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User
Posted 22 August 2016 20:40:42(UTC)
Hi Chris you really have been through it. So glad to hear though nothing nasty. Jx
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User
Posted 22 August 2016 21:16:06(UTC)
Chris
I had visions of you coming back to say it was a Pokemon and half the medical team were out trying to catch it.

Seriously though, thank goodness it was nothing more sinister, you have been through so much already I think you are amazing for managing to retain your lovely sense of hunour.

Best wishes to you and Dawn as always
xx
Mo
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User
Posted 22 August 2016 22:34:41(UTC)

Pleased to hear that it was 'only' a clip - have you asked how many more of the b*****s there might be floating around????

Hope you are on the mend soon

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


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User
Posted 22 August 2016 23:04:35(UTC)

Hope it's sorted the problem now. But where's the lego man??

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User
Posted 23 August 2016 00:51:47(UTC)
Hi Chris,

Glad you got things sorted. Lets hope for a quieter time now, you've been through enough.

All the Best,

Steve
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User
Posted 23 August 2016 06:01:02(UTC)

Blxxxy hell I thought the research suggested there was a chance of one migrated clip. Is this the 2nd or 3rd. You have been so unlucky with this Chris but good to see you retain your sense of humour.
I hope you turn that corner soon.

Bri

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User
Posted 23 August 2016 11:22:08(UTC)
Thank you all for your kind messages.

Back home now with another catheter for 10 days, surgeon is taking no chances this time.

To answer the questions, this is Clip number three and despite asking how many clips were used, I never seem to get a totally straight answer but he did say he used two either side of the urethra so at least four.

A few of us who had surgery at the same time did have clip migrations, but the trauma of the way the catheter was removed and the type of catheter seem to be a contributing factor to the migration. Since changing the type of catheter used there have not been any other migrations.

The neck has been stretched to size 20, glad I was under general anaesthetic. After six weeks of frequent night visits to the loo I should get at least ten nights of undisturbed sleep.

Rosy, the lego bit goes back to an earlier post were I said a piece of plastic had been found in the bladder, Lyn enquired if it was a bit of Lego.

Just need to get the flowers or chocolates.

Apart from taking 8 hours (6pm _2am) to get my own medication written up by a doctor and 4 requests for a clean gown to replace my wet gown the care from the staff and care were first class. A night on a noisy ward in a bed with a waterproof mattress with a couple of waterproof bed guards on a warm August night is not top of my lifetime best experiences.

Consultant is still being optimistic that the PSA could remain low or even decrease,we will know in a few weeks.


Thanks Chris
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User
Posted 23 August 2016 17:32:34(UTC)
Blimey!

3 clips is it now?

I reckon that you have single handedly re-written the statistics on clip migration!

Glad this episode is over mate... and hope there are no more!

Keep Right On....

KRO...
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User
Posted 23 August 2016 19:37:22(UTC)

Need another Newark to celebrate

it's only clip migration

TF

:-)

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.
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User
Posted 23 August 2016 23:12:08(UTC)



Rosy, the lego bit goes back to an earlier post were I said a piece of plastic had been found in the bladder, Lyn enquired if it was a bit of Lego.

I did get that - sorry - just my sense of humour!

Hope you enjoy some good sleep.

 

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User
Posted 24 August 2016 06:45:03(UTC)
Thanks again for the messages. For the first time in about six weeks I managed to stop in bed all night, absolute bliss. I did wake a couple of times bit just turned over and went too sleep. The catheter is no problem,draining well, a bit of gel yesterday sorted the discomfort at the tip if the penis. Managing a catheter after a dilatation is of course alot easier than after a RARP.

Hopefully the last one, but in the future if I ask for a cystoscopy because I think something is blocking my urethra, I will be listened too.

Thanks Chris

User
Posted 24 August 2016 08:36:50(UTC)
Chris
I really hope this gets you back on the right track again, so many blips,clips, flips and trips back to the hospital you must feel dizzy with it all.

It is frustrating when medics do not seem to listen to a possible problem, the knowledge of which was gained from a prior personal experience. I hope to goodness that you do not need to try and convince them again at all.

