15 years on (continued)

User

Posted 03 Jun 2014 at 01:02

TG,
putting it bluntly, whatever the research is about maximum dose of RT, I don't think you are going to be around in 10 or 15 years when the damage from an extra zapping starts to make itself known.

I just want you to be as pain free as possible, to not have unpleasant side effects and to be at M-o-t-s to buy me a cup of tea. Tell them to do whatever might help - sod the long-term side effects x

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

User

Posted 03 Jun 2014 at 09:11

Hope you got something sorted yesterday, TG.

Stay Calm And Carry On.

User

Posted 03 Jun 2014 at 10:24

Hi Lyn ,
Totally agree but will have to wait until I see Onco on the 11th to discuss tomorrow's scan. If it shows that it's a tumour causing the pain I will put forward the idea of RT if he doesn't mention it first. It will probably be on my notes anyway following yesterday's visit from pain nurse.
As for Leicester it looks like we might be sharing a pot of tea and a couple of jam doughnuts☕️🍣 as beer is off the menu for now. Talk about quality of life, Barrington at the Leicester gig without a pint in hand......Switzerland here I come.
Sixfoot I have upped the Zomorph but it takes a day or so for it to kick in.
Life is for living
Barry (alias Barrington )

User

Posted 03 Jun 2014 at 13:27

TG this may not be much help but Mick had the same kind of pain in his bum, just how you described it. Finally turned out to be a faeces that had impacted in his rectum, stuff was able to pass round it so he was never actually constipated ...not necessarily going to cheer you up when I say a good old fashioned enema can do the job.

xxx

User

Posted 03 Jun 2014 at 14:13

Hi Barry,

Further R/T will depend on the number of Gy you had to the pelvic region. When you had the initial treatment it's possible you only had say 64Gy which was a typical dose at that time. It's since, in many cases , been upped to around 72-74 Gy. Even higher in a few cases but often with added toxicity.

The computer will look at your area that was treated ( can be prostate only, or prostate + surrounds), and say if you are likely to tolerate further R/T.

The concern is not any long-term effects but that too much R/T in one area of the body can burn holes in tissue despite the time lapse since original treatment. It has happened on rare occasions & obviously the radiologist should look carefully at benefit to you or not.

Suspect there might well be a few Gy in reserve for you. Likely dependent on exact location of the problem as well. So well worth checking yourself as to the original dosage.

Keeping bowels loose may or may not be a problem for you at this time . But as Mo suggests, certainly anything too firm can cause unwanted pressure.

User

Posted 03 Jun 2014 at 15:26

Hi Rob,
Thank you for clarifying the situation and pointing out something I was not aware of. 64GY seems to ring a bell but will be able to confirm when I see my oncologist next week. Amazingly he is the same one who 1st handled my case and then throughout the past 15 plus years and has almost become a friend.

Mo, how kind of you to come along to offer your help just one day after your so sad news. Once again you have shown your love and caring to your fellow man, thank you and I will pass on your thoughts to my Onco next week. Please take care of yourself, mine and Karen's prayers and thoughts are with you and your family.
Barry (alias Barrington )

User

Posted 03 Jun 2014 at 23:55

If you EVER make a swiss comment like that again Barry, I will be giving you an enema - and not with pleasant luke-warm water.

Two teas it is, my friend x

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

User

Posted 04 Jun 2014 at 00:43

Hi Barry
sorry to hear about the butt pain as Eric would say he can cope with pelvic grion and the rib pain obviously with medication but that dam butt pain No.Eric has had RT twice and I am sorry to say that it did not work for him but it might help you everything crossed.When Eric was diagnosed that was the pain he has always complained about.
Now he has a deep indent on his butt showed Consultant she said I have never seen anything like this before you can pull your pants up now????? Eric saw GP said it looked as if there was no fat or muscel in this area still dont know whats going on except the pain.
Hope you have better luck than Eric is having with this pain in the a***
Carol

