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Chris J's Journey

User
Posted 28 Jun 2018 at 17:17

Good luck for tomorrow Chris.

Roy

User
Posted 28 Jun 2018 at 19:09
All the very best wishes for tomorrow from me Chris

Cheers

Bill

User
Posted 29 Jun 2018 at 14:14
Thanks for kind messages. Awfully stressful day again as you all know for yourselves. Yes PSA raised to 38 but all other extensive bloods clear. He asked how I was and I told him physically ok but emotionally a wreck.

He knows my bipolar history and my wishes for QOL above all else. He can still only offer RT and we know I have margins on my bladder , but we still agree the maths show it’s unlikely to be cure. And we know I desperately don’t want it anyway , and can’t face the potential risks. Given my melt-downs caused by all this he his happy to leave me six months to live love travel and basically enjoy recovery from surgery to the full. Then more scans and bloods again.

I expect opinion will be wide ranged on here but it’s my choice now. Am I mad , brave , weak , tired , scared , nervous , ignorant, nonchalant?? Yes all of those in equal measures.

Have a good weekend all in the lovely sun xx

User
Posted 29 Jun 2018 at 14:40

Hi Chris, I’m so pleased to read all your other blood markers are good.

That will be a massive relief.

As you say the decision is yours And RT is unlikely to provide a cure. It can slow things down a bit though, but QOL isn’t fantastic and since you want that above all else then who am I to try and discourage you. 

You will know I have opted to throw everything at this monster having had surgery in 2015, HT since end 2016 and salvage radiotherapy last spring. I won’t know whether this has worked until I come off HT early next year.

If it hasn’t then I will have dealt with a whole range of side effects that haven’t been necessary.

It’s such a difficult choice. I would still probably throw more at it if I had to but have to admit I would be thinking very carefully about any decision on further treatment.

When are you being scanned again?

Meantime enjoy the fantastic weather and your good QOL.

Best wishes, Ian.

 

Ido4

User
Posted 29 Jun 2018 at 14:52
Hi Ian

End of December will be CT and Bone scans again. At least PSA didn’t double this time !! With the help of PCUK nurses and advice , and taking into account pre-op psa , post-op psa , G9 , doubling time , lymph spread etc , that SRT was highly unlikely to be cure. I think it was 18% chance actually. Good luck and I admire everyone on here whatever their decisions. I hope your treatment works

User
Posted 29 Jun 2018 at 16:57
Chris

It seems about the best results you could realistically have hoped for. I totally understand your conviction in sticking to your QOL first philosophy and admire you for it. Thanks for sharing your journey and previous advice and opinions.

I hope you enjoy the next six months, get good results again, enjoy the next six months, get good results, enjoy the next six months, etc. etc. You know what Im saying.

All the best of luck to you

Cheers

Bill

User
Posted 29 Jun 2018 at 17:33

HI Chris

Good to see that the results were better than you anticipated and that you now have a six month 'break'. 

I hope that you will just enjoy the nice weather and be able to put the PCa on the back burner for a few months so that you get to enjoy the QOL that all your efforts are aimed at.

All the best

Kevan 

User
Posted 29 Jun 2018 at 18:30
Chris

You're doing very well of making the best of life you can from current circumstances. Perhaps it's too much to ask Father Christmas will present you with an equally good set of results and more - but you never know.

Good luck going forward

Ray

User
Posted 29 Jun 2018 at 20:28

Your choice, Chris and your take on an illness that is out to get us. Whatever, I wish you all the best and hope that your strength of character will give you every chance to combat the illness in the future. As you say, let’s all relax and just enjoy the wonderful weather we’re all experiencing at this time.

User
Posted 29 Jun 2018 at 23:45

Good choice Chris, you are inspiational as ever..  

User
Posted 03 Jul 2018 at 09:12
Enjoy the summer Chris take care Andy
User
Posted 03 Jul 2018 at 19:10
You are doing well Chris,

A decision not to do something is still a brave decision.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 08 Jan 2019 at 13:39

CJ

Hope you get some positive answers and a plan at tomorrow's meeting with your onco.

Best wishes.

 Thanks Chris

User
Posted 08 Jan 2019 at 15:49
Thanks Chris. Been discussing at length with El today. Psa is up to 82 from 38 which was six months ago. Not sure about other bloods. Not sure I want a plan tbh. I’ve done nothing but think about it this last month. I’m desperate not to have RT , desperate not to have HT I’ve recovered so well. I know what the other option is but frankly want to be left alone. My life is good and rich in many ways , but plagued by worry and depression and stress and booze also. Being bipolar makes it impossible to reach a decision. Is it ever acceptable to refuse treatment ?? I have so far.
User
Posted 08 Jan 2019 at 16:47

I will be thinking about you tomorrow Chris. The worry leading up to these appointments is difficult especially since your psa is up to 82.

Ian

Ido4

User
Posted 08 Jan 2019 at 16:49
It's always acceptable to refuse treatment, key is that you are making an informed decision.

You are an inspiration for this site Chris so I hope you get some good news soon...

User
Posted 08 Jan 2019 at 18:31
Thinking about you tomorrow Chris. You will do what’s right for you. You are a real leader and have touched so many lives with your pioneering and willingness to share and support your experiences.

A real legend in many respects but esp for being open in a world where things are often ‘taboo’.

User
Posted 08 Jan 2019 at 19:46

Chris, will be thinking of you tomorrow.  

Ulsterman

User
Posted 08 Jan 2019 at 20:02

Chris, 

I'm not qualified to offer you any advice....but I'll be thinking of you tomorrow matey ... 
I'm sure you'll be well supported by those close to you, whatever route you take ..if any 

Best Wishes 
Luther 

User
Posted 08 Jan 2019 at 20:08
Wishing you the best clarity for making a decision you're comfortable with. And many thanks for all your input over the years so far, I'll look forward to many more.

cheers

Graham

 
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