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The Road of Certain Uncertainty

User
Posted 12 Dec 2014 at 20:10
The Road of Certain Uncertainty

When I was a boy, I thought I would live forever. As a man in my 20s, I was told by a fortune teller that I would live till I was 104. In my 30s I didn't give a 4X because life was good. In my early 40s, I revised the lifespan figure a little more in line with my expanding waistline and general unfitness to a respectable 80. When I was 47, my aspirations were curtailed somewhat when I was diagnosed completely out the blue with prostate cancer. Cancer was not in my family. My father was 80 and in rude health and my nan lived until she was 100. By the time I had reached 50 and my cancer had recurred, I grasped at straws by looking to achieve a bus pass and by last year's birthday, my 52nd, had to revise it yet again to an ambitious 60 as the hormone therapy failed to halt a rising PSA.

Many of you will have read the very excellent Rocky Road analogy a while ago before our friend Spurspark passed on to that great patient's waiting room in the sky. In the early days, his words and advice, although not related to my then situation, were of great comfort. Well, I'm on my own path now. One of my own very certain demise but with an uncertain and unpredictable dateline so it is my turn to offer my own analogy of what it is like to reach this stage in the hope that it gives peace, some clarity and succour to others. My oncologist is too afraid or too canny to tell me exactly what my prognosis is but as a hormone resistant patient (I hate the word fighter despite the indisputable fact that we all fight this b*****d disease), I have limited options and have, despite always believing I could overcome my cancer, now reluctantly accepted my fate. In the early days following my initial diagnosis, I was in denial. After surgery, I was in denial too and the same following salvage radiotherapy and ADT. In fact until very recently when I was told that my cancer had never ever responded to hormone injections, a continually rising PSA despite all treatments and now had the bleakest of bleak outlooks, certain death before the age of 60, I was still in denial. Now, if I lived in Egypt, I would actually believe that I was rapidly drowning in the Nile!

When I was 16, my great Aunt Flo died. Before she popped off her mortal coil she told her sister, my nan, that if there was another existence after this one, she would come to her via a medium's hearing with one word, "Acceptance." My nan sadly never heard this word until the day she died herself, but I have carried the mantle on her behalf and believe that instead of hearing the word acceptance, it is actually a state of mind the sick and the dying acquire once all hope of a cure is lost. In my case, denial has transmogrified into a form of acceptance of my fate and that, now, this acceptance has released me from the despair of worrying about the disease spreading as it had done the last year or so to live the rest of my days enjoying what I have now. My mantra has become: accept your fate Barry graciously for all you ever need is now - and noone's the future can never be guaranteed, least of all your own. Each persons' mould is cast from birth and there is no average. Just the luck of the genetic draw.

Prostate cancer hits men at all different ages, stages of life and with varying degrees of treatability. What man A has will never be exactly the same as man B and so the disease in this respect is distinctly unique. In the early days, the newly diagnosed will, quite rightly, grasp at the finest straws of positivity, seek knowledge from those in broadly similar situations and solace in the experience of others who have been through the inexorable mill on stage treatments. In time, if the cancer has not been caught early enough and they are one of the ones unlucky enough to remain undetectable, they will sadly enter the doors of that dark, satanic mill themselves and begin the journey on what I refer to as the road of certain uncertainty, that infamous 'rocky road.' At times, even if accepting of one's fate, one will often feel invincible even in the early stages of incurable disease, or in control when the drugs and treatments are working. Conversely, they will often, too, tend to delve into varying degrees of sadness, hopelessness or for the weak of spirit, depression or similar as treatments fail.

