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Simon Story Chapter 2

User
Posted 30 June 2016 12:34:26(UTC)

Enjoy a fabulous holiday Si. You, Ness and the twins deserve one.

 

I have to say I couldn't agree more with this piece in Mo's post:

 

"He has always been rational and has watched things like his scans which show no progression  his very low Alp which probably shows no significant mets activity and he always has a back up plan. So if PSA and Testosterone reach a specific level he will go back onto HT or opt for second wave of chemo or whatever Jamie suggests.
I may not always agree with him but I know him well enough now to recognise it would be futile for me to argue with him."

 

Si, I thoroughly enjoyed our long chat about this two weeks ago on the Friday night at The Mill.

I like and admire the way you think, and I'm fully confident you'll do what you know is best for you.

We're each as unique as our cancers, and you have got that nailed.

Good luck my friend. That rational thinking of yours will see you through.

 

All the very best,

 

 

George

 

 

User
Posted 02 July 2016 07:22:47(UTC)

Thank you for all your comments, we really appreciate them.

So things where never going to be as easy as holiday then see Jamie in September. Hospital rang yesterday they want to do bloods again and see Jamie on the 14th July, they are not happy with the level of increase of my PSA.

Now correct me if i am wrong but i still have a prostate, have never had RT to it so why would my PSA not rise especially as i am not having any treatment. And if they was not using a super sensitive test then my PSA would be <0.1.

I love my medical team to bits but sometimes they need to understand were my priorities lay, in August me and my girls will be Jet skiing, parascending horse riding on the beach and having fun so cancer can do one, and in September the gloves are off.

hope everyone has a good a weekend as they possibly can.

Si xx 

 

Don't deny the diagnosis; try to defy the verdict
Thanked 3 times
User
Posted 02 July 2016 07:58:32(UTC)
Si
I don't always agree with you, but here I follow your logic and sort of agree. If everything else reads well I'd go have that test, have a chat with Jamie as requested with Ness there too . Listen to his clinical assessment and then decide if you are playing Russian roulette or not.

It has to be your decision.

I wish you maximum wisdom and will chat soon.
Xxx
Mo
User
Posted 02 July 2016 08:22:31(UTC)

Good to have you back Mo, hope the holiday went well, biking in that lovely sunshine

Russian roulette no that's not me, lots of research and informed decisions

Instead of two days at hospital i could be fixing Julies picket fence. 

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 02 July 2016 10:29:45(UTC)

Si you will do what you will do and nobody can criticise you for that...just make sure you have a brill holiday

Bri

User
Posted 02 July 2016 11:49:25(UTC)

Si,

I agree with you about that PSA level. You're on no treatment, and yes, you still have a prostate.
On top of all that your scans have been so good.

In 2010 I had been lucky enough to have been able to have a break from treatment for three years.
Over that time PSA climbed slowly to 7.0 and I was summoned to see my urologist.

I only agreed to attend because my cancer nurses at that hospital had told me that he'd be offering me new scans.
Since it had been five years since the last ones (MRI, CT, bone etc) I was looking forward to seeing what had changed over those years.

It turned out to be nothing of the sort.
After telling me how lucky I was to still be here after he wrote me off in 2005, he said 'Your PSA is obviously climbing, cancer is active again. I could offer you chemo, but perhaps you'd prefer quality of life over such radical treatment".

That was the shortest appointment in my 11yrs of the PCa battle.
I was flabbergasted. Had he actually checked my notes and seen I was on no treatment?

My good outcome so far had nothing to do with his 'wisdom and judgement' (Ha!) and everything to do with my oncologist at my main cancer hospital since 2005.

I think everyone here knows my favourite word, and it took me only seconds to use it.
I told him he was talking complete bollocks and that I wouldn't bee seeing him again, stood up at left.

A month later, when I had an appointment with my oncologist and related the story, he was absolutely furious at what the urologist had said.

Incidentally when my PSA eventually reached 10.0 some time later, my oncologist put me back on zoladex and it worked as well as it had first time round.

You'll do the right thing Si. Informed research and an informed decision will see you through.
It does have to be a 2-way debate with your oncologist, an in Jamie you have that.
Some oncologists, like ours, actually do listen to what we think is best for us.


