since I am so afraid to die, I am trying to reduce my fear by understanding and preparing for it, right now I have bone mets all over my body and my chemo will not be working for me someday, so what is hospice like for prostate cancer? do we just stay all jacked up on morphine and other painkiller drugs while the cancer eats my organs?
I just don't want to suffer too much (I already have suffered greatly)
any thoughts on that? I hope you don't find this post in bad taste, I have been fighting this for six years now and may only have a few years left.
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MrJack
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Jack, I think you should not be thinking of that now, try to enjoy the days you have. A wise man told me early on when I was thinking the same thing " If we are worried about dying , we can not live anymore"
Nice writing ,live for the moment and ofcourse some day all we going to die but our souls live in our children and so on, by the way you Dans59 i like to dance and in this age i usually dans 2 times a month ,have a good time.
Jack, I've had similar thoughts before, particularly at first diagnosis, or when having to go on to another treatment. But, I could only worry and dwell on the hypothetical Fear for so long. Then it was getting back to "living" instead of "dying" each day.
If you do want to learn and prepare for some of these end of life issues, these are some good places to explore, as you continue to talk about these fears and issues and your positive wishes of what You want toward life's end with your doctors and family members.
"Dying from Prostate Cancer" at the Prostate Cancer UK website.
Hello Jack, I just want to say that having looked after my husband until he died we never worried about what the end stage was going to be like and instead focused on living each day enjoying doing whatever he could cope with. The hormone treatment made him tired but we worked round that.
His favourite saying to people was "I still have both feet on the planet" and that's something I keep in mind now I am alone. Please read the links that have been posted here and keep positive and enjoy doing all that you can while you can.
Jackie what a lovely way to live and love with your man. I have tears hoping my lady can find a way to live me in such a full dimension. Much love and best thoughts. David.
Your post was so touching. My husband was recently diagnosed with late stage prostate cancer and its important to remember that all any of us have is today so try to live it the best way we can
Mr Jack I can't answer your question yet but if I do die from PCa I will find some way to let you know. However as I prefer to live rather than worry about what may eventually take me you may have to wait a long time? If you think my response is flippant my father died in 1950 when I was 4. I have lived with the 'concept' of death since then. My 30 plus bone mets now down to 1. 10 cycles chemo no probs. PSA from 200 to 0.030. No pains, no probs. Conspired to break 2 ribs and fracture neck vertebrae last week! Tripped over my dog. If something's coming for you it will probably be left field! Good luck and please don't worry. You have a long time to wait. David
That's not something that I think about regularly so, not sure how exactly to answer.
I had an uncle die from prostate cancer, father (& brother-in-law) from lung cancer, cousin from ovarian cancer, aunt & grandmother from uterine cancer, aunt from skin cancer,...the list goes on. Just two weeks ago a brother-in-law died of a brain tumor. All eventually were "jacked up on morphine...."
Still, life is precious. All of them clung to life as long as possible.
Many decades ago as part of my faith (and long before I was diagnosed with prostate cancer), I came to accept the fact that I was mortal and my time here was limited. As I accept the death of those who I love and come to terms with my grief from those losses - and will accept my own when the time comes - I will just as strongly cling to life, embrace it, and live it to its fullest, whatever comes my way.
Quality of life is important and each of us must decide for ourselves where that threshold is. But, I would choose life, for as long as the Creator has in store for me.
Jack we are all going to die from something. Granted, those of us with PCA seem to have a more defined ticket, but many people without it and without cancer die every minute of every day. Preparation is fine as long as the preparation does not consume you. I have found that when I get so concerned about myself, I look for someone else or something else to serve with my skills and talents. Even if my energy is low, i can still love on someone else by helping them or an organization that needs help.
I am a Christian. I find great comfort in knowing where I am going. If you do not mind, i urge you to pick up a Bible and start reading. There is great comfort and help in this book. I also would ask that you seriously consider letting Jesus into your heart.
Whether you follow my advice on Jesus or not, please consider some of your time be focused on others. You will forget for at least a little while about your situation and you will bring comfort and help to someone else that desparately needs your unique skills, experience and assistance.
