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15 years on (continued)

User
Posted 15 May 2014 at 10:03

This conversation is a continuation of the archived thread '15 years on', which you can find here: [First page] [Last page]

 

 

Edited by moderator 15 May 2014 at 10:35  | Reason: Not specified

User
Posted 17 Aug 2014 at 17:03
Hi all, Karen has asked me to just let you all know that they are tootling along. TG has very little appetite now but is using all his persuasive skills to get away with eating puddings and iced drinks, his pain is fairly well-managed and he has been up to having the occasional visitor. Some friends of theirs have created a phenomenal piece of art and donated it to the hospice to be auctioned off .... it seems that even now, our Barrington (with help from the people that love him) is able to make a difference for others who will come after him.

Karen will let us know if there is any change and she and TG know that we are all thinking of them.

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

User
Posted 21 Aug 2014 at 20:51
Written by James (number 1 son). Dad left me this note to type on his behalf. George can you post a copy of this on the other website?

Hi all

When you read this I will no longer be on this wonderful land of ours. Do not mourn me, miss me perhaps, but do not mourn. I have lived a fantastic life well beyond anything I could have dreamed of. Seen the world, have had the best friends including so many on this site. Most of all though had such a loving family with Karen being the love of my life closely followed by James, Jacqui, Chris, Lisa, Laura, Jo, Dave, Irene, Graeme,Lisa and my faithful Poppy.

However the aim of this note is to give newcomers to PCa hope and inspiration. I was diagnosed over 15 years and had RT 15 years ago in July 1989. Follow up treatment HT etc was never offered all those years ago and of course RT wasn't so well defined.

For 14 years I lived a full and active life, playing volley ball, cricket etc. I repeat 14 years I lived life to the very full.

It wasn't until April 2013 that I had some pain but even that didn't hold me back too much.

From Feb 2014 I have had problems and I won't pretend that life since then has been easy. I have however had the best care in my superb local hospice with the support from my dearest Karen.

My final message is:- I lived a full enjoyable life for 14 years since being diagnosed. I never looked back and said "what if" since being diagnosed as terminal on 2nd March and given a very short life span, I fought as much as I could and 5 1/2 months is a longer time than any of us could have expected.

So yes there is hope, be positive, there is so much medication / treatment in the not too distant future.

Most of all

Life is for living - make the most of it

God bless you all

Barry (alias Barrington) retired!

User
Posted 19 Aug 2014 at 20:08
Dear All,

Karen has asked me to post the latest on Barry:

Barry has been sleeping for the last 2 days. They put a syringe driver up today.

We managed to get him home on Sunday for about 40 minutes.

He was a bit spaced out but saw the wet room, sat in his chair and fiddled with the TV (and told me off as there is no sky sports now!), told my dad we need a Ramp at the back and a handrail out the front of the house then had an ice cream.

It was enough to settle his mind and he has been sleeping fairly peacefully since then.

I can't wish for more than that George. If he is peaceful and not in pain then I am content with that. I know now it is just a matter of time and I will be in touch again soon. Please will you pass this news on for me on both sites.

Thanks everyone,

Karen

xxxxx

User
Posted 11 Aug 2014 at 15:46
Hi guys

This is James typing this post, because if I did it would take me ages as I get confused with this keypad.

Hard decisions have been made and all my family have visited in the last 24 hours, and understand that I will no longer be taking curative medication as my liver bloods continue to rise, and basically they are not working and total liver failure is immanent.........60 to 1550. I am at times loosing lucidity and going into strange worlds. I will still be taking palliative medication for any pain I get. I will be staying in the hospice as literally I can't get out of bed on my own and need two people at all times. Even were I to get home Karen would need another person there all the time to help with even the simplest of tasks.

As I have previously said, I have enjoyed life to the full and now is the time to let go. Thank you for all your support. I am aware things won't happen over night but this will be my last posting, so there is no need to reply.

For those still fighting your own battles I wish you all the best. God bless you all and truly remember ……

That life is for living Barry (alias Barrington).

Ps any mistakes were made by James!!

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 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 21 Aug 2014 at 00:59
All

Thank you all for your kind words, it truly means a lot to me and Karen. The family opened a couple of bottles of champagne to celebrate his life.

I'm devastated I've lost my father, hero and more importantly who the hell am I going to moan about the England cricket team with going forward, ok so we beat India but as Geoffrey Boycott said our mums could beat them using a stick of rhubarb as a bat. (Cricket fans will get that)

I would "thumbs up" all the postings but takes too long. So please treat this as a "thumbs up", I have read all posts I promise.

I may of met some of you only briefly in Leicester and some only via postings on dads thread but I know you all meant a great deal to him. I'm not aware of the 2nd group / website so if you can send me a link I would be grateful.

I will update you with funeral details as and when.

The picture, linked on a tread above, summed him up. He made my kids walk Poppy with him dressed like that and they loved it. They will miss him badly.

Wishing everyone best wishes.

No one son. James

Life is for living someone once told me, so go and live!

User
Posted 09 Aug 2014 at 01:34
After terrible storms here in Leeds earlier this evening, it is now a very beautiful peaceful night. It reminded me of our old friend Ben's thread - do you remember? "The moon reflects a greater light not its own" - such a comforting thought and yet it was heartbreaking to read because we knew that he would not be with us for very much longer.

I feel in my heart TG that your storms are also past and you are moving towards that phase of calm and peace. Hopefully, any pain is now well under control. My heart aches for you, for Karen and all the family but also selfishly for myself. You told Ben 'May your days be filled with sunshine' - Karen is your sunshine and she reflects your light as you reflect hers. Shine bright my friend because you know I don't like the dark xxx

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

Edited by member 09 Aug 2014 at 02:09  | Reason: Not specified

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

User
Posted 21 Aug 2014 at 17:14

George, Barry would have probably done a better job as a urologist than a lot of the ones we've come across. What a great story !!!

 

Fiona.

User
Posted 20 Aug 2014 at 14:26
A bit of me is still amazed and proud that TG kept the upper hand and kicked cancer's butt for the best part of 15 years. But right now I am just really angry that his decline has been so rapid and so hard for him to bear. His pain is being controlled now, thank God, but he has suffered unnecessarily for some months. We don't only need more funding into the causes and treatments of PCa; we should also be putting pressure on the government (and PCUK) to increase funding for research - and dare I say awareness-raising for medical staff - on the less common presentations of late stage disease (such as falling PSA and non-bone pain) as well as palliative care services.

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

User
Posted 22 Aug 2014 at 23:52

When I first saw TGs last post written by James I couldn't hold back the tears and then I thought " I knew he would have the last word" and that made me smile. It wouldn't surprise me if he has left monthly updates for the next fifteen years.

One thing I do know if there is a PCA forum up there, then he is already typing away.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Jul 2014 at 19:02
What a strange day, I keep hallucinating and this is quite bewildering even as I write this now I am writing pure rubbifish and actually wrote whether word Vikings instead of something else.

This is now Karen taking the iPad off Barry and finishing his post. He is very confused and keeps falling asleep which may be the infection, the cancer or the drugs but I am now making him say goodnight to you all and closing down for the night. If he starts up again and writes gibberish this is why but says he intends to be back refreshed soon and to remind you all that Life is for living. Night night x

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 29 Jul 2014 at 21:40
Hi Karen and Barry

my heart is really with you both, this is the hardest thing to deal with facing what might lie ahead. Mick was very troubled about this and the only thing that helped him was that extremely difficult conversation with the palliative care consultant.

It is so hard on the bad days but you are so strong for each other, all you want to do is make things as gentle and caring as you possibly can.

Have strength dig deep into that courage pool and hold your heads up high knowing that there are hundreds if not thousands of people out there willing you both on.

xxx

Mo

User
Posted 31 Jul 2014 at 00:36
I went off on holiday fearing that you might not get to days 46, 47, 48. I should have known better, TG's not going to be parted from his soulmate without the fight of all fights. My friend, I hope those dreadful leg sores are now improving and that the adjustments to your meds are bringing the pain back under control. I love you to bits but I am not sure I would have sold my car for you .... Karen must really like you. If you have absolutely decided that home is where you want to be, then I know your team and your family & friends will make it happen although I suspect that you are going to have to help everyone to help you by summoning every ounce of that strength & determination that has got you through so many scrapes in the past. If like a cat you have 9 lives, I reckon you have at least a couple still in your piggy-bank.

I shall rename you Top Cat xxx

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

User
Posted 09 Aug 2014 at 09:14
Lynn

Perfectly expresses the feelings of many here. Karen and Barry remain in our hearts and thoughts at this difficult time.

I wish I could say more, but am unable to express my sentiments at the moment. All I can do is to pass on my dearest love to you both and hope that peace and love surround you my dear friends.

With love

Allison and John xxx

User
Posted 15 May 2014 at 10:03

This conversation is a continuation of the archived thread '15 years on', which you can find here: [First page] [Last page]

 

 

Edited by moderator 15 May 2014 at 10:35  | Reason: Not specified

User
Posted 16 May 2014 at 18:25
Mo, you are such a spoilsport. Karen might be hoping for a bit of action with a Viking!

