3 days post op

User

Posted 13 Dec 2018 at 17:51

Hi all,

Just to check in and let you know that Pete had the robotic surgery on Monday 10th. He was told before surgery that his bone scan was clear, and for that we are absolutely so grateful for. It was such a weight, wondering if this damn thing had spread or not. Pete was convinced he was riddled with it before the surgeon gave him this good news. So off he went to theatre, and I to work! It was a funny day, not one I'd like to endure again. Anyway, I got to see him later that day, the surgeon had been to see him and had told him that the surgery went very well, he did lose a bit of blood, which had the surgeon swearing a bit, but this clever man managed to spare the nerves on both sides, he said the lymph nodes were ok and that once he'd got the prostate out, it did feel a little hard on one side, but not what the MRI had indicated, he said that there was prostatitis in there, which is what the MRI may have been showing. So the surgeon said he is more inclined to go with the biopsy results which were Gleason 6, grade 1.

He then spent one night on the urology ward, which he said was fantastic. The nurses on there were outstanding, unlike some on previous admissions, on different wards/hospitals. I was able to take him home on the Tuesday evening.

The pain is very minimal, and I would say the only thing that is bothering him is the catheter. I went out yesterday and bought him the instillagel, which has helped take the edge off. The catheter will be taken out on Boxing day!

He has been taking fybogel since last Friday, but also needed senna post op, and I'm relieved to say "he's been". I think I'm more relieved than he is!!

So he is going to take it very easy for a good few days, and get himself fit and strong again. Our Christmas will be so much better not having this surgery hanging over us.

Thanks to everyone that has helped us, I can't tell you how it eased my thoughts.

Michaela x

User

Posted 13 Dec 2018 at 17:51

Hi all,

He has been taking fybogel since last Friday, but also needed senna post op, and I'm relieved to say "he's been". I think I'm more relieved than he is!!

So he is going to take it very easy for a good few days, and get himself fit and strong again. Our Christmas will be so much better not having this surgery hanging over us.

Thanks to everyone that has helped us, I can't tell you how it eased my thoughts.

Michaela x

User

Posted 13 Dec 2018 at 19:56

Very good news, Michaela. My hopes and good wishes for a rapid recovery and a very good Christmas.

Might I make a small suggestion? It would make following your “story” a lot easier if you were to create a single thread and post all your updates to it!

Cheers,

Chris

User

Posted 14 Dec 2018 at 14:49

so glad for you both,enjoy christmas now,wishing you both an happy and healthy new year

User

Posted 14 Dec 2018 at 14:57

That all sounds very encouraging!

The worst is now behind you...

Enjoy your Christmas

Best Wishes

Luther

User

Posted 12 Jan 2019 at 13:09

Glad he’s healing well from the op. It'sunusual to suddenly have overnight accidents.

Was he over tired at the time or under the weather?

Hope he doesn’t pee while he’s pooing with a semi!

Ian

Ido4

User

Posted 12 Jan 2019 at 13:13

Semi-erections while pooing are an involuntary reflex action rather than a sexual one; I am not sure that it is indicative of sexual function recovery as it involves a different set of nerves.

Re weeing at night, it could just be that he is starting to sleep properly again. In a deeper more settled sleep, his brain isn't yet getting the signals. This is probably a very temporary situation, all your indicators are good.

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

User

Posted 12 Jan 2019 at 16:12

ah yes - alcohol could be playing its part ... John has been continent since soon after his op but even he has issues if he has been drinking.

But I don't think it can be about drinking milk or tea; it makes no physiological sense since, if he is continent, his brain would wake him up at whatever time his bladder gets full. It sounds like the issue for your man is that he isn't quite at the stage where his brain wakes him up properly yet.

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

User

Posted 12 Jan 2019 at 16:59

I was very continent from day one luckily. I wore a small pad for 3 months but rarely needed to change it. It was a confidence thing tbh. A couple of nights after a few drinks and a deep early sleep I totally emptied my bladder !! Only a few times. Strangely last year I wet the bed 3 times over a few months despite not being drunk. I do have massive issues sleeping though and I guess when I really relax it can mean trouble. Very early days for you so don’t worry. My kind wife just put a bed pad under the sheet and said don’t worry. Not weed in ages at night

If life gives you lemons , then make lemonade

User

Posted 12 Jan 2019 at 17:44

I was totally dry at night from day one. Then for no apparent reason after about 8 weeks I think, I also had a complete bladder empty. Nearly two years on now and it has never happened again.

