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15 years on (continued)

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User
Posted 12 Jun 2014 at 13:09

Hi Barry,


So the fight goes on, and anything that might give you extra time (Enzalutamide) is a good thing. The hospice sounds very peaceful and calming I would pack the hammock . You never know.


I am sure this will be the place to get the pain meds sorted and then you can enjoy the rest of the summer , long lazy picnics with a few glasses of beer.


Your Karen sounds like a very caring person , I wish I could say something profound and meaningful but words seem to have escaped me, so for know all I can say is .


We love you TG.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2014 at 15:04
So, Barry..the fight goes on.

It's great that your onco rang you and told you all the details. It proves he cares and is still in your corner.

The hospice sounds a good idea to get your pain sorted, and I must add, my own oncologist (another good guy) is a big supporter of Enzalutamide.

He gave a talk on it a PCUK event at Sunderland AFC just two months ago.

Good Luck with everything.


George
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B2PCa
User
Posted 12 Jun 2014 at 15:35
Hi Barry

I never cease to be amazed by how you deal with everything which this cursed disease is throwing at you almost on a daily basis. Dealing with ongoing serious problems as you do while keeping your sense of humour looks to be second nature for you.

Pain control now is paramount and we must hope that that a short time spent in the hospice over the week end is the way to do this.

Very best wishes to you and Karen.

Alan
User
Posted 12 Jun 2014 at 18:42
I am sure Weldmar will be just what you need, Barry, to get you ready for Leicester, looking forward to seeing you and Karen then, love Janet
User
Posted 12 Jun 2014 at 20:04
I think your oncologist seems like he know you well and knows it is worth trying Enzalutimide because of your pragmatic but determined character. I am so relieved that he hasn't given up. I'm also glad to know you have decided to trust in the local hospice, if it's anything like ours, they are truly wonderful.

I also wish I had something profound to say, but I sincerely hope that Monday brings good news of pain relief at the very least.

Good luck my friend and big hugs to Karen xxxx
User
Posted 12 Jun 2014 at 20:21
Sounds like you've got a good oncol there TG. I think the fact he is prescribingEnzalutamide is so positive. Regardless of our relationships with our treating medical teams they are very cautious with budgets, particularly in today's climate. I think his decision bodes well :). Make sure you are out of the hospice by Wednesday, I want to give you some stick at Leicester

Bri ;-)
User
Posted 12 Jun 2014 at 20:59

Barry,


I salute your stoicism

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 £25,000 x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jun 2014 at 09:18
Hi TG

You never cease to amaze me, you are an inspiration to us all, never give up, the war is not over and if anyone can defeat the odds it is you.

Keep fighting

Roy
User
Posted 13 Jun 2014 at 12:49
Hi Barry ,Not wanting to intrude on your posts and being a relative novice to this site ( diagnose PC feb ,psa 27, gleason 3/4 and op 10 this month) have been catching up with some of the threads on here ,in particular yours.I would just like to say how Impressed I am with the way you handle all the crap that comes your way and how you still maintain a sense of humour.I would just like to wish you all the very best going forward and hope that all news is good news ,Good luck. Chris

To Infinity and Beyond
User
Posted 13 Jun 2014 at 13:01

Hi Barry I too am relatively new to this community and  follow your journey on here I think the way you deal with all that  this disease throws at you is amazing and your are an inspiration to me ll the best going forward


Frank

User
Posted 13 Jun 2014 at 20:56
Hi all,
Firstly thank you for the kind messages, but believe me I am no hero although if my story can give some inspiration to others all to the good. I realised years ago that one has to live life to the full whilst one can. In my younger early days in the Army I was stabbed ( in a drunken fight) resulting in a collapsed lung, have been shot at on a couple of occasions, was in the "safe house" in Beruit which was bombed at 4am and had to be choppered out and of course did many stupid things that could easily have resulted in serious injury or worse ( but then didn't we all). I learnt that there are things over which you have no control whereas I can have some input of how and what I can do in the fight with this insidious disease.