πŸ” πŸ”«, I was just thinking about the first Leicester do when we were all joking about thin walls and disturbing the neighbours. Don't think there will be much risk of that this year with you lot, but I don't want to be next door to you in case I am kept awake by the noise of your hair falling πŸ“’

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

User
Posted 19 Jun 2014 at 23:37
You did not dream this TG and I must reply to your email but am waiting until Saturday to check a) what dates I am actually in Poole and b) to make sure it is okay with Karen as well. I've heard you make a habit of inviting strange women to stay and I don't want to arrive only to find I am sharing a bedroom with Tommy due to overcrowding.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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 08 Jul 2014 at 11:01
Well I am at the Hospice having been driven there by No1 so who left home at 5am to take some of the stress away from her which is very kind of him and as us Military types knows goes beyond the call of duty...it's taken over 30 minutes to post this due to a a befuddled mind (more morphine matron) so I will hand over to my son.....

Ok, dad is settled in, filled out a few forms, the chap opposite make dad look fighting fit. Joking aside he isn't well. Karen getting down here later. I was a bit worried when the nursed asked if we liked faggots, then realised she was talking about lunch!!!

No 1 son. Will keep you posted.

User
Posted 13 Jul 2014 at 19:11
Hi all

Been down today and seen dad, Top Gun as you know him, at the hospice. He isn't well but still fighting and wishes you all well

James.

No one son

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 09 Aug 2014 at 18:43
Thinking of you both, day in day out.

You're in out hearts, thoughts and prayers

Warm hugs from Lynn and George

xxx

User
Posted 11 Aug 2014 at 15:59

Hi Barry (and thank you James for typing).

 

Au revoir my friend (we WILL meet again!).http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

No fat lady is singing yet, but when she starts, give her a kick on behalf of us all.

 

I fully understand your position now and know that you've achieved all you needed to on 'That List' - and you've done it with style.

 

Our thoughts and prayers are with you, Karen and all your loved ones.

 

We'll continue our parties in the sky, Barry.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

God bless you.

 

 

Thank you for all you have given us,

 

George, Lynn and Katrina.

User
Posted 19 Aug 2014 at 20:49

Thanks George for letting us know, although we all understand that time is short for TG I think I can speak for everyone in saying our hearts go out to Karen and all of the family.

Fly Free TG , Fly Free.

XXXX

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Aug 2014 at 16:14
Devastated to say that Barrington Newman slipped away from us at 1.40 this afternoon.

Get'um Top Gun xxx

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

User
Posted 21 Aug 2014 at 21:03
Many thanks, James, I have done just that.

What a remarkable note left to us by a remarkable man.

Barry,old friend, we salute you!

George

User
Posted 21 Aug 2014 at 21:04
Hi

Topgun's funeral is 12:15pm 2nd September at Weymouth Crematorium, Quibo Lane, Weymouth DT4 0RR.

Karen has asked for flowers from close family only, but donations would be welcome to either The Joseph Weld Hospice, or South Dorset prostrate cancer support group. Karen will be making a donation to the Joseph Weld Hospice, where TG spent his last weeks. I will provide details of how to do this later.

The funeral will have a military theme, so wear poppies or Help the Heroes insignia would be appropriate.

James (No one son)

User
Posted 24 Aug 2014 at 15:57
John Bolton has been struggling to access the forum and asked me to post this on his behalf:

Karen and family

I have read the many glowing, deserved tributes to a truly couragous

friend. Anyone who had not met him has a graphic, accurate, picture

from the postings of the past few days. I wish I could be with you to

share what I know will be a fitting celebration of Bary's LIFE. I shall

be thinking of you all.

My own tribute, whatever words I might muster, will be inadequate but,

after much contemplation, I owe him an attempt at the vey least.

Barrington Newman's left our ranks - We owe him enormous thanks.

"Life is for Living", his battle cry - Words we came to know him by.

Salute his front-line courage right to the very end

His legacy - our standard. Farewell our dear lved friend.

RIP Top Gun

John Bolton

User
Posted 14 Sep 2014 at 07:53
Hi

Just to let you know we had a big family dinner at my house last night, except for one person.

We opened a couple of bottles of champagne and toasted Topgun. No tears or mourning like he said but remembering him. Anyway we had a good weekend just every now and again you realise someone is not there :(

Chris is taking Karen back this afternoon. She seems ok but next few days will be hard as it will be the first time since the funeral in her house on her own.

She says she will be going to the "London event" so she may see you there.

User
Posted 15 May 2014 at 10:42

Welcome to the dark side Barry, that's two of us now http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Julie is still trying to sort out her avatar so she might be awhile before she joins us http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 May 2014 at 19:20

Hi Barry,

Not the best numbers but just love your attitude http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Now the ALP challenge you set with a prize of 25 pints http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif , i get my bloods tomorrow and that's the final one before Leicester so a winner will be declared. Now i am a bit confused did we say highest or lowest ?

Now you tell me the hairs falling out, now is this the Chemo or have you just shaved it hoping i don't recognize you at Leicester and grab a random bald bloke carrying a bear and demand my 30 pints http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Will post results tomorrow, get them bags packed

Best wishes

Si x   

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 May 2014 at 11:01

Well did you get back or is there a rolled up bit of artificial grass bobbing about in the sea

 Just to say i am not bitter about not getting the pictures i got them second hand from Mo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

 

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 May 2014 at 09:43
Hi all,

Thanks for the welcome home messages the break and wonderful Norwegian air and scenery did us both the world of good.

I thought though that I would give you an update on the free PSA testing regime which we, in conjunction with PCaSO Bournemouth, started here in South Dorset back in November 2013.

Although no longer running the Support Group it is something that I am proud of in that as chairman at the time it was my idea that got the programme running.

To date the group has run 4 events, testing 495 men of which 71 were advised to go to their GP to discuss things. There are already 2 more days planned in the next 2 months and that will now cater for another 300 men (the team are now finely tuned and can deal with an increased number)

I and the group have been very lucky that my successor is doing a great job and The South Dorset Prostate Cancer Support Group is in safe hands (albeit it could do with a shortened name)

I am of course still in touch with many of the members and still kept in the loop so to speak with email updates, newsletters etc. which is kind of them.

Four years since the group was formed.....one of my better ideas😎

Life is for living

Barry (alias Barrington )

PS if anybody wants to know how this PSA (finger prick, immediate result) test works please email me through this site.

User
Posted 31 May 2014 at 10:52
Hi Johsan,

I have had your private message but don't know how the reply works? Still not got to grips with the site.

The pants you refer to are the ones, about 12 in a pack and really work.

Hopefully it will all be plain sailing but you are right to have a pack at hand just in case. They do get a bit uncomfortable after a while when sitting but what the heck.

Best of luck for Tuesday

Life is for living

Barry (alias Barrington )

PS I have tried to reply to your private message

User
Posted 31 May 2014 at 17:04
Hi all,

I have tried to post this message under "New Topics ...Social" but haven't seen it appear so thought I would add it here......

Hi all,

Within the new site I think this is a good as place as any to wish JANET (jIbatty) a very Happy Birthday. Very many members of this site who know Janet will recognise the wonderful support she quietly gives to those of us who suffer from this insidious disease.

For those of you who don't know Janice, she sadly lost her husband, Mike, to PCa 4 years ago. She was magnificent then but over the past 4 years she has travelled throughout the country and abroad at her own expense giving her support and help to those in need. She attends all of our gatherings and will of course be at Leicester.

We who know her have come to love her and if ever a lady deserves to have a very Happy Birthday it is OUR JANET

If tonight you are having a drink please raise your glass to a very special lady and wish her a Happy Birthday πŸΈπŸŽ‰

Life is for living

Barry (alias Barrington )

User
Posted 09 Jun 2014 at 01:54
Hi all, Yes you too No 1 son,

Actually you don't know the half of it. Of late if I stand for more than a few minutes I get a terrible feeling of downward pressure and pain in my bowels and the need to actually open my bowels, this is worse if I am having a wee. It also feels as if there is an obstruction there. The combination of the two counter - active sensations is not pleasant at all.

So far I have managed to contain things ....but wind....if you set light to it I could be used as a mobile flame thrower.

As you will have seen the Newman household has had a troublesome few days but throughout No 1 son has been a star.

I tend to forget that it is his children he took to the funeral, it is his sister who's partners father is seriously ill, it is his Mum who has a very aggressive form of leukaemia and yes it is his Dad that isn't in the best of health.

No 1 son has taken on, at least as far as family is concerned, worries that could overcome many a soul. Moreover he has been going up and down the country being there for everybody, he and his wonderful wife have been supportive beyond belief. As I said earlier it is easy to overlook that he must share these worries, they are all people who he loves and he himself could easily get down, but no he really has been our rock. (With my Karen alongside I have the beginnings of a wall!)

I am so proud of him and I will take a lot of pleasure in introducing him to the many of you on this site who will be at Leicester when he drops me off. I am hoping that he and his wife will join us for the evening meal when he comes to take us back, will wait and see. Thank you James for taking over my role and looking after everyone in a time of need.

