My husbands recent diagnosis of advanced prostate cancer

User

Posted 25 Nov 2021 at 10:06

Hi John,

I did eventually get the referral after a lot of hard work (which it turned out wasn’t needed…just need to speak to the right person 🙄)

We were told that an NHS referral wouldn’t make too much difference to the date, however now it seems that isn’t the case so he’s having the op done private again now!

Pleased with the PSA. Although it wasn’t the plan to have a test yet it has definitely given me reassurance that atleast the HT is working.

Best wishes

Elaine

User

Posted 20 Dec 2021 at 22:48

Well the day has finally come and my OH will be having his RALP tomorrow. Would just like to say a huge thanks to everyone on this forum for the help in getting to this point. I feel like we’re pretty organised as I’ve gone through the check lists on other posts that have been really useful. I’m sure I would have felt a bit lost at this point without all of the help. No doubt I’ll be back on this week asking for everyone’s help again 🤦🏻‍♀️ Xx

User

Posted 21 Dec 2021 at 00:40

Great, it'll be a relief to get that behind you.

Dave

User

Posted 21 Dec 2021 at 01:18

good luck to you both your OH is in good hands has you have noticed everyone is here for one another some fantastic advice by several people on here good luck and have a happy Christmas gaz

User

Posted 21 Dec 2021 at 07:30

Wishing you and the OH all the best !

User

Posted 23 Dec 2021 at 15:22

I know I posted about this on someone else post but wanted to update my thread.

Rob had his RALP 21/12/21 been told all went well, had to have bladder neck reconstruction. He stayed in for 2 nights and I’ve just picked him up and brought him back to our rented apartment near the hospital for the next 2 weeks.

Since coming back he is feeling like he wants to wee even though he has the catheter in….can anyone tell me if this is normal and if they have felt like this? Thank you

User

Posted 23 Dec 2021 at 15:31

Hello Elaine

Re your question, having also had RALP surgery on 21/12 I can confirm that you have the feeling that you want to wee even though you have the catheter in. It is a strange sensation but you soon get use to it. Well, I have anyway

User

Posted 23 Dec 2021 at 15:44

Thank you so much for that information, I will let him know. His bag is still quite red aswell not sure if that is to be expected at the moment.

Hope you’re feeling well after your surgery and wish you a very speedy and full recovery x

User

Posted 23 Dec 2021 at 15:56

I think the more water you drink the clearer the wee in the bag is. My bag was quite clear yesterday because I was drinking copious amounts of water but because today I have been taking less water my bag is more reddish in colour. The nurse told me to drink as much water as I could as that helped flush "things" through the system.

Yes, I am feeling as well as can be expected and have updated my thread to record the present state of play. My felicitations to your husband and at least he and I are on the other side of the operation and should soon start feeling better.

User

Posted 23 Dec 2021 at 16:14

Thanks so much. He says he’s been drinking a lot but of course he’s not had me there to monitor him 😂😂 hopefully it will be clear by tomorrow.

He’s still waiting for his first bowel movement, so think he will feel better after that.

Glad things are ok. I will look properly at your thread later when I get chance. Thanks again for the advice, it’s really helpful and much appreciated x

User

Posted 23 Dec 2021 at 16:19

Elaine

I have a permanent catheter and frequently get the feeling I want to urinate. The position of the catheter will affect the feeling of wanting to urinate. If the catheter is high up in the bladder urine will build up below the oulet in the catheter. A small build up of debris in the catheter can also halt the flow for a while. Pressure in the bladder will usually push the debris out. As long as the bag is filling there should be nothing to worry about. I find lying down will sometimes help restart the flow.

I was told Rosé colour urine was okay Red wine colour needs attention. As already said a bit of bypassing frequently happens, if you get bright red clots coming passed the catheter get help.

I am sure it has probably been mentioned but a small squirt of instilagel or hydrocaine down the eye of the penis at the side of the catheter will usually ease any discomfort. It costs £2-3 and can be issued by a pharmacist without prescription, someone did say Boots won't issue it without a prescription.

As always if in doubt get medical attention.

Tell him to take it easy but keep mobile.

Thanks Chris

User

Posted 23 Dec 2021 at 19:21

I think it is so important to have somebody with you when recovering post-surgery, not only to ensure you are drinking enough water and taking all your medication but to help, for example, picking things up off the floor you have dropped. Although I am not in any real pain bending down low is uncomfortable and only achieved by standing on one leg and using the other leg as a counterweight as I bend down. I could almost be a ballet dancer!

I haven't had a bowel movement since Sunday and I am sure I will feel better once I have passed a motion or 5. Passing wind makes you feel better, though perhaps it is not so good for the other person in the house.

I am a little off my food at the moment and I guess your OH is the same.

