Disturbing : My Wife woke me 4am this... - Advanced Prostate...

Advanced Prostate Cancer

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Disturbing

Zetabow profile image
101 Replies

My Wife woke me 4am this morning, I was dreaming and calling out in my sleep in obvious distress. What little I recall from the dream was I was being tortured and someone sticking a sharp object into my leg, what was actually happening was I was in real pain and my dream state picked up on my physical pain.

It's not the first time and it is becoming a little disturbing. It made me think that I have might have unresolved issues with my terminal condition that maybe my subconscious has picked up on this (I'm a practical person and I really thought I've come to terms with my end of life quite well), or just the pain seeping into my dreams, either way it's freaked me a little today.

I did call hospital's palliative counselor today, I thought it might be good to talk this through with someone but he said he's not come across this before.

Anyone else experienced this, if you have, how did you deal with it?

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Zetabow profile image
Zetabow
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101 Replies
Kaliber profile image
Kaliber

Uh .... you taking any opiate pain meds ? What you are describing is a common opiate side effect ... and nothing of much consequence. The stronger and more meds you take the more vivid and frequent the night dreams ... they can even happen in the day time even when you are barely dozing off. Dunno if you use pain meds , but if so ... that one explanation.

Just say’in 💪💪💪👍👍👍

Zetabow profile image
Zetabow in reply toKaliber

Yes I've been taking Oxycontin and Pregabalin for 14 months but due to Radium 223 treatment I've been able to reduce the Oxycontin by half 120mg a day now rather than the 240mg, I'm still on 150mg of Pregabalin. Also one dose of 5mg Metadon at night.

I cannot take any less dosage, I tried with painful results.

Kaliber profile image
Kaliber in reply toZetabow

Yea ... of course there can and most probably are additional elements involved but for sure and extra especially at those opiate levels, vivid and / or morbid or both dream episodes ( even spontaneously during daytime naps or near naps... tisk tisk on the naughty ones wink wink nudge nudge ) are quite common. Colloquially speaking, you are hitting the sauce plenty hard ( how do you get such good ones, best I can do is Dilaudid yayahahahaya. ) and having those types of experiences are not only common but expected. This probably doesn’t apply to you right now ....but ... there is a cognitive rule of thumb in your ( our ) circumstances ... these originally developed from much street use . It’s quite common, and totally normal, for people that use heavy ( even lesser ones in many people ) opiates to experience bouts of depression ... seriously intense depression in many people. when experiencing those heavy downer trips from opiates , and they are common too for long term users ... cognitive rule of thumb is : clean up for a minimum of two weeks before making any “ serious “ decisions or life decisions . Two weeks minimum. Absolutely, but one month even better. Opiates absolutely are tricky and mental changes can / will creep up on you almost unnoticed.

You don’t have to cut back if you can maintain enough mental clarity ...and include those close to you in your mental thoughts and decisions ... a wife is perfect, your pain mgt team and even close children. You’re good to go , safely, if you follow this advice ... it can be hard ( maybe socially uncomfortable) but it’s totally necessary. Opiates can be and are life savers ..and a fundamental key to QOL for palliative people like you and I and many here. Still they bring their own bushel basket of side effects too. It’s not hard to manage those skillfully if you stay on top of things.

Peace my brother ✌️✌️✌️💪💪💪

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

Kaliber's Posts Matter...........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 1:53 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

J-o-h-n will make you laugh and break up the gloom and doom. Pretty important on a stage 4 group .

Just say’in 💪💪💪💪👍👍👍👍

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

To play the song just click on the title on top of video:

youtube.com/watch?v=fm6EHQx...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 5:15 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

That’s funny ..... see !!! ...that’s what I’m talk’in about !

😂😂😂😂😂

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

It gets funnier when I post that naked video of you playing volley ball with those Catholic Nuns....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:29 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Hey !!!! They didn’t even have video recorders or even 8mm back then. I actually did attend catholic schools back in the day ... still got the scars on my knuckles to show for it. Yayahahahaya my kinda young , desperate and hapless mom put me thru that turnstile in the wall at a cloistered Monastery...where the groceries and stuff is delivered. I stayed a couple of years at least. About 30 - 40 other kids like me there too. Perfect training for my years in the military decades later yayahahahaya yayahahahaya.

😂😂😂😂

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

No recorders or 8mm. They're oil paintings......