Now to the week ahead, I think I will see my GP on Monday despite the fact I am seeing my Onco on Wednesday to discus the results of last weeks scan. I think a physical examination with a gentle feel up the bum might help in determine if there is an obstruction etc there. Whilst my Onco will I guess be concentrating on the spread to the liver, lungs etc it is the pain in the bum which is rapidly dragging me down. Perhaps, just perhaps my GP will see/feel something that a scan might miss.

Then on Thursday, dependant on chat with Onco, another session of chemo. So far chemo has been relatively kind to me, just a bit of tiredness and a loss of taste buds, as to whether it's working....who knows....well my Onco hopefully!

Take care all,

Life is for living

Barry (alias Barrington )

Edited by member 09 Jun 2014 at 05:36  | Reason: Not specified

User
Posted 11 Jun 2014 at 12:05

TG you #1 Son is a star just like you ..way to go James we all love you already xxx sorry Julie and Lyn 

I may have been quiet for a few days but I am still thinking of you daily and worrying about your bottom issue. Sounds like your GP is one of the old school just like ours, they are a godsend believe me. If it is a tumour and they can zap it then that should at least ease your pain. You might find that faeces are forming behind it and only small amounts can pass around it, I am surprised you have not been advised to take Macrogol or one of the other medications to make things much looser. At least that would help slow down methane production and possibly save the planet xxhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

So looking forward to meeting you all at Leicester stay strong my friend

xxx

Mo

User
Posted 11 Jun 2014 at 17:56
Barry

It is difficult to know what to say, but one can only admire your determination to enjoy what is out there, and the calm in your postings.

Enjoy Leicester and have a wonderful anniversary.

Paul

Stay Calm And Carry On.
User
Posted 12 Jun 2014 at 07:00
Hi all,

Thank you all for your kind messages, what a team to have behind you. A team like ours could help put to rights some of the misery and warmongering that goes on in this crazy world of ours.

As always one can find a good side to bad news, in the early evening yesterday I sat outside contemplating things with a beer in hand. Just the one but it was a beer that I hadn't had for a long time..........trouble was I preferred it with a lemonade, taste buds obviously not back in full working order just yet.

I still have to take steroid medication albeit less, as apparently you have to be weaned off it.

Karen is on the final day of her "Level 2 Counselling Skills Course" after 10 months of hard graft. With all that's gone on these past few months it has been very hard for her but she has come through with flying colours......had a good patient to practise on! She will be doing level 3 next year which would enable her to work as a councillor and she is looking at studying for a further two years to gain a degree. For certain she will make an excellent councillor (is already) with no wishy washy ways.

Last night was my local support group meeting, I, for obvious reasons didn't go but Karen went along for 30 minutes or so to give a run down on myself and had a little chat about "Advanced Care Planning" (she had just been to a seminar dealing with that). Many don't want to know but to my mind it is something all of us on here should think about, you never know what's coming round the corner. Having a simple plan in place makes things so much easier for those that have to deal with it if it is a number 7 bus that comes around that corner!

Well it looks like being a beautiful day, Karen will be going on her course I don't have chemo so it looks like getting the hammock out and doing some Egyptian PT ( military term for sleeping)

Best wishes and thank you again,

Life is for living

Barry ( alias Barrington)/

PS enjoy Le Mans James, make sure you don't get stopped for speeding and having your car impounded and having your wife to come and get you this time...we need you to take us to Leicester next week.

User
Posted 13 Jun 2014 at 02:17
TG, you may both have had previous partners & all that stuff but fate brought you to each other all those years ago and what always strikes me is that you really do adore each other. I don't think Karen would care whether she is on a champagne boat or sitting in the (artificial) back garden as long as you are by her side.

You are worth every penny of the Β£25,000 x

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

User
Posted 17 Jun 2014 at 08:35
Barry my friend, karen and i will be there could not miss the chance to meet you and yours as you helped us so much in our own batlle. Your courage inspired Mick. I think of you daily as i do all our forum fighters.

Hope you can get the pain under control asap and enzalutamide keeps you on the front line for as long as possible.

Xxxx Mo

User
Posted 19 Jun 2014 at 17:23
Great to check in and see two bits of great news for you, TG - pain under a bit more control at last and people confirming that they think you are someone very special. I also think you are a very special man so I have renamed our downstairs loo in your honour x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2014 at 19:53
This will be a very short message and I will add more later but this is to say a BIG THANK YOU to George and all the marvellous people who make the Leicester get together the great success it is.

So many kind wishes totally over the top and very embarrassing .

Thank you, I will add more tomorrow , God Bless You All,

Life is for living

Barry (alias Barrington )

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 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 03 Jul 2014 at 02:44

Barry, all I can say is what a good and caring GP you have. You may recall in one of my posts towards the end of Mick's fight I mentioned his very long and difficult chat with the palliative care consultant at the hospice. This included the treatments Mick was prepared to have towards the end game and those he did not want. It also covered where he wanted to be. I sat with him through the whole discussion so that I was a) aware of his preferences and b) could help if difficult decisions had to be made. It was extremely hard for me trying to hold back on emotions that had been held inside for such a long time. Having said that it was an experience that Mick said he found very helpful he said it made him feel at peace with himself and gave him confidence that his wishes would all be respected. The most difficult part is probably deciding when and if you want to have that discussion. It is not the start of the end by any means at all but I think you would agree it is far better to plan and give yourself total control.

You also have to remember though that Mick was unable to do many things following his spinal cord compression, you still have the ability to do many things, setting your goals and targets is a vital part of all this. Listen to your body and if lying in your hammock in the sunshine is as much as you want to do so be it.

You have shown how brave you are countless times so I am sure that the challenges ahead hold no fear for you. If anyone can defy the odds you can, especially with Karen and your wonderful family there to support you.

I think of you all every single day you know how much we all love and respect you so make sure you rest mentally as well as physically so that you can enjoy your trip to Dublin with Karen.

xxxx

Mo

User
Posted 06 Jul 2014 at 22:35
Not been on for a few days Barry as we have visitors from foreign parts eating and drinking us out of house and home plus numerous excursions to go on. Loving it really, talking a huge leaf out of your book and just getting on with living.

However, that doesn't mean that you are far from our thoughts and let's see off that blasted infection, come on me old china, you can do it.

There's hammocks to be resting on and Ghurkas to be seen.

Big love

Allison xxx

Edited by member 06 Jul 2014 at 22:36  | Reason: Not specified

User
Posted 07 Jul 2014 at 09:43
Well the fight goes on and what a fight it is becoming. Total blockage on the urine front leading to severe pain in chest right side just below rib cage. The pain really was severe and I cancelled seeing my Gurkha friend and he fully understood. At about 6pm the pain was such that we had to call the on call doctor (weekend). He was very good and inserted a catheter with bag and nearly 2 Ltrs came pouring out. The pain slowly subsided and after a very disturbed night during which Karen, bless her, reached over to see if I was still in the land of the living I am in fact still here to tell the tale. I am going to my own surgery later this morning although my own GP is on holiday. We will have to discuss this catheter business and if I have the chance I would like to go back into the Hospice. Being a realist I can't see us making Dublin but I'm not cancelling it yet, perhaps I will have to set daily targets........after all....

Life is for living.....each and every day

Barry (alias Barrington )

User
Posted 08 Jul 2014 at 16:17
Barry and James

It is good to know that you got to the hospice safely, thanks to James, and you are now settling in. So pleased to hear that the pain control has started – even if you are a little befuddled at the moment.

As George has already said, we need to hear some good updates now to show that you are comfortable.

Best wishes

Alan and Celia

User
Posted 08 Jul 2014 at 18:41
Thanks for the update TG/James. Hopefully they will get the treatment sorted and you will be able to start posting again very soon

Take care

Bri

User
Posted 10 Jul 2014 at 22:42

Dear Barry

I have been a long time admirer of yours and , although you have only given us brief accounts

of your life history I can see that you are a true warrior through and through as you show all the

traits of a soldier , or should I say British soldier , the best in the world, with your courage and

sense of humour under relentless , painful conditions.

I have had a couple of pints, which I am sure you will not begrudge and I would like to express

the gratitude that the public feel towards you and your comrades for defending us so magnificently

over the years. It is a poem by Kipling entitled, quite appropriately 'Tommy' and it illustrates how

little our forces are appreciated until the guns begin to fire. I know that you will completely understand

the sentiments of this piece and be aware of how highly you are thought of. The message is still

the same today as it was when this was written

Love

Ray and Beryl

 

TOMMY

I went into a public-'ouse to get a pint o' beer,

The publican 'e up an' sez, "We serve no red-coats here."

The girls be'ind the bar they laughed an' giggled fit to die,

I outs into the street again an' to myself sez I:

   O it's Tommy this, an' Tommy that, an' "Tommy, go away";

   But it's "Thank you, Mister Atkins", when the band begins to play,

   The band begins to play, my boys, the band begins to play,

   O it's "Thank you, Mister Atkins", when the band begins to play.

 

I went into a theatre as sober as could be,

They gave a drunk civilian room, but 'adn't none for me;

They sent me to the gallery or round the music-'alls,

But when it comes to fightin', Lord! they'll shove me in the stalls!

