At 22 months into stage 4 with Mets. I thought I was doing ok mentally, feeling pretty good as well. Wednesday I went to see my father in law ,we were not close ,in fact I didn’t know he had prostate cancer. 7 years ago he had his prostate remove and went to 6 month checkups. No radiation or chemo. Fast forward to a week ago Wednesday he had not been feeling well so went in for a ct scan. Cancer throughout his body except bones. Wednesday I looked in his eyes,and saw him try to talk ,I’m ashamed to say I couldn’t handle it and left the room. 6 hours later he died. Can’t explain how this has made me feel , I’m sorry to write such a downer of a note but I have a knot in my stomach and in my throat that won’t go away. Scared the stuff out of me .
Witnessing the death of a relative - Advanced Prostate...
Witnessing the death of a relative
cancer is an sob..one day you don't feel good and doc orders a scan and you light up like a christmas tree but by the time symptoms appear it is usually to late...a friend of my wife died 12 days after scan...another one 1 day after chemo...like my doc said "if you long enough you will die from PCa "...he did not say how long ....right now my best friend is a bottle of Xtandi
Yep on Xtandi plus monthly shots of eligard and Xgeva. Have to fight the battle.
What is eligard? Joe takes xtandi daily (just started a month ago), Lupron every 3 months and Xgeva every month. Never heard of eligard though...
The doc changed me from lupron to eligard. Said it was about the same stuff. Not sure but the hot flashes are about the same, they give the injection in your belly instead of your butt. Oh and it smarts pretty good for just a little while instead of being a pain in the butt for a week 😜😜😜😜
My hot flashes on Lupron stopped when my RO at Dattoli put me on Estradiol. Haven't had one since. However, Lupron and then Zoladex gave me a horrific allergy; couldn't help scratching myself bloody from the hives and rashes. Antihistamine fatigue on top of ADT fatigue....great. After switching to Trelstar 3 month shots, minimal allergy issues, Shots in hip hurt about half the time. All other miserable ADT symptoms continue....16 months now, but PSA and T are at nadir, no mets in scans at this point. In response to my plea for help with the cognitive and physio deficits, Dattoli suggested 800mg creatine twice a day to help with cognitive issues, be careful about nutrition, and to push myself to exercise regularly and strenuously, especially when I really don't feel like it, to help with energy. Having a history of issues with dopamine-deficiency related depression and ADD, my doc prescribed Vavance 10mg, as an off-label use for its dopamine facilitation, which acts to address both problems. Seems to be helping somewhat (ANY relief is welcome) It's hard to tell for certain how much help these offer when the fatigue and brain fog come and go on the bastard monster's timetable.
My Mayo MO switched me from Lupron to Eligard 2 years ago. It’s essentially the same drug. Both have 6 month doses. They gave me the Lupron in the ample fat in my abdomen, but was more painful, and left a bump (although temporary for about a week) that hurt when my belt rubbed against it. I get the Eligard in my butt (also amply cushioned). It is less painful. Works just as well. My hot flashes have been much less intense and much more tolerable, but I’m not sure I can attribute that to the Eligard.
Eligard and Lupron as well as Trelstar are basically the same. I was switched from Trelstar to Eligard because the former was supposed to be having injector malfunctions. I later heard that Eligard is half the cost...which is a more likely reason.
Eligard is a less expensive version on leuprolide acetate. (Lupron).
It does the exact same thing as Lupron, the difference is in where it's injected. One goes into muscle the other into fat (Eligard, I think)
The eligard is a little rough on us guys that dont have any belly fat 😜😜😜. Just saying
At last you’ve got a best friend and life to live.. Mine is Tak-700 .. the friends that we’ve made? The gator never sleeps....
it's been the same for centuries...it's the "to be or not to be" question. In the end "after the slings and arrows of life's outrageous fortunes"...we just don't know ...
and think...
"But that the dread of something after death,
The undiscovere'd country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?"
**on a personal note which might add some positive light on the subject.
I had a couple that my partner and I (me especially) were friends with for a long time back when everyone was dying from AIDS. One of the two(my best friend) and I traveled and did lots together and were like the brothers we never had. When his partner got sick I went over every day after work and either made dinner there and my partner joined us...Or, if Paul was feeling well enough, we all went out for dinner. Then Paul died. Then with Ed left...we became even closer...At the very end...I was going every day and helping with "stuff" in the mornings and seeing him before work around 9 am every day. He had a live in caregiver.
