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That was not in the plan.

User
Posted 28 Apr 2018 at 16:48

 


"Congratulations to those who are well on the road to full remission.

Commiserations to those who are still battling with this awful disease or its adverse effects and thanks to all the loved ones who have supported thier men during thier journeys.

Condolences to the loved ones of the men who sadly did not make it".


 


Chris, what a poignant, humbling message that is.


It has special meaning for everyone on here.


Here you are, four years on, after years of everything going wrong with your treatment, and yet you can type those words which say it all!


 


May you now look forward to things going right for you at last.


Nobody I know could have fought against your particular and constant problems with such strength as you have.


 


I salute you, and I pray that the day will come when we can all share good news from you.


 


Stay strong my friend,


 


 


George

User
Posted 03 May 2018 at 20:50

Hi Chris, so sorry to hear all the trouble you've had, I will stop complaining about the little i have gone through. I also suffered bladder retention and I know how painful that is, I had to be re-catheterized and ended up getting a water infection that was sorted fairly quickly with antibiotics. But my God what you have had to go through is just unbelievable.


Stay strong and I hope that you win your battle.

User
Posted 03 May 2018 at 21:07
Ants

Welcome to the site, complain all you like, that is part of the reason for the site. Our individual problems great or small are important to ourselves. I joined another site that supports people with radiation damage, my problems pale into insignificance when I read some of thier stories.

Hope your recovery goes well.

Thanks Chris
User
Posted 31 Jul 2018 at 21:21

I am now 14 months post SRT, just had my latest PSA result, it has gone down from 0.06 to 0.05 in the last three months. In view of the recent discussions about testing and assuming my maths is correct, that is a reduction of 0.00000000001 of a gram per /mil. Makes you wonder how such a minute amount (the 0.05) can even be detected.


The destruction of the bladder is almost complete and I see my consultant tomorrow.


Thanks Chris

Edited by member 01 Aug 2018 at 07:18  | Reason: Not specified

User
Posted 31 Jul 2018 at 22:16
As per recent discussions , that result has zero value potentially. Unfortunately!!
Quite understandably I’m seeing a sad Colwick Chris and not your old self which makes me quite unhappy too. You’ve had it really really tough compared to a lot of us but have kept digging in and put a brave face on it all. I so hope surgery could fix things for you Chris. No one knows the right path but I’m steadfast on mine. Quality over quantity. I think pain and discomfort is the only thing that will sway me which sadly you’ve had plenty of. Otherwise I’m happy chugging along on zero treatment at all with psa over 38 and no test till January next year. Please keep well my friend. Don’t give up
User
Posted 31 Jul 2018 at 22:30
Good luck tomorrow Chris.

I hope the meeting gets you whatever it is you need and want

*************************
We can't control the winds - but we can adjust our sails
User
Posted 01 Aug 2018 at 10:55

All the best for appointment today Chris. 

Ido4

User
Posted 01 Aug 2018 at 20:27
Hope the appt has gone ok Chris

Bri
User
Posted 01 Aug 2018 at 21:52
hope Your app went as well as you wanted it go Chris

Viv
X
The only time you should look back is to see how far you have come
User
Posted 01 Aug 2018 at 21:54
So how did it go? I hope there is a plan in place and you are feeling okay about it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Aug 2018 at 23:05

Thanks for the support, firstly it has been a long day, the total round trip was eight and a half hours for a twenty minute consultation. Fortunately the twenty minutes was with the consultant I wanted to see and who has been realistic and gives me some reason to be cautiously optimistic.


He has suggested a change of anti spasm medication and a bladder function test to establish exactly what is happening. Depending on the outcome of that there was talk of botox injections into the bladder and possible bladder augmentation using part of the bowel, he even spoke about urethral reconstruction that had previously been dismissed.They are all more appealing options than bladder removal, but I am well aware that may be the ultimate solution.


I don't think the hyperbaric oxygen treatment is making any difference apart from giving me  toothache and causing my slight hearing problems to get worse. 


I am considering an alternative treatment but I won't go into that, if it helps I will let you know.


The PSA reduction  is obviously a step in the right direction. CJ you are quite right, four and a half years of treatment and about twelve months of discomfort or pain takes it toll mentally and physically. Lynn ,how do I feel about the plan ? disappointed it wasn't implemented by my local hospital last year, 


Having said all that I am still here and still moaning, and the ******* train only had two carriages instead of four again.


Thanks to you all Chris


 


 

User
Posted 02 Aug 2018 at 08:52
Quote" Having said all that I am still here and still moaning, and the ******* train only had two carriages instead of four again."

and the train isn't in the siding yet Chris. !!


*****
We can't control the winds - but we can adjust our sails
User
Posted 03 Aug 2018 at 17:08

it was really a tough test but you seem to have the courage pal

User
Posted 20 Dec 2018 at 07:31

Hi all


Today is the fifth anniversary of my prostate cancer diagnosis.  A big thank you to all who have supported and helped me over the years. Best wishes.



 


Thanks Chris


User
Posted 21 Dec 2018 at 04:15

And the support you give others has been fantatsic too xxx

User
Posted 21 Dec 2018 at 11:06
Well done, Chris. Keep fighting and have a great Xmas.
User
Posted 24 Dec 2018 at 02:18
Happy anniversary xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2019 at 17:44

A quick update. My bladder capacity is now down to around 50ml. A few days ago I had some bottox injections into my bladder in an attempt to calm the spasms down, for the last few days I have been spasm and pain free, only leaked a very small amount, how long it lasts remains to be seen.  So you would think things were on the up , no. Now 20 months post SRT and my latest PSA is up from 0.05 to 0.1, not a less than but an actual 0.10.  On the remote chance that the dilation, prodding around in the bladder and injections a few days before the blood test  have somehow elevated the PSA, I am having another test in 4 weeks time. We often talk about refraining from bike riding and sexual activity etc before PSA tests but does that still apply when your prostate has been removed and the bed irradiated ?


 


 

Thanks Chris

User
Posted 25 Jan 2019 at 17:56

Chris sorry to hear the PSA has risen. I have no idea if the sexual activity bit still applies. I think it’s unlikely the bike riding will as there is no prostate to ‘massage’ with the seat.
Here’s hoping the PSA has dropped in four weeks. Im giving blood next week to see what’s happening with my rise


Keep the faith Chris


Bri

User
Posted 25 Jan 2019 at 18:04
I don't have any advice to offer Chris but I'd like to return the support you have given me. I hope they can find a way to improve the waterworks for you soon. Best wishes.
 
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