User

Posted 07 Jun 2014 at 08:18

Hi all,
Can there be a worse week? We lost one of our bravest and happiest members, Mick, on Monday, then received the news of the passing of a true gent that many of us knew, Joe, yesterday.
At a personal level on Thursday my Grand-children went to the funeral of their other Grand-dad. Earlier in the week my 1st cousin called round, his Grand-son aged 14 months died, they think of an epileptic fit.
The father of my daughter's partner is seriously ill with oesophagus cancer which has spread to his liver and is terminal. Now yesterday we find that my 1st wife has aggressive leukaemia and her options and time left are very limited. She is the mother of my two children. Jacqui my daughter is already bearing the brunt of her partners father being so ill and now she has her Mum's diagnosis to contend with on top of mine. My son, James, is dashing backwards and forwards trying to see to everyone's needs plus trying to tie up a very important business deal....oh and moved house in late May.....apparently he has high blood pressure!
For myself the pain in my bum has got worse and I can't get around much or stand for too long but in the scheme of things I'm in a good place and following my scan on Wednesday will be seeing my Onco this coming Wednesday when hopefully he will be able to shine some light on things.....he will have to get his torch out and have a good look round.
So there you have it and as always things could get worse which is why it is important to say that...
Life is for living.....(make the most of it whilst you can)
Barry (alias Barrington)
PS Karen has come up with a conundrum .......supposing both I and my 1st wife die and go to heaven ( no laughter in the stalls please) will we be together and if so what happens when Karen gets up there, will she have to share me? To make the situation even more complicated my 2nd wife will also be there as will my 1st wife's 2nd husband. This is a semi- serious question as Karen does believe that there is some form of after life, whatever that maybe.......a further PS ...she is receiving counselling at this present time!

Edited by member 07 Jun 2014 at 08:44 | Reason: Not specified

User

Posted 07 Jun 2014 at 09:17

Hi Barry
So sorry to hear these awful things all happening together, not exactly the same but we went through a period like this about ten years ago and to this day I don't know how we got through it, but we did. I feel for your children, the only plus is that they are adults and can help and this will sustain them in the time ahead.

I hope the Onco can do something to help with the pain, are you still able to use your scooter?

I have also pondered on the question that Karen raises, but have no answers, my assumption is that heaven is all about love and it'll be everyone happy to be with everyone. I certainly hope so.

So looking forward to seeing you again, not long now.

Lots of love
Allison

User

Posted 07 Jun 2014 at 09:25

TG

I have tried to write something once and got nowhere. Keep strong. Keep believing, and when the 4 of you do finally get together, if there is a God, I am sure he/she will ensure there are no problems. But that ain't going to be for some time yet!

Paul

Stay Calm And Carry On.

User

Posted 07 Jun 2014 at 10:24

My Goodness Barry,

What a lot your family are dealing with at the moment, I am not surprised that Jame's has high blood pressure. Sometimes in life we feel that things are so bad we will never get through it but as Allison says some how we do, the human spirit is amazing .

I am really hoping the pain can be sorted for you and very quickly, of course I will be thinking of you on Wed.

As for your last ps, well what a conundrum that is for all of us with mixed up families, my take is it will either be one big happy party or handbags and pistols at dawn.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Jun 2014 at 11:39

TG what a terrible time you are having, like Allison Mick and I went through a terrible time losing both sets of parents and his very much loved Nan in close succession. It takes time but you do heal.

I am also concerned about your pain in the bottom so I am hoping that your Onco can come up with a valid reason for it as well as a solution to clear it.

As for your PS .. I hope to goodness it is a place where everyone is civil at least if not positively happy together knowing that at some point in their lives they all loved more than one person. I have already asked Mick if he can ask his Mum to stop bloody hoovering at 6am . It seems that earthly habits go with you I swear that is what wakes me up every morning around that time.

xxx

User

Posted 07 Jun 2014 at 11:42

Thinking of you all.
Had a similar journey but with longer timeline and even that was difficult.
Re: what happens next.
IF there is another place (and like Karen I feel there must be or what's it all about otherwise) I am assuming that there are no divisions or splits, no animosity, no actual personal relationships, just peace and love for each and every one of us. In general, happiness and no pain.
As for the other place (which I am sure you are not destined for) I have never, well not since my Catholic childhood, assumed that it will be a place of leaping flames.
I like to think of it more as an intense knowledge and understanding of all the evils they have done and the feeling of the pain of the person/s affected by those actions.
Keep strong and I hope you get some resolution regarding your pain. Best Wishes Sandra

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

User

Posted 07 Jun 2014 at 12:03

Barry sorry to hear the pain in the axse is worse. Hopefully the onc will shed some light on it and provide something to alleviate it.
Absolutely terrible news about the other people in your life. But, and please don't take this the wrong way, you perhaps have to be selfish at this time and think of yourself and put yourself first.

