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This is the life I have

User
Posted 07 Feb 2016 at 19:33
I bumped into an old friend the other day. One whom I’d not seen for many years. I asked how he was keeping as you do, and he replied, “fine.” He returned the question. I didn’t mean to shock him, but I looked him straight in the eye and said, “mate, I’m dying.”

My friend’s face drained of colour and at first I’m sure he thought it was some sick joke. Sadly, though, I was telling the absolute truth. You see, I’m dying of prostate cancer and have actually been battling it since 2010 when I was first diagnosed at the remarkably young age of 46.

I’ve had state of the art robotic operations, caught the bugger early, been free of it for eighteen months only for it to return – then I thought I had smited the cellular demon with six weeks of daily radiotherapy. I’ve tried anti-androgen tablets and been on monthly hormone injections for the past two years. Alas, it never went away returned like a bad smell in a room with a closed door, this time travelling through my lymphatic system and now, there is no curative treatment, just drug trials, different hormone cocktails, chemotherapy and then the long, long sleep.

Approaching my 54th birthday, it’s not what I had in mind for my middling years although I must add that since 2010 when the word ‘cancer’ entered the daily vocabulary of our lives, my wife and I have travelled like Michael Palin, from continent to continent, beach to beach and we have enjoyed city breaks throughout the bulk of Europe. Had I not known or at least suspected my fate back then, I would have no doubt meandered my way through middle age always planning for things to do tomorrow and never doing, which brings me back to meeting my old friend.

You see I’m not unique in this dying lark. My friend is dying too. I hate to say it but in the midst of your ordinary life you are also. In fact, the undeniable truth about life is that at the precise moment of conception, our fate is genetically sealed with the same outcome for each of us, just a different date stamp. I just happen to have drawn the short straw at birth and never knew about it.

Yes, I feel terribly sorry for myself, for the loss of my elder years, the loss for my wife and grown up daughter’s for the cantankerous old git that they will never know, the grandfather my daughter’s eventual children will never see. But somehow, in some peculiar, perverse way, knowing I will be dead within the next few years gives an inner power that someone, unless they are in that position themselves, will find impossible to comprehend.

My disease course takes away complacency in one fell swoop. It allows sharp focus on each day, gives impetus to plan, to seize the day, to make the best of life and do things now that, in the real world, we all under normal circumstances, put off until tomorrow. It is a strange quirk of the human condition that very few of us actually get around to doing the things we really want to until it is either too late or death takes away the opportunity. Getting cancer has kind of focused the mind. It is a gift of the most unwelcome kind.

Despite the drugs, the endless hospital visits, the scans, the regular meetings with oncologists, my life since diagnosis has taken on new meaning and, ironically, new contentment as well as occasional freneticism. Some in the same situation will wish to keep their “journey” a private affair; friends only knowing when they’ve passed away to gasps of, “Blimey, I never knew he was ill at all.” Others, like myself, who perhaps wear their hearts on their sleeve or are a little less private will want to tell everyone, as exposure is a form of catharsis if not cure for the perpetual mental torture this disease causes – for cancer now affects 1 in 2 of us. Yes, this insidious, crafty, very clever cellular leviathan will kill 50% of the population at some stage of their lives according to recent studies – and so it makes no sense in my opinion to keep quiet about it. I admire the way women have embraced their own particular nemesis, breast cancer, and so much strength and good has been created because women have proudly shouted their illness from the rooftops. I just wish that the male gender would shout just as loud about prostate cancer. There should be, in my view, equanimity between blue and pink.

To conclude, I continue and will always continue to fight the b****** going on in my body until it overwhelms me. I will vape, I will drink, I will eat dairy and enjoy great food. I will travel, I will soak up life’s new experiences like a child-like sponge, I will always seek out and experience new highs when I can. I will continue to love like I have never loved before and above all, I will make memories – for memories reflect the life you lived – they are the love you leave behind – they are the pictures that form in the mind’s eye when you are no longer in view. They are the whisper on the breeze when your voice is no more. They are simply priceless but cost nothing. I thank you!

Edited by member 07 Feb 2016 at 21:57  | Reason: Not specified

User
Posted 07 Feb 2016 at 23:26
What a marvellous post Barry. I look forward to many more over the years to come.

