I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

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, 

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 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

Show Most Thanked Posts
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.
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!

AC

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 wink

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! 😉

User
Posted 19 Dec 2018 at 17:14

Bladder spasms can be very short and very uncomfortable, does he leak a  small amount of urine at the same time ? I had an excruciating pain two days after my op and again about 5 days after my op the latter resulted in an ambulance ride and morphine injections, after three or  four hours in A&E they found nothing , in the end it turned out to be constipation, lots of pain killers can cause constipation. I had little or no pain from the gas they use to inflate the operation area. Keeping mobile will help with trapped wind and bowel movements. Good that you are getting in touch with the hospital.  

Thanks Chris

 

 

User
Posted 19 Dec 2018 at 17:46

I was prescribed oxybutynin and an alpha blocker for bladder spasms.  

Did not get any pain on bowel movement only when bladder started to fill.

Bladder spasms are excruciating and had me doubled over in pain. You feel like you need to urinate but can't. 

Urinating regularly helped. 

Neil

User
Posted 19 Dec 2018 at 21:27
When I had sepsis caused by peritonitis it started about 5 days post op, initially I just felt off colour and maybe a bit feverish when I woke up, by 11 the intense pains had started, that's when my GP told me to take paracetamol over the phone. By 2pm I was being rushed to intensive care by ambulance no thanks to the GP!

Sounds like your GP is better than mine!

User
Posted 29 Dec 2018 at 20:15

Bounce for Reenmatch

User
Posted 12 Jan 2019 at 09:51

Hi everyone,

well it’s almost 5 weeks post op and Mr L is doing pretty well. to look at him you’d never know he’d had a big op. The continence is usually pretty good, with him only needing the level 1 tena pads, which normally last 24 hours and then they have nothing but a slight dribble on them, however just this week he’s had 2 accidents overnight whilst he’s been sleeping. Would you say this is normal? it just seems a bit random, when he’s virtually dry.

The other thing that seems a bit odd, he’s had a semi erection whilst having a poo!! this has happened a couple of times, is this normal? is it a good sign that the nerves are starting to heal? There is no libido at the moment either. I know its still very early days, and patience is a virtue.

 

Thanks for any advice guys, I hope you are all ok? I’ll be glad when spring arrives!

M

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

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 14:57

Thanks for answering,  I didnt  know if it was due to the amount of fluids he’d drunk? the first time it happened hed had a late cuppa followed not long after by a glass of milk. The 2nd time which was last night he’d been drinking wine and whiskey 😱 although he’s drunk alcohol before and not leaked. 

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 16:18

Thanks lyn, that makes sense. 

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 13 Jan 2019 at 09:48

Thank you all for taking the time to reply,  I can tell you its certainly made us both feel better.

It seems funny how hes 100% continent during waking hours, only to have this blip whilst sleeping.

Yes thats a good idea to try and find out what is the trigger. I definately think tiredness plays its part. I could tell how disapointed he was, after doing so well. like you say a tiny blip can seem enormous.

Regarding the pooing causing swelling, he was over the moon to see a bit of life down there again. He’s convinced its a good sign. I dont know, i hope so.

Cant thank you all enough.

x

User
Posted 13 Jan 2019 at 15:22
I have some tumescence during defecation (I hate the babyish current trend calling it ‘pooing’), but sadly nothing otherwise, despite 5mg Tadalafil daily, and the 20mg master-blaster on occasion, without success so far. Seven months post-op.

Am I bovvered? No. Still breathing.

Cheers, John.

User
Posted 13 Jan 2019 at 18:02

“ (I hate the babyish current trend calling it ‘pooing’)”

We could use excreting (that includes urination, defecation,etc.)

Or we could use a ”Barry White”, a ”tom tit”, a ”Donald Trump”, a ”pony and trap”

Just saying...the poo isn’t the point being made in this thread. Its about recovery from surgery.

No offence intended btw, I'm off my meds.

Edited by member 13 Jan 2019 at 20:35  | Reason: clarification

User
Posted 05 Feb 2019 at 11:04

Hi everyone,

 

We are now 8 weeks post op and have just been to see the surgeon for our follow up appointment and the ED nurse, so thought this would be a good time to update my thread.

 

GLEASON 4+3=7 (was 3+3=6 on biopsy)

GLEASON GROUP = 3

VASCULAR INVASION = NO

INVASION OF SEMINAL VESICLES = NO

PERINEURAL INVASION = YES

EPE PERINEURAL INVASION = NO

MICROSCOPIC INVASION OF BLADDER NECK = NO

MARGINS = NEGATIVE

pT2CN0M0 (down graded from T3a)

PSA <0.05 ( I think that's right, they said it was undetectable)

 

The surgeon was very pleased, and said he was glad the we had the op as obviously there was a more aggressive cancer in there up from G6 to G7.  I was worried about this but he seemed to think it was ok and probably better to have a G7 with a T2, rather than a G6 with a T3, I'm not sure but happy that he's happy.  I did forget to ask about the perineural invasion, but have been told it's only significant if picked up on biopsy, but not if it's only noted in the post op pathology.  We are not due to see the surgeon for another 4 months, when Pete will have his next PSA test.