I am now safely installed in the Weldmar Hospice which equates to a 5* hotel. Salmon for lunch presented as per Masterchef. The grounds are beautiful with fountains and waterfalls, Karen and our dog Poppy have spent the afternoon/evening sitting out in the garden enjoying a cream tea and home grown strawberries. I can't speak highly enough of all the staff and two doctors spent quite some time with me discussing the pain issues.

The main interest has been the arrival of the Enzalutamide which I think came by helicopter under armed guard it arrived late this afternoon and everybody is frantically reading up on it. This appears to be the first time anybody in this neck of the woods has had it and I really do thank my Onco for getting it. It comes in packs of four all of which have to be taken at once....160mg. The course is supposed to last 8 months at a cost of over 25 grand. Strange really as it suggests that the average life span after starting it is 7 months (do you get a months money back?) Being a fully paid up taxpayer I intend to get the full 8 months worth by which time there will be yet another wonder drug available.

The pain issue is hopefully being resolved with another two drugs (names I forget) being given on top of the previous ones (Zomorph , Oramorph , etc) I don't expect things to work wonders overnight but any improvement to the extent that I can take Poppy out for a short walk is what I am after.
So there you have it, I have just taken 14 tablets, will have a cup of Horlicks in a few minutes and another two tablets by which time I think I will be close to being in a drug induced coma and should get a good nights kip.
Wishing you all the very best, remain positive, don't look back on the "what ifs" think of the future because....
Life is for living
Barry (alias Barrington )
User
Posted 13 Jun 2014 at 21:01
Hi TG

Just read this hope it is of interest.

http://www.practiceupdate.com/journalscan/10235

Roy
User
Posted 13 Jun 2014 at 21:52

Originally Posted by: Online Community Member
Hi all,

The main interest has been the arrival of the Enzalutamide which I think came by helicopter under armed guard it arrived late this afternoon and everybody is frantically reading up on it. This appears to be the first time anybody in this neck of the woods has had it and I really do thank my Onco for getting it. It comes in packs of four all of which have to be taken at once....160mg. The course is supposed to last 8 months at a cost of over 25 grand. Strange really as it suggests that the average life span after starting it is 7 months (do you get a months money back?) Being a fully paid up taxpayer I intend to get the full 8 months worth by which time there will be yet another wonder drug available.


Wishing you all the very best, remain positive, don't look back on the "what ifs" think of the future because....
Life is for living
Barry (alias Barrington )


 


I've said it before and I hope I'll have plenty of opportunity's to say in the future,I really admire your positivity.


Best wishes.


 

User
Posted 14 Jun 2014 at 01:53
Glad you are getting 8 months worth - I am hoping to kip at your house in September whilst working nearby xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2014 at 17:04
Hi fellow punters,
Not been the best of days, woke this morning in a lot of pain in the upper back spreading across my chest, worse than it has been for some time. I am in the right place though and had 3 doctors looking at me in a very short time. Both Oramorph and Zomorph is being increased together with another pain medication. Having a chest X-Ray tomorrow but don't think that will show up much. They explained that the CT Scan on the 4th showed an increase in the size of the tumours in the lungs, liver and lymph glands and the general progression of this insidious disease throughout. Obviously a big disappointment especially on the pain side as over the weekend I was feeling a bit better. Of course the Enzalutamide might help in containing the growth of the tumours but the pain control will be down to other drugs. They want to keep me for a further week or so but I will be leaving on Wednesday ready to start as long as it takes to get to Leicester by Saturday. We aim to stop over at my sons on the Thursday and Friday but his place is a fair way up so we have the option of stopping overnight on the way to him as well. My son will then drive us to the gig on the Mill on Saturday and then after the evening meal when he and his wife will be joining us in what undoubtedly will be a messy but full of laughter time before driving us back to their home to stay there for a couple of days before we go to Windsor for two nights.
I am determined to meet up with so many friends and indeed new faces, my sign off phrase " life is for living" can never be more apt than now. I am a pretty realistic bloke and know that in all likely hood this will be my last chance to meet up en masse with so many of you, this is important to me and although I will leave with some sadness the overriding feeling will be one of enjoyment in meeting once more a group of truly wonderful people and will leave me with so many happy memories.
Apologies if this seems a little bit maudlin and believe me I intend to get the full 8 months that a course of Enzalutamide is designed for....as after all.......
Life is for living
Barry ( alias Barrington )
User
Posted 16 Jun 2014 at 18:44
Looking forward to meeting you old lad. I hope they get the pain under control sharpish though, we can't let something like that spoil your day.
We've got lots to do before our hol so only there for the afternoon. Having said that it sounds like it will be enough for me being a bit of a lightweight :)

