Personality Changes as PC Discovered ... - Advanced Prostate...

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Personality Changes as PC Discovered and Progresses HIPAA Issues

Zxpl profile image
Zxpl
84 Replies

Husband goes from family man to playboy Jekyll and Hyde over the course of PC discovery and treatment. After 36years of marriage and sharing the love, excitement along with creating a successful business and the challenges of raising a family, my husband turned from a rock-solid, honest and loving husband and father, into someone NO ONE recognized-not his family, friends or anyone. He literally turned into a shifty liar who abandoned all of us!

I suggested counseling, but he said he knew more than anyone. His children and I have watched his mental changes with disbelief. He began acting like a narcissist. He hits on every pretty gal and makes an utter fool of himself. As his now former partner, because I was told he didn’t want to be treated like an ill man, which I understood, I decided to let him be whoever he wanted during the last portion of his life.

Up until that time, I was his caregiver, friend, ally and we had fun together, going to movies and being a happy, loving couple.

He picked up his first nurse, a young single mother with two children recently. They have an intense relationship. I was then BLOCKED from either seeing or speaking to my own husband when he started vomiting and I kept losing the hydration war. He couldn’t even drink water!

What should I do? Don’t HIPAA regulations give the wife legal rights to knowledge about one’s spouse, specifically the right to add my side of a story that’s completely insane? I know of no other situation like mine, but I certainly could use some guidance. We were inseparable until the nurses started actually playing into his instability. Holy cow!

I had been keeping him maintained, with a proper diet and life in general was good until he decided to tell me that he had a been seeing a girlfriend who had dumped him 40 years ago, He drove down to see her and came back with 29 lesions on his liver and he looked like a wasted wreck. I monitored him as best as I could, but wasting has continued from the info I have been able to gather. I have no contact with him and neither do members of our family. This is tragic for all of us.

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Zxpl
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84 Replies
Tall_Allen profile image
Tall_Allen

He thinks he has missed something important in his life, when the only things of importance are the relationships we forge. Tragic.

Sguh profile image
Sguh in reply to Tall_Allen

This was my take on the entire situation. I love(d) him too much to stand in his way, but I drew the line when he created a HIPAA nightmare.

scarlino profile image
scarlino

Unfortunately, he is responding this way out of anger towards having this disease. Could possibly be some chemical imbalance or even tumor activity. That said, unless you were named as a person to share records with, I’m not sure you can get access. Did you get listed on the forms? Might want to ask a lawyer about this. I am very sorry this has happened to you.

Sguh profile image
Sguh in reply to scarlino

I was his the holder of his Advanced Directive, but he can easily change that. We had a verbal agreement. Sadly he kept putting off the drafting of our Will. I can only hope he does the right thing. Everything is a crapshoot right now.

Kaliber profile image
Kaliber

Well it’s extremely sad to hear of this ... PCa cancer chemicals can impact us strongly , but infidelity seems contradictory, a bit , to what happens to most of us croakers here. You didn’t say what treatment/s he has had, but for many of us here , treatments have rendered normal sexual intercourse to be quite impossible. Even the treatments cause total disinterest in many of us.

We grow manboobs and our genitals shrink completely up, our sex drive goes to zero. It’s hard to imagine being attractive to ladies , more than friends , in this condition at best. Add in the very visual impact of a shrinking death ambiance .... like I said , it’s hard to imagine.

I can only speak for myself but what little family I have left , and it hasn’t always been pretty over the years ... I still value them highly in my final remaining bit of life .

Sounds like he’s running scared... probably terrified of his looming inevitability .... clutching for something. It’s a seemingly odd reaction that you should discuss with his palliative care team .... looking towards possibly some psyc meds and comfort family Counseling .... clearly he is needing some kind of help in this , his final era.

Good luck to your hubby and especially to you Zxpl , you sound like a loving person quite capable of helping your desperate husband have all he needs in this trying time.

Welcome here ... our advice may not exactly always be technical medical but our experiences are personal experiences and heart felt. Everyone here will try to give you their support as much as they are able I’m sure.

Hang in there , you are strong ,you got this and we have your back.

💪💪💪💪👍👍👍

Best wishes

Kaliber profile image
Kaliber in reply to Kaliber

An additional perspective may well be that maybe he ( possibly misguidedly) loves you so much that he strongly doesn’t want you to have to go through this with him. Doesn’t want you to have to experience the obvious grief that comes with all this. Still he probably feels like he needs someone, possibly someone not so closely connected ...maybe he feels so much grief as in letting you down ... maybe he doesn’t want to compound that with the awful slow death experience on top of it all. I’d bet some of us sometimes wish we could just crawl out in a distant field , under a rock, and just disappear from everyone and everything and let go .. it’s obviously wrong, even stupid .... but I can see how someone could feel that way. It’s just another take on things .. but possibly related as well. Just say’in