So if all the other bunch of delinquents were in a cloistered Jewish Monastery... Did they call you kids Shmonks.... (old joke - had to use it, running out of material)...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 7:37 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Wow ... now “ that’s “ old. shmonks , that’s funny ... you can use all your old material here .... where it’s new. You can do the warm up for Shecky Greene .

😂😂😂😂😂😂

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

Good Evening ladies and Gentlemen, welcome to the show tonight.... Shecky asked me to inform you that he's been happily married for 12 years... out of a total of 20.... Okay Doc let's hear that rim shot....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 10:17 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Get the hook ... yayahahahaya 😂😂😂😂

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

The hook is passé, Hey man get with the new normal, which is:

They place a 3 foot 200lb midget standing on a 4 foot wooden crate next to the performer.

If the performer "sucks" they blow a dog whistle that only the midget can hear.

That's the signal for the midget to grab and hold onto the perfomer's giblets and at the same time jump off of the box.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/05/2020 6:02 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Wooooooohahahahahaha yayahahahaya. I had no idea the hook was upgraded like that. Just a thought popped into my mind tho ..... The midget would probably hurt himself hitting the floor when he grabbed for the giblets of one of us guys on the group tho yayahahahaya

Just say’in 😂😂😂😂

in reply toKaliber

Everything old , is new again. Everything but us.

Kaliber profile image
Kaliber in reply to

Haaaaay now ... “ I feel as pert as a rutting buck “ .. in Outlaw Josey Wales !!!! Yayahahahaya. If you remember that scene in the movie , it has a kind of twisted relevance to us guys Yayahahahaya.

in reply toKaliber

Was a classic Eastwood flic. I’ve got a pic of Josey on the wall

Kaliber profile image
Kaliber in reply to

With your love for the cactus and pines and those great locations ... seems like a natural fit.

in reply toKaliber

I grew up a western kid ,my dad was a ranger ...good times

Kaliber profile image
Kaliber in reply to

There’s just something fundamentally solid and pure about all that. I lived in Central , Tx ( Killeen ) for about 10 years , even got divorced and remarried there too ... my daughter was born there. 44 years ago. I can spot a cowboy from a Rexall Ranger a mile away. 😂😂😂😂😂

in reply toKaliber

Big hat ,no cattle .. my bro’s x wife is from Killeen, and resides there today . He was at ft Hood and met her on New Year’s Eve at a country bar .

Kaliber profile image
Kaliber in reply to

Well I hope his ex isn’t also one of mine , that’d be weird. Seems like a small world, sometimes, doesn’t it.

in reply toj-o-h-n

Only on Fridays!😳

in reply toKaliber

👏🏼

monte1111 profile image
monte1111 in reply toj-o-h-n

yayahahahaya, just say'in

in reply toZetabow

That can give you dreams!

in reply toZetabow

Personally Sir, I wouldn’t be rationing to half dose . suffering pain Limits healing .

treedown profile image
treedown in reply to

What a group, how lucky it was I found you all here!

in reply totreedown

Luck has nothing to do with it friend. It’s kizmit ! Like minds think the same. We fight the bull shit and pain the best we can . Smiling and laughter shouldn’t stop because we’re sick with pc . Take it easy . I will take it any way I can get it! ✌️

Kaliber profile image
Kaliber in reply totreedown

Well .... we’re not “ all “ here .... yayahahahaya ( a few screws loose here and there don’t count ) We’re “ all “ here as brothers tho ...

💪💪💪👍👍👍

treedown profile image
treedown in reply toKaliber

Agreed, hey where does yayahahahaya come from ?

Kaliber profile image
Kaliber in reply totreedown

It’s my unique rotflol and lol, I get tired of the sos repetition ... its more literal but the same thing .... also its a handy conversational sub routine call .... to move the conversation or program off in a different direction or new thought.

