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Ever Decreasing Circles part three

User
Posted Thursday, April 14, 2016 8:26:06 PM(UTC)
It's a real pain!
User
Posted Thursday, April 14, 2016 8:29:36 PM(UTC)
Such a lovely post Paul, your photos were great. I'm sure that novel will soon be on your desk.
Thanked 1 time
User
Posted Thursday, April 14, 2016 8:46:44 PM(UTC)
Paul how fantastic such an upbeat post. Those steroids really do help

Loved all the Malta photos too
Xx
Mo
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User
Posted Thursday, April 14, 2016 9:29:56 PM(UTC)
Hi Paul,
Yes the page flip problem is still ongoing but I still know where to find you😍 Maybe there should be a stickie or a stuckie on page 8 when page 9 is not found , something like.
For all new comers when trying to access pages that are not found a double back flip to the previous page πŸ™ƒ Usually sorts out the problem but a generous helping of steroids is usually needled to accomplish the back flip.
Just a thought but maybe Sadie could hand them out at the door.😊
So enough sarcasm , photos were lovely and warmed my heart so glad that you have had some relaxing and fun time. I know the steroids are strong stuf and have equally strong side affects but there is no denying the boost that they can give.
BFN
Julie X
Ps stay of the roof 😎
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted Thursday, April 14, 2016 10:31:58 PM(UTC)

Thanks everyone for your supportive words and I like Julie's idea of using steroids to solve all problems. If only....

User
Posted Friday, April 15, 2016 6:58:13 AM(UTC)

Wow just read this. Sounds like you are in a better place then you have been for a long time.

Long may it continue

Bri

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User
Posted Friday, April 15, 2016 7:05:28 AM(UTC)

just read it myself cheered me up no end

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted Friday, April 15, 2016 4:33:12 PM(UTC)
Hi Paul
Great to see how much the steroids have helped you. And to also spend a few days away in sunny Malta, with your daughter, an added bonus!
We spent a few days in the lake district, wasn't quite so sunny but a nice break.
Lesley x
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User
Posted Friday, April 15, 2016 5:30:51 PM(UTC)

Hi Paul
Although you must be worried about progression and its effects your post truly showed hope and a sense of personal relief for you. I want it to last for you forever. Your courage and calm inspires me. Have a good weekend
Chris




If life gives you lemons , then make lemonade
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User
Posted Friday, April 15, 2016 9:01:17 PM(UTC)

Thanks Chris. I appreciate the sentiment. I think accepting the inevitable allows you to get on with life and leave the worry about dying to the medics. I have done well even if the aches and pains have been a bit debilitating. I have got better at managing myself through the day and through the week but the steroids have given me a particular boost over the last few weeks which has enabled me to do so much. I,ll take whatever is next, I'm just glad still to be here!

Have a good weekend.

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User
Posted Friday, April 15, 2016 9:26:50 PM(UTC)

So pleased for you that you are having this boost. Hope it lasts as long as possible.

Rosy

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User
Posted Tuesday, May 3, 2016 11:56:51 AM(UTC)

So the scores are in and amazingly good they are too. My PSA has dropped, yes dropped, from 53 to 19.57. It's halved and more. Onco not quite sure why this has happened could be a delayed effect from ending casodex in January and/or the impact of the steroid. Anyway whatever it is we are keeping enzalutimide in the cupboard for at least another eight weeks and continuing on the steroids.

I am feeling so good at the moment. Got through a lot of writing projects in last six weeks and had a wonderful send off from the university last Thursday. I am now retired though continuing some national work so I can now get back to the novel, which has laid fallow for too long. With the continuation of the steroids I hope this will be a productive few weeks. I have virtually no pain even in my troublesome right leg, tiredness is manageable and my head is buzzing in a good way. So what better way to start retirement, a good news story as unexpected as it was appreciated. It's a strange disease this sometimes!

User
Posted Tuesday, May 3, 2016 12:08:31 PM(UTC)

So pleased for you Paul
What a result and outcome. Fingers crossed
Chris




If life gives you lemons , then make lemonade
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User
Posted Tuesday, May 3, 2016 12:13:09 PM(UTC)
P

Brilliant news, you deserve some good fortune. Enjoy your retirement and I look forward to seeing your book being published.

Thanks Chris
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User
Posted Tuesday, May 3, 2016 12:21:38 PM(UTC)

That sounds great Paul.
I didn't know that the steroids could have that sort of effect on PSA. Awesome that you are feeling so well and positive.I have been having the same steroid but in larger doses and for the first 3 days of each chemo cycle. I think its just to give me a bit of a lift before the cycle kicks in properly.
Looks like you are really going to enjoy your retirement, so much to do! I imagine you have kept up the food appreciation too, I understand steroids help in that regard. For whatever reason right through chemo I have loved my food and drink, it has been a bonus :) It is a crazy disease and we just don't know what to expect next, that frustrates me the most.So many inspirational stories on this site tho.
Go well everybody and may you have a glorious UK summer to enjoy.It has been amazingly good in Auckland and still ongoing as I write and damn it I deserve that!!

