That was not in the plan.

User

Posted 19 Oct 2015 at 13:50

I am now 18 months post op and following 5 PSA tests at 0.03 (last one was six months ago) my latest PSA is 0.06, still quite low I suppose but not what I had hoped for. The threshold to see the consultant is 0.1 so still a way off that and I was told there was a 30 percent chance of biochemical return following the histology on the prostate. I see my urology nurse Tuesday for my 18 month post op check up.

I have been through the mill in the last few weeks and do wonder if it has any effect on the PSA. Soon after my op I developed a stricture and had two dilatations which did initially sort the problem following the second dilatation I also carried out intermittent self dilatation until I could no longer get the catheter into the bladder.

On August 17th I spoke to my surgeon and queried whether I needed the third dilatation and possible incision into the scar tissue, my flow was still between 8 and 11 MLs/second. He told me he could improve the flow and we needed to know why the catheter would not pass into the bladder.

20th August I went into theatre for my third dilatation and woke up in the recovery suite, in retention being given a very poor local anaesthetic, morphine into my arm, signing a consent form and having something that felt like a knitting needle being pushed through my flesh just below the belly button and into my bladder. I had just had a super pubic catheter fitted.

The procedure had been aborted because there was too much blood and they could not see what was happening. A course of antibiotics and let’s give it time to heal. Five days later I was due to shut off the SPC and urinate through the penis. On the fourth time of passing urine the penis swelled up to a full size erection and I was in agony(OH at work again). A call to the GP and she said sounds like they have punctured the urethra and you are passing urine into the soft tissue of the penis. Opened up the SPC and fitted a bag no more passing urine and no more pain. No problems with this SPC quite comfortable and got on with normal activities.

28th September, time for another go, the plan is remove SPC insert camera have a look inside the bladder then pass a guide wire through the SPC opening into the urethra and out the end of the penis, then pass the dilators into the bladder neck and stretch up. So the SPC comes out and the bladder falls away from the front wall, they are now fishing around inside to get the bladder back in position and find the hole. They get the bladder back in position and carry on. So they get stretched up and get the camera into the urethra only to find a second Hem-o-lok clip from the original op has migrated into the urethra/ bladder neck. A replacement SPC is fitted and a new urethral catheter is fitted to the penis but capped off and left as a back up

I should be home the next day but a high temp, low blood oxygen, low potassium and the risk of infection keeps me in for four days and another course of antibiotics. Just prior to discharge the SPC stops draining so a bladder flush and the urethral catheter has a bag fitted. Friday at home all normal both bags draining and no blood in the bags.

Saturday morning, got up drained night bags still clear of any blood whilst shaving had some pain from a catheter bypass ( fluid passing between urethra and catheter) nothing unusual , I had experienced these many times in the prior treatments. When I started to remove my under wear I noticed the pad was covered in blood, not a mixture of blood and urine but pure blood. I shouted for the wife and as I waited for her noted that there was blood dripping from the end of my penis about one drip per 2 seconds.

I applied the pad to the penis to remove the excess blood and to my horror saw a lump of something hanging out between the end of my penis and the catheter (pictures on request), having suffered urethral damage and a complication with the bladder during the operation a few days earlier I was now getting quite worried. A doctor in the emergency department pulled part of it out and tells me it is a blood clot.

I will skip the procedure of getting readmitted to hospital but it was not fun. My consultant has now arranged open access back onto the ward if I need it.

A further four days in hospital waiting for the blood in the catheter bags to drop to an acceptable level.

Ten days after the last procedure I went to my GPs to have the SPC entry stitch removed and was told they would not take the stitch out as it was too infected and started me on another course of antibiotics. Seven days later another visit to the GP and again will not remove stitch, still too much infection, they have taken swab of the gunge and that should be back any day. 22 days after op wound is still leaking puss, hopefully when I see the urology nurse she is going to get a consultant involved.

Next procedure to laser the clip out and finish the job November 9th.

I am still here and still a lot better off than many others on here.

Edited to add the following because I received a PM that contained this comment "considering having the da Vinci operation,rather concerned reading your catalogue of difficulties" , my reply back was "if I could turn back the clock would I go down the same path 100 per cent yes " I would hate to think my minor misfortunes would put anyone off having the treatment that is right for them.

Thanks Chris

Edited by member 21 Oct 2015 at 11:23 | Reason: Not specified

User

Posted 28 Apr 2018 at 08:17

Four years on

Well 4 years ago today I had surgery to remove my cancerous prostate.

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.

Thanks Chris

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 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 28 Apr 2017 at 10:11

Three years ago today I went into theatre and came out a few hours later after parting company with a cancerous prostate. Today I will have salvage RT session number 16 of 33. Not quite what I had in mind three years ago but I am still here and still have lots of options open.

Thanks for all the support over that time.

Thanks Chris

User

Posted 20 Oct 2015 at 11:46

Hi Chris,

My heart goes out to you on reading about your horrific experiences over the past few months.

