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That was not in the plan.

User
Posted 22 May 2016 at 20:13

Sorry to hear how things went the other day Chris. I just said a rude word loudly, on your behalf.


Sent with wishes of support. You've helped me a lot more than I'm able to repay.


 

User
Posted 22 May 2016 at 22:03

Sorry to hear things didn't go as planned. Hope solutions are found quickly so you can get on with your life without worry.

Paul

Stay Calm And Carry On.
User
Posted 22 May 2016 at 23:55

Thanks for all the messages of support it really does help.


My flow rate had been decreasing and following a meeting with one on my consultants we decided another dilatation was on the cards. Following a cystoscopy the flow had increased but it was thought best to get in there and see what was happening. The theatre list was quite full and I mentioned we did have medical insurance, this meant I could have the op done on a day the surgeon did not work at the NHS.


So I had the op Friday at 4PM and left the private hospital at 9PM Friday night all was well and no catheter was fitted, it was only a small stretch. Since having my stricture I have frequently measured my flow rate using a boots urine bottle and my watch. On Saturday morning the flow rate was 5mls/sec by midday Saturday it was down to 1mls/sec, a call to and then from the private hospital resulted in me being directed to our local NHS urology ward for help if required. By 4.30 pm Saturday I had gone into retention probably one of the worst experiences in my life there is nothing you can do yourself to resolve the problem. We went to the NHS urology ward, every bump and pothole in the road feels like a massive crater. The first course of action was to try and fit a catheter, I have heard many horror stories of guys having catheters fitted by unqualified staff, it is not much better when attempted by a qualified registrar, the attempt failed but I did leak and pass some urine in between attempts. A measly 5 ml of morphine did nothing for the pain.


The next course of action was to get a flexi scope and get a guide wire in “I will be back in about half an hour” from the registrar did not go down well. They got the flexi so far in but it would not pass into the bladder after a few attempts the got a guide wire in but could not get catheter into the bladder. The next step was to use the cooks s curve dilators, bear in mind these are normally used under general or spinal anaesthetic. They got the first and second size in but it was extremely painful and felt like it was tearing through the flesh. The dilators start at 8 and go up in 2s to a 20, because I was now leaking urine and in considerable pain we had a discussion and bailed out of the dilatation with the thought of fitting the super pubic catheter.


Once all the equipment was out I was again leaking and passing urine. They were not keen to fit the SPC on the ward and I was not keen to have another one either. They took the view less is better and let’s see what happens in the next few hours. Overnight I was passing small amounts of urine at a fairly slow rate. I was seen Sunday morning by another Doctor who was not keen to fit the SPC on the ward and surprised me when he said they only fit SPCs to RP patients as a last resort because the bowel gets moved during RP and they can go into the bowel instead of the bladder.


Sunday morning my flow was 0.55mls,sec (3minutes to do 100ml) in the afternoon I again went into retention, desperate times call for desperate measures and I got one of my catheters out and tried that, although I do not think it got into the bladder it did release the urine, a couple of subsequent visits to the loo have proved slow but successful.


Hopefully I get a catheter fitted tomorrow.


Thanks Chris

User
Posted 23 May 2016 at 05:21

wow chris, what a horrible time your having with this, made me squirm just reading about it, here's to the catheter fitting going easy

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 23 May 2016 at 06:21
Chris, that is quite a detailed account of a weekend in hell for you. I really hope that you get this sorted out. I've not had any problems like this at all and like Nidge , it made me squirm . But I really wish you well ( again!).

John
User
Posted 23 May 2016 at 06:49
Hi Chris,

I'm so sorry that you've gone through all this. No one should have to. I really hope that everything will be sorted for you soon.

Steve
User
Posted 23 May 2016 at 06:52

Maybe I won't have breakfast this morning after all 😬😬😬
Not again Chris. You have the worst luck whilst just trying to get better and move on. I don't understand why a catheter can't be just pushed through as normal ? Does the whole urethra collapse or something ? I hope it all improves soon for you.


If life gives you lemons , then make lemonade
User
Posted 23 May 2016 at 07:17

Hi Chris, what a terrible experience I would not wish that on my worst enemy. I feel for you and yes it made me squirm as well, I do hope things go better for you as you are having it really rough at the moment. Why could they not do a spinal anasthetic for you in the hospital if that is way to get the job done?

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 23 May 2016 at 07:39

Really feel for you Chris. Hope it's all a bit easier now

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2016 at 09:04
I am so sorry to hear of your ordeal. I just don't know you coped with it all - braver man than me.

I very much hope things improve for you very quickly.
User
Posted 23 May 2016 at 09:27

Reading all this made me squirm. You have had an awful ordeal, hope solutions are found quickly.