Regarding your PS I have often wondered if there should be a different thread regarding such things. I know my lovely aunty was helped, with her faith that she would see her family again, in her last few months

User

Posted 07 Jun 2014 at 12:12

Bloody hell Barry what a difficult time you and your family are having. There are no easy answers here. I don't know if the presence of so many problems at least enables you all to discuss and share problems rather than struggle to find the words. I do think the contemporary world has shied away from discussing those ultimate questions around life and death and yet its presence remains all around us, as sadly for you Barry is patently obvious. You are a strong determined individual and I hope your positive approach brings some relief to those suffering around you.

Hope they get to the bottom of the bottom problem, so to speak! Looking forward to seeing you in Leicester. I know you are determined to be there and claim your sarnies!

Now to the existential problem. My favourite quote has always been Julian Barnes's where he says: ‘After death, either we feel better or we feel nothing.’ I have little faith and tend towards a long sleep. It would be a bit of a nightmare if I were to wake up after life and be confronted with my ex-wife. To be honest its hard enough in real life! I think the mind cannot really contemplate what happens, if anything, after death because it cannot contemplate death easily. So we have stories provided by religions, which give some of us a comfort that somehow, in some form, life continues. If it does maybe it would be great to meet those you miss and we all miss so many people, but I guess, to quote, Monty Python, I would prefer 'something completely different'. So I tend to the Barnes quote and a long painless sleep, sounds strangely inviting!

User

Posted 07 Jun 2014 at 12:19

I'm also really sorry to hear of your current circumstances. I lost both my parents and my wife lost her mother all within a few months and so I know very well the feelings you have. That said, it was before I was diagnosed so I didn't have that to cope with as well so I do feel for you.

As for the other thing I'm a confirmed nonbeliever and so I'm afraid I can't throw any light on that whatsoever.

Hope you're feeling better soon Barry

User

Posted 08 Jun 2014 at 22:52

Hi

Well been an interesting weekend as dad (TG) said, had to deal with my mother and her bad news re leukaemia. Black tie dinner Friday so home at 2:30am. Pick mum and husband up on Saturday am. Host them and my sister in the fore mentioned new house dad mentioned on previous post. Read all the info on leukaemia. I'm going to get a GCSE on cancer this year at this rate!! Take her back this am.

On Thursday take my kids to their other grand dad funeral.

My blood pressure is fine. Sort of amusing really. Friday we have a health visitor around as we have upped our health insurance and they want to check us out. My mother is on the phone telling me her diagnosis and she is clearly upset, when the nurse turns up. I then have a few other calls before she takes my blood pressure and it's a little high and asks me if everything is ok. Of course I didn't want to let her know about mums issue as she is employed by insurance company. My wife didn't know it was my mum on the phone either so was a little surprised when my sister called during my tests to discuss my mothers leukaemia and had no clue what she was taking about.
Anyway two minutes later and all fine re the 2nd blood test.

Needless to say busy weekend.

I'm bringing dad and Karen to Leicester all being well so may see some of you there which would be good to see all the people that are helping support my dad.

TG. Hope they diagnose the pain in the arse. Get the doctor to use a miners lamp. A modern one though not the old one with a flame as that may be dangerous and explode when he looks ups your arse.

No 1 son james.

Edited by member 08 Jun 2014 at 22:52 | Reason: Not specified

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 09 Jun 2014 at 07:23

I think No. 1 son is a real star, but then I also think he must have had a good role model. Good luck Barry and I hope for some relief for you.
Well done James - but remember because all those people are relying heavily on you, it will be easy to forget that you too need to stop occasionally and take a big breath and a bit of me time if you can manage it.
Since I've been a member of this site I have been constantly amazed and humbled by the actions and reactions of everyone here.
What a great bunch of people you all are.

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

User

Posted 09 Jun 2014 at 07:35

The human spirit is amazing. Good luck to all of you this week. I hope you get rid of that pain in the bum, TG.