It has to be one of the most shocking stories I've read on here.

How you keep your sense of humour is beyond me, but thank God you're able to retain it - and your fighting spirit.

I felt I just had to reply, because your story really struck a chord with me

Your experiences took me all the way back to my darkest days in 2005.

Within days of having my very first PSA test (it came back at 182) in March of that year, I was having a biopsy done under general anaesthetic by a urologist.

I should have been home in six hours, but it was 7 days and six hours before I was able to leave hospital.

Everything went wrong, and was made far worse by neglect.

Through the first three days of agonising pain, none of the staff would listen properly to my complaints about something being wrong. I knew that the catheter wasn't functioning as it should. Time after time I was ignored.

By the fourth day, I was passing out and becoming delirious. My face was grey, and my pain was so bad that my wife rang the kids, telling them to get down to the hospital as fast as possible.

It was only through the intervention of two consultants (from another discipline) who happened to be visiting the urology ward that I was saved. Before I knew it the panic button was pressed, curtains were pulled around the bed, I was injected with morphine. and a team of nurses were helping the consultants clear masses of blood clots.

I will never forget the first words of the consultant who had spotted me. She said 'Never let yourself get into so much pain again'.

I can't remember answering, so must have passed out. My wife tells me I was delirious for a long time. Luckily, morphine blotted out those memories for me.

Chris, from that day on, my attitude to my PCa and its treatment changed forever.And of course, my opinion of that urology department, from consultant down to nursing staff is unprintable here.

The experience (and my anger) lit a fire in my belly which burns to this day. I vowed I would never again allow any clinician to treat me badly.

Looking back, I'm glad I experienced the worst side of care so early in my battle, because it made me 100% pro-active in choosing my treatment (and my doctors). It may even have helped me survive so long after the terminal diagnosis.

I have never had to raise my voice in anger, but have found that being very firm (but oh so polite) has seen me through the last ten and a half years with no further bad experiences.

Luckily I have an oncologist I have complete faith in, and after so many years we're more like friends than doctor and patient now. If only they were all as good.

You have suffered far worse than I did, and for much longer. If any good thing can come out of all your pain, it's that you can use the experience to make you stronger and more determined than ever to win through.

Wishing you a full recovery and some much happier, brighter, pain-free days ahead.

And - I hope to see you at The Mill next June looking 'damn good and worry free'

All the very best,

George

Edited by member 20 Oct 2015 at 11:48 | Reason: Not specified

B2PCa

User

Posted 26 Jan 2019 at 01:06

Chris, John's PSA went up to 0.1 and then 0.11 about 3 years ago and has then gone back to <0.1 more or less every test since. Too soon to panic, I think.

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

User

Posted 21 Oct 2015 at 09:07

Good grief Chris, George, are you two super-human or something? Extract of your bravery and tenacity should be fed to the England rugby team before the next world cup (not Wales, we was robbed).

My experience of NHS urology being on another planet is mild in comparison:

Getting appointments in the wrong order
Inability to read and digest my carefully typed (and succinct) history since TURP/LRP
Not having a clue how the b****y urodynamic testing machine worked
None of the three consultants involved at different times being able to give a consistent diagnosis and recommendation
Medical dictionary not having the word "stricture" in it
Being put on a maximum 12 month ("we are trying to get it down") waiting list for CONSIDERATION for an AUS nearly TWO years ago (no, I still have not heard anything).
My father, RIP just in time to finance me through the private sector

Oh, yes, and discontinuity half way through flow rate test when nurse walked into the room and asked me where the consultant was....

I think I may have to vote for Liane Wood (our Nicola Sturgeon) next year....

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 26 Oct 2015 at 22:32

Christ on a bike.

I am never going to complain again.

L xx

User

Posted 21 Nov 2015 at 12:26

Hi Chris.Im 4 weeks post De Vinci(operation performed in Bradford)&go to have my first PSA blood test next week followed up by a review with the surgeon the week after.Reading your story makes me wonder just what is to come,i like everyone else ive read am overwhelmed by your bravery,resilience&humour in situations most would find unbearable.Im just trying to regain fitness,get more continent&not do anything to jepordise the blood test,but its so difficult to know what to do.I guess the PSA will be what it will be.I was Gleason 3+4(T3a)on Right side/Lside benign, with 12% disease(PSA originally was 5.2).You are an inspiration to us all.I wish you the best of luck in your journey back to good health&look forward to reading further posts regarding your recovery.

Best Wishes.

Polarbear2.

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 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 14 Mar 2017 at 22:54

CC, just don't tell Jamie that you know Si - he might refuse to see you :-/

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

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

B2PCa

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.

