15 years on (continued)

User

Posted 22 Jun 2014 at 22:10

Barry

I wish I could have got more time to speak to you but you were very much in demand http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif. A good soldier and a true patriot (loved the outfit), I sincerely hope you find more of that fighting spirit.

Nil desperandum
Allister

User

Posted 22 Jun 2014 at 22:26

Shame I'm down in Bristol, clearly missed out on a great time. Wishing you many more good times TG !

Fiona.

User

Posted 22 Jun 2014 at 22:46

I can honestly say that it was the BEST Leicester bash that we have attended.

Barry, it was TRULY great to see you there, we were praying that you would be well enough to come, our prayers were answered, now enjoy your ANNIVERSARY on Tuesday and you can now LOOK FORWARD to Euston in December !!!

Have a GREAT DAY on the Thames, post some pics.

Your Pals,
Chris and Shirley. xxxx

User

Posted 23 Jun 2014 at 00:09

Hi Barry,

So glad you were able to attend the Leicester meet - great determination on your part in your situation. What a great day it was. Glad to know you are very pleased with your hospice in all respects and that Karen's employer has been considerate so that she has been able to visit you so frequently.

Barry

User

Posted 23 Jun 2014 at 13:05

Barry,

Whatever praise and admiration rained down on you was fully deserved.

Never for one moment did I doubt that you'd get to The Mill.

Don't be embarrassed, You can't help it if you're an OUTSTANDING BLOKE can you?

We all all so proud of you mate,

Now get yourself some rest so that you and Karen can fully enjoy your upcoming Silver Wedding Anniversary.

Love from the Jarrow lot,

George, Lynn & Katrina
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B2PCa

User

Posted 26 Jun 2014 at 23:22

Hi all,
With a busy weekend behind us and another one ahead with Karen's family coming down for a grand Sunday lunch at a village pub it is time to set new targets. So with that in mind we are going to Dublin on the 14th July, staying with our good friend Elise (Fleecy) for two nights and then 3 nights at the Arlington Hotel which was recommended to us. Then aiming a bit further down the line and in order to get back some of the deposit from the October cruise to the USA which I have had to cancel (no insurance) we have just booked a two night cruise on the Adventure of the Seas at the end of August ......so as always,
Life is for living
Barry (alias Barrington )

Edited by member 27 Jun 2014 at 06:07 | Reason: Not specified

User

Posted 27 Jun 2014 at 11:10

Fantastic to see you are planning so much activity, targets and goals are excellent motivators but be preared to have to bypass or postpone the occasional one. Let your body tell you what you can manage and your mind assure you of what you can achieve. Knowing you and Karen and the support of your friends and family i suspect that will be prety much everything you set out to do.
You should make a jiurnal of the 100 day campaign with loads of photos and then when you have about 5 of these 100 day campaigns publish it as a series to show the world what a true hero you are.
Xxx
Mo

User

Posted 27 Jun 2014 at 12:32

Diamond Geezer http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Spend your time wisely in the Royal Caribbean Diamond Lounge with all that free drink http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum
Allister

User

Posted 28 Jun 2014 at 12:03

Diamond Geezer?

You bet he is, Allister.

Barry, I've had to copy and paste your post into a memo file just to keep track of where in the world you're going next!

'They seek him here...they seek him there'...God bless The Kinks and their music. : )

Is Ted accompanying you and Karen as usual? Will he be safe in southern Ireland?

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B2PCa

User

Posted 29 Jun 2014 at 11:14

Hi

It was good meeting you all next week, even if only briefly. Sorry I disappointed a few by bringing the Jag but Porsche doesn't really fit 3 people and I wasn't got to let TG drive it

No 1 son.

User

Posted 29 Jun 2014 at 15:52

'Hi ,

It was good meeting you all next week, even if only briefly.'