Plus if expertly used it can convey a aura of mental psychosis ..... ( insert yayahahahaya here )

Just say’in

😂😂😂😂😂

My husband has such vivid dreams since he was diagnosed he calls out in absolute fear. He saw someone about coping with the stress and the nightmares are gone.

in reply to

I want to see “ that “ someone? Good for him and you two . My wife basically stays over on the edge of the king size to avoid her my night sweating shananagans !

in reply to

This therapist says that everything we experienced that is not resolved is stored in our body..: 🤷🏻‍♀️ She talked him thru about his first understanding of death etc. He found it mind altering. I think technique is called matrix manual therapy. We have Issues in your tissues 🤔

treedown profile image
treedown in reply to

I remember one night early on when I needed to know what the end would be like assuming the beast takes me. I had real "fear" and I researched it processed it and it has not returned yet. I am early to the party so who knows if it will return.

in reply totreedown

What a party it is ? 💪✌️

in reply to

That’s fantastic. I like to hear stories like this. True, if we can dump our past baggage we can live in the present .

in reply to

That’s pretty great!😎

noahware profile image
noahware

"might have unresolved issues with my terminal condition"

I'd be worried if I did NOT have unresolved issues with my terminal condition. It is part of man's nature to ponder his inevitable demise, even when he's still healthy and the impending ending is (hopefully) far off in the distance.

For most of us, death can only be experienced once, and we're just going to have to be patient and wait to see what it's all about. Physical pain, on the other hand is very real. It makes perfect sense that it is likely to impact our dream states, whether we are experiencing pain at that moment, in our sleep, or merely processing the memories of past pain or the anticipations of future pain.

To the degree that we can, it is nice to find ways to stop THINKING about pain. Pain is pain, but thinking about pain is "suffering." Not sure which of those two we really have more control over, but a glass of really nice red wine seems often to help with both! (I have never tried this WHILE sleeping, but I'm tempted.)

Kaliber profile image
Kaliber in reply tonoahware

A glass of red wine “ while “ you are sleeping .... please don’t tell my wife how “ that “ works ....yayahahahaya

in reply toKaliber

Red red wine🌵

Kaliber profile image
Kaliber in reply to

Ub40 ...I b drunk ..

😂😂😂😂😂

in reply toKaliber

UB happening

Kaliber profile image
Kaliber in reply to

I b whacking moles right now ... the moles are winning yayahahahaya.

🦔🔨🌵🌵

Boywonder56 profile image
Boywonder56 in reply to

I bee high...i mean hive....jive talking...oops

Drphil1938 profile image
Drphil1938 in reply toBoywonder56

Two well made martinis, stirred not shaken with two queen olivesmsybe stuffed with anchovies. Mmmm, I gonna go make me one. Maybe two and sweet dreams, no nightmares unless it is about an empty gin bottle. 🍸🍸🤠

tom67inMA profile image
tom67inMA

Decades ago, long before cancer, I was prescribed hydrocodone for a cough (for which it worked very well). I only took it for a week, but after stopping I had the worst nightmares of my life, and literally dreamed of my own death.

Kaliber profile image
Kaliber in reply totom67inMA

I hear you brother .... well the upside of that is that you weren’t dreaming of the death of everybody else and garden shears. Edgar Allen Poe et.al. Yayahahahaya yayahahahaya

Peace brother 😂😂😂😂

in reply totom67inMA

Crazy withdraws. 😂

I can relate to pain adding to a fitful sleep or even nightmares. The drug also can do it? I have wild and crazy dreams many nights . More often than not. But I’m not in the pain that you are right now. I hope that you can find the switch to flip that pain around. I’m sorry that you’re suffering so my brother. 🙏

Kaliber profile image
Kaliber

Getting DXed throws a big wrench in anyone’s works ... it’s never easy realize and accept “ that “ news buddy. I hear you.

💪💪💪🌵🌶🌶

Boywonder56 profile image
Boywonder56

"Nobody gets out of here. ..alive"

in reply toBoywonder56

All in the same boat 🚣‍♀️ . They set us up for this as kids with that song row your boat 🚣‍♂️ Life is but a dream!

Kaliber profile image
Kaliber in reply to

No kidding buddy .... now we rowed our boat up Schitz Creek and lost our paddles 😂😂😂😂😂😂

in reply toKaliber

How about that Shlitz malt liquor bull? Taken from the market . Ain’t no getting out of this boat. Keep your hands inside at all times. Niagara is coming for us all. As long as it’s not “ deliverance”I’m good. Until then enjoy what we can amigo 😩

Do you have access to medical marijuana? I wonder if an indica gummy before bedtime could help.

in reply to

It sure could .