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
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User
Posted Tuesday, May 3, 2016 12:36:03 PM(UTC)

Thanks Martin. I think the impact of steroids has been unexpected but great. I know it is used in chemo partly to counteract the negative impact of chemo itself so the dosage is much higher but I guess it just gets balanced out with the chemo. For me it has been a relevation. I kept telling myself this will not impact on disease progression and so I was very surprised today. I know it won't last but I will enjoy it and glad I can continue with this improved feeling for a few weeks longer. My taste for food has indeed returned and this I will have to watch but really enjoying my food which is great after a year when I was beginning to lose interest in food. Hope your journey continues ok and enjoy Auckland, I have been there a few times and my son-in-law hails from there!

User
Posted Tuesday, May 3, 2016 12:49:03 PM(UTC)

A big welcome down under if you do make the journey again!

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
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User
Posted Tuesday, May 3, 2016 1:31:02 PM(UTC)
Paul

Marvellous!! Good news for you all round.

Well done, Arthur
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User
Posted Tuesday, May 3, 2016 2:35:14 PM(UTC)
Paul, glad to hear about the PSA fall. I commenced Enza three months ago and mine has fallen 90% down to 1.6 with the previously affected lymph nodes returning to normal size.

I feel very overweight but otherwise as fit as a butcher's dog (one that does get tired) but I sleep when I'm tired and wake when I'm not. I roll with the wind and flow with the tide. Looks like you're doing the same.

Continue to enjoy life brother.

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
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User
Posted Tuesday, May 3, 2016 2:41:33 PM(UTC)
Paul,

That's great news re your score. Really pleased for you.

John
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User
Posted Tuesday, May 3, 2016 3:21:55 PM(UTC)
That is great news, esp as you still have enza in the cupboard!
Glen
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User
Posted Tuesday, May 3, 2016 4:25:34 PM(UTC)

Hi Paul,

That is a remarkable result! - And you still have Enzalutamide if/when needed. What a great start to your retirement.

It's so good to see unexpected surprises like this. Brilliant news!


See you at The Mill,

George

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User
Posted Tuesday, May 3, 2016 4:59:55 PM(UTC)

Brilliant if a somewhat unexpected result...but then that would have made the news so much better as well.

As others have said a great start to your retirement. Make sure you do all those things you have put off

Bri

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User
Posted Tuesday, May 3, 2016 5:09:44 PM(UTC)

Great news!  

 

Flexi

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User
Posted Tuesday, May 3, 2016 5:30:32 PM(UTC)
How nice to read such lovely news coinciding with your retirement. The only problem I have found with retirement is that there is so much to do but it is great to be able use your day as you want.

Best wishes for the future.

Kevan
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User
Posted Tuesday, May 3, 2016 5:41:14 PM(UTC)
Paul
I am so happy for you I did a little dance when I read your post, I bopped all the way to the fridge and poured myself a celebratory G&T and I have to say it tastes every bit as good as your news.
Now retired and with time on your hands to finish that long awaited novel.
Really looking forward to seeing you at the Mill.
xxx
Mo
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User
Posted Tuesday, May 3, 2016 7:07:41 PM(UTC)

Really good news for you Paul...

Pleased that you will be able to concentrate on the projects that you intended to work on now you have retired....


How we all differ.....I retired almost 7 years ago, and have done bugger all since ... but I enjoy every minute! .. 

Best wishes to you

Luther

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User
Posted Tuesday, May 3, 2016 7:32:37 PM(UTC)

Hi Paul

I don’t know what it is you are doing but with your numbers and the improvements which you are experiencing keep on doing it! It is great that the improvements have coincided with your retirement.

This shows once again that this disease is unpredictable and sometimes not understood! See you in Leicester.

Alan

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User
Posted Tuesday, May 3, 2016 8:02:21 PM(UTC)
So good to read your news Paul, hopefully will improve further, I look forward to the publication of your novel!
Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
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User
Posted Tuesday, May 3, 2016 8:22:02 PM(UTC)

Hi Paul,

I'm so pleased to hear that you feel so much better and to see your great PSA results.  That is such good news and a great way to begin retirement.

Settle back, enjoy the cricket, finish the novel and have a great time at the Mill next month.

Take care.

Steve

 

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User
Posted Tuesday, May 3, 2016 8:49:57 PM(UTC)

This is wonderful news, I am really pleased for you paul. Enjoy your retirement.
Lesley x
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User
Posted Tuesday, May 3, 2016 10:07:48 PM(UTC)
Whoo hooo see I told you Paul those steroids will have you dancing on the roof in no time, your post my friend has got me dancing in the aisles. Fab news I am so so happy for you.
Way to go I must admit I did think your face on the pics on fb seemed happier . That news has made my day.πŸ™ƒ
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted Wednesday, May 4, 2016 5:22:29 PM(UTC)
Hi Paul this is such great news
I was in Donny at the weekend with the kids at the Dome playing on the water slides if I knew you was as high as a kite I would have invited you

Looking forward to a few beers and a catch up soon
Si
Don't deny the diagnosis; try to defy the verdict
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User
Posted Wednesday, May 4, 2016 7:20:55 PM(UTC)
What a wonderful post to read. I'm so delighted for you Paul.
Love
Devonmaid xxx
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User
Posted Wednesday, May 4, 2016 8:40:28 PM(UTC)

I prefer to hope it is antiandrogen withdrawal, mainly because - based on your responses so far - that may be sustainable for a significantly longer time than steroids might be.