Paul

Stay Calm And Carry On.
User
Posted 23 May 2016 at 09:54
Just at Hospitial, they are going to attempt a catheter insertion via guide wire and flexi. Here's hoping.

Thanks Chris
User
Posted 23 May 2016 at 10:09

Good luck CC

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 May 2016 at 12:15
Good luck mate. Hope all goes well
You have made my eyes water
Don't deny the diagnosis; try to defy the verdict
User
Posted 23 May 2016 at 13:24
Back home again with bag and catheter,they tried the catheter via guide wire and flexi but again it failed. They then went for the full dilatation without any pain killers and only a bit of instilagel for anaesthetic. Half hour later they finally got the catheter in. From a layman's point of view the inside of the urethra looks a mess. Another dilatation on the cards in three weeks and my pelvic area feels like it has been hit with a sledgehammer.

On a lighter note the guy doing the procedure is also my ED consultant and is a great guy and quite a laugh. he was very reassuring and kept telling me he was not in any pain.

CJ not sure why the catheter does not just push through. Google cook or cooks S curve dilatators, they use the camera to get a thin wire into the bladder the pass the dilators over the wire starting and a no 8 pull that one out then more upto a 10 then work up to a no 20. There has got to be a better way.

Thanks Chris


User
Posted 23 May 2016 at 13:34
Originally Posted by: Online Community Member

Hi Chris, what a terrible experience I would not wish that on my worst enemy. I feel for you and yes it made me squirm as well, I do hope things go better for you as you are having it really rough at the moment. Why could they not do a spinal anasthetic for you in the hospital if that is way to get the job done?

Regards Chris/Woody

Life seems different upside down, take another viewpoint



PB

As we are all aware the NHS is not yet a 7 day a week service so not all services are available at the weekend. Our Urology theatres are in the Urology suite and that all closes at the weekend. The guy doing me this morning did ask why they had not taken me into theatre on Saturday.

Thanks Chris
User
Posted 23 May 2016 at 20:54

Christ...i had tears in my eyes reading the account of your ordeal Chris. My urologist said to me if i ever go into retention not to let any Tom Dick or Harry near me...but not sure how i would stop them.

As you know they could not get the camera into my bladder but thankfully i can still pass urine,albeit at a slower pace.

I really hope they get you sorted mate

Bri

Edited by member 23 May 2016 at 20:54  | Reason: Not specified

User
Posted 23 May 2016 at 21:18
B

I did ask a few days before Friday's dilatation" do I need this doing" but was advised to have it done and see what had slowed the flow down. As it happens nothing was found.

By coincidence it is a bit difficult to avoid Tom and Dick they are my consultants and the guy who should have done my catheter on Saturday is Hari. Today's procedure was done by Al.

We have posted about how they would get a camera into your bladder,they can go in through the abdomen wall same as they do with a SPC, hope it never comes to that for you.

All seems to be settling down so far.

Thanks Chris

Edited by member 24 May 2016 at 06:43  | Reason: Not specified

User
Posted 23 May 2016 at 22:39
Chris
You can imagine this made me cry at the memory of the New Year's butchery on my hubby. I can't imagine how men can inflict such pain on other men, it's horrific. We also had the "holiday staff" - don't get me started on the junior doctors after what we went through and John had to endure waiting 24 hours for relief and 3 litres in the bladder and 5 more litres stored in the body. I'm sure that's why he has now got kidney damage.

You have my utmost sympathy, I had no idea men went through this sort of thing. My eyes have been well and truly opened.

You have been a great support to us and although the SPC is a pain in the ***** at times, it has improved John's quality of life and I thank goodness he's got one.

Thinking of you Chris

Devonmaid
User
Posted 23 May 2016 at 23:10
DM

Sorry to have brought back bad memories for you.

I think the problem arises from starting a procedure and not knowing when to stop or going past the point of no return. I only suffered retention for 2 or three hours and not sure how much was in the bladder, I know most of it finished up in the bed that was not changed for quite a while due in part to staff change over. To be in retention for 24 hours with 3 lites must have been a nightmare, he is one exceptional man.

At least I got away without having another SPC.

Thanks Chris
User
Posted 24 May 2016 at 22:23

Hi Chris,


Sorry to read that this is not going to plan.


Your dour sense of humour will get you through it, FCS don't lose that mate!


Will buy you a pint (of creme de menthe or Babycham) when I see you next.  Hope you are both well and keeping smiling?


dave


 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 25 May 2016 at 13:55

Hi Chris.. really living up to the thread title - none of us would like what you have just gone through to be in our plan.


Hope that things are now settling down a bit and that you get sorted out soon.


KRO... 