Zxpl profile image
Zxpl in reply to Kaliber

I found he is now staying with our daughter, which is good. I think you hit many nails on the head. The part of the story I left out was we were going to build a home with our son and his wife and children as well as live on the property and we would all work together to make it happen. I tried to block his plan to live ON the property, since I had been down that road with him years ago when he wanted to enlarge our small home. At least then we had a working stove, toilet and heat. Small propane tanks are no fun to constantly change out and no oven, is rough, but moving into two RVs when one le asked like a sieve and had a poop dam while our kids decided to go to CHILE? Well...there went the foundation money! The kids were irresponsible, husband was ill and I was the bad guy for stating the obvious. the winter was brutal, pipes froze...still, we made an adventure out of it for the kids sake, as I broke out in hives and oh, did I mention the wildlife? In spite of the potential danger of rattlesnakes (not in the winter), cougars, bears, coyotes and many more critters, his plans crashed when the kids took more money than they should have and went to CHILE. OMG! They all left Gary and I to pack up and clear out the old house. So nice of them! All signs pointed to BIG, BAD IDEA, but I was the bad person.

He had a friend who was also building, but he was healthy and he did so much grading work for us gratis. Gary called him Heaven Sent, but when he spoke to Heaven Sent about the other women in his life, HS became disgusted. Never burn a bridge had been Gary’s motto..and I seemed to become a troublemaker when I tried to take care of husband and myself. Clean and pack the former house up. It was a huge undertaking. It was NOT fun discovering other women and being called the troublemaker! My friends and doc plus counseling kept me sane as my husband began needing to escape and as I became busier with trying to keep him stable. He tried to cope, but the gals he turned to were and are oblivious. I could and probably will write a book about this crazy time. Christmas should be interesting...for Thanksgiving he and I spent that holiday in the ER, alone together and shared a hospital Turkey dinner, hoping the kids would bring us a bit of the dinner that was being prepared at our new rental home...nope. Family disintegration. Now as he wastes away into nothingness, I still have lots of work ahead of me. The kids think I should be able to handle it all...but they’re not 67. I am. Life is not easy on a good day. I do everything I can including holding down a full time job. Daughter lives in a pot haze raising two kids by herself and now has her dad. This chapter will be fun, I’m just watching and writing as I try to get to sleep before 4 a.m.

Kaliber profile image
Kaliber in reply to Zxpl

My heart goes out to you Zxpl .... your situation seems brain numbing . It’s inexplicable and that’s the nice version.

It sounds like it’s clear you are very strong and especially resilient to me. You will still have your family , however fractured, “ after the dust clears “ ( you know what I mean ) ... probably things will improve considerably there too when the main agitating element has moved on . You love him and don’t want him to go, but there will be a silver lining of release in that for you too nevertheless ...after the grief has passed. That sense of release along with brighter horizons lies just ahead. Your sorrow will pass and your fresh new brighter day will dawn. Hang in there girl, you are strong .... you got this.

💪💪💪💪💪💪

Zxpl profile image
Zxpl in reply to Kaliber

I’m trying. He doesn’t make anything easy, and I believe in one word, even though I know I’m far from perfect: Love. I realize I haven’t thanked you Kaliber. You and so many others here touch my heart and give me hope. Does it (ho pe) come in a drip bag?

Boywonder56 profile image
Boywonder56 in reply to Kaliber

All i can say is death might not be so bad.....kidding....he is hiding from the disease....but it will find him..

Speaking just for myself ....i may have lost the physical part of be

Ing a lover....but i still crave love......

in reply to Kaliber

Bravo Brother! This hombre is counter culture to where I’m at..

Kaliber profile image
Kaliber in reply to

Yea me too brother ... I feel like I’ll be lucky to ( if ? ) have someone that will hold my hand and kiss me goodbye when it’s time. It’s not like all this damn disease doesn’t wreak enough sorrow and damage on families and lives , but sometimes ... somehow .....one of us pitiful croakers breaks down and goes off sideways compounding the grief and sorrow. It’s really sad, you have to deeply feel so much compassion for this loving lady and his family. Dang ...

It’s easy to Villainize this guy by the sounds of things , and not say’in he doesn’t deserve it ........ still ..... he’s one of us croakers brothers ..... you got to put your arm around this poor damaged soul that crumbled under the weight of death and you got to give him some love along the line too. Kick his ass for sure , but he’s a brother ... he’s one of us. All of us are face to face with death ... he was weak , It broke his head. It’s kinda double sad ... sliding away gone sideways has to be even more hellish. It’s bad enough the regular way ( is there such a thing ? ) If I were in his shoes , someplace deep in my damaged head I’d want that arm around my shoulders from someone that “ gets it “. Whatever ... there is just no up side to any of this.

Peace and love brother ✌️

Escudilla profile image
Escudilla in reply to Kaliber

Damn! That was beautiful Kaliber.

