I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

4 weeks after RP surgery

User
Posted 19 Aug 2018 at 07:56

Hi


Not sure where to start or what to ask?


At the age of 55 this has come as a right shock, but as i have read, life goes on and you have to learn to cope, but how?


My mood swings are erratic, slightest thing can make me angry, 


As title suggests four weeks after surgery, not sleeping much, jumping legs, is this down to the Cialis 20mg twice weekly? And now blood and small clots in my pee, 


I know its very very early days, any advice gratefully accepted 


Cheers Andy

User
Posted 12 Oct 2018 at 06:44
The main thing to remember with forums is that they are populated by people who are seeking answers. This skews them towards bad news stories as the guys who are cured don't post much.

User
Posted 06 Nov 2018 at 21:16

STUKNO


Had my robotic op end of June and my recovery has mirrored yours blow by blow. I am also dry after 3 months, was a surgeons delight a i followed the recovery plan by the book and was luckily enough to take 3 months off work to recover, my boss said you been here for 20 years its the least we can do for your loyal and hard working service. At the age of 56 it was a great shock as had no real problems, i was persuaded by a friend to get tested. My family and i will always be grateful we had the discussion. 


Tricks of the trade:


After your op set loads of min goals it makes you feel so better:


Waking up after the op


Seeing your wife again


Filling your first catheter


Eating your first meal (well part of it)


Drinking your first jug of water (plenty more to come)


Getting on your phone again again.


Getting some sleep the first night


Eating all your breakfast


Having the Canula out


Getting out of bed


Having a wash and shave


Self injecting (28 more to come)


Walking out of hospital the next day


Getting home (following a uncomfortable car journey thanks to the many pot holes)


Sitting in my favourite chair


Seeing my kid and grand kids


Filling my first small wee bag and empty it ( the first of many)


Enjoying the start of my high fibre diet.


First sleep in my bed (leave the little bag in place and connect the night bag on the bottom, then place the big bag in in a mop bucket so you can get up at night and walk around.


Emptying the first night bag (how much wee)


First shower (ah so much better)


First walk around the block (2nd day home and more regular walks each day, waling 2 miles after week one and smaller walks during the day)


First poo after after day 4 (with a big cheer from the toilet and the wife laughing her head off when i came out)


First walk to a cafe at a local church (with catheter attached and emptied by road side down a road drain - did  i laugh you bet)


Walk to town and back to the Costa Coffee (with catheter)


Day 9 - TWOC trial without catheter - passed but control poor, had a bottle in the car for trip home!!


Filling my first pad - The first of many ha ha ha


Recording my daily leakage on a spreed sheet with lots of other subject boxes (well i am at hoe doing nothing)


Walking further and faster


Washing the cars and Caravan (boy o boy did i stress leak or what but job done and sleep)


Cut the grass


Clean the windows


Clean and seal the block paving (over 3 days)


First PSA test post op (less than 0.01 Yes Yes)


See the consultant - i already forwarded my spreadsheet!


See Physio - i already forwarded my spreadsheet!


Experimenting with Viagra, and vacuum pump hit and miss but 'work in progress' always glad to practice!


Post op 7 weeks driving ( did'nt need to drive i walked every where and lucky the wife drives)


Post op 8 weeks away with the touring caravan - we always had a toilet with us i just pulled over and hopped in the van!


Post week  9 - back at football to watch Oxford United first game of the season - and use of the disabled toilet - no quing for me!


Post op week 12 back on my push bike, feed up with walking!


Post op week 14 Back at work Mornings only with working from home pm for two weeks - buzzing and sleeping so greatto be back!


Post op week 16 Back at work full time still buzzing


Post op week 18 PSA test still less than 0.01  'GET IN'


Today - Back in hospital colonoscopy and HALO op for my piles, back home Colonoscopy all clear and HALO op a success. Now for a couple of days rest! Surgeon said back on bike after three weeks - how good is that.


So these were my Goal, i was lucky enough never to have a bad day only positive ones. I now who are my true friends are now and my family support was huge especially my wife of 36 years, love her to bits!


