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Simon Story Chapter 2

User
Posted Tuesday, May 13, 2014 2:31:57 PM(UTC)

 

Simon story chapter 1

 

 

 

Don't deny the diagnosis; try to defy the verdict
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User
Posted Wednesday, May 28, 2014 12:08:52 PM(UTC)
Shocking that someone who has had the benefit of support from others and then been able to repay that ten-fold by giving hope to others who join us with dire diagnoses feels forced to remove their profile and recent posts.

PCUK, do something please to resolve people's concerns about this new forum before it is too late!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 10 times
User
Posted Thursday, October 13, 2016 5:02:53 PM(UTC)
Time for an update
So I made it to one day short of a year off of HT my PSA in the last four weeks tripled so all support and understanding I had from friends and family for staying off treatment went and to tell the truth I felt totally ambushed and pressurised to go back on treatment
Still pretty angry with myself but four weeks ago restarted zolodex didn't bother with the casadex much to Jamie's annoyance but he was expecting a spike in PSA by just having zolodex on its own but after 4 weeks PSA went from 1.28 too 0.4 😀 So with a bit of luck I will be undetectable before my next zolodex and if that is the case I am stopping again
Hope to see a few of you at the flyer in December
Si xx
Don't deny the diagnosis; try to defy the verdict
Thanked 7 times
User
Posted Tuesday, May 13, 2014 2:53:08 PM(UTC)
A Serialisation! Looking forward to a long book with loads of chapters, maybe even a trilogy.
Thanked 6 times
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User
Posted Tuesday, May 13, 2014 2:53:08 PM(UTC)
A Serialisation! Looking forward to a long book with loads of chapters, maybe even a trilogy.
Thanked 6 times
User
Posted Tuesday, May 13, 2014 3:41:52 PM(UTC)
Hi Si,
Good to see you have moved across successfully although not sure you are in the right place....."Dying from Prostate Cancer" indeed.
I reckon you've got more chance of getting run over by a bus, especially after your recent good news.
Seriously I hope all continues to go well, and despite the main heading remember:-
Life is for living
Barry ((alias Barrington )
User
Posted Tuesday, May 13, 2014 4:41:58 PM(UTC)
Don't deny the diagnosis; try to defy the verdict

Why have you deleted your strap line Simon? It's inspiring.

dave
User
Posted Tuesday, May 13, 2014 4:56:50 PM(UTC)

Bugger well spotted Dave, i am off to find it

 

See you at Leicester ??????????

Don't deny the diagnosis; try to defy the verdict
User
Posted Tuesday, May 13, 2014 4:56:52 PM(UTC)
Agree with Paul. I think this will be a loooooonnnngggg thread

Bri
User
Posted Tuesday, May 13, 2014 5:01:01 PM(UTC)

May move our thread to keep you company !

Love, Fiona.

User
Posted Tuesday, May 13, 2014 8:03:13 PM(UTC)

Like Fiona I have also thought of joining you Si. Just to keep you company but.

A . I thought it might get a bit crowded.

B. I wouldn't have a clue how to do it.

I am still trying to fix the avatar.

Good luck for results.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted Tuesday, May 13, 2014 8:22:48 PM(UTC)

Originally Posted by: Online Community Member
A Serialisation! Looking forward to a long book with loads of chapters, maybe even a trilogy.

 

Same here.

User
Posted Wednesday, May 14, 2014 4:15:18 PM(UTC)
Hi Si -- I'm going to lock your thread in the archive so it's still visible but people have to come here to reply, so the conversation won't be split in two. I'll post a link there to the new thread before I do. If you don't want that just let me know and I'll unlock it.

Best,
Sadie
User
Posted Wednesday, May 14, 2014 8:45:19 PM(UTC)
Someone in his 40's eh, what do ya reckon he was after Si.
Great news though mate, if I dint have such an early start I'd raise a few for you. Maybe tomorrow :)

Bri
User
Posted Wednesday, May 14, 2014 10:10:05 PM(UTC)

Si, we want some of your action .. how did you start Chapter 2 , maybe Sadie could move our Mick's day  of reckoning and we could rename it to "every day counts" 

Your scans continue to defy this horrid disease it is so good to see that someone who has such an awful time at the start is still giving PCa the two finger salute, you really are Si superman and long may you continue to be #1 visitor. Will be great to see you on Friday and celebrate your amazing year of Abbitabs success with a St Barnabas Capaccino at least it is delivered by a machine and not Hitlers daughter.!!

xxxx

M & M

Thanked 1 time
User
Posted Thursday, May 15, 2014 9:42:54 PM(UTC)

Hi Si,

So you are still on the dark side, you might be Superman but you are a stubborn old mule. -Or maybe that is me just not wanting you to be here.