As for me, I feel so lucky that I'm at the other extreme. I gave the kids a date night and therefore had the the grand-kids all for my self last evening. We Skyped grandma during bath time. I read stories and tucked them in. I'm hyper-aware of how wonderful this life is.

Last weekend was late nights up talking cancer with a fellow warrior and her sister. She's 7 years into Stage IV breast cancer, but we three post menopausal "sisters", touch base every few days with messages of care.

I check in with my brother's best friend occasionally. Unfortunately he is doing his best to run his family off. Not with lechery, but anger and meanness. Outwardly he always presented something much nicer. I wonder if all that was facade, and now that he's dying, he can't control what was underneath? Just a thought.

Acting out sexually in spite of chemical castration seems like a lot of work. He's really got something to prove. I've found that now that my wife and I have matched libidos (0=0), we (I) don't really have anything to pout about now. We'll, the cancer part kinda sucks, but we have our occasional cry and go on.

My heart goes out to Zxpl/Sguh. What pain life can present. It's such a shame when people unnecessarily vomit it back out on those they should protect.

in reply to Escudilla

It is heart wrenching ...this was extreme ,but we understand that people can break .. this drives home to me that I need to be kinder to everyone that I love..

in reply to Kaliber

You are right...I feel for his family more though.. correct ,we all should be compassionate towards him.. Reading this just mdd as Lea me all the more grateful that’s not me ......I am no angel ,sometimes a moody MF... TGIF ,enjoy the weekend and much more😂

Kaliber profile image
Kaliber in reply to

Absolutely , I totally agree..... we’re gonna be gone , but not them. Their pain will go on indefinitely. It’s past awful to trash their lives. Particularly someone that loves you so much. Sickening really.

This guy had an huge pile of drugs administered over time, I suspect that and stress played a large role in everything as well. Some people are just turds. It just feels kinda ikky awkward / uncomfortable to Villainize anyone so helplessly facing death. To me it seems that this guy clearly needs some serious mental help at the very least.

Backatcha brother ... boy this thread has been an ugly one. We need to get J-O-H-N back in here to lighten things up some. Yayahahahaya

Peace brother ✌️

in reply to Kaliber

✌️

Zxpl profile image
Zxpl in reply to Kaliber

I miss J-O-H-N...

Zxpl profile image
Zxpl in reply to Kaliber

No up side at all, believe me. Not one.

Boywonder56 profile image
Boywonder56 in reply to Kaliber

Well put....none of us asked for this.....

Jimhoy profile image
Jimhoy

What was his treatment?

I was fine with the Dx.... didn’t like it but any guy that denies that he can get it is a fool!!! So it wasn’t shock that a little ways into my 24mo ADT (6mo’s or so) my mind games started!! I was particularly aggressive towards my boss. He was a friend before boss so very informal relationship. Then it didn’t take much for me to turn on clients and subordinates..... to the point of violence at times. Then, anything out of my control didn’t work for me. Rowdy groups, kids playing loudly (kids being kids) dogs barking, noisy restaurants..... All completely tolerable prior to ADT. I used to be the instigator but now it fight or flight!!!! A couple simple neighbor issues ended up requiring the cops!! For me!!!!

Then confusion, loss of cognitive and executive abilities and sooooo much more. Hated the thought of meeting with people and became recluse and was taking my wife down with me. Noticed that the G kids weren’t around as much and knew I needed a check up from the neck up! Tough for a tough guy to admit!!!

So YES, treatment can really kick you in the head. I would expect worse than my case too!!!!

Sorry to hear your story but I can attest that from the inside out, I didn’t really see it!!!!!

Jc

Ps: As far as being a playboy...... we clearly didn’t have the same treatment.

in reply to Jimhoy

Hahaha... Jimhoy! I like you honesty . I thought I was the only one in this boat .. many don’t admit it ... as long as our hearts are beating there is Hope ..for good ... Take it easy amigo 😂

Zxpl profile image
Zxpl in reply to Jimhoy

He’s got a great spiel, charming guy...to everyone but me, unless we’re alone, which is impossible now, since I’m blocked. Hugs go a long way towards getting a lonely gal into his world and if he meets someone with a problem. He reels them in like he’s on a river during a salmon run! He has it down!

Jimhoy profile image
Jimhoy

Looking at your past post. Eligard was my down fall!!!!

Jc

Zxpl profile image
Zxpl in reply to Jimhoy

His was Provenge.

garyi profile image
garyi

We all deal with looking in the mirror of our mortality with this disease, but what your husband is doing is unconscionable. There must be more to the story. His behavior is not acceptable, PCa or not.

You have a number of compelling reasons to speak to an attorney, Zxpl. Good luck to you!

Sguh profile image
Sguh in reply to garyi

I feel this way more and more with each passing day.

Zxpl profile image
Zxpl in reply to garyi

Today!

LearnAll profile image
LearnAll

Sorry. HIPPA does not give a wife right to participate in husband's care if he refuses consent.