A good night's sleep is a wonderful tonic so I hope they can continue post catheter.

my very best wishes (those go for a reduction in PSA too.)

xx
Mo
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User
Posted 24 August 2016 16:35:55(UTC)

Hi Chris,

I'm glad you're over that ninth procedure, and have had a decent sleep at last.

But, honestly,  THREE clips migrating?

 

I was reading your post, and just shaking my head.

 

As you said:

 

"In future if I ask for a cystoscopy because I think something is blocking my urethra, I  hope I will be listened to."

 

Why do so many consultants/surgeons take no damn notice?

It's the patient that suffers not them. I wonder how they'd like to cope with the agonies you've been through over such a long period?

 

It can only get better now Chris.

 

 

All the best,

 

George

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User
Posted 25 August 2016 06:25:46(UTC)
Hi Chris really glad that at long last you have managed to get a good night's sleep. Just make sure that with all this new energy you don't over do it. Take care jx
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User
Posted 25 August 2016 06:39:28(UTC)
J

The good night's sleep was short lived my daughter took someone to the airport in the early hours and it sounded like she had brought the proverbial herd of elephants back with her.


Thanks Chris
User
Posted 25 August 2016 07:00:40(UTC)

I think she might know my son?

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


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User
Posted 25 August 2016 08:34:19(UTC)

Your inbox is full - tried to PM you. Re the elephants Mo and Julie have both previously given advice on dealing with them but I think yours is a different variety!

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User
Posted 25 August 2016 18:23:37(UTC)
Hi Chris not sure if you got my reply to pm as in box full. No problem, take care jx
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User
Posted 25 August 2016 19:28:52(UTC)

Hope things settle down for you now, Chris. I've been very lucky compared with what you've endured.

Paul

Stay Calm And Carry On.
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User
Posted 27 September 2016 16:59:37(UTC)
Hi

Just back from seeing the consultant, yesterday's PSA was 0.13 exactly the same as the one three months ago, so next test and appointment in another three months.It does feel a bit like being in limbo but I will take a static reading over a rise every time.

My own flow test is measured at 6mls/sec but today's hospital test was 4mls/ sec. A scan showed an empty bladder and two minutes later I passed about another 100ml of urine ? Going to continue with self dilatation and react as required, another dilatation is the next step and then the following step would be an AUS and I would get a trip to London for the surgery.

Hopefully with most of the clips gone things may start to settle down.

Thanks Chris
User
Posted 27 September 2016 18:17:40(UTC)

good news on the PSA Chris ,hopefuly everything will settle down for you shortly , take care Andy

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User
Posted 27 September 2016 18:54:10(UTC)

Good result on the PSA Chris, nice to read this.

atb

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.
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User
Posted 27 September 2016 19:27:40(UTC)
Great news about the PSA Chris. I very much hope the other problem will get sorted for you soon as it can't be pleasant for you.

Kevan
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User
Posted 27 September 2016 20:27:19(UTC)
Great news about the PSA results, Chris. Long may they continue to be good

Take care,

Steve
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User
Posted 27 September 2016 21:19:51(UTC)
Delighted to read about the PSA Chris.

On the subject of bladder emptying we had the district nurse out the other day and she said that she thinks John is still retaining. He's still got both catheters in but they are blocking constantly with something called kidney sludge (yuck). Nothing is straightforward with our nether regions!

Love
Devonmaid
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User
Posted 27 September 2016 21:30:36(UTC)
Chris, great PSA result. Just hoping you can get some resolution of ongoing urinary issues. Tony PW has such a good and informative thread on his AUS journey.
Looking forward to seeing you and D soon.
Best wishes as always
Xx
Mo
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User
Posted 27 September 2016 22:07:18(UTC)

Great news on the PSA Chris.

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User
Posted 28 September 2016 07:54:06(UTC)
Good news on the PSA Chris.

KRO..
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User
Posted 28 September 2016 12:47:17(UTC)
Hi Chris hope all settles down soon, good news on psa. Jx
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User
Posted 28 September 2016 12:53:36(UTC)

Top news Chris!

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User
Posted 28 September 2016 22:15:24(UTC)
Fantastic news Chris, well done so happy to read your news.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 29 September 2016 22:31:13(UTC)
Hi

Thanks for all the messages of support, they really are welcome.

