Simon Story Chapter 2

User

Posted 04 Feb 2016 at 21:25

I think you are destined to be a page 8 Man

it was posting those scan images that did it you have never been forgiven for managing to do something nobody else has. FFS I cant evenn post smileys or martian heads or anything.

results are terrific long may they continue
xx
Mo

User

Posted 04 Feb 2016 at 23:58

ha ha my magical touch has promoted you xx

User

Posted 05 Feb 2016 at 10:43

Lovely scores Si x

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

User

Posted 05 Feb 2016 at 11:32

That's fantastic Si, you truly are our superman

Love Allison xxx

User

Posted 05 Feb 2016 at 11:54

Good news for you Simon.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 06 Feb 2016 at 07:54

Keep at em Si....I bet you feel so .uch better off the meds

Bri

User

Posted 06 Feb 2016 at 09:14

Well done,Si.

Steve

User

Posted 06 Feb 2016 at 10:05

Great scores SI, be careful you will make Jamie redundant.

All the best

Roy

User

Posted 06 Feb 2016 at 10:43

Great news,

Time for another Fosters Si

Arthur

User

Posted 07 Mar 2016 at 12:02

So great, Si! x

User

Posted 04 Apr 2016 at 08:59

Time for an update;

The last 7 weeks have been manic, thanks to working for a wonderful company, the last three years i have just worked from home not doing very much, but the person looking after my accounts left and they are in a bit of a mess. So back to many nights away, lots of work but everything is now sorted.

Jamie (my onco) still not happy about my decision to stop treatment he even wrote to my GP to have a word http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif So my last Zolodex was early September, scan results last month, all good and my latest bloods where PSA <0.01 ALP 37 Testosterone <0.4, seems to me my body must have been storing up the HT.

So next appointment with Jamie is the end of the month, and this is where i have a problem. When i came off treatment Jamie asked if Ness was happy with this, oh yes said I and when i got home Ness said is Jamie happy with this, oh yes said I. well the truth is neither was happyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Well ness is coming to the next appointment and i am going to be in big trouble http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif the nurses in the cancer unit are fighting over who is doing clinic that night with Jamiehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

This might be my last post http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Apr 2016 at 09:28

As long as your choice has given you benefit, how can they chastise you? Are they okay with it all now?

You should still be flogged for telling porkies though! Your "bad".

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 04 Apr 2016 at 10:07

Si Si

fabulous results I will call you to talk about the other side of your post.

I do wonder why Jamie is not taking the opportunity to put you right under the microscope, if you are a willing patient?. There just has to be something different about your body and how it is dealing with this cancer. Some protein marker has turned itself back on or some other genomic anomoly, and it isn't Fosters either!! I know we call you Si Si Superman but you really do seem to be quite unusual.

chat in a bit
xxx
Mo

User

Posted 04 Apr 2016 at 10:08

You could claim that the HT has affected your memory perhaps? Or start talking in pseudo-Swedish and then take all your clothes off? Or fix a coat hanger to your head and claim you are from Zog?
#
#
#
#
#
#

Or you could just say you are sorry and won't do it again, and go back on the HT. What I would want to know from Jamie is whether there is any possibility that the cancer is progressing while the PSA/T/ALP lies to you. Your PCa has never behaved normally and we know that yours is a low-secreting b****r so I am just a teeny bit anxious about whether any of your tests results can be relied upon. Probably Jamie can reassure you that ALP is always a reliable indicator of mets activity? Stan didn't get ALP tests so I am not sure about that, but the falling PSA disguised the progression to liver and kidney.

Edited by member 04 Apr 2016 at 10:13 | Reason: Not specified

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

User

Posted 04 Apr 2016 at 10:17

Hi Lyn,

Just looked back on my bio and when i started chemo in Jan 13 ALP was 239 and PSA was 2 ish so when active my cancer does increase my ALP.

My CT scan last month showed no soft tissue involvement, but Jamie did say that he has had two other patients with very low PSA with extensive mets and both times it went to soft tissue.

More Fosters needed http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Apr 2016 at 10:18

I think the coat hanger idea might be best

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

User

Posted 04 Apr 2016 at 10:57

Si,

You're a 'one off'! Yours are incredible results.

If your body tells you that you're doing the right thing, then I would listen to it.

I steer well clear of giving medical advice, obviously, but there are some guys with PCa who just seem to defy all odds and have a good long spell off treatment.