For the majority of my own particular journey, one that is unique to me and that no reader of this forum will ever truly share in exactitude, there have been days of deep, dark depression and seas of tears for the injustice of it all and the unfairness of knowing you will die much younger than Madame Fleurie once prophesied. It has, until recently blighted any optimism I was told I should try to exude and ensured that the cancer was beating me both psychologically and physically. However, now that I have reached that certain point in this very uncertain journey, the fulcrum that lay between curable and incurable, I am, albeit reluctantly and mightily hacked off simply because I wanted to notch up just a few more life events, much more accepting of my situation. It is this 'acceptance' that I believe my dear old Aunt Flo spoke of before she died. That acceptance of the once unacceptable but now clearly unavoidable. That drive towards the cliff of our own mortal lifespan where the brakes are failing but the engine still rolls along. It is, I believe, the rocky road that Spurspark once eloquently spoke of but which has now become my very own - that road of certain uncertainty. Once impossible to live with, it is now a little more palatable having tried and failed all the treatment options and is, for me at least, allowing me to get on with the job of enjoying every precious moment with the woman I love, the children I would take a bullet for and this life which I once thought would last forever but clearly will not. I urge all of you, whatever your fears, your anxieties and concerns, whether Gleason 6 or 10, T1 or T4, a newbie or an old hat, to live for the now and fill it with every joy you can, whether that is travel, a bucket list, drinking the finest wines and beers or simply dunking a huge wad of your favourite biscuits into a hot mug of tea. Life, for all its pleasures, simple or otherwise, is there to be relished, not be complacent with. For as death always wins in the end, taking the maximum joy, whatever your predilection, should always be your aim every day. God bless you all. (Bazza)

Edited by member 04 Aug 2015 at 10:30  | Reason: Not specified

User
Posted 13 Dec 2014 at 00:48

Hi Barry,

Clearly you have given this a lot of thought and revised your thinking more recently as treatments so far have not worked for you. One hopes that some further medical intervention will extend your remaining time but realise that even if this should be the case, it is unlikely to make a substantial difference in time-scale unless there is an imminent breakthrough. You are absolutely right in your summary that as time runs short we should make the most of it todo those things we always wanted to do as far as practicable but never got round to doing. It is understandable that one should think 'why me' but health, as life is a lottery which has been grossly unfair for so many. Those alive in the UK now, have in general had the opportunity of a comparatively good life, even if for some life expectancy has been reduced. Consider all the terrible hardships and grinding poverty and early death that was the experience of many of our forebears and indeed is still the case for many in the world at large. Of course even now there are those in the UK who have experienced pain and disability over many years so life has been hard for them. Therefore, whilst reluctantly accepting our fate, perhaps we should feel that in some respects we have have been fortunate to enjoy many things, in so many ways, denied to so many people and and feel that we could have had a much worse deal.

Barry
User
Posted 13 Dec 2014 at 00:51

My friend, you know I am a hard hearted soul yet I have found your words so difficult to take in and so heartbreaking to read. I have always known instinctively that your fear and depression was much darker than many here could ever contemplate or understand, and that the jolly 'you'll be fine' approach was not helpful.

You are wrong though about the Rocky Road - it was our dearest Spurspark who wrote so powerfully and he (like you) was delivered the cruel hand of a cancer that hit hard and young and never behaved the way it should have. I think that now in your acceptance, you are truly stepping up to his mantle in your ability to communicate the most personal and powerful of emotions. I am quite sure your wife and children would take a bullet for you and I might not go that far but I would gladly wrestle the gun off the baddie for you if I could.

Live these moments, my friend - find comfort and strength in the words of men like Spurspark, Nimeton and TopGun.

Lyn xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jan 2015 at 19:35

"  but on this road of uncertainty, there can only be one ultimate course, that of certainty in the progression of my disease as I continue to fail to even respond at all to HT and suffer frighteningly fast PSA velocity rises."


 


So you can stuff that thought in the bin Bazza. Whichever,( Casodex addition or better Prostap admin ), you are still HT responsive.


Just goes to show that there are no set rules & one should not jump to conclusions.

User
Posted 08 Jan 2015 at 20:42

My money is on the likelihood that the jump in PSA last time was erroneous, a direct result of the failed Prostap injection. So very happy to see your update today Bazza.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 12 Dec 2014 at 22:56

A very good read Barry, we all need something to look forward to, whether it be booking holidays, or watching the children / grandchildren grow up, we need a goal. I like your "or simply dunking a huge wad of your favorite biscuits into a hot mug of tea."

Blessings,
Chris.