All the very best,


George

Thanked 2 times
User
Posted 02 July 2016 13:26:11(UTC)

Great post George

Bri

User
Posted 02 July 2016 18:11:39(UTC)
Hi Si
I really don't blame you for taking this course, you are making great family memories regardless of whatever the unregulated PSA is doing. Anyway, let's be honest Si, you are going to do exactly what you think is right and it's your body and why not!

Wishing you all a fantastic holiday, enjoy every amazing minute of it.

Lots of love
Devonmaid xxx
User
Posted 04 July 2016 19:52:11(UTC)
Si Superman,
Just wanted to pop in and say I get ya
I have thought of a hundred other ways to say it .
But it's quite simple
I get Ya
Do you want to delay treatment for as long as possible , absolutely
I get Ya
Do you want to be a normal Dad for as long as you can, absolutely
I get Ya
I have every faith in you my friend to make all of the right decisions when they need to be made.
Have a great summer ,
Fosters versus Tumeric what a major Cock up you did there. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
Love ya and I get Ya.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 August 2016 13:04:15(UTC)
Thanks for all your replys really mean a lot
Just back from a great two weeks in Majorca jet skiing and banana boats are great fun πŸ˜€
So the cancer thing needs addressing psa results for the last 8 weeks 0.09. 0.184. 0.21 and today 0.67

My meeting with Jamie before my holidays was quite interesting with him insisting I should restart treatment in my return from holiday but to me the results look fine I have managed nearly 9 months without treatment and still loving it and more than happy playing Russian roulette

So appointments cancelled for restarting HT and will look forward to seeing Jamie mid September πŸ˜€πŸ’•
Si xx

Oh ALP result today lowest in 4 years 35
Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 18 August 2016 13:38:03(UTC)

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 August 2016 13:41:49(UTC)

Great to hear you, Ness and the twins have had such a marvellous holiday, Si.

 

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?

 

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?!

 

 

Stay well my friend,

 

 

George

 

 

User
Posted 18 August 2016 15:16:50(UTC)
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 August 2016 15:47:56(UTC)
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 August 2016 16:18:47(UTC)
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 August 2016 17:20:14(UTC)
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 August 2016 17:36:23(UTC)

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 August 2016 19:35:57(UTC)

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 August 2016 10:01:12(UTC)
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 August 2016 22:45:34(UTC)
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 πŸ’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 πŸ––πŸΏπŸ€˜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 August 2016 03:45:30(UTC)
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
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 20 August 2016 18:33:38(UTC)
Hi Julie I have sent you a message

Roy
User
Posted 21 August 2016 16:01:09(UTC)

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 September 2016 08:41:06(UTC)

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 October 2016 17:02:53(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 πŸ˜€ 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 13 October 2016 17:34:31(UTC)
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
Thanked 3 times
User
Posted 13 October 2016 17:45:52(UTC)
Oh Superman,
Still defying the verdictπŸ˜‰ 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
Thanked 1 time
User
Posted 13 October 2016 19:35:31(UTC)

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

Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 13 October 2016 20:31:28(UTC)

Well done Si,
Long may it continue

********

We can't control the winds - but we can adjust our sails
User
Posted 13 October 2016 21:19:27(UTC)

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

User
Posted 13 October 2016 21:25:31(UTC)

Good for you Si.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 14 October 2016 01:20:46(UTC)

This is just superb news Si; I wish the research projects would all come and have a look at you as your cancer is simply like nothing else!

Lots of love to you all xxx

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


User
Posted 14 October 2016 16:38:39(UTC)

Brilliant news - great to hear!

Flexi

User
Posted 14 October 2016 17:31:24(UTC)
Si

Well done and good news, look forward to seeing you again.

Thanks Chris
User
Posted 15 October 2016 19:42:20(UTC)

Good news Si.

User
Posted 15 October 2016 20:05:22(UTC)
Couldn't just leave it there , You are Rocking it Dr Foster.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 October 2016 00:27:42(UTC)

Hi Si,

Great news, really pleased for you.

Was in my old hometown the other day, would have been good to meet for a drink.  Anyway, see you at the Flyer in December, hopefully.

Has the Advertiser moved offices?

