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Simon Story Chapter 2

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User
Posted 20 Feb 2015 at 19:38

Hi Si,


Just hoping that you have had a better day today, the cuddle blanket and ride on are in the post, it took awhile it was a bit tricky getting it apart and into carrier bags ready to post but I managed it.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Hang on I have just reread what you said OH POOH, STRAP ON NOT RIDE ON. BLOOMIN HECK.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif OK so strap on to follow I will make it special delivery.


BFN


Julie X and Twin X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Feb 2015 at 20:55

Hello Si,

I hope you don't mind me joining your fan club. I have been following your adventures with cardiac issues, as well as dealing with the various changes of medication and breaks from meds...as part of giving prostate cancer a hearty 'v' sign!

I imagine there are good days and bad days. Its OK to feel rubbish sometimes...even Superman had low kryptonite spells.

It seems to me that you are a likeable guy, with a tenacious spirit, and lots of friends. Thanks for being so open and honest about what is going on for you...and I look forward to catching up with how you are doing....

Very warm wishes

Sue

Edited by member 20 Feb 2015 at 20:58  | Reason: Not specified

User
Posted 20 Feb 2015 at 21:16

How many people at the Curry Table of Lerve so far?

Hope you all have a good weekend.

dave

User
Posted 21 Feb 2015 at 23:47

Si,


Its all gone tit's up delivering the ride on, apparently it won't fit in your letter box.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


BFN


JULIE X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Feb 2015 at 00:13
Hah Julie
bad news neither would the strap on !
xx
Mo
User
Posted 22 Feb 2015 at 01:18

I have just spluttered tea across my laptop #!&8*??%£/^

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2015 at 15:17
The first verse of a ditty for our friend Si ...by Mo


Trevor's twin brother is usually calld Si
we had a little plan soul sister julie and I
we plotted on faebook and planned by text
on how that ride on would get to you next
we decided the leg strap had to come first
our plans went awry so we both swore and cursed
Julie had taken the big beast to bits
then she had to utter that naughty word Tits
I laughed so hard I let go of the strap
it pinged off up North and caused a great mishap
it hit Lyn who spluttered and banjaxed her tablet
when she heard that your letterbox just wouldn't have it
So now we are all firmly back at square one
the ride on, the leg strap and tablet all gone.


Over to you for the next verse.
xxx
Mo

Edited by member 22 Feb 2015 at 15:25  | Reason: Not specified

User
Posted 22 Feb 2015 at 19:30

It was just a good deed from me and Mo


That's gone horribly wrong wouldn't you know


That leg strap it took on a life of it's own


IF only we had known


It was only just out of my pocket


When it took of like a space ship Rocket


The damage it's done is plain to see


Never mind the Tablet and spluttered tea


A man's lost his eye just South of Crew


It was last seen heading for a Town near You


So DUCK if you see it heading your way


The police said the charges we will have to pay


I've admitted the bad language , he took no heed


It was to help a friend in dire need


AH yes he said but explain this to me


There's a rider less ride on heading for Leeds


You couldn't imagine how much trouble wer'e in


The leg strap's reported over Berlin


The morale of this sorry tale is helping a friend


Could land you in Jail.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


BFN


Julie XXX


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Feb 2015 at 20:13
OMG Julie how the hell do I follow that,,,, give me 24 hours and I will try my breast (sorry freudian slip)
xx
Mo
User
Posted 23 Feb 2015 at 20:21
Spoke to Si this morning he thinks you and I are bonkers Julie

I can't imagine why

Not going to try and elaborate any more on the leg strap or the ride on in case it makes him laugh too much

xx
Mo
User
Posted 20 Mar 2015 at 14:56

Firstly Julie you are absolutely bonkers and Mo will you please stop encouraging her http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


Also Julie when i needed it most no cuddle blanket turned up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


I have not updated for a while as i was waiting until things got sorted and touch wood i think they are.


So all cancer treatment was stopped 10 weeks ago as it was thought that it caused the tachycardia that just appeared, after three changes in medication i have had no attacks for 13 days now the last one being my worse nearly 5 hours at HR 180. 


Met Jamie last night to discuss restarting treatment, but the last 6 days i have felt bloody good and quite fancied a bit longer like this so after Jamie listened to my constant moaning we agreed to postpone treatment till after my next scanshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


So bye bye abbi, steriods, denosumab and zoladex and hello immune system http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


Bloods last week was still good ALP only 38 the rest undetectable and if they stay the same in three weeks time i will carry on moaning for longer off.