Cheers

Bill

User

Posted 12 Jan 2019 at 22:40

Hi Mr & Mrs L,

I think his urinary control recovery thus far is very encouraging, way ahead of most, a bit behind some from what I hear and read.

Maybe if there is a blip, then 2 incidents in close proximity indicates an issue other than to do with physical control? Was he tired, had he been exerting or over exerting himself before these episodes?

Regarding alcohol affecting the leakage, maybe it does have an effect on him, maybe not? I can have far too many beers and sleep through without issues. Don't even have to empty the bladder before morning exercises any more. I do have loss of control if I walk home from a pub late at night when tired. Leak like a sieve, almost no control. So I avoid that situation.

It's still very soon after the op, and he is very fortunate compared to most, and this can lead to elevated expectations where a hiccup is seen as a bigger issue than it is.

Once he/you identify what works for him and what works against him you'll have a better understanding of the matter?

Maybe try a night of enjoyable alcohol intake, see what happens?

Then try a night or nights of zero, but makes himself tired, and see what happens?

Then zero alcohol and no exertion, see what happens.

Just a thought. By trial and error you might identify what is helpful or not so?

But I reckon he is very fortunate at this early stage post op.

atb

dave

Edited by member 12 Jan 2019 at 22:41 | Reason: Not specified

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

User

Posted 13 Jan 2019 at 08:14

I disagree with lyn re the semi, any involuntary swelling down there is a good thing!

Re the drinking and pissing yourself this is definitely a problem, 2 years after my op with full continence even when lifting heavy weights etc I got "rather tipsy" on a night out with my then new girlfriend (getting married soon!) and I completely wet myself and didn't even know I had done it until we got outside and it went cold!! Combination of booze, dancing and being turned on is very dangerous post RP!!

User

Posted 06 Feb 2019 at 21:10

I had to fight for a whole year for daily Cialis. In fact any form of Cialis. Event doses didn’t seem to work yet a daily low dose did the trick. I was told I was imagining it which made us both very angry. Cialis is now really cheap in its generic form Tadalafil, so I don’t see the problem in prescribing it. But what do I know ? As for the pump , get something cheap until / if you sort the issue or are prepared to pay yourself. In my opinion cheap pumps are ok , it’s the rings that are very important to maintain an erection good enough to use for penetration. The rings from imedicare are £30 for three which last forever and would fit a cheap pump tbh. So it can all be fixed ??? I mostly sorted my own recovery and knew far more than my ED nurse who was mostly off sick. Who could blame him .... what a job for anyone.

You are still too soon post op to be hoping / expecting any serious recovery although your recent attempts seem amazing. Never give in with this or you willl lose it !

If life gives you lemons , then make lemonade

User

Posted 06 Feb 2019 at 22:53

Originally Posted by: Online Community Member

You may live in an area where the CCG has decided that pumps and daily cialis will not be prescribed.

You could get a pill cutter from the chemist, cut the 10mg in half and take it every 2 days. The starting prescription is supposed to be 2.5mg anyway, uploading to 5mg if there isn't a significant response.

Brill pathology :-)

Ah Lyn do you think it would be better to take 2.5mg every 2 days then? What do you think the nurses reasons were for supplying only 2 10mg tablets?

Mr L has rung her back today to ask for a pump, unfortunately he only got her answerphone, and she's notoriously bad for not returning calls.

No sorry, I meant starting dose of 2.5mg per day - if he cuts the 10mg in half and takes it every other day, he is getting the equivalent of 2.5mg per day. Since he has already had a semi, I guess it isn't going to be that important whether it is 2.5mg each day or 5mg every other day. Her reasons for only supplying 10mg tablets? My guess is that the CCG has instructed that this is the only dose allowed in your region; some CCGs have taken a view that they do not accept the medical evidence that daily dose improves recovery so they will only allow prescribing of 'event' dose. If it makes you feel any better, she is allowing you double what NICE says you are entitled to - in their wisdom, NICE have determined that men with ED as a result of prostate cancer or its treatment are allowed to have sex once per week so 4 Viagra tablets / 4 Cialis tablets / 4 Levitra tablets / 4 Caverject injections is all you are entitled to on NHS prescription. Just to complicate things, if you ask the ED nurse or GP for a private prescription, you lose your entitlement to ED treatments on the NHS (although I know some GPs are sympathetic and ignore that rule)

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

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User

Posted 13 Dec 2018 at 19:56

Very good news, Michaela. My hopes and good wishes for a rapid recovery and a very good Christmas.

Might I make a small suggestion? It would make following your “story” a lot easier if you were to create a single thread and post all your updates to it!

