Another week down on this hospice journey. Actually it has started to be slightly boring. I lay down in my bed almost 24 hours a day. I primarily do that because it hurts so much to do anything else. So, each morning I wake up to the same routine. I have noticed some physical and psychological changes since last Friday. First and foremost is a noticeable increase in fatigue. If I do manage to move about, perhaps to the living room or to my study, I am actually tired. For those of you who have advocated exercise - you are absolutely correct. As my hospice nurse said yesterday, the old adage of "use it or lose it" has much truth behind it. Early in the week the pain seemed to be controlled better than a couple of weeks ago, but today I can not make that claim. Although it is early, I have already taken a total of six zolata [hydromorpone} as well as 12 milligram of methadone and I am still in some significant pain. I'm hoping it will start resolving itself as soon as the latest pills kick in. But taking too many narcotics bothers me. Not because of the addiction possibilities (I mean, come on - why worry about that at this stage of life?] but because of the potential constipation consequences. The pain of cancer combined with the pain of constipation is really not something to look forward to. The other day as I was just sitting there (you know where) I realized that part of my constipation issue could also be attributed to the weakness I am experiencing. I think that weakness may be hindering me from pushing one out (sorry for that thought in your head).
In spite of the pain when leaving my bed, I really do crave an opportunity to just get in the car and ride around. I'm not allowed to drive anymore but just getting ourt and about lifts my spirits, The problem, again, is the pain. I have completely lost that gluteus maximus muscle which means I am practically sitting on just skin and bones. And the bones I am sitting on consist of the highest, densest concentration of my cancer. So I find myself shifting in my seat so I can find a relatively comfortable position. Thankfully our hospice nurse has recommended a particular cushion that she feels will lessen some of that pain. God willing I will report on the cushion next week. By the way, if or when you get to the hospice stage, don't be shy about letting the hospice organization know how well the nurse is doing. They are a special group of people who deserve recognition for the work they are doing.
Finally I have always tried very hard to be a nice person. My concern from the very beginning has been that I don't become a jerk. I've talked with my wife and kids about it, with my closest friends and my pastor, who is also one of my closest friends. Over the course of the last two weeks I have absolutely been a jerk to two people in two seperate encounters. Those episodes, after reflection, have driven me to my knees in tears. That is not who I am and that is not how I want to be. I have extended profound apologies and they have been accepted, but this cancer in its latest stages has caused me to be judgmental in a manner that I would not have exhibited before. I may have said the same things, but the delivery would certainly have been kinder and gentler. As I said, I have been forgiven by those I hurt and certainly by God, but I should have never hurt them to begin with.
Well, that's about it for now. I continue to read posts every day and continue to be impressed by the knowledge, kindness, clarification and sincerity people on this site provide. I am an infrequent poster as well as an infrequent responder. Just imagine how many people are picking up such valuable information who never post or respond. You are all significantly impacting lives each and every day. Thank you.
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JimBarringer
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Wow again … so much of your experience there parallels my own current life that its uncanny.
I think I’ll work backward …. First about being a jerk , not a nice person, judgmental ….. please don’t forget you are on heavy opiates and opiates make strong changes in your consciousness and personality … very strong changes. What you are describing is perfectly opiate mind SEs …spot on. This might sound droid but, it’s not you buddy, it’s the drugs talking, seriously…it is. Its not a bad idea that everyone else around you understands this fallacy is drug induced and to expect it and shine it on . It’s a SE and nothing more, it’s drug induced and disappears as soon as the drugs clean out. So don’t be hard on yourself or feel bad about it, try to be as inoffensive as possible but its a fact of your current life and its drugs …nothing more.
Then comes the “ glitcher “ buddy …. Right smack dab in the middle of those powerful opiate SEs is that nasty little “ depression - downer “ SE that opiates always bring….. always. my friend Bussman, Urang on this group , took heavy opiates for two decades and they had their way with him …. He frequently got into a self destructive funk brought on by the depression that opiates bring… by the bucket loads. I always told him ……” you can’t make those kinds of decisions until you are cleaned up off opiates for at least 3-5 weeks and more is better. You don’t want to do something stupid and cause grief that you never would have if you were cleaned up and thinking clearly. “ ….. opiates will and do cause your thinking to change and muddle …. You can’t trust “ major decisions “ ripped on opiates …. You MUST clean up and see if you still feel the same … period.