Wow ! That Jag is a bit quick No.1 if it was good meeting next week http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Kind regards

Ray

Edited by member 29 Jun 2014 at 15:54 | Reason: Not specified

User

Posted 29 Jun 2014 at 18:08

That is what being a high flyer gets you time travel.....nice one James

User

Posted 29 Jun 2014 at 18:13

Hi all,
This is Karen and I am just writing a short note for Barry as, unfortunately he is in a lot of pain. We have had the most amazing time celebrating our 25th wedding anniversary over the past 2 weeks, as Barry has told you, including seeing many of you at Leicester. This is now telling on him and he feels unable to post tonight, he is very tired, in pain and feels that things are changing within his body now. The chest nodules have grown a lot causing wheezing and sleep apnoea. He is hoping to be feeling a bit better tomorrow but tonight he is in a bad way. We wanted everyone to know as he has shared his journey, warts and all, so far and, now, despite it being very upsetting for him, he is sharing just the same. As Barry would sign off, life is for living and he is happy that he has lived his to the Max. Love from us both Barry and Karen xxx

User

Posted 29 Jun 2014 at 18:34

Thinking of you both, Karen, the pain must be bad given he cannot post! Thanks for letting the forum know we hope rest and his indomitable spirit will give him some respite!

User

Posted 29 Jun 2014 at 19:14

Thinking of you both at this time I know how hard it can be after watching my dad go through his pain and sickness

Frank

User

Posted 29 Jun 2014 at 20:00

Dear Karen
Please tell him how much we love him.

With huge love
Allison xxxx

User

Posted 29 Jun 2014 at 20:06

Karen, you and TG have certainly extracted every bit of living life has to offer !! Love to you both! Fiona.

User

Posted 29 Jun 2014 at 20:17

Best Wishes Barry and Karen. Thinking of you both. Sandra

We can't control the winds - but we can adjust our sails

User

Posted 29 Jun 2014 at 21:07

H Karen, I hope this is just a temporary blip,

Best wishs to you and Barry

Barry

User

Posted 29 Jun 2014 at 23:10

Hi Karen,

I have read and followed all of Barry's posts, but this is the first time that I have replied. I am so sad to see that you are having to reply on his behalf, I only hope that he is feeling much better tomorrow. He is such a great inspiration.

Stu

User

Posted 29 Jun 2014 at 23:51

Thank you fior telling us, Karen, but sorry to hear. I hope Barry can get some sleep and a little relief from the pain, thinking of you both, love Janet, xx

User

Posted 30 Jun 2014 at 00:11

Hi Karen,

Very sorry pain and tiredness is taking it's toll. Barry has been fantastic and I am sure will post again when he feels he is up to it but must not over extend himself. We will all be thinking of him and our best wishes go to him and you Karen.

Barry

User

Posted 30 Jun 2014 at 07:49

Hi both, I really hope the pain and discomfort has subsided since yesterday.
You are both such an inspiration to us all

Bri x

User

Posted 30 Jun 2014 at 08:43

Karen thanks for posting on Barry's behalf, it is extremely hard to see someone you love with all your heart in pain and battle weary. Dont forget the hospice team can help if the pain meds need reviewing. In the meantime both get as much rest as you can whenever you can. The last 10 days or so will have been a Herculean effort that will take eequally as long to get over. Thinking of you every day xxx
Mandy

User

Posted 30 Jun 2014 at 10:08

Thinking of you both. I hope he is feeling better today and had a good sleep.

Paul

Stay Calm And Carry On.

User

Posted 30 Jun 2014 at 10:42

Dear Karen,

I hope Barry had a good night and is feeling a bit better today.

You are both in our thoughts, hearts and prayers..

We love you both ,

George, Lynn and Katrina
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B2PCa

User

Posted 30 Jun 2014 at 12:05

Karen Thank you for letting us all know. I am hoping that Barry has had a better night and the pain can be brought back under control.

Just from all of the messages I hope you can see how much we all love you guys.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2014 at 12:20

Hi Karen

Thank you for posting for Barry ... and yourself. It must be extremely difficult for Barry not to post. I hope he is feeling more comfortable this morning and that his pain control is working.

It was good to see you both at Leicester and I am sure many of us were amazed how much Barry and yourself have done over the past few weeks and more.

Our thoughts are with you all at this time. Very best wishes.

