plenty of time to be gone. Try and find some joy in the time you have left.
Schwah
I know you are right Schwah and I really do try to project a positive attitude. The comments in the post have never been shared with anyone accept the folks here on healthunlocked. Trust me, I will continue to fight this beast until the end. I anticipate many prayers to be answered in the immediate future and I want to be around to see even more answer soon. Thank you for the encouragement.
Unconditional love flows both ways. How long have you been married?
44+ years
Jim, what you describe sounds like travel anxiety; your bags are packed and you are waiting for the train. To me, this is an insightful thought of a person who has lived well, thoughtfully and fully... someone who has never made life all about themselves, someone who still will be present long after the train has pulled away. What you are waiting for is a transition, not an exit.
Jim...Your this post is very helpful to a lot of people including myself....The understanding that even in the terminal end stage, the mental faculties remain intact is very reassuring.Even on last days..Mind remains normal while body slowly winds up is good end ..this is so relieving because one of the fear is losing our mind and not recognizing our loved ones.
Thanks for this insightful post.
Wow , thanks for posting this … interesting insight and experience for all of us.
36 months ago in October … My wife and I sat down at a table of doctors ( for the first time ) with “ that look “ on their faces and they strongly urged me to enter inpatient hospice immediately. I think you have to be there to fully appreciate that event in your life and obviously you have and do. Like you I was wracked with intense bone pain , all my vitals and blood work totally crashed. They thought 3 - 4 weeks on the high end, but probably much less. This was my very first diagnosis and offer of care.
I opted to at least try “ something “ and Lupron- Xtandi was the decision.
Its 36 months later , and like you …shockingly I’m still here. Im a little worse for wear around the edges and I can always see that portal into the hospice, just right over there ( so to speak ) ….
I want to thank you for sharing this with us … you have crossed thru the portal and your thoughts, feelings and perspectives are invaluable ( to me at least ) you are one impressive guy. I hope I can follow your amazing example .
Thank you , much love brother ❤️❤️❤️❤️
Doctors gave you 3 to 4 weeks and you are alive and kicking here after 36 months(3 years)Once again this proves that doctors are not God...some of them may think they are.
I know I was really messed up and , thank goodness, you are right …..they don’t always get it right. They were going on their best information , I’m sure. I still have mixed emotions about them letting me see my biweekly blood work march completely off to the zero line on the graphs. I guess its good to be up front and honest with your patients tho. I really appreciate that Jim would take time, right out of hospice, and give us a look inside …so to speak. How lucid he is dealing with things, especially mentally. I’ll bet everyone out side the doors waiting for the store to open , like me, really appreciates his generosity , in this time of his life. I know I’m curious, bet others are too ….and I know each of us will prolly be a little different.
Hope this isn’t too many metaphors yayahahahaya yayahahahaya. Jim seems like a manly man …. I wanna be like Jim.
❤️❤️❤️
I agree about Jim, and I feel the same way about you.
Jim for sure , dunno about me. Yayahahahaya One thing I have discovered is that I just can’t let things fly because I have responsibilities. I’ve got the the hammer, married 43 years. She is lock stepped synchronized with me. If I get a hitch in my giddy up, a bit later she’s got one too. If I let agony or anguish fly , pretty quick she’s got it 2X. . If I bust out crying, ….there she is. No one wants that for our better half, at least I don’t. You just have to remember that you have responsibilities to those loved ones around you. Sometimes it’s hard to remember when your nitty is getting gritty …. but ….. whoop there it is yayahahahaya yayahahahaya Hospice ???? How does someone with responsibilities manage that smoothly ….. sounds like Jims got a handle on it …. This is some kind of heavy stuff buddy.
Just say’in ❤️❤️❤️
It does sound like Jim has it handled. I hope I do it as well when I get there. I also know what you mean about loved ones. It is the heaviest of stuff. So glad to have so many smart, well minded people as you and Jim and so many others as guides.
Kaliber, I wrote an absolutely great response to you earlier but hit the X instead of send…sigh. We’ll never know how great 🤪🤪. I thank you for your kind words. I’ve followed you for a long time and pray everyone personally following you has that option too. Be a manly man my friend.
thanks for your kind words too. This group really is a source for “ the rich texture of life “ isn’t it !!