Today, I have to take my mother-in-law for a hospital appointment, meet a guy with her afterwards to sort a few things out, and then a funeral for another great guy from the golf club. This is the 6th in 3 years that cancer has taken from us.

As Johsan says, James looks like a chip of the old block. You can be very proud.

Paul

Stay Calm And Carry On.

User

Posted 09 Jun 2014 at 09:23

Hi Barry,

It is no surprise to me how well James is coping, like father like son. He has the best role model. Good luck for your GP visit today lets hope something can be found http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif and then you can start to get it sorted.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 09 Jun 2014 at 09:57

Agree with everyone, Barry, James has the best role model, and I look forward to meeting him and his wife.

In the meantime I hope amongst your appointments someone can find a way to relieve the pain, so difficult to live with.

Love to you and Karen, Janet

User

Posted 09 Jun 2014 at 11:38

Will think of you on Thursday, TG. Neil also having second chemo that day. What a star your no., 1 son is. Hope the pain in the you know where can be sorted and all the best for your get together at Leicester !

Fiona.

User

Posted 09 Jun 2014 at 18:34

Hi all,
Back from seeing my GP who thankfully is a gentle giant.
After carefully listening to myself and Karen he tried to give me an internal but had to stop as it was too painful........for me not him!
Anyway he is of the opinion that there is a tumour(s) around the area of the bowels which is causing a partial blocking and feeling of pressure. He thinks I need directional RT onto the tumour(s) in question to help reduce the size. He will inform my Onco of this who I see on Wednesday and also the palliative care team. So that looks like the next step. He has also prescribed yet another pain killer to be used nightly alongside the Oramorph/Zomorph which will not only help with the pain but should help with my sleep pattern which is currently a rather chequered one.
So until Wednesday good people I will say adieu.
Life is for living
Barry (alias Barrington )

User

Posted 09 Jun 2014 at 19:33

Best of luck TG. Keep at it!

Stay Calm And Carry On.

User

Posted 09 Jun 2014 at 21:11

Thinking of you TG Good luck for Wednesday and hoping they can put a plan together.

Keep at em mate

Bri

User

Posted 09 Jun 2014 at 21:38

Wow TG, you have a GP who actually doesn't mind looking.
I too had a gentle giant at the surgery and I felt I could tell him everything. Great big bear of a man who always had time for you.
He appears to have been replace by a doctor who John and I refer to as Dr. Handsoff since the merest mention of anything that actually requires looking at is greeted with a blank look.
Anyway, good luck for Wednesday. Hope you get something resolved. Best Wishes Sandra

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

User

Posted 09 Jun 2014 at 22:56

I am hoping the new painkiller works quickly, Barry, and if it helps you sleep so much the better. It is hard enough for you, and lack of sleep only makes it all worse.
Hoping you get some help from your onco on Wednesday, love to you and Karen, Janet, xx

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

User

Posted 11 Jun 2014 at 12:26

Hi Mo,
Thank you for your kind thoughts especially at a time when you have so much sorrow and no doubt a lot on your plate. I do take Macrogol normally about 3 times a day. I do think you are spot on though in that it feels like it is squeezing past an obstruction when I open my bowels......very messy too but not like diarrhoea.
Yes Leicester will still be upon us and it will be nice meeting up with you and many friends. We are only staying for the day now but there will be lots of laughs and hugs.
If Julie and Lyn read this I think we will be in No 1 sons Jag but I think his wife is bringing her Porche in which case for a small donation they will let you have a ride around the car park with a signed photo 📷 thrown 🚽 in.
Seeing Onco in 90 minutes, I will return!
Life is for living
Barry (alias Barrington )

User

Posted 11 Jun 2014 at 13:32

Good luck with onco appiontment today Barry hope we can have good news with regard to chemo treatment.
Thank you for reply about Eric and blimucamide
Carol

User

Posted 11 Jun 2014 at 13:44

Barry,
Re your PS, who knows what goes on up-stairs ? But with all our lot up there already, they should be able to sort out the ex's and partners ready for our arrival as it should be a GREAT BIG PARTY TIME and we all should get on.

That's my theory and I'm praying for it.

Sorry to read about your latest 'bum' pains, hope they get sorted soon, best of luck when you see ONCO.

Best wishes, see you at Leicester. (no boobies this year I'm afraid)

Chris.