Whatever it is, it is marvellous to see you so bright and sparky, my friend xxx

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


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User
Posted Thursday, May 5, 2016 1:33:59 PM(UTC)

Thanks to everyone for their kind words. I am not banking on this being a long respite though it is now four months ago since enzo was first on the table. Any delay before the next drug increases life expectancy so I am not complaining. I suspect, Lyn, whether it is delayed reaction to ending casodex or steroid or both neither are long term solutions. But if I get another eight weeks feeling like this I will settle for that first and deal with the aftermath when it occurs.

A very close friend of mine has just been diagnosed with advanced metatastic PCa with bone mets but no soft tissue spread and he has started immediately on chemo. Such a different route for new starters now. I still have that delight to look forward to at some point.

The simple fact is its nearly four and a half years ago this all started and by focusing on my life and living it to the full I let the disease take care of itself. I will let me doctors look after treatments, I will look after my retirement pursuits, seems a good division of labour.

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User
Posted Wednesday, May 18, 2016 12:46:54 PM(UTC)

In case anyone is interested I was interviewed on BBC Radio Sheffield today talking about. 'My life so far'. This was a general interview around my retirement from the university but did focus on my cancer quite a bit. Anyway it can be found here at 2 hours 10 minutes in and lasts for about 15 minutes. http://www.bbc.co.uk/programmes/p03tpnf7#play Let me know if the link does not work.

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User
Posted Wednesday, May 18, 2016 1:39:22 PM(UTC)
Loved it Paul you sound just like Mr KiplingπŸ€—
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted Wednesday, May 18, 2016 3:19:58 PM(UTC)
Paul ,

You're the first of the Online Community folk I've heard speak ! Really enjoyed listening to you. I now have a new ambition and that is to be able to play " when I'm 64" on my 64th birthday. I've just turned 59, so it's something to aim for.
Re childcare, my wife and I both worked part time after our twin daughters were born, so I agree with you that it's something special to be able as a father to have been so closely involved in their upbringing. This continued for me until they were in their early teens.

Wishing all the very best ,

John
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User
Posted Wednesday, May 18, 2016 3:56:25 PM(UTC)

Mr Kipling indeed. Really interesting too

We can't control the winds - but we can adjust our sails
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User
Posted Wednesday, May 18, 2016 4:18:52 PM(UTC)

Very interesting Paul,

Thanks for the the link....

BTW.......Speaking as a bloke who originates from the west country ....it's the interviewer that sounds like Mr Kipling to me...not you! 

Best wishes

Luther

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User
Posted Wednesday, May 18, 2016 7:55:01 PM(UTC)

Good interview, thanks.

User
Posted Friday, July 1, 2016 11:05:11 AM(UTC)

Well although this happened four days ago I can report on a great visit to the onco. The reason for the delay is I have had an horrendous gastro enteritis bug which has really laid me low, the second such attack in six weeks, so much for retirement! My son took me for my onco visit but I have been struggling to function this week but gradually building up my strength again. Anyway it did not take the gloss off another unexpected bonus.

My PSA which had dropped from 53 to 19 is now 10.34. The onco thinks that the steroid is making a difference and so enzo kept in the box and another eight weeks of low dose steroids. I am so pleased with this bonus as enzo was due to start in January and it's still safety in its plastic wrapping.

User
Posted Friday, July 1, 2016 11:11:12 AM(UTC)

Brilliant news Paul. I am so pleased for you, especially about Enzo.

Hope you are recovering well from the stomach bug. Not nice at all


*****

We can't control the winds - but we can adjust our sails
User
Posted Friday, July 1, 2016 11:22:11 AM(UTC)

Good news for you Paul,

Pleased to read this.

Sorry to hear about the Gastro bug.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted Friday, July 1, 2016 11:51:41 AM(UTC)

Great news Paul
Bugs are awful but great for weight loss pre holiday haha. Glad things still looking good for you at the mo




If life gives you lemons , then make lemonade
User
Posted Friday, July 1, 2016 11:59:15 AM(UTC)

Paul, that's EXCELLENT news!

If anything will get you over the double assaults of the gastro enteritis bug (which must have had you totally down), then it's such a unexpected but very welcome PSA result like that.

And as you say, the enzalutamide is STILL in the box.

Incredible!

 

Keep on doing what you're doing.

 

 

George

User
Posted Friday, July 1, 2016 12:36:39 PM(UTC)
Great news - really pleased for you.

John

User
Posted Friday, July 1, 2016 1:21:38 PM(UTC)

It appears the page turner has not been resolved since last time I had to do this

User
Posted Friday, July 1, 2016 1:21:56 PM(UTC)

And this

And relax I have made it to page 10! Anyway update on previous page!
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