❤️❤️❤️
Some of the of the best advice I ever got from another survivor was to feel free to cry, maybe cry a lot. Our emotions get right up near the surface during these stressful times. I cry at ads sometimes. My wife and I have developed a signal that the crying is just emotions breaking through and not to worry. Since the advice to cry was the third thing on the list, we hold up three fingers to indicate that we’re ok, not to worry (while crying our eyes out). Good luck. (12 years stage 4)
Good advice. With zero T , I can burst out crying looking at my morning keto meal ( who wouldn’t ) which washes down my morning pills. yayahahahaya. I usually signal with laughter while crying . It works pretty good. If I really need to cry I go off where wifey can’t see me. If she catches me really crying, it can put her into crying depression for hours or longer. I cry if I need to but it’s a rare thing considering. Friends often wonder how I can be so upbeat all the time , considering how screwed and trashed I seem outwardly. I always say “ it’s better than the alternative “ , o r “ great drugs “ to beat tired cliché to death. Yayahahahaya
❤️❤️❤️
I would Google keto meal but it would probably make me burst into tears Japanese With juggling of eggs knives hatchets and volcanoes of fire last night. After I was done the chef pushed me out-of-the-way. Very satisfying
Yayahahahaya, those teppanyaki meals are fun …the onion volcano and flying blades.
Keto is short for ketogenic meals which are low in carbs. I have to eat keto food because Lupron drives my blood sugar up to dangerous levels and the three diabetes meds I take can’t control it. I eat less than 50 carbs and less than 1000 calories daily. All and any meat or cheese you want tho.
I do eat a lot of Japanese foods,…. the hammer has become the queen of miso having mastered the art umami to perfection. Miso can be prepared with fixin’s suitable for breakfast, lunch or supper.
I should point out that a keto diet side effect is “ serious muscle loss “ ( Google it ) , and of course the extended low T ADT causes serious muscle loss too. Combined they can be very harmful. Of course exercising helps mitigate those dangers a lot. Some , like me , can’t exercise much because of skyrocketing Bp brought on , once again, by ADT.. This combo , along with bone mets in my left knee and on my fibula tibia caused me to suffer leg damage and took away use of my left leg a few weeks ago. It made me an invalid unable to walk. I’m rehabbing my leg now and back on my feet , a little … trying to get back to full walking again …. pretty soon.
Surprisingly I have not cried very much during this journey either and I certainly have many friends that ask that question - "How do you stay upbeat?" For me the answer goes back to my reliance on Jesus Christ. When I start to get down too much I just remember that this is in God's hands an He can't make any mistakes. There must be a reason for this. That's not to say I don't get depressed everyone once in awhile. Heck, child number 3 and his wife just announced she is pregnant. They have been trying for years so I'm very excited for them, but I won't get a chance to meet that grandchild. Thats a real bummer. Granddaughter number 1 is going to get married in the spring. Going to miss that one too. Those are legitimate reasons to be angry and depressed. But, oh well, I know God's plans for me are greater than what I see here on earth so I guess I just need to trudge along.
You are the perfect example of how beneficial a strong faith in your religion can be. You are in hospice and finding much strength in Jesus. Pretty kewl … a wonderful bonus over others that might not be religious and a great example of how things could be with faith. Families can be a double edged sword, huh ? On the one hand is the joy in your love for them all , your kids , their kids ….all the love they bring with them to you. And …. Like you say, the anguish of the sense of loss this crap spawns . Since you are in hospice , your caregivers are well equipped to mitigate that depression and anguish if you feel it’s getting to be too hurtful. You need only to ask and they are skilled at fixing that for you rather quickly. Pain meds for the body and great pain meds for the mind can be had for just the asking.
Like you , I’m quite religious too. I’m a retired Buddhist priest ( married priests are called lay ministers and live outside the monastery ) . I conducted the Fresno Soto Zen meditation group for a number of years, representing our monastery in Mount Shasta. I “ retired “ about 15 years ago. I spent more than 20 years sitting staring at a blank wall ( about an average time ) ,a couple hours a day, before I started to experience strong benefits of Soto Zen meditation. It’s not a religious path for the faint hearted yayahahahaya. Soto zen Buddhist are very accepting of other religions.
Welp buddy , hit me up as much as you want, I’m good to go with it … you are forging a path that most of the rest of us here will follow directly behind, some sooner ( me probably ) than others ….. but all of us will benefit from everything you will share with us. Even random associating. Plus it’s great just talking with you on your journey, with a like minded traveler.