User
Posted 12 Dec 2014 at 23:14

Thanks Barry, I think the longer we are with this group the more we realise how precious time is

Sent you a message

Bri

User
Posted 13 Dec 2014 at 00:48

Hi Barry,

Clearly you have given this a lot of thought and revised your thinking more recently as treatments so far have not worked for you. One hopes that some further medical intervention will extend your remaining time but realise that even if this should be the case, it is unlikely to make a substantial difference in time-scale unless there is an imminent breakthrough. You are absolutely right in your summary that as time runs short we should make the most of it todo those things we always wanted to do as far as practicable but never got round to doing. It is understandable that one should think 'why me' but health, as life is a lottery which has been grossly unfair for so many. Those alive in the UK now, have in general had the opportunity of a comparatively good life, even if for some life expectancy has been reduced. Consider all the terrible hardships and grinding poverty and early death that was the experience of many of our forebears and indeed is still the case for many in the world at large. Of course even now there are those in the UK who have experienced pain and disability over many years so life has been hard for them. Therefore, whilst reluctantly accepting our fate, perhaps we should feel that in some respects we have have been fortunate to enjoy many things, in so many ways, denied to so many people and and feel that we could have had a much worse deal.

Barry
User
Posted 13 Dec 2014 at 00:51

My friend, you know I am a hard hearted soul yet I have found your words so difficult to take in and so heartbreaking to read. I have always known instinctively that your fear and depression was much darker than many here could ever contemplate or understand, and that the jolly 'you'll be fine' approach was not helpful.

You are wrong though about the Rocky Road - it was our dearest Spurspark who wrote so powerfully and he (like you) was delivered the cruel hand of a cancer that hit hard and young and never behaved the way it should have. I think that now in your acceptance, you are truly stepping up to his mantle in your ability to communicate the most personal and powerful of emotions. I am quite sure your wife and children would take a bullet for you and I might not go that far but I would gladly wrestle the gun off the baddie for you if I could.

Live these moments, my friend - find comfort and strength in the words of men like Spurspark, Nimeton and TopGun.

Lyn xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Dec 2014 at 09:48
Barry I have missed your literary skill, having read your story via your web page a litte at a time to Mick when he was so ill he often said that he would have been "bloody chuffed" if he could write so eloquently. Of course that was the story of your journey through diagnosis, surgery and early treatment. It dealt with your darkest hours, saddest thoughts and all the fear this horrid disease brings.
I read this latest posting, alas, now only to myself and cried, great big tears that I just could not stop. I think Mick also knew what your Aunt Flo was meaning with her word "Acceptance" He tried his very best to enjoy as much of the time he had after diagnosis even though nothing worked for him at all. He had no respite no period of remission and just 12 months to fight as hard as any man could. He never complained but that I think is because he "accepted" as soon as it became obvious this was one battle he could not win. That helped him to show no fear, enjoy time with me, our friends and family.

I know for sure that if he could he would reach down right now and shake your hand with real firmness and genuine warmth for putting into the perefect words what he would loved to have been able to say.

For that I thank you and I hope you continue to post and tell us about all the fun things you experience along the road that you are travelling.
xxx
Mo
User
Posted 13 Dec 2014 at 12:23

Hi Barry,


 


Thanks for your brilliant and heartfelt post. Like Mo, it has reduced me to tears though it doesnt take much for that. Must have cried the equivalent of a river the last twenty months. Like Mick, Neil was in that 'nothing worked for him group' though I still wish his treatment had been more enlightened from the start.


When we get newly diagnosed men on the forum, I fight shy of posting to say there's this wonderful treatment and that out there because for some men nothing does seem to help and the 'wonderful treatments' are dependant on money,guidelines and whether your care team fights your corner.


That said, this damn disease has also devastated my life and I am determined to keep on raising its profile, giving money to cancer charities and trying to support the local PCa group, anything to try to alleviate the helplessness I felt when Neil was ill.


Keep on inspiring us, your words have clearly touched many people !


 


Fiona.

User
Posted 13 Dec 2014 at 17:51

Hi Barry,


Thank you for that post.


