4 weeks after RP surgery

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

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

- 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.

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

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

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 .

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

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