Thanks for this buddy … great stuff and I hope “ today “ is a pretty good one for you.
🦋🌈🌻❤️❤️❤️
I just blew tea through my nose re Keto meal. Well played!! I'm very early in the journey. RARP in '19. BCR in Sept 21. Mets on T10. SBRT to that and 25 x IMRT to pelvic lymph nodes PSA .032 and just started Lupron/Zytiga. So early early days. But I discovered when we realized the adventure wasn't concluded with surgery, that the view from the 'seat on the rollercoaster' is very different from the view from the stands. I think it's harder to watch than participate. So, like you, I find I watch the outbursts and keep needless conflicts out of the picture, because the impact to my better half gets amplified by her if I don't.
You all give me hope.. I only get from this group.. dont get me wrong my family is here.. they push me to stay positive and I so have been strong willed all my life.. but the not knowing when it will all cave in is the worst.. I appreciate and am glad all of you have been blessed with many more years than Doctors have given.. hope I am blessed also...
Jim - it broke my heart to hear you think of yourself as a burden.
My dad passed away very recently. My mom, myself, and my 3 sisters cared for him at the end. Initially, the pain episodes were so severe we also did not think he would make it past 2 weeks. I prayed he would pass quickly as I could not handle to see him in so much pain and could not believe how unfair it all was. He also had no issues in any vital organs - just bone mets.
I believe God answered my prayers in His own way. Once we figured out the right medication and care routine, we had 10 great weeks where we managed to control the pain and spend time with my dad. Yes - we too fretted about his medications, if we was comfortable and when he should eat (although dexamethasone really helped with appetite and he didn't have any problems asking for food). He was not much of a "sitter" or TV-watcher in life and was always active, so this was also a big change for him.
I got to spend so much time with my dad in those 10 weeks and hear all his stories, something that I wouldn't have gotten if God answered my initial prayers. I heard him say some similar things about being a burden but I made sure he knew that none of us felt that. He would do the exact same for any of us.
Although I am overwhelmed with grief and mourning, I feel so blessed to have had that opportunity to care for my dad and would have done it happily for many many more months.
You are not a burden! Your wife loves you unconditionally and wants to be there caring for you. Enjoy every minute with her.
Praying for strength for you and your beautiful wife. God Bless. 🙏
Thank you for your words of wisdom. These last days are precious, I hope you can enjoy them with your family and friends as much as possible.
Hi Jim,I've had similar thoughts over the past several years as my physical capabilities were on a downward decline with years of accumulative cancer(s) treatments. The less I found myself able to do, the more I had to live with the sadness and loss of my former roles & capabilities, and the impacts they inevitably had on the "details" of the life my wife and I have shared together.
It is hard seeing so many things - small and large - shifting onto her, and whatever other "workarounds" we try to put into place to try to ease the drip, drip, drip of stresses and burdens on her. She still attends a cancer Support Group that we used to attend for years earler. She can still express some anger, resentment, frustrations, fears, etc. there, too. It's a good thing.
In our experience, being very open to sharing our "vulnerable" feelings has helped a lot. A bit of humor goes a long way, too.
The other day my wife went out for lunch at a Greek place with a friend. She had some of the typical foods, including some small pieces of Pita bread. She was in a good mood when she returned, and she gave me a small kiss and a hug, and affectionately called me "Her Little Pita".
I smiled at her and aked her if she was aware that "pita" was also an acronym for Pain In The Ass. She couldn't help herself and she cracked up laughing right out loud. She also got some excellent reactions from others who "got it" when she shared the story in the Support Group.
Jim, thanks so much for this post. Many of us if not all will face hospice and pain sometime soon.Would you be so kind to continue the story as long as possible. It will help us understand how it might go for us. I worry most about the excruciating pain from active bone mets. I already got to experience it for a few months before finally getting a Dx of stage 4 fully metastized to my entire skeleton with PSA 1300+ in 2018. I don't look forward to a repeat but apparently beyond my control.
I feel for you and wish there was anything helpful I could offer except I'm probably not far behind you. Please guide the way.
2Dee
2Dee, I will do my best to continue reporting my experiences. Hopefully each week I can post an update.
