15 years on (continued)

User

Posted 14 Jul 2014 at 14:41

Thanks all, I know Karen is with him today and will update accordingly.

He does have his iPad, but not sure if he has been on the site recently, I know Karen does occasionally

James

Edited by member 14 Jul 2014 at 18:50 | Reason: Not specified

User

Posted 14 Jul 2014 at 15:06

James Thank you for keeping us all updated it is very much appreciated especially as you are going through such tough times your self . Mo has already sent hugs so I will have two's up on Mo's hugs.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Jul 2014 at 19:12

Dear All

Thank you for all your hugs and kind words, this is Karen writing as Barry is very emotional and, as he says 'humbled by your comments'. He has been able to sit up for a while this afternoon and we have started a jigsaw puzzle. He has had some visitors and has had quite a lot of pain today with the infection still raging. Tomorrow he will have bloods taken again the results should go to the Onco but they are looking at the blood clotting - at the moment it is not! Barry has had lots of friends and family visiting lately - our kids- James and Jo, Chris and Laura; the ex Gurkhas and our friend from the Tower of London(all travelling a long way to see him) and I also spend every day here, coming and going with the dog who is also made very welcome. He has asked me to send love to you all and is thinking of others who are on this same journey x

User

Posted 14 Jul 2014 at 21:01

I'm useless with words but my thoughts and hopes are with you both,thank you for the update.

User

Posted 14 Jul 2014 at 21:16

Many thanks for the update Karen. Pass on my best wishes to Barry. Also thinking of you

Bri

User

Posted 14 Jul 2014 at 21:23

Thinking of you.x

Max

"You can only play the hand you're dealt"

User

Posted 14 Jul 2014 at 21:33

Hello Barry Karen,

Good to read your updates did you finish your jigsaw. I hope that your pain is under control now. Karen don't let Barry have to many opiants last time Eric was in hospital in coma he was so out of it when he came round he thought I was his first wife OUCH.

Eric and I both send our best wishes to you both.Hear from you soon.

Carol Eric

User

Posted 14 Jul 2014 at 21:45

Thinking of you TG. Hope that pain is well under control!

Stay Calm And Carry On.

User

Posted 14 Jul 2014 at 22:23

Hi Karen and Barry, there is little today which I can add to what others have already said. I am thinking of you both and hope that in between the pain and fever there is time for you to just be together and make the most of this precious time. Thanks to James too for updating, Barry needs to be focused on dealing with the latest issues and not worry about us.

User

Posted 15 Jul 2014 at 07:27

We are all here Barry, Karen and family. All sending positive thoughts your way. Hope they get the pain sorted for you.

Since I've been a member of this site, I have been constantly amazed at the strength of the members here as they deal with the most horrendous problems this disease can bring, but especially you Barry.
To keep your humour, to keep giving helpful advice to those needing a boost, to keep thinking of us via your family while you ill , well - you keep on doing it.
Even now, your being so poorly at the moment, is bringing this "family" even more together a we all send our

Best Wishes

Sandra

Edited by member 15 Jul 2014 at 07:27 | Reason: Not specified

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

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.

User

Posted 24 Jul 2014 at 17:02

Hi TG

It's nice to see you posting and as always you are thinking of others, did you know they are trials being carried out on bone mets to the lower spine using HiIFU..

All the best

Roy

User

Posted 24 Jul 2014 at 23:16

Speaking from my own previous encounters, not many I'm pleased to say, I can understand the value of a good backing group be it family friends or any combination of either. TG and Karen have it in abundance that is clear to us all and rather reassuring I feel. Good night dear friends immerse yourselves in it.

User

Posted 26 Jul 2014 at 09:55

Hi all,

A little bit more from the front.

News is a bit mixed, on the pain side I went 4 days relatively pain free only to be in a lot of pain 2 days ago around the rib area. Oramorph has reduced the pain and yesterday went fairly well but very very tired. I have an infection on both legs with about 15 "eruptions" on both legs. Thankfully although a bit tender they have not broken open....yet! They were treating this with Fucibet cream and an intravenous antibiotic. They have stopped this from last night as they think it might be effecting my liver adversely. This is the main problem with my latest liver bloods going haywire. My GGT should be 60 and my ALP should be 30-130, both are over 1400. Who gives a toss about PSA !!

I see my oncologist on Wednesday following a blood test on Monday when we will discuss the effects the relatively new drug Enzalutamide is having. I will have been on these " bombs " for 7 weeks. My concern is that it isn't working and at £3000 plus per month he might feel that it should come to an end, we shall see.

Onto the main issue, my spirit is high, I feel generally well apart from the tiredness and the fight continues. We are having the downstairs loo converted to a damp room. Unfortunately despite 31 years Army servce I don't qualify for a grant for this from SSAFA, British Legion etc. as it is means tested and Karen is still working and I get a good pension. Hospital bed, wheelchair etc. etc. will be provided by the hospice though. So I am looking at getting home towards the end of next week, beginning of week after that.

On that upbeat note I will sign off,

Wishing you all the very best,

Life is for living

Barry ( alias Barrington )

Edited by member 26 Jul 2014 at 10:00 | Reason: Not specified

User

Posted 26 Jul 2014 at 10:20

So glad to hear you will be going home soon. Like others on the site we are following your brave journey and thinking of you and your family.