The Nurses can not disclose anything to you without his consent. unless he is deemed incapable to make decision by a psychiatrist and a judge designates him incompetent.

The the way is reacting can have many reasons..it can be unusual grief reaction or he might have developed acute mania in reaction to life threatening diagnosis. What I mean is that there is real possibility of a mental disorder going on.

US laws protects privacy of a patient strictly. The only recourse for you is to file a petition in county court describing the situation and requesting the judge to pass an order to get you involved in his care. Most judges are reluctant to do it but some judges do pass such order.

Once a court orders, you can participate in his care. Please don't fight with Nurses or hospital as they are just following the federal law.

FCoffey profile image
FCoffey

I'm sorry for your troubles. I see from your previous post that he has been treated with Eligard, Lupron, Zytiga with a largish dose of prednisone, Jevtana, Xofigo, denosumab, Provenge and Xtandi.

Yikes. Lupron was enough to make life not worth living for me. Castration changes a man in many ways, and none of them are good or pleasant. It hits some of us harder than others.

This doesn't excuse his behavior, but it certainly may explain a lot of it. As Jimhoy wrote, castration causes confusion, loss of cognitive and executive abilities and sooooo much more.

Those are all changes in his brain. He is literally a different person because of the treatments. Because they affect his mind, he doesn't perceive it.

I don't have any easy answers. All I can say is that he didn't simply choose to start acting differently. He was pushed. It's too bad that most doctors provide no warnings about these common effects and no supportive care.

Kaliber profile image
Kaliber in reply to FCoffey

Ah ..... good reply brother.

Sguh profile image
Sguh in reply to FCoffey

AGREE, PROFUSELY!

in reply to FCoffey

Well said ..

Thank you for posting the truth of his tragedy ...Nobody wants to see a family broken apart like this. I do think that it was beyond your control...you all have to save yourselves from such madness..I’d bet that there are many stories of guys going nuts but people don’t like to speak of it .. I went thru some craziness myself with gloom and doom and feelings of worthlessness or not being a man anymore ..My story is much different than yours.. I met my wife two years before dx . She was and is my dreamGirl . She saved me from pc .Like you tried to do with him. This is not your failure . These things are beyond us human to figure out. I’m sorry for the pain that you all must haves endured . I ‘ve had some family members turn on me in my drama. It is his greatest loss in life leaving you guys .. Sometimes there is no explaining crazy. Don’t blame yourself . I know that this pc is a rollercoaster of emotions for most of us.. add in some mental illness and tragic things can happen .It s good that you are speaking to us about it . We have many women members that can relate to pc madness in their men. I doubt that you are the only one. But I respect you for telling this truth... Being callous to his own family and hurting them is the worst that a man can do .. You are loved... but he’s a broken man .. 🙏

Kaliber profile image
Kaliber in reply to

Yes yes brother 😥

Sguh profile image
Sguh in reply to

I believe this scenario is not uncommon, just pushed aside. It has been my worst nightmare, horror and experience. 😢

in reply to Sguh

I agree . 😩

Zxpl profile image
Zxpl in reply to Sguh

The more I experience my life as I read your replies, the more I feel that pc and all cancers are violent, heartbreaking, gut wrenching and either bring people together or rip them to shreds. Despite his insanity and over the top behavior I love this guy. We have two children who suffer and treat me like a villain and 5 grandchildren-four of whom are at the edge of the unaware/aware of death stage. The fifth and eldest is 17, and a female hormone factory. Holy Juice Bar, she oozes estrogen like a guy OD-I guess, I guess, on some form of super steroid. She is loaded with emotions. I am over-empathetic and angry about what I’ve been put through, over a long period of time...much longer than I can believe and I can’t help wondering what came first? Was it the disease or the hate...or maybe the meds?

I believe the medication, compounded by brain mets made him the horror he is today, so while I don’t want to visit a lawyer, I have to. He became a serial liar and and womanizer-he wants all women to love him, but he is so angry with me, for living on as he fades away, he creates trouble in his family...the ones who “get to live.” I am not living, I’m trying to survive. It’s no picnic. He says outrageous things to create dissention. Today he accused me of removing a ring from his gym bag that he supposedly had in his own possession. I didn’t even know he HAD the ring in question! I’m the villain, no matter what I do or say. Throughout my life I’ve been averse to stealing. All it took was a silver dollar I took from my dad because I wanted to buy a pair of earrings for my mom, which got me the beating of my life, to NEVER, EVER think of taking someone’s belongings. I was four. My husband had the greatest maternal grandpa. He had a family crest ring. That ring went to Gary, then our son. I was happy for my son! He asked me to hold it for him, so it went in the safe. My husband removed it from the safe and told our son a lie about me, then removed other pieces of my jewelry out of spite. I’m not a jewelry person. I will wear only the same things day after day, year after year. For Gary to take those from me? That is hate. I’m not into possessions as much as his warped mind believes. What bothers me is his care team won’t check his brain for mets. Now I need to waste money to find out what I already know. He’s mental! My family thinks I’m the angry one? They are looking in the wrong direction.