My friend, some day all of us have to die. For one reason or the other. When? No one knows exactly. Death is so inevitable. We are living amidst death. This is common to all living beings. PCa makes no difference to the situation. If you have a decease, you have to fight and control. Don't have fear and don't lose hopes. The positive thoughts embedded in each of the above replies given to you by our brothers in the group are amazingly supportive of holding to the precious life and never to think of an end unnecessarily. "Pain" you deal with it as a separate element. Men are too scared of pain because they have no ability to get pregnant and experience what it is in childbirth ! Our mothers are much braver than us. Think of them and summon more courage.
All our prayers are with you for your mental relief, painless and long survival.
Jack, My Dad died of prostate cancer, and there is no question in my mind that he was hurting inside in many ways. His whole career was in life insurance, so sure he knew what to expect but didn't dwell on it. But then, it was 1993, and the medical technology for PCa was in the dark ages back then. The folks from hospice were excellent, visiting him at home and helping Mother learn to care for him. Heck, the nurse even kept coming after he out-lived the allotted number of days in their service contract. Others tell me Hospice continues as a positive factor in their lives. Like others here have suggested for you, Dad kept his mind and body as active as he could. He was 89, and I fondly recall a visit just before he died. He loved and lived by the ocean, so asked to take a ride (my truck) to the beach to see the ocean, he smelled the salt air, told fishing tales, but his eyes and smiles followed the bikinis running about. Live! No fear!!!
Absolutely valid question! Go to Prostate Cancer Support Group on Facebook. Check out goodreads for books on Dying.
You know what I think about Jack? I think about my 41 year old father who was given six months, when a brain tumor was found. I remember how the seizures would leave him debilitated. From his first seizure til his death, took 18 months. From the epitome of health to drowning in his own fluids, just like that. I think about how strong he was when he was nothing more than a wisp of a man. He had every right, and many will agree, to take his own life, but he made a promise to my mom that that wouldn't happen. He was too proud. Wow, it just so happens it was 41 years ago, I was 17. I missed him dearly.
My father chewed tobacco and died of mouth and throats cancer ( and probably more, I was too young to be told)
His biggest fear was not death itself, but leaving mom and us behind. How would we make it without his leadership. We did. My brothers and sister eventually did well in life.
I think that is a big part of the fear, leaving those you love and protect behind. people are resilient and resourceful. Their life will go on. Albeit, with a hole in their heart ( speaking for me) that time doesn't heal. It dims the memories a little( self-defense?). Those you love left behind will be fine.
But really who knows when that will happen. To the OP, your an individual not a statistic. You may be around for a long long time
And I'm so sorry for what you and your family and father went through Joe
I respect your question. In 2012, our friend John Arnold narrated his last days. When he could no longer write himself, his wife a Jeanne took over for him. His last night was peaceful, though there was certainly struggle earlier. If you go to malecare.com and search his name, you should find his story.
I hope the end is years away for you--and all of us--but I found comfort in John's writing. Until the time comes, don't postpone joy.
John was such a great Man ,an he did so much for us. Who knew he was responsible for the modern day food bank in this country, and all he did to feed the poor.
I don't consider your remark negative at all. But I do consider that suicide is the easy way out. I once had an acqaintance who was a very frail man. He was 70ish, but looked like 90ish, that type. He was adamant about not going back into the hospital, ever again. So, thinking solely of himself, and not at all about the friends and family he would hurt, he took a utility knife to his wrists. When it didn't work he slit one side of his throat and missed the aorta, which was on the other side. Then he hit that, and bled out in his workshop.
Not me, not ever. I like to think that I've come to terms with my mortality. At 58, I'm still relatively young, and I still have faith that I can beat this thing.
Read my post title "As it stands". According to my trusted physician, as long as you stay in the fight, you don't die. Even if that is way wrong, there is no harm in believing it. Compare it to Pascal's Wager (see Google). I have gone from dreading my demise to telling my wife to start looking for house plans.
Zet, I know your heart is in the right place, but this seems like a fucked up answer to give a man who's worried about his mortality. Just my humble opinion.