On another note …your advice about “ use it or lose it “ is spot on …. I didn’t use much of my muscle structure and adt plus keto dieting rendered my major muscles nearly nonexistent. I completely lost the use of my left leg because of it and I’m now rehabbing myself with a treadmill and stationary bike and squats ….every day. Just a little exercise can show results pretty quickly. I have “ exactly “ the same sitting in the john problem as you do … like you I have to “ struggle “ there ( for the same reasons ) and it doesn’t take long before I’m squirming in discomfort trying to lessen the glutes discomfort. A cushion to lessen the discomfort is a great idea, thanks for sharing that tip. I ,for one , appreciate it a lot ….never crossed my mind … great idea buddy.
As usual, thanks so much for sharing Jim …. This hospice info is tremendously useful and brings up a lot of things for others here to read about and benefit from. Considering everything, you sound like you are doing pretty well … that’s a good thing.
Just say’in ❤️❤️❤️
Standard disclaimer: the views , perspectives and thoughts mentioned here are solely my own personal experience and not intended to substitute for professional medical advice or direction. Always consult your personal care medical team for their “ best source “ information and / or treatment.
Jim, for being on pain medications you are quite articulate. I know that your a very compassionate and caring person after reading your posts. I’m so sorry that this is happening to you. Thank you for sharing your story. God bless you.
Dear Jim, please know you are helping me prepare for my husband's journey. Thank you for being very articulate. Sending out a big hug to you and your family.
Thanks for the update. I am following you through your trials and not looking forward to my trip down the hospice lane... Know it will happen some day, but hope not for a while.
Thank you so much for posting this. Sometimes, it is easier forgiving other people than forgiving oneself. You deserve the lion's share of your compassion. It's impossible to not be grouchy when you are in pain. When I read stories about saintly hermits who live lives of deprivation in the wilderness, I wonder if they weren't really taking the easy path.
"No man is an island entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea... any man's death diminishes me, because I am involved in mankind. And therefore never send to know for whom the bell tolls; it tolls for thee."
You have a lot in common with Donne's thinking in thought and deed.
You know by writing this you are making it more apparent to those if us here who are of like mind....that in life when the downward spiral starts...and death be certain....we should be able to chose our exit ..... i am in awe of your courage....cancer sux.......
Great Post, Jim. Thanks for "telling us how it is" for you.
I've been on hospice now for about 60 days. The progressive weakness in my legs is a bummer for me. It is quite emotionally unnerving to feel getting ever closer to losing that capability. Sometimes when I just barely make it back to my couch/bed I just break down and have a short "ugly cry" for a few minutes, as I try to just "let it be" as my body and spirit slowly calm back down over several minutes.
I can also identify with sometimes saying things or acting in ways that can be hurtful, unkind, or just plain dumb. The worst is when I go over the line with my primary caregiver. Of course, we have decades of deep relationship behind us, and tons of loving experience over the 8+ years since I've had incurable cancer. But the realities of things that happen during times of transition, or during times of a failing body, or under dozens of other emotional/spiritual sequential assaults, or especially with increasing pain levels, can lead me way out on that "stupid limb", sometimes, too.
Charles, it sounds like you are writing from inside my head. Parallel experiences reinforce the validity of what I’m feeling but I’m so sorry that you have to experience it too.
My heartfelt prayers are with you...I pray that your pain is allievated soon. When I read your posts I think of my urologist who chose to take the possibility of me having cancer and try to make a joke out. Reading your posts this is no joke. I wish he had been more professional with me told how serious my situation could be instead of joking around how I would never have sex again and how ADT would turn me into a eunuch....Not the things you want to hear and that is why I delayed having a biopsy for 18 months...the end it was my own fault I waited to long but the guy was a jerk...don't see him anymore....
Sounds like a complete jerk. Glad you were able to get through your anger and find someone who would be more professional. On the flip side, I’ve had 18 pretty good years before getting to this stage. Some (much) of that longevity is because I was treating with stuff that didn’t even exist when I was diagnosed. Stick with it Roger. No telling what’s around the corner.
