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User

Posted 25 Oct 2016 at 20:03

Chris

I really am sorry you are having to undergo yet more surgery. I hope you make a speedy recovery and that the procedure did all it was expected to.

Best wishes to you and Mrs CC as always

User

Posted 04 Nov 2016 at 16:37

I have normally coped well with catheters, but I have never been so pleased to get rid of the latest size 22. The pain of bypassing or bladder spasms have been up there in the 9s and 10s, only for about three or four minutes at a time but sometimes 5 or 6 times an hour and every time I got up. In bed at night absolutely nothing, so I guess it was just in the wrong place.

Did the obligatory three samples and scan, flow between 10 and 16 and about 90ml left in the bladder. One accident already, no warning it was on the way. So back to square one again, but I as I always say I am still here to moan about it and I alot better off than many others.

Thanks Chris

Edited by member 04 Nov 2016 at 16:37 | Reason: Not specified

User

Posted 05 Nov 2016 at 19:09

Pleased you have got the catheter removed Chris , hope things improve for you .Take care Andy

User

Posted 05 Nov 2016 at 21:38

Hi Chris

You'll be relieved to get the catheter out, I can relate to the spasms as I also got them when the i had a catheter in after surgery and it is not nice.

I've had to reduce the catheter that I use daily to a 14 due to radiotherapy just now.

Take care mate and I hope things get better for you.

Sandy

User

Posted 05 Nov 2016 at 22:25

Sorry to hear of your continuing struggles Chris. Hope with the catheter out things will settle a bit.

User

Posted 10 Jan 2017 at 20:05

ONTO PLAN B

Well I got my latest PSA today,now up to 0.2. So salvage RT is to kick in sooner than later,the stricture is now classed as chronic and is going to cause complications with RT, one, I am unable to keep a full bladder and two the RT is likely to cause havoc with the scar tissue. The option is to fit a SPC for at least the duration of the RT and possibly on a permanent basis. Other options long term are relocating the urethra to a different position on the bladder or complete bladder removal.

Thanks Chris

User

Posted 10 Jan 2017 at 21:06

Really sorry to hear this Chris. You don't deserve any of this after all you have been through. It's such a credit to you that you have braved all you have and are still facing the future with your head held high. I think I may have given up long ago tbh. I hope you can make the right decision after careful thought
Chris

If life gives you lemons , then make lemonade

User

Posted 11 Jan 2017 at 02:01

Hi Chris,

I'm really sorry your PSA has risen again. I think if you could have the RT it could help a lot if they are able to give this.

You've had a tough time since having the op. You deserve better luck now.

I'll be keeping my fingers crossed for you. Take care.

Steve

User

Posted 11 Jan 2017 at 04:29

Sorry to read the latest news Chris.

I hope they can sort you out asap.

We can't control the winds - but we can adjust our sails

User

Posted 11 Jan 2017 at 07:41

Sorry to hear of your latest situation, Chris.

I hope a successful solution can be found for you ASAP.

Best wishes,

Arthur

User

Posted 11 Jan 2017 at 07:49

So sorry to read your news Chris ,you have been through so much hopefully the RT may not effect you as much as you fear and get the remaining cancer. .all the best mate Andy

User

Posted 11 Jan 2017 at 10:55

Chris, wishing you all the very best!

User

Posted 11 Jan 2017 at 17:16

Hi Chris.

Sorry to hear the news mate.
Hope something can be found to help you.

Cheers.

User

Posted 13 Mar 2017 at 17:34

So onto the next plan.

Following another small rise in my PSA to 0.27 a couple of weeks ago I went to see an oncologist for the first time in my journey, some of you will know him as a guest speaker at The Mill on the Soar. So hopefully I am good hands. We discussed the add aspirin trial and the PSMA tests, “all things for the future when trial results are known” . Friday last week I had my planning scan and tattoos, and this morning I had a SPC fitted and another dilatation. Salvage RT starts 5 April with 33 sessions. The SPC is insurance as it is expected that the stricture will be adversely affected and the urethra may close up completely.

Provided the PSA drops. I get a trip to London to have a uroplasty, where skin from the inside of the cheek is grafted into the urethra. The assumption is the sphincter will be compromised so when the uroplasty has healed I will have an AUS fitted. They don’t mention those side effects in the blurb. So if all goes well I may be back to something like normal in a years time.

Depending on which PSA results I use, my doubling time varies between 3.9 and 8 months so I don’t think I can afford to sit and wait.

Thanks Chris

User

Posted 13 Mar 2017 at 19:36

Hope it all goes well Chris and the RT will go better than you expect, all the best Andy

User

Posted 13 Mar 2017 at 19:48

Hi Chris

Long time since I have posted, sorry to hear that you are still going through so much hassle. I had a dilation and was using a size 16 catheter pre RT but have now had to reduce it to a size 14, keep trying 16 but it will not go through. I am dreading the day that the size 14 doesn't work. Had my post result from RT and PSA was 0.2 and undetectable, so I was over the moon only to be brought back down to earth by my consultant who informed me that this was expected and nothing would change until I came off the HT next March. Again I know it is a year away but the fear and dread has raised its ugly head. Just wondering how far down in the catheter size did you go before you had your next dilation. Anyway hope all goes well with your journey mate.

Cheers

User

Posted 13 Mar 2017 at 20:07

Safe hands CC .... the best you could wish for, I think. I hope it goes well.

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

User

Posted 13 Mar 2017 at 20:40

Sanders

I am still able to get an IQ14 in without to much trouble. I have found the soft tip 14 slide in with no problems at all, I have ordered some Soft tip 16s. The surgeon got a size 20 camera in without the need to stretch the neck , but it is easier when you can see where it is going.

Thanks Chris

User

Posted 13 Mar 2017 at 23:04

Good luck Chris. My fear when I had RT was that the stricture would be compromised. Fortunately it wasn't.

Hope all goes well and agree you are in good hands

Bri

User

Posted 14 Mar 2017 at 07:14

Chris I hope so much things go well for you and that your structure holds out. You've faced so much mate. The dreaded words RT were repeated to me again last week , so sooner or later ........
Best wishes mate and I'm eternally grateful for you teaching me something I never knew haha

If life gives you lemons , then make lemonade

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