The night he told me that I was the one who was supposed to die, not him, I knew he was mentally unstable, but no one was around to hear it but me. That’s the way he works. The life I thought we would have, disappeared in a flash and I’ve been in hell ever since, no matter how much I loved and cared for him. Hell. Love is Hell. This disease is a horror. If I could, I would do anything to find a cure. It causes more than death to the ones with the disease, it kills everything around it in certain cases...like the life I am currently attempting to survive.

bostonmac322 profile image
bostonmac322

I'm sorry to hear how difficult your husband's diagnosis has been on your entire family.

I was diagnosed ten years ago and had a reoccurrence 5 years ago. I t was incredibly hard on myself and my family. I am an introvert and withdrew and tried to manage the illness on my own. Unfortunately my wife had her own issues and struggled with my illness and the impact on our family. It became too much for her and 3 years ago she left me and our two kids. I think she was afraid that she would have to spend her life taking care of me. Fortunately after three major surgeries 3 rounds of radiation and several years of ADT my disease is manageable. However the loss that my family has endured is something that will never be rectified. PC is a terrible disease and it impacts all of us in ways that we never imagined and in some cases don't see. I'm truly sorry for the terrible loss PC has caused you and your family.

Sguh profile image
Sguh in reply to bostonmac322

I understand your battle on so many levels. Thank you for your candor. Love is an important asset. I honestly do NOT understand how other women can enter the picture and don't or won't bother to think of the families THEY are impacting, families like mine!

Merlin1960 profile image
Merlin1960

After seeing my husband through stage 4, radiotherapy to spine . Surgery , ADT, 40 sessions of radiation to prostate bed and lymph nodes he has gone off with his personal assistant who is 38 while he is 59. Unbelievable, he was so cruel and went off to call her many times a day during radiotherapy as “well you know what this is and you and I are just friends now “ she turned into a crazy woman if he didn’t call at certain times , I have to leave him to it and get on with my life , the last year and a half has been sheer hell... I know he will regret it but it will be too late for us.

Sguh profile image
Sguh in reply to Merlin1960

You and I have experienced a very similar tragedy. My love for life, the man I expected to be with all the way through life is like the man you describe. I can only hope they find clarity in some way, shape or form.

in reply to Sguh

😩

in reply to Merlin1960

😩These truths are more horrible than fiction..

Emmett50 profile image
Emmett50

I am so very sorry for all the painful changes in your life. While my husband has some definite behavioral changes, it’s nothing like your spouse’s. However, I believe the key for you is the same as it is for me. We are powerless over PCa and what it is doing to our spouses. If that feels terrible to us spouses, I can’t imagine how it feels for our loved ones. When I witness my husband’s lack of self care from his diet to his grooming and more, I get very frustrated. I can’t do a thing about it. It’s his body and his life.

What I can control is my attitude. I endeavor each day to have compassion for him. Our son and I were just talking about the behavioral differences. Our layperson analysis is that is how he protests what is happening to his body. He didn’t pick cancer. He didn’t pick the treatment in any real sense. He can pick what he wears and can choose to not cut his hair. He can choose to look like, as our son says, someone you wouldn’t sit next to on a bus or a park bench. After years of doing what our society tells men they should be doing, he is living life under protest. To me, it often looks like he’s given up. However, he says he isn’t depressed and wants to live to see our future grandchildren, He is compliant with his treatment plan. So maybe this is the way he does cancer though I don’t understand it.

You could spend hours thinking about your husband and worrying about what he’s doing or not doing. Sadly, the reality seems that all you can do is take care of yourself. The advice given by others to see an attorney seems wise to me. Who knows? Maybe he meets the standards for needing a conservator. At the least, you can secure your future. Please remember that as hurtful as his behavior is, it’s not due to anything you did or didn’t do. He is very ill in several senses of the word. Think of him with compassion. Pray for him daily. Take care of yourself. Stand up for yourself. Love the man and hate the illness. This too shall pass. Love and hugs from me to you. Mary

Sguh profile image
Sguh in reply to Emmett50

I don't blame him, I blame the cancer. We desperately need to beat this illness. It's an uphill battle all the way, but think of the reward. And so I fight on, day after day. Everyone reacts differently. That's the hardest part of dealing with cancer, the small, unique issues that crop up with each case...if only he would have been amenable to having the tumor removed when he had a fighting chance. Thanks to all. We each fight together. That is both love and possibly luck❣

Sguh profile image
Sguh in reply to Emmett50

I do hope there's a light at the end of this tunnel! At least I try.

Bebby1 profile image
Bebby1

I’m sorry this has happened.