Hope everyone is doing OK.


Julie, SiSi cabs has been booked to take you to the MOS


Si xx     


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Mar 2015 at 15:03

That is great news Si. I am hoping that the heart problem has gone away and hope you can stay drug free for longer. you are closely monitored so your moaning will at least be checked by some objective data! You mentioned in another thread that you may be looking at cabitexal so don't know if that is a likely next step or not! But plenty of options when you need them.

Edited by member 20 Mar 2015 at 15:04  | Reason: Not specified

User
Posted 20 Mar 2015 at 15:06

Nice to read about this latest news Simon,

Hope you all have a great weekend.

dave

User
Posted 20 Mar 2015 at 15:10

Hi Paul,


Originally Abbi was thought to be the cause of the Tachycardia, but now it was been found not guilty Jamie will start me back on them.


So far i have managed 25 months on Zoly and 19 months on Abbi, would be a shame to change a winning formula.


Hope your keeping well


Si    

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Mar 2015 at 16:23
Hi Si,

Great news. Been out of things for a while but trying to catch up.

Have a great weekend.

Steve
User
Posted 20 Mar 2015 at 17:23
Si Si

if you keep moaning Julie,Lyn and I will think you are having an organism too! Lord alone knows what Jamie will think after what he called you last time.

Seriously though I think it is great that you are having a little HT break just make sure you react quickly if there is any change. In the meantime lets hope your heart stays as steady as it has in the last 2 weeks.

It was spooky talking to you through the eclipse this morning the A34 was bizarre, cars parked all over the place and loads of telescopes, very high spec cameras that Steve and Paul would have loved, and me with my collander and piece of paper!!

I am going to miss you all so much over the next 5 weeks but of course the worldwide super highway should keep me in touch when I can.

xx
Mo
User
Posted 20 Mar 2015 at 18:08

Ahh you love me really Sihttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif , I am beaming from ear to ear for you so everything seems steady .   Does Jamie have a theory about the heart?


This  news has made my weekend, brilliant. WAY TO GO.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif THIS IS ME BEAMING.


Keep going Si Superman, have a great weekend.


BFN


Julie X


 

Edited by member 20 Mar 2015 at 18:54  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Mar 2015 at 18:45

Its so refreshing to hear you are feeling so well Si.
I love the way you take control of your treatment....and I know Jamie will be keeping a close eye on things...heres hoping the scans are good

I reckon that Peroni/Fosters diet is the bees knees

Speak soon

Bri

User
Posted 20 Mar 2015 at 20:17
Si
This is terrific news, an HT holiday, carefully managed sounds maxing, I know John would love it.

Keep an eye on it though, I'm sure with Jamie on your side all will be well.

Lots of love
Allison xxx
User
Posted 20 Mar 2015 at 20:21
So glad to read you are doing well again Si. 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 20 Mar 2015 at 21:37

A breathing space to deal with the normal (not cancer-related) challenges of life. Really pleased that you are happy and feeling well xx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Mar 2015 at 10:29
YAY! Here's to good scans and longer holiday xxx
User
Posted 22 Mar 2015 at 12:37

Simon, this is terrific news!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Enjoy your well deserved treatment 'treatment holiday', and I feel sure the break from the meds will do you the world of good.


It will give your body a rest and the time to build up again.


 


As has been said, you're being well monitored and we know you have an excellent oncologist.


 


Really looking forward to seeing you, Ness AND Sir Jamie at The Mill in a few months time.


 


All the very best,


 


 


George

B2PCa
User
Posted 22 Mar 2015 at 18:23

I shall have a beer with you tonight Si.

;-)

dave

User
Posted 26 Mar 2015 at 19:27

Well that old saying "don't count your chickens etc etc " is so true


Heart problems still not sorted, another 5 hour session on Sunday. Jamie is obviously a bit more twitchy about no cancer treatment than i am as i have an appointment for the 9th of April just three weeks since i last met him http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


CT/pet scan Monday and bloods then bone scan on the 8th.


Hope everyone is keeping well


Si


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Mar 2015 at 21:15

SHUT THE FRONT DOOR,


I hope you have seen the heart Guy Si , this is not sorting it's self have they said what is the next step ? Please don't tell me that you haven't seen anyone. It is obviously not meds related. 