Take care
Bri
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 17 Jun 2014 at 21:47
Barry
Hoping things have improved today and you are getting ready for a weekend of family, fun and frolics xxxx
User
Posted 17 Jun 2014 at 23:39
Once again thank you all for your kind wishes.
Today I was not only taken by surprise but honoured beyond any expectations. Those of you who have read my story ( you sad people know who you are ) will know that 4 years ago I formed a group called " The South Dorset Prostate Cancer Support Group". This title has always been a bone of contention for me, although it described exactly who we are it was far too long. Following the diagnosis in March that I was terminal I decided that I could no longer give my time to running the group but needed to give my time to my family and in particular to my wonderful wife Karen. Selfish perhaps but in all fairness to any group it needs a leader who can at times give 100% thought to a fellow member's problems etc. and that would no longer have been the case. I handed over to Paul who had been my treasurer and general dogsbody. Paul has since held a successful meeting and conducted another free PSA session which tested another 80 odd men ( they weren't all odd ).
Paul though had the same thoughts as myself though regarding the name of what has now become a very well established group. Rather than just thinking about it Paul came up with a name that was voted in unanimously and the group is now called......"THE NEW MAN SUPPORT GROUP"
For those of you not in the know my surname is Newman.
In the next newsletter Paul will explain the thinking behind this title, the fact that we all want to be a new man following treatment and the link to myself.
So there you are, I may not be very well, more of that tomorrow but right now I am a very proud man.
Life is for living
Barry (alias Barrington )
User
Posted 18 Jun 2014 at 00:21
Hi TG (dad)

Quite right and the newman family are proud of what you have achieved.

Number 1 son. James
User
Posted 18 Jun 2014 at 06:42
A fitting tribute indeed. You have every right to be proud mate, actually had a little lump in my throat when I read that.
Hope you are feeling well enough to start your journey 'up North' Let the bun fight commence :)
See you Saturday

Bri
User
Posted 18 Jun 2014 at 08:43
A very fitting tribute for an incredibly special man
See you Saturday TG
Xxx Mo
User
Posted 18 Jun 2014 at 09:31
Wow, that's a lovely story, Barry, love to you both, Janet
User
Posted 18 Jun 2014 at 11:33
Barry, that is a wonderful tribute.

The NEW MAN SUPPORT GROUP.

As Janet says...WOW!

I always said you were immortal me old mate. : )


See you Saturday,


George, Lynn & Katrina
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B2PCa
User
Posted 18 Jun 2014 at 14:43

Hi Barry,


I have to agree with all the others , a fitting tribute to a very special man. Of course they could have fitted it with your name on here and called it Top Man, then you might have got some vouchers from a well known men's clothing shop.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Have a lovely time at the weekend. I will be thinking of you all.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Jun 2014 at 15:49
Hi Barry

This shows, if that was ever needed, how much you are regarded by the members of your support group for your ongoing efforts over the years to get the message across for men to have a PSA test. What else can I say - that is great news!

Alan
User
Posted 18 Jun 2014 at 19:12
What a great honour for you Barry, truly deserved as others have said. Hope the pain relief is working. See you soon!
User
Posted 18 Jun 2014 at 19:34

Well Barry, 


It is no more than you deserve.