As a wife of a APC sufferer I guess no body knows how they would react when faced with their own mortality

I’m also sorry that he doesn’t realise the value of family and important people

You have been a very supportive partner

I hope life treats you well in the future 💞

Sguh profile image
Sguh in reply to Bebby1

Me too...🥺

Psychmed profile image
Psychmed

What is happening to you and your husband is terrible and apparently unusual. You have a lot of support here. It sounds to me as well that this personality change is so drastic and dramatic that it might be related to his medications. I don't know off hand what the side effects of most of his meds are but prednisone can do bizarre things to people. it isn't unusual for a person so disposed to develop a severe manic episode. We are like blind men trying to describe an elephant. Just a long shot but you might look into having him committed. Best wishes to you both. Mike

Sguh profile image
Sguh in reply to Psychmed

I did notice the change profoundly when he took both Prednisone and Zytigs so I agree with the impact of the many meds he's been on.

tom67inMA profile image
tom67inMA in reply to Sguh

I also think it could be the Prednisone. It sometimes makes me a bit hypomanic (sort of a lightweight version of a manic episode). I can say from experience that when you have a mood disorder, it distorts your reality. It makes things you'd normally never think of doing seem like good ideas.

Best of luck to you!

Zxpl profile image
Zxpl in reply to Psychmed

I definitely need to seek help. My daughter already has her hands full with her two children. He has been off of prednisone for a year-plus, It may have started then, but mets in his brain, which has not once been checked gets my current vote.

LearnAll profile image
LearnAll

I am getting more convinced that your husbands is going thru an altered mental state.

If prednisone was discontinued suddenly, it can trigger manic or even psychotic behavior Fortunately, it is easy to treat and the man can be back to his original self.

Do not judge a man who is going thru a psych condition...he is still the same, good man temporarily behaving strangely due to psych alteration of neurochemicals in his brain.

Jimhoy profile image
Jimhoy

If I might suggest, with the information gathered here, approach his Dr or NP with these concerns. I believe it’s fair game to report conditions like this because of their relationship to the treatment they prescribed. I believe a good Dr would want to know these things and just may intervene.

Nothing ventured, nothing gained!!!

Jc

RonnyBaby profile image
RonnyBaby

It appears obvious to me that he has lost his 'normal' way of approaching life, BUT I hate to use the 'but' thing, BUT - I went nuts - unrecognizable to virtually everyone who knew me because of the treatment(s) and my loss of 'self-identity'.

Today, 2 1/2 years post Dx, I am a completely different person. I am forever changed and will never return to who I once was.

I 'blame it' on ADT, but the fact that I also have a permanent case of ED doesn't help.

What IF I felt that I had missed out on my 'wild sexual side' - perhaps NOW is the time to prsue itt. After all, time is running out and MY value has diminished greatly. I'm no longer attractive as a partner, because I'm not half the man I used to be .....

The above types of thought processing went through my mind for awhile. I had lost my way.

I was nuts. I thought of running away and finding love in all the wrong places. Even though I had a great sex life (in the past) with multiple partners - I didn't miss out on anything - but it was still part of my identity - my past - but today - a complete dud.

What was I telling myself ?

Who was I ?

What had I become ?

This happened to me.

OK, now what ?

I QUIT ADT without consulting anyone.

I went to an ED clinic - a work in progress, but it looks like I need an implant - not something I would look forward to.

Would another woman want me as her next new partner ? NO, NO NO ....

That's a lot of adjusting to do for some - too much to ask another ....

So what's up ?

A sad situation that I believe occurs in some patients.

Treatment, in some cases, is worse than the disease.

I suspect that I will never allow Lupron to be used ob me again.

IF my condition worsens, I might pass on further treatment(s).

Was it that bad ?

For me, YES it was.

I'm much better now, but the changes that were forced upon me are permanent and significant.

I need(ed) to accept the fact that I am forever altered and the new me is still loved and cared for.

Can someone fix what you are experiencing ?

Maybe, after time and perhaps a wake up call for him when the fantasy fails as promised.

IF those he has abandoned give another chance to return to they place they rightly belong.

IF he had the courage to come back, after the fact.

I feel sad reading about your situation.

Another PCa tragedy story.

I hope that things can be resolved in a way that provides some peace and some hope moving forward fighting this monster disease that has ruined so many lives .....

You are not alone in this journey. We wish you well and pray that he will understand what he has thrown away in vain.

in reply to RonnyBaby

As one that’s been on constant adt with a t level of 3 four years now I can appreciate your thinking. I ve had many of the same thoughts .. I too blame it on adt but also in my case I realize I’d be dead already without it .

RonnyBaby profile image
RonnyBaby in reply to

I agree 100 %. In my case I believe ADT did it was supposed to do. There is a chance that I'm OK as a result of treatment. I simply have to hope for the best and pray that I can avoid further treatment(s) of any kind.

It's out of my hands, for the most part. It's fate

in reply to RonnyBaby

I feel the same...

