I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error


Simon Story Chapter 2

User
Posted 28 May 2014 at 14:19

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

User
Posted 28 May 2014 at 15:54
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.
User
Posted 28 May 2014 at 17:08

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 28 May 2014 at 17:09

.

Edited by member 02 Jun 2014 at 08:20  | Reason: Not specified

User
Posted 02 Jul 2014 at 12:46

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://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


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


 


 


 


Si  


 


 


 


 

Edited by member 19 Oct 2014 at 18:26  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jul 2014 at 13:10
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 02 Jul 2014 at 16:19

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 02 Jul 2014 at 18:00

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.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jul 2014 at 19:09
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 02 Jul 2014 at 20:59
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 03 Jul 2014 at 02:06

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 03 Jul 2014 at 06:20
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
User
Posted 03 Jul 2014 at 08:45
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 03 Jul 2014 at 08:50

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 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Jul 2014 at 09:31

You Saucy Bu&&er Bri and before breakfast.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Yes Si before and after pics are you going to have your clothes on this time.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif Barry won't mind they are not holiday snaps, just you in the Buff.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jul 2014 at 09:56
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 03 Jul 2014 at 10:04
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 03 Jul 2014 at 10:04

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 shite 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 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif just dreaming of all those JP books coming my wayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Jul 2014 at 10:10
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 03 Jul 2014 at 10:40
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!


George
.
.
.
.
.
.
.
.
.
.
.
.
.
 
Forum Jump  
©2025 Prostate Cancer UK