Still trying to resize pic for my avatar and it is still saying exceeding 2mg or something like that. May have to email for help.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted Thursday, May 15, 2014 10:46:13 PM(UTC)
Great news Si. This is a great fight back long may it last!
User
Posted Friday, May 16, 2014 10:50:57 PM(UTC)

wonderful to see you today #1 visitor, Mick was really much more perky after your visit. He thinks your blood results, scans etc are awesome and so do I , a walking miracle if ever there was one.

Going to try and do a new thread fro us and link it to the old one, running out of imagination for the title though.

Will chat with Julie this weekend about about photos and possibilities for a Leicester day pass.

 

Love you and love to the girls (including Ness of course)

xxx

User
Posted Sunday, May 18, 2014 7:07:33 AM(UTC)
Absolutely delighted by your results Si, I continue to be amazed by how this disease works, you hear those words Gleason 10 and think it's game over, well we have some evidence between us that this isn't so.

So looking forward to meeting you at Leicester, our miracle man indeed.

Lots of love
Allison
User
Posted Tuesday, May 27, 2014 10:55:43 PM(UTC)
????????????

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


User
Posted Tuesday, May 27, 2014 11:15:07 PM(UTC)

This sort of stuff scares me why is all his post been edited ??? why has Si removed his profile ???

I've been coughing up blood today ... i know I'm not in a good way ... but i worry about other people

User
Posted Wednesday, May 28, 2014 9:32:09 AM(UTC)

Hi All,

To save Ness from my constant moaning, and my obvious lack of computer skills, i am going to take a break from the forum

Best wishes to anyone with upcoming treatment.

Hope to see you all at Leicester

Si xx

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted Wednesday, May 28, 2014 12:08:52 PM(UTC)
Shocking that someone who has had the benefit of support from others and then been able to repay that ten-fold by giving hope to others who join us with dire diagnoses feels forced to remove their profile and recent posts.

PCUK, do something please to resolve people's concerns about this new forum before it is too late!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 10 times
User
Posted Wednesday, May 28, 2014 2:19:05 PM(UTC)

Si and Ness

I suppose if you are not here you will not see what I post .... You are both fighters, fellow battle comrades and the best support anyone could ever hope to find. You give Cancer the biggest kick up the backside but you feel challenged by a computer forum ...come on get with the program help all of us to keep pressing the forum designers to make things more 'Giffer' friendly and to link our old threads to the new forum. 

As you know I am a lady who is not for turning (forgive the use of the Late Maggie's phrase)

Sadie et al at PCUK ...please listen to us all and work with us to make things better it would be tragic if the long term contributors who have a wealth of support and knowledge to give others abandon ship

Mo

Thanked 4 times
User
Posted Wednesday, May 28, 2014 3:54:38 PM(UTC)
As a relative newcomer, I did not use the old forum for too long, and am coping with the new design. However, it is clear that experienced members are struggling and their help and guidance would be a sad loss if, as Si, they abandon ship. I hope PCUK can assure people that concerns are being addressed, and give a time scale as to when the changes being asked for can be implemented.

Paul
Stay Calm And Carry On.
Thanked 1 time
User
Posted Wednesday, May 28, 2014 5:08:55 PM(UTC)

Hi all,

 

I don't anything more about why Si has removed recent posts or has taking a break -- we're really sorry to see anyone not use the forum if it's beneficial to them but understand that sometimes people do need a break for a number of reasons.

 

I wanted to thank everyone for bearing with us through the bugs and quirks that have been discovered since launch. I've just posted as much on other threads but I wanted to tell you all we really appreciate the feedback and are making changes.

 

Our developers are working on a whole load of fixes right now -- everything people have reported we've reported on to the developers and they have booked in time this week to fix a whole raft of issues that weren't discovered until after we went live, including: repeated logouts, conversation titles disappearing, confusing 'confirm topic' button, inability to delete own posts, and more -- some of this has already been fixed.

 

We're also going to be adding the list of all topic areas back to the Community Home page, so it's on the first page you see when you log in. Some users have complained that it's harder to find their way around, and we think putting the topic areas list right on the homepage will make it feel more familiar and like the old community space in terms of getting around. 