Gut instinct works for me as regards when to start or stop treatment, but I do have a scan whenever I have the slightest worry about niggling pain anywhere in my body.

Long may you continue to confound!

(saying nothing about your porkies) ; )

All the very best,

George

B2PCa

User

Posted 04 Apr 2016 at 11:24

I think it is wise that you say nothing George - I suspect there are times when you haven't quite told Ian what Lynn thought or told Lynn what Ian thought :-(

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

User

Posted 04 Apr 2016 at 11:44

Lyn, I cannot tell a lie. I often mull things over (for quite a while) before I mention something to either of them.

Procrastination I suppose is the best word.
I'm seeing Onco Ian in a few weeks time and am ready for the 'Boro' fan mockery of Sunderland.AFC. ; )

B2PCa

User

Posted 04 Apr 2016 at 12:51

Sounds like time for a tin hat and a thick book down the back of your trousers Si

User

Posted 04 Apr 2016 at 14:21

Originally Posted by: Online Community Member

Time for an update

Well ness is coming to the next appointment and i am going to be in big trouble
Si xx

Si can't quite imagine Ness being angry but best of luck just in case.

Thanks Chris

User

Posted 04 Apr 2016 at 17:07

Just act dumb and say I dont know what you mean as I cannot remember

Regards
Nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 04 Apr 2016 at 20:17

Hi Si,

I am sure Ness and Jamie know what u are up to. But I am intrigued with your results and do hope they are indicative of a stalled cancer and not misleading you. Jamie will have to respond to the facts of continued good markers and maybe there is a medical explanation. Good to see you are working again but don't overdo it. I will look forward to the report from your next meeting!

User

Posted 04 Apr 2016 at 21:21

I wouldn't like to be in your shoes Si but I'm pretty sure that Ness will forgive your little deception. As for Jamie, I don't know if I can say the same but it's your body, your life, your choice and so far you have played it so well, with the support of these two wonderful people.

Lots of love
Devonmaid

User

Posted 04 Apr 2016 at 21:23

Oh my oh goodness , my friend and WingMan this may be the end of a wonderful friendship you may not come out of this alive. You are in deep Doo Doo my friend even with a sorry face and a coat hanger on your head I fear your chances of leaving this appointment with everything intact , well to say your chances are slim would probably be an exaggeration
Stay calm that is my advise, facing Jamie will be far easier than fessingup to Ness, let's face it you don't have to travel home with Jamie and he doesn't have a black belt in Origami 😉

Ok so I have given it some thought and I know that liars never prosper but option
A , I would tell Ness the appointment has been rescheduled at a time when she can't make it, obviously standing on one leg and holding your ear at the same time
B, phone Jamie in advance and offer a huge monetary incentive to keep shtum.
C, If Jamie won't be brought with money , then offer your body to medical science .😜
D, Fake a very important phone call at the moment of revelation, IE (HRH needs to speak with me with about a knighthood)😳
E, if any of the above fail I always find that blaming some on else in these circumstances is a go to response IE , Lyn, Julie, Mandy told me to do it. This way you can shift blame and make yourself look like a victim.😇.
D, Take a cardboard cut out of yourself and on the day , whilst you are hiding in my loo.🤓
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Apr 2016 at 21:53

Some of these suggestions are non-starters Julie (Jamie and Ness are too clever) but I vote B and E as my favourites and F is the most likely to succeed

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

User

Posted 04 Apr 2016 at 23:19

So Si, let's assume you make it out alive, then what. Do you keep going with nothing as recent history would indicate that is what you need now or should you start again anyway? If you are relying solely on blood scores there may be a danger that activity is or will lurk undetected so assuming you want a longer holiday and Jamie agrees then perhaps push for more frequent scans ?
Whatever the outcome of the discussion you remain a living legend and man of hope for all of us with mets.
Take care
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 05 Apr 2016 at 08:38

Great results again Si....well astounding actually. No progression on your last scan which is also great. But if you are continuing on your hormone holiday then perhaps J will agree to regular scans to keep an eye on things.

Regarding J and Ness......good luck mate..but get the beer fridge stocked

Bri

User

Posted 07 Jun 2016 at 20:38

So i am in a lovely hotel in bury St Edmond and thought it was time for me to update my thread and it bloody disappearedhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif so now here is the short versionhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Meeting with Jamie two months ago, quite a interesting meeting as my wife attended and both of them found out that neither of them agreed with me about stopping treatmenthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif but i am still refusing further treatment.

my last two blood tests my psa has increased from undetectable with a small increase each month, i have no problem with that as i still have a prostate.