I have followed Tony's posts on the AUS with interest but hoping not to go down that path if I can avoid it. There has been alot happening in the bladder the last couple of days so just hoping it's going to settle down again.

Thanks again Chris
User
Posted 10 October 2016 16:16:25(UTC)

Hi Chris

Not spoke for a wee while but glad to see that your PSA is holding and not rising, take it as good news.

Just reading a bit about clip migration, I too had that and had the operation a couple of months ago where they found two clips in the bladder region which was giving me quite a bit of discomfort which lasted about 3 months prior to the op, such as pain and the need to pee regular and I had trouble trying to hold it back due ton the pain.

Like you I tried to tell certain individuals what my problem was but I was put on overactive bladder tablets but the problems persisted for three months before I finally got the operation to remove the clips. I can understand your frustration with trying to communicate with some people, as sometimes you feel that they are not listening.

Now I self dilate every second day which has now become routine. Starting RT on the 18th Oct so hopefully it doesn't affect the continence side of things as this has settled down pretty well.

Take care. 

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User
Posted 10 October 2016 19:03:01(UTC)
Sanders

I think they need to rewrite the stats on clip migrations. I only got one at a time, two in one go is being a bit greedy. I am going backwards at the moment one minute I cannot hold 50 ml of urine the next minute in retention and holding 300 ml.out of the blue I had one visit to the loo with really good flow 10mls/secand then back too 1-2 for the last couple of weeks. I did make a phone call but certain people still will not listen.


I now ISD twice a day with an IQ14 very easy and comfortable. I have collected quite a few catheters and am using up my lowfric 12 to release the retention.

Good job the PSA is steady I would have no chance of keeping a full bladder for RT.

All the best for your RT.

Thanks Chris

User
Posted 10 October 2016 22:52:13(UTC)
Hi Chris

You don't need me to tell you but keep pestering the people that matter, I took it into my own hands when I thought people weren't listening.I know these people are busy dealing with others but sometimes you have to be selfish.

Really feel for you having to self dilate twice a day, I was everyday but now it's every second day which ain't too bad but for you it must be a nightmare.

Take care mate and I hope you get it sorted sooner rather than later.

Cheers

Sandy
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User
Posted 25 October 2016 16:33:33(UTC)
Hi

Just out of theatre after urethral procedure number ten, no clips this time which is a little disappointing as it means the scar tissue is building again. Just seen consultant all went okay got a four inch drainpipe as a catheter ( okay a size 22) wait and see what happens, catheter out in a week.

Thanks Chris
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User
Posted 25 October 2016 18:52:09(UTC)
Hi Chris
You must have a season ticket for the theatre in your hospital.
I didn't know they did size 22, thought it only went up.to size 20
I use a size 16 for ISD and that seems big.
How do you know that the scar tissue is returning did they tell you.
Take care
Sandy
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User
Posted 25 October 2016 19:11:04(UTC)
S

Definitely a 22,I would send you a picture but it might be classed as indecent, they see the scar tissue when they get the camera in, this time he has done an incision into the scar tissue and it sprang open. Catheter for another week. Pre op he frightened me to death taking about permanent super pubic catheter,AUS and being wet for six months and even removal of the bladder.
Thanks Chris
User
Posted 25 October 2016 19:12:09(UTC)

Hi Chris

My turn to wish you luck. Hope all works out with your latest procedure.

Brian.

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User
Posted 25 October 2016 20:01:21(UTC)

Really feel for you Chris everything crossed for you .Andy

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User
Posted 25 October 2016 20:03:54(UTC)
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
xx
Mo
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User
Posted 04 November 2016 16:37:09(UTC)
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
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User
Posted 05 November 2016 19:09:36(UTC)

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

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User
Posted 05 November 2016 21:38:55(UTC)
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
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User
Posted 05 November 2016 22:25:03(UTC)

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

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User
Posted 10 January 2017 20:05:50(UTC)
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 January 2017 21:06:10(UTC)

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
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User
Posted 11 January 2017 02:01:20(UTC)
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
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User
Posted 11 January 2017 04:29:53(UTC)

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
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User
Posted 11 January 2017 07:41:58(UTC)
Sorry to hear of your latest situation, Chris.

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

Best wishes,

Arthur
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