15 years on (continued)

User

Posted 15 Jul 2014 at 11:48

Hi again Barry,

Just been catching up on your tortuous journey, and now feeling so very guilty at having mainly ducked out of forum stuff for many months - busy working away, and generally putting PCa stuff on one side. We've had some great conversations in recent years and your common-sense inputs to every debate have always been a breath of fresh air....as with the harsh realities you now face... and your fighting spirit comes across as always, and your service background has always meant that this was no metaphor.

My own pathetic story continues with saturation biopsy no.4 imminent and still dodging treatment as ever, but I try not to be in any way disrespectful of all those for whom the choices are really no-choice..... just hoping you get the very best of everything available, and remain relatively comfortable throughout. I have never met you and possibly never will, but the inspiration has always been very real and humbling, and never more so than now...

Cheers - as always - David

'It couldn't possibly happen to me....'

User

Posted 15 Jul 2014 at 23:40

Bary and Karen

I am in awe at the fortitude of you both and your brave family. Could I just share all the best wishes and bountious compliments that have been, and will understandably continue to be, poured upon you for comfort and encouragement at this trying time?

John B.

User

Posted 16 Jul 2014 at 10:11

Hi Barry and Karen

Just to let you know i check in on you both every day, off to have coffee with a friend having palliative chemo today for Leukemia.

Hope the pain is gone and you are enjoying snuggles and each others company as well as all your visitors.( dog and Tommy bear included)

Much love

Mandy Mo

Xxxxx(OOOO) (OOOO) that is an extra wide hug each

Edited by member 16 Jul 2014 at 10:12 | Reason: Not specified

User

Posted 16 Jul 2014 at 11:27

Hi all,

A few words from the sharp end. Firstly thank you all for your kind words, I won't pretend that these past few weeks have been easy but I can say that being in a hospice such as mine makes things so much easier. The struggle to control the pain goes on and I am currently taking 14 tablets at night including 4 Enzalutamide which are huge. They of course are for the cancer, not pain killers and I had my bloods taken yesterday which might throw some light on the tumour side of things. Looking back and a few words of encouragement for those recently diagnosed, I was diagnosed over 15 years ago and had RT 15 years ago this month.

The idea being to get through 5 years, OK not so good now but I had 14 good years before this insidious disease caught up with me, and it is vital to know that today's treatment whether it be RT or something else is so much better and more refined than it was all those years ago.

If sometimes Karen or my No 1 son James posts for me don't be too concerned, I'm not always full of beans and after watching both Andy Murray and the England football team crumbling to an embarrassing performance why should I be.

Best wishes to you all, never give up because

Life is for living

Barry (alias Barrington )

PS Since coming in last Monday week I have had 17 visitors, surely they can't all be after my money!

User

Posted 16 Jul 2014 at 11:29

Dearest Barry and Karen

I looked in today to see how things are and wanted to send our love to you both.

Love and hugs

Allison and John xxxxx

User

Posted 16 Jul 2014 at 11:47

Hi Barry, GREAT to see this post this morning.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I agree...you can't be full of beans all the time, and frankly, it's better that you're not.

We all remember what you're like after a night eating a 5-bean & chilli meal.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

As for the World Cup? Well, I hope you enjoyed those funnies I sent on to you.

We know that Karen or James will keep us all updated when you're having a rest from it all, and really appreciate their posts too.

If you have a down day and want a smile, take a look at all those photos in the B2Pca functions albums.

By the way, you out-did yourself this year with those 'Barry's Babes' ones.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Take it easy, we hope the doctors can keep your pain at bay.

Love from all in Jarrow to Karen and yourself

George, Lynn & Kat

B2PCa

User

Posted 16 Jul 2014 at 18:49

Good to hear from you old lad. Yep pity about the England teams diabolical performance but didn't have any sympathy for Murrey. (Can't be doing with him)

Thank you for sharing the positive side of your journey for any newbies. I know people will appreciate that. I know you give me lots of hope and a recognition that we do need to live our lives.

Keep at it Barry. Thinking of you Karen and your family

Bri

User

Posted 16 Jul 2014 at 20:13

Hi Barry,

As much as we all love to hear from you, please don't feel you have too post. I did see that you had posted to a newbie yesterday, (not that I am checking on you in any way) well OK just a little bit.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. OH all right quite a lot.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif.

