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
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User
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
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User
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
Christ on a bike.
I am never going to complain again.
L xx
User
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¬ 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
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
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
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
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"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
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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
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
You’re a trooper Chris. Best wishes with it all.
If life gives you lemons , then make lemonade |
User
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
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
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
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
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
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
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
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
Chris
I am so sorry you are still going through such an ordeal. Hope you are around that corner now.
Xx
Mo
User
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
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
Glad to hear your situation is improving, Chris !
Fiona.
User
really pleased for you Chris all the best Andy
User
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
Phew...great news Chris
Bri
User
Originally Posted by: Online Community MemberCB
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
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
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
Xx
Mo
User
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
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
Mo
User
Hi Chris pleased for you on the PSA results hope the other improves as well enjoy xmas Andy
User
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
Fingers crossed for you Chris.
Hope all goes well
We can't control the winds - but we can adjust our sails |
User
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
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
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
Hi Chris,
Hope everything goes well and things are much better for you.
All the Best,
Steve
User
Hi Chris..fingers crossed this sorts it at last for you
Bri
User
Only just seen this... Hope all went well Chris.
KRO...
User
Fingers crossed this time is the last x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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.
xx
Mo
User
Hope all went well.
Thank you for all the help and encouragement you give.
Best wishes
User
Hope all went well, Chris and you start flowing at full rates again soon!
Paul
Stay Calm And Carry On. |
User
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
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
DM
User
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
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
Xx
Mo
User
Sorry to hear of your troubles Chris hope things improve for you ..All the best mate Andy
User
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
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
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
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
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
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
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
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
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
Reading all this made me squirm. You have had an awful ordeal, hope solutions are found quickly.
Paul
Stay Calm And Carry On. |
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Good luck mate. Hope all goes well
You have made my eyes water
Don't deny the diagnosis; try to defy the verdict |
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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
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
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
Thanks Chris
John won't let me speak about this thread, it's too painful a memory. I do sometimes go on a rant about what happened, but mostly I am glad that he had an SPC and he can live fairly happily with it. It's definitely better than going into retention. I am always hoping you'll come out the other side with everything working well.
Lots of love
DM
Edited by member 26 May 2016 at 22:31
| Reason: Not specified
User
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
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
Chris
I truly hope that you get some stability now, heaven knows you have had the most turbulent times , you always deal with everything so calmly and stoically. You continue to support others even when your own journey has been horrible at times.
Thanks for all your kindness and support
xxx
Mo
User
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
Chris
I am so sorry to read this after all you have been through. Is there any chance of the psa rising because of infection.?
Several folks asked after you this weekend. I hope we can all get together soon.
Xxx
Mo
User
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
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
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
Fingers crossed it's either infection or all that messing about with catheters and dilators? Hoping things settle down for you.
Rosy
User
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
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
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
sorry to read of the PSA result Chris hopefully a blip due to your other problems, all the best mate Andy
User
Chris,
Sorry to read this.
Can only repeat what others have said and hope this is a temporary blip.
KRO...
User
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
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User
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
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
hope its good news today Chris, take care Andy
User
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
Ouch Chris, you have our sympathy. Hope it settles down again quickly.
Lots of love Devonmaid
User
Hi Chris you really have been through it. So glad to hear though nothing nasty. Jx
User
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
User
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
Hope it's sorted the problem now. But where's the lego man??
User
Hi Chris,
Glad you got things sorted. Lets hope for a quieter time now, you've been through enough.
All the Best,
Steve
User
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
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
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
Need another Newark to celebrate
it's only clip migration
TF
:-)
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
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
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
User
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
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User
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
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
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
Hi Chris not sure if you got my reply to pm as in box full. No problem, take care jx
User
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
good news on the PSA Chris ,hopefuly everything will settle down for you shortly , take care Andy
User
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
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
Great news about the PSA results, Chris. Long may they continue to be good
Take care,
Steve
User
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
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
User
Great news on the PSA Chris.
User
Good news on the PSA Chris.
KRO..
User
Hi Chris hope all settles down soon, good news on psa. Jx
User
User
Fantastic news Chris, well done so happy to read your news.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
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
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
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
Edited by member 25 Oct 2016 at 17:58
| Reason: Not specified
User
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
Hi Chris
My turn to wish you luck. Hope all works out with your latest procedure.
