Robotic RP post op recovery

If it actually looks like red blood after 3 days then you should phone Urology. If it is obviously coloured urine then just keep an eye on it. At one point in my recovery , even though my wee was clear , I had an enormous full blood wee where I had overstretched my bladder ( beers at lunch ). It cleared up by the evening. Go with your common sense

I had claret urine for a few days and it was still rose on Catheter removal at 14 days post RARP. I would have expected you to have a visit from the district nurse as a minimum. Blood in urine can look worse than it actually is,but If in doubt always seek medical advice. I did get quite a few very red blood clots in the bag.

Thanks Chris

Post op care. This was same for us.I was in 33 hrs. I assume if support at home then no need for any contact.

See my profile. We were only 15 mins from hospital and son and wife both can drive. We had concerns as about 400 ml leaked from a keyhole incision. 1st night Bed was soaked and I woke up quite cold. Ie not the drain on left or centre incision.

The point being you like yourself don't know what's normal or not. We nipped a & e after ringing MDT contact. In my case it stopped after about 30 hrs. It was clear fluid. Seems the lymphatic drainage was backing up ! Again my stomach was distended and solid. You have fears of peritonitis in my case. I was told this does happen occasionally. .

To answer your query. See how it goes today.. ie mid afternoon. .This is assuming he has not overdone anything strenuous. Tried to shower too vigorous etc etc Has cleared bowels without straining etc. Has had steady input of water.. I filled the night bag to capacity. . One morning it was up the top tube. Also he has positioned the catheter in a fixed position and that should be pain free.

Obviously you should have notes about foley catheter. It has to sit comfortable in bladder, I left mine well alone and only leaked slightly with mucus and some blood when I had to push hard for first bowel. I hope I've given some idea what was normal to me. I did take a far amount on water on board that first week. No alcohol , no citrus drinks fizz and little caffeine. I was on no meds just those self injections anti blood clotting. I did very slow walks as although not in pain it was nearly 2 weeks before I could get back to normal walking speeds. I was emptying the small leg bags about every 2 to 3 hrs. Maybe I had too much hydration however I tried to keep everything moving. You can't overstretch bladder Julie at this point however much he has consumed unless the pipes are twisted or pinched. Ie gravity is letting the liquid flow. The bladder is having to get used to its new position. Ie lower down and obviously the nerves providing signals to the brain. My urine being very diluted. If in any doubt do get advice. Take photos and keep notes. Only you will know if it improving. .getting worse or about the same. I hope this helps a little. .. All the best. .

Edited by member 15 Feb 2017 at 10:17  | Reason: Not specified

So things are looking better today. Definitely more rose which has calmed OH down somewhat. I'm going to try and coax him outside for a 10 min stroll around the block today but not holding out much hope. Anxiety and OCD have him in a vice like grip right now. The next 6 weeks waiting for his post op PSA are going to be veeeery long at this rate.

Thanks Chris J. It certainly is a tough time. OH certainly wouldn't have left hospital given the choice, he tried hard to convince them he wasn't ready to go home. They had to call the Dr 4 times during the first night he was in such a state.
I will keep trying but at the moment I can't get him to do anything. He won't even watch TV because his OCD makes it too stressful. No walk for today either, I can't persuade him. Hopefully we'll get a good couple of hours later with the kids to distract him.

Well that didn't last very long. Eating has now also become a major issue. No food all day Saturday because, "I can't eat that, if I eat that I might die." WTF. No if you stop eating you might die. He managed roast dinner last night thank goodness because there were to many ingredients and too much on his plate to work out whether it might potentially kill him or not. I hate OCD. Last night I completely lost my temper and let rip. Felt crap after and still do but am getting increasingly frustrated that he is refusing help but thinks it's ok to pile everything on my shoulders. Not helped by it being half term, childcare is all over the place and I have more work than I can possibly handle due to the amount of time I've had off recently for his treatment. My boss is very understanding and has been great but at the end of the day the work still has to be done.
Rant over. Back to it for an hour before I give up and go bake a cake with the youngest.

Unfortunately Lyn I can't force him to accept treatment, he has to do that and at the moment he's not mentally in a position to do so. I think we need to let the current storm pass and then try again.
We have an appointment on Thursday to have his catheter removed and I'm going to see if the nurse can drop it into the conversation to him about getting some support linked to coping with his diagnosis and treatment. Maybe, just maybe, coming from a different angle it might work.
If not we'll just have to try something else.

Hi Chris, yes there's Macmillan at the hospital where we are going on Thursday. That was my thought process. See if I can get his nurse to put something in front of him. I'm going to give him a call tomorrow and see what he says, he is aware of his anxiety and OCD as it came up at his pre-op assessment.
Also his GP is aware and I have accompanied him to all of his appointments over the last few months so perhaps it's time for me to go and talk to him on my own.
I'm pretty new to all of this really because whilst he has certainly had issues for quite a few years it has been relatively low level and hasn't had the same impact as now. Over the summer last year we had a month that was pretty bad when I forced him to admit to his GP that there was a problem and he did take some medication for a short period but felt it wasn't helping so stopped. He was then just about coping and indeed recovering I would say until pCa reared its head in November/December. Then everything came crashing down. I think the dilemma he faces now is that he thinks his rituals are keeping him alive so how can he possibly stop with a death sentence hanging over him. (For anyone reading this he doesn't actually, his prognosis at this stage is about as good as it gets) and if he seeks help they will try and force him to stop thereby killing him.
Don't get me wrong he's not treating me badly as such, I'm just overloaded, and I know he feels terrible anguish at what this is doing to us all as a family.
Everyone is in bed now and it's time for me to self medicate. The only question is will it be Gin or red wine or chocolate. Perhaps red wine and chocolate.

Well we had a good giggle this morning. Catheter out yesterday and totally dry so far. So he says, "can we have a bit of an experiment". Ok I think. Anyway after a bit of stimulation he wakes up and a little more gets him to orgasm. Except he spurts pee everywhere!
"Got to be happy with that" I say. "Well I would be" he says "if I wasn't going to die".
Oh well can't win 'em all.
😂😂😂😂

Ha ha Chris. I had a feeling this post would tickle you.

I hope so too Lyn. For us I fear that is going to be the more difficult battle.

So happy to read you! Great👍👍👍👍

May good news continue for ever.

Lola

Fantastic! Let's hope it sinks in soon and you are both able to enjoy the good news...

Great, Paul! So happy for you.
My husband is going through robotic RP as soon as his pprostate recovers from biopsy. Has just had bone scan and pelvic TC. Expecting results. Hope he will be as lucky as you.
Best wishes,

Lola.

Lyn, I absolutely agree that node removal should be discussed with the surgeon. It was quite a long discussion in our case.
One thing we did discuss was whether removing the nodes was likely to reduce the potential for spread. In our case the surgeon didn't think so, he felt the only reason to remove the nodes was to gather information and be better able to stage the cancer.
I'm not sure that it is still true that some hospitals won't do node removal during robotic surgery. Certainly in Leeds this is no longer the case. I guess they have gained more experience over the last 5 years since your OHs op and have pushed the boundaries a bit further.

Hi Lola,
Also I was told before my OP to ask the surgeon how many of these OPs he has done and also what his success rate is, he should have done at least 400 or more OPs, recovery rate I think depends a lot on the surgeons experience, my surgeon had done over 500, make sure your OH does his PFEs before the OP there is a good APP called Prostate Aerobics you can download it free to a Android phone,
best wishes
Paul

Hi Lola,

Yes it is free to download on Android, I am glad I and everyone else is helping, I know what a help this site was when I was first diagnosed,

best wishes

Paul