User

Posted 26 Jan 2019 at 10:09

Originally Posted by: Online Community Member

Chris, John's PSA went up to 0.1 and then 0.11 about 3 years ago and has then gone back to <0.1 more or less every test since. Too soon to panic, I think.

i was telling Lesley this last night. It does offer reassurance

Bri

Edited by member 26 Jan 2019 at 10:10 | Reason: Not specified

User

Posted 22 Feb 2019 at 17:13

You’re a trooper Chris. Best wishes with it all.

If life gives you lemons , then make lemonade

User

Posted 19 Oct 2015 at 14:05

Blimey Chris!

You have been through the mill!

Hope you get sorted soon and things settle down for you.

I'm no medic but your minute PSA rise could be attributed to a number of things, and at a guess recent trauma may have played a part ?

Best Wishes
Luther

User

Posted 19 Oct 2015 at 14:47

Sorry to read that you are still having problems Chris but glad that it is not more serious, and may at last be getting sorted out for you both.

atb

dave

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

User

Posted 19 Oct 2015 at 14:56

Gosh Chris
I'm so sorry that all sounds terribly awful. Actually worse. You brave guy !! I agree with Luther that all that pulling and pushing etc cud be the reason for that rise. And it's only one rise. Hang on in there :-)

If life gives you lemons , then make lemonade

User

Posted 19 Oct 2015 at 17:24

Ouch ouch OUCH!!!

So sorry you've had all this trouble Chris. Hope you get it sorted soon

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

User

Posted 19 Oct 2015 at 19:14

Chris, you tell an awful story with such humour and even temper.myou must have been in agony at times. I do hope you are getting to the end of it. Thinking of you and hope for a resolution soon.

User

Posted 19 Oct 2015 at 19:50

2nd attempt. ..thought I'd posted once but not here.
Anyway, my legs are platted reading your post Chris...what a time you have had. As you know I also have a bladder neck stenosis and literally changed my mind regarding the op at the last minute...
I hope they get things sorted for you soon.

Hopefully the PSA will drop down by yiur next test

Bri

User

Posted 19 Oct 2015 at 20:11

Sorry to read of all your troubles Chris psa is still well down though hopefully just a blip all the best for November 9th Andy

User

Posted 19 Oct 2015 at 20:51

Hi Chris

You really have had a rough deal - I am sorry to hear of your suffering.

Wishing you all the best on 9 November.

Kind regards.

User

Posted 20 Oct 2015 at 14:16

Chris

I am so sorry you are still going through such an ordeal. Hope you are around that corner now.

User

Posted 21 Oct 2015 at 00:37

Hi Chris,

I'm so sorry for everything you've had to go through in recent weeks. No one should have to go through that. I really hope that they can sort things out for you really soon.

Look forward to meeting up with you and Dawn at another event very soon.

Take care.

Steve

User

Posted 20 Nov 2015 at 21:34

at last Chris,

Some good news for you and Dawn.

Just one thing! Have you checked to make sure she has enough marigolds to attend to your every need mate?

OOPS!!!

Have you made sure that SHE has checked that SHE has enough marigolds to attend to your every need, and then some? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

atb to you both. Hopefully we can all meet up again soon.

dave

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

User

Posted 20 Nov 2015 at 21:41

Glad to hear your situation is improving, Chris !

Fiona.

User

Posted 20 Nov 2015 at 21:44

really pleased for you Chris all the best Andy

User

Posted 20 Nov 2015 at 21:45

Hi Chris

Glad to hear the catheter is out at last and you can now get on with your life.

Wishing you well with your forthcoming PSA test (mine is due very soon as well)

Kind regards

User

Posted 20 Nov 2015 at 22:52

Phew...great news Chris

Bri

User

Posted 21 Nov 2015 at 00:09

Originally Posted by: Online Community Member

CB

It gets worse,during my last stay in hospital the nurse injected me with an anti clotting medication gave me some pills to take and told me to drink some water. Thirty seconds later I grabbed a sick bowl tried to move into a better position, Dawn was half holding the sick bowl I emptied the contents of my stomach which went in one side of the bowl and straight out the other side all over Dawn. Unfortunately I had not bought her any aprons, but at least she did have some gloves to help clean me up. I do love her.

Thanks Chris

Tutt tutt tutt. She only caught half of it in the bowl, shoddy.

That you love each other is the best news. Suspect she loves you more?

dave

Edited by member 21 Nov 2015 at 08:36 | Reason: Not specified

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

User

Posted 21 Nov 2015 at 08:50

Really glad for you Chris. You've been incredibly brave I think. Let's hope everything gets back to normal.
Chris

If life gives you lemons , then make lemonade

User

Posted 21 Nov 2015 at 10:58

Chris

I'm sure Dawn has had far worse than you missing the puke bowl, some men will do anything to get us ladies to take our kit off!

Seriously though I am sure that was minor price to pay for having you tube, bag and fancy free again. May your onward recovery be swift and complete.

Hope to see you both in the New Year

All my best wishes

User

Posted 22 Nov 2015 at 03:40

Hi Chris,

You've had a rough time of it recently. I really hope that things are a bit easier and you can look forward to a better new year.