Brian.
User
Really feel for you Chris everything crossed for you .Andy
User
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
User
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
Pleased you have got the catheter removed Chris , hope things improve for you .Take care Andy
User
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
Sorry to hear of your continuing struggles Chris. Hope with the catheter out things will settle a bit.
User
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
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
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
Sorry to hear of your latest situation, Chris.
I hope a successful solution can be found for you ASAP.
Best wishes,
Arthur
User
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
Chris, wishing you all the very best!
User
Hi Chris.
Sorry to hear the news mate.
Hope something can be found to help you.
Cheers.
User
Hope it all goes well Chris and the RT will go better than you expect, all the best Andy
User
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
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
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User
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
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
Hope all goes well with your latest treatment plan Chris
Best wishes,
Arthur
User
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
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
Hi Chris
Welcome to team Jamie great bloke for heated discussions
Hope all goes well
Si
Don't deny the diagnosis; try to defy the verdict |
User
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
Good luck, Chris.
Hug,
Lola.
User
Very, very best wishes to you Chris!
User
Hope all goes well for you and that you get a good result.
User
Fingers crossed for you Chris.
dave
Do all you can to help yourself, then make the best of your time. :-) |
User
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
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User
I'll be thinking of you Chris. Hope it goes well
If life gives you lemons , then make lemonade |
User
Best wishes, hope it all goes well.
Sandy
User
User
Keeping my fingers crossed for you, Chris
Steve
Edited by member 08 Apr 2017 at 12:50
| Reason: Not specified
User
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
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
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
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
Keep smiling Chris, I know, like me, you tend to be a glass half full person so keep positive
User
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
User
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
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
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
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User
Well done Chris. They told me any side effects would peak about two weeks after the RT ended
Enjoy the summer ☀️☀️
User
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
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
Best wishes as always Chris.
If life gives you lemons , then make lemonade |
User
Hi Chris hope things settle down quickly for you All the best Andy
User
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
Yay Chris. Hopefully well worth it I'm sure. You're a trooper mate.
If life gives you lemons , then make lemonade |
User
That is so good to see - congratulations x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
User
User
User
Well done Chris.
Very pleased for you.
We can't control the winds - but we can adjust our sails |
User
Top news Chris! Chuffed to rocks for you!
User
Great news Chris. It's a great feeling isn't it.
All the best,
Kevan
User
Fabulous news Chris
Keep on rocking
Paul
User
User
Woo hoo! Fab news indeed...
User
User
Fandabidosie .
Brilliant result .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
That's wonderful news, Chris.
Really pleased for you.
Steve
User
Oh wow, so delighted to see this news.
User
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
x
Do all you can to help yourself, then make the best of your time. :-) |
User
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
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
Sorry to hear about your latest situation, I hope they can find a good resolution for you soon.
Best wishes, Arthur
User
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
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User
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
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
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
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
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
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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.
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User
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
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
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User
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
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User
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
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
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
Thanks for this message Chris. It sums things up nicely.
Best wishes to you, Ian.
|
User
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
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
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
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
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
All the best for appointment today Chris.
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Hope the appt has gone ok Chris
Bri
User
hope Your app went as well as you wanted it go Chris
Viv
X
The only time you should look back is to see how far you have come
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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
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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
And the support you give others has been fantatsic too xxx
User
Well done, Chris. Keep fighting and have a great Xmas.
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
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
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
Sorry to read that Chris. Sending good wishes.
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User
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
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
Just returning support Chris. Sounds like good advice above.
Hopefully just a blip
Good luck
Cheers
Bill
User
Hi Chris,
Hope it drops back down soon. Good luck.
Michaela
User
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
Hi Chris
Just adding my wishes that this is a blip.
PP
User
Hi
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
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
Gutted for you but all is not yet lost
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sorry to read this Chris.
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User
Sorry mate. Lets hope it is still a blip.
User
Hoping that this is a blip too Chris, love your attitiude
love Devonmaid xxx
User
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
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
User
Great news on psa chris. Hope you’ve reached a more steady , comfortable place !
If life gives you lemons , then make lemonade |
User
User
That’s good news.
Long may you be here moaning! You’ve earned the right.
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Seems we are both on a plateau at the moment Chris. I’m not having a PSA test for 6 months. But will keep an eye out for your 3 monthly result which I hope dips
Bri
User
Glad to hear the good PSA news Chris and hope your other issues are still improving.
