The final countdown!

User

Posted 13 Jul 2015 at 18:34

The day following a failed RP they put my OH on paracetamol. He was in agony so had to go back on pain killer in drip for another 36 hours ( cannot remember what it was but it was strong). We were told that they try to get you off the pain killers ASAP due to costs!!!!!! Following the removal of the drip my OH went onto Tramadol at home then down to paracetamol etc. You should ask for Tramadol.

Good luck.

Alison

User

Posted 13 Jul 2015 at 18:54

Originally Posted by: Online Community Member

Can anyone help with some advice? Stuart in a lot of pain on his back kidney/rib area, gp did prescribe cocodomal today but after 3 hours pain was back he is a very quiet patient but I can see him wincing in pain and catching his breath. I told him to breath through nose and out of mouth and that did seem to help. Has anyone had pain like this after Da Vinci?

Xx

Hi Trish,

I had da Vinci surgery but was fortunate to only have minimal pain post op....

I'm just wondering if your hubby's pain and discomfort is being caused by trapped gas that was pumped in to expand the operating area?

Codeine and paracetamol were the only analgesics prescribed for me ...

He may well have to keep taking the co-codamol at regular intervals to maintain relief at the moment.

If in doubt I would call your GP just to be sure..

Best Wishes
Luther

User

Posted 13 Jul 2015 at 19:07

Thanks Chris, Alison and Luther he still is asleep at the moment. I was thinking it could be the gas, if bad overnight I will call doc in the morning.

Trish x

User

Posted 14 Jul 2015 at 01:47

Hey Trish

I have just been catching up with you and Stuart.

I had quite a bit of gas going around my body for the first few days which was very uncomfortable especially when around the wound area. Peppermint tea or cordial have helped me lots. I also found it hard to pass the gas from the back door as you don't have any push. It's getting better though but get Stuart to keep drinking lots n lots of water. I also felt holding my tummy inwards when trying to pass gas helps with the uncomfortableness.

I have horrendous uncomfortableness on the two sites to the left of my tummy when I get up from a laid down position, and sleeping on my back hurts my kidney area, it could be this with Stuart too.

It's just going to take a bit of time to settle down, he's been through a hell of a lot.

I hope he has a better night tonight

I also hope you are ok and managing to get rested when you can
X

User

Posted 14 Jul 2015 at 06:57

Hi Steve,

What you are describing is exactly what it is, I think it is around kidney area. He has had a good night last night and still asleep..

User

Posted 14 Jul 2015 at 08:27

Hi Trish,

My catheter is attached to my right leg and I sleep on the left side of the bed if I was laying on it on my back looking forwards.

Being very careful with the catheter and making sure it's not pulling and the tummy trauma area see in Stuart can sleep or at least position himself on his side when the kidney / back pain kicks in. I've been doing this and it helps no end, once in position it's comfortable, gives the back an instants rest. Even if it's for 30 mins at a time. It feels so much better.

It can be a little awkward getting into the position but slowly and carefully will do the trick.

Ste

User

Posted 14 Jul 2015 at 08:56

Glad Stuart has managed some sleep Trish.

Did you? Hope so anyway

We can't control the winds - but we can adjust our sails

User

Posted 14 Jul 2015 at 10:48

Thanks Steve will tell him that.

Johsan yes thanks I had an ok nights sleep x

User

Posted 15 Jul 2015 at 07:31

Sleep is a great healer sometimes. Wish him well for a better day today.

User

Posted 17 Jul 2015 at 18:14

Stuart had his catheter removed at Midday today, he obviously felt slightly uncomfortable as it was being taken out but no leakage as yet. He has been to the loo a few times and everything pretty normal, he is still wearing the first pad and that has stayed dry travelling 1 hour back from London. Hopefully this stays that way obvs doing his pelvic floor is important from here on.

Trish

User

Posted 17 Jul 2015 at 18:28

Spoke too soon he just stood up and had a little dribble!

User

Posted 17 Jul 2015 at 18:45

Ah well, what's a little dribble between friends.
As long as Stuart is comfortable and not in pain, the dribblyness (is that a word) will sort itself out.
It's very early days yet.

We can't control the winds - but we can adjust our sails

User

Posted 17 Jul 2015 at 22:20

Once a week has past, you'll get a good idea of where you are. I still have to use a pad a day, (It could last 3!!!!). It's so frustrating that after big improvements over the first 8 months, since Christmas, there seems to have been little change.

Paul

Stay Calm And Carry On.

User

Posted 18 Jul 2015 at 21:01

Hi Trish

glad Stuart is free of the catheter I am sure he is too!

The dribbles and spurts are normal and tend to happen when there is any small exertion.. standing up, bending down. lifting, coughing, sneezing, hiccuping, reaching up etc. so just about any body movememnt or bodily function. It should all improve quite quicky initially. The important things now are to maintain super cleanliness to avoid any infection, exercises to strengthen muscle control and not trying to hold on to go for a wee, Gravity does play a part too so with less body movement, lying down etc. nights are often easier than days.