Cheers,

Chris

User

Posted 13 Dec 2018 at 20:18

thanks for your good wishes Chris, and I hope you and yours have a lovely Christmas too.

yes I never know which section to post in?

User

Posted 13 Dec 2018 at 20:29

That all sounds good for you both. Catheter out on Boxing Day is quite a Boxing Day present.

User

Posted 13 Dec 2018 at 21:06

Originally Posted by: Online Community Member

thanks for your good wishes Chris, and I hope you and yours have a lovely Christmas too.

yes I never know which section to post in?

Good news then Michaela.

Just update your original thread, rather than starting a new one. And please keep us up to speed as to his progress, so as to help others as I think we might have helped you.

Moreover, update your profile with any news or developments.

Christmas without a catheter? Nerves spared both sides? Who knows what goings on will occur at some point in 2019😉

Welcome to the ’Been there, had that, got rid, club’

I hope you can both sleep much more soundly now, as I know the psychological pressure you were under - well Pete will, once he has the bloody catheter removed in a few days.

Enjoy your Christmas.

Cheers, John.

Edited by member 13 Dec 2018 at 21:07 | Reason: Not specified

User

Posted 13 Dec 2018 at 21:15

thank you John, you have been very help, and kept the hope for me!

which post should I carry on on? Arghh , I’m lost?

what if you have different questions to ask from when I first posted? Sorry, this forum seems to be very complicated compared to others I’ve used.

User

Posted 13 Dec 2018 at 21:28

This forum section, “Localised cancer”, would seem a good one!

Cheers,

Chris

User

Posted 13 Dec 2018 at 21:53

so just carry on from here?

thanks Chris

User

Posted 13 Dec 2018 at 22:01

Sounds good to me!

Chris

User

Posted 14 Dec 2018 at 14:49

so glad for you both,enjoy christmas now,wishing you both an happy and healthy new year

User

Posted 14 Dec 2018 at 14:57

That all sounds very encouraging!

The worst is now behind you...

Enjoy your Christmas

Best Wishes

Luther

User

Posted 14 Dec 2018 at 16:49

Great news on the bone scan etc. I wish him a good recovery now and a very enjoyable Christmas to you both.

Ido4

User

Posted 19 Dec 2018 at 09:17

Thank you all for the good wishes, you're all very kind.

So we are now 9 days post op and Pete has started to get really bad low stomach pains, this is relieved by going to the toilet for a number 2. He says the pain is excruciating, is this just because everything is falling back into place, or should we be concerned? His bowel movements have been very good with no straining.

Thanks for any advice

User

Posted 19 Dec 2018 at 09:37

Michaela,

When they operate, they fill your abdomen with gas to move everything out of the way. From the sound of it (the pain being relieved by a bowel movement) it sounds to me as if it's this gas gradually escaping and everything getting back into place which is causing the pain. Obviously, though, you should give the hospital ward a ring (they should have given you a phone number?) if you do have concerns.

All the best,

Chris

User

Posted 19 Dec 2018 at 10:35

I believe it is CO2 they fill you with. I had awful shoulder pain for days. It is often referred pain which means the pain root is somewhere else but your nerves and brain get confused. As Chris says ring and check but make sure painkillers are to hand and be patient, it will pass.

User

Posted 19 Dec 2018 at 10:42

Call the hospital and check, make sure you are not palmed off!!

I got sepsis a week after my op the pain from that was excruciating. I was told intialy to take paracetamol!!

You shouldn't be getting ANY excruciating pain. Lots of severe discomfort maybe but excruciating pain needs a qualified opinion.

User

Posted 19 Dec 2018 at 10:58

Just rang the ward and they said it sounds like bladder spasms, and to take some buscopan. If no better to ring back in a couple of days. His temperature is normal and the pain is only bad for a few moments, then he opens his bowels. I'm pretty worried now after reading about your experience Franc. Should I ring the Gp's and ask for some antibiotics?

User

Posted 19 Dec 2018 at 16:29

Very bad GP if he/she issues antibiotics on the basis of a phone call. You have no evidence of infection. Sounds seriously like trapped wind to me!

User

Posted 19 Dec 2018 at 16:32

Originally Posted by: Online Community Member

Very bad GP if he/she issues antibiotics on the basis of a phone call. You have no evidence of infection. Sounds seriously like trapped wind to me!

AC

I'd go along with that AC ...especially as it goes away after passing a motion https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-wink.gif

Luther

User

Posted 19 Dec 2018 at 17:12

The Gp wanted to see him and has told him to up his buscopan. She’s given him some antibiotics, and is sending his urine off to the lab.

Hoping it is just a load of hot air, he is usually full of it! 😉

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