Suddenly one morning I felt this strange push from inside and I did NOT go to his house and instead went to Miami Beach to a famous nude beach that Ed had loved called Haulover. I wasn't fond of the beach really...but I was "pulled there". I stripped went into the water and while standing thigh deep I looked up and saw a transparent vision in light of Ed...and he was glowing with a message of "it's all good". When I got back to my car I had messages telling me the news and asking "where was I?". This visit, which ...when I talk about sounds unreal... still helps me realize that...."it's all good". We were so close, I still want to call his phone number every day (this has been almost 30 years)...757-4347....
My father when he died according to the nurse and my sister and my neighbor...glowed with light and smiled. I wasn't there....was on the way and missed it...but they made me feel really good about it.
That Said...let's "pull up our pants" and get to work and live, live, L I V E ...as long as we can ! ! !
p.s. my Friend Ed used to always quote his father's favorite quote..."I'm going to LIVE until I die".
That's deep stuff greatjohn
I have had some strange things like this happen but I, like most men, do not share them for fear of looking stupid. Not sure where this leaves my beliefs either. I think Omar Khayyam knew something, a thousand years ago. I sure as hell don't.
Or pull down our pants and live, live, live. 20 yrs ago 2months after my dad died , he came to me in a dream cloaked in white and said to me “ I am OK. That was such a great feeling and to this day I feel that he is OK.. a great relief to me still.. My father will always live inside of me ... as will anyone that we truely love, that doesn’t change when they shuffle of this mortal coil. The flesh is weak . I believe the spirit lives on... Miami is Hot... party town , I like the keys breeze andspearfishing and eating hog snapper, delicious along with a little real key lime pie... take care GJ...
Thanks for your story from "the twilight zone"...like mine...yours has brought you understanding.
I once had a Rabbi that ate at a bagel restaurant I ate in daily come over and ask to join me. I had noticed him and nodded a few times over the months. He said..."I want to ask you a question." I said "Okay"...he then asked "Have you ever had a spirit come to you after death?" to which I almost fainted and asked him "why, do you ask"...and he just said..."I just can see it in your aura (or something like that)". I told him my story. He said, "I just knew it!" ~~there are truly some things in this world that are NOT OF THIS world. My Life has been interesting and it still is! I am definitely a believer in something "more" than this.....
That’s step one. We humans surely can’t be “IT”! Faith can not be explained scientifically only poo pooed.... I believe love is the only thing that overcomes all. We know fear and hatred Are destructive and lead to death of spirit. Love heals and cures even a broken spirit . Find love , find hope and get answers. I don’t care if you love rap music or dog,cats, snakes , old people, kids, self , love life. I’ve met fantastic people here and in my new life with the beast.. We also find out who is really there for us. Strength in numbers and commoraderie.. Take care big guy..
Ya know I had my Grandpa visit me a year after he died. In the dream I was sitting in the kitchen of the first home I remember him living in. I am aware in the dream that it is a dream, and as I look down I see the plastic fake vomit he used to put on the floor as a joke. I think to myself how I had forgotten what a joke he is, when he walks into the kitchen.
I lost it, I'm weeping and flat out balling my eyes out. I run to him and hug him, and say "Pop JC, you can't be here, you're dead!" He looked into my eyes and replied "Son, It takes more than a little thing like death to keep me away from you"
It was real. I don't care what anyone says. Since then many of my relatives have come to me in dreams. They are around us all the time.
That is awesome.. you are tapped into your relatives.. that is love..