The urologist sounds very unprofessional. We had a terrible one was almost cruel the way he talked about the treatment - as if he enjoyed giving the bad news. Men who deserve compassion for the diagnosis certainly do not need urologists to be unprofessional and insensitive. We dropped the urologist as soon as we could. Even seeing him for the 2 minutes he might deign to give the appointment was more stressful than we could imagine.
Incredible Doc!! Remember, we have no way to know if a diagnosis 18 months earlier would have been any different and resulted in better long-term results..hopefully you did at least have a good 18 months...18 good months you may not have had if you had been treated earlier?
I've read that caffeine can help counter the depressive effects of opioids as well as help with pain relief. How I don't know. Maybe try caffeine pills? No-Doz? practicalpainmanagement.com...
Just throwing that out there. The constipation sucks - I guess you're trying stool softeners, laxatives (magnesium-based?), fiber pills? Opioids do the same thing to me (and everybody else), and if I have to take them I also take a stool softener or I regret it later.
I'm sorry you're enduring all this, and amazed at your fortitude, even if you don't see it as such. You're in a place that only humans get to, I guess, because we're just so self-aware of who we are and how we fit into the universe and of course of our own mortality. The other day I revisited a poem I've always loved - here's the final verses. I hope I'm not intruding or that I'm posting something somebody will flag as being inappropriate. The metaphor is old retired race horses and horse racing, but it's all about us - humans. I found it at a difficult time in my life when I lost my brother. Elegiac, yes, but in the last line, noble.
"And in the years that followed he would watch them in the backstretch or the far turnAt Santa Anita or Del Mar. Watch the way they made it all seem effortless,
Watch the way they were explosive & untiring.
And then watch the sun fail him again & slip from the world, & watch
The stands slowly empty. As if all moments came back to this one, inexplicably
To this one out of all he might have chosen—Heaven with ashes in its hair
And filling what were once its eyes—this one with its torn tickets
Littering the aisles & the soft racket the wind made. This one. Which was his.
And if the voice of a broken king were to come in the dusk & whisper
To the world, that grandstand with its thousands of empty seats,
Who among the numberless you have become desires this moment
Which comprehends nothing more than loss & fragility & the fleeing of flesh?
He would have to look up at quickening dark & say: Me. I do. It’s mine."
It is sad to read about the significant pain you are suffering from. Yet, I am full of admiration for your courage in the way you are facing it and writing about it. I am sure that people around you are not going to remember or hold against you the odd lapse from kindness given the heavy medication you are on. Please do not add to your pain by focusing on that. Praying that your medication will work or that they can find something else that will work for the pain. I hope that you can go out and about for a drive. Sending you love and light.
Good evening Jim - I just read your post and want to tell you it made me sad but also smile - because you are showing us all how to be human - despite your circumstances. You are a man of God and you have a gold heart. The world needs more human beings like you. I cannot do much to change your health - except maybe - just for an instant - make you smile because your words touched me. I send you love and best wishes - keep fighting - every day is a gift from God. Im with you all the way.
Heroes everywhere. Thank you for your raw account of your inner most feelings and experiences.
My heart tugged over your genuine angst over hurting ones you love. Speaking as a devoted loved one and witnessing as equally devoted loved ones, please know your apologies have not only been accepted a million times over, it was already understood before you spoke the words.
A slip of the tongue or a momentary lack of tact, doesn’t negate a lifetime of respect, love, and compassion. It doesn’t erase who and what you are and how you’ve strived to treat people.
The incidents obviously weigh heavy on your heart. The greatest gift you can give to those ‘you think’ you’ve so greatly offended/hurt is to, completely, forgive yourself.
I hope with all that I have that you find relief from your excruciating pain. As you continue on in the care of hospice, I hope they are able to find the magic pill or dose that alleviates your physical distress.
Thank you Jim. My blessings are with you. How wonderful that you have so many loved ones around you.
My heart goes out for you Jim, may God bless you and your pain. I pray for God to lift your pain. Jim, Continue to pray and ask for pain relief from God as well. At this point he is your help and ask him to help you in your recovery and attitude. I remember a family member that used to be the kindest soul on earth and at end of life he was grouchy, just remember ( and your family knows) this is not you. think on Heaven and its gloriousness, read some Psalms and keep your mind on our Savior, he loves you. God Bless Jim. Remember we are all your brothers and sisters and we all Love you too Jim! Take care my friend.