Doseydoe profile image
Doseydoe

I had a nightmare a few weeks ago. I was hacking off the arms of these faceless aperitions with a chainsaw. It was pretty bloody and I was just going berserk. I am not taking any opiates but I had had a chemo shot and was on the steroid Dexamethasone. I must say it was kinda cool but I was on the right side of the chainsaw, he he... 👍😎

in reply toDoseydoe

Haha some inner tensions being released. Better to give than revive in this casec😂😂😂✌️

Doseydoe profile image
Doseydoe in reply to

The inner battle, keep up the fight brother, 😎DD.

in reply toDoseydoe

😂

Kaliber profile image
Kaliber in reply toDoseydoe

Hummmmmm ..... wow that was a trippy experience, yikes .... so... was there lotsa like squirting blood and a bunch of helpless young girls all running around screaming and hiding in the shed with the chain saws or up in the attic ...basement ? Hummmmmm .... what , exactly , was it you said did this to you ..... were you ....ah ...er .... smoking anything .... and you got any that same exact stuff left ? Just wondering ....

✌️✌️✌️✌️

Doseydoe profile image
Doseydoe in reply toKaliber

No, nothing like that, only me doing the doseydoe with the chemo and the dexyyo. It was more like a scene from a John Wick movie. I was calm and calculated but with a blood lust.........

Kaliber profile image
Kaliber in reply toDoseydoe

More the 9mm and 20 clips than the chainsaw type ... I can dig it yayahahahaya. It’s all good 👍👍👍👍

Doseydoe profile image
Doseydoe in reply toKaliber

Shouldna killed the dog..... 🐕

Kaliber profile image
Kaliber in reply toDoseydoe

The man loved his dog 😂😂😂😂

dmt1121 profile image
dmt1121

Damned if you do and damned if you don't. All of what has been written here is a testament to the horrible trials and tribulations you have all been through from this disease. We are told to take medications early and not let the pain get ahead of us.

We are also told not to become addicted to heavy pain meds like oxy because it leads to a terrible downward spiral. We are also told to seek out palliative care and see therapists. All of that seems like good advice, just incomplete and sometimes conflicting.

None of this can circumvent the real life experience of facing death alone, while in the company of our loved ones. We all do the best we can by taking enough medications to make the pain bearable and still allow us to be able to remain present for the time we have to experience the joy of living and of seeing, hearing, smelling and touching all the people and places we love.

We will certainly have the night terrors, sleepless nights, depression and emotional, mental and physical pain that comes from fear and the worst that this disease has to offer. I hope we can all feel and remember the moments before and after those bad times much more vividly and deeply.

Here's to remembering the best times and forgetting the bad! Cheers!

Patrick-Turner profile image
Patrick-Turner

Dreams get quite weird as we age and the remnants of youth fade away for the onset of old age which methinks cause a pile of dreams we sometimes recall because we get up 5 times a night to pee, as a result of drastic changes to PG area and all nerves involved.

Its a big wonder than more ppl don't admit to getting at least mild symptoms of PTSD from having lived their previous 50 or 80 years, complete with a mixture of failures and successes with ongoing fatal illness pursuing us. One can say life after 60 is a horror story; ie, of one lot of shyte hitting the fan after the other, and Destiny tugs our live condition to convert it to a dead condition.

I often dream of being at very unusual parties with women I would never choose while awake, and doing crazy things, never worth doing while awake, but as I have not had a wife since 1978, not a living soul has had to listen to my outgoing nightly verbals about my dreams, and so far, I am lucky that pain has not caused me to scream at night and wake the neighborhood.

I have yet to get to palliative care. Lu177 treatment continues and may stave off the day when a doctor says to me, "....there's only one thing left, palliative care".

This is when nothing else can be done, and it would have to be a shocking situation to find yourself in, and if you have a wife who is still sane, caring, and healthy, then you'd have to hope she might just hold your hand as you glide to down to being un-alive. We all have to face this time, and in my case there hasn't been a caring wife since 1978, so when my end looms I just have to be brave and face it without making a nuisance of myself, as I have had to do with all of life challenges before now.

I've seen other relatives die alone in a morphine induced stupor when pain got so severe they just pressed the bedside button to increase morphine levels until they had heart failure, but little pain. My sister died this way with ovarian cancer the night after she gave us a cheerful goodbye and finally making her will. She apologized for any wrong she'd done to anyone, and its at this time the air was thick with love and compassion for her, and off she went to death with humility, and as much resolution as could be had. We all had a good cry later, but it was Nature taking its course.