I wish Stuart a speedy recovery post op and for you both to have some patience with each other as this can be a frustrating time.

Best wishes

User

Posted 18 Jul 2015 at 21:54

Hi Mo,

Thanks, today has still been quite good with just the odd dribble. Last night he got up twice to go to the loo, today still suffering a little with the gas around his chest but we were re-assured by the urology nurse yesterday that that is to be expected. We know that he must still take it easy for a while, it was nice yesterday as we went out for a nice lunch in London after the Hospital it made Stuart feel a bit more human!

Trish xxx

User

Posted 28 Jul 2015 at 18:16

It's now almost 3 weeks post op so I thought I would give an update. Stuart's continence is really good and only using 1 pad a day, the only times is the odd dribble when he laughs or maybe if he gets up after sitting for a long time, he is completely dry at night although is getting up twice to go to the loo. As he is self employed contractor he went back to work yesterday and is doing half days this week, he has found this fine so far so onwards and upwards. He will see the surgeon on 3rd of September for his check up and results of his first PSA so hoping that is all OK, I am just wondering if the biopsy on the removed Prostate showed a higher Gleason score would they tell us before that appointment or wait until September? On the ED side I can only imagine that will take a lot longer but they did manage to spare some nerves so hopefully that will help.

Thanks,

Trish x

User

Posted 28 Jul 2015 at 18:21

Glad Stuart has made good progress.

If some of the nerves have been spared there will be improvement there at some stage so fingers crossed for both of you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 28 Jul 2015 at 18:32

I hope you are both OK, sorry but I have to ask what is Da Vinci as I have not heard this before, and can you please tell me how you are getting on after treatment? Is this on the NHS? thank you for sharing

User

Posted 28 Jul 2015 at 18:34

That's really good progress Stuart has made. Excellent news

Arthur

User

Posted 28 Jul 2015 at 18:46

Hi Wishes and welcome,

This is a type of surgery done by robot, normally recovery time is quicker than open surgery as there is 6 small incisions on the abdomen and there is also the opportunity to spare nerves so erectile function is more likely to some back. I see your husband is on active surveillance at the moment but maybe this is something you could discuss with the urologist next time you see him? It can be done on NHS but it does depend on where you live, Stuart had it done privately as we have BUPA through my work. Everybody's recovery time seems to be different though overall and I do suppose it depends also on age and fitness, Stuart is only 46 so he felt this was the best option for him and he would have been too nervous to do active surveillance .

Good luck with everything and do download the toolkit and have questions and a pen and paper on your next urologist appointment.

Any other questions please feel free to ask.

Trish. X

User

Posted 28 Jul 2015 at 18:47

Thanks Arthur and Sandra

User

Posted 28 Jul 2015 at 18:52

Originally Posted by: Online Community Member

Hi Trish,

Really pleased to read that Stuart is doing so well..... in response to your question re biopsy / histology report etc... my Gleason score was uprated in that report as was my T staging! ( check out my profile for details )

The results were not revealed to me until I was face to face with my consultant approx 8 weeks after my op.... I would imagine Stuart's consultant will want to wait until he / she has the full picture ( ie. PSA results etc ) before a full appraisal of the procedure can be given?

Sometimes Gleason scores and T staging can be uprated or downrated because the Path Lab has the full specimen to examine, and will be able to get a more accurate analysis rather than just a few cores analysed from a biopsy.....

Best wishes to you and Stuart

Luther

User

Posted 28 Jul 2015 at 19:03

HURRAHHH you're back . Great news all round for Stuart . My review is 12th which is 8 weeks . My PSA test is tomorrow ( 6weeks ) and my doctor has promised to reveal all -Oooooooo . Excited ( not ) ! Im so glad you've come back to the fold as all the shared info is great .

" Wishes " -- My operation was laproscopic too through 5 keyholes , but mine was done by hand rather than via the Da Vinci robot , so you can have that option aswell .
Chris x

User

Posted 28 Jul 2015 at 19:08

Hi Luther,

Thanks for that, it was the only thing that was concerning him and I suppose you are right he would want Stuart in the consultation and with his latest bloods etc.

Trish

User

Posted 28 Jul 2015 at 19:09

I know you missed me Chris😉 Good luck for the 12th!

User

Posted 28 Jul 2015 at 19:19

Originally Posted by: Online Community Member

Hi Luther,

Thanks for that, it was the only thing that was concerning him and I suppose you are right he would want Stuart in the consultation and with his latest bloods etc.

Trish

Trish,

Problem is you only get half the story if you get the info in bits and pieces?

Although it was an uncomfortable 8 weeks wait for me, my preference was to wait until all the 'scores on the doors' were back.

I'm pleased I did, as I had a full explanation of the results from the 'main man' and he was able to answer any questions that I had based on all the info available to him....
Luther

User

Posted 28 Jul 2015 at 19:46

Maybe I should ask doctor not to give me my PSA result and just wait till the 12th for it all ? I get your point but he's as keen as me to find out. It could be a Gud PSA but salvage needed etc. I may call tomorrow !