This is Joe’s wife...I usually just stalk this page 😬 but I feel compelled to share after reading this... I was an ER social worker in a pediatric level 1 trauma center for 7 years. After a one year break I’m back in the same hospital doing Pastoral Care. I’ve been present at the deaths of countless children, and in the last several years my uncle (cancer) and both of my grandparents. Every death experience is different- some traumatic and some truly beautiful. Most of the time the patient isn’t conscious or is barely so, and is given plenty of medication to ensure they aren’t feeling pain or anxiety. Some people (like me) feel drawn towards this work and others run from it. I think, particularly with adults, so much depends on your attitude towards death...acceptance and making some sort of peace with it- even those who fight till the end. It’s also why it’s important to have advanced directives in place and to talk to your relatives about the kind of experience you want to have. You have the ability to have a lot of control over that. I hope it is many, many, many years away for you, my husband, and all who are here and still fighting the good fight. Nonetheless, in cancer (and just day to day life) things can change in a heartbeat so to have things thought about, planned and shared is a gift to yourself and those who love and surround you. There is such a thing as a “good death” and I am blessed to have been present and witnessed many of these. In spite of all above- sometimes it just hits too close to home and perhaps that was what it was like for you witnessing your father in law dying from a disease that you have. After all this time, I saw a patient a few weeks ago dying of cancer, with the same bleeding syndrome my husband had last summer. I had to leave the room and I just lost it. We are human. Give yourself a break, certainly don’t feel ashamed, and perhaps the gift given here is the opportunity for awareness of your own fears. Sorry for such a long response but maybe some of it will be helpful. Hugs and prayers, Katy
Thank you for your words.
Thank you for not just stalking.. God bless you ! A author wrote” the meaning of life is that it ends” a little dismal . I’d take it a little further and say “ Life is short, don’t waste it” My point is .. every living being will perish . The most common fear is fear of death.. Fear is what strangles people while they are still alive. Thank you for your wonderful insight..
Within the last three months of my last scan, I developed numerous lesions on my liver as well as new numerous lymph node spots. These were clear three months ago. Had to stop all current treatment and in three weeks start a new clinical trial. Bottom line, with cancer until it's in complete remission, you just don't know. Thank god for this site. Sorry for your family's loss. But we're all here to support you.
Ralph
My doctor won’t us the word remission. Hang in there when you lose a battle you just change the offense and try again
I would love to use that word but who wants to ginxs their self? our tempt fate with a disease with no known cure ...only with gods will can someone overcome this deadly foe.. everyday is not a given , it’s a gift..
You father in law sounds like a total bad ass. I hope to be just like him. Work and do your best as long as you can. Die in your boots.
Yes Jim. I get up every morning and kick the cats pet the dog, I am lucky I bought a old quarry before this happened. So every day I go out and start the old dozer and mindlessly work on reclaiming the mess and make it a Little prettier for my kids and grandkids. Takes my mind off everything. Fight the good fight
What type of quarry?
Old gravel quarry, have 129 acres of gravel,rock,wilderness and critters. Luck enough to have an old dozer to go out and start the reclaiming. Plus building roads for the grandkids to 4 wheel on. Right now have built 5 miles of roads removed 400 cedars, and reclaimed 10 acres with top soil to plant grass. Had hoped it was a 30 year project but may have to hurry 😜😜😜
TOTALLY AWESOME!!!!
Stay strong brother,gods speed and blessings
I love the philosophical/spiritual meanderings of this thread. I am reminded of an amazing audio book I have been listening to which is rocking my world... "Die Wise" by Stephen Jenkinson: read by the author. He is an amazing and very lyrical/poetic storyteller who has worked extensively with the dying and pondered the demands of this process that equalizes us all, and can bring us all together if we recognize the calling.
Tsk-Druk, I love Stephen Jenkinson. I went to see him. I sat that weekend listening with water pouring out of my eyes hearing what felt like Truth to me. He’s helped me immeasurably.
On the other hand, my husband doesn’t want to read or hear his talks. My husband’s path is very different from mine. I’ve lived with death and dying very early. It seems I’m built for this side of life. My husband is staying true to what is right for him. He is not thinking about dying, and who am I to impose my way on him. In fact, like the post writer, he probably would have had to leave the room also. No judgment, no fault,
If you get an opportunity watch Stephen’s 3 day workshop in Maui.
This is such a deeply moving post Thank you all
I’m so glad that I’ve come back to this group. My heart broke 11 years ago. My broken heart has gifted me with a deeper compassion and humility, also a real acknowledgement for all of our perspectives.
I’ve been strengthened by our diversity.
Well said. No judgement, no fault. ❤️
Genie... I'm so happy to hear from someone who appreciates the challenging and sometimes counterintuitive wisdom of Stephen Jenkinson! I have found his questioning to be profoundly liberating in my own experience. I imagine that even if your husband has no interest, you both benefit from your engagement with Stephen's approach to the question of dying well.