When you talk of acceptance I think of an old prayer, apparently attributed to St Ignatious, which went something along the lines of "Lord, give me the courage to change the things I can change, the serenity to accept the things I can't change and the wisdom to know the difference".


Personally, however good I am, or am not, at the first two - I'm somewhat lacking in the last.


But I do keep in mind that however bravely I might fight PCa at the moment, it could come to a point where I just have to leave the courage thing alone and call on my reserves of serenity.


Just hope I have the wisdom to recognise that when it happens.


Kind Regards,


Patrick.

Life is a journey. You can't move forward on a journey AND stay in the same place.
User
Posted 13 Dec 2014 at 20:19
Oh Bazza
It's been a long time since anything much has moved me like your words here. I have been mortally afraid for four years now, down to a rotten prognosis but as you say, each of us are different and on a slightly different path., however much it seems we travelling the same road. I now think that your DNA is as Important as the Cancer type you have, That's the bit that makes the pathway you take unknowable (I think).

Please keep posting, it is postings of this quality that makes this forum very special.

Much love
Allison xx
User
Posted 13 Dec 2014 at 21:12
I will Allison, I will.

www.barrycashin.wordpress.com
User
Posted 13 Dec 2014 at 21:37

To write so eloquently about your condition and state of mind must be so difficult, yet it is such an emotional read. If only the odds were more in your favour.

It is so difficult for one who is a numbers person rather than a wordsmith to know how to reply. I just pray you get all the support and help you need for you to deal with whatever is thrown at you.

Paul

Stay Calm And Carry On.
User
Posted 13 Dec 2014 at 22:20
Thank you, Barry. By sharing your thoughts with us, you have made some of us feel less alone and overwhelmed by what life is throwing at us.
Marje
User
Posted 17 Dec 2014 at 21:05

OH Barry Thank you for such a wonderful post It truly is one of the best pieces of writing  that I have read on the forum in a very long time.


I read it a few days ago but I was so moved that I could not comment immediately . Truly moving and emotional , you are One brilliant writer. Thank you.


BFN


Julie X


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Dec 2014 at 22:03
Thank you for your post Barry.

Thank you also for the wonderful example you are,

Sending kindest regards.
User
Posted 22 Dec 2014 at 10:13
Just a quick note to wish every member on here, old, young, newbies, old hats, stage 1s to stage 4s, undetectables to the metastatic, doctors, nurses, surgeons, GPs, CNSs, support workers, community nurses, psychologists, volunteers and the staff of the prostate website a very happy, as healthy as a can be and extremely merry Christmas - whether your predilection is brandy, fine wine, beer, or simply that hot mug of tea I talked about in my post. May love surround you, bravery fortify your soul and courage be poured in large measure for those who need it. Cheers! Bazza
User
Posted 22 Dec 2014 at 23:08

Well said Barry and here's hoping you and your family have a lovely Christmas

Bri

User
Posted 24 Dec 2014 at 07:19

Hi Barry,


A very moving post, thank you ,I do hope something turns up for you.


Have a good time with your family at Christmas

User
Posted 29 Dec 2014 at 02:48

XXX

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2015 at 20:52
So we begin the new year with whole host of certainties. Certainty number one is that today, I had my four weekly PSA. I go for a second opinion on my status tomorrow at another hospital and then back to Guys on Thursday for the PSA results. Despite being on an MAB for a month, the realist/pessimist in me just knows that here will be certainty number two, a rise in my PSA. Time will out, as they say, but on this road of uncertainty, there can only be one ultimate course, that of certainty in the progression of my disease as I continue to fail to even respond at all to HT and suffer frighteningly fast PSA velocity rises. I pray, however, that this is not the case. I can handle the weight gain, the flushes, the emotions, the seriously debilitating gynocomastia. What I find so difficult to comprehend though, despite having accepted my fate, is how I can feel so physically good (irrespective of the HT SE's), yet have such a damning prognosis. Does anyone have a direct line to the Almighty to ask how I can be told I might be dead in 18 months!?