Pain meds can have strange mental effects. I hope you are surrounded by ppl who understand all that.

Despite me thinking my future is very limited, I went out in very cold winter weather and enjoyed a cycle ride of 53km, and I am so lucky this reduces any aches and pains.

I just stay busy with craft work, talking with my friends, and it stops my mind hovering over negative issues of un-being. I very much doubt I will be very strong when finally Pca causes so much pain I don't want to live any more. I am but just another humble human being. I have lived, and its basically all we can expect.

Patrick Turner.

dublin1717 profile image
dublin1717 in reply toPatrick-Turner

Enjoyed reading your response. You could be a writer with the way you write things down. My husband is 53 and I am 49, we have just started this pc journey. Dx June 1st followed by LRP 6 wks later 13th July, we are waiting on pathology results. You were obviously both very young when your wife died. My condolences on the loss of your sister. Keep that contact going with your friends, They are so important and I’m sure they care about you more than you know. I’m a keen cyclist myself and I love the freedom of being on my bike, it makes me feel really good. Enjoy your cycles when you can.

I am petrified inside for my dearest, gentle, Kind man, for my 4 young children & for myself. I’ve learnt how to hide it well though.

You are all such brave men and I couldn’t wish you all any more blessing than I do.

God bless Patrick.

in reply toPatrick-Turner

Post Testosterone stress disorder😂

treedown profile image
treedown in reply toPatrick-Turner

Thanks Patrick I am sitting here weeping, but I mean it. Thank you.

Patrick-Turner profile image
Patrick-Turner in reply totreedown

Well, if I could be there with you, I'd probably see if I could take you for a walk outside if it was a nice day, or make you a nice cup of tea and put some good music on. Even if you got me all wet eyed it would not last too long, and hopefully things would get better soon.

Its natural to have a real good cry some days, for whatever reason, because life can be saddening, so let those tears drop, until you are done, and tears are often a sign you are coming to terms with something in your mind. We are humans, and none of us are made out of steel, we are fragile, but resourceful, and most of us can come out of sadness to deal with a challenge.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

Something you said just hit me, or it was the Lupron. Either way as always it was nicely said.

Patrick-Turner profile image
Patrick-Turner in reply totreedown

Lupron, Lucrin, Eligard, Zoladex, et all are terrible companions we are forced to have. Drug companies really should add something extra to keep us larfing.

I hope my words hitting you left no bruises. I can cycle a few km for you if you like, for free, and today. Its very good cheap therapy I can offer. I did a few km for my oncologist who is a bit of a sad sack because he presides over many ppl as they shuffle off the Planet, and I'm the only one to turn up to see him after stepping off my bike, which I park in the waiting room.

Anyway, I warned of the side effect of me doing cycling miles that he ought to doing but isn't and that's the slight feeling of elation and raised heart rate of me going up over a hill, for free, just for him. He smiled for the first time I ever saw him smile.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

No bruises, just smiles. Yes do some extra km's please I will do some extra miles for you. Yesterday was a roller coaster of emotions for some reason, just feeling everything more than normal. My ride the other night of 50 miles was a bit windy and for some reason no matter what direction I travelled the wind was in my face. I thought about some of the posts and realized how life can be like that. I made a cycling cap, 1 side says Ride Hard ! (that's the only place that will happen) the other side days F___k Cancer, under the cap is the serenity prayer. I can be all over the place sometimes but those 3 things summed up my process after my dx.

Patrick-Turner profile image
Patrick-Turner in reply totreedown

50 miles at night? that's 80km, not bad. I know all about head winds that seem to be against you no matter which direction you go, but mostly that is because wind swirls around things and a cross wind one way is a cross wind the other way. But yesterday it was windless here; the local Lake had not a ripple on it, and flags didn't flutter in any breeze, so I got a fairly good time for my efforts of 65km. We all wear cycle helmets here, and a F___k Cancer sign might be considered a tad uncool. I have addapted well to effects of Pca, and it really meant I had to addapt to effects of treatment to keep it under control. I've watched so many ppl die younger around me so I guess I am lucky. So many had lives of far worse struggles so I am double lucky.

Rainy day here now, I'll get into shed soon.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

My mistake, it was later and stays light until almost 9:30 pm so it was not dark. The cap is under my helmet so unless I forget nobody sees it except friends. Of course I don't see much of anybody these days. I love those calm days but being coastal they are more common in the winter here. I thought you mentioned a blog for your crafts or am I confusing things, I do that more these days?