Take care.

Steve

User

Posted 17 Dec 2015 at 20:34

Chris

Honest and Frank post so thanks for that. I am sure you have had more crosses than enough to bare so I hope 2016 is onwards and upwards for you in more ways than one!

Have you been following Tony and his posts on the pump?

I will message you after Xmas re the Newark gang.

I trust D is well and enjoying sporting her marigolds?

Xxx

User

Posted 17 Dec 2015 at 21:01

Hi Chris pleased for you on the PSA results hope the other improves as well enjoy xmas Andy

User

Posted 20 May 2016 at 10:39

Chris ,

I hope that all goes well for you this afternoon. Your attitude and determination that you share with us in facing this disease is great. And I follow your updates on ED too with interest, having just embarked on ED treatment myself. Before dx I would never have thought I should be making comments like that. But being on this forum has certainly changed my outlook on life !

John

User

Posted 20 May 2016 at 10:56

Fingers crossed for you Chris.

Hope all goes well

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

User

Posted 20 May 2016 at 11:03

Hi Chris

More General Anaesthesia? Just think of it as being like one of those Spa 'pamper days' where you get to relax for a while ( so I'm told).

Joking apart, sending you this by way of a brief message of support. Only sorry I can't be of more practical help.

User

Posted 20 May 2016 at 15:01

Hi Chris
I can only wish you the best of luck. Boy have you manned up and been through the mill , yet managed to help and encourage others at the same time. Thankyou.
Chris

If life gives you lemons , then make lemonade

User

Posted 20 May 2016 at 16:26

Hi Chris,

Hope the procedure goes well, you are due a good result. Tried to access your profile several times but keep getting 'Page not found'

Barry

User

Posted 20 May 2016 at 16:38

Hi Chris,

Hope everything goes well and things are much better for you.

All the Best,

Steve

User

Posted 20 May 2016 at 16:58

Hi Chris..fingers crossed this sorts it at last for you

Bri

User

Posted 20 May 2016 at 17:16

Only just seen this... Hope all went well Chris.

KRO...

User

Posted 20 May 2016 at 17:44

Fingers crossed this time is the last x

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

User

Posted 20 May 2016 at 22:22

Chris

thinking of you lovely man, hope this sorts out some of your issues at last. Its been a real tough ride for you and Mrs Chris.

User

Posted 20 May 2016 at 22:26

Hope all went well.

Thank you for all the help and encouragement you give.

Best wishes

User

Posted 21 May 2016 at 09:22

Hope all went well, Chris and you start flowing at full rates again soon!

Paul

Stay Calm And Carry On.

User

Posted 21 May 2016 at 10:12

Hi Chris what a rough ride you have had, let's hope this sorts things out in the peeing lots front.

Keep posting with your upbeat words and support to others while you are going through the mill yourself, thanks

Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 21 May 2016 at 19:29

Oh CHRIS

You have my sympathy, John was supposed to have the dilation treatment but it's been decided that an SPC will be needed for life so no point in going through more procedures. I think it's bearable if you truly believe it will make a difference, John had a CT scan recently, as you know, and it showed his prostate had infiltrated the bladder to such an extent that there is no point in more surgery.

On the other hand, I've got everything crossed that this latest op will improve the flow.

All the luck in the world

User

Posted 22 May 2016 at 00:17

Chris,

Naturally, we are all optimistic about our treatments and largely expect these will not involve continuing problems other than the usual side effects. You have been very unlucky for one reason or another and it says much for your strength of purpose that with the benefit of hindsight you would go through all this again.

We are all with you in hoping all these further problems with soon end.
,

Barry

User

Posted 22 May 2016 at 08:49

Chris

Oh my I feel so bad for you, so many procedures, ops and now another retention. I really wish that you could just get something that would make your life easier.

You still stay positive and upbeat despite everything which tells me that you are one strong man.

I will be thinking of you

All my best wishes

User

Posted 22 May 2016 at 18:40

Sorry to hear of your troubles Chris hope things improve for you ..All the best mate Andy

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 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 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 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 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 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

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

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 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

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

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 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

B2PCa

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 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

User

Posted 22 Aug 2016 at 21:40

Hi Chris you really have been through it. So glad to hear though nothing nasty. Jx

User

Posted 22 Aug 2016 at 22:16

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

User

Posted 22 Aug 2016 at 23:34

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

User

Posted 23 Aug 2016 at 00:04

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

User

Posted 23 Aug 2016 at 01:51

Hi Chris,

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

All the Best,

Steve

User

Posted 23 Aug 2016 at 07:01

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

User

Posted 23 Aug 2016 at 12:22

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

User

Posted 23 Aug 2016 at 18:32

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...

User

Posted 23 Aug 2016 at 20:37

Need another Newark to celebrate

it's only clip migration

:-)

dave

Edited by member 23 Aug 2016 at 20:38 | Reason: Not specified

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

User

Posted 24 Aug 2016 at 00:12

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.