Mandy is going to kill me.


BFN


Julie X


I am not finished yet I will be back. X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Mar 2015 at 21:30

Sorry to hear this Si. I know you thought you'd turned a corner.

Perhaps it's time you and the heart specialist had a conversation about the alternative treatment so this issue can finally be sidelined.

Good to hear you are having scans to keep an eye on the PCA though and good that Jamie is keeping a close eye on you.

If you want to chat or anything you know where I am

Bri

User
Posted 26 Mar 2015 at 21:50

Ho Simon,


Thought all this was sorted matey? How are you feeling though, is what matters?


Will see you at the Run Day, I hope?


In the meantime, I shall have a beer with you tonight!


atb


dave

Edited by member 27 Mar 2015 at 08:12  | Reason: Not specified

User
Posted 26 Mar 2015 at 21:59
Si just look after yourself mate, you know in your heart (no pun intended) what to do. 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 26 Mar 2015 at 22:05

Thanks for your comments.


Dave i will defiantly be at the color run and look forward to a few beers and Mandy's great BBQ


At the moment a feel really great except when a get a tachycardia then i am wiped out for the day, i will give the new medication another couple of week and if i am still getting them then i will be pushing for the op.


Julie the girls are so excited to meet all the dogs, and you and Trevorhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif let me know what days best, you can see my scan dates


Si xx 


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Mar 2015 at 22:17

Si,

Just caught up with the latest I statement. Sorry to hear this you have enough on your plate. It does not appear to be responding so maybe need a surgical solution. Get well Si. Thinking of you.

User
Posted 26 Mar 2015 at 23:41

Hi Si,


Sorry you're still having heart problems.  I know what a nuisance it can be.  You just don't want anything else on top of dealing with cancer.


Hope things are resolved soon for you.


Take care,


Steve

User
Posted 27 Mar 2015 at 03:35
Ok so here I am middle of the night in los Angeles minor panic that my lovely friend is going through this horrible carp and I am not there for him. However I have faith in all the Newark gang to do the right thing.
Si I am rooting for you
Xxx
User
Posted 10 Apr 2015 at 23:35

How did yesterday go Si?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2015 at 23:42

Hi Si,

had a beer for you this evening.

Tasted sweet.

atb dave

User
Posted 11 Apr 2015 at 08:35

Sorry for the late update, Easter holidays young kids and great weather.


So 12 weeks with no treatment and the bloods last week, PSA and testosterone undetectable and ALP 42. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif No tachycardia's for three weeks so i think they have the meds right at last.


So at the moment i feel the best i have since i was diagnosed and this now makes for a few difficult decisions.


CT Pet scan last Thursday and Bone scan and SPECT CT scan this Wednesday and Jamie Thursday night, well after a great day on Thursday at Alton towers we arrived just in time for the appointment, a bit mucky after to many trips on the water flume but a happy family.


CT PET scan picked up a couple of dodgy lymph adjacent to the splenic flexure but the jury is still out.


Bone scan is unremarkable (love that word) but activity in L5, and right hip.


SPECT CT activity in some of the sclerotic metastases but also some shrinkage http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


So with all the treatment lined up in front of Jamie, Zoly, Abbi, Denosumab and steroids i thought bugger this we are having too much fun and feel bloody great so declined it all.


Will have another chat next month, i am sure Jamie was fine with it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Another full week of activities planned for the last week of the girls holidays .


Cant quite get my head around undetectable PSA but activity in the bone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Si xx


 


   

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Apr 2015 at 09:11

Messaged you Si but so pleased you are feeling so well. Love the fact you are in control but also know you will listen to Jamie.

Bri

User
Posted 11 Apr 2015 at 09:25

Unremarkable who ever invented that terminology , no one my friend could say you are unremarkable. So good news all round the blood results as usual are REMARKABLE.  As you say it is difficult to get your head round those blood results and bone activity . So glad that the heart issues are settling down.


So that is you and your twin sorted http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif bring on the summer.


BFN


Julie X


see you and the girls soon X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Apr 2015 at 09:49

Bring on the summer, indeed - this is great news Si although I reckon Jamie needs a couple of Valium after every appointment with you.