He speaks to me. He inspires me.. My husband and I may have different approaches to life.. they aren't in-congruent..
We connect and bring balance to both sides of us...
I share the profound liberation, as you say.... thanks... yes, I had to respond because I know no one else who speaks about him..
His use of the origin of words through etymology books... the real meaning of words allows me to be free. The real origin and meanings so resonate and become my wisdom teachers.
Uplifting. Genie-Paul , we all stay true to our nature until the end. They say that our basic character is formed by the time that we are 4-5 years old. I believe that. no person can change another without them wanting to change themselves. We can only change ourselves if we care to. Older we get the harder it is to change. Don’t ever change your loving spirit. Yo7 help us all. Thanks.
Thanks for the book tip.. I will read it .. Thank you... most of us humans walk around in a bubble until we face death.. my eyes are more open than ever to both the pain and suffering and the beauty in the world....don’t have all of the answers but gotta start by gratitude. Peace
Jenkinson pops the bubble, no doubt. FYI... It's a long and meandering, deeply philosophical tome; an invitation to inquiry that turns some of our given assumptions completely upside down, which can even be a bit disorienting. I digested it slowly over time and found it absolutely worth the real effort that was demanded by it. It changed my relationship to and perspective on my own situation. Good luck and godspeed!
Having held my father in my arms as he died of a heart attack many years ago, the sight of death has been with me since the age of 15. It passed out of my mind until 6 yeas later when my mother died of stomach cancer. That too greatly affected me, in fact I lost 52 lbs in weight over 3 months. Again I came to terms with it and when my grandmother died a few years later, it didn’t affect me anywhere nearly as much.
Skip forward around 50 years, and I’m diagnosed with terminal prostate cancer. I now find it nearly impossible to attend funerals, and when my dog died of cancer in front of my eyes, again it greatly affected me, despite the passing of the years.
I think it’s the knowledge of my own impending demise that influences my emotions so greatly, however I don’t live my life under that cloud. It won’t break me, I won’t surrender to depressing thoughts, I enjoy my life to the full. In times of need I boost my spirits by reading the Desiderata.
What will be, will be, there may be a taxi or a car hurtling around the corner just waiting to take me off this mortal coil.
TommyTV, that’s one big skip =50 yrs, how the time flies when we’re having fun.. I am with you , never liked funerals , burn me and shoot me out of a canon when my time comes .. in the mean time live in the moment , the future? What’s that? No promises for any of us. Keep trucking and don’t look back. I worked pretty hard to create this baD chemistry in my life Plus a PC family history , Now pc is my baby, I want cure it with love and heal myself with good things.
Yes I know. My mom was in a mental hospital when I was 9 ,the picture of the wild woman screaming out the window to us in the parking lot has stayed with me since then . Life has a way of dealing a rotten set of cards when you don’t need it. Hang in there. Fight the good fight
Heavy duty stuff Amigo , especially for a nine year old. Wow.. what happens in childhood forms our outlook on life.
I must post this video again:
youtube.com/watch?v=LCRZZC-...
Good Luck and Good Health.
j-o-h-n Saturday 05/26/2018 11:06 AM EDT
Keep on fighting but never forget why you're fighting. All good Americans go to Paris when they die, so I'll see y'all in Paris.
I am Waiting for my time to come and I realize that everything that is alive will die. In order to move to the next plane or existence we have to shed that mortal part of us .
Knowing what to say to a person who is about to make that transition is not easy; sometimes the mind just goes blank. Some people are better at it than others.
Don't worry about it. In the end,all will be forgiven.
I have known at least 4 men with advanced prostate cancer who have died of advanced disease or complications within the last year. I met them all in local area prostate cancer support groups, and we all shared a diagnosis of very metastatic prostate cancer that had spread to bones and lymph nodes. I got to know them, sometimes their caregivers, visited some in hospital toward the very end, and attended some of their funerals. All 4 of them burned through treatments and died before me, despite the fact that I started out 4 1/2 years ago with a PSA of 5,006 and a bone scan that lighted up like a Christmas Tree. This disease can be so strange and unpredictable, when it comes to individuals and the unique evolutionary biology of their cancer cells.