I assume you are being treated from your home, not in a hospice facility? If so, how often do they come to visit? Are you also using other ongoing home nursing care to help you out?
Sorry for asking these questions, but you have been very open about your experience. Thanks for sharing.
I am in home care hospice. Once a week a nurse visits and then consults with a physician on an plan changes. We also have a med tech who comes as needed. Every time they have done a method one increase someone calls in the morning to see how I am tolerating the increase. Keep hoping for the best my friend.
Jim, may the Lord give you comfort as you journey home. At 75, I have given many thoughts on my own journey. I am thinking that knowing that,I have given much thoughts about VSED and I think that it is probably my path during hospice so that I don’t keep my family in agony for a long time. As you, I want their thoughts of me in a positive way and not the burden of them seeing me suffering and bedridden for a long time. Please keep us updated as you possibly can thanks for sharing your journey.
Thank you Jim for your generosity sharing your experience. I take a sense of comfort and camaraderie from your post. I’ll add you to my prayer list for comfort and peace for body and soul. God bless you and your family.
Your chronicle is some of the most meaningful and powerful posts here. You are opening thought to finding grace from dealing with things that can't be changed. Thank you.
Regarding the constipation issue, my MO told me to take a regular Colace in the morning and another in the evening and to pair that with 8 ounces of prune juice in the AM. Works wonders. I am on Orgovyx and Solifenicin, both of which can and do cause intense constipation for me.
Thank you for this diary of what you are going through now. I'm so sorry that you have to but probably some of us reading this will be going to the same thing and it will make our path so much easier.. We all should just be very thankful to you. I will pray for you and give thanks for what a gallant service you are giving to the community.. Like you I do not want to be a jerk, like you my pastor is very important and I want to once more say thank you for providing a roadmap that some of us will have to follow some day.
Jim. You come come across as a great human being. Remember no one is perfect especially under your circumstances, so don't be too hard on your self. We all will be looking forward to your next post. May God bless!
Considering your post more personally, though I am not yet in your pajamas. What are your thoughts and feelings about saying goodbye to your loved ones and thanking them, acknowledging the gifts they have brought into your life? Seems more important to me than apologies and regret over that which is now largely out of your control. What is important to complete during this extremely difficult and painful process of diminishment and letting go of a life? One of my remembrances at this time is: “A life well lived is long enough.” (Richard Dreyfus in “The Astronaut “) with thoughts of kindness and support- Paul
Great question Mateo. (I hope first name is ok 🤪) I am fortunate to be part of a family that has a strong, strong belief in the promises of our savior and Lord Jesus Christ. Because of that foundational belief we are all comfortable that this is certainly not the end but the beginning. What is important to accomplish? Based on responses from these hospice posts I think it is important to continue as long as I can (and perhaps encourage my wife if I become unable to post - but Geri hates to post). Years ago there was a man in Kansas City named Dave who chronicled his journey. I found myself eagerly looking forward to reading his posts. Posts like being in the clinical trial for enzalutamide and other things that are standard of care. I wanted to know what was in store for me from a personal perspective not some clinical peer reviewed publication. I suppose you and others are a lot like me and want to know as well. If, through these posts, someone wants to explore Jesus Christ for His power to allow me to be comfortable about how this will turn out - all the better. Once again, thank you for your question and may God richly bless you.
Chronic constipation is no joke, particularly from opioids. Check with the docs, but Linzess comes in 3 “sizes”, 72, 140, 292. I reference the 292 to the “atomic bomb,” it should resolve your current issue. Take it first thing when you wake up, then eat something an hour later, in about 1/12 be close to the “water closet!”