   For it's Tommy this, an' Tommy that, an' "Tommy, wait outside";

   But it's "Special train for Atkins" when the trooper's on the tide,

   The troopship's on the tide, my boys, the troopship's on the tide,

   O it's "Special train for Atkins" when the trooper's on the tide.

 

Yes, makin' mock o' uniforms that guard you while you sleep

Is cheaper than them uniforms, an' they're starvation cheap;

An' hustlin' drunken soldiers when they're goin' large a bit

Is five times better business than paradin' in full kit.

   Then it's Tommy this, an' Tommy that, an' "Tommy, 'ow's yer soul?"

   But it's "Thin red line of 'eroes" when the drums begin to roll,

   The drums begin to roll, my boys, the drums begin to roll,

   O it's "Thin red line of 'eroes" when the drums begin to roll.

 

We aren't no thin red 'eroes, nor we aren't no blackguards too,

But single men in barricks, most remarkable like you;

An' if sometimes our conduck isn't all your fancy paints,

Why, single men in barricks don't grow into plaster saints;

   While it's Tommy this, an' Tommy that, an' "Tommy, fall be'ind",

   But it's "Please to walk in front, sir", when there's trouble in the wind,

   There's trouble in the wind, my boys, there's trouble in the wind,

   O it's "Please to walk in front, sir", when there's trouble in the wind.

 

You talk o' better food for us, an' schools, an' fires, an' all:

We'll wait for extry rations if you treat us rational.

Don't mess about the cook-room slops, but prove it to our face

The Widow's Uniform is not the soldier-man's disgrace.

   For it's Tommy this, an' Tommy that, an' "Chuck him out, the brute!"

   But it's "Saviour of 'is country" when the guns begin to shoot;

   An' it's Tommy this, an' Tommy that, an' anything you please;

   An' Tommy ain't a bloomin' fool -- you bet that Tommy sees!

 

 

User
Posted 14 Jul 2014 at 11:52
James you are all in my thoughts every day if your dad is not up to a proxy hug from me via you then please give karen one and give dad a virtual hug (xxxx) from me

Xx Mo

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 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 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 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.

xx

Mo

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

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 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 06 Aug 2014 at 21:58
My heart is heavy and you are both on my mind tonight Karen

TG, if you feel safe where you are then perhaps we should just forget the whole scone thing for now and concentrate on getting the pain and temperature sorted. Home is wherever you are together anyway. I shouldn't think you will be looking at emails or forums but you don't need a screen to know how much I think of you and how much we are willing you on to fight this infection. Just not ready to say goodbye yet my friend so you nail this please xxx

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

User
Posted 06 Aug 2014 at 22:29

Barry and Karen

I cannot attempt to put into words a fraction of what I'm feeling and have done for these past weeks but I know I am but one in a large number of supporters reaching out to you both. You can probably feel our love and our need to know you are free of pain and infection. Our collective arms reach out and we salute your grit and how you have always been there for us all, both of you.

Thank you so much our 'Top couple'

User
Posted 09 Aug 2014 at 18:26
Hello all, this is Karen. Barry has been in a very befuddled state and we are both very tired but thank you for your prayers and good wishes xx

User
Posted 10 Aug 2014 at 16:21
Hello to all my lovely friends,

The time has come to let you know that this is, in all probability, my final e-mail as I feel the game is up. I have fought the good fight, and had 15 years of this. I wanted to go home from the hospice but accept I can no longer move around at all and much of the time I am no longer lucid. Karen remains with me and I have seen family today including Chris and Laura. James and Jacqui are coming tomorrow.

Thank you for your continuing support and I wish you all a strong fight that will see you through the coming years

Life is for living

Barry (alias Barrington)

Edited by member 10 Aug 2014 at 20:00  | Reason: Not specified

User
Posted 10 Aug 2014 at 18:06

Dear Barry,

I salute you.

 

I can't express my feelings, too emotional, but I do salute a guy I am privileged to have known as a friend for many years.

 

We've shared a lot of fun and some very sad times too over those years, and you never ceased to lift me - and all those you met.

 

 

We think the world of you and Karen.

 

 

 

Take it easy,

 

 

George and Lynn

 

 

 

 

User
Posted 10 Aug 2014 at 23:55
Well, you are probably waiting for one last bo**ocking from me and I would hate to let you down now. The game is never up, don't ever think you lost the war. You might have lost a battle here and there but you out-manoeuvred the enemy time and time again and left him battered and bruised. You won the war, because you did everything on your own terms and in your own way. And even now when it seems that there is no more fighting to be done, you are still the winner because you never surrendered.

Fly free, my lovely friend x

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

User
Posted 11 Aug 2014 at 00:10
Barry you are in my thoughts andj prayers tonight have a restful night. I can't say goodbye to another good man.

I will just say nite nite for now.

Carol

User
Posted 11 Aug 2014 at 09:24
"I Did It My Way" may be an old chestnut,but IMHO its what sums you up Barry,god bless.
User
Posted 11 Aug 2014 at 16:18
Hi

Karen and I have logged him off the account.

Should he manage to get back in please take no notice of any posts unless it's typed by Karen or myself as sometimes dad types a post without knowing what he is typing and could be meaningless.

James.

User
Posted 11 Aug 2014 at 23:15
Barry Karen and family I honestly haven't the words to help you at this time everything has already been said and what a tribute to a good man.

I remember when you and Eric were having chemo you tried the coldcap Eric.thought great Barry can try it first when I read him your post that you wouldn't take it again that was a no go area for him both of you were so vain.Eric.wanted to meet you all at your next meeting with all the gang .sadly he never made it .but you never know maybe you will meet soon.please have a peaceful night be pain free.

My best wishes to you all at this time.

Carol x

User
Posted 20 Aug 2014 at 13:57

Sending all my love. Glad Barry is not in pain and his wonderful family are with him, I mean the online one as well !!!

 

Fiona.

User
Posted 20 Aug 2014 at 16:27
Today we have lost a true Hero, R.I.P. Barry

xxxx

Mandy Mo

User
Posted 20 Aug 2014 at 18:11

 

 

This was the picture Karen posted this afternoon, diamond geezer

 

<a href="http://s1338.photobucket.com/user/siness/media/barry_zps711e02fc.jpg.html" target="_blank"><img src="http://i1338.photobucket.com/albums/o699/siness/barry_zps711e02fc.jpg" border="0" alt=" photo barry_zps711e02fc.jpg"/></a>

 

Edited by member 20 Aug 2014 at 18:12  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Aug 2014 at 22:15

Farewell old soldier.

We're going to miss you..........

 

Love

Ray and Beryl

User
Posted 21 Aug 2014 at 12:17

Thank you James for such a wonderful post.

 

Anyone reading that would have no doubt at all that you're your father's son.

It was like reading a post from Barry himself.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

The 'other site' mentioned by Karen was Bollocks2PCa and your dad had been a big part of that 'naughty boys' (and girls) group for years.

He will be a huge miss at our Leicester meet-ups in June, and the December ones in London.

He was one of the nicest, bravest, funniest guys around and loved by all.

 

http://i1235.photobucket.com/albums/ff437/R_U_NUTZ/0%202014%2008/2014BarryToursMemoriam.jpg

 

Did you know, he once came to Leicester dressed as a urologist, with hospital uniform, stethoscope and an ID badge reading 'Dr Ben Dover'?

 

From us all at B2PCa, please accept our sincere condolences. Yesterday was the saddest day for all who knew your dad, and our hearts go out to you, Karen and the family. Your dad was hugely proud of you all.

 

It was good to finally meet you on 21st June this year.

 

Warmest wishes,

George

Edited by member 21 Aug 2014 at 17:11  | Reason: Not specified

User
Posted 21 Aug 2014 at 21:02
James, thank you so much for posting, and how typical of Barry to write and arrange for you to post such a wonderful and thoughtful message.

Barry has always been such a special friend to so many of us, always thinking of and helping others no matter what he was going through. As we go on day by day we will remember him so often and try to live up to his wonderful example.

You are all in my thoughts, love Janet, xx

User
Posted 21 Aug 2014 at 21:06
Ahhhh Barry, brought tears to my eyes.

God bless you.

xxx

User
Posted 21 Aug 2014 at 23:04
Thank you James, what an inspiration your father's last message was, and thanks for the information for the Crematorium, we hope to be there.

We have 'bought' a Poppy placed at the Tower Of London which we will dedicate to Barrington, R I P.

Chris and Shirley

User
Posted 21 Aug 2014 at 23:57

So sorry to hear this news. I never met Barry but followed his story on here and also saw all the support he gave to others. I am sure he will be sorely missed by everyone.

Deepest condolences to his family. I hope you take some comfort for the special life he led and the high regard he was held in.

Lorraine x

User
Posted 22 Aug 2014 at 08:35
Wonderful touch from Barry and typical of the man. I had intended to go to Barry's funeral but sadly I will be out of the country on that date. I will in fact be in Hong Kong which I know from talking to Barry is one of the places he has great memories of. So at 7.15 pm on the 2nd, (HK is seven hours ahead) I will raise a glass of Tsing Tao to Barry and be with you all in spirit as you celebrate his wonderful, unique and so memorable life.
User
Posted 22 Aug 2014 at 10:34

I will always appreciate TG's responses to my posts, even when he was clearly in pain and knowing he did not have much time left.  I am sure his legacy will live on with many PCa sufferers and his attitude to life is a true inspiration.