Patrick-Turner profile image
Patrick-Turner in reply totreedown

My website about old electronics is turneraudio.com.au

I have a page "Patrick's Concerns" which describes my path in life with Pca, including Psa graphs going back more than 10 years.

Ah, so there's enough light to cycle up to 9:30pm?

Would be a bit too dark here, and I'd need real good lights on bike for unlit bike paths and to avoid crashes with other cyclists without lights, or crashes with kangaroos.

I prefer to leave for a ride at 6am on a day where T may rise to 40c. Back home by 9:30am.

But in autumn and spring ( just around the corner now ) I leave home earlier, but can cycle longer and have lunch / coffee elsewhere.

I kinda have my life fairly well sorted out.

Patrick Turner.

Kaliber profile image
Kaliber in reply toPatrick-Turner

Hey buddy ...good for you for not being on palliative care yet. That’s an envious good place to be. I hope you can hang onto that for a long while .... maybe forever. That’d be kewl. ( I hope you meant palliative care and not hospice )

Peace brother 💪💪💪✌️✌️✌️

larry_dammit profile image
larry_dammit

I hate these dreams, I’m on MsCotin ( morphine) and I have the worst dreams almost every night. Only thing I can say is I’m on the right side of the grass. 4 years and counting. Fight that monster 🙏🙏🙏

in reply tolarry_dammit

🙏

dpowellnt profile image
dpowellnt

These drugs and disease play with our minds relentlessly. I've had PC now since 2015. But before that I had Carcinoid Syndrome for 30 years (since I was 34). I had two Chemoembolizations on both lobes of my Liver. You can read my bio for the whole story.

With Carcinoid the drugs took my dreams away. For 30 years I dreamt very rarely, and as soon as I woke up I could not recall anything. I will tell you, dreaming is better than not dreaming at all.

During my Carcinoid years I was told that I had 4-6 years to live so many times that I forget. In 2001 my Carcinoid began to accelerate. I went to a famous doctor in OHSU and he put me in the hospital for 10 days every month for four months. He gave me a new treatment he had devised. It was basically for terminal patients. It involved an infusion directly into my liver of 10 times the normal amount of Chemo. I lost 40 pounds. I had to be taken to emergency when I was outside the hospital several times. I survived the treatment. Out of a hundred who participated in the trial, 92 did not survive.

While I was in the hospital I had numerous roomies. All were PC sufferers. I remember two the most.

First there was a Hell's Angel biker. Thin, crude, and irreverent. We had a ball. He faced his demons with humor and courage. I will always remember him. I am trying to face PC with the same sense of life he had.

The second was an elder of a church. He cried all the time it seemed. He had a group of other church members come one day and they formed a circle and prayed. His constant lament to God was, "Why me?" I've always wondered why he was so opposed to transitioning to heaven. How can you be a Christian, and be so scared of death?

So I have had a really LONG time to think about death, and how to handle its eventual chapter in my life. Now off the Carcinoid meds, I dream again. I am enjoying the experience.(my famous Doctor said, although the Carcinoid is still there wrapped around my liver, it is dormant for now, and 30 years of chemo drugs will no longer help anyway).

Someone once said about God, that he believed in God because if he was right, it meant Heaven. And if he was wrong, it wouldn't make any difference.

That is pretty much my philosophy. If there is nothing, I won't know it. However, if there IS something, what an adventure! My life experiences point to there being something, so I ponder and am not afraid.

Oh. To answer your question on sleeping and dreams. Pain does cause nightmares, I will attest to. Take some Cannabis oil\tincture before bed and you will sleep pain free and deeply. You can take it with any of your meds as it does not conflict.

Zetabow profile image
Zetabow in reply todpowellnt

Thanks for the reply. I never really remembered my dreams when I was younger and rarely did I ever have any bad dreams so it's kinda strange to start now.

My character is pretty laid back with good sense of humor and had a few close calls with death when I served in the military, I always felt when it's my time to go it's my time and the only thing you can control in death is your dignity. My Dad died of cancer at 58 and his Dad 55, so when the Oncologist said Stage 4 and I'm 55 years I just thought, "Typical, must be a family curse not to reach 60 years"

I'm not religious, my consciousness was nothingness billion of years before I was born and I return to that nothingness when I die, I don't fear or need the thought of a Heaven to deal with death, I suppose in some ways I look forward to not being in pain anymore. The only thing that keeps me fighting is my Wife and boys, to be with them as much as I can (10 and 9 years) to share some precious memories.