Thank you for this post. Very timely for me. I am the sister and caretaker (sharing with his wife) of my brother. Short bio: Age 69, diagnosed at age 67 with Stage 4, PSA +1800, mets to bones/lymph nodes throughout body. Took one Lupron shot and made a difficult decision: I am living what life I have left without ADT Therapy/Chemo. Johns Hopkins, although strongly encouraged otherwise, supported his decision. Fast forward two years. They have been overall good to this point. He went on hospice care about 4 months ago. 30 mg of long acting morphine 3 x/day and 15 mg of short acting 4 x/day keeps him pretty much out of pain at this time. He is mobile in that he can get to the bathroom and short distances but that's about it. Last week he started complaining about the depression--being in a dark place. Very unlike him. He's got a lot of faith and is not afraid of dying. (Unlike me who is afraid of him dying.) Hospice prescribed Prosak and we started this week. I heard it takes a little while to kick in. He's currently forgotten about the depression as this week he has been suffering from severe nausea. Zofran not working. Trying Halperitol?? today. He wasn't eating a lot before the nausea but now he's basically on ginger ale and some crackers. Question: Do you think the nausea is coming from the cancer progression pushing on his stomach/organs?? He's also taking Gabapentin, Lactolose, Senna, and several others as needed. He recently came off of steroid - Dexamethazone. Any suggestions to help alleviate the nausea. He felt like vomiting last night but not a lot in his stomach. He is having some confusion, agitation, hallucinations. Yesterday, he said he thought he was going to die that day. Today he is feeling a little better. He has 4 children across the US and wants them there when he is passing. How do you do when to call them?? I know that may be a tough one to answer. This has been a journey and I feel blessed to have had this time with my brother.
Tough questions Norfolk. It sounds like he is further along than I am. I have not experienced the nausea that much so I don’t have any advice for you. I know that I certainly have put a lot of trust in my hospice team and it appears you have too and they have done a pretty good job for you so far. We don’t want to admit it but hospice is not designed to cure us. It is there to help us be as comfortable as possible. Each time I believe a course of treatment is not producing the results I desired I have to sit back and ask myself how bad I would be if hospice wasn’t able to provide any relief. My advice? Go with them, pray without ceasing and most importantly trust in the Lord. We also have four adult children. Two live in the same town of Medford Oregon and two live in Bend Oregon. That is very nice for us because it is easy for any of them to get here quickly (within three hours). My boys are well aware of what is going on and have been involved in all discussions about course of action while alive as well as when I die. Have faith and may God bless you richly.
I’m not currently a medical care professional and I’m offering this thought strictly as anecdotal but : if he’s is taking the opiates you mention , then make sure he takes them regularly and doesn’t allow himself periods where he “ comes down “ off them unplanned. One of the first symptoms to pop up will be nausea , heavy nausea possibly ….and … strong unpleasant mental experiences which can be aggravation, anger, surprisingly powerful panic attacks , fear, problems breathing …. If he wants to stop, he needs to “ wean off “ over a period of days , even weeks, take a little less for numerous consecutive days until he gets to a point where he can stop with few and light - tolerable quitting effects. For the panic attacks - fear issues, a benzo like xanax works wonders .
Just my thoughts on the subject , always refer to your medical care team for best source advice.
I just don't know what to say. I've read your last posts but I don't think I've really replied until now, because I didn't know what to say. Some of the replies here have been really heart wrenching and some have been heart lifting. But this is about you. And I don't know what to say. I can't joke myself out of this, or do a rah, rah you can do it. I can't say "Hang in there Jim!" I hope you are like me, and have a nice cozy warm bed at the end of the day. And don't trip over a cat in the middle of the night. Sorry, I couldn't resist.
I am surprised and indebted to you. Surprised cause with all that’s going on within you, you still manage to inform all of us on what’s going with you. Thanks 🙏
Indebted to you for all the wealth of knowledge you are sharing so strongly. Thanks 🙏
Take good care and my utmost of all good things to you.
I hope you can get out at night to drive around and look at the lovely holiday lights. Prayers for your new cushion to help with the pain. My dad was on a lot of pain meds and ate a cut up apple each day to help with constipation… God bless you 🙏💙
I read your post and I’m sending love and peace to you and to those that love you! Know that you are always doing the best that you can and if you could do better, you would. These are the golden words of compassion a la Matt Kahn!
To the Jerk,Oops I meant James...... Listen all of us and especially me are jerks from time to time. Actually my wife tells me that every time I beat her.... only thing is she's getting to like the beatings. Thank you for detailing your trials and tribulations in hospice, since we shall be in that position soon. What do I say to someone who is going through what you're going through. I wish I could lift your spirits and have you drink a bottle or two. Humor is my way of beating this monster who decided to take over my body. So when it's my turn to reach room temperature I will be cremated so that that bastard of a monster will also turn to ashes. I would like to recommend an old Stanley Kubrick movie "Paths of glory" which you might find very interesting and entertaining while you're bored lying in bed. As you struggle with some of you bodily functions why not add Prunes to you diet. Get some pitted ones and boil them with a slice of lemon and enjoy them (drink the juice). So James eh I mean Jerk please try to laugh and remember it's fun to laugh..... You may not believe this but everything we do is funny.....