 

Paul

Stay Calm And Carry On.
User
Posted 22 Aug 2014 at 10:41
Sorry to read this.

RIP, and thoughts to all family and friends.

Dave

User
Posted 22 Aug 2014 at 12:13
It's is with deep sadness that Kim and I read the news of Barry's passing. Although we knew this was to be soon it still hit us hard.

Barry was one exceptional man and will be sorely missed by so many people; he left an impression on so many lives.

Although he will be missed he will never be forgotten and his words and actions will always be with us. How could they not.

Even at this terribly sad time he has still managed to leave one final very personal message. This alone shows the depth of Barry's caring for others. It made us both feel very humble and brought tears. Bless you Barry.

No doubt Barry will be partying with passed friends now, but also always looking down on his beloved family urging them on that 'life is for living'.

Our thoughts and wishes are with Karen and family and hope some of Barry's amazing fortitude will help them through the difficult times.

With sincere condolences

R.I.P Barry.

Veronica and Kim

User
Posted 22 Aug 2014 at 21:57

Karen,  so sorry to hear that Barry has gone.

Such a sad time even though it was expected, it does not make it easier.

Please take comfort in knowing how much Barry was loved and respected for all he did for the people on this site. 

He was a truly great individual who loved his fellow man.

I am sorry we will not make the funeral as we will be away. 

I do hope we will see you at one of the B2Pca events.

Love and hugs to you and all the family.

 

Keith & Nette

User
Posted 23 Aug 2014 at 08:39
RIP Topgun.

Another one of my heroes sadly leaves us. Barry had been a great inspiration during my journey.

His memory and legacy will live on in the minds of many of us on this amazing forum.

My sincere condolences to his family.

User
Posted 23 Aug 2014 at 12:22
So sorry to hear Barrys fight is over. Thinking of you all at this sad time.

Max

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

User
Posted 23 Aug 2014 at 22:09

Just spent my evening reading TG's story.  What an amazing man, what an inspiration to others!  Love the message that he left for James to put on after his passing.  Thinking of you all at this difficult time xx

 

Rachel

 

 

User
Posted 25 Aug 2014 at 13:04

I was saddened to hear that Barry is no longer with us. I visit the site infrequently these days but since my arrival on the PCa scene in late 2010, Topgun has been at the very forefront of those on this site who give of their knowledge and support so generously; stalwarts all. I met him only fleetingly at Leicester 2011 but Barry's strength of character is reflected in both his Service record and by his contribution here, particularly with his final thoughts to inspire all of us whilst in pain himself and facing his final moments. I can only hope that I face whatever awaits me with a small measure of his courage and fortitude.

My condolences and thoughts go to you, Karen, and your family.

Chris 

 

 

 

Edited by member 25 Aug 2014 at 13:07  | Reason: Not specified

User
Posted 25 Aug 2014 at 21:16
I am deeply saddened to read that Barry has lost his battle.... He always had kind words with wisdom when my graham was first diagnosed and throughout his short battle with this devastating disease ... Rest in peace and love and peace to your family ... Our Top Gun xxx

User
Posted 27 Aug 2014 at 12:05

I have just returned to the forum after a long absence..... I was shocked and gutted that Barry has passed on having seen in in December looking and acting much as usual.

 

He was a "kicker" till the end - and gave everyone hope especially the newly diagnosed - a great guy.

 

RIP Barry

 

Ross

User
Posted 02 Sep 2014 at 09:24
Thinking of you all today Karen,

xxxxx

Mandy Mo

User
Posted 02 Sep 2014 at 12:12

My Thoughts are with you all today.

XXXXXXXXXXXX

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Sep 2014 at 14:00
My thoughts are with you all today and the coming months.

Carol

User
Posted 02 Sep 2014 at 20:57

A life well lived http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Barry was a decent bloke, a bit crazy and good fun. If he were my dad I'd be bloody proud of him, as I'm sure all the kids are.

 

Rest in Peace Barry and don't take the piss out of St Peter http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User
Posted 02 Sep 2014 at 21:07
Many thanks for sharing this James...so very fitting and so very typical of your dad to be thinking of others. A truly special person. Rest in peace Barry x
User
Posted 02 Sep 2014 at 21:54
Thank you James

I so enjoyed reading through this wonderful potted history, full of love and achievement. Your dad was quite a man and will be very much missed.

Well done for being able to read this out, it must have been very difficult but also such an honour.

Love to you and Karen.

Allison and yes, Life is definitely for living

User
Posted 02 Sep 2014 at 21:59
Really moving.God Bless you all. Alison
User
Posted 02 Sep 2014 at 22:39

My Goodness, what a guy. Thank you James for sharing that and Thank you TG for being you. The world is now a sadder place and I miss you on here dreadfully.

A wonderful man and a wonderful family.

Sleep tight TG.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Sep 2014 at 00:32
Thank you James for sharing, your dad was right to so obviously trust you to deliver his thoughts and represent him so well.

From first meeting Barry I realised he was such a special man, and each meeting since re-Inforced my initial thoughts. Barry influenced so many of us on this forum, and has left us with many special memories and thoughts.

I hope knowing how well thought of he has always been will help you, Karen and all of your family at this difficult and painful time for you all, love Janet

User
Posted 03 Sep 2014 at 03:23
Enough said, brilliant words from a simply loveable and brilliant guy. Rest well Barry!
User
Posted 03 Sep 2014 at 10:04

Top man, what a great life story and a what wonderful family he had. Barry gave me some good advice when I was first diagnosed and joined this website, I'm sorry I didn't get to meet him I person.

 

Steve

User
Posted 03 Sep 2014 at 12:17

Thank you James,

 

That wonderful message will be posted on B2PCa in a few minutes.

B2PCa

And yes, you're a member there now.

 

Your dad was a marvellous strategist you know.

He always 'had a plan'!

 

Months ago he posted me most of that message and asked that I read it out at our Leicester 'do' on Sat 21st June - in the event that he wouldn't be around.

 

I told him I probably couldn't do it myself because I'd be 'bubbling my eyes out', and that in any case we would need an interpreter there to translate Geordie into English.

 

I had absolutely no doubt he WOULD be with us at The Mill that day, and by God, he managed it, thanks to all your help.

 

It was good to hear how good his 'send off' was yesterday - and I should hope so too.

He would have expected nothing less. Knowing Barry, I bet there were quite a few chuckles during the ceremony.

 

Once again, farewell to a real HERO and one of the nicest men you could possibly meet.

 

 

George

 

 

User
Posted 03 Sep 2014 at 12:55
Thank you so much for sharing this James it shows just how much you are your Father's Son in being able to deliver it with just one wobbly moment. I would have been bawling my eyes out before I even started.

The words light up the fact that Barry could tell stories with such an array of emotions, I was laughing, crying feeling overawed at the diversity and fullness of his too short life then having a little anger that he should also be taken by this horrid disease. He did so much to raise awareness in others, support everyone whenever he could and do some incredibly crazy things that if there truly is an afterlife his will be for living part 2.

big hugs to all of the family

xx

Mandy Mo

User
Posted 03 Sep 2014 at 18:56

Thank you, James for posting your tribute to a GREAT MAN in Barry.  How you managed to keep going I do not Know, you certainly put it over so well.  What a wonderful Dad.  We would not have missed coming for the world,  and we were so pleased that Janet too made the effort ( straight from work, what a Lady).  She too does good works.  We will all miss Barry so much, and our hearts go out to Karen and the family. He was still there for others even when he was so near his end on earth.

 

The service was so uplifting and so "Barry" , what more can one say?  A lot of people to see him off in his special "BOX".  I'm sure a lot more people would have liked to have been there.  (We can't all take time out, but being retired, we have plenty of that!)

Our Love and Blessings

Chris and Shirley 

User
Posted 03 Sep 2014 at 19:46
I have not been on the forum for a few weeks and was shocked to hear the news .I sat and cried for a man never met but but respected so much .Thank you Barry for the encouragement you gave me. Your strength and resolve gives us all hope ,Your family must be proud of you . You gave it all Rest in peace
John.s
User
Posted 03 Sep 2014 at 20:30
What a life - what a man!
Barry
User
Posted 03 Sep 2014 at 23:05

Thank you James. It was great to see all the pictures again.

Chris.

Edited by member 04 Sep 2014 at 12:28  | Reason: Not specified

User
Posted 08 Sep 2014 at 15:42

James and the Newman family

 You have  honoured our dear friend in a wonderful way. He was, rightly, so proud of you all and you are a lasting tribute to him.

I knew there had to be a movie but didn't expect it so soon!!

(This is the fourth or fifth time I have tried to post a message similar to this in a week and I've been away for the weekend. If it fails this time I will not be back on the site for some time so fingers are well and truely crossed)

 

John B.

 

User
Posted 09 Sep 2014 at 11:16

Glad the funeral went well and love to you all. Fiona.

 

User
Posted 11 Sep 2014 at 17:40
God Bless you Barry. You were a brave and inspirational man. We will all miss you here.