For me, that would never be an option. It's God's decision when I leave this mortal coil and not mine to appropriate.
I have had Stage 4 Aggressive PCA for 5 years now. Standard treatments and clinical trials no longer work. I also just completed three weeks of Radiation to my spine for Mets and vetebrate nerve canal compression. I also now have large Liver metastases. I have had significant nausea, vomiting, spine pain and fatigue for three months. My QoL has been poor. I start Chemo on Tuesday, if the nausea continues, there will be no more precious days left to count. Fear, unrealistic hope and religion are for those unable to cope with reality. Am I disappointed with hand I have been dealt, of course I am. But I don't intend to suffer for the sake of suffering.
I know this is easy for me to say and not so easy for you to do "but get some humor in your life and forget about dying". As for me I'm going to jump in a huge vat of Lanolin and soften to death".
Mrjack - I feel for you in this dark place. I hope that you have a relationship with God. I think everyone fears death - but I think of it sometimes in this way. I have been granted time to have a relationship with God, my husband, my children, family and friends. I have had time to "make things right." Say the important things that I want everyone to know. I haven't been young or unprepared dying suddenly in an accident. I've had time to "ask for forgiveness". It is hard to sometimes get past all the disappointments, setbacks, pain, appointments...the treatments that didn't work - the hormones, the chemos, etc. I hope that as you post prayers for others on this site that you take time, those quiet moments and believe when God said - be still and know that I am. The older one gets the more death becomes part of your life. I pray for you, Mrjack. You are important to everyone on this site and everyone in your life...you are loved!
My husband had the same questions. He's a medical person, and he just wanted to know this as part of the big picture. And it was very frustrating! No one would tell him how his body might eventually shut down, and research did not yield anything either. We eventually got a sort of general answer of organ failure, or more likely, with a weakened immune system and just being generally weakened, something like pneumonia or an infection could be a culprit. I'm not sure of your reasons for wanting to know, but you've got several different response tracks here -- so hopefully one of them helps you! This is the more clinical, information-focused answer.
If you have not done so already, you might look into getting things in order. Be sure you have an Advanced Directive for medical care with a clearly indicated person who has medical power of attorney and knows your wishes. Also a will. Our lawyer also recommended that we could write a letter expressing other wishes and desires - stuff that doesn't go in a will. (We both did this when my husband got diagnosed). This can be a letter that you seal and ask a person or a couple of persons *not* to open until you're gone. We went through a lot of this on initial diagnosis. We did not think of it this way, but in retrospect, maybe it gave us a sense of control in a wildly out of control situation.
My husband is 3 years into his fight against aggressive CRPCa (stage IV with distant mets at diagnosis), and doing pretty well thanks to Xtandi, and probably the other treatments he went through rapidly (that didn't seem to work but ultimately maybe helped). Still, he wants to talk about death now and again, and so we do. I reassure him that I know his wishes and will follow them. We will revisit our wills this year; we reviewed his medical directive. Also, he is going to contact hospice now to see if they will come talk to us. We are probably/hopefully quite a ways away from hospice care, but we are hoping that they might just talk to us about what it's all about. We don't have any experience through other loved ones, so it's really new to us. I'll let you know if they were willing to do that, so it might be worth asking where you are. You might also talk to a palliative care specialist -- a doctor who specializes in pain management, and will likely be involved in your care as pain worsens. And if your pain is not well controlled now, maybe it's worth talking to one now?
Lastly -- here in Hawai`i we have a thing called a POLST (can't recall the acronym meaning now) -- but it is a document a little more specific than the Advanced Medical Directive. We were told, you can keep it "on the refrigerator" and if an ambulance is called or something like that, you can show this document to express the patient's wishes. It is something that the patient reviews with his/her doctor (who signs it), but it prevents a situation of receiving life-saving measures before the medical staff knows about the advanced directive. Again, something for peace of mind IF something like that gives you peace of mind.
As everyone else says, it's most important to enjoy living each day and being as happy as you can with the people you care about and the things that bring you joy.