..."THE NEW MAN SUPPORT GROUP"http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User
Posted 18 Jun 2014 at 19:54
Back home after a wonderfully peaceful stay at the Hospice, a truly lovely and caring place. It did both myself and Karen the world of good. For me, getting control of my pain, for Karen a few days of respite.
Tomorrow we start out on our journey to Leicester a journey that yesterday was seriously in doubt. I was in a great deal of pain taking 20mg of Oramorph every hour and by the end of the day I was quite spaced out. Today however what a change, I had 20mg at 0910 this morning and haven't had the need for anymore, time now 1930. That really is astonishing and I think they have now got the balance right.....50mg of Zoramorph twice a day and 600mg of Gabapentin 3 times a day with the backup of Oramorph as and when needed.
One of the members of my old support group came round to see me this morning and he described how there was a general discussion about the change of name which originated from the floor rather than the chairman and that all and sundry thought it was an excellent idea not just honouring me but as a good name for what we all want and a very good play on words, whatever I am immensely proud.
As an aside it reminds me of when I first joined the Gurkhas and on meeting my men and introducing myself they kept saying " Yes we know you are the New Man but what is your name?".......that went on for about 10 minutes before they finally understood that my name was Newman.
Best of luck everybody, thanks once more for the kind words....next stop Son No1s house.
Life is for living
Barry ( alias Barrington )
User
Posted 18 Jun 2014 at 20:03
Safe journey, Barry, great you have the pain sorted, the hospices really can get it so right, looking forward to seeing you both on Saturday, love Janet
User
Posted 19 Jun 2014 at 09:01
Hi

See you later, take it easy. I can collect if needed.

number 1 son

James
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 19 Jun 2014 at 19:52
Cheers Lyn,
I am sure that you emailed me a few days ago about staying with us whilst you are working down this way, I admit I might have been in a drug induced state and you didn't send it, but just in case it was something I dreamt up you'd better be careful what you say.....downstairs loo indeed👿 now the posh one upstairs🛀 I can accept.
Well we made it to No1 son's house just fine with only one stop on the way. Karen did a grand job whilst I just lay spread eagled in the back. Again pain fairly much under control with Oramorph taken at 6am, 1pm and just now 7.30pm. A lazy day tomorrow before heading off for Leicester, not quite sure who is driving or even what car we are taking but what the hell we will be there and that's all that matters.
By the way despite the metastatic spread to all parts ( some of which I have never heard of ) my PSA continues to spiral downwards and is now 0.2 .....only Lyn knows why👸
Life is for living
Barry ( alias Barrington )
User
Posted 19 Jun 2014 at 22:06

Hi Barry,


 


You've really cheered up the lot of us.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


Those are very encouraging posts from you, and I gotta tell you...we can't wait to see you back in your 'play pen'...The Mill.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


 


See you very very soon,


 


 


George, Lynn & Katrina


 


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B2PCa
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 20 Jun 2014 at 05:13
Lyn are you calling Janet or even Jane Plant strange women😶 that could lead to a cat fight😼
Life is for living
Barry (alias Barrington )
User
Posted 20 Jun 2014 at 08:31
TG just the tonic I needed, karen and i will be heading to leicester this afternoon and we are both looking forward to meeting you at last.
Xxx
Mo
User
Posted 20 Jun 2014 at 08:54
Lyn, I would be the first to call myself a strange woman, so hope you were referring to me!
User
Posted 20 Jun 2014 at 18:22

Barry it is such great news that the pain is under control, was you referring to Lyn http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Today's ALP 40 so the 376 pints are mine


See you tomorrow


 


Si x


 

Don't deny the diagnosis; try to defy the verdict
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 21 Jun 2014 at 20:57

I hope you are all having a brilliant time I have sent hugs via Mo, so watch the ribs Barry. You deserve all the best wishes I hope you are having a brilliant time. I wish I could have been there, but love to all.  Raise a glass for me.  Watch Si he drinks like a fish.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif  Also watch Bri he is after your sarnies.


I am looking forward to all of the Gossip. Yes a big thank you to George another huge man that we all owe  a debt to.