User

Posted 24 Dec 2021 at 07:27

Thanks for the reply Chris. His bag is definitely filling up so I guess that’s a good sign. He drank quite alot yesterday so he was constantly emptying it, still very rose though….hoping it will become a bit clearer today. Surgeon phoned again yesterday though and said that was fine too.

I did get some of the instilagel to bring with us. I got it from boots without prescription but they were very reluctant to give it to me. He said it feels fine at the moment so doesn’t need any…not sure if best to use it preemptively?

Hope you have a lovely Christmas x

User

Posted 24 Dec 2021 at 07:38

Yes I think you’re right OhDear, it must be much more of a challenge to do this on your own. I know my OH is very grateful for all my help….although I do get a few eye rolls when I’m constantly mithering him 😂 even worse he can’t escape me as we’re staying in a small flat 😂

Rob definitely feels the same, think he will be better when he finally ‘goes’! I just made him a smoothie yesterday and a huge blended soup, I’ve got him reluctantly taking a bit of prune juice and he’s been having the movicon so hopefully sometime soon. He hasn’t been passing much wind which I find a bit strange as I was expecting him to be farting all the time 😂 told him he best not be holding it 🤦🏻‍♀️

Had a bit of a stressful day yesterday so still not had time to properly read your thread, I will do today. Take care and I wish you well with your recovery. Hope you manage to enjoy a nice Christmas x

User

Posted 24 Dec 2021 at 10:11

Morning Elaine

Responding to a point you asked of Chris, my understanding is that the Instilagel should only be used as and when needed. It immediately numbs the area where it is placed and according to the instructions that come with it it should not be overdosed. I have only used it a couple of times and have used much less than the recommended dose.

If your OH does manage to evacuate his bowels today ( I did and it was wonderful) tell him not to be concerned if the stools are a little bloody. I was told by one of the nurses at my hospital that that would happen and not to be concerned.

Have a great day

Ivan

User

Posted 24 Dec 2021 at 14:56

Thanks Ivan. He said it’s not uncomfortable at the moment so hopefully it will stay that was and he won’t need the instilagel 👍🏽

Evacuation complete 😂 I said how times have changed that I now get excited if he burps, farts or poos 🤦🏻‍♀️🤣

So far so good with recovery and hopefully it will stay that way. And the same for you too x

User

Posted 25 Dec 2021 at 16:27

Not sure if anyone will be on the forum today, just after more catheter advice please. Rob's night bag was nearly full this morning, since then though he’s not had to empty it and it’s not even half full. He drank about 3 litres of water yesterday and over 1 litre so far today. What little urine there is is still very pink and has been from day 1. I’ve got him to lie down to see if that might restart the flow. Is there anything else he could try? Should I be worried? Or just being paranoid? Thank you

User

Posted 25 Dec 2021 at 16:58

The rate at which urine drains into the bag is not always constant. The amount of urine in my overnight bags varies from 300 to 1500mls. Are there any clots or debris coming into the bag ? Are the pipes kink free and is the bag below the level of the bladder.

Watch out for constant bypassing which may indicate a blockage in the catheter. If he starts to feel ill get medical attention. Retention can be quite painful and is not ideal after RP surgery.

If you think the catheter is blocked a District nurse should be able to flush the catheter but the advice should have been given DO NOT let anyone other than a urologist change your catheter.

Lying down usually helps with my catheter drainage. If the leg bag is on the left leg lay on the left side and visa versa.

Constipation can also cause a slow flow of urine through a catheter.

Thanks Chris

User

Posted 25 Dec 2021 at 17:09

Thanks for your reply Chris.

It looks like there is some debris blocking it as some just came through and then the bag filled up. I can see another little clot again which may have started to block it up again 🤦🏻‍♀️

I’ve actually just phoned the hospital and a doctor called me back, we’re going to give it an hour to see how things are going and if nothing coming through again they’ve said to come in and they will flush it or do whatever required.

Thanks so much for responding, especially on Christmas Day 🤦🏻‍♀️

User

Posted 25 Dec 2021 at 17:09

Afternoon Elaine

I was worried on Thursday that my night bag was not filling up, my day and night bags having always been quite full, so drunk more water, played around with the strap of my day bag to ensure it was not stopping the flow, checked my tubing to make sure it was not blocked and sat up higher in the bed so that my bags were much lower than my bladder. Within an hour or so my night bag was again filling up at the rate it always had. My urine is not the nice clear colour it was pre-surgery and there are always some bloody stains on the tena pad which I have under the tube from my penis.But, it is early days and prostate removal is major surgery so it will take a little time for things to return to "normal".

I assume Rob flushes his night bag through with warm water each day after he has detached it from his day bag?

As Chris has mentioned, laying on ones side can help flow.

Ivan

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