Hi Jim--you should know your experience is far from unique--many people who go into hospice expecting not to last very long discover that once they get there they feel better, maybe their pain is under better control, or maybe because they've accepted that it's time to go they feel less stressed and their body then has a little more energy and that energy helps you last longer, or whatever..... but if your pain is mostly under control and you have people who love you, you've got the gift of time to love them back. If this is puzzling and you feel odd, well, you've got every right to feel that way, it's strange, it's not something you've ever done before and maybe it's something most of us can't ever fully understand. But what you feel is what you feel, there's no right or wrong about it. Maybe you're writing about this will help some others when/if they go through it, so you've already done something good with the time.
God bless you and be with you Jim ... I will say a little prayer for you ... Always best wishes ... Nous 
I love prayer. Thank you Nous. God’s plan is always right.
you're welcome Jim ... i offered Sunday Mass for you ... i agree that, as you say, God's plan is always right ... as you probably know, Romans 8:28 basically says that God allows what happens; no matter how hard it may be ... to happen; not to us ... but ... to happen; for us ... blessings and best wishes ... Nous
A wise person told me that accepting kindness and help is harder sometimes than giving same. When it’s your time I believe you’ll be aware and then you can surrender to it. Until then perhaps you could enjoy the love and support.🌸
Praying for you and your wife Jim. God Bless you.
"determination of six months or less to my expiration date"
That prediction is a requirement, but still many people stay in hospice for years.
It's your choice to make good use of the time or not.
Now would be the time to experiment with cannabis for pain control.
You actually have a lot more control over your circumstances than you think.
If the pain and narcotics are getting too much for you, you can always elect to stop taking water and food.
Jim, God Bless you and your family.
Jim. , wow sounds like you have had quit a war there, don’t be in a hurry ,after watching 2 loved ones on hospice. You will know the time. I love the hospice people they are the best. Embrace your days and draw your loved ones close . 🙏🙏🙏🙏
Jim, this is Kay, Dwight's wife. I don't have any words of wisdom for you. My husband was diagnosed as Gleason 9 in February of this year, so I'm still pretty low on the learning curve. I just wanted to say from a wife's point of view, your wife most likely just wants to take the best care of you that she can and wants you to be here and be as comfortable as long possible. Pay no attention to the doctor's timetable, only God knows when your time is up. God bless and prayers up.
Wow! I just read Jim's post and all of the replies. I am trying to come up with something that isn't repetitious; however, it would be very difficult to add anything to the 30 plus heartfelt replies that you warriors have taken the time to so eloquently post! Your replies are confirmation that all of us have so many compassionate comrades on this site doing their utmost best to make 'moving on' a bit more 'understandable' (for lack of a better adjective).
Jim, you are an inspiration to all of us and I only hope that I can be a fraction of the man you are when my time comes! May God grant you the strenght to continue your journey in negligible pain and for many, many more moons.
Sending thoughts, prayers and love from abroad to all of my mates on this site!
Ron
Ditto to the prior posts, Jim. With thanks, admiration and prayers.
Jim I hope I’m half the man you are when my time comes, which they always tell me is soon, and I always go beyond. I’ve got tears in my eyes. So much love in all these responses and I don’t want to be repetitive. Love you brother
From my angle as Grumpy's wife dealing with this crap for 20+ years, it is a burden. However, I want to endure it as long as possible just to spend more time together, boring or not.
Thanks for your frank show of feelings!
Have you and hubby been dealing with stage 4 for 20+ years??..I really am trying to get a grasp of if I will be here or can set my sights on being here for my younger children?? Thanks for your time
Thanks, Jim, Much love and admirations
I can’t add anything to all of the wise words here. This is something we all are likely to face. The words that you and fellow travellers put down is there to help us all. Enjoy the pain free times and the love of your wife and family. This time that you have is there for a reason. Embrace the stuckness (wise words that I have used when riding my bike and finding things don’t go to plan and enjoying what is right in front me). Take care
Hi Jim,
You write that “hospice” is managing your pain.
I’m no expert! However, if your pain is being managed then are you possibly having palliative care (and not hospice).
For some doctors the differences between the two may be slight. However, the emotional/psychological/spiritual impact could be different for your frame of mind…
(You say you are reading. I’m reading a good book- “When God & Cancer meet” by Lynn Eib. You may enjoy…)
You are also reading Scripture…Could your “faith” and the “love” around you be making a difference in how “things” are with you…Certainly sounds to me that “the Lord is with you”!
Peace and prayers!