As for life always glad to wake up and nothing really phases me on a day to day basis life is to short. Once you have touched by the big 'C' Family happiness and enjoyment of life is so important, Roll on retirement at 60 we have so much planned (now brought forward)


Thanks for reading and hope it will help someone. Any questions please ask


Mark


   


 


 


 


 


 

User
Posted 19 Aug 2018 at 11:25
Hi Andy. Click anyone’s picture to read their profile. You haven’t posted any data about your pre op psa , your Gleason score , margins or T number etc.
If it helps I was 48 at surgery and had a total breakdown and ended up in hospital for 15 nights. I’m now incurable but essentially life would be really good if they’d got it all out and earlier. I’m fully continent and have full erectile function using 5mg Cialis and I’m 3 1/2 yrs post surgery. So life can be good again and you mustn’t give up using a pump to keep your penis tissue normal from around 12 weeks post op. And maybe try 5mg daily Cialis. Did they save your nerve bundles ? Give us more info and the experts will be along. Good luck and recovery

If life gives you lemons , then make lemonade
Show Most Thanked Posts
User
Posted 19 Aug 2018 at 11:25
Hi Andy. Click anyone’s picture to read their profile. You haven’t posted any data about your pre op psa , your Gleason score , margins or T number etc.
If it helps I was 48 at surgery and had a total breakdown and ended up in hospital for 15 nights. I’m now incurable but essentially life would be really good if they’d got it all out and earlier. I’m fully continent and have full erectile function using 5mg Cialis and I’m 3 1/2 yrs post surgery. So life can be good again and you mustn’t give up using a pump to keep your penis tissue normal from around 12 weeks post op. And maybe try 5mg daily Cialis. Did they save your nerve bundles ? Give us more info and the experts will be along. Good luck and recovery

If life gives you lemons , then make lemonade
User
Posted 19 Aug 2018 at 12:31

The clots post surgery are normal but if they block anything or are excessive call the hospital for advice..


Re the mood swings - it's par for the course but again if they are excessive speak to your GP and get some help.


Diagnosis and treatment are a bit of a whirlwind and at some point we all get spat out and end up in a heap..


Good news is places like this can be a big help but it won't suit everyone


 


Re ciallis it doesn't suit everyone and I found it made me a bit miserable with blurred vision and vague aches and pains...


 

Edited by member 19 Aug 2018 at 12:32  | Reason: Not specified

User
Posted 19 Aug 2018 at 17:09
Hi Andy, I had pink/brown urine and lumpy clots around three weeks after my surgery. Should not be anything to worry about.

I am slightly miserable with Tadalafil, as it doesn’t seem to work on my diminished manhood anymore, and forget the side effects, there is no effect!

You might ask for Cialis 5mg daily, instead of 20mg, as that is for “an event”, i.e. “on a promise”.

You are a bit presumptuous to expect a raging hard-on so soon. After all, you have suffered a serious sexual assault by a licenced medical practitioner and probably his pet robot with your full consent. Remember those forms you signed?

Best of luck with your recovery!

Cheers, John.
User
Posted 20 Aug 2018 at 17:42

Hi Chris, Francij1 and Bollinge


thanks for the kind words and advice, i have updated one or two bits on my profile, 


basically Gleason score 7 3+4, grade group 2, one side of my prostate had 5 positive biopsy results the other side nil, went for the robotic surgery option


another couple of months before i see my consultant again, and for next psa level so here's  hoping for good news!!??


thanks again Andy

Edited by member 20 Aug 2018 at 17:51  | Reason: missed people with thanks

User
Posted 09 Oct 2018 at 01:06

Hi Andy,  my husband is nearly 53 so similar age to you.  He has the same Gleason score of 3+4. He is having robotic surgery on the 25th of this month. I would be grateful for any advice.  He is very nervous.  Thank you 

User
Posted 09 Oct 2018 at 11:18

Hi Touche,


I can fully understand as to where your husband is coming from, for me, who had never had an operation under general anaesthetic before, the thought terrified me! probably more than the actual procedure and outcome.


Talk to the Macmillan Nurses, they are a great support not just for your husband but for you, my wife was able to understand  how i would be feeling and what to expect in the days/weeks after the operation.


As Jacqueline my MacMillan Nurse stated on numerous occasions, and i did take it on board ish! don't Google or You Tube too much about Prostate Cancer and outcomes.


My Consultant [Name removed by moderator] sat me down along with the anaesthetist on the morning of my op, fully explained what was going to happen and how they would take great care and attention to the removal of the gland, but more importantly, especially how he would save as many of my nerve endings as possible, which was my main concern as well as getting rid of the cancer.