Thanks John. Humor has always been an absolute must in how we deal with this. My wife and kids understand but it seems weird to my daughters in law. Just can’t believe we joke about the inevitable. They’re learning. Take care
Dear Precious Brother, You are such an inspiration. Your willingness to be candid, raw, funny, encouraging and kind does not surprise me. Those attributes I have seen in you all your life. However, as the older sis you also displayed an onery and mischievous rascal attitude very often! 😆 Do you remember when we were kids, we would do everything possible to scare one another? I think we liked the adrenaline rush. When you shared that you had prostrate cancer with the family, I was scared. This “scare” didn’t have the same thrill that we experienced as kids. It was a sad “scare”. When you love and care for someone dearly you never want them and their cherished family to go through a cancer journey. When I first heard the news, yes there was fear. But, almost immediately the Holy Spirit reminded me of my life verse. Philippians 4:6-8, “Be anxious for nothing but through prayer and supplication with thanksgiving let your request be known to God and the peace of God which surpasses all understanding will guard your heart and mind through Christ Jesus. Finally whatever things are true whatever things are noble whatever things are just whatever things are pure whatever things are lovely whatever things are of good report if there is any virtue and if there is any praise worthy meditate on these.” 25 years ago almost to the day I was in surgery to have a brain tumor removed. These verses gave me peace reminding me our Lord is in control no matter the outcome. Peace you can’t explain to someone.❤️ I treasure that the scriptures tell us this place on Earth is not our home. I have peace knowing that we (you and I) will always be in our forever home with our Lord. Whenever His timing takes place. I love you dearly brother. Please continue to share your journey on this space for as long as you are able. Your thoughts are so valuable to those on a similar path.
Well folks, may I introduce my oldest sister. I shared this site with them a couple of weeks ago and exclaimed that it would be my primary site where people in my situation may find useful information. First and foremost, it’s “prostate cancer” not “prostrate cancer.” She’s a pretty smart cookie so she’ll figure it out quickly. I have four sisters a mom and a step mom I will not be surprised if too much info is reviewed. I should have demanded right of first refusal, but I did not. Please pray for me. So far this week there have been many changes which I hope to share on Friday God willing. Till then, may God bless each and every one of you.
Very timely for me, Jim. Thanks for sharing, and I appreciate everyone's thoughts. Gotta start visiting this site more often.
While PCa looks like it isn't going to get me, Sarcoma very likely will, and Hospice isn't far off. Knowing that sure helps focus and clarify what is really important. For me, family, love, truth and kindness. You have it together Jim, and write quite eloquently. I hope to follow your example. I'm still finding it difficult to tolerate BS, and there's a lot of it around. But I'm trying for be more tolerant, graceful and understanding.
Live your lives' well, my friends. Have few regrets, and find as much joy as possible. Our time here goes by very quickly, and in the end, we all pass on. In the meantime, love, be honest with yourselves, and be well lived.
Not surprisingly, scientists have discovered that while anger and hatred eat into our immune systems, warm-heartedness and compassion are good for our health....and for our souls.
I can't add much more than what others have said, but thank you for the insight; it means so much. Sending positive thoughts and prayers for a peaceful transition.
I don't go on the site very often either but I am glad I did tonight. I am walking past the graveyard myself for the last 21 years. I really don't know why I am still here as I was never curative after the Radical Prostatectomy . I am 70 now and here in Canada I don't matter anymore. I feel for you brother and I will say a prayer for you tonight.May God bless.
Hey Kenner, thanks for chiming in. Does that mean your med system will stop paying for curative care? That does not sound too great. If you have the money could you still petition the health ministry for a waiver? I’m not in the greatest of moods tonight but this is just nuts. Get us cured and get us back out there raising our children and grandchildren.
No such thing as a waiver here. I will search out my options after Christmas. Universal health care is not the be all end all. Remember this, the older we are here the less treatment we get.
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Is hospice care what we need?
Moving on with hospice care.
Entered Hospice at age 45. 21 months after diagnosis.
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