Muffin2019 profile image
Muffin2019

Sounds like he is really going off the script, it sounds like frustration . I am glad the sex thing is gone it makes friendship very special. Being single, losing my sister to lung cancer (a non smoker), a brother who has colon and bladder cancer with a short life outlook it makes me enjoy the small things. I have a close male friend that is going through this with me is special and the 5 cats are my joy. I made my directives right away just in case it gets worse, you need a lawyer. I agree he has some mental issues, it is like he is proving himself with sex as if he missed the thrill of picking up women. I hope he realizes what he is throwing away, a dedicated wife who is with you to the end. My father after a stoke turned on my mom out if frustration due to his life changes but she stood by him until the end. Whenever tradegy strikes some people turn on the closest person to them. Good luck and keep the faith and pray for him that he comes to his senses.

Zxpl profile image
Zxpl in reply to Muffin2019

I do it all...he’s hurt me and that gives him some sort of perverse pleasure. Of course everything happens during Christmas...

VictoryPC profile image
VictoryPC

Always beware the man who feels he has nothing to lose. Especially and the end of life.

Zxpl profile image
Zxpl in reply to VictoryPC

No Sh**!

Zxpl profile image
Zxpl in reply to Zxpl

He has made sure he covers his tracks. I can’t prove anything except one and if I do, it destroys our entire family because he made almost all of us a party to it. I didn’t approve, I can’t do this to my family. He’s a sick man, but to tell this one thing...it would be horrible. He’s a Charlie Manson (minus the murder) and our family became his followers. How can I protect myself from that? Victory PC, he has made almost everyone complicit to an illegal act, but threatened me if I ever speak of it. He has absolutely NO filter. I feel like a psychologically tortured prisoner. I’m a PTSD wreck.

MateoBeach profile image
MateoBeach

Oooff! How terrible. My heart goes out to you.

This is irrational. You must protect yourself and your family from further irrationality at this time.

Secure your financial assets in your own name in the meantime and consult a lawyer.

One can only hope that he lives long enough for the cause to be identified and reversed (if it is physical), or run its course if emotional. this community for you and also for him.

monte1111 profile image
monte1111

This has been a hard read. I wish you the best. Maybe I should be committed. There are others on this board who should certainly be committed. You know who you are.

j-o-h-n profile image
j-o-h-n in reply to monte1111

j-o-h-n <===<<< raises hand...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/13/2019 7:30 PM EST

in reply to j-o-h-n

🙌

2_old_and_grey profile image
2_old_and_grey

My prayers are with you, I am a cancer survivor from 2006. I had cancer in my mouth and lost 4 teeth on the upper right side. I found the best therapy for me was telling my friends. The response was great. No sympathy, only a helpful concern. This may not help your husband but it could help you get through his current problem. I also now have PCa and all my friends inside and outside of the church know of my condition. I found that a happy attitude was best for me in 2006. It also works today. Most of my friends comment if I ever arrive with a sad attitude that they would want to check my driver's license first and then tell me to snap out of it because that is not my normal attitude. Even in sickness life is fun and worth living, Seek help for yourself as you can help yourself even if not for your husband. God Bless.

Zxpl profile image
Zxpl in reply to 2_old_and_grey

I sought help from the start and I just wished to verify that all the reactions he has been having are not the norm. He most likely has some form of brain malfunction. I know he’s giving ME one! This disorder is a whopper. He’s had so many different treatments, literally from A-Z (funny how there practically IS a form of chemo or other treatment that fills up the alphabet!)

and believe me, I did my homework for him, researching supplements, making sure he would eat right, but he’s got me in a headlock and the family seeing dollar signs. I want to do the right thing. IS HIPPA right? I am left to worry about the fallout. I spent so many years with him, I know him inside and out. The rest of the world only sees what he wants them to see. He wants exactly what he thinks he missed, which was nothing except money he didn’t have to work for. He was born into a family of greedy people on his mother’s side and Davey Crockett’s family on his dad’s side. His saving grace was his maternal grandfather. Grandpa was EPIC! He lived long and we had a great relationship. My husband wanted to be him, but no more. Now he’d rather see what he believes he missed. I know PC has affected his brain, but he won’t have a scan. The things he says to me and his actions towards others? Night and day.

It scares me to see him this way. I, of all people, do not wish him harm or pain, but he is hurting me deeply. I am thankful that our daughter has a bed for him, for when he moved us into an RV to build a house? It was YIKES to the Nth power, especially when I fell through the floor at the start of a long Sierra winter.