If there is any steak and chips left over can some one do me doggy bag.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


BFN


Julie X


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Jun 2014 at 22:06
So lovely to see you and Karen, Barry, love Janet, xx
User
Posted 21 Jun 2014 at 22:16
Barry, it was good to meet you today, sorry we didn't get more time to chat.
I know everyone was so pleased to see you there.
You really do inspire others including myself

I hope you didn't find it all to tiring and that you will feel better after a rest

Speak soon
Bri
User
Posted 22 Jun 2014 at 02:39
Julie, the gloves are off! You told Mo to make sure no-one introduced me to no1 son!!! All bets are off, my dear, although he didn't bring the porsche anyway :-(

What did happen today was that Ness had her first ever ride on a Harley and was left speechless and Nette won a holiday to Malaysia!

TG, great to see you but I wasn't too sure about the head scarf - there may have been a little too much of the union flag considering what an appalling sporting week we have had xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2014 at 09:11
I can't express enough how wonderful this group of friends actually is. Topgun, it was truly fantastic to see you, Union Jack waistcoat and headgear suited you very well, as Lyn says, bad timing re sport but who cares about that when you have mates like these.

The "do" was the best yet for me, a fantastic speaker and the food was blooming great Julie, I even ate vegan stuff and am still here to tell the tale!

Big love Topgun xxxx
User
Posted 22 Jun 2014 at 10:14
Who was the lovely guy who donated the fantastic raffle prize?

Jamie was brilliant and very honest I thought with his answers.

A lovely bunch of people and a success by George

Bri
User
Posted 22 Jun 2014 at 11:47
Hi all,
As promised a few more words on a wonderful hot summers day. At No1 sons house, my daughter and her partner plus my two grand children will be arriving shortly for a family BBQ. The grand children went up on a hot air balloon yesterday so no doubt they will be the main topic of conversation. I bought James a set of Boules and engraved a plate on it saying:-
To James & Jo
Have fun in the sun
Playing with James' Boules
From Barry & Karen
23 May 2014

That was the day they moved into their new house, and you can take the playing with James' Boules how you want!
Back to yesterday, Karen and I were overwhelmed by the kindness you all showed, I have never had so many cuddles and kisses in my whole life....and that was just from the men.
I hope that I am worthy of the kind words George said and those said by so many of you there and on here. I know that things are not too clever at the moment but for all of you remember that I have lived the life for 15 and a half years since being diagnosed. If my consultant had said all those years ago, we can give you 15 years I'd have snatched his hand off.
I am so proud to be among so many wonderful friends, the bravery of the ladies who have lost their loved ones over the years truly amazes me, for them to show so much kindness and support is so humbling. The likes of Allister, Paul (Yorkhall) John and co who have metastasis to the bones yet continue to live their lives enjoying themselves and looking forward to the future gives so much encouragement to those of you beginning your journey and may I add also to those currently on HT etc.
George thank you for bringing together all these marvellous people and as I said before....God bless you all,
Life is for living
Barry (alias Barrington )
PS My apologies to all those I failed to say goodbye to, things were getting a little emotional and I felt it best to leave when I did. You all know that my thoughts are with you all.

Edited by member 22 Jun 2014 at 18:01  | Reason: Not specified

User
Posted 22 Jun 2014 at 12:57

Well we have just got back from our first Leicester meet, what a great weekend, well done George.


 


Barry it really was great meeting you and Karen for the first time, my friend you really are a diamond geezer http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


 


Si & Ness xx


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Jun 2014 at 19:37
Lovely weekend albeit emotional at times. Barry and Karen it was wonderful to meet both of you along with No1 son James.
You looked fabulous in your patriotic gear and it definitely was a year for hugging and kissing. I managed to get one for me and Julie with you and Karen and a smaller less sloppy one with James but i am claiming that one all for me.
Ness on the Harley was very funny but the Malaysia /Australia raffle donation was truly splendid and won by a lovely couple.
Have a truly awesome Wedding anniversary and enjoy your mini cruise too xxxxx
Mo
Please let karen know I finally got into facebook and have confirmed her friend request.
 
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