User

Posted 24 Aug 2016 at 09:36

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.)

User

Posted 24 Aug 2016 at 17:35

Hi Chris,

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

But, honestly, THREE clips migrating?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

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

B2PCa

User

Posted 25 Aug 2016 at 07:25

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

User

Posted 25 Aug 2016 at 08:00

I think she might know my son?

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

User

Posted 25 Aug 2016 at 09:34

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!

Edited by member 25 Aug 2016 at 09:34 | Reason: Not specified

User

Posted 25 Aug 2016 at 19:23

Hi Chris not sure if you got my reply to pm as in box full. No problem, take care jx

User

Posted 25 Aug 2016 at 20:28

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.

User

Posted 27 Sep 2016 at 19:17

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

User

Posted 27 Sep 2016 at 19:54

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

atb

dave

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

User

Posted 27 Sep 2016 at 20:27

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

User

Posted 27 Sep 2016 at 21:27

Great news about the PSA results, Chris. Long may they continue to be good

Take care,

Steve

User

Posted 27 Sep 2016 at 22:19

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

User

Posted 27 Sep 2016 at 22:30

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

User

Posted 27 Sep 2016 at 23:07

Great news on the PSA Chris.

User

Posted 28 Sep 2016 at 08:54

Good news on the PSA Chris.

KRO..

User

Posted 28 Sep 2016 at 13:47

Hi Chris hope all settles down soon, good news on psa. Jx

User

Posted 28 Sep 2016 at 13:53

Top news Chris!

User

Posted 28 Sep 2016 at 23:15

Fantastic news Chris, well done so happy to read your news.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 10 Oct 2016 at 17:16

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.

User

Posted 10 Oct 2016 at 23:52

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

User

Posted 25 Oct 2016 at 17:33

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

Edited by member 25 Oct 2016 at 17:58 | Reason: Not specified

User

Posted 25 Oct 2016 at 19:52

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

User

Posted 25 Oct 2016 at 20:12

Hi Chris

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

Brian.

User

Posted 25 Oct 2016 at 21:01

Really feel for you Chris everything crossed for you .Andy

User

Posted 25 Oct 2016 at 21:03

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 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 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 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

User

Posted 14 Mar 2017 at 08:07

Hope all goes well with your latest treatment plan Chris

Best wishes,

Arthur

User

Posted 14 Mar 2017 at 20:48

Any one in the hands of Jamie is in safe hands I am sure Si would second that .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Mar 2017 at 21:02

Hi Chris,

I hope everything goes well and all the difficulties you have faced over the last couple of years, disappear. You have been through enough.

Now is time for things to be sorted. Good Luck.

Steve

User

Posted 14 Mar 2017 at 21:34

Hi Chris

Welcome to team Jamie great bloke for heated discussions

Hope all goes well

Don't deny the diagnosis; try to defy the verdict

User

Posted 07 Apr 2017 at 15:12

Hope it goes well for you Chris, i have just got back from city hospital having a bone scan, could have met for a coffeehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Don't deny the diagnosis; try to defy the verdict

User

Posted 07 Apr 2017 at 16:41

Good luck, Chris.

Hug,

Lola.

User

Posted 07 Apr 2017 at 17:49

Very, very best wishes to you Chris!

User

Posted 07 Apr 2017 at 17:53

Hope all goes well for you and that you get a good result.

User

Posted 07 Apr 2017 at 18:15

Fingers crossed for you Chris.

dave

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

User

Posted 07 Apr 2017 at 18:42

Good luck with your RT, Chris.

Keeping everything crossed that this treatment will give you the best possible outcome.

I think radiotherapy made a massive difference to my chances back in 2005.

This may well be the year that everything changes for the better after all you've had to contend with for much too long.

All the very best,

George

B2PCa

User

Posted 07 Apr 2017 at 19:52

I'll be thinking of you Chris. Hope it goes well

If life gives you lemons , then make lemonade

User

Posted 07 Apr 2017 at 20:08

Best wishes, hope it all goes well.

Sandy

User

Posted 08 Apr 2017 at 12:18

Hope it goes well Chris

User

Posted 08 Apr 2017 at 12:49

Keeping my fingers crossed for you, Chris

Steve

Edited by member 08 Apr 2017 at 12:50 | Reason: Not specified

User

Posted 09 Apr 2017 at 21:28

Thinking of you Chris. I think oncologist J running 70 mins late was because he needed a swift G&T after seeing Si 😜

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 10 Apr 2017 at 08:55

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Not my fault, i see Jamie Thursday

Don't deny the diagnosis; try to defy the verdict

User

Posted 28 Apr 2017 at 12:09

Chris,

You have been amazing member of this forum, I thank you for all your contributions.
I wish you all the very best for the future which I sincerely hope will be long and happy!