Your family sound like wonderful people who will have many joyous memories of you.

I don't come on this site often now as I can't get used to it - I liked the old one . I'm not the "techno king" that you were Barry.

Hearing this news about you has knocked me for six.

Rest in perfect peace

Peter

User
Posted 12 Sep 2014 at 21:47

I understand that he as 90 years old and had been suffering for a long time with this dreadful disease. Fantastic that he reached this ripe age though and an inspiration to us all to keep fighting!

User
Posted 14 Sep 2014 at 13:07

Hi James,

So glad you had that family dinner and a good weekend.
That would put a smile on your dad's face!

Pass on our love to Karen, and tell her she will be among many of her good friends if she comes to London on 3rd December.
Looking forward to seeing her soon.


George

User
Posted 14 Sep 2014 at 23:34
Your weekend sounds brilliant, James, your dad would have approved, and will be great to see Karen in London, if not before.

User
Posted 16 Sep 2014 at 21:46

I am saddened to discover that Topgun has left us. Always supportive he seems to helped everyone he came into contact with. A keystone of this forum too, I will miss his wise words as I am sure we all will. He was such an important part of this virtual community which will lessened by his absence. 

My condolences and best wishes to his family and friends

 

 

Show Most Thanked Posts
User
Posted 15 May 2014 at 10:42

Welcome to the dark side Barry, that's two of us now http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Julie is still trying to sort out her avatar so she might be awhile before she joins us http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 May 2014 at 15:46
Hi all,

Well into the dark side, took a while but please read on:-

Onco yesterday and chemo today.....not the results I was hoping for regarding the liver bloods.

ALP ....should be 30-130 was 1197 before 1st chemo went down but is now up to 260 but is now 378

GGT....should be 60 was 1170 before chemo went down to 335 but is now up to 491

ALT.....should be 42 was 367 went down to 58 now up to 103.

So a bit of a let down.....well actually a rise up.

Onco is worried that either the chemo is not working after just such a short time or that the increase of dosage on the 2nd session was too strong and has reacted on the liver so today's dose reverted back to the amount given on the first one and we will see what that brings. I am also having a full scan in two weeks time which will see how things are doing, I can actually feel the nodules on my rib cage getting a little larger.

Didn't tell Onco about the cruise Saturday but told the chemo girls today, they are a little worried in case an infection / high temperature sets in as that needs immediate intravenous antibiotic treatment. As I told them though life is all about giving it a go though and at the end they agreed and wished me well. The ship we are going on has a very good sick bay, they even carry out dialysis so I'm sure they would have the correct antibiotics at hand....I can't be the only one travelling having had chemo.

My main worry is the fellow diners who will be wondering what the hell is going on with my daily receding hairline.

Well I hope this goes OK and is in the right place, will post a bit more tomorrow then off line up the Kyber ...Norwegian Fiords....much the same.

Life is for living

Barry (alias Barrington )

PS note especially for Paul.....no Smileys....well not exactly a smiley day....look out tomorrow

User
Posted 15 May 2014 at 16:03
I understand Barry! Difficult results but I guess there are no solutions here just varying degrees of relief. Hope the next treatment has the impact we all want!

Hope the trip goes well. Infections can appear from anywhere I guess its knowing you can get it treated which is key! But, your philosophy is so admirable that such positivity will get you through this.

On a lighter note I am still not sure that transferring the threads is the right approach. They are in a separate section but not meant to be archived. I don't really want to start a new thread but will wait and see!

User
Posted 15 May 2014 at 17:08
A minor point but its "Fjords" actually. ;-)

Have a great trip. Your attitude is somewhere out there between courageous and reckless! Add pigheaded, stubborn etc but go for it.

Is there any way you can obtain a supply of whatever meds you might need before you embark?

ATB

dave

User
Posted 15 May 2014 at 17:14
Not the results you wanted Barry but let's hope the reduced chemo makes things clearer. Love your resolve. Nobody can argue with you regarding your signature you are certainly proving to everyone that

LIFE IS FOR LIVING

Well done mate and have a cracking trip

Bri

User
Posted 15 May 2014 at 19:20

Hi Barry,

Not the best numbers but just love your attitude http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Now the ALP challenge you set with a prize of 25 pints http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif , i get my bloods tomorrow and that's the final one before Leicester so a winner will be declared. Now i am a bit confused did we say highest or lowest ?

Now you tell me the hairs falling out, now is this the Chemo or have you just shaved it hoping i don't recognize you at Leicester and grab a random bald bloke carrying a bear and demand my 30 pints http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Will post results tomorrow, get them bags packed

Best wishes

Si x   

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 May 2014 at 19:41
Originally Posted by: Online Community Member

I'm sure they would have the correct antibiotics at hand....I can't be the only one travelling having had chemo.

Erm ..... I think you probably will be!

I am sad that your levels are rising so soon, that's not supposed to be in the plan at all is it? Hey oh, old Al blew everyone's minds with some of his scores but he just kept on going like a Duracell rabbit (not to be confused with the Ann Summers version).

Are you going tomorrow or Saturday?

Lyn xxx

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

User
Posted 15 May 2014 at 20:48
Hi Lyn,

Try to keep up.....Saturday.

Also WOT about Allister and his chemo I think he is on the ship (Independence of the Seas) we are going on which is coming in from Fort Lauderdale, docking in Southampton on Saturday morning, quick change round and we sail in the evening, If not he has been on the Adventure of the Seas which sailed from the Caribbean.

Life is for living

Barry (alias Barrington )

PS sorry Si I thought it was for 50 pints over the weekend but like you was it lowest or highest? As for the baldy bit......reckon Tommy the Bear will have more hair.

Edited by member 15 May 2014 at 20:51  | Reason: Not specified

User
Posted 15 May 2014 at 22:09

Barry, don't worry about the hair, eldest has enough spare for 2 wigs so one in the wash and 1 to wear. I will have them ready for when you dock. OOOH get me with the nautical talk.

Not the best of news today and I can empathise with how you are feeling. Lets hope this is a reaction to the larger chemo dose.

For both you and Karen have a wonderful trip, take my love with you. Come back strong.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 May 2014 at 06:12
Hi Dave ((Countryboy55),

Pernickety old so & so, what's a J in the right place.....anyway I'm on an American ship πŸ’΅πŸš’they probably spell it FIOOORDS.

Just wanted to add on here that my PSA has gone down to 0.27 the lowest it has been since Richard Ablin discovered the damn thingπŸ”¬πŸ’‰

This of course despite spread everywhere, I think only Lyn understands that phenomena πŸƒ(nearest I can get to a witches hat)

Life is for living

Barry (alias Barrington )

PS Paul, the sun is shining, so smileys back in place

User
Posted 16 May 2014 at 06:50

Sorry to hear about your bloods TG, you almost caught up with Mick on ALP his went as high as 2139 but it was back down to 130 post chemo. I am not sure that PSA is very relevant now as Lyn documented. MIck has not had his tested since his short experience with Enzalutamide but I would not be at all surprised if his was finally below diagnosis level a year ago at 545. Have a great trip to see the Trolls (real ones not the ones that plague websites) make sure Karen does not get abducted by the Vikings.

Stay safe and see you at Leicester and at the wave past on Saturday week.

xxx

Mo & Mick

User
Posted 16 May 2014 at 13:11

Hi Barry

What a great guy you are, have great respect for you mate!! As you say LIFE IS FOR LIVING, have a FANTASTIC holiday!!!

Lesley x

User
Posted 16 May 2014 at 18:25
Mo, you are such a spoilsport. Karen might be hoping for a bit of action with a Viking!

πŸ” πŸ”«, I was just thinking about the first Leicester do when we were all joking about thin walls and disturbing the neighbours. Don't think there will be much risk of that this year with you lot, but I don't want to be next door to you in case I am kept awake by the noise of your hair falling πŸ“’

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

User
Posted 16 May 2014 at 21:11

Barry good luck with your cruise,http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

Come back stronger

User
Posted 18 May 2014 at 09:32
Blast sorry I missed this and therefore your departure on board Barry.

Not happy news about the blood results, I love the fact that the Onco doesn't give up though as who knows, it could be too much for your liver and a reduced dose might calm things down.

You are a total inspiration, I read your posts out to John and often see a tear spring into his eye, sometimes in sadness but sometimes in joy too.

Wishing you a wonderful, safe and infection free sail across the oceans blue.

With all my love to you and your wonderful wife Karen.

Love Allison xxxxx

Edited by member 18 May 2014 at 09:33  | Reason: Not specified

User
Posted 25 May 2014 at 11:01

Well did you get back or is there a rolled up bit of artificial grass bobbing about in the sea

 Just to say i am not bitter about not getting the pictures i got them second hand from Mo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

 

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 May 2014 at 18:02
Hi all,

Having been off site for over a week I have to say that it still isn't working very well with few postings being made under " all topics" possibly because there is no indication of who is posting. It seems to me that most are using the "recent conversations" and who can blame them? Unfortunately this new format is lacking the easy way things were accessed on the old system with postings and vital information being found under respective headings.

Right that's my moan over.