Cheers Bill
User
Hi Chris,
Could that result be a blip, different machine, recalibrated machine etc? Or is it in line, ish, with your other results? I don't know what level they start to worry at? I know I start to worry at any rise.
dave
Do all you can to help yourself, then make the best of your time. :-) |
User
You posted in Feb that the nurse had advised you to have 3 monthly tests so was there a result in May or did that test get missed?
Either way, you are aware that 0.22 is significant for a man with no prostate. All you can do is wait for the next test result and see what onco suggests ... if they are still saying in October “too low for scans” you will have a number of us supporting you to challenge that! PSMA, gallium, choline 68, FACBC - more sensitive tracers are coming along all the time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
It's usually me that posts 'some oncos wait until 5, 10 or even higher' 😂 However, that is for men who will have no other option but long term HT and possibly chemo. I think it is worth a detailed scan as early as possible after October just in case there is an isolated met that can be zapped unilaterally. That's what Mr B intends to do when John gets to 0.2
Edited by member 01 Aug 2019 at 20:50
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
John just ignores it all. Drives me mad sometimes. We were having a conversation today because a dear friend of ours has been diagnosed; the nurse had said to him "if you have surgery first, you can still have RT later if needed." I said something like "that's flawed thinking; if you need salvage treatment, your chance of remission drops significantly."
John sat quietly for a minute or two and then said "so where does that leave me?" ... I don't know where he goes when we are at appointments but he ain't in the room :-/
There is always the exception - Ulsterman's met was spotted at something like 0.03!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Does seem quite strange deep down that I’m not being offered another PET scan even though we have one in the car park at Southampton now. My psa must be roughly 200. I think it’s because deep down he knows I’m not keen on treatment anyway. We are sticking to six monthly bone and CT only. Not even been offered full body MRI which I hear are good. My kidneys have taken quite a knock blamed on the contrasts and PET injections. Part of me likes it this way ( got the whole summer to enjoy ) but the other half realises I could just get very ill very quickly which is worrying me.
If life gives you lemons , then make lemonade |
User
Hi
Got my latest result yesterday, down from 0.22 to 0.19. next test in 4 months.
Thanks Chris
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Well it’s wandering around a bit Chris isn’t it ? But still relatively stable yeh. Easy to say don’t worry. Keep us informed ok
If life gives you lemons , then make lemonade |
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Sorry it has risen a bit Chris. Let us know how you get on with the oncology nurse.
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Positive vibes being sent your way
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Bullocks - sorry to see this.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sorry to see your latest result Chris, hope you get some more positive news in your telecon.
Arthur
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Hi Chris, just picked up this thread, sorry to read your PSA has been on the rise. You really don't deserve this cr*p mate! Stay strong & I hope things improve soon.
All the best. Steve
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Sorry to see this rise Chris. Still in the below 1 club though. Hope the conversation the oncologist nurse is positive
Bri
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Sorry you now have more to worry about Chris. Hope the appointment goes as well as possible
Good luck
Cheers
Bill
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Hi Chris,
Sorry to hear about your PSA rise. Any news like this is not what you want to hear.
Thinking of you both.
Steve x
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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You wonder where they come up with these ideas when there is a fairly clear statement if what defines BCR after prostatectomy. Ridiculous.
My GP signed off my 0.3 initial recurrence PSA as within normal range, hadn’t even looked at my notes!
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Originally Posted by: Online Community MemberWent to GP today for BP check. The nurse tells me I haven't got BCR until PSA has reached 1, that's why they don't scan until it gets to 1. Think it's time to change surgery.
Thanks Chris
The other year one of my surgery nurses heard me asking the receptionist for a blood form for my PSA test. The nurse said you don’t need to do a PSA test as you haven’t got a prostate. It really makes my blood boil
Bri
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I was told also that they won’t do anything until or if it reaches 1.0 but did not say anything about BCR.
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Hi Chris
Sorry to hear this. Keeping fingers crossed for you.
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Any rise isn’t good Chris but hopefully it won’t start shooting off the scale anytime soon. I suspect the tel conversation won’t bring any surprises. Another test in 4 months?
