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Simon Story Chapter 2

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User
Posted 18 Aug 2016 at 13:38

It's your choice Si and right or wrong I'm with you. I've got 2 days of my Med cruise left ( sat in harbour at Lisbon 31C ) and then straight off HT aiming to get my PSA up to 5 before scans. Can't wait. Good luck and glad you had a great hol


If life gives you lemons , then make lemonade
User
Posted 18 Aug 2016 at 13:41

Great to hear you, Ness and the twins have had such a marvellous holiday, Si.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif


 


Stay as positive as you've always been. It's worked for you so far, and I don't see why it won't continue to do so in the future.


 


You can't beat gut instinct (and your always very well considered strategy) can you?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif


 


If Jamie's in a good mood with you at the next appointment, tell him we'd love to meet him again on Sat 1st July next year. It will be the 10th Anniversary of B2PCa @ The Mill.


 


I'd even bring him a load of my favourite 'Free From' Chocolate Brownies as a sweetener.


 


I love 'em. No wonder my belly is expanding. But why always the belly and nowt else?!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif


 


 


Stay well my friend,


 


 


George


 


 

B2PCa
User
Posted 18 Aug 2016 at 15:16
Si
That rise is tiny but not to be ignored, but September will come soon enough so enjoy. It's lovely to know you've had a brilliant holiday with your girls, more fantastic memories being made, may there be many more

Love
Devonmaid xxxx
User
Posted 18 Aug 2016 at 15:47
Si

As already said it is your choice and I know sometimes we think we know more about our bodies than the docs but make sure you are right and do not stress out the ladies in your life.

Thanks Chris
User
Posted 18 Aug 2016 at 16:18
Thanks guys
Chris you are so right if I was retired and the kids had all left home I may play my cards differently
But with young children and still a big kid myself things are different I do listen to Jamie promise I am sure Chris J agrees
George I have asked Jamie and he is sure he is OK to attend he was checking with the boss indoors and will confirm when I see him next months
Allison hope you are both enjoying Devon
Lots of love to all
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Aug 2016 at 17:20
Si
we have aleady chatted so you know my view is that this is your Cancer and your decisions should be respected. I understand exactly what you are saying ... technically you will get a level of PSA even if your cancer isnt terribly active, you still have a prostate and other men of your age would often have a higher reading than you and be considered ok. Your ALP is really low so that should indicate that bone mets are not very active if at all.
Your next scans will hopefully reassure you that although your PSA is rising your playing Russian roulette but with more chambers empty than loaded.
The medics will see that the rate has trebled in a month and if that happens again and again then the figures will begin to look more scary.
If you feel good, have had no more erratic heartbeats and are confident in your decisions then who can argue with you?
I'm certain Jamie will be a whole new ball game though. Im surprised he hasn't asked you to sign a non compliance order!

I suppose the proof of the pudding will be how rapidly your PSA decreases when you do restart HT. I still think you have some alien gene that is looking after you (Fosters lager gene maybe?)

Might see you and the girls in just over a week's time
xxxxx
Mo
User
Posted 18 Aug 2016 at 17:36

Welcome back Si. Sounds like you had a brill time in Mallorca.
I no you will do what you will with your treatment path. It should be an interesting appointment with Jamie in September

Bri

User
Posted 18 Aug 2016 at 19:35

Your doubling time is crap - poor Jamie.

What is your long game though Si - you need to be clear about the threshold you would accept I think. At this rate, your PSA could be around 2.5 by mid-September .... Russian roulette is fine but I prefer to have a fully risk-assessed plan in place and I am quite busy in September so need pre-warning if I am to be called upon to defend any of you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Aug 2016 at 10:01
Hi Si

As Lyn rightly says keep an eye on the PSA, as a doubling time of approx 3 weeks can easily take off as I am sure you already know. I don't know if you are aware but Nottingham have just had installed a Elekta Versa HD linear accelerator machine which I was treated with at Birmingham that seems to have been successful in eliminating the two bone mets in my pelvis and will be having another go at a met in a few weeks time that has now appeared in one of my ribs. If you need any info let me know.

