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Death & Pain - what do I fear about these two evils From the ultimate coward.

User
Posted 26 Aug 2018 at 10:25

After eight years, surgery, radiotherapy, hormones etc, I believe I have now reached that stage, if not quite yet, when my walk is downhill but without the pleasant breeze one usually feels after having worked so hard to get up the hill in the first place.

My PSA has doubled in three months to 23.78, having been relatively symptom free since 2010 when I had my surgery, I have now been beset with a conundrum of pain symptoms which makes me feel like I should, as the great Spurspark once told me, look death in the eye and if not a dual at sunset, at least look it four square in the eye and contemplate my fate.

Three weeks ago, I suffered from excruciating kidney pain but a scan revealed no infiltration. My lymph nodes have all been busy increasing in size and last night, I felt what I believed to be the start of bone metastasis - massive debilitating, tear-inducing pain in my left hip. I don’t do pain very well and feel ill-equipped, despite having lived with the spectre of PCa for almost ten years, to deal with what I inevitably must.

I now read with a morbid interest, stories back home of people who have stood down on the rails and let a speeding train end their respective misery. I, like Spurspark, have investigated Dignitas but have quickly clicked off the page when loved ones are near. Ive looked at overdoses, Googled “how to kill yourself painlessly” on the Internet and deliberated over all the possible ways I can, like a coward, avoid the pain that is a coming my way.

What have I deduced From all this? Well, nothing really. Each pain-free moment has taken my thought processes away from my reality and it is only in the throes of deep pain do I travel down these dark alleyways. Perhaps my dad was right when he told me many years ago after first diagnosis, that all I am is a coward. And so I have looked too at religion, prayer, begging departed loved ones for some respite, taken to mindfulness, imagined flowing with the pain - but nothing works. I am in a whirlpool of despondency, doubt, fear and mistrust of my future with worse to come. Just what can a man, a coward like me do?

These immense, albeit incremental changes in my life blight my day, cloud my night. I lay awake, either in pain or not, staring at the moonlight seeking inspiration, but inspiration’s cup has run dry. I have talked to the fairies, Jesus, Yahweh, Buddha and even Allah to seek some strength to deal with what the painkillers seemingly cannot do. This place. This place where I now reside is one full of regret and ironic thanks for the years post surgery that I have enjoyed - and terror of the unknown road to come. Nothing is lit with joy any more, just dark clouds of uncertainty Awaiting the next episode of pain. I am scared of pain. I do not like it. Who does? And I know of many, many braver men on this forum in much darker, more painful places than I - but this is my experience and experience tells me that I do not, will not and cannot handle pain at all well.

I feel a burden to my beautiful new wife. I feel unable to function as a normal happy go luck person who I once was. I feel pessimism for the day and week and month ahead. I feel hatred in my heart for what has taken so much energy and time trying to battle against. I feel the wheel of fortune has stuck on a black segment, permanently, and that the wheel will never turn for me favourably again.

I am not scared of dying, for we all will die. What I am scared about is the path dictated for me to get to that point. I am scared of losing my independence, my joy for life, my life itself.  I am the ultimate coward. As a man of words, eloquent many have told me, I find myself speechless in how to convey to you all just how rotten and unfair and horrible and painful this all is - Spurspark, Alathys, Barry and many others I have known well and conversed with have been much braver, more eloquent than I - yet I feel I must put digit to keyboard to let you know this is the new bus stop I am waiting at on my inexorable journey to the afterlife - and it is not a good place.

This post is rambling. It mirrors my mindset, my thought processes, my every waking moment. It mirrors the black hole of fear that cowards like me domicile. In the early days when my PSA was undetectable, I felt I could take on the world, that this blight called cancer could not and would not get me. That my body was somehow impervious to the effects of cellular division - but deep down, years down the line, all I realise is now that it was a false dawn, a false illusion and that my cowardly body is as frail and as weak and as vulnerable as the next man’s. I do not know what the immediate future holds for me. I know not the speed at which my particular prostate cancer will claim me. All I ask, as a coward, is that it is as pain-free as possible and as brief, with interludes of peace, tranquility, normality With the woman I love

 

Thank you for listening. Thank those who reply for being there. 