Take care
Bri
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Doesn’t seem too bad Chris. Keep the faith
If life gives you lemons , then make lemonade |
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Okay, breathe. I don't know where the nurse got a doubling time of <6 months from but I have just put all of your results for the last 2 years into the MSK calculator and your doubling time is 17.1 months with a PSA velocity of 0.1/year
On one hand that gives you lots of breathing space but on the other, that seems to me to be a very long time to wait for a scan. Perhaps it would be better for peace of mind to push for a scan sooner rather than later?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris, it doesn’t look too bad from where I am but any rise is worrying, it’s a case of where are the little sods and what are they doing!
Keep strong and ask Onco for that scan, I asked and got ignored, Onco booked one, and he got ignored by Scan team!
Don't let it get as bad as mine, through lack of help from Oncology team. (Mets in 22 places)
Chris.
Edited by member 04 Jun 2020 at 09:12
| Reason: Not specified
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Hi Chris, sorry to hear this. Hope you can get a scan organised to see what’s going on.
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Hi Chris
Hope this development doesn't cause you to much worry. Hope you get a scan to put your mind at rest and then hope the results are favourable.
Good luck
Cheers
Bill
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Ido4
I have got a bone and CT scan coming up in the next few weeks. Saw my onco today who came across as very anti pet and psma type scans at anything below a PSA of 8.
Thanks Chris
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CJ
I did bring up your type of situation where scans do not pick up anything. The scans are free and are a possible prelude to other things.
Thanks Chris
Show Most Thanked Posts
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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
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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. :-) |
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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 |
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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 |
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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.
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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
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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
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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.
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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
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Chris
I am so sorry you are still going through such an ordeal. Hope you are around that corner now.
Xx
Mo
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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
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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. |
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Thank you all for your messages and support it is appreciated. I have edited my original post and added the following.
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.
I would not suggest for one moment that my actual treatment has been poor, I think I was just unfortunate that my body did not do what is the norm. The actual Urology department is full of superb staff, right from the receptionist up to the consultants and the urology robot clinic nurses are all brilliant. The only let down was the procedure of getting back into hospital following the blood loss. Hopefully by mid November all will be back to normal and a distant memory.
I saw one of my urology robot nurses yesterday and she has said not to start worrying about the PSA rise, it is a very small rise but I will revert back to three month testing or less and not get passed to my GP just yet. She said the recent surgery and infections etc. could have a bearing on the rise.
Like I have said before I am in a better place medically than many on here and my plumbing problems are trivial in comparison to many of our community.
Not sure if this applies to all NHS trusts but we found out yesterday that at our hospital parking is free for all cancer patients. The urology nurse signed a form and within minutes we had a three month parking permit.
Thanks Chris
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Christ on a bike.
I am never going to complain again.
L xx
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BACK ON TRACK ???
Well after 90 days I am again bag and pipe free. Almost back to normal, continence just about regained, volume getting better, flow rate 20mls/sec.
Sildenafil having an effect and a stockpile of muse to use, struggled to get the applicator past the catheter.
Another PSA in two weeks fingers crossed.
Thanks Chris
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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. :-) |
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Glad to hear your situation is improving, Chris !
Fiona.
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really pleased for you Chris all the best Andy
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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
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Phew...great news Chris
Bri
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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
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Originally Posted by: Online Community MemberCB
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. :-) |
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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 |
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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
Xx
Mo
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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¬ 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.
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CJ PB
The clip migration is quite rare something like 1 in 500. Not sure how you work out the odds for two migrating. Strictures are reasonably frequent but I have not come across too many guys with them.
I think were were all brave to have an operation or RT or Barchey etc when we did not feel ill, knowing we risked life changing side effects.
My follow up operations were no brainers as there was a symptom that needed sorting. Being looked after by a superb Urology team helped and I am sure I will miss them when I get sorted.
CB
You are in trouble.
Mo
There was worse that involved a nappy change and a baby daughter with wind and diarrhoea.
Thanks Chris
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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
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BACK ON TRACK ?
Two years ago today I heard those mind numbing words “ I am sorry to say that you have prostate cancer”. When I look at some of the recent posts I realise how fortunate I really am.
After twelve months of consistent 0.03 PSA results the 18 month test was a disappointing 0.06. Two recent PSA tests came back at 0.04 and 0.05 so at least a fluctuation and not a steady increase. My consultant is not concerned at this stage. Unknown to me I was carrying the pseudomonas infection for quite a while and probably had the 18 month test whilst carrying the infection, this may or may not have had an influence on the reading.