User
Posted 26 May 2016 at 22:30
Thanks Chris
John won't let me speak about this thread, it's too painful a memory. I do sometimes go on a rant about what happened, but mostly I am glad that he had an SPC and he can live fairly happily with it. It's definitely better than going into retention. I am always hoping you'll come out the other side with everything working well.

Lots of love
DM

Edited by member 26 May 2016 at 22:31  | Reason: Not specified

User
Posted 26 May 2016 at 23:29
DM aka A/WW/SG

Went to the GP today and got the obligatory antibiotics for another water infection. Wish I had got the SPC at the moment,I had forgotten how uncomfortable by-passing can be with a urethral catheter. An old back problem has decided to come back and give me grief at the moment.

Thanks Chris
User
Posted 27 May 2016 at 16:55

You really are going through it Chris, hope it improves quickly for you, will have to meet up some time when your a bit better all the best Andy

User
Posted 27 May 2016 at 17:37

Blimey! 

Just been reading your thread Chris...... Hope things eventually work out OK at long last.. ..... Must be a nightmare for you.. 

Making me stop to think again before I possibly commit to any further investigations in August  re my persistent leakage problems...

Best wishes 
Luther

User
Posted 02 Jun 2016 at 15:52

Thank you for all the messages of support. Having had numerous urethral catheters with very few problems I was amazed at how much a catheter can upset the workings of the body. I have experienced by passing on numerous occasions but the pain associated with this latest catheter has been quite severe, it affected trying to pass motions and I have been suffering with back pain for the last week. The antibiotics to treat a UTI gave me a lovely rash on my feet ankles and calves.


Yesterday I had my catheter removed, the relief was out of this world, despite being the most troublesome catheter it was the least uncomfortable removal of all my catheters, within a few hours most of the back pain had gone and I can now urinate normally again. Flow is a bit slow and volume is also low, touch wood the slight incontinence seems to have gone, although there is more urgency and frequency with a couple of accidents trying to “hold on”.


I am now back on twice daily intermittent self-dilatation for the foreseeable future and will be using a four inch drain pipe otherwise known as a size sixteen catheter. Not been too successful so far but early days. I have not been on any ED medication for the last three weeks but still managed to get some tumescence even with the catheter in, now that is weird.


I hope that any guys still contemplating options and reading this will not be put off the surgery route, my initial surgery was pretty straight forward and hopefully a success, only time will tell.


Thanks Chris

User
Posted 03 Jun 2016 at 14:56
Chris

I truly hope that you get some stability now, heaven knows you have had the most turbulent times , you always deal with everything so calmly and stoically. You continue to support others even when your own journey has been horrible at times.

Thanks for all your kindness and support

xxx
Mo
User
Posted 21 Jun 2016 at 19:18
Hi

Went to see the consultant today about the stricture and decided to let it settle down. Kidney scan and function all okay.

Then the bombshell PSA up from 0.07 in March to 0.13, gutted.

Thanks Chris
User
Posted 21 Jun 2016 at 19:56

Mate !!!
Don't know what to say. I guess you'll have a plan of action ahead. You have had so much stuff done , never a complaint , and always been there to help everyone else.
Best wishes
Chris


If life gives you lemons , then make lemonade
User
Posted 21 Jun 2016 at 20:06
Chris
I am so sorry to read this after all you have been through. Is there any chance of the psa rising because of infection.?
Several folks asked after you this weekend. I hope we can all get together soon.
Xxx
Mo
User
Posted 21 Jun 2016 at 20:10

Hi Chris,

Sorry to read of this apparent rise or is it a "spike". Could it be just that? A "spike"? Hopefully!

Missed seeing you both at MOTS.

Maybe we can rectify this sooner rather than?

atb to you both.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 21 Jun 2016 at 21:30
I am sorry to hear of the PSA rise and I can understand you feeling gutted.

I am very grateful for the support you have given to the forum and to me and the positive attitude you demonstrate despite great difficulties.

Sending you and your wife my best wishes.
User
Posted 21 Jun 2016 at 21:36
Chris,

Really sorry to have read this news. As ever, wishing you all the best. Stay strong. You're such a help to so many of us here, our turn to help you.

John
User
Posted 21 Jun 2016 at 22:24

Fingers crossed it's either infection or all that messing about with catheters and dilators? Hoping things settle down for you.


Rosy

User
Posted 21 Jun 2016 at 22:49
Hi Chris,

So sorry to hear of the PSA rise, let's hope it's just something unconnected with cancer that caused the rise.

I fully understand the way you must be feeling just now.

Have faith.

Steve
User
Posted 22 Jun 2016 at 06:46

Thinking of you Chris and wishing you good news (ie as in infection!)