User

Posted 28 Apr 2017 at 12:28

Chris, everything is going to be OK. And if any other issue, as you say, lots of options to go.

The best to you,

Lola.

User

Posted 28 Apr 2017 at 13:33

Keep smiling Chris, I know, like me, you tend to be a glass half full person so keep positive

User

Posted 28 Apr 2017 at 15:12

Hi Chris,

Half way through the RT, here's hoping the rest of the treatments go both well and quickly for you and you get a great end result

Best wishes, Arthur

User

Posted 29 Apr 2017 at 09:30

Keep fighting Chris

Bri

User

Posted 07 May 2017 at 20:34

Hi Chris

Finished salvage RT in June 2016.

First PSA in Sept, then December, then March 2017. PSA doubled within 6 months to 1.2 so now on HT.

All the best

Kevan

User

Posted 07 May 2017 at 21:40

Hi Chris, I finished the RT in Sept and had the first PSA test the following March so 6 months.
It then took 2 years to reach its lowest point

Bri

User

Posted 07 May 2017 at 21:52

I think it is a bit like the chemo CC - the PSA can rise for a short time after RT as the cancer cells die off so PSA is not reliable immediately afterwards.

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

User

Posted 25 May 2017 at 19:54

Well done Chris. They told me any side effects would peak about two weeks after the RT ended

Enjoy the summer ☀️☀️

User

Posted 25 May 2017 at 19:57

Hi Chris,

Pleased that you have completed RT ok. I think you will have a few side effects in the coming weeks but these should settle down in time.

Hope everything goes well for you from now on. You deserve an easier time.

Take care.

Steve

User

Posted 25 May 2017 at 20:46

Good luck for the coming weeks and months Chris.

Hope your recovery goes well

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

User

Posted 25 May 2017 at 20:51

Best wishes as always Chris.

If life gives you lemons , then make lemonade

User

Posted 26 May 2017 at 19:11

Hi Chris hope things settle down quickly for you All the best Andy

User

Posted 08 Jul 2017 at 10:19

Just catching up with the news, and can honesty say I had my legs tightly crossed reading yours.
Hope everything went as planned, and although recovery is slow, things will get better.
Take care.
toad.

User

Posted 10 Aug 2017 at 22:44

Yay Chris. Hopefully well worth it I'm sure. You're a trooper mate.

If life gives you lemons , then make lemonade

User

Posted 11 Aug 2017 at 00:53

That is so good to see - congratulations x

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

User

Posted 11 Aug 2017 at 05:54

Great news, Chris

User

Posted 11 Aug 2017 at 06:35

Great news Chris

User

Posted 11 Aug 2017 at 06:44

Excellent news Chris

User

Posted 11 Aug 2017 at 07:07

Well done Chris.

Very pleased for you.

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

User

Posted 11 Aug 2017 at 08:50

Top news Chris! Chuffed to rocks for you!

User

Posted 11 Aug 2017 at 14:50

Great news Chris. It's a great feeling isn't it.

All the best,

Kevan

User

Posted 11 Aug 2017 at 16:14

Fabulous news Chris
Keep on rocking

Paul

User

Posted 11 Aug 2017 at 16:21

Cool stuff Chris

User

Posted 11 Aug 2017 at 18:10

Woo hoo! Fab news indeed...

User

Posted 11 Aug 2017 at 18:26

Sound result!

User

Posted 11 Aug 2017 at 23:30

Fandabidosie .

Brilliant result .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Aug 2017 at 02:42

That's wonderful news, Chris.

Really pleased for you.

Steve

User

Posted 12 Aug 2017 at 20:42

Oh wow, so delighted to see this news.

User

Posted 07 Mar 2018 at 23:26

A packed 2 carriage train Chris? That would be the final straw for me. ;-)

Adore your resilience. Choose wisely mate, and then go for it.

atb to you and D

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

User

Posted 08 Mar 2018 at 08:42

Oh man I remember you trying to decide what to do and I voted for bladder out back then. You’ve been through all this and it’s not worked :-((
I so admire you , always have , and feel so awful what you’ve been through though I’m probably yet to experience it myself. Try and stay strong Chris. Our love and wishes to you

Edited by member 08 Mar 2018 at 08:42 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 08 Mar 2018 at 08:53

What a choice to have to make Chris,

Good luck with whatever path you go down

You are one strong man

***

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

User

Posted 08 Mar 2018 at 11:44

Sorry to hear about your latest situation, I hope they can find a good resolution for you soon.

Best wishes, Arthur

User

Posted 08 Mar 2018 at 12:04

I know you will make your choice and live with it Chris as you have always done.

You are very strong, hope you get things sorted out.

Ian

Ido4

User

Posted 28 Mar 2018 at 20:12

Hi guys

Well I had a couple of days in The Christie this week and I have got to say it is a superb hospitial.