In hospital a total of 27 hours, 1 night stay then home, yes the catheter bag was a bit of a pain, but got used to it and to be honest was reasonably ok during the night, just had to sleep at a slightly different position.Was removed after 2 weeks,interesting, but not painful. I can recommend Home Bargains for men's pull ups, pads as good as Tena ones and cheaper, Lots of pain killers etc. Try to stay positive, yes some days/weeks after i felt like crap, what had i done etc. My emotions were all over the place, hence my first post on this site, the guys views who replied really did help. Time and patience has helped, yes pelvic floor exercises before and after a must. take each day, I set myself little targets, please tell your husband not to lift anything heavy for at least 10-12 weeks, (trying to cut the grass after 7 weeks was a big mistake!!) neighbours have been great, again talking about things really does help.


Now 11 weeks in, first blood test done and consultation since my op, PSA level recorded at 0.003, was told nerve endings on right hand totally spared, left partially, incontinence level manageable with 1-2 pads per day, so working on this and the other side effect of the surgery, again help,support from the MacMillan nurse re recovery has been fantastic, as well as the patience, love and care from my wife.


I am sure your husband will be strong and come through this, ask him to stay positive.


Hope the above helps in some way, take care of each other, i know i have said it a couple of times, but talking about things together really did help me.


 


 

Edited by moderator 09 Oct 2018 at 15:30  | Reason: Removed consultant name

User
Posted 10 Oct 2018 at 16:53

Thank you so much for taking the time to reply.  I think he finds all the mention of the side effects the worst.  He dreads the removal of the catheter but the nurse did say it will be relatively painless?  


I'm so glad you seem to be progressing well and being so positive about the whole thing.  We are going away for a week before the op to try and take his mind off it a bit. 


Thanks again for all your advice I will pass it on to him. 


Take good care xx

User
Posted 10 Oct 2018 at 17:09
Here's a short shopping list:
- a bucket to stand the night bag in
- waterproof sheet or the disposable pads you can buy in pet shops etc
- some pants (briefs not boxers) one size larger than he usually wears - some men find their testicles and penis swell alarmingly so briefs will provide some support
- track suit bottoms or joggers in a dark colour, preferably with a drawstring waist rather than elastic
- find out whether continence pads are provided in your area or whether you have to buy your own; it varies by postcode
- ask whether the hospital will send him home with Instagel- if not, try to buy some from your local chemist.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2018 at 17:29
As ever, Matron is clued up on all this stuff, and the only thing I would add is to look for a mattress protector = “waterproof sheet” for the inevitable nocturnal accident. They are on eBay for about a tenner.

I thought that as my surgeon is so wonderful, which he is, I wouldn’t need any waterproof bedding.

As a result we now have a map of Tasmania on my side of the bed.......😉

Cheers, John.
User
Posted 10 Oct 2018 at 17:39
Hi
At three and a half years down the line from Prostatectomy I endorse what everyone else has said. The removal of the catheter was instant and painless so tell your husband not to worry. Would I do it all again ? Yes I would.
Very best wishes
Gary
User
Posted 10 Oct 2018 at 17:45
I had RARP in Jan 2017 and absalutely dreaded the catherter removal. I imagined that if there was any resistance or pain as it past through the new joint between bladder and urethra that the nurse would not feel it and just pull a little harder. When the nurse arrived I said I prefered to remove it myself, thinking that I would be in control and stop if I wanted. She agreed without hesitation. She deflated the baloon by drawing the fluid out with a syringe and I just gently started to pull it out. It was a bit slippery to grip due to the lubricant on it but it just slid out very easily and I felt absalutly nothing until a slight sensation for the last 2cm or so. Nothing to worry about at all.

Cheers

Bill
User
Posted 10 Oct 2018 at 20:53

Tracey


My catheter got stuck on the way out, a senior nurse was called over and he swiftly pulled the catheter out. My surgeon is convinced it caused trauma and started the formation of a stricture in the urethra. Over four years later I am still having to deal with the consequences. Don't be put off having treatment by a few of us who have had problems. Just before the catheter comes out smile at the nurse and say "nice and gentle no yanking it out". I have had numerous catheters as part of ongoing treatment, I would describe removal as weird rather than uncomfortable and certainly not painful.


Hope all goes well.


Thanks Chris

User
Posted 11 Oct 2018 at 13:41

Andy 63 has pretty much said it all.


I had the robotic operation in mid June.  Coming home from hospital, a 40 mil journey by car the day after the op was the most painful aspect of the whole thing, I was glad to be home and had a couple of paracetamol.  The next 24 hours were a bit sore but after that recovery is pretty rapid. 


Catheter out after 9 days - painless.  