Roy

User
Posted 08 Feb 2016 at 11:26
Bazza

what an amazing post ..again. I have had to pull myself together before attempting to reply, as reading it made me cry.

Why did it hit my emotions so hard?, I guess because I read it a second time, but this time I read it aloud as if I were reading it to Mick, just like I used to read him a chapter of your internet blog most days in the latter part of his life. I could almost see him smiling and applauding he would have loved this too.

What you have done here is put into the most beautiful words what it is to have acceptance. Lyn is absolutley right I have messaged PCUK Sadie and asked her to read this post and to consider bringing back the stickies.

Thank you from the bottom of my heart for posting this wonderful conversation. I really do hope you are writing the book from your blog for as long as you can and that you will leave the script as a legacy for your family to get published. If you do please sign an inset sleeve for me as I will be first in line at Waterstones to buy it.

My very best wishes as always

xxx

Mo

User
Posted 09 Feb 2016 at 07:10
Bazza, last night I sat in hospital with my 85 year old father who was visibly scared having been rushed in with pneumonia . My dad has also had PCa for the last 10 years.

Reading your note this morning reminds me that there is so much I still want to do and has renewed my efforts to make sure I do it. My PSA has gone from0.38 to 4 in 3 months, I start on the abbi and a trial drug tomorrow but I am not going to sit and wait for things to happen and will try to continue to live yo the full. I ran 66 miles in a race over the weekend (67 as I got lost fir a mile!) and have my Sahara 156 mile race in 59 days, after that I will find somewhere else long and mad to run to until I can't even crawl as I won't give up either.

Here's to living in the fastest lane there is.

Take care

Kev

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

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User
Posted 07 Feb 2016 at 21:59
OH WOW Barry, I have read and reread for nearly an hour with my finger hovering over the reply button but what can I or anyone else possibly say to your post it is written so elequently.

It has simply taken my breath away and the only thing that I can think of saying is THANKYOU.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Feb 2016 at 22:16

This should be a sticky x

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

User
Posted 07 Feb 2016 at 22:18

What's a sticky Lyn?

User
Posted 07 Feb 2016 at 22:26

Hi Baza ,
Yes love reading your posts, hope we have many more of them,

Barry

Edited by member 07 Feb 2016 at 22:27  | Reason: Not specified

User
Posted 07 Feb 2016 at 23:14

Like the posts we used to have on the old forum that were marked (by the moderators, usually on request from members) so that they were always at the top of the list where everyone could see them. It is the thing I miss most about the changeover to this format :-(

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

User
Posted 07 Feb 2016 at 23:26
What a marvellous post Barry. I look forward to many more over the years to come.

Roy

User
Posted 08 Feb 2016 at 05:34

Barry, this is beautifully written as usual. You have a talent with words and your written word describing your journey with Pca will give courage and comfort to many . I too wish there was some way to have theses really special posts highlighted somehow so that everyone who is touched by this disease can have the privilege of reading them. Thankyou Georgina

User
Posted 08 Feb 2016 at 05:45

hi barry
your poat is amazing every word is true, love is the beginning and it is the end

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Feb 2016 at 07:38

Hi Barry
What a beautifully written post.Long may they continue.
You are building alot of happy memories.Showing your family how much you love them
And at the end of the day you will be remembered for that.

Garry

User
Posted 08 Feb 2016 at 07:56

Barry,

Thanks for your honesty and eloquence. I wish talking about dying was more open. For the time Neil was ill, I felt I was walking with death, I still do ! I'm not a good prospective invite to a party.. I talk enthusiastically about death and good end of life care. I'm lucky to have at least one good friend who also talks openly and honestly about life, our end and how, if possible, we'd like to get there ! Snce Neil died, what little religous faith I may have had has long gone in part due to the cruelty of his death and a harsh realism. Live whilst you can and enjoy it, within the parameters that are comfortable for you. May you continue to consume many a cream cake for as long as possible !

 

Fiona.