Bill
Hey Bill, concerning love, prayer, etc faith plays a HUGE part in this journey. As far as hospice or palliative, I just know we’re are visited at least once a week by a hospice nurse, we have a hospice assistant who checks in at least twice a week to help when needed for showers, helping my wife change sheets, etc. we were also visited by a hospice social worker. So, what’s in a name?😀. Thanks for reaching out.
God Bless you
.....and thanks so much for the post
Jim, Thank you so much for your moving post. I really do believe in the power of prayer (me believing in God it depends on the day). I will say I prayer for you, and that gives me purpose this day.🙏
Dear Jim . Are you in home hospice? I say that 18 years past a 4+5 is a miracle with this dreaded Pc . You have love at home as I do . My wife became my caretaker at 53 . I’m now 60 . I too strongly follow Jesus Christ … This wasn’t imposed on me . I choose this as a child . Th flesh is weak . Good over evil and all of that . I’m praying ,in Jesus name , for you JimBarringer and for mercy for us all . Love is eternal .. 🙏🕊
Lulu, I am at home. Currently laying down watching Sunday Night Football with my 6 month old Boxer squeezing me off the warm and comfortable part of the bed
In this day and age we are both lucky to have a home . I’m glad that you are home . Sunday football and boxer babe to keep you on your toes . Boxers are so friendly . I’ve got a 13 pound bichon mix “ Lulu” that sleeps against my back . I feel that love . Everyman with this must feel the same sentiments of being the weight dragging down the ship . Our wife’s suffer so . Love is the reason to endure what ever comes . Hang in there . God Bless🙏
I am no where near your level of stress and anxiety from dealing with this so long. I was diagnosed stage 4 prostate cancer in April 2019 on my bday. Had surgery to remove. Worst thing I ever did.. damaged my urethra. Since then I have had 40 radiations 6 months following surgery and I guess those were no help cause 8 months later I have bone mets to multiple locations.. have undergone 6 chemos and now on xtandi.... Dr says 6 months to 10 years to live... how do you not get overwhelmed with this?? I have kids and grandkids... a 4 year old son and an 8 year old son and 13 year old daughter and 17 year old daughter... they will hurt the most... if I could get 10 years I would so feel blessed... to see them grow up.. I like you hate my quality of life but love seeing my family everyday. Stay positive till the end and remember you aren't the only one in this.. your family is also and they want you as long as they can have you... I cry myself at night because I never sleep.. but I know I dont want to go any sooner than I have to.. I have swollen legs from lymph nodes and have neuropathy from chemo and continual incontinence and a suprapubic catheter and still fight leakage from the damage to my urethra.. I will suffer everyday.. and be blessed to see my wife and kids one more minute... stay positive
Bab, this disease is so cruel. I am so very sorry for the failed treatments. I am praying for you right now to remove that stress and anxiety and perhaps if you are willing, encourage you to check out your Bible. Go to the Book of Philippians, chapter 4 verse 6 and 7 where we are told "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus." You mentioned your wonderful family, so obviously there are things you can be thankful for. Prayer and releasing your burden to Christ allows you to then focus on other things...not on cancer God bless you my friend.
Like so many here, I too at 75 have been thinking about my EoL. My journey began in 2006, however, despite radiation, chemo, hormone and T-suppression treatments, I have been able to live my life as the Lord planned it for me. My 12 grandchildren (blended family) have kept me busy and gives me enjoyment. I have thought about hospice/palliative care too, and here are my thoughts: when I reached the time where living is no longer bearable and I cannot do physical functions by myself I’d consider going the the VSED way (google it), along with pain blocks. I don’t want to live for a long time being a burden to all my loved one and having them remember me that way. May the Lord and Jesus Christ gives you His love, peace, and comfort.
🙏Amen data! Praise Jesus Christ ! ❤️❤️❤️🕊
Jim. You are NOT a burden to those who love you. I cared for my beloved husband at home hospice during the height of Covid. It was my great honor to care for him and to keep him pain free with the help of his hospice nurse. You are a treasure to your friends and family. Cherish the special moments. Our Lord will call you when HE is good and ready to welcome you into His glorius kingdom. God bless. Susan M
Hello James, I predict you will be dancing at your Granddaughter's wedding in the Spring and will be at your Son's first child' baptism who will be born in late July and her name will be Thavma. You will be around for at least 6 to 7 more years which will give you enough time to finish your "detailed" autobiography. (I am always right except the one time when I married my first wife).
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 11/22/2021 9:30 PM EST - President JFK assassinated in 1963
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