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Simon Story Chapter 2

User
Posted 28 Jun 2016 at 17:50

Si you have always been clear about your views on your treatment path which has served you well. However, you also respect Jamie who has proven he is a forward thinking oncol.
Enjoy your hols with your lovely family but then listen to what Jamies clinical/professional opinion is....he has also served you well

Bri

User
Posted 28 Jun 2016 at 18:53

Enjoy your holiday Si.

You have a consultant there that regards you as an intelligent human being and not just a number on his books.

I hope when you meet with him after your holiday that it's a meeting of like minds.

We can't control the winds - but we can adjust our sails
User
Posted 28 Jun 2016 at 22:37
My wingman,
I have been wondering what has been going on so holiday is booked enjoy , enjoy , enjoy have a fab time and think of me while you are relaxing . The old lady that lived in the shoe she had so many children in my case dogs that she never gets a holiday😫.
So the PSA is ever so slightly increasing unlike most on here I have every faith in you that you will make the right choices at just the right time, I know you will push it to the edge😳 but as Dell Boy would have said "He who dares Wins" .

It always amazes me how similar you and Trevor are not just in looks obviously😎 but in bone progression and Trevor with his super uber PSA we are know just over 1500 , this disease is crazy.
Lots of love from my gang to your gang.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jun 2016 at 22:40
Ps do you no any one that could put up a picket fence for me πŸ™ƒ
NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jun 2016 at 22:54

Sorry Si, I am going to disappoint you.

Do you remember when you told Jamie that Ness was okay with it, and told Ness that Jamie was okay with it, and then you were in a whole heap of trouble??? Well we are not going to let you f*** this one up my friend. According to your latest update, your doubling time is somewhere around three weeks - that's a tad worrying. So what is your plan, and what is Jamie's plan? I need to know both before I commit to one side or the other, I'm afraid :-0 If you force Jamie to go with another of your madcap ideas, the only thing I will be able to do is print off this thread and show the reckless doctors' court that he had no choice. Obviously the reckless doctors' judge will be blown away by Julie's 'who dares wins' approach but it might be more sensible to get the treatment and stick around long enough to mend her fence for her.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jun 2016 at 23:19
Si Si ,
You no it makes sense. (What Lyn says )😐
NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jun 2016 at 13:55
Methinks Si has a right to choose but also a responsibility to be mindful of others. Right now he is trying his best to balance both.

Jamie understands and I'm sure has already explained his issues to Si.
In all the discussions I have had with Si about his approach to treatment he has always been rational and has watched things like his scans which show no progression his very low Alp which probably shows no significant mets activity and he always has a back up plan. So if PSA and Testosterone reach a specific level he will go back onto HT or opt for second wave of chemo or whatever Jamie suggests.

I may not always agree with him but I know him well enough now to recognise it would be futile for me to argue with him.
I'm certain Ness is even more aware that the more we opine the more cantankerous he will get!!

Love them all to bits
Xxxx
Mo
User
Posted 29 Jun 2016 at 14:12

Si


Good luck what ever route you choose.


Thanks Chris

User
Posted 29 Jun 2016 at 20:19

Another site glitch in that it shows the last post at page 10 of 10 pages, and page 10 is not found.

Not sure what meds you are on at the moment? A cocktail of guts, nerve, audacity, adrenaline, with a base of Fosters.

It's working for you mate, long may it continue to do so. I am not sure I would have had the courage?

Hang on, Courage is bitter, You don't do Bitter! :-)

Have a great holiday in that there Europe! PMSL

x

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 29 Jun 2016 at 23:06

I heard Jamie needs counselling after each review with you Si?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jun 2016 at 12:34

Enjoy a fabulous holiday Si. You, Ness and the twins deserve one.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif


 


I have to say I couldn't agree more with this piece in Mo's post:


 


"He has always been rational and has watched things like his scans which show no progression  his very low Alp which probably shows no significant mets activity and he always has a back up plan. So if PSA and Testosterone reach a specific level he will go back onto HT or opt for second wave of chemo or whatever Jamie suggests.
I may not always agree with him but I know him well enough now to recognise it would be futile for me to argue with him."


 


Si, I thoroughly enjoyed our long chat about this two weeks ago on the Friday night at The Mill.


I like and admire the way you think, and I'm fully confident you'll do what you know is best for you.


We're each as unique as our cancers, and you have got that nailed.


Good luck my friend. That rational thinking of yours will see you through.


 


All the very best,


 


 


George


 


 

User
Posted 02 Jul 2016 at 07:22

Thank you for all your comments, we really appreciate them.