Back on dry land once more after a truly relaxing and enjoyable cruise up the Norwegian Fjords on the Royal Caribbean "Independence of the Seas" ...still our favourite ship. Everything was superb with the staff in particular being outstandingly friendly and helpful. It was the scenery though that was the highlight, Flam (pronounced flom) was the most beautiful place Karen and I have ever docked in and that includes the gorgeous Caribbean Islands. A small village arrived at after sailing through a fjord and surrounded on three sides by snow capped mountains. We went on the 20Km Flam railway an incredible feat of engineering with waterfalls on every side, a one off experience.

So all plain sailing, well not quite. With no insurance, on the Tuesday an incident occurred which showed what could go wrong. A gentleman had a suspected heart attack and was " choppered" off to a Norwegian hospital whilst his wife went ashore to be with him. One presumes that she had to find accommodation etc. and the financial implications of all that if as in my case one had no insurance is not worth thinking about. Obviously it is not the PCa itself that is the worry but any infection or temperature rise following chemo that is of concern with the later needing immediate hospital admission. On the Wednesday evening/night I had a total urine blockage but thankfully had brought some self catheters with me and that solved the situation but I do have a very weak flow, unable to empty my bladder and am going at least 6 times through the night which obviously upsets the sleep of both of us. Probably a TURP is in order but having had two with the last only a year ago I won't be going down that path again.

Away from that these past few days did us both the world of good able to chill out, enjoy good food (so Karen tells me as my taste buds are a bit haywire), good entertainment and meeting some lovely people. I wore a couple of PCa T shirts highlighting awareness and wasn't shy in coming forward and talking about the problems we all have.

To Mo and Mick so sorry you couldn't get on your cruise but your sail-away party sounds every bit as good, if not better, than ours and we will share our stories at Leicester. To those of you who I sent sent some photos to, hope you enjoyed them and just to reassure you Tommy the bear came through unscathed despite his encounters with Trolls and the occasional aardvark

All the best to you all,

Life is for living

Barry (alias Barrington )

User
Posted 25 May 2014 at 19:22
Barry, it is so good to hear you are back safe and sound after such a lovely trip. I somehow felt you were going to be fine, and Karen would enjoy the break and be able to relax, but oh, the relief to hear you are back safe. Love to you both, Janet βš“οΈπŸš£πŸš’πŸ—»πŸŒ…πŸ‘«πŸŒβ˜€οΈπŸŒˆπŸŒŠπŸ πŸ“·πŸŽˆπŸ·
User
Posted 25 May 2014 at 20:18
Hi Barry,

Glad you and Karen had a good and relaxing cruise but sorry you are having problems with retention and frequency. I do hope ways can be found of mitigating this problem other than by another TURP. I know the disruptive effect of having to get up so often at night - at one stage I was getting up anything up to 8 times a night during my RT. Anyway, you are both back safely without major disasters. Take it easy. See you at Leicester.

Barry
User
Posted 25 May 2014 at 22:52
Welcome back Barry, it sounds a wonderful trip. You may have considered this but wondered whether you self catherise before bed? I was getting up about every hour or less a few months ago and sometimes not making it! I started to self catherise just before bed and also measured it. I was at that time drawing off between 450-500 mls. Suddenly I was getting through the night. I now routinely do it twice a day and get relief from constant peeing (except when I have a UTI of course) just a thought!

Edited by member 28 May 2014 at 12:53  | Reason: Not specified

User
Posted 28 May 2014 at 09:43
Hi all,

Thanks for the welcome home messages the break and wonderful Norwegian air and scenery did us both the world of good.

I thought though that I would give you an update on the free PSA testing regime which we, in conjunction with PCaSO Bournemouth, started here in South Dorset back in November 2013.

Although no longer running the Support Group it is something that I am proud of in that as chairman at the time it was my idea that got the programme running.

To date the group has run 4 events, testing 495 men of which 71 were advised to go to their GP to discuss things. There are already 2 more days planned in the next 2 months and that will now cater for another 300 men (the team are now finely tuned and can deal with an increased number)

I and the group have been very lucky that my successor is doing a great job and The South Dorset Prostate Cancer Support Group is in safe hands (albeit it could do with a shortened name)

I am of course still in touch with many of the members and still kept in the loop so to speak with email updates, newsletters etc. which is kind of them.

Four years since the group was formed.....one of my better ideas😎

Life is for living

Barry (alias Barrington )

PS if anybody wants to know how this PSA (finger prick, immediate result) test works please email me through this site.

User
Posted 28 May 2014 at 20:21

Barry I have just realised that I didn't welcome you home. I am so glad you and Karen had a such a lovely time .  The fashion accessories were brilliant, (T shirts and waistcoat)

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 May 2014 at 12:06

Hi Barry

I didn't realise that you had been looking at that "darkside". I spoke to George this morning regarding Leicester and mentioned a few names when he told me. The trouble is I can't get my fekkin head around this new site - anyway George posted me a link to this thread...so here I am.

Anyway glad to hear you enjoyed the cruise. Have you booked the next hols? ... as they say "life is for living". That's all I do, book hols and work sometimes.

I'll see you in Leicester but if the beer is a bit too much for you then I'll have your pint.

[would have poste a smiley but can't find them. This bloody new site]

Best wishes
Gary

Edited by member 29 May 2014 at 12:07  | Reason: Not specified

User
Posted 30 May 2014 at 23:17
Hi Gary,

Welcome to the dark side I am also finding it hard to navigate but I intend to persevere, as for the beers I have to say I'm no longer a good drinking partner.

Not been the best of days today, having read two great posts from Bri & Bazza both with good news I am in a lot of pain. Mainly around my upper left back/rib cage extending round to the left chest. This is the worse I have been for sometime and a double dose of good old morphine hasn't for once done the trick. Some of the nodules in that area have become quite pronounced and can easily be felt. All a little worrying but hopefully the pain will have eased by tomorrow.

Sorry all, not my usual positive post but sometimes you are allowed to feel not so good.

Ah well,

Life is for living

Barry (alias Barrington )

User
Posted 30 May 2014 at 23:24
Wishing you well Barry and hoping the morphine eventually kicks in and your spirits raise in the next day or two.

Bazza (Barry)

User
Posted 31 May 2014 at 00:10
TG, so sorry to read that you are in discomfort. You won't want to think about this I suppose but can the Macmillan nurse jiggle the meds around a bit more - you are a stubborn old mule and might be tempted to try to 'manage' rather than allow yourself to be as comfortable as possible.

Thinking about you x

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

User
Posted 31 May 2014 at 00:31

Your posts are always positive. I hope you can get the relief you need quickly to quell your discomfort.

 

Paul

Stay Calm And Carry On.
User
Posted 31 May 2014 at 01:28
Hi Lyn & Co,

I have an excellent pain control nurse from the Dorset equivalent of MacMillan, The Weldmar Trust, and I do actually listen to her. I am currently on twice daily 40mg of Zomorph and normally 5mg of Oramorph every 4 hours. I have upped that to every 2 hours for the moment. If still in pain tomorrow will up the Zomorph ( that is a continuous feed over 12 hours).

Strangely this afternoon Karen and I went to the local Weldmar Hospice for a guided tour, organised by my pain nurse. It is a lovely facility in extensive gardens a place that is so tranquil. You can go there for a couple of days if not too good for just a rest away from a normal hospital. Karen was just saying perhaps going there might be sooner than we thought....as she failed in pushing me overboard this might give her a good nights sleep.

Talking of which I've just moved into the spare bedroom so it's time to let the morphine kick in and get some shut eye😴

Life is for living

Barry ( alias Barrington )

User
Posted 31 May 2014 at 06:41
Sincerely hope you're feeling better today TG and that you got some sleep. Best Wishes. Sandra
We can't control the winds - but we can adjust our sails
User
Posted 31 May 2014 at 07:48

I hope that the Weldmar Hospice is in no need of plastic grass,seriously though hope the pain management is ok and a good sleep was had.

User
Posted 31 May 2014 at 07:53
Cheers Sandra,

The pain is a bit more under control but is still there in the background. Unlikely to go away over the weekend so I will contact my pain control nurse on Monday to see if there's anything else in the market (I bet that was surprised you Lyn) as I don't want to be taking morphine every 2 hours.

I note Sandra from your posting under " Bazza" that your OH isn't too good at the moment either so hope things improve. You and so many others are right, it is the likes of yourself and our partners who, in the majority of cases, seem to bear the burden of worrying far more than we do. Having run a Support Group for a while it is, more often than not, the ladies who are the driving force behind any participation by us men including going to the GP in the 1st place. I know that without the support of my wife things would be so much harder and I'm sure your OH feels exactly the same.

My very best wishes,

Life is for living

Barry (alias Barrington )

User
Posted 31 May 2014 at 09:21

I didn't men to mislead you TG, or anyone else. OH hasn't had his seed brachytherapy yet, that's on Tuesday. He isn't actually suffering (yet!) and assumes he won't. My real concern is that the wakeup call will be a rude awakening. He's normally a cheerful soul and unless I drop broad hints of the possibility of how he will feel he makes no enquiries.
Ah well, ,maybe he's right.
Another little cliché. Don't trouble trouble until trouble troubles you.
He may sail through the whole thing and I will have fretted for nothing.
Although I haven't a clue who else would have organised the incontinence pads and pants (just in case) ! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Edited by member 31 May 2014 at 09:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 31 May 2014 at 10:52
Hi Johsan,

I have had your private message but don't know how the reply works? Still not got to grips with the site.