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2016 at 09:02
Ah Chris
That's really tough to hear after everything you've been through. I'm not sure if this helps but the urologist said not to test for PSA at the hospital on Monday as it would be raised due to the RT and the ongoing infection. Therefore it wouldn't be an accurate result. I'm hoping this is what's caused your rise. As others have said, you are such a kind man, always there with a helpful word. I hope we can be there for you as I know this is hard to bear.

Lots of love
Devonmaid xxx
User
Posted 22 Jun 2016 at 09:15

sorry to read of the PSA result Chris hopefully a blip due to your other problems, all the best mate Andy

User
Posted 22 Jun 2016 at 17:52

Chris,


Sorry to read this.


Can only repeat what others have said and hope this is a temporary blip.


KRO...

User
Posted 22 Jun 2016 at 19:12

Thanks to all of you for your messages and support.


From the pattern of results I was expecting a rise but it still comes as a shock when it actually happens. Right from the time of a less than favourable histology report and a 30 percent chance a bio chemical return I have always hoped to beat the odds.


The options yesterday were a more aggressive approach to the stricture and risk major incontinence and a further op for an AUS, or a major operation for reconstruction of the urethra or leave it alone for a while to see how it goes. The concern of the incontinence was it affecting future possible RT.


Next PSA is in three months, as the consultant said I have still to reach the 0.2 threshold. Am I right that doubling times are irrelevant at such low readings?


This disease does involve a lot of waiting for the next step, so no real plan in place but I might make some changes to the diet.


Thoughts on points raised by some of you.


Recent urine tests have shown slight infection when dipped at GPs but always come back clear from lab tests.


I think the only spike I had was one “dip” from a series of steadily increasing readings.


My Urology nurse also said the rise could be from all the messing about but when pushed said it was only a guess.


I had my PSA test before the scan to make sure there was no influence on the outcome.


Will be good to meet up again and will try to make Mots next year and maybe Euston this year.


Some stats from the stricture, over the last few weeks, the flow has varied between 0.8mls/sec and 14mls/sec. I had to have a full bladder for the kidney scan and drank the recommended 500mls before the scan, post scan the flow was 1.7mls/sec. Three am the next morning the flow was 14mls/sec. The hospital flow on arrival yesterday again after drinking 500 mls of water was back down at 1.7mls/sec with a max flow of 4 mls/sec. The consultant also said constipation can cause retention.


I am still fortunate to be in a better place than many on here, and as I often say still here to moan about it. Once again thanks for the support.


Tanks Chris

User
Posted 22 Jun 2016 at 19:27

I think more people will meet up next year , whether it be MOTS or anywhere else. I'd love to meet some of the people I've 'met' on here , I truly would. It's an elite if slightly sad band of men and partners.
Chris , I think doubling time is always important , probably more so than the reading itself. Lyn probably knows better !! My post surgery psa was 1.5 and doubling time was 6.5 weeks which was a bit grim tbh. But you are still totally on a potentially curative path. I'm sure you could try to stamp your feet and get RT early. Yes , the norm is 0.2 but my friend was offered it recently after only two rises , and he is still only psa 0.9. So ASK
I'm so sorry you have had so many post-op complications mate. I've winced in sympathy for you over and over. There don't seem to be many winners here , truth be told , but there are understanding friends always. You can still beat this !
Chris


If life gives you lemons , then make lemonade
User
Posted 22 Aug 2016 at 11:25
Hi

Just in the theatre waiting area before my ninth urethral procedure. Taking bets on the source of the problem.

1 I dragged the bladder lining into the urethra,
2 another clip
3 a kidney stone,
4 scar tissue,
5 an arm off the robot
6 A bit of Lego.

I will update you later.

😁. Thanks Chris
User
Posted 22 Aug 2016 at 12:28

Hi Chris,


 


Wishing you the very best of outcomes today, after this ninth procedure.


You have been through so may procedures that it makes me wince just reading about them.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


You're a very brave guy!


Hoping to hear very good news from you in the next week or so.


 


All the best,


 


George

User
Posted 22 Aug 2016 at 12:41

Lego is my bet. It gets everywhere. All the best Chris. You're a brave guy


If life gives you lemons , then make lemonade
User
Posted 22 Aug 2016 at 12:47

Hope it went well Chris and they got the little Lego man out in one piece!!

******

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2016 at 18:18

hope its good news today Chris, take care Andy

User
Posted 22 Aug 2016 at 18:46
Thanks for your replies, and the winner was another clip migration.

Thanks Chris
User
Posted 22 Aug 2016 at 19:43

Good to hear that it was nothing more problematic or sinister Chris.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 22 Aug 2016 at 19:54
Ouch Chris, you have our sympathy. Hope it settles down again quickly.

Lots of love Devonmaid
 
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