Simon Story Chapter 2

User

Posted 09 Feb 2015 at 14:51

You have a good bloke in Jamie, he certainly seems to be looking after you, I will second Mo's beads for Thursday. (well prayers anyway!)

Chris.

PS. we still haven't said thank you to You and Mo for organising Newark, so THANK YOU........

User

Posted 09 Feb 2015 at 18:27

Glad to hear you didn't let the drinking side down on Saturday.

So you've gone all intermittent if only for a short time.

You've got a good man in your corner with Jamie and I am sure he will come up with something that appeals to you although you should give some consideration to a compromise if you are not totally enthralled.

The bloods and scans are good so thankfully you are starting from a reasonable point...be interesting to hear why the radium is not suitable at the moment.

As Mo says you are an inspiration to us all. You always tell it as it is and always there for others.

Let us know what happens at the consultation

Bri

User

Posted 09 Feb 2015 at 20:06

Quote from Mo
" You are a true inspiration to a lot of people here (even if your responses seem to be from a very select group of followers, there are many who read and say nothing) "

Well I'm one of those who read and shake my head in wonder but don't reply, so this time I will.

Actually, Si, I don't know what to say now. You mean a lot to many people. Your courage and attitude are, as the others have said, inspirational.

Good luck for Thursday

We can't control the winds - but we can adjust our sails

User

Posted 09 Feb 2015 at 20:10

Hi Si
Sorry to hear that things are never easy for you at the moment. You are inspirational to newbies like me as you fight everything and challenge. I see the consultants with questions that get responses but always go along with what they say, how on earth do you decide when to stick or twist? I hope all goes well, unfortunately I can't go to the rearranged Cambridge v afc match as I have chemo that day, probably will avoid me watching an embarrassing defeat anyway! Look forward to the next drink session as my wife can't have more than one birthday in a year!!! Stay strong my friend guys like me need to see you post, 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 09 Feb 2015 at 20:38

Hi Si, sorry for the delay in relying, l checked a few times but it kept looking like my post was still the last one ... I hadn't clicked things had moved on to page 5!

Wow, what a stressful time you've had. It must be very unsettling. I wonder if abbi is something that you could alternate with (as in periods on/off it like they do sometimes with zoladex?). Not worth it if it's too risky for the heart obviously but it's worked so well up to now... Anyway, Hope that Jamie has some good ideas and that you can work out a plan you are both happy with. It would be great if you could have a break from treatment. You sure deserve one.

Very kind of you to invite us on Saturday, it would have been great to meet you, and the rest of the gang. Unfortunately I'm in London & I've only just read your post so looks like we missed it! Hope you had a lovely afternoon.

You were right, Dad saw one of Jamie's team last week. No news really. Psa up but they didn't suggest changing anything so it's back again in 6 months.

Good luck for your appointment. I'll be thinking of you and will keep checking for updates.

X

User

Posted 09 Feb 2015 at 21:21

So am I one of the select fewhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

NEVER LAUGH AT A LIVE DRAGON

User

Posted 10 Feb 2015 at 18:26

Si I know that you will make the right choice for you as you always have in your very own unique style after all that's why you are Si Superman

I know that you don't want to go back down the chemo route just yet . I have every confidence that between you and Jamie you will find a compromise on Thur. I will be thinking of you Ness and the girls on Thur.

Remember that blanket that we shared in what seems like a hundred years ago well I still have half if you want it.

I did read that Radium 223 had a manufacturing issue, so I am not sure if this is the problem.

BFN

Julie X

ps puppy pics are on the way for the girls

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Feb 2015 at 00:02

I know that the heart business and ending of abby-tabby is not exactly what you dreamed of but it struck me as I read your update how wonderful this bit is

"Bloods are still good, PSA & testosterone all undetectable, bone scan showed no progression"

I guess the Gods are still looking out for you my friend - take heart x

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

User

Posted 12 Feb 2015 at 13:09

First appointment done with the heart man, he is happy with how things are now. Letter has been sent to my GP to issue a prescription for tablets if it happens again.

He will not discharge me, as he said i will see you again when your oncologist buggers you up again.

Results from bloods today, ALP 36, PSA <0.01, Testosterone <0.01.

Appointment with Jamie has been brought forward an hour so now 6.50pm tonight.

Si xx

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

User

Posted 12 Feb 2015 at 13:56

Si
one down and one to go, make sure you are on your best behaviour for Jamie if you need physical assistance my boxercise class was awesome yesterday, think I am going to become a middle aged female cage fighter LOL
will ring later or tomorrow morning.
xx
Mo

User

Posted 12 Feb 2015 at 14:19

Hi Si

I have been following your recent postings and see you have moved on from Abiraterone and got a heart "blip" under control.
Your numbers look good so I hope you have a good meeting with Jamie tonight on what to do next.

Best regards
Alan

User

Posted 12 Feb 2015 at 15:45

Good news so far, keep it going for later. Watch out for Mo she sounds ready to take on anyone that gets in her way.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Feb 2015 at 19:32

Those blood tests are very enviable...long may they stay that way

Hope the consultation with Jamie has gone well and that the air wasn't too blue

Speak soon

Bri

User

Posted 12 Feb 2015 at 21:23

Good news so far, Si. Got fingers crossed re the Jamie appointment. Hope it was positive. *

User

Posted 12 Feb 2015 at 22:33

Well long day and i think i am very happy with the result.

This must be the nearest i will ever come to active surveillance, just zoladex and nothing else.

2nd journey with Chemo is now at the back of the queue, will continue with zoladex until progression then move on to Radium 223 and Enzalutamide together, hopefully a long way off.

Jamie sends his best and looks forward to seeing you at Leicester, Bri 45 minutes booked with Jamie for you at the end http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Happy boy tonight

Si xx

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

User

Posted 12 Feb 2015 at 22:52

WOW What a day Si, I am so pleased for you really good results . Just what the Dr ordered. It is strange though that you and Trevor are now just on the Zoladex together. (twins) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Feb 2015 at 23:04

Fantastic! So happy for you, what a result. Thanks for updating us, been thinking about you all day & spent all evening checking for news ... Can't stop smiling now! Brilliant news *

User

Posted 12 Feb 2015 at 23:05

Good news for you Simon.

dave

User

Posted 12 Feb 2015 at 23:08

Well done Simon, long may it continue.

Chris.

User

Posted 12 Feb 2015 at 23:43

Interesting outcome. Hope the good results continue to roll in and if not you do have a good Plan B! Pleased for you Si!

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