My biggest fear is losing my dignity and control in my last few weeks. It kinda makes sense about the opioids messing with my dreams, and feel better that I have a logical reason, I will talk with the pain specialist on Thursday.

Thanks again

Kaliber profile image
Kaliber in reply todpowellnt

Kewl post brother .... 💪💪💪✌️✌️✌️

treedown profile image
treedown in reply toKaliber

Agreed

Patrick-Turner profile image
Patrick-Turner in reply todpowellnt

Well said, I had motorcycles from 18 to 33, and I was basically a temporary citizen because risk of death was so high. I worked on building sites. Shyte could happen any time.

I began to stop bothering God at 17, and have since concluded that any idea about any kind of god is merely an imagined spiritual entity which allows us to cope better against uncertainty, and the struggles of existence. But I never could accept the communal agreement on God ideas, and I just concentrated on being a good man according 7 virtues, and avoiding 7 vices, and getting some guidance from 10 commandments, and just leave out anything imagined, such as God, Heaven, Hell, and all theological matters which were not really about God and sure were not logical. The Old Testament and New Testament does have some guidance, but I can't accept the miracles. I could not see how Jesus arose on the 3rd day and ascended into heaven - without a rocket, space suit, and good oxygen supply. So I guess Jesus's bones have been lost, and I can do without the abundance of fake info in Bible, written to make ppl subservient to Church hierarchy.

I quite liked taking some oil derived from low yield Sativa in 2015, over an 8 month time in hope it might reduce Psa. It had zero effect. But the nightly high for 8 months was pleasant, no paranoia, no addiction, and sleep was good, although I still woke up 4 times a nite to pee.

Don't touch high THC Indica, because THC can cause mental bothers. CBD oils are OK, and yet I found out out bodies make chemicals just like CBD.

I've been cycling a lot since 2006, and the risk to life is always present like it was on a motorcycle, but cycle speed is much lower, so I don't fear crashing like I used to.

Cycling has kept me fit and healthy, because I must use my own muscle power to go somewhere, and presently for 200km per week. I also do drive an old small 1986 car for local shopping.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

I am with you on the cycling, though its summer and 80 degrees here.

Patrick-Turner profile image
Patrick-Turner in reply totreedown

Well, it was -5C here this morning, so well below 32F.

But I'll be talking to my onco in an hour by phone, then I'll be off on a good ride regardless of whether Psa has gone up or down since last Psa of 30 just before I had 5th shot Lu177 at 2 weeks ago. When I had first 4 shots of Lu177 about 18 months ago Psa at 25 did almost nothing for first 2 shots. But at least it stopped rising.

This time it could do a similar thing because it takes time for Aunty Lutetia to borrow her way into my bones and chisel away at the foundations of bone mets using her beta particle chisel, guided by her companion Mr PsMa Ligand. Eventually, the mets will collapse, and leave a void, and rest of my body will cheer, and repair the hole with new bone.

It was Late summer when I had second Lu177 last year in Feb 2019, and I astonished myself by cycling 960km over a 3 week period. That was entirely unnecessary, but I felt rather well. I am in my shed more now doing craft work , and its too cold for early morning rides, or being in my shed, but after I talk to doc soon I'll be on the bike and off across town, and to see what the day brings. And have some nice lunch out some place.

I am very lucky C19 is the least of my worries where I live in Canberra. But in the state of Victoria south of here, things have gone bad, and they are having many infections, and strict lock down is underway, and police are having to deal with some very angry ppl who don't like being locked down. So many ppl are getting C19, but are spreading it. Be awhile before a vaccine is ready.

Always look on the bright side of life,

Take care,

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

Enjoy, what crafts do you enjoy? I ride year round as well but we rarely get below 32 F. It is OK because I can wear rain gear and not get wetter inside from the sweat. Here's to us both being active when its summer there and winter here.

Patrick-Turner profile image
Patrick-Turner in reply totreedown

I am into old fashioned electronics with vacuum tubes. I am currently rebuilding a naughty regulated benchtop PSU after all the solid state voltage regulation devices went phut, despite their fabulous spec ratings, and am making 1.6kW power tranny to give me 0V to 1kVdc to test tubes, with 50Vdc step adjustment, and no solid state. Like they did in 1955, only better.

