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15 years on (continued)

User
Posted 11 Jun 2014 at 11:26
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 12:32
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 12:44
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 15:54
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 17:22  | Reason: Not specified

User
Posted 11 Jun 2014 at 16:56
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 16:56
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 17:28
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 17:38
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 17:52

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 18:01
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 18:11

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

Mo

User
Posted 11 Jun 2014 at 18:26
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

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User
Posted 11 Jun 2014 at 19:13

TopGun - TopMan!

User
Posted 11 Jun 2014 at 21:21

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 21:49
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 21:49
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 21:56
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 11 Jun 2014 at 23:24
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 06:00
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 11:49
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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