Bazza (Barry)
User
Posted 06 Jan 2015 at 22:24

"Does anyone have a direct line to the Almighty to ask how I can be told I might be dead in 18 months!?"

Don't personally Bazza, but if you do find anyone who does could you let me know please as I have a few questions of my own.

Good luck tomorrow and best wishes for the rest off your journey.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2015 at 16:32

Hi Barry,


Below are the findings from a resent study in Belgium, i really am unsure about your 18 month prognosis,


My Onco gave me 3 - 4 years if all treatments worked for me, i have a £20 bet with him that he is wrong. i will be that <1% http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Hope today went OK


Si


 


 


Metastatic prostate cancer without bone metastasis:


one-year survival: 87 percent
five-year survival: 56 percent


Metastatic prostate cancer with bone metastasis:


one-year survival: 47 percent
five-year survival: 3 percent


Metastatic prostate cancer with bone metastasis and skeletal involvement:


one-year survival: 40 percent
five-year survival: less than one percent

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Jan 2015 at 00:15
Beautifully written Barry.

Life's a Marathon. Run in peace.
User
Posted 08 Jan 2015 at 06:30

Thinking of you today Barry. All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Jan 2015 at 16:01
So, after a full blood test on Monday, it came to pass that the uncertainty in the road ahead has levelled somewhat. In fact, it hasn't levelled, it has positively fallen down a steep slope. From a PSA of 1.86 last month, it has now significantly decreased to 0.37. My onco's smile said it all. I know this is a war I will probably lose but the enemy took a right effing kicking last month. Maybe it was the fact that my HT injection was administered properly unlike two months ago when my GP nurse at the local surgery Injected Prostap all over the floor. Maybe it's the addition of Casodex or maybe it is the Zum Zum water I've been drinking, a gift from a very dear Muslim friend taken from the sacred spring and reputed to have curative properties. Maybe it's the excessive amounts of strong coffee I've been drinking or all that fat and alcohol over. Christmas. Whatever it is, I count my blessings, look forward to a slightly longer period between blood tests and can now properly toast the New Year in. I thank you.

God bless all.
User
Posted 08 Jan 2015 at 16:14

Excellent news. Uncertainty of the right kind. Well done!

Paul

Stay Calm And Carry On.
User
Posted 08 Jan 2015 at 16:35

Bazza, that's really good news and a great start to 2015!  Hope it strengtens your resolve!  Onward and Upward (except for the PSA!)


Flexi

User
Posted 08 Jan 2015 at 16:55

Brilliant news, definately down to the excessive fat and alcohol !


Regards, Fiona.

User
Posted 08 Jan 2015 at 17:36
Bazza,

That's really great news. Really pleased for you. What a fantastic way to start the New Year.

Steve

User
Posted 08 Jan 2015 at 19:35

"  but on this road of uncertainty, there can only be one ultimate course, that of certainty in the progression of my disease as I continue to fail to even respond at all to HT and suffer frighteningly fast PSA velocity rises."


 


So you can stuff that thought in the bin Bazza. Whichever,( Casodex addition or better Prostap admin ), you are still HT responsive.


Just goes to show that there are no set rules & one should not jump to conclusions.

User
Posted 08 Jan 2015 at 20:25
I don't know you Bazza but you are in a place where we all may be one day and today's news tells me that I must never give up, if ain't over till it's over. Keep fighting mate, 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 08 Jan 2015 at 20:42

My money is on the likelihood that the jump in PSA last time was erroneous, a direct result of the failed Prostap injection. So very happy to see your update today Bazza.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jan 2015 at 20:46
Absolutely delighted to read this update Bazza.

It just goes to show that the fat lady is not singing.

Love
Allison xx
User
Posted 08 Jan 2015 at 20:51

Really pleased for you Bazza. Relax and enjoy a belated New Year. Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Jan 2015 at 21:21

Brilliant news Bazza, whatever the reason for the drop long may it continue I can hear you buzzing from here.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Apr 2020 at 11:19
Was doing a search and found this amazing post from Bazza, what a star this guy is.
Keep fighting fella
 
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