Alan and Celia

User

Posted 30 Jun 2014 at 13:27

Hello fellow punters,
Thank you all for your kind thoughts following Karen's posting. Firstly I am feeling much better in myself. Secondly without beating about the bush Friday through to this morning was not a good place to be in and I admit to asking Karen to stay close to me in bed as I honestly thought I might not make it through the last 3 nights. I felt totally washed out, in a lot of pain and, because I was taking more Oramorph to combat the pain, spaced out. After a hectic week going up to my sons, going to the Leicester gig, seeing all of my family on the Sunday followed by going to the Runneymede Hotel to celebrate our Wedding Anniversary, going to my Brother in laws last Saturday where all of Karen's family gathered for an afternoon tea and then me treating them all to a Sunday lunch yesterday in a lovely country pub. All very very good but at the end of the day knackering even if I was fit. So I guess it's no wonder that my body told me enough is enough and decided to close down if only for a warning.
I slept like a baby last night and well into this morning, I have no plans for the next few days other than rest and literally do nothing. Our flight tickets have been booked for a 5 night break in Dublin for the 14th of this month and I have every intention of being on it and having a pint of the real stuff.
Thank you all once again, your support means a lot not only to myself but to Karen as well, I am happy to know that she felt it right to let you all know how I was.
Life is for living
Barry ( alias Barrington )

User

Posted 30 Jun 2014 at 13:38

Barry,

You'd never believe how relieved we all are to read your post.

YES.....you got it spot on. You packed so much into just one week that your body was shouting 'TAKE A BREAK FFS! I'M KNACKERED!!'http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Always listen to what your body tells you.

I always do, but then again...I'm a lazy so and so!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Great to have you back online.

George

B2PCa

User

Posted 30 Jun 2014 at 13:54

A huge sigh of relief to see you back posting Barry, I think as you say you have been over doing it lately . So R&R for the next few days. You make me dizzy just reading where you are and what you are up to .

Love as always to you and Karen

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2014 at 14:38

Barry,
You nearly gave US ALL heart failure! Pleased to see you posting again, thank Karen for keeping us up-dated, take care, my friend, and enjoy Eire.

God Bless.

Chris

User

Posted 30 Jun 2014 at 14:55

Barry,

Great to see you posting again.

You take care mate, see you soon.

Love to Karen as always.

Mike & Kath xx

User

Posted 30 Jun 2014 at 15:07

Have been thinking about you on and off all day, TG. Good to see your post !

Fiona. X

User

Posted 30 Jun 2014 at 16:19

This post Almost had me doing a somersault.

I don't think my back would have coped. So glad you are feeling a little better my friend.

Keep resting and recovering ready for your trip to the emerald Isle.

Love Allison xxxx

User

Posted 30 Jun 2014 at 16:39

Barry you need to alter your signature to "Life is for living in the slow lane now"

Glad to hear you have perked up.

User

Posted 30 Jun 2014 at 18:01

Excellent news. Rest well before Dubin!

Stay Calm And Carry On.

User

Posted 30 Jun 2014 at 21:11

PHEW,

Glad your felling a lot better

Best wishs

Barry

User

Posted 30 Jun 2014 at 22:01

Good on ya TG. You had folks worried there for a bit. We should have known better. Keep setting those goals

Bri

User

Posted 30 Jun 2014 at 22:12

I know its just a ploy to fill more pages than the Newark Mob! You know the score, its so easy to do too much, just another lunch, just another..... But care for yourself and give yourself the respite then you can continue to enjoy yourself for a good while. I was in Dublin recently for the first time and really enjoyed it. I know you will have a great time.

User

Posted 30 Jun 2014 at 23:17

TG , you never cease to amaze me, and long may you continue to do so.

Roy

User

Posted 01 Jul 2014 at 12:53

Well Barry

All I can say is thank goodness VJ and I are not so good at accessing the new forum and therefore not so proficient.

We just read through your latest postings and, as others have said, nearly had heart failure and felt very down by Karen's post.

Really glad to read you are feeling better and that you are going to take it a tad easier.

Wishing you all the very best from both of us.