Steve

User
Posted 07 November 2016 12:32:15(UTC)

Great stuff Si. See you in the Flyer

 

Gary

User
Posted 15 November 2016 19:15:00(UTC)
Thank you for all your comments
Latest update after restarting HT after PSA reached 1.2 after 4 weeks PSA dropped to 0.4 and my latest bloods came back at 0.11 not bad after 8 weeks of HT
So now a meeting with Jamie in two weeks to discuss stopping HT after one injection should be fun
Si xx
Don't deny the diagnosis; try to defy the verdict
User
Posted 15 November 2016 19:40:58(UTC)
I u sure there is going to be a discussion 😜 I am pretty sure Jamie talks very calmly and with great knowledge and is a very smart oncologist but and you know me guys there is always a but ( picture the scene) in walks Superman and leaves Jamie thinking WTF just happened there.πŸ™ƒ

The Upside down face is because my Si Superman you turn pca on its head and long may that continue .
Not enough wing men in life .


Absolutely love you and your gang (Ness and the girls )
Keep rocking it .
BFN
Julie X

Ps Mr email thank you Xx
NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 December 2016 10:00:47(UTC)

Just a quick update,

After being off HT for nearly a year and with my PSA rising quite quickly and the only person that thought i should stay off it a bit longer was me, i succumbed to the pressure and restarted HT.

My first injection was 8 weeks ago with my PSA at 1.2 after four weeks it was 0.4 then it went to 0.11. I met with Jamie last week and armed with these good results i was going to stop HT again and not have the December HT.

But after nearly 4 years with Jamie i believe we are beginning to understand each other, as soon as i sat down he just said great results we will stop HT wait for it to rise to 2.0 then we are going right off piste.

Best meeting ever the nurse said your eyes just lit up so with a prognosis of maybe 3 years but definitely not 4 we continue, not sure of the plan it is still under discussion.

We all get dealt a hand and it is down to us how we play it, i just choose to play it my way, and with a great Onco as my wing man.

Si xx     

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 04 December 2016 10:21:56(UTC)

Off piste? You are on the black run I think but there are a few landmarks to guide you and you are skiing with an expert x

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


User
Posted 04 December 2016 10:31:12(UTC)

Bet that stopped you in your tracks !!    

Loins girded but not needed. He obviously knows his man.

Good luck Si

We can't control the winds - but we can adjust our sails
User
Posted 04 December 2016 10:52:51(UTC)

I'm liking the style Si.
A lot.
There has to be something to make it more bearable. Take it on face to face.
Good luck




If life gives you lemons , then make lemonade
User
Posted 04 December 2016 13:27:35(UTC)

Si, I am SO CHUFFED to read this!

 

I like the plan, and your wingman Jamie is definitely on the same page as you now.

 

The Zoladex worked brilliantly for you, in such a short time, and I think it proves that sensible breaks off the treatment makes it remain effective each time you need to return.

 

Fingers crossed, I'll not need my next Zoly injection in January. After 15 months on it this time, I can't wait for my 'holiday'.

 

Great post, and a lift for us all, Si.

 

Hope to see you at The Flyer on Wednesday if you're coming.

 

 

All the very best,

 

 

George 

 

 

User
Posted 04 December 2016 21:08:11(UTC)
Top news Si and a win for Cambridge ( and AFC Wimbledon) , see you Wednesday , Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 04 December 2016 23:08:20(UTC)
So Si Superman in the words of the song !I I Did It My Way!
You most certainly have and I for one take my hat of to you. From a rocky start you have taken control and not only flown your plane into calm waters but have made a safe landing.

Your choices have never been for the faint hearted and most would have bottled out years ago , many people I know thought WTF is he doing but I have always been behind you .

It is your Cancer and you have Done It Your Way. πŸ™ƒ

Love and admire you loads. ❀️️
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 December 2016 00:24:45(UTC)
Great news Si, your a man after my own heart, I can't wait to hear the new plan, maybe utilise the new machine they have and kick its butt.

All the best

Roy
User
Posted 05 December 2016 07:48:35(UTC)
Great news, Si, long may it continue!
User
Posted 05 December 2016 09:33:10(UTC)

I'm intrigued to hear what the next plan is. Lots hope it's not for quite some time yet though.
Good to see you last week, you are looking really well

Bri

 
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