Sadness, fear, grief, anxiety, hope, despair, gratitude, guilt, anger, emotional ups and downs, ... you name it, ... it can happen along anyone's journey with advanced prostate cancer from initial diagnosis, through multiple treatments, and right up to the very end. I've found that it helps to share some of the feelings and emotions with my closest caregiver/friends, and in face-to-face support groups once in a while.
I find I'm having a good day when I realize that I am "living" today, in the present moment, instead of ruminating about the shoulda/woulda/coulda past, or fretting about an unknowable future, or feeling that I am in the process of "dying" today. In the future I will die, of course, but today just feels better when it feels like it has been for living.
Charles
You are the king of rock & Roll !
Just finding this blog and hearing about the experiences that my brothers are having and had is uplifting to me. It’s tough when the monster wins a war.😡 but we battle on. Thanks for the thoughts
Yes reading this post certainly brings it home. My ON recently drew a line up & down on a blackboard for me & said you are here & i looked at the end of that line was the word death. Nice to know i thought but then i thought is it really that easy?
Finding it not easy to come to grips with the end of that line but live life one day at a time certainly helps me.
Fight the good fight comrades!
When I first saw the chart and I was stage four, I asked “ What is stage five, death”? The answer I already knew,Yes , death is stage five.. no stage five. You’re correct to say that we are probably nearer to the end of the line than the starting line. That being said , every human goes through the exact same stages of life whether having cancer or not we all die of something. These hormonally driven cancers for both men and women can be emotionally tormenting ,but still ;diabetes , early heart diseases and all of the other crazy disease that cripple and kill others are no joke either. P.S. that ONocologist is hopefully the best in the world, but I don’t believe that he or she should ever present a cancer patient with that interpritation of a downward line ending in death. What negative imaging.Some Docs don’t have ANY bedside manner ,For that matter all lines end in death even his.
For most of us , death will be a merciful release of the pain and suffering ..
Make peace with self and others and your beliefs here on earth because life is fleeting... I deal with what’s in front of me today,, like someone just said , there might be a yellow cab mowing me down around the next corner so enjoy what we can to the fullest.
Larrydammit,
Here is what I know about emotions; They come and go as they please. We feel because we feel and that's it. Like some here I have been witness to many deaths. Some with no emotion, although I loved the person dearly. Some with all kinds of emotion for people I didn't think I cared one whit about.
I guess it makes them a lot like Cancer. Come and go as they please and we just better learn to live with, in, and around it, because otherwise we are just bits of flotsam and jetsam swirled round and round until we're mud. We may not have control, but we do have choice.
I choose life, laughter, and love
(unless I'm busy being pouty rofl)
Very good!
Brutal ! Sorry for you and for him.... and prayers for the ...family...remember that you are NOT him , you are alive and doing pretty well you can’t stop that positive flow.. several months ago I too was in high spirits when one of our members decided that living with APC wasn’t living and took his own life.. it really hit us all hard , he was a vet of many wars and promoted us all to work out and stay strong..RIP Goodman who shall remain nameless999 whoa,, life is short.. you are here, don’t dwell on death, this was your father in laws time.. not yours.. I visisted my favorite uncle Ed in Eugene as he took his first shot of morphine at home in hospice and he then passed 3days later. This was 20 yrs ago I knew he haD Cancer. Brother just told me it was Pc.. He and my dad his brother both had PC , I still love my uncle. I lived away from both my father and my uncle while they battled the Pc.. I have so much belated empathy ,Now I know what they were going thru.. don’t think about end stage for yourself right now,, think and live for today, we are emotionally wrought and I understand your feelings. Contain them. Let’s not fear the reaper, until he’s breathing down our neck. I m so compassionate for anyone with any cancer... a heart wrenching disease indeed.. keep your chin up. The hospice nurse started to ask a questionto my Uncle Ed before she gave him his first shot, my uncle Ed said. “ I know what you’re going to ask me.. “”” He said “ I Am ready to , I am at peace with my maker””. I had so much admiration for him then and even more .. now. RIP uncle Ed. What strength and faith he had.. I can only hope that when my time comes that I too will be at peace with departed this realm. I am proud of your progress ,,don’t stop now. ,, peace...
I'm so sorry Larry 
Into the light of a dark black night
Take ownership of your prostate cancer
UPDATE on my dad. A story of hope.❤️ #advancedPC
Severe Pelvic Pain 