Re the PSA, I become more and more convinced that if they could biopsy your mets, they would not find adenocarcinoma but one of the rarer forms. Perhaps (many years in the future) you could donate your miracle body to science so that Jamie can get a proper look around in there and learn something that will help find a cure?

Did the school thing get sorted yet?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Apr 2015 at 10:33

This is such wonderful news and another drug holiday what a treat. Don't overdo the holidays though you know Jamie makes sense. Have a wonderful day basking in these results and let others ponder over the paradox of met spread and PSA. More evidence that OSA is such a complex and contradictory indicator. What with Trevor you make such a wonderful pair of successes, long may it continue.

User
Posted 11 Apr 2015 at 13:00

Si,


That's really great news.  Really pleased for you.  I think that you're planning another busy week of activities with the kids shows how well you must be feeling.  Have a great time.


Steve

Edited by member 11 Apr 2015 at 13:01  | Reason: Not specified

User
Posted 11 Apr 2015 at 13:07

more fabulous news with much more info than my sneaky preview.! i think Lyn will be checking Jamie out at MOTS he will  have progressed to a little something from Amsterdam to calm his nerves pre Si visits by then.!


can't wait to see you Tuesday for a  celebratory cuddle and cuppa.


 


xx Mo

User
Posted 11 Apr 2015 at 19:11

Remarkable! Great news!


flexi

User
Posted 11 Apr 2015 at 19:26

Many thanks for your comments really appreciate it.


Lyn, the schools appeal is penciled in for w/c 4th may.


i think i will be restarting treatment in 4 weeks time, i was hoping to go longer but with no help from my PSA i am not sure if my nerve will hold.


Mo, Jamie was fine i didn't hang around to hear his arguments for restarting treatment my mind was made up, see you Tuesday


Si x 

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Apr 2015 at 19:47

Looking and sounding good Si, long mat that continue.

cheers, with a beer to you!

dave

User
Posted 11 Apr 2015 at 22:04

Si,


 I know it is some times difficult for others without children to understand where you are coming from in delaying extra treatment and being the Dad that you want to be, I so understand this, LIFE is a balancing act when we have young children you know that I applaud your decisions . I know that when you feel the time is right you will be straight back on which ever treatment you need. 


Mo are you suggesting that Jamie is a Si Afolic OH My what has the world come too. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif I can see that he may well need a holiday but AMSTERDAM , it's full of WELL strange people. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 May 2015 at 12:47

Time for an update to keep the threat going.


After four months with no treatment and feeling bloody good Jamie spoils my fun.


Bloods two weeks ago, PSA <0.01 ALP 42 and Testosterone 1.4 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif that's your lot back on Zoly and Denosumab, no matter how much i moaned i was not leaving until i had the injections.


He agreed that i can stay off Abbi and steroids until PSA rises, i now wished i had dug my heals in http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif i mean 1.4 its not as if i was going to arrange an orgy http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Scans early July and bloods in two weeks.


Looking forward to Leicester


Si xx 


PS could someone look at my profile as it appears to have gone, or is it just my computer x  

Edited by member 20 May 2015 at 12:49  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 May 2015 at 12:55

Bloody 'ell Si,

Jamie is being a real old meanie with you isn't he?

It does seem that those results are excellent, but I'm sure he must have a very good reason for starting HT again so soon.
I mean, you ARE a walking miracle you know! He won't want any spanners in the works.


So looking forward to seeing you an Ness again at The Mill, and yes, your profile won't come up on this site today.
I get a 404 Error message.


All the very best,

George

B2PCa
User
Posted 20 May 2015 at 13:46

I~got the 404 message too Si as indeed I get on any of the long running topics.

If I click on the last one be it yours or Steve's I get the 404 and can only access the topic if I go to the second to last number and come forward. Does that make sense?

We can't control the winds - but we can adjust our sails
User
Posted 20 May 2015 at 13:47
Blimey Si you broke the forum. Your profile is so unique and amazing it is being kept a secret.

I know you are mad with Jamie but he is clearly determined to let you know who is the Oncologist here!! You have an elevated testosterone (admittedly only a teeny bit) and that must have been enough for him to make that judgement.
You might be the first ever advanced mets patient to have intermittent HT. I think Jamie wants to see what happens if you go back on Abiraterone too.

Looking forward to Leicester too.
See you May 31 on my way back North. Xxx
Mo
 
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