All the best

Roy
User
Posted 19 Aug 2016 at 22:45
Oh my Si Superman,
Firstly a visit from you and those two gorgeous girls is always welcome ( bring on the puppy cuddles) 🐶 . OK so re results this is the first time in a long long time from one old timer to another that you have got my collies wobbling 🍒yes I want to bash you round the head with a can of Fosters and a cricket bat , I am sure Jamie would like to do the same. Do I understand where you are coming from Absolutly as I have said many times ! I Get Ya . I totally understand why you are holding out on HT . So the conundrum is the S and T twin syndrome 🖖🏿🤘obviously you haven't tried the turmeric affect yet so that is still in the bag .
Realy intrigued by Roy's E V HD Accelerator ( I think Trevor has one of those in the garage) only joking Roy and I will be pm Ing you to learn more.
So looking forward to seeing you those gawjus girls and SS
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Aug 2016 at 03:45
Hi Si, I have only known you less than a couple of years but in that time it is clear that you know in your mind what you are happy about and not happy about when it comes to treatment. Ultimately whatever happens will be have influenced by your actions good or bad and as such I think that is the kind of guy you are as only you will be able to look back at yourself in time to come and either kick yourself or pat yourself on the back. I admire your courage.
Got a go now as off to run a 33 mile race in Andover! Take care, no regrets mate.
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 Aug 2016 at 18:33
Hi Julie I have sent you a message

Roy
User
Posted 21 Aug 2016 at 16:01

Just caught this latest news. You are a brave man Si I would not have the confidence to go against an oncologist like Jamie. But as others have said it is your body. But you must watch the signs very carefully, own goals in this battle are not easy to recover from. I have my appointment on Tuesday and hoping I can continue on the steroid regime but if it's time for enzo I will go won that route. Thinking of you all.

User
Posted 02 Sep 2016 at 08:41

Hi Si, I missed you at the Mill, I understand you could only make the Friday night.


 


My word you are brave man and a single-minded man. I don't know what to say but I agree with your actions and especially the balls to the PCa I am going to have a cracking holiday with my girls. However I also agree with the concerns of your experienced and well-informed friends on here. On top of that you have Jamie Mills as your consultant. You're in good company. Keep strong and keep going.


 


Send my love to Ness. I'll see you at the Flyer in December.


 


Gary

User
Posted 13 Oct 2016 at 17:02
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
User
Posted 13 Oct 2016 at 17:34
Si
that's brilliant news that your PSA is halving quicker than it was doubling and with only Zoladex too. I bet Jamie is worried what he will say at your next get together. He might open with "OK looks like Kryptonite really does work?"

In all seriousness friends and family were obviously all just worried and wanted you to do what the medical experts advised. Those that know you best will have been quietly relieved that you did. Now that this has been such a great turn around they will be even more acutely aware that you will do what is best for you in your own minds eye.

I am just really happy that you are looking and sounding so very well despite everything.

all my very best wishes and a big hug to you and all yours
xxx
Mo
User
Posted 13 Oct 2016 at 17:45
Oh Superman,
Still defying the verdict😉 And doing it in your own way in your own style . I have got to give it to you , you are one heck of a guy. Bring on the Fosters.
Loads of love
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Oct 2016 at 19:35

Fantastic news Si, one zoladex jab a year sounds fine to me!

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 13 Oct 2016 at 20:31

Well done Si,
Long may it continue

********

We can't control the winds - but we can adjust our sails
User
Posted 13 Oct 2016 at 21:19

Great to hear the HT is doing its stuff Si. I'm working on them at work so with a lot of luck I may get to have a few lambrini's with you in London. If I do we can celebrate the four year mark since we got dx 🍻

I'll let you know

Bri

 
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