Edited by member 26 Aug 2018 at 13:06  | Reason: Not specified

User
Posted 26 Aug 2018 at 13:29
Hi Bazza

I’ve read this a few times now and it is as eloquent as ever. I’m nowhere near your stage yet ( maybe ) but I too worry about impending death , yet at the same time manage to mostly push it to the back of my mind. I’ve said to my wife many many times that I’m not scared of dying. and that I’ve had a brilliant action packed life compared to many others , but I’m terrified of a long painful demise more than anything in the world. I was nearly in tears last night with knee pain which is unrelated to my cancer. It stops me being a fun dad to my 8 yr old boy , it makes me angry and irritable , and I lie awake in pain at night next to my wife wondering just where the hell my G9T4N1 cancer is , with a psa over 38 and doubling 12 weekly. It’s torture not knowing the future.

Bazza you are NOT a coward. Why are you a coward ?? You’ve taken every treatment course and that in itself takes a real man and a strong man. There aren’t many people on the planet who aren’t scared of severe pain. In my darkest moments of bipolar I’ve researched suicide. I’ve been close a couple of times - the first time a week before my RP. That makes me a bigger coward right ??

All I wish for you is what you wish for yourself friend. I’ve missed your posts and strength and support. May some god be by your side.

User
Posted 26 Aug 2018 at 14:22
Death, as you say, is inevitable for all of us.

Some healthy people still fear it because of the finality, rather than the journey to get there. Are they cowards for fearing the unknown?

I can understand your distress.

I can't feel your physical pain, I can't even fully understand your mental pain because it isn't happening to me

What right have any of us to judge you as a coward without the experience that you are going through.

Sort of the equivalent of Jesus (John 8 (1) ) saying "Let he who is without sin cast the first stone."

How many of us have ever despaired over a situation that was enormous to us but others can't understand what all the fuss is about?

You can't can you, not unless you are standing in that person's shoes.

A coward? Perhaps, by some definitions. But how many of those people who would say you are, would have called you brave for what you were going through a relatively short while ago.

We are our own judge and jury aren't we. We think we know how others will regard us, in your case because you feel you ought to be thinking and acting differently. Are you alone in dealing with how you think or are you just the same as the rest of us would be given the life you are suffering.

What does it make you?

Human, I reckon. Not superman, but just like the rest of us.

I really hope that somewhere there is something , or someone medical (do they have hospice/pain relief care where you are living now) who can give you the help and understanding you need.

I'm sure your lovely wife is as supportive as she can be. Would you really consider adding to her distress by giving up and leaving her alone now that she has found you again?

Have you explored all avenues, including hypnosis perhaps.

Hopefully, others like Chris will be along and be able to advise you, especially from a position that is foreign to me because I'm not where you are now.

Easy for me to say in my relatively pain free state, but please don't give up.

Best Wishes

Sandra

***********************

We can't control the winds - but we can adjust our sails
User
Posted 26 Aug 2018 at 14:28

HI Bazz 

Forgive the fact that I don't share your eloquence but I felt that maybe a response of any sort might be welcomed by you at this time.

You label yourself as a coward but to be honest you are voicing the not unreasonable fear that most of have of experiencing a painful death. I don't see this as cowardly as given the choice most of us would prefer to have a quite, pain free death.

You have said that as death is inevitable for all of us then you do not fear it which will resonate with many of us so the problem is how this plays out.

We are told that these days there shouldn't be any need for anyone to die a painful death but I can imagine that realising when you are at a point that the pain requires interventions that you associate with the onset of end of life care must be daunting.

I don't have any clever insights to help you with this as you have to decide about quality of life issues.

The one thing I would ask is that you don't seriously consider dramatic grand gestures. During service with the police and during accident investigation work I appreciate the affect that suicide has on relatives and others (such as train drivers) who are innocent parties but whose lives have been destroyed by the experience. Hopefully this will dissuade you from even contemplating these thoughts.

You are in a bad place at the moment but all I can suggest is discussing this with people who can offer practical help.

Kind regards

Kevan 

User
Posted 26 Aug 2018 at 15:54
If I recall your past posts correctly, you live in a fairly remote area of France, don't you? Perhaps this would be a time to consider returning to the UK so you have easy access to the hospice system which offers (to my mind at least) the best end of life care.

My very best wishes, whatever path you decide to take. I would echo Kevan's point about the effect that suicide can have on innocent third parties; I know someone who was forced to retire from his job as a train driver due to the trauma of hitting someone who jumped in front of the train he was driving.