I had cystoscopy and urethrotomy under general anesthesia, the surgeon has cut into the stricture so a little nervous of how that will affect my already iffy incontinence. They filled the bladder to ascertain it's capacity and sadly it it now down to 120ml. The bladder is badly scarred by the radiotherapy and there is little chance of the bladder recovering. I see the surgeon in a couple of weeks to discuss options but it comes down to Suprapubic catheter for life or bladder removal and urostomy bag, I am leaning towards SPC but do wonder how I might cope as I get older.

I now have two catheters again for two weeks, on this occasion the SPC is trouble and pain free, the urethral catheter is very uncomfortable mostly in the perineum area, the instilagel soon relieves the tip of penis stinging. I had forgotten how in uncomfortable bypassing could be.

I am going to have another 20 sessions of oxygen treatment, not over optimistic of it working, but there does not seem to be any effective treatment for radiation damage, only management of the side effects.

For my moaning subject I will pick hospital gowns, mine only had a tie trap on one side and I got fed up of seeing men's bare backsides hanging out of untied gowns.

Thanks Chris

User

Posted 28 Mar 2018 at 21:00

So sorry Chris really I am. It’s an utter credit to you as a man what you have squared up to. You’ve never given up and I doubt you ever will but we genuinely feel so sorry for all you’ve been through. Strength to you both from us both

If life gives you lemons , then make lemonade

User

Posted 28 Mar 2018 at 21:33

So sorry to read your latest update Chris.

I'm sure you'll deal with it all in your usual phlegmatic manner.

Good luck and Best Wishes

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

User

Posted 28 Mar 2018 at 23:01

Chris what an awful time you continue to have. I just hope some kind of doable procedure can give you some respite. Thinking of you,mate.

User

Posted 28 Mar 2018 at 23:24

I thought the NHS had done loads of work around respect and dignity? Apparently, the newsletter about patient bums hasn’t made it as far as the Christie :-/

A terrible choice for you to make but I think you have a real trust and confidence in your surgeon who will guide you in the right direction. Did you ask though, if you choose SPC now does that completely rule out bladder removal in the mid to far future?

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

User

Posted 29 Mar 2018 at 11:36

Sorry to read this Chris. As others have said you have dealt with issues as they come along.

I really admire how you have done that.

Hoping you can get a workable solution to this.

Wishing you all the best, Ian.

Ido4

User

Posted 29 Mar 2018 at 12:58

Thanks for the support guys.

Lyn

I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns. The staff are very good at the modesty and privacy procedures,saying "knock knock" and always asking before entering closed curtains etc and very quick to cover up the elderly gentleman's exposed bits when thet get out of bed or come out of the bathrooms etc.

As regards the SPC if you mean am I aware a long term catheter can cause bladder cancer then yes I am. Having a urostomy or a SPC still means messing around draining bags etc. My new normal is having a suprapubic and I can cope with it. Going through another major op and with my luck having possible complications isn't a risk I want to take at the moment. It is a pity there is not a reasonably priced decent incontinence system that does not involve clamps or gluing things to my penis.

Sandra not sure about phlegmatic, I have my ups and downs and some very dark days. Just coming up to the fourth anniversary of my surgery and it take its toll. In my bay at hospitial there were 4 beds the other three guys were all in a worse situation than me.

When I started my journey nearly four and a half years ago there was talk of a vaccine for PCa, within 5 years, will it happen this year ?

Thanks Chris

User

Posted 29 Mar 2018 at 14:36

Originally Posted by: Online Community Member

Thanks for the support guys.

Lyn

I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns.

https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

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

User

Posted 29 Mar 2018 at 14:54

Sorry no, I wasn't thinking about bladder cancer down the line - I was just thinking that if you choose SPC now and then can't manage it when you are older, would you be able to have the bladder removed? In other words, you can't choose option B and then revert to option A but could you go with option A and still have option B if you needed it?

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

User

Posted 29 Mar 2018 at 19:29

Bloody hell Chris....what a decision. As others have said you have had it tough but you continue to face up to the issues with dignity

Stay strong mate

Bri

User

Posted 30 Mar 2018 at 18:47

Hi Chris,

Blimey. What to say? All along, you have been just amazing, stoic, strong, taking each new hurdle in your stride. Much respect.

As for people being worse off than you? There will always be people worse off and better off. Mind you I think there are probably fewer people in the latter category? Anyway, it does not detract from your situation.

Make your best choice, and go for it. Your luck has to change some time!

atb to you and D.

dave

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

User

Posted 28 Apr 2018 at 08:40

Hi Chris

Thank you for sharing your story over this time as the information and advice you share has been and will continue to be appreciated by many on this site.

Very best wishes to you.

Kevan

User

Posted 28 Apr 2018 at 09:40

Thanks for this message Chris. It sums things up nicely.

Best wishes to you, Ian.