All my scans done last week, bone scan no progression i get CT and SPECT scan results Thursday when i see Jamie. Things are really good at the moment and enjoying my time with no treatment but all good things will come to an end.

So until i am back from hollibops in August with the family i will stay off the treatment but one treatment that quite appeals is stay of Ht but have three cycles of chemo, Jamie knows how to get my attention

Best wishes to all

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 07 Jun 2016 at 20:59

I have no idea what you are doing, or why it is working of you, but I an glad that all is good so far.

we shall have a beer at MOTS?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 07 Jun 2016 at 21:21

Si
You and Jamie are managing your cancer impeccably, the chemo idea sounds interesting. At your age and with your young family, time off HT is valuable. Jamie is a top man, I'd take his lead and I know you will.

So pleased to read that things are going well.

Lots of love
Allison xxx

User

Posted 07 Jun 2016 at 21:27

Great to hear from you Si,
Even better to hear that you are feeling good and dare I say looking good 😍 Yes I have seen the pics on FB. Whatever it is that you are doing then keep doing it my friend..
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 08 Jun 2016 at 09:56

Si, I haven't been on here for a few days but then again I already knew about your plans!
I do like the way Jamie thinks. Chemo kicked the proverbial out of your cancer first time round and very quickly.
You are different, no doubt there at all. Looking great, feeling great and doing great.
Sat here in a garden chair, no furniture nada, just waiting for the call from solicitor to say game on.
See you for beers af MOTS
Xxxxx
Mo

User

Posted 08 Jun 2016 at 10:46

Si, it's great to read this update. You're doing more than defying the odds. you're re-writing the treatment plans along with with Jamie.

Some of us are very lucky to have an oncologist who will work with us, and your partnership with him is working wonders.

That possible short spell of chemo really got my attention. That's my way of thinking too.

So glad you got Jamie to speak at B2PCa @ The Mill On The Soar in 2014 & 2015. He was inspiring.

Seeing Mo's reply to you there about drinks at 't Mill - does this mean you ARE coming over on the Friday night to meet the gang? Hope so. It will be good to see you looking so well.

All the best,

George

B2PCa

User

Posted 08 Jun 2016 at 14:13

Si

Not sure how you get the onco to do it your way, but it sounds like it works. Hope it continues in the right direction.

Thanks Chris

User

Posted 08 Jun 2016 at 17:51

I hope the chemo will be quite soon and allows you to have a great family summer, super-Si x

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

User

Posted 08 Jun 2016 at 19:25

Enjoy the hols Si....sounds like youve got a real plan in place. Your relationship with Jamie is great and you make a great team.

Keep kicking its butt mate....catch up for a few beers soon

Bri

User

Posted 09 Jun 2016 at 16:45

Si,

Great to hear the plans are working. Be interested in your feedback after seeing Jamie. Keep going mate!

User

Posted 09 Jun 2016 at 21:08

Best wishes with whatever you choose Si. You have to balance being in control , along with Dr's orders , and family. You seem to be doing a great job so keep doing what you're doing.
Chris

Edited by member 09 Jun 2016 at 21:09 | Reason: Not specified

User

Posted 28 Jun 2016 at 18:18

Thank you for all your replys it really helps so last months psa was 0.03 so each month is increasing by .01 my scans all showed no further progression last weeks psa was 0.09
Still staying of the treatment but need to keep it in my head that my very first psa was 3.6 and it had spread everywhere

So no treatment till September after my holidays and then more discussions with Jamie at the moment we are miles apart on the next treatment but has gone to discuss with other consultants
As he said there is a fine line between thinking outside the box and recklessness
I told him Lyn will defend you
Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 28 Jun 2016 at 18:50

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 19:53

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 23:37

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 23:40

Ps do you no any one that could put up a picket fence for me 🙃

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Jun 2016 at 23:54

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 29 Jun 2016 at 00:19

Si Si ,
You no it makes sense. (What Lyn says )😐

NEVER LAUGH AT A LIVE DRAGON

User

Posted 29 Jun 2016 at 14:55

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 15:12

Good luck what ever route you choose.

Thanks Chris

User

Posted 29 Jun 2016 at 21:19

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

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 30 Jun 2016 at 00:06

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

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