Max

"You can only play the hand you're dealt"

User

Posted 26 Jul 2014 at 13:24

Thanks for the up-date Barry, nice to see that you will soon be going home again, I see that SSAFA and RBL won't fund your wet-room, have you tried the Social ?

Best wishes, Chris.

Shirley's post :- Hi Barry, How are you dealing with this hot weather? We feel absolutely whacked after just a short excursion up to Sainsbury's! (five minutes' walk normally, about ten or more just lately!!) Hope Karen is coping with all the upheaval, and let's hope the wet room works for you. We hope the move next week goes well, it is something to look forward to.

Love and best wishes, dear friend,

God Bless,, Shirley xxxxxxxxxxxxx

User

Posted 26 Jul 2014 at 16:00

Hi Barry

Pleased to see you posting and the news you will be going home shortly. Hope things pan out better at your oncologist visit than you anticipate.

Shame you can't get any funding for your wet room, but it will be worth the cost in the long run. I had one built a couple of years ago now as I find stairs a problem. It has paid many a dividend for me, so hope you find the same.

Hope they can get the levels of pain vs meds sorted a little better still for you, as high levels of pain meds will leave you feeling tired and wiped out.

Wishing you and family the very best.

VJ sends you and Karen her love and best wishes too.

Kim

User

Posted 26 Jul 2014 at 19:49

Good news on your plans to get home, Barry, thinking of you both, love Janet

User

Posted 26 Jul 2014 at 20:05

Hello all,

This is Karen again, since Barry's upbeat post this morning things have gone downhill rather fast. He became very depressed this afternoon and because of the rising liver bloods feels that he will never get home. He is not able to put a brave face on things which as you will know is not like him. We sat in the garden an hour or so ago and had a good cuddle and cry. I know that he is thinking more of me rather than himself and I wish he wouldn't. I think for both of us it is the not knowing how long this will go on or how it will end and where we don't usually dwell on this, tonight we did! Hopefully tomorrow we may both be feeling a bit more upbeat but if there is no post for a day or two, you will all know why. Night night all love from Karen and Barry xxx

User

Posted 26 Jul 2014 at 20:39

Thanks Karen. You are both in my thoughts. Hopefully Barry will be feeling better about things tomorrow. Perhaps allowing himself an outlet (crying) will help him.

As ever we are all with you

Take care

Bri x

User

Posted 26 Jul 2014 at 21:00

Thinking of you TG and Karen. Best Wishes each, Diesel. x

User

Posted 26 Jul 2014 at 21:09

Hi Karen,

Reading between the lines from Barry's post this morning I felt kinda sad, so no wonder that you have both had tears this afternoon. Well that now makes 3 of us I had quite a few tears reading your post.

I am really hoping that you can manage to get Barry back home where he wants to be.

Much love to you both.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Jul 2014 at 21:09

Thankyou Karen

This is the first day I have looked in was wondering how Barry was .

I started to reply sending my best wishes to you both then I deleted it.

Now am reading how emotional he is that is what happens they dont feel sorry for themselves all they care about is thier OH and that is why we love them so much.

Right now my heart is broken but have room to send you both my love and best wishes keep strong and hold each other so tight.

Carol x

User

Posted 26 Jul 2014 at 22:34

Karen

I understand where Barry is coming from. Many people see me as this "rock", this "never say die" figure but I also cry and I sometimes find it all too much to bear. I hate this disease SO MUCH and what it does to us but we can only trust in God and the medics http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif.

Find peace in whatever way you can ....

Allister

Nil desperandum

Allister

User

Posted 26 Jul 2014 at 23:11

Hello Karen,

With all that Barry has had to cope with it would be surprising if he was able to keep his spirits up all the time. It's good that you are able to help him and ensure he does not overtax himself. We are all thinking about him, hoping that his pain can be alleviated and problems addressed so he can come home soon.

Very best wishes to you both.

Barry

User

Posted 26 Jul 2014 at 23:37

Dear Karen and Barry, you both so obviously think of each other's needs rather than your own, and it gets so difficult to put a brave face on, in Barry's case through the pain and tiredness and in your own, your worry. I wish I could help, as we all do, maybe Barry will feel a little brighter in the morning, love to you both, Janet, x

User

Posted 26 Jul 2014 at 23:59

Your love for each other shines through your threads. A good cry will help you both at this difficult time. Thinking of you both.

Paul

Stay Calm And Carry On.

User

Posted 27 Jul 2014 at 09:35

Dear Karen and Barry,

You know each other so well after all these years. You are soulmates and you each know what the other is thinking.

I'm glad you got to have your good talk to air your feelings and to try and release some of this enormous pressure and anxiety you're both under.

Barry, you are absolutely worried sick about Karen and she feels the terrible deep worry for you.

You've just celebrated 25 wonderful years, and I know your love is stronger than ever.

Let this beautiful. strong bond you share give each of you double the strength to cope with the painful emotional days.

Wiling you both peace and comfort,

Love from us all here,

George, Lynn and Katrina

B2PCa

User

Posted 27 Jul 2014 at 10:22

Barry, Karen, I hope things are better today.

flexi

User

Posted 27 Jul 2014 at 17:54

Know where you are coming from... love to you both.

Fiona.

User

Posted 27 Jul 2014 at 19:29

Hi Karen

We are so very sorry to hear the news about Barry. I hope over the last 24 hours both you and Barry have become a little more comfortable. Very best wishes to you and Barry and your family. Thinking of you all.

Alan and Celia

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