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Simon Story Chapter 2

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

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
 
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