User

Posted 28 Jul 2015 at 20:03

Originally Posted by: Online Community Member

Chris, everyone is different!

My way is not necessarily your way..... If you will be happier to receive interim results then that's fine!

I know how my mind works, and for me to receive pieces of info prior to seeing my surgeon would have made me more nervous than ever!
Best wishes
Luther

User

Posted 28 Jul 2015 at 21:19

Originally Posted by: Online Community Member

Hi Luther,

Thanks for that, it was the only thing that was concerning him and I suppose you are right he would want Stuart in the consultation and with his latest bloods etc.

Trish

Trish,

Problem is you only get half the story if you get the info in bits and pieces?

Although it was an uncomfortable 8 weeks wait for me, my preference was to wait until all the 'scores on the doors' were back.

I'm pleased I did, as I had a full explanation of the results from the 'main man' and he was able to answer any questions that I had based on all the info available to him....

Luther

You're right best wait for all the scores on the door's.

User

Posted 28 Jul 2015 at 21:21

Didn't read properly Chris but I am sure PSA will be a big fat Zero!

User

Posted 28 Jul 2015 at 21:31

T & S

Well done on your recovery, I thought I had done well back to work in 4 weeks so 3 weeks is brilliant although some will say way to soon.

I got my histology over the phone from my surgeon after three weeks, even though it was not quite the news I wanted it was what it was and I think until you get a post op PSA result a few weeks later a decision on possible further treatment may not be possible.

Thanks Chris

User

Posted 07 Sep 2015 at 13:42

Hi All,

Just an update from me, recovery has been good overall and continence is good wearing 1 pad a day just for protection really during work as may be a slight dribble after a laugh/sneeze. So far absolutely nothing happening "down below" but that is expected I suppose!

Big day tomorrow as Stuart will get his histology report from his surgeon, he did his Supersensitive PSA Test in preparation last week so starting to feel a bit anxious about the results of that. Will report back tomorrow with the docs findings.

Best Wishes,

Trish

User

Posted 07 Sep 2015 at 13:47

Fingers crossed for you Stuart.

User

Posted 07 Sep 2015 at 13:58

Good luck Stuart and Trish.

Everything's crossed, fingers, arms, legs,eyes !!

Hope the news is good for you

We can't control the winds - but we can adjust our sails

User

Posted 07 Sep 2015 at 14:19

I can't wait for some great news Trish. Everything crossed from El and I . Stu"s recovery sounds exactly the same as mine physically and I'm moving on ED wise. Xx

Chris

User

Posted 07 Sep 2015 at 19:07

Good luck for histology tomorrow

I will be thinking of you

User

Posted 07 Sep 2015 at 21:45

All best wishes to Stuart, and you, for tomorrow.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 08 Sep 2015 at 15:45

Hey Trish

Chris told me today was Stuarts big day, I have everything crossed for you both, I really hope for a fantastic result.

I have mine tomorrow and I am totally terrified..

Thinking of you both

User

Posted 08 Sep 2015 at 18:05

Good luck Steve thinking of you tomorrow!

Stuart had good news PSA was 0.04 doc feels all going well with continence but still have a way to go with ED and we have some work to do with that. Next PSA in 3 months and in the meantime it's pump use every day.

Trish x

User

Posted 08 Sep 2015 at 18:20

F-A-B-U-L-O-U-S
Im soooo pleased for you both . What an enormous weight off both your minds. Been there , have the T-shirt.
So nice you can now just drop it for a while and concentrate on other things.
Did I just hear a cork pop ????? Im on my way
Really happy now xx
Chris and El xx

User

Posted 08 Sep 2015 at 18:27

That's excellent news Trish, as Chris said I hope you'll both be downing a few beverages tonight to celebrate.

On the ED front I'm exactly the same not much happening down there.

I'm going to get tomorrow out the way and if it's good news I'm going to start the cialis daily again and just put up with the side effects. I got a new pump today just been having a mess and texting Chris at the same time lol, bloody uncomfortable being an uncut guy. But will keep at it... Lol

User

Posted 08 Sep 2015 at 18:55

Well done Stuart and Trish. Great News

Good luck for your turn tomorrow Raiden

We can't control the winds - but we can adjust our sails

User

Posted 08 Sep 2015 at 19:02

Great news for you both. Onwards and upwards from here!

User

Posted 08 Sep 2015 at 19:38

Fab news Trish, we'll have that gin to celebrate soon :-)

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 08 Sep 2015 at 21:20

Thanks everyone we wouldn't have got through without you lot xxx

User

Posted 08 Sep 2015 at 22:54

Great news Trish, onwards and forwards x

User

Posted 09 Sep 2015 at 11:22

Trish

Brilliant news hooray!!

As for the exercises get in there and enjoy them, make them part of your journey together.

There are a few of you guys now going through the ED with pumps and meds. I hope you can all give each other advice, support and tips on what works best for you. I am sure others who have been through this will contribute too.

All the very best

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