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Simon Story Chapter 2

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User
Posted 23 Sep 2014 at 18:16

Great news Si, your progress remains awe inspiring. Not sure about the long term plan it has a logic to it but is it clinical sound? I am no expert but we have chatted about this before. I suppose my preference is to stay with what is working but I admire your guts and the fact you can access enzo gets over some of the problems others have experienced, so why not go for it now. It's good and glad to see you posting here again with some good news!

Edited by member 23 Sep 2014 at 18:17  | Reason: Not specified

User
Posted 23 Sep 2014 at 18:49

Hello again Si,

I like your thinking! You're in full control of your strategy.

Listen to your body, It let's you know when to change treatment, I'm sure of that.
Your results really are stunning, and this is a big turn around from the first time we met in London.

Speaking of which, looking forward to seeing you and Vanessa again in December.


All the best,


George

Edited by member 24 Sep 2014 at 17:23  | Reason: Not specified

B2PCa
User
Posted 23 Sep 2014 at 19:05

Great news!  Keep up the fight!

User
Posted 23 Sep 2014 at 21:39

That's the attitude Si http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

 

See you and Vanessa in December at the Flyer http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User
Posted 23 Sep 2014 at 23:57

Si, whatever you do, you are blazing a trail for those who will tread this path after. And having seen the photos of you on FB finishing the triathlon this weekend for charity, you are looking mighty great my friend. Congratulations xxx

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

User
Posted 24 Sep 2014 at 07:00

Well after a pretty crap night i wake to see the forum just like the old days http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

But Lyn you have made Ness day she left for work with tears running down her face, me doing a triathe tri athe that running thing she said you cant walk to Tesco three times in a day.

Oh well i have a smile on my face, Carlos please don't ring me to do a marathon with you Lyn has overdosed on the tea.

Luv Ya

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 24 Sep 2014 at 07:58

But the photos look good and who wouldn't be impressed at the idea of our very own Si holding hands with the Brownlees?

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

User
Posted 24 Sep 2014 at 08:58

now i am confused, where are these pictures.

xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 24 Sep 2014 at 11:42

Hi Paul, just spotted your question "why not go for it now ?"

The main reason being Christmas approaching and everything i do is based around my three lovely girls. not knowing how these two drugs will react together means i will not risk ruining Christmas.

i have already had approval from BUPA for both of the drugs together, so full steam ahead for January.

If it all goes horribly wrong i think Jamie will be at the Mill again this year so you can ask him why http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Also working on him to come on the forum once a month for an hour for a Q&A not sure how it would work but once he agrees then i will ask PCAUK if we can do it

See you soon mate

Si

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 24 Sep 2014 at 13:47

Si,
That last bit is an excellent idea.

Keep up the good work, it's working for you.

Chris.

PS, see you at Euston again

User
Posted 24 Sep 2014 at 16:50

Great idea SI re Q&A. That's what the group chat should be about! Let,s use the technology!

User
Posted 24 Sep 2014 at 19:02

Paul I think that is a bit cheeky saying Si is clinically unsound, mad as a March hare yes, oops sorry that wasn't what you said.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

I am going to have to check out these pics on FB, or is Lyn doing a wind up.

See you in the chat room Guys.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Sep 2014 at 12:10

About 6 weeks ago we put a posting on Facebook of my scans that are on this thread encouraging people to have a PSA test.

Well last night Vanessa received a message from a medical secretary for the oncologists at a specialist cancer hospital in oxford asking if they could use these for awareness, no problem said i but below is part of her email;

 

"I have found those scans fascinating! I work at the Churchill hospital in Oxford which is a specialist cancer and haematology hospital. I'm a medical secretary working with a team of oncologists in Breast cancer and often see progression of the disease spread into the bones but have never seen scan images like this!"

No sh*t Sherlock, really made me feel great http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Sep 2014 at 12:38
Si, when you become rich and famous will you still be my friend??

xx

Mo

User
Posted 26 Sep 2014 at 13:42

WOW Si, so you are going to be famous and just for getting your kit off.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif You need to get those bones insured.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Sep 2014 at 15:03

You see Si?

 

Every cloud has a silver lining.

 

The whole nation could soon be aware of your 'amazingness'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

We can't keep it to ourselves anymore.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

What a great story mate.

 

George

B2PCa
User
Posted 09 Oct 2014 at 11:14

Good afternoon Si! Just checking in to see how you're doing and as usual delighted to hear your amazingness is continuing! So pleased things are going well, those are fab results. You and Jamie are certainly a winning team. Great that you can have both treatments too. Wishing you, Ness and the girls a wonderful Xmas. xxx

User
Posted 02 Nov 2014 at 08:15

Time for a quick update,

Bloods are all still good ALP 39, PSA <0.01, Testosterone <0.01.

Bone scan last week was a bit strange, no Dr O'Connor present but he will be reporting on it, instead i had Dr mute and Dr stonewall.

Everything went as normal full scan then a good look round the pelvis as this is the most diseased area, about to go and called back for another scan. Any comments from the doctors as to why, oh no.

Finished that scan and called back to go through again and then a CT scan, still no comment from the doctors there, where is Dr O'Connor when you need him.

Anyway call from Jamie on Friday a very small progression in the pelvis and another area that three doctors could not identify, so there is something, but they don't know what, great.

My guess is it might be my libido trying to find its way back http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

CT / PET scan in a couple of weeks so i can have a chat and maybe a look at it.

But stay on Abbi till then.

Si  

Edited by member 02 Nov 2014 at 08:17  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Nov 2014 at 08:30

Hi Si

Bloods still indicating in the main that things are still good. Who was the third Doctor? Dr Noidea

Jamie is on the ball so will clarify everything. The old meds are still working mate

I reckon them docs saw your PSA and bone scans and had a discussion along the lines of "I thought this guy had advanced PCA. ...yep he definitely walked in.....is it us or has someone give us the wrong file.....get him back in for another scan, we best find something or were for the high jump"

Lol....see you soon mate

Bri

Edited by member 02 Nov 2014 at 08:32  | Reason: Not specified

User
Posted 02 Nov 2014 at 09:06
Bri, you said something very similar to me when I had a chat with Si about this on the day.

Si The blood results are brilliant and small progression in one area is better than can normally be expected for a Man with the number and extent of mets you had at diagnosis almost 2 years ago ....I just realised it really is almost 2 years, that does it when we meet at the flyer it must be cancerversary drinks!!

As for the unidentified thing well we could start a whole new conversation on what it might be I think

they have discovered the implant the aliens put in to turn you into Si Superman when they briefly abducted you in January 2013.

see you all soon

xxx

Mandy Mo

Edited by member 02 Nov 2014 at 09:07  | Reason: Not specified

 
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