Incontinence.  Not when lying or sitting down but three pads a day to begin with. Pretty much the odd dribble now that's all. Incontinence is easily managed with Tena pads - other brands may be available ;-) and it hasn't caused me any concern or restricted what I do in any way.  The degree of incontinence does seem to vary quite a lot from reading reports on here.


ED or erectile disfunction is a work in progress. No signs of life yet but I haven't given up on anything yet. Loss of ability does rather strike at the core of how I see myself but with a supportive partner we are coping quite well.


 


Looking back on the whole thing I have found it difficult to accept that I have undergone fairly major surgery because the immediate impact of the operation was pretty minimal. I'm glad that its gone and grateful that the procedures are so advanced.


I found google / forums quite scary / depressing pre op but now wish I had done more research in that time so that I was better able to understand what is going on.


I wish you well


 


stu k

Edited by member 11 Oct 2018 at 13:42  | Reason: Not specified

User
Posted 12 Oct 2018 at 00:34
Interesting to hear Stu comment re wishing to have done more research to have better understanding of what was going on in the same thread that Andy63 says a specialist nurse advised more than once ‘don’t google’.

There are two camps of opinion here but I really don’t think in 2018 medical professionals should advise which one to be in..

They should keep advise practical and informative and stop putting people off finding out as much as they can and as Stu comments having a better understanding can never be a bad thing in my opinion .
User
Posted 12 Oct 2018 at 06:44
The main thing to remember with forums is that they are populated by people who are seeking answers. This skews them towards bad news stories as the guys who are cured don't post much.

User
Posted 12 Oct 2018 at 10:03

As I suggested in the first post, I found that googling before the op was a little daunting and I tended to steer away.   I didn't understand what the Gleason score was T2c N0,Mo etc, Finding out may be reassuring - or not but knowing is (for me) better than not.


On a more practical note, on the morning after the op, a nurse came round and offered me a laxative. I naively said that I haven't eaten for 24 hours and I didn't think that I needed one.  She shrugged and moved on.  I only found out later on this forum that the first bowel movement post op can be an issue and could cause damage.  In the event I got by with some discomfort but it was only much later did I realise that I had put myself at risk.


In my cause the NHS has been good but it is not infallible. After the catheter was removed at 9 days I was given 8 Cialis tablets but no real explanation of what they were for and indeed the quest for the information lead me to this forum - which threw light on  few things.  Hospitals will vary but -in my case- a certain amount of 'self management' of my case has been necessary, particularly in chasing up appointments.


I also find it reassuring to read the comments of others here who are on the same path and it helps to me to measure my own progress.


It is true that forums get more posts from people experiencing problems than success but on the whole I find this forum very helpful.


regards to all


 


stu k

Edited by member 12 Oct 2018 at 10:05  | Reason: spilling mistooks

User
Posted 12 Oct 2018 at 11:52

Hi


just wondering as to how much pain you are still having, especially the left hand side? 


and yes the old ED problem can and does get you down abit! to pump or not to pump, i know its early days, but!!


 


any advice,please

User
Posted 12 Oct 2018 at 13:10
I had my surgery on June 4th and I am not in any pain. There is a sensation at the base of my penis if I poke around it, but as some of my seven laparoscopic abdominal puncture wounds have yet to heal completely, I guess it’s probably just the same inside.

The worst pain for a couple of minutes was when the the three drains were removed from my abdomen on day 2. The whole prostatectomy thing was surprisingly pain-free. I am indebted to the surgeon and the whole medical team.

Cheers, John.
User
Posted 05 Nov 2018 at 18:59

Hi to you all on this site, reading what you are all going through brings back memories of my own OP, 29th Sept 2016, catheter in for three weeks my surgeon said this helps the new join to heal without stricture, but reading other mens stories it seems the catheter can stay in for anything from 1 to 3 weeks, anyway the catheter came out after 3 weeks no pain whatsoever, then the fun begun, lots of leakage it really got me down until a guy on hear replied to my post, thats when it all changed, I said to my wife that I could not live like this peeing all the time with no control it was horrible, then when John said the first 4 weeks are the worst, he was right, things started to improve, now over 2 years I still wear the smallest pad for security, just small drips and dribbles, erections are almost normal but it took a long time, the best thing is PSA is undetectable, everything takes time, don'y rush anything, I did not drive for 3 months, don't strain when on the loo, and thanks to John, I hope this might help all of you that are going through it

User
Posted 06 Nov 2018 at 21:16

STUKNO


Had my robotic op end of June and my recovery has mirrored yours blow by blow. I am also dry after 3 months, was a surgeons delight a i followed the recovery plan by the book and was luckily enough to take 3 months off work to recover, my boss said you been here for 20 years its the least we can do for your loyal and hard working service. At the age of 56 it was a great shock as had no real problems, i was persuaded by a friend to get tested. My family and i will always be grateful we had the discussion. 