Kim

User

Posted 01 Jul 2014 at 22:41

TG that hammock looks very cosy spend lots of time in it being suspended in space is supposed to be extremely good for you! Xxx Mo
Ps you can let karen have a go too

User

Posted 02 Jul 2014 at 17:47

Hi all,
After a dreadful weekend when I felt absolutely down and out and as near as damn it on deaths door I feel a little better as the days have passed, resting as much as possible. My consultant told me to have some more blood tests to see whether it is worthwhile to continue to take Enzalutamide. They came back today with mixed results, one lot of liver enzymes went up yet another lot have gone down. Assuming that he called it a draw my Onco has prescribed another months worth (GP can not prescribe these magic pills at this moment in time). By the way my PSA is now 0.06 how weird is that.
I saw my GP today as my feet have swollen and I am now on water tablets, I was with Karen and my GP turned the conversation round to the "end game" asking where I wanted to be at the end. We had quite an interesting chat about how I was going to go, as to when to make these final decisions. My preference would be to go back to the Hospice in my final days but to die at home. Sounds morbid I know but we all know that it won't be far off now and I respect my GP for taking the time to go over these things in a kindly fashion without being condescending. I told him that I was setting targets, the next being our jaunt to Dublin, he was in agreement with both setting targets and Dublin, but did tell me to rest up in the meantime. He was in fact quite amazed that I had done so much since leaving the Hospice.
I'm on a mix of 13 tablets at night now which certainly gives a good nights sleep but in the minutes to nodding off I'm in a world of my own, having allucinations and reaching out for things that aren't there, then I come back into the real world before zap it's time to get up.....with only 10 tablets to take with my morning cereal.
At least the weather has been kind and I'm spending a lot of time on my hammock. I normally would be chilling out with a beer watching sport on the TV but after the debackle that was the England Football team, the farce over Pietersen and the England Cricket selectors who haven't got the ba**s to get rid of Cook as Captain we now have Murray crumbling at Tennis I am now down to watching Last of the Summer Wine.
No matter, Dublin in a few days time because........
Life is for living
Barry (alias Barrington )

User

Posted 02 Jul 2014 at 18:17

I am not surprised your GP was amazed at what you have done Barry, since leaving the hospice. Not long until Dublin now, keep resting. Love to you and Karen, Janet

User

Posted 02 Jul 2014 at 18:49

Barry? You've been watching Last Of The Summer Wine?

OMG. Does this mean you'll be wearing the full 'Compo' garb next time we see you?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Please don't make him your new hero.

Keep out of mischief, you hear? : )

George, Lynn & Katrina.

Edited by member 02 Jul 2014 at 18:50 | Reason: Not specified

B2PCa

User

Posted 02 Jul 2014 at 20:20

Barry, another great post. I am so pleased your GP took that initiative. It is so important to take every opportunity to plan the end-game. It is the one 'gift' of this dreadful disease that it is possible, if we take it, to think about what might happen and what we want to happen. Having that degree of control is so important for you and for those around you. I saw my dear friend, who died of bowel cancer not realise until too late and I think he regretted not being able to do things he had intended for hi children. It sharpened my mind at the time and remains with me for future reference. Now is not a time to pretend things are not progressing! Having sorted out the pathway you can then focus on your goal of 'life is for living' without worrying about what will happen!

User

Posted 02 Jul 2014 at 21:01

Well what can I say Hammocks and Last of The Summer Wine now your talking, that is my kind of afternoon. Keep those feet up and energise yourself for Dublin. If you find a Leprechaun when you are there can you bring it back for me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jul 2014 at 21:55

Brave GP. Haven't we discussed on here time and time again what a difference it makes when you have a medical team in whom you can put all your faith and trust.

I feel a bit anxious though. I have been away from home so much over the last few weeks and just snatching a bit of the forum when and where I can. Now we are whizzing to France until the 22nd July and Lord only knows what you will get up to while I am not here to tell you off. You and that bear are so badly behaved!

Hold me in your heart as I hold you and Karen so dear to me. Know that even if I am not posting, I am thinking about you and hoping you get lots of rest and KEEP WELL! If you do anything naughty or devilish, like being too blunt to forum members, ignoring advice or not doing what Karen tells you, you will be able to hear my voice tearing a strip off you. You are my Top Gun and I love you so much xxx

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

User

Posted 02 Jul 2014 at 22:30

Hello Topgun

Do you remember me maybe some of the others might ,I have been coming onto this great. website for 11 years,I'm still going striong had all the treatment HT RT HT for a long time now,PSA going up.
Have been reading your posts and what you have been getting up to !
Take care just wanted to be in touch again. We have posted a long time ago.
Take care.

Brian 2

Edited by member 02 Jul 2014 at 22:31 | Reason: Not specified

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