As regards the incontinence, I was almost dry 14 days after the RARP in April 2014, the Dilatation in August 2015 has left me incontinent, I have bad days and nightmare days, I have been using the sheath system “Bard care Spirit” not Coloplast /Coveen for the last three days and the difference is incredible. Not only is it better to leak into a bag it also improves the part of bladder retraining where you try to hold the urine for the extra minute. No major accidents to worry about.
My consultant pulled a face when I told him I was using the sheath system, but did accept my view that it is improving my state of mind and quality of life. Although the incontinence nurse said it was becoming the gold standard for treating incontinence the consult said urologists regularly see incontinence get worse for post RP patients as they come to rely on the bag. I will be having more bladder pressure test and cystoscopies in the next few weeks to see why things are not working correctly.
Bri, I did listen to your advice, but was persuaded things could be improved.
I have a stock pile of Muse in the fridge and now have the all clear to restart the ED rehabilitation.
As I frequently say to people at least I am still here to moan about things.
Thanks Chris
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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
Mo
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Hi Chris pleased for you on the PSA results hope the other improves as well enjoy xmas Andy
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This afternoon I will be having my sixth general anaesthetic and sixth urethral procedure in the last 21 months. I say procedure as opposed to dilatation because I am expecting it to be more a removal of a foreign object rather than a stretch of the bladder neck. Following a slow decline from 12 mls/sec to 5 mls/sec in the flow rate, a cystoscopy two weeks ago restored the flow to around 11mls/sec, they could not get into the bladder and one of my consultants still wants to carry on with today’s procedure, I now have two consultants, am I being greedy ? I think the odds of finding a third migrated clip are about the same as Leicester winning the premiership and we all know what happened there.
It is now almost 25 months since my robotic assisted radical prostatectomy, I actually met my robot last week at an open day of our local urology department, the robot was not quite as big as I thought it would be. My PSA has slowly risen from 0.03 to 0.07 a few weeks ago, still good but I would have preferred it at a constant 0.03, the next test in July is eagerly awaited.
Following a trip to the GP about itchy skin we suspended the daily 100mg of sildenafil two weeks ago and the itching seems to have stopped. Although I cannot get an upright erection, with stimulation and no chemicals I can achieve about 90 per cent of the pre-op size, not bad for a “supposedly” non-nerve sparring Op. As I keep telling people you do not need an erection for vaginal intercourse and it is wonderful.
Continence has stalled at around 3-5 mls a day and I think I can live with that and I am not sure an AUS would, A be fitted at such a low leak level and B might still leak a little anyway.
If I could turn the clock back would I have surgery, one hundred percent yes. For those who might be considering surgery do not be put off by my experience, there are many guys who have had a more straight forward journey. At three months post op I had been back at work for two months, was completely dry and having fun getting around erectile dysfunction, At fifteen months life was almost back to normal until the urethra was punctured.
As I have said before I am still in a good place and far better off than many of the guys and girls on here. I admire the resolve and optimism you and your ladies give to the rest of us. Twenty five months ago in April 2014 one of our member’s husband had just been diagnosed with PCa, sadly we lost him earlier this year, how cruel life and this disease can be.
Thanks Chris
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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
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Fingers crossed for you Chris.
Hope all goes well
We can't control the winds - but we can adjust our sails |
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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.
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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 |
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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 |
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Hi Chris,
Hope everything goes well and things are much better for you.
All the Best,
Steve
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Hi Chris..fingers crossed this sorts it at last for you
Bri
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Only just seen this... Hope all went well Chris.
KRO...
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Fingers crossed this time is the last x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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.
xx
Mo
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Hope all went well.
Thank you for all the help and encouragement you give.
Best wishes
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Hope all went well, Chris and you start flowing at full rates again soon!
Paul
Stay Calm And Carry On. |
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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
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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
DM
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Yet another disaster went into retention, back in hospital, they tried another dilatation without anaesthetic but bailed out, just waiting to see if another SPC is going to be fitted.
Hey ho such is life
Thanks Chris
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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 |
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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
Xx
Mo
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Sorry to hear of your troubles Chris hope things improve for you ..All the best mate Andy