He’s not missed a thing in life. We lived a rarified existence until I noticed he had a strange, sour odor and pc entered the scene. I feel like I’m watching him drown and try as I might, I can’t save him. I gave him freedom. He had lied to me about something for years, it was a bad choice on his part. When he wanted to visit an old girlfriend, it wasn’t great because his lymphocytes went down to nothing and the trip almost killed him. He returned with 29 lesions on his liver, so I felt heartbroken for him, not me. Thus began more treatments, Keytruda this time. Two infusions, zero help. More blood. He either vomited or had diarrhea and it wasn’t pretty. I would clean him, and massage him with a cream that I made for him. They wanted to try PAR-P but he became so dehydrated, I could only give him ice chips. I tried Ensure, you name it and I ran out and got it. All he had to do was ask and often if time went by, I would make him take ice chips and massage him. He wouldn’t take the meds they gave him except the Morphine IR. He went into the hospital again, drove himself after telling me he was going to visit our daughter and the last time I saw him, he was laying in a hospital bed, getting fluids. Then I called in the morning to check on him...I held his Advanced Directive, and found I was blocked! No explanation, nothing. I prefer knowledge, thank you. This is where HIPAA comes in. Do I or don’t I and how do I prove anything? He hid things from me for years. I was shocked to discover his subterfuge! This is not the man I married. The one who was honest and true. I’m in a jungle where no light gets through so I can figure out which way is north, not a speck of moss on a tree to aid my direction, not a family member, animal or other person in sight. Now the aide needs aid, but who and how?

I love you all, you live, teach, reach out and most of all, you understand. I need that last word most of all... I have direction, I think. I also find love here. I need that most of all.a virtual hug that makes me feel all will be as it’s supposed to be. Thank God for my dog, too. He’s my friend through thick and thin. My family? The people I thought I knew? Not a sound, except for whispers behind closed doors.

j-o-h-n profile image
j-o-h-n

Make sure his life insurance policy is up to date...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/13/2019 7:04 PM EST

j-o-h-n profile image
j-o-h-n in reply to j-o-h-n

Reply to myself.

I wish to commend all of the responses to Zxpl by the brothers here (mine too).

With special Kudos to Kaliber and Lulu....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/13/2019 7:36 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Jumping in to save me AGAIN brother. Wow ....

Need a wheelbarrow to carry that heart around in , thanks buddy. This disease is enough to make any of us a little crazy.

Not LuLu tho .... nooooooo. A guy that good looking , that mobility, personality and all those stylish cacti needs a trip to the penalty box. Not fair to the rest of us pitiful ugly frumpy stepbrothers yayahahahaya yayahahahaya. When you got it ....you got it ... I guess.

You guys are the best , seriously. And thanks for jumping in and lifting our spirits... way too much Debbie Downer to be good for any of us. You empower us to maintain some balance and lighthearted perspective. You da man J-O-H-N.

Peace and love brothers ✌️

💪💪💪 thanks to you.

in reply to Kaliber

I’m a day late and a dollar short ... we laugh and we cry ...humor heals the soul...Your one good egg Newman ... j-o-h-n saves this cite..I admire the people that post the “real” side of pc bs .... It’s strange but knowing that I’m not the only smuck with my foot caught in this rotten trap.... I can relate to all of the maniacal stuff. You’re good to tell me not to judge. Who am I to do so. ?Nobody . If you haven’t already checked out Johnny Depp in “ deadman” it’s pretty good .they have a character in it that goes by “ nobody” That’s me .. Take it easy High Kaliber... peace✌️

Kaliber profile image
Kaliber in reply to

You got that right brother ... we’re all Bozo’s on this buss for sure ( Firesign Theatre ). Got a transfer ticket to the crazy train too yayahahahaya.

I’ll check out “ deadman “ , depp is always amazing . Thanks.

👍

in reply to Kaliber

It is irreverent but a truthful depiction of old west gone wild .

in reply to j-o-h-n

I applaud your presence here by daily laughter .Thank You !👏

Zxpl profile image
Zxpl in reply to j-o-h-n

So many thanks!

in reply to j-o-h-n

😂😂😂

Zxpl profile image
Zxpl in reply to j-o-h-n

No life insurance. He lost our house, and gave away so much. I have no idea where my jewelry is. He has a young hospital employee helping him. She’s a piece of work! Kinda why I need HIPAA.

poofers profile image
poofers

Having been metastatic myself for 5 years and counting now I can relate to what you are going through as well as your husband..HT treatment robs us of our manhood and turns us into menopausal monsters. This is certainly a result of hormone imbalances that directly affect the brain. His hitting on the girls is most likely related to his insecurity by losing his manhood and is trying to prove to the world that he still has it..I can some days be nasty to my loving wife for no reason at all only to realize the next day as to how poorly I had treated her for no reason..Luckily she is standing by me so far and for the most part the SE from HT have tapered off and I am mostly feeling normal with the exception of the low libido.

I feel for you and hopefully your husband will see his mistake and take action to correct it before it is too late..Hang in there

Emmett50 profile image
Emmett50

Just a quick note to tell you I’m thinking of you tonight. Peace be with you.

-Mary

Sounds like brain Mets and dementia. See a lawyer on this. You can bet that this gold digger “nurse” is now his caregiver and will inherit everything he owns; including his part of your family business. Sad situation, but get legal advice and protect you and family.

Zxpl profile image
Zxpl

Trying.

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