User

Posted 11 Jun 2014 at 16:54

Hi all,
Well back from seeing my Onco and it was good to see the look of surprise on his face when I told him that we had been on a cruise and to be fair he saw the odd photo of the wonderful scenery and said "good for you, the best thing you could have done.....but cancel the transatlantic cruise you have booked for October.
From there dear punters it all went downhill with a double whammy.
There is a tumour near the bowels hindering normal bowel motions and which is also causing the pain and feeling of pressure. He can not do any more RT to reduce the size of the tumour as although my previous RT was 15 years ago it was very extensive ( not with today's spot on refinement). It was of course in the same region as any RT now would be given and the thinking is that the dosage needed to reduce the tumour would in all probability cause more damage to the bowel and surrounding area....in other words a no go.
The second whammy came when it was shown that the chemo is not working and my liver blood counts have got progressively worse. Having the bile duct stent put in in March certainly was a good move and I am not jaundice at all and that gave rise to an improvement in the blood count. However the chemo is not working and he has stopped any further chemo for the time being including tomorrow's planned armful.....have to find something else to do now!
The net result is that for the moment I will not be having any more treatment with the possibility that the liver might do a bit better without chemo. The priority now is pain relief, my pain nurse has been informed and we are about to go on the merry go round of various drugs. This might entail a couple of nights in my local hospice where I can be constantly monitored.
So not the best of news but whilst chemo has not worked for me that is not to say that it won't work for those of you on it or about to go on it. I have had no real ill effects with it and would quite happily continued with it but it wasn't to be.
Karen and I have decided that we must make the most of the summer days/ nights going out and about taking in the beautiful countryside we are blessed with around here. Picnics will be the order of the day. I still intend to see so many old friends and meet new faces at the Leicester gig, only staying for the one day now and then heading back to No 1 sons house before going off to the Runnymede Hotel on the Thames to celebrate our Silver Wedding Anniversary on the 24th June .... I have booked a HOTTUG for the afternoon.....a small yellow roundish boat / hot tub affair which has a wooden boiler on it which keeps the water you sit in at 37 degrees as you meander down the Thames whilst sipping a glass of champagne. Some things have to be done if only once.
So there you have it, not good news but believe me the fight goes on as right now.......
Life is for living
Barry (alias Barrington )
PS Hi Chris,
Like your idea of "A party made in heaven" in my short time on this earth I have met so many wonderful people, men and woman who are loving, caring and give so much of their lives in order to help others. Being in the Forces I have met soldiers from all races and faiths all of whom I recall with great fondness, especially my Nepalese Gurkha friends. They might be of a different faith but they will fill heaven with their joviality and warmth.....what a party it will be

Edited by member 11 Jun 2014 at 18:22 | Reason: Not specified

User

Posted 11 Jun 2014 at 17:56

Hi Barry
was hoping it would be better news on the chemo front as you know it has had no change for Eric.
How is Karen with this news?
You both are doing the right thing being toghther having days out picnics sounds wonderful.I envey you both on that one there is no point me saying stay strong as everyone knowns what a strong character you are.
Eric and I both send our best wishes to you and Karen
Carol

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 11 Jun 2014 at 18:28

Sorry your news isn't better, Barry. Picnics in your lovely countryside with Karen sounds the best way to spend the long days of summer. I wish I could have seen the look on your onco's face when you told him about Norway, I remember how happy I was to see your photos.

Hope the hospice can sort your pain relief quickly so you can get on with your exploits around Dorset. And not long now until Leicester.

Love to you and Karen, Janet , xx

User

Posted 11 Jun 2014 at 18:38

Enjoy Leicester TG and give young Lynne one from me,no not that you old fool, a drink and a hug is what I meant.Best Wishes Diesel x

User

Posted 11 Jun 2014 at 18:52

Tough news Barry but you have asked the right questions. Your Onco is obviously good in that no treatment is sometimes of greater benefit than treatments which do nothing but cause more harm.

You have tried the chemo & I'm sorry you haven't had better results. However , as you say, it varies in success.

I know you will use this extra free time wisely !