I gotta phone doc in 5 minutes.

Keep well, and I am in lycra all winter, just extra skivi and long leg lycra for winter.

Patrick Turner.

Patrick-Turner profile image
Patrick-Turner in reply toPatrick-Turner

I'll now extend my reply to treedown by adding to my reply above......

I just had 15 minutes on phone to my onco, and latest Psa is 17, down from 30 just before last Lu177 shot about 3 weeks ago, after having latest Lu177 shot 2 weeks ago.

So I have good news for myself, and perhaps for all who are considering Lu177 theranostic treatment. Things are looking hopefully positive here, and geneticist is booked in and maybe PARP drugs will also help, so onco does not need to talk to me again until October 1 because I am now patient for my doc giving Lu177.

Please have a glass of wine tonight with your dinner, and try not to feel sad.

It's still too cold to cycle, but after lunch it will be quite sublime, sunny, not a cloud to be seen, and no wind, and rain is forecast for tomorrow, and unlike 1955, forecasts for rain are remarkably accurate these days.

Bicycle is impatient in my shed. Craft work can wait, good on rainy days.

Please do not do anything I wood knot enjoy :-)

Patrick Turner.

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

My nightmare was that I finally had an huge erection but had forgotten what I was supposed to do with it.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 1:51 PM DST

SeosamhM profile image
SeosamhM in reply toj-o-h-n

Only j-o-h-n! Someone HAS to give that a thumbs up....so let it be me.

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

Thank you..... I was starting to think that my posts were in invisible ink....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:17 PM DST

SeosamhM profile image
SeosamhM in reply toj-o-h-n

Yah - us in the Class of 2016 are friggin' FUNNY....

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

We are Senior Seniors (graduation soon)...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/04/2020 6:38 PM DST

Stevana profile image
Stevana

Hello Z, sorry to hear about your troubles with pain meds. I’m new to this forum as I was dx'd stage 4 metastatic this past March. Fortunately I am currently asymptomatic. I regularly read these posts to get some insight on what path my PCa journey will take me. You indicate you are at end-stage with your decease. I checked your profile to see when you were dx'd and what treatments helped extend your life thus far. Unfortunately you haven't, as yet, provide any profile information. If you feel up to it I for one would be interested in hearing your PCa story. I pray you will have a safe and pain free journey going forward. All the best.

Steve

Zetabow profile image
Zetabow in reply toStevana

I'm 19 months into my journey and have been in a lot of pain from day one, the Chemo-ADT got my PSA from 1386 down to 0.028.

But Feb of this year my PSA started slowly rising, it was 52 last month. I'm on Radium 223 at the moment, which has helped with pain management. I had subcapsular orchiectomy last Nov, Oncologist said I had a better chance of survival, so I didn't hesitate, amazingly I can still have sex, it's the pain that holds me back, all I can say is my wife must be hot lol

At diagnosis I was in a bad way, my scan shown nearly every bone with Mets and marrow invasion of both Femurs which is where the most pain is, Oncologist gave me a pretty poor prognosis at diagnosis and my medical team have been amazing by not quitting on me so I'm not quitting on them.

Guys I don't know how you can ride bikes, I jumped on a bike last Summer to go to local shop with my Boys, I was 100m in and I figured it wasn't a good idea, the pain in my Femurs was horrible and got off.

Stevana profile image
Stevana

Z, thank you sharing your journey. Your attitude is inspiring. I know it’s not good to compare, but by way of sharing my condition, I was dx’d this March with andenocarcinoma stage IV APC. My Gleason score was 9 with nine of the samples rated 9, the rest 8, with one 7. I have multiple mets, but most are in my LNs and surrounding pelvic area. I do have at least four bone mets in ribs and spine area with one on the right occipital skull bone. To my good fortune I am asymptomatic at this point. My highest PSA so far is 7.8 but is now at 0.46 after four months of Firmagon shots. My T level is <3.

I start docetaxel next week and as part of a clinic trial will also receive an immunotherapy drug called Opdivo (nivolumab) during and for up to 24 months after chemo ends. As long as I remain pain free I will continue to exercise, watch my diet and stay optimistic. Thank you again for sharing and inspiring. God bless you as you continue your fight with this dreaded decease.

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