Mrjack - I hope that my previous post was not too preach(y). I just wanted you to know what helps me and maybe could help you, too. But the last few weeks, Bob was in the hospital with a UTI and bladder infection - Sepsis. Then so weak, he went to a rehab/nursing home for ten days. Back home one day and chemo the next. I worry about dying or getting sick too and not being able to take care of him and/or me. His numbers were trending down but this last time going up again. Jevtana and carboplatin - failing all treatments so far after about 4 chemos. Try to follow the excellent advice on this site and so will I. Keeping you in my prayers...
I'm in for 10 now. Chemo is coming soon. I'm not afraid of dying but I hate the thought of leaving my wife. Iam a born again Christian. My faith tells me there is life after this life. Open your heart and let God in. He will relieve your fears. When everything becomes to much I give it to God and do my best not to think about. Then I try to stay busy and keep my mind off of it. Pain Meds help but there is a limit to how much you can take.
I do agree that we need to enjoy every moment of this precious life together with our family and friends. However, even though my husband and I try our best to do exactly that, at times we think about and talk about what the end may be like one day. We consider this not to be a gloomy outlook or a depressed way of looking at things. Rather, the prostate cancer has brought the thoughts about how precious life is and how inevitable the end is to our minds a lot more. We hope that he won't suffer pain, and we know that there is paliative care which, hopefully, if it comes to this, will be able to take care of the pain. And we have spoken at length about what I am going to do when he is gone as when it happens I may not be in a position to think straight for a while. Yes, it hurts to think about these things, but it is a sign of strength and love if we can do it!
I am guessing most of us have dealt with this question. Being Stage 4 Aggressive, I get sympathetic comments; (not to worry) I am relying on my living experience. I was a hospice volunteer for 15 years and health mentor for patients with HIV/AIDS for 25 years. My observation is that dying is easy compared to living with a critical illness. Spend your energy on today. Also witnessed over and over that we humans enter that end time gracefully most of the time. Our bodies are tuned to the natural process of dying if we do not overwhelm it with mental attacks. Try to be in harmony with your body: live in peace and die in peace. I have made the preparations for material needs and that gave me immediate satisfying peace. I now focus on the beauty of each day as it is presented and look forward with curiosity for the leap into eternity. Blessings to you now and all your days.
JB, my husband took oxycontin in the end for any pain he had, along with Cannabis oil and extra strenth tylenol(which ultimately caused liver failure they think and his death). He refused hospice and I agreed with him on that. He was alert and talking one day and died in his sleep. He told me two days before he died that he would be dead in two days. I thought he was just depressed but it turns out he knew better than the home car nurse who was there the day before he died. We were not prepared for that because the home health care people had talked to me and told me he would just start sleeping more and not wanting food. That was how the three people I knew who were on hospice went. Hospice gave them so much methadone that they just slept and didn't eat or drink and its usually a few days at best. If and when that time comes, don't fear it because if you chose hospice-they do what they can to make it quick.
Charlean
in reply to
two other situations.
one is morphine for bone pain, and you finally dont wake up.
the other, much less common i imagine, is that your bones fill up with cancer (a super scan) and you cant make blood. anemia and fatigue.
I am impressed with so many good compassionate responses in reply to you about death and dying.
Having worked for many years with persons with HIV/AIDS i have known many who died at a young age in their 30’s and 40’s. I was able to listen to where some of them were at… It was my “gift” for some…
Now at 71 other people are offering this “gift” to me!
Active listening can be very “healing”! Understandably not necessarily a cure!
(This year i was told of a recurrence and now on ADT…was first diagnosed and treated in 2004-5 at 54).
As many have said above, it is in living in the “present” (i.e. in the Now) that is important. Living “in the “present” can be a “gift” to both yourself and others! Continuing to learn to be more “gracious” and “accepting” of myself and others offers me a whole different perspective in seeing the “life around me”!
The best to you as you continue discovering what works best for you in your path forward…
hey guys, don't give up！life is so beautiful. If you have the prostatitis, you should actively find some treatments, whether antibotic medicine or natural medicine, which will help you. Although life sometimes have some difficult, usually life have some surprises are waiting for you. Don't be afraid, you will defeat the diseases.
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