User

Posted 11 Jun 2014 at 19:01

Sorry to hear this TG. Your signature as always says it all and now is the time to have some quality of life.
Your anniversary jaunt sounds just the ticket you romantic old git :)
I do hope Karen is coping ok with everything. I will see you at Leicester but presume no scooter for me to pull wheelies on. We are just there for the afternoon but will get chance to catch up

Take care
Bri

User

Posted 11 Jun 2014 at 19:11

TG I am just about lost for words ... being brave is one thing being realistic is the one we all find hard to get our heads around. I applaud your decision to go and enjoy your lovely countryside. I am just hoping I can be of some support for you, Karen and your family going forwards.

Leicester is just around the corner now and without chemo I guess you might even risk a beer or two

xxxxx

User

Posted 11 Jun 2014 at 19:26

Dear Barry,

I am so sorry to hear the latest news.

I'm sheddiing my daft Geordie 'Howay Man' persona, to say out loud:

WE ALL LOVE YOU TO BITS ME OLD MATE

and.....

On June 21st we're gonna party like it's 1969 (now that was a good year!).

See you very soon,

Love from Lynn and Katrina too,

George
.
.
.
.
.
.
.
.
.
.
.
.

B2PCa

User

Posted 11 Jun 2014 at 20:13

TopGun - TopMan!

User

Posted 11 Jun 2014 at 22:21

Hoping for some truly lovely days so you can enjoy those picnics ! My love to you and Karen,

Fiona.

User

Posted 11 Jun 2014 at 22:49

Barry,
I'm so sorry to read this news, taken on the chin once again by one of the most amazing people I have ever met. I'll leave it until tomorrow to tell John, he is very emotional about your situation, though being an ex Blue job, he does get your approach, he has a very similar view point.

I'm so looking forward to a gentle hug at the MOS, maybe now is the time to sink a few.

With my most fondest love to you and Karen xxxxx

User

Posted 11 Jun 2014 at 22:49

Thinking of you and Karen TG. All the best. Sandra

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

User

Posted 11 Jun 2014 at 22:56

Barry,
Just home to read your news. Somehow I think you prepared us for this and whilst you always knew this would happen at some point it cannot be easy when that reality hits you. The big urgency is to get your pain meds sorted so you can enjoy reasonable quality of life to make the most of your time with Karen, family and friends and of course the Leicester gathering. It will be great to see you again.

I just know you will continue to make the most of things and you have my sincere best wishes for your continued journey. Thinking of you!

User

Posted 12 Jun 2014 at 00:24

Hi

As dad says life is for living. Yep a major set back but let's make the best of it.

I'm taking a few days off with my buddies and going to Le Mans.

Will see you next week and looking forward in taking you and Karen to see your buddies in Leicester.

Better get some sleep got to be up in 4 hours.

No 1 son. James.

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 12 Jun 2014 at 12:49

Hi all,
Latest sitrep from the front, my Oncologist has just rang. He has spent a bit longer perusing my scan of last week. Whilst nothing has gone to the bones the mass around the pelvis and bowel has increased considerably but more importantly so have the tumours in the lungs and liver. He and I have known each other for many years and I would under any other circumstances consider him a friend ( he always introduces himself by his 1st name.....which amazingly is even posher than my Barrington ). As such he knows me and is quite open and frank about what lies ahead, I am not into hiding things. You will all know that this latest news isn't what you would want but all is not lost.
He is looking at what possibly could now be given, Abiraterone is not an option due to liver damage but he has got permission for me to have the latest thing on the market.....Enzalutamide. The apparent downside to that is that it takes a little while to get into the system and Onco's words were " it might be too late". Given that back in March Easter wasn't looking very promising then it's all worth a go. For 8 months treatment (see I am already looking at 8 months) the cost is a cool £25,269.
Further to that I am being admitted to our local Weldmar Hospice tomorrow for them to try and get to grips with the pain control side of things. I am a bit reluctant but it does seem the way ahead. The Hospice is a truly lovely place in beautiful grounds very peaceful, and importantly my Border Terrier, Poppy is allowed to visit. The advantage of being there is that I will be seeing a doctor throughout the weekend and will I guess be given a cocktail of drugs as things are monitored.
I have told them that I must be out by Wednesday.....trip to Leicester begins on Thursday.
Don't know if I will be able to sling my hammock by their pond and waterfall but the peace and quiet will no doubt do me good before the pandemonium that the Leicester gig brings.
Take care all
Life is for living
Barry (alias Barrington )

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