Tricks of the trade:


After your op set loads of min goals it makes you feel so better:


Waking up after the op


Seeing your wife again


Filling your first catheter


Eating your first meal (well part of it)


Drinking your first jug of water (plenty more to come)


Getting on your phone again again.


Getting some sleep the first night


Eating all your breakfast


Having the Canula out


Getting out of bed


Having a wash and shave


Self injecting (28 more to come)


Walking out of hospital the next day


Getting home (following a uncomfortable car journey thanks to the many pot holes)


Sitting in my favourite chair


Seeing my kid and grand kids


Filling my first small wee bag and empty it ( the first of many)


Enjoying the start of my high fibre diet.


First sleep in my bed (leave the little bag in place and connect the night bag on the bottom, then place the big bag in in a mop bucket so you can get up at night and walk around.


Emptying the first night bag (how much wee)


First shower (ah so much better)


First walk around the block (2nd day home and more regular walks each day, waling 2 miles after week one and smaller walks during the day)


First poo after after day 4 (with a big cheer from the toilet and the wife laughing her head off when i came out)


First walk to a cafe at a local church (with catheter attached and emptied by road side down a road drain - did  i laugh you bet)


Walk to town and back to the Costa Coffee (with catheter)


Day 9 - TWOC trial without catheter - passed but control poor, had a bottle in the car for trip home!!


Filling my first pad - The first of many ha ha ha


Recording my daily leakage on a spreed sheet with lots of other subject boxes (well i am at hoe doing nothing)


Walking further and faster


Washing the cars and Caravan (boy o boy did i stress leak or what but job done and sleep)


Cut the grass


Clean the windows


Clean and seal the block paving (over 3 days)


First PSA test post op (less than 0.01 Yes Yes)


See the consultant - i already forwarded my spreadsheet!


See Physio - i already forwarded my spreadsheet!


Experimenting with Viagra, and vacuum pump hit and miss but 'work in progress' always glad to practice!


Post op 7 weeks driving ( did'nt need to drive i walked every where and lucky the wife drives)


Post op 8 weeks away with the touring caravan - we always had a toilet with us i just pulled over and hopped in the van!


Post week  9 - back at football to watch Oxford United first game of the season - and use of the disabled toilet - no quing for me!


Post op week 12 back on my push bike, feed up with walking!


Post op week 14 Back at work Mornings only with working from home pm for two weeks - buzzing and sleeping so greatto be back!


Post op week 16 Back at work full time still buzzing


Post op week 18 PSA test still less than 0.01  'GET IN'


Today - Back in hospital colonoscopy and HALO op for my piles, back home Colonoscopy all clear and HALO op a success. Now for a couple of days rest! Surgeon said back on bike after three weeks - how good is that.


So these were my Goal, i was lucky enough never to have a bad day only positive ones. I now who are my true friends are now and my family support was huge especially my wife of 36 years, love her to bits!


As for life always glad to wake up and nothing really phases me on a day to day basis life is to short. Once you have touched by the big 'C' Family happiness and enjoyment of life is so important, Roll on retirement at 60 we have so much planned (now brought forward)


Thanks for reading and hope it will help someone. Any questions please ask


Mark


   


 


 


 


 


 

User
Posted 07 Nov 2018 at 05:22
Hi Mark, and thanks for writing all that, you have been in the wars. I am sure it will help many others.

The comment that chimes with me is “You know who your true friends are”. Once I was diagnosed with the Big C and the word got round, I had calls and texts from long-lost friends sympathising with me as if it was a death sentence (I have since been advised it is not 😁). Some still treat me with kid gloves and ask ‘Are you alright?’ in a sympathetic way.

Most surprising, two of my closest friends ‘came out’ and admitted they had PCa too! I was shocked.

Best wishes for the future.

Cheers, John.

User
Posted 04 Dec 2018 at 13:33

Hi I had my staples and catheter removed ,have faith in the nurse mine was very efficient and friendly ,the removal of the catheter is quick an painless.

 
Forum Jump  
©2019 Prostate Cancer UK