The pants you refer to are the ones, about 12 in a pack and really work.

Hopefully it will all be plain sailing but you are right to have a pack at hand just in case. They do get a bit uncomfortable after a while when sitting but what the heck.

Best of luck for Tuesday

Life is for living

Barry (alias Barrington )

PS I have tried to reply to your private message

User
Posted 31 May 2014 at 11:13
Ditto Lyns and others advice. Please make sure you get the support when YOU need it.

It's quite permissible to think of yourself now and again and perhaps you need to do that now

See you in Leicester old lad

Bri

User
Posted 31 May 2014 at 11:15

Hi Barry,

Sorry to hear your pain is playing you up . I know you don't want to make a fuss but sometimes it is better to press the buzzer to early. No one should be in pain in this day and age. If you need it shout for it even if it is before Monday. I have to agree with Lyn you are a stubborn old Mule, OK not perhaps old. That said this is one of the many reasons why we all love you.

I hope today is easier for you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 May 2014 at 12:37
Thanks Barry. Got the private message so you've sussed it out OK.
We can't control the winds - but we can adjust our sails
User
Posted 31 May 2014 at 17:04
Hi all,

I have tried to post this message under "New Topics ...Social" but haven't seen it appear so thought I would add it here......

Hi all,

Within the new site I think this is a good as place as any to wish JANET (jIbatty) a very Happy Birthday. Very many members of this site who know Janet will recognise the wonderful support she quietly gives to those of us who suffer from this insidious disease.

For those of you who don't know Janice, she sadly lost her husband, Mike, to PCa 4 years ago. She was magnificent then but over the past 4 years she has travelled throughout the country and abroad at her own expense giving her support and help to those in need. She attends all of our gatherings and will of course be at Leicester.

We who know her have come to love her and if ever a lady deserves to have a very Happy Birthday it is OUR JANET

If tonight you are having a drink please raise your glass to a very special lady and wish her a Happy Birthday πŸΈπŸŽ‰

Life is for living

Barry (alias Barrington )

User
Posted 31 May 2014 at 17:06
Hi dad

Hope the pain relief cuts in soon, the cricket probably isn't helping either.

Of to wembley now to see the boxing. Hope Froch gets walloped tonight πŸ‘ŠπŸ‘Š

Take care

No 1 son. James.

See you soon.

User
Posted 31 May 2014 at 18:28

Originally Posted by: Online Community Member
Hi all,
I have tried to post this message under "New Topics ...Social" but haven't seen it appear so thought I would add it here......

Hi all,
Within the new site I think this is a good as place as any to wish JANET (jIbatty) a very Happy Birthday. Very many members of this site who know Janet will recognise the wonderful support she quietly gives to those of us who suffer from this insidious disease.
For those of you who don't know Janice, she sadly lost her husband, Mike, to PCa 4 years ago. She was magnificent then but over the past 4 years she has travelled throughout the country and abroad at her own expense giving her support and help to those in need. She attends all of our gatherings and will of course be at Leicester.
We who know her have come to love her and if ever a lady deserves to have a very Happy Birthday it is OUR JANET
If tonight you are having a drink please raise your glass to a very special lady and wish her a Happy Birthday πŸΈπŸŽ‰
Life is for living
Barry (alias Barrington )

 

Thanks for the heads up Barry.

Being new here I do not know Janet but if you are viewing this Janet VERY HAPPY BIRTHDAY to you. You are obviously held in great affection by the members.

Have just poured out a glass of home-made Orange and grape wine so here's to a Happy Birthday to Janet and anyone else who's a year older now or soon. Best Wishes all.

We can't control the winds - but we can adjust our sails
User
Posted 31 May 2014 at 19:09
Judging from facebook, Janet is having a lovely birthday with good wishes from her many friends. Janet, I think you know how much I admire you but just in case ... Mike would be so very proud of you; you are one amazing lady and deserve to have a wonderful day xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 May 2014 at 20:43

I raise my glass, to Janet and all the carers. Cheers!

User
Posted 31 May 2014 at 21:51

Happy Birthday Janet

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 May 2014 at 22:36
Barry, you have embarrassed me, you are so kind. Firstly do make sure you get that pain sorted. I think the key is to keep on top of it, but the nurses are the experts, and have all the latest solutions, I am so pleased you are involving them rather than trying to struggle on. In this day and age there is no need for pain but it can catch us out as it changes and the solution needs to change.

I had a lovely day out today with my son and daughter in law, got dropped off in time for Greg to watch the boxing so happily munching celery (no idea why!) and catching up on my iPad, my constant companion. Certainly not my previous usual birthday evening but perfectly ok, and my head should be clear in the morning!

My life has changed so much over the last few years and I have met such wonderful people, who have become part of my life. I am sorry I cannot keep up with everyone on here as much as I would like, work and just life seems to take up so much time. For Mike there wasn't much time once he was diagnosed and treatments that are common-place now weren't available then. It is so rewarding to see so many men doing well, and also the support given to those going through a tougher time. The strength and compassion shown on this site is truly amazing and I am so proud to call so many of you my friends. And to meet up with so many of you in Leicester is truly the icing on the cake. I was so nervous the first year I went wondering what I was doing but came away feeling I was leaving old friends, old in that I had known them so long, not their ages!

Thank you all for your good wishes and kind comments, much love Janet, xxx

User
Posted 31 May 2014 at 22:41
Janet

As a newbie, it is clear how respected you are on this site. I'm gladyou had a good day.

I have often read about Leicester. I have searched to find out about this event, but found nothing. Could someone please let me know exactly what it is all about, as I would like to attend if possible.

Thanks

Paul

Stay Calm And Carry On.
User
Posted 01 Jun 2014 at 00:35
Hi Paul,

Strictly speaking, the annual get together at Leicester is a B2PCa (bo11ox to prostate cancer) event but since many members of B2PCa are also on here, it feels like one and the same. George organises us all, details are posted in the events section of this forum, some of us stay for one, two or three nights while others attend just for the day - the actual event is an afternoon with a speaker (this year, Si's onco) and a buffet.

Usually a complete sell out months in advance, 80 people most of whom have bladder problems drinking .... carnage but great fun and as Janet says, strong friendships are inevitably formed. I don't know whether there are any spaces for this year but you could message George to ask?

Having said it is an annual event, it happens twice! London, usually the first week of December. Watch the events thread for that one too.

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

User
Posted 01 Jun 2014 at 01:23
Thanks, Lyn. Janet also sent me a PM, detailing everything.
Stay Calm And Carry On.
User
Posted 02 Jun 2014 at 12:25
Hi all,

Well despite being a stubborn old fool I did call in the pain nurse (OK I admit it...it was Karen). I have more pain around the rib cage but the pain in my bum has got worse and is constantly there despite pain medication. I have a feeling of always needing to open my bowels especially when standing / walking and when having a wee. I am also bleeding when going. This is limiting my quality of life in fact it's a right pain in the ar*e.

The immediate action is upping the Zomorph to 50mg but it is thought that there might now be a blockage caused through spread of PCa tumours in the bowel / groin area.

I have a scan on Wednesday with Onco appointment the following Wednesday 11th June. Depending on that the next step might well be direct RT on the troublesome area in the hope it will reduce the size of the tumour. Quite how that reacts with the fact I have had RT for PCa is for me an unknown and something I will have to question if that becomes likely. The trouble is at the moment we are chasing the pain as it varies in location but I think they need to prioritise the pain in the bum as that is causing me real discomfort whilst for now I can cope with the rib cage aches and pain.

Above all that is the need and desire to be able to make the trip from Weymouth to Leicester for the madcap gig. We are stopping off for a couple of nights on the way back (at the Runnymead on the Thames Hotel in Windsor to celebrate our Silver Wedding Anniversary) but might have to look at stopping off somewhere on the way up.....anyone know of a good pub with accommodation just off the M25 Heathrow direction?

In the meantime, despite the cr*p,

Life is for living

Barry (alias Barrington )

User
Posted 02 Jun 2014 at 19:35

Hi Barry,

Have you moved your thread? I have had a heck of a time trying to find you today. I feel like I have been up the M25 myself. I couldn't find you on the dark side so I went back to your original thread and tracked you down through that.

Sorry to hear the pain in the bum is persisting but I am glad that Karen pressed the panic button for you. You men what are you like.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif.

I will be thinking of you on Wed. We have Onco and latest PSA results on Thur I will post on my own thread when we have news if I can find ithttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif.

I hope the pain sorts out soon.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jun 2014 at 20:33
I sincerely hope that the pain int the ar*e is under control by now, frankly if RT. can help then I'd go for it. I guess the medics will take into account all the facts nd make the right decision.

You are another one that smiles through the difficult times, though it isn't expected - well what I really mean is that you have the ability to make us smile through your difficult times. Today of all days, I thank you for that.

Much love

Allison xxxx

 
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