 

Thank you to everyone who has helped with the process and to everyone who's giving feedback on the new site. Please stick with it and help us get everything right.

 

Best,

Sadie

User
Posted Wednesday, May 28, 2014 5:09:14 PM(UTC)

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User
Posted Wednesday, July 2, 2014 12:46:57 PM(UTC)

Just thought i would post my bone scan from when i was diagnosed January 2013 for anyone newly diagnosed with mets. The black bits are the cancers but 18 months on i am good, six months of chemo and currently 11 months on abiraterone, PSA and testosterone still undetectable and ALP at 40.

So even when you get a crap diagnosis don't give up

http://i1338.photobucket.com/albums/o699/siness/48f6489a-cf64-461a-9af8-d1c77e2f3f39_zps86532643.jpg

 

 

 

Si  

 

 

 

 

Don't deny the diagnosis; try to defy the verdict
Thanked 2 times
User
Posted Wednesday, July 2, 2014 1:10:41 PM(UTC)
Look at you getting all technical. Good post Si and will give hope to others.

I've sent you a private message mate

Bri
User
Posted Wednesday, July 2, 2014 4:19:59 PM(UTC)

Thanks so much for your post, gives some hope for me with Neil now having third chemo tomorrow. Am also checking ALP !

Love, Fiona.

User
Posted Wednesday, July 2, 2014 6:00:48 PM(UTC)

Hi Si,

Great to see you back posting. Fantastic news re your scores, you certainly are Si Superman but I have to say you look better with your clothes on.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted Wednesday, July 2, 2014 7:09:42 PM(UTC)
I recognized you instantly! Amazing how you managed to post that as jpgs not supposed to be allowed but this is so helpful for others. Really helpful Simon and I am so glad the dummy is back in the pram and you are back. You know how inspirational you are to others. Great stuff!
User
Posted Wednesday, July 2, 2014 8:59:39 PM(UTC)
Brilliant post Si, although I am horrified at the idea of a forum littered with photos of wounds, stitches or (God forbid) images bodily fluids, thank goodness for the blip in the system that allowed you to put up these scans. You are a walking miracle and long may you keep amazing us all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Thursday, July 3, 2014 2:06:20 AM(UTC)

Bloody hell Si you did not look like that yesterday when I had tea with you Have the Daleks got into your house or what?

Seriously though It is so good to see you posting again and such a technical and encouraging post for others with advanced PCa and extensive mets. 

Love you all loads #1 visitor Si Superman.

xxx

Mo

User
Posted Thursday, July 3, 2014 6:20:56 AM(UTC)
Can anyone advice on this ( I hope you can see the image) As you can see it's very shrivelled, When I press it it oozes something out of the end. My wife says she definitely won't put it in her mouth.
Not sure what to do

Bri
Thanked 1 time
User
Posted Thursday, July 3, 2014 8:45:41 AM(UTC)
Ha ha ha ha ha ha. Brilliant Bri, you had me going for a minute :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Thursday, July 3, 2014 8:50:08 AM(UTC)

Love it Bri , now i was going to put scan pics up after Chemo just to show how well it can work but not sure what mood Barry is in i think i have pushed it a bit doing one 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted Thursday, July 3, 2014 9:31:31 AM(UTC)

You Saucy Bu&&er Bri and before breakfast.

Yes Si before and after pics are you going to have your clothes on this time. Barry won't mind they are not holiday snaps, just you in the Buff.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted Thursday, July 3, 2014 9:56:38 AM(UTC)
I thought these were the before & after comparison! Why do you have two fronts and two backs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Thursday, July 3, 2014 10:04:28 AM(UTC)
Si go ahead and post i am sure Barry will not mind at all he would more than likely encourage you.
Xxx
Mo
User
Posted Thursday, July 3, 2014 10:04:44 AM(UTC)

So here are my scans taken in August after chemo (last ones promise) and if there is one bit of advice i would give anyone starting out on this Journey is pick a good oncologist, we spend months picking a new house spending endless weekends viewing properties if we want a new car we don't have the first one we look at, but get diagnosed with cancer and we take the first oncologist that comes along and believe me like most professions there is some right rubbish out there.

They say that we should not name medical people on here and i can understand that when they are a pile of s***e but i think good ones should be named to help newly diagnosed people.