So things where never going to be as easy as holiday then see Jamie in September. Hospital rang yesterday they want to do bloods again and see Jamie on the 14th July, they are not happy with the level of increase of my PSA.


Now correct me if i am wrong but i still have a prostate, have never had RT to it so why would my PSA not rise especially as i am not having any treatment. And if they was not using a super sensitive test then my PSA would be <0.1.


I love my medical team to bits but sometimes they need to understand were my priorities lay, in August me and my girls will be Jet skiing, parascending horse riding on the beach and having fun so cancer can do one, and in September the gloves are off.


hope everyone has a good a weekend as they possibly can.


Si xx 


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jul 2016 at 07:58
Si
I don't always agree with you, but here I follow your logic and sort of agree. If everything else reads well I'd go have that test, have a chat with Jamie as requested with Ness there too . Listen to his clinical assessment and then decide if you are playing Russian roulette or not.

It has to be your decision.

I wish you maximum wisdom and will chat soon.
Xxx
Mo
User
Posted 02 Jul 2016 at 08:22

Good to have you back Mo, hope the holiday went well, biking in that lovely sunshine http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Russian roulette no that's not me, lots of research and informed decisions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Instead of two days at hospital i could be fixing Julies picket fence. 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jul 2016 at 10:29

Si you will do what you will do and nobody can criticise you for that...just make sure you have a brill holiday

Bri

User
Posted 02 Jul 2016 at 11:49

Si,

I agree with you about that PSA level. You're on no treatment, and yes, you still have a prostate.
On top of all that your scans have been so good.

In 2010 I had been lucky enough to have been able to have a break from treatment for three years.
Over that time PSA climbed slowly to 7.0 and I was summoned to see my urologist.

I only agreed to attend because my cancer nurses at that hospital had told me that he'd be offering me new scans.
Since it had been five years since the last ones (MRI, CT, bone etc) I was looking forward to seeing what had changed over those years.

It turned out to be nothing of the sort.
After telling me how lucky I was to still be here after he wrote me off in 2005, he said 'Your PSA is obviously climbing, cancer is active again. I could offer you chemo, but perhaps you'd prefer quality of life over such radical treatment".

That was the shortest appointment in my 11yrs of the PCa battle.
I was flabbergasted. Had he actually checked my notes and seen I was on no treatment?

My good outcome so far had nothing to do with his 'wisdom and judgement' (Ha!) and everything to do with my oncologist at my main cancer hospital since 2005.

I think everyone here knows my favourite word, and it took me only seconds to use it.
I told him he was talking complete bollocks and that I wouldn't bee seeing him again, stood up at left.

A month later, when I had an appointment with my oncologist and related the story, he was absolutely furious at what the urologist had said.

Incidentally when my PSA eventually reached 10.0 some time later, my oncologist put me back on zoladex and it worked as well as it had first time round.

You'll do the right thing Si. Informed research and an informed decision will see you through.
It does have to be a 2-way debate with your oncologist, an in Jamie you have that.
Some oncologists, like ours, actually do listen to what we think is best for us.


All the very best,


George

User
Posted 02 Jul 2016 at 13:26

Great post George

Bri

User
Posted 02 Jul 2016 at 18:11
Hi Si
I really don't blame you for taking this course, you are making great family memories regardless of whatever the unregulated PSA is doing. Anyway, let's be honest Si, you are going to do exactly what you think is right and it's your body and why not!

Wishing you all a fantastic holiday, enjoy every amazing minute of it.

Lots of love
Devonmaid xxx
User
Posted 04 Jul 2016 at 19:52
Si Superman,
Just wanted to pop in and say I get ya
I have thought of a hundred other ways to say it .
But it's quite simple
I get Ya
Do you want to delay treatment for as long as possible , absolutely
I get Ya
Do you want to be a normal Dad for as long as you can, absolutely
I get Ya
I have every faith in you my friend to make all of the right decisions when they need to be made.
Have a great summer ,
Fosters versus Tumeric what a major Cock up you did there. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
Love ya and I get Ya.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Aug 2016 at 13:04
Thanks for all your replys really mean a lot
Just back from a great two weeks in Majorca jet skiing and banana boats are great fun πŸ˜€
So the cancer thing needs addressing psa results for the last 8 weeks 0.09. 0.184. 0.21 and today 0.67

My meeting with Jamie before my holidays was quite interesting with him insisting I should restart treatment in my return from holiday but to me the results look fine I have managed nearly 9 months without treatment and still loving it and more than happy playing Russian roulette

So appointments cancelled for restarting HT and will look forward to seeing Jamie mid September πŸ˜€πŸ’•
Si xx

Oh ALP result today lowest in 4 years 35
Don't deny the diagnosis; try to defy the verdict
 
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