Chris

User
Posted 26 Aug 2018 at 21:40
thinking of you.
User
Posted 26 Aug 2018 at 22:58

Hi Bazza,

So sorry you are experiencing pain and I do hope this can be largely if not totally alleviated by medication. Pain is something that those with advanced PCa are most likely to experience towards advanced stages and being so persistent robs men of some of the quality time they might enjoy even with advanced PCa. It is not surprising that dark thoughts can pervade and there may come a point where the pain may become so intense that a man will eventually feel that he cannot bear to go on. Individuals will have different tolerance levels to pain. It's one thing to encounter pain for a short time knowing that it will subdue but knowing it and underlying causes mean a man is stuck with it is something else. Nobody should judge such thoughts as cowardly but probably for most men in such a situation is inevitable.

Of course family and friends would be upset if a man did reach the point where he decided to end his life but I am sure that they would understand seeing what was driving him and it would distress them to see how he was affected. A man in this situation should know that he could have a lethal injection when he felt he could stand it no longer. Many of us feel that by exhausting various treatments we can delay death from PCa and hopefully die of something else. Certainly, the men you name, Spurspark, Alathys, Barry (Topgun) also Rob and many others we knew did their very best to fight PCa and not only for themselves but for the benefit of others.

I sincerely hope these are just thoughts in your case and that you will still be able to enjoy some quality time for a very considerable time yet

Edited by member 26 Aug 2018 at 23:41  | Reason: Poor spellchecker!

Barry
User
Posted 27 Aug 2018 at 07:42

Hi Bazza

i wish I could honestly say “I share your pain” but I don’t and can’t, as others have already said only you know what it is like to be and feel like you right now.

perhaps for you the end of the road is closer than it is for me, I don’t know, but it is still in the distance for us both. Today from what you have indicated you will have physical pain, bad physical pain and I can’t help there but in between the pain you will have time to think straight or do something that makes you or others smile. Like me I think you love your wife deeply so do things that will make her happy and not sad as that should make you feel good inside too.

take care mate, you are highly thought of by so many here and I am sure elsewhere , never give up.

kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 27 Aug 2018 at 09:46

Hi Bazza, you are still just as eloquent at describing your thoughts and how scrambled you feel your mind is.

All of your post is completely understandable.

I, along with many others I’m sure, also fear the advancement of the disease. I would be lying if I said I didn’t at times contemplate ending things. But I am aware of the devastating effects that way out has on those who love us and random others.

Reading your profile again reminded me of what you said about how you were going to live your life after diagnosis.

I have tried to make that my mantra.

Try to get some decent pain relief through whatever medical help is available and then go on, and quoting you:

”in my case but I'm fcuking going to enjoy my life while I can. That's how you beat cancer, not by overcoming the disease because it mostly often wins - but in making sure the rest of your life has value for you and your loved ones.”

Cheers,

Ian

Ido4

User
Posted 27 Aug 2018 at 19:18

Hi Bazza,

Just read through for the fourth time,

I agree with you , its easy to say everyone dies when it is about 2/3 years away, but when you get on

the down hill stretch its not so easy.

My cancer came back June 2017 tumors in spine, hip and right shoulder ,had six chemo then back on Prostap

but now getting severe pain in hip and lower back, next appointment 13th Sept I am not looking forward 

to it , even though I am Seventy in four months it is not easy to bear.

Good luck

Barry

User
Posted 27 Aug 2018 at 21:50

Bazza

i was diagnosed at 46, two years ago.  I’ve just had salvage radiotherapy.  In my darker moments, I am resigned to the fact the PCa will eventually win.  i, too, have looked at Dignitas etc. Added to my fears of a painful and slow death, I worry about my children if I die young.  Also, I grew up in and ultimately rejected a very strict religion, so now I’ve started to think about the afterlife too.  All in all, it’s pretty crap having this illness.

your fears are legitimate and I am grateful to you for sharing them.  I do hope that you have more time than you may get fear, and that most of that time will be pain free.

 

Ulsterman

User
Posted 28 Aug 2018 at 11:40
I am not having this Bazza; you are rehashing things that are long gone. Your dad was a first class prat and your family less than supportive - you moved yourself away from all that negativity so that you could hopefully have some happy years before you leave this earth.

You did not feel bone pain - your last scan was clear and new tiny mets (even if you had any) would not cause that kind of pain.

Walk, drink wine, keep talking, keep posting. But try not to go back over old stuff that you cannot change - the choices you made were right at the time and the things that were said to you were cruel - you don't need that kind of tihs x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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