User
Posted 08 Feb 2016 at 08:12

Barry
You've summed up loads of how I'm feeling at the moment. I didn't know whether to clap or cry when I read it so I did both. I'm on an extremely similar course and was also young at 48 , however I didn't get any respite after surgery at all and also had it in my Lymphs. I've not got a clue how long I've got but in the immortal words of my surgeon when my PSA was 2.4 twelve weeks after the op " you are kind of in the s**t Chris". So I've been actively starting on those memories too but am hampered by a fear of travelling , restaurants , theatres , anywhere there is a crowd. But I'm trying for the sake of my 6 yr old boy. I don't want his memories to just be " my dad was awesome at Lego and air fix models".
But my approach is very similar to you , and even my best friend gp said start smoking if you want ( in a flippant way ). I'm not going to let it spoil my life even more by denying myself stuff. I try to be brave but it is there in your head each day you wake. I think that's the worse bit. I want to know what's happening and when so I can plan ahead.
Great post. Simply great. You take care
Chris

User
Posted 08 Feb 2016 at 09:06
Neither you nor the surgeon knows "when" Chris so my mantra has been, just do it. So, whatever you want to do, you just go ahead and bloody do it, NOW! For Now is the moment you, not the cancer owns.
User
Posted 08 Feb 2016 at 09:23
Like others I read and re-read this post.

It's absolutely fantastic .

It sums up so much that we as patients and supporters of us as patients have to cope with.

I'm fed up of hearing from people "it's only Prostate Cancer - it's easily curable and so many die of something else - you've nothing to worry about".

"If you're going to have a cancer then this is the one to have"

Well I didn't think so when I was diagnosed and told that, if left untreated I had 5-10 years to live.

I've now had 21 months of those years - 99 left ?

Ok, for many of us, we will survive PCa and maybe die of something else.

But until I am told that I am in remission I am treating this unwelcome 'thing' in my body with the upmost respect.

It's a cunning monster and I will do whatever I can to outwit it.

I am out to enjoy life to the full. I retired at the end of last October at 58. And I haven't looked back at all.

I didn't hate work - I fact I was happy there- but it was getting in the way of the things I wanted to do.

So good luck to each and everyone of us. Enjoy what ever you have .

And be happy for as long as you can.

I prepared myself for death upon diagnosis - the thoughts of what I may miss re family etc.

But I didn't actually read in details what in entailed until last month.

I found it chilling but cathartic too.

My Psa is stable for the second time at 0.2 now. I just hope that it doesn't start to rise.

I think that we all live in fear of recurrence.

But if it does then I know that there is this site .

And that gives me the greatest comfort.

Thanks ,

John

User
Posted 08 Feb 2016 at 11:26
Bazza

what an amazing post ..again. I have had to pull myself together before attempting to reply, as reading it made me cry.

Why did it hit my emotions so hard?, I guess because I read it a second time, but this time I read it aloud as if I were reading it to Mick, just like I used to read him a chapter of your internet blog most days in the latter part of his life. I could almost see him smiling and applauding he would have loved this too.

What you have done here is put into the most beautiful words what it is to have acceptance. Lyn is absolutley right I have messaged PCUK Sadie and asked her to read this post and to consider bringing back the stickies.

Thank you from the bottom of my heart for posting this wonderful conversation. I really do hope you are writing the book from your blog for as long as you can and that you will leave the script as a legacy for your family to get published. If you do please sign an inset sleeve for me as I will be first in line at Waterstones to buy it.

My very best wishes as always

xxx

Mo

User
Posted 09 Feb 2016 at 07:10
Bazza, last night I sat in hospital with my 85 year old father who was visibly scared having been rushed in with pneumonia . My dad has also had PCa for the last 10 years.

Reading your note this morning reminds me that there is so much I still want to do and has renewed my efforts to make sure I do it. My PSA has gone from0.38 to 4 in 3 months, I start on the abbi and a trial drug tomorrow but I am not going to sit and wait for things to happen and will try to continue to live yo the full. I ran 66 miles in a race over the weekend (67 as I got lost fir a mile!) and have my Sahara 156 mile race in 59 days, after that I will find somewhere else long and mad to run to until I can't even crawl as I won't give up either.

Here's to living in the fastest lane there is.

Take care

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 09 Feb 2016 at 11:35
Kev, I started this morning on Enzalutamide. May both our respective paths work for us, and for a long time. All power to your elbow.

As Freddie Mercury once sang:

Inside my heart is breaking

My make-up may be flaking

But my smile still stays on.

Bazza

User
Posted 09 Feb 2016 at 12:36

Great post Bazza,

Wish I was just a fraction as eloquent as you are at expressing your inner feelings.

My very best wishes to you for the future, whatever it may hold.

Luther

 
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