I am sad that the footie has finished and even sadder that we lost.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif haven't a clue who Murray whats his name is so back to some serious TV watching, 1hr of Communicating with Animals and then another hour of One Born Every Minute. Deep Joy. My kind of night.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Lots of love as always to you and Karen.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jul 2014 at 22:39

Good to see you posting, Barry,, and as ever you are considering others. Do think of yourself though and if you need a rest we are happy for Karen or Janes to keep us updated. Lots of love to you and Karen, xxx

User

Posted 17 Jul 2014 at 00:32

Keep going Barry. Wait till England and Anderson finish off India, and there's bound to be lots of English medals at the Commonwealth Games.

And you can look forward to Louis van G turning things round for Utd at Old Trafford. Lots to stay positive for!

Stay Calm And Carry On.

User

Posted 21 Jul 2014 at 11:00

Now look here TG,I know you're not well and feel a bit down, and in some pain and discomfort,so here's a little tale to maybe make you smile. Turning to the prisoner in the dock,the judge asked him "Do you have anything to say in your defence, before I pass sentence on you" The man replied "Fcuk all your honour"The judge turned to his defence counsel and asked him, "What was that he said" Counsel replied 'Fcuk all your honour" the judge faced the court and was heard to mutter,"Very strange, I could have sworn he said something." Well it made me laugh,wouldn't be surprised if Lynn gives me a telling off,but, am I bothered, well,just a bit. My best wishes to you and your family TG. Diesel x

User

Posted 23 Jul 2014 at 17:08

Hi.

Went and saw TG on Monday and I worked from the hospice. He was in good spirits generally which was good to see. However his legs are causing him a lot of pain and has to use a wheelchair as he can't put any weight on his legs. But generally he was a lot sharper than the last few visits.

Sadly the guy opposite him passed away this am.

He and Karen are looking at options about getting him home.

Will update again shortly.

User

Posted 23 Jul 2014 at 17:43

Thank you for the update, James, hope all goes well with getting Barry home, love to all, Janet

User

Posted 23 Jul 2014 at 18:24

James thanks for the update, really pleased to hear that you are working on a plan to get Barry home soon if it is possible. Does the Hospice provide a hospice at home service? That is what we switched to for Mick along with some home care and district nurse visits so that he could come home. It is really difficult when others pass away in Hospital or the Hospice for everyone, the family and friends of the patient and other patients too but also for the staff. In the Hospice at Lincoln they had little candle ornaments that they used to light and put on the nurses station for a few days for every patient that passed away as a sign of respect and so that visitors and carers/volunteers all knew.

You are an amazing son I know how important it is to have the supposrt of someone as good as you.

User

Posted 23 Jul 2014 at 18:26

Thanks James,

I hope your dad is home soon and preferably with that leg trouble sorted.

Good to see he's so much sharper recently too.

Fingers crossed Karen has him back soon.

George

B2PCa

User

Posted 23 Jul 2014 at 19:39

Thanks for the update James,

It would be most excellent if TG could go home again, it would be good for him and for Karen. Fingers crossed they find a way.

Sending love to our dear friend.

Love Allison x

User

Posted 23 Jul 2014 at 20:24

James Thank you for the update, although the Hospice sounds great as Dorothy would have said "There's no place like Home".

Give your Dad and Karen my love .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Jul 2014 at 14:51

Hi all (and No 1 son )

It is too late for me but on the good news front Dorset County Hospital based in Dorchester will be carrying out HIFU from now on. This will be for patients with relatively low grade PCa and for those whose RT has failed. They are saying that whilst not quite having the success rate of an RP it is of course less invasive ( only a day in hospital ) with hopefully far less side effects.

Yet another big step for PCa patients in this neck of the woods when only last week one would have paid up to £12,000 . I might be on the losing side but in reality we are winning the war,

Life is for living

Barry ( alias Barrington )

User

Posted 24 Jul 2014 at 14:56

That is great news Barry, how are things with you ?

Don't deny the diagnosis; try to defy the verdict

User

Posted 24 Jul 2014 at 16:09

Brilliant. I remember hassling one of our urologists for HIFU last year, Neil's diagnosis ruled it out of course, but I'm still here hassling for other treatments ! Love to you and family, TG,

Fiona.

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