Ido4

User

Posted 28 Apr 2018 at 11:33

Three years mid June for me and it’s far from over. I guess it will only get worse. I can’t think of many men who have had it tougher than you Chris. You’ve been amazing and strong

If life gives you lemons , then make lemonade

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 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

If life gives you lemons , then make lemonade

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

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 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 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 17:56

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 20:36

Just sending best wishes and regards and respect from us both. Spent 7 hrs at hospital today getting a full body bone scan and stuck in the waiting room with an end-stage guy and his wife. It only seems to get bl**dy worse and worse doesn’t it !! Can they still remove your bladder Chris?? Is that still on offer ??

If life gives you lemons , then make lemonade

User

Posted 25 Jan 2019 at 20:46

Sorry to read that Chris. Sending good wishes.

Ido4

User

Posted 25 Jan 2019 at 21:20

Hi Chris,

Sorry to read that the figure is an "actual" value.

I don't know the answer to your question, maybe someone at the helpline can assist?

Fingers crossed for your test at 4 weeks.

dave

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

User

Posted 25 Jan 2019 at 22:30

Hi Chris Fingers crossed for you also and hoping that it's as you say just the poking and prodding that's caused the rise in your PSA. Would seem a possibility to me.

Best Wishes

Ann

User

Posted 26 Jan 2019 at 08:17

Just returning support Chris. Sounds like good advice above.

Hopefully just a blip

Good luck

Cheers

Bill

User

Posted 26 Jan 2019 at 09:49

Hi Chris,

Hope it drops back down soon. Good luck.

Michaela

User

Posted 26 Jan 2019 at 17:39

Thanks to you all for your support.

CJ I can still have the bladder removed but it is a major and risky operation, I joined a urostomy site and I know what we say about forums but many have to deal with leaking bags and stomas. Many also suffer with phantom urges and pelvic discomfort. The SPC is an inconvenience but is manageable.

Kentish , what a trooper you are.

Lyn

Not quite in panic mode yet, disappointed yes. I follow John's progress with great interest and as Bri says it is reassuring to see his results. Do you have a view on the elevated PSA being caused by the op ect?

Thanks again to you all Chris.

User

Posted 27 Jan 2019 at 09:13

Hi Chris

Just adding my wishes that this is a blip.

User

Posted 22 Feb 2019 at 16:21

One month on from the last PSA and a slight rise from 0.10 to 0.11, not much but would have preferred a slight drop. So 20 months on from SRT I would have hoped for something lower. Onco nurse has suggested three month testing and see onco if it gets to 0.2. Main thing still here still moaning.

Thanks Chris

User

Posted 22 Feb 2019 at 16:25

Heres hoping is stablises Chris. Lets keep each other informed on clinical opinions as it looks like we will be getting tests at the same time

Bri

Edited by member 22 Feb 2019 at 16:26 | Reason: Not specified

User

Posted 22 Feb 2019 at 17:17

Gutted for you but all is not yet lost

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

User

Posted 22 Feb 2019 at 18:17

Sorry to read this Chris.

Ido4

User

Posted 23 Feb 2019 at 13:41

Sorry mate. Lets hope it is still a blip.

User

Posted 23 Feb 2019 at 23:31

Hoping that this is a blip too Chris, love your attitiude

love Devonmaid xxx

User

Posted 28 Feb 2019 at 08:04

Thank you all for the support. So Monday evening I went for my follow up appointment with the urology consultant who is injecting my bladder with Botox. Given the state of my bladder he was surprised that the Botox had actually have any beneficial effects on the spasms and continence. Access to the bladder was quite difficult and at one point during the procedure he did consider abandoning the process. The radiation and or previous treatments have left me with a very rigid urethra and bladder neck. The shrinkage to the bladder also makes manoeuvring of the scope difficult. We may try accessing the bladder through the SPC next time.

We discussed bladder removal etc but he is concerned that possible radiation damage to the bowel would compromise the formation of the drainage arrangement and I would then be left needing a alternative way of draining the kidneys. So I am going to keep the SPC.

A bit of advice from the consultant, never have an SPC changed on a Friday afternoon, try to get it changed mid week and in the morning. If the replacement SPC will not go in, get to a urology department or ward within an hour, do not go to the emergency department.

The consultant also suspects that the prodding and poking of the procedure may have elevated the PSA results and the repeat test was probably taken too soon after the Botox procedure. I am not totally convinced but I cannot do anything about that so I will patiently wait until the next test in three months time. One thing I have learnt from the whole journey is to be patient and not get over stressed with the situation. If you can resolve a situation get on and do it , if you can't make the best of it.

Thanks again for all your support and thank you to Prostate cancer UK for providing this forum, it may have some glitches but the pros far outweigh the cons.

Thanks Chris

Edited by member 28 Feb 2019 at 08:05 | Reason: Not specified

User

Posted 05 Jun 2019 at 17:25

Update

5/6/2019 PSA 0.11, so no change. Botox to the bladder is starting to wear off but just waiting for a date for repeating the process. Now five years from RARP and two years post SRT. Still here still moaning.

Thanks Chris

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