 

 

http://i1338.photobucket.com/albums/o699/siness/36c8fb68-32ed-4fa8-9d0f-822a1f6aa5bb_zps0c13d344.jpg

 

PS i have managed to cross out my hospital number this time without going over my birthday just dreaming of all those JP books coming my way

Don't deny the diagnosis; try to defy the verdict
User
Posted Thursday, July 3, 2014 10:10:04 AM(UTC)
Nice one Si. I'm sure that will encourage others.

Just want to say that re my dilemma above that the Tunisian waiter explained it was a stuffed fig and was supposed to ooze when bit into :)

Bri
User
Posted Thursday, July 3, 2014 10:40:06 AM(UTC)
Simon,

Good on you for giving real hope to everyone newly diagnosed with bone mets.

And you are so right about finding a good oncologist.

If you're lucky enough to get a good guy, he can become the most important person in your life - after your missus of course!

It's a pity we can't name our 'good blokes' innit?

As for Brian and his stuffed fig?....Our Bri isn't The Messiah, he's just a 'very naughty boy'.

Typical 'Life of Brian' stuff - and I love it!


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User
Posted Thursday, July 3, 2014 11:28:43 AM(UTC)

Spot on about good oncologist. Wish Neil had our second opinion guy last June, suspect he would have had Neil straight on chemo and possibly would have bought us a lot more time. Loved the post about the stuffed fig, Bri !

Cheers Fiona.

User
Posted Thursday, July 3, 2014 11:31:23 AM(UTC)

I am so glad you said that first Lynn, re number of bodies , I am sure there is a obvious answer and Si will tell us but for now I can only assume that Si is an alien with 4 bodies.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted Thursday, July 3, 2014 11:46:51 AM(UTC)

I have no idea, with all of my scans there are 4 images, now you have mentioned it i will have to find out unless someone on here knows

 

Don't deny the diagnosis; try to defy the verdict
User
Posted Thursday, July 3, 2014 7:53:34 PM(UTC)
Si you look so Skinny you need pizza, kebabs and fosters xxx
User
Posted Thursday, July 3, 2014 8:12:16 PM(UTC)

Originally Posted by: Online Community Member

I have no idea, with all of my scans there are 4 images, now you have mentioned it i will have to find out unless someone on here knows

 

Si, good to see you back on the forum

I am guessing,  but could the second two be taken after you have contrast injected?

 

Paul

User
Posted Thursday, July 3, 2014 10:03:09 PM(UTC)
OK time I stepped in! As you all know I am very much against holiday snaps being shown but if these pictures are how you look after going on an all inclusive holiday to Outer Mongolia then all is forgiven. Seriously they do give hope to others and I can see punters trying to download them and taking them to their specialist to compare with their own scans on their next appointment. Bri, unfortunately I can't see your picture, perhaps that is fortunately, but I gather it is of a dried up fig. I am using an iPad so perhaps that is why.
Going back to the scans I think Paul is right in that the 2nd two are after the contrast has been injected. Whatever like Allister (Alathays) who has extensive mets throughout his body yet still enjoys life and continues to take part in a number of activities, your scans Si give hope to those who are worried that any metastasis is automatically the end. You have shown that that is far from the case. Prostate Cancer is a funny old game, not in the Ha Ha sense, but in the way it is so diverse and goes down so many paths, if caught early enough it can be cured, later down the line it can be controlled. I have played the game for over 15 years, I might be about to lose the battle very shortly but when I was diagnosed all those years ago, 5 years was the initial target, never dreaming that the 5 years would be trebled. So I think newcomers should look at the positives and hope that we three and so many more bring, so as always,
Life is for living
Barry ( alias Barrington )
User
Posted Thursday, July 3, 2014 10:55:12 PM(UTC)

I have moved this post to the start of a new thread.

 

Paul

Stay Calm And Carry On.
User
Posted Tuesday, July 22, 2014 5:58:42 PM(UTC)

well another month another blood test

ALP 39  

PSA less than 0.01

Testosterone less than 0.01

Another month of Abbi, happy boy

Si xx

Cant use the less than symbol if you do it will not post

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted Tuesday, July 22, 2014 6:03:57 PM(UTC)
Your abnormal you :)
Keep knocking it into touch mate

Bri
User
Posted Tuesday, July 22, 2014 6:08:20 PM(UTC)
Si, what fantastic results mate.

I'm really chuffed to read this latest update.

So you'll be on form in London on Dec 3d, huh? : )~
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