We also saw the ED nurse, she asked how things were going continence wise and was pleased to hear Pete has been pad free since week 5 or 6, then onto the ED issues, we told her that he has had one spontaneous semi erection, and like I said above a couple of times when he had had a Donald Trump!! (for you John).  She claimed he is doing very well and has prescribed him Cialis 10mg, 2 tablets per week, however she seemed reluctant to give him a pump.  I wonder if this is something I should have insisted upon?

So that's pretty much the update.  I can't tell you how pleased we are to have this outcome, I know it's early days but long may this continue.  Thanks again to everyone that has answered my many question, and has really kept me sane throughout the past 3 months.

I'd appreciate any thoughts on the above.

Michaela x

 

 

 

 

 

User
Posted 05 Feb 2019 at 11:27
I think you have demonstrated the real benefit of RP, looks like you got it just in time..
User
Posted 05 Feb 2019 at 11:29

Very good results. Although upgraded from initial biopsy, it appears that it has been caught early.

I had PNI on biopsy, but was told that with all margins clear it shouldn't be a cause for concern...fingers crossed.

All the best with future recovery.

 

User
Posted 05 Feb 2019 at 12:11
Hi Michaela,

Pleased it all went well. Thanks, I prefer Donald Trump to poo, but some would say they are the same.

I think you should try Tadalafil 5mg daily and ask for a pump. They cost the NHS around £160.

Just had my 9 month PSA, still undetectable so good news, but no sign of life on the ED front. Not too bothered about that, and Her Loveliness is quite relieved! 😂😂

Cheers, John.

User
Posted 05 Feb 2019 at 13:19

A very positive report Michaela.

It sounds like the operation went really well and has removed the cancer especially with it now being T2c. 

I think you should ask for a pump to aid with recovery from ED.

Hope PSA results.

All the best going forward, time to get on and enjoy life.

Ian

User
Posted 05 Feb 2019 at 13:55
Pump is the most essential piece of kit in my opinion if you want EF back one day. It’s been my saviour. Plead with your doc , or buy a professional one yourself ( imedicare.com) , or even get an Ann Summers one seriously. It takes 10 minutes a day max. I fit mine in STILL despite return of function every time I shave. Some may disagree but I’m still seeing improvements at the 3 1/2 yr mark for sure. I’d up the Cialis too to 5mg daily if poss.

If life gives you lemons , then make lemonade

User
Posted 05 Feb 2019 at 16:12

Originally Posted by: Online Community Member
Pump is the most essential piece of kit in my opinion if you want EF back one day. It’s been my saviour. Plead with your doc , or buy a professional one yourself ( imedicare.com) , or even get an Ann Summers one seriously. It takes 10 minutes a day max. I fit mine in STILL despite return of function every time I shave. Some may disagree but I’m still seeing improvements at the 3 1/2 yr mark for sure. I’d up the Cialis too to 5mg daily if poss.

Thanks for the good wishes and advice guys.  I just checked out the cost of a pump at imedicare and they are a bit pricey.  Can anyone recommend any that's good but a bit cheaper please?  We aren't due to see the ED nurse again until probably May, long time when you want an erection!  Also you suggest uping the Cialis, is this something we could ask our Gp to do?  Not sure we'd get very far with the ED nurse.

 

User
Posted 05 Feb 2019 at 16:43
5mg daily Cialis and a pump should be available free on prescription from your GP.

Cheers, John.

User
Posted 05 Feb 2019 at 16:49

Oh that's great!  Thanks John. 

User
Posted 05 Feb 2019 at 17:29

Just a heads up..

Not all areas will prescribe 5mg cialis.. or prescribe a pump .. 

I had to buy my own pump ( ErecAid Esteem ) and only had 5 mg cialis prescribed for 1 month ... even though I’ve paid the same NI stamp as everyone else.. 

Hopefully your area will be more generous than mine is 

Best Wishes 

Luther

 

User
Posted 05 Feb 2019 at 17:34

Originally Posted by: Online Community Member

Just a heads up..

Not all areas will prescribe 5mg cialis.. or prescribe a pump .. 

I had to buy my own pump ( ErecAid Esteem ) and only had 5 mg cialis prescribed for 1 month ... even though I’ve paid the same NI stamp as everyone else.. 

Hopefully your area will be more generous than mine is 

Best Wishes 

Luther

 



I might add that I'm not moaning too much....as I get prescribed 8 caverject dual chamber per month, although I believe I'm only entitled to 4 under NICE guidelines?  
I'm pretty sure that's not a generous gesture on my GP's part..... He prescribes 4 ..but there are 2 in a box lol! laughing

 

Edited by member 05 Feb 2019 at 17:43  | Reason: Not specified

User
Posted 05 Feb 2019 at 17:40
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 :-)

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

User
Posted 05 Feb 2019 at 19:36

Hi Michaela, I posted this recently somewhere else. Maybe useful here

I have copied links below from amazon of what I use. I added the insert because it is softer and more comfortable. You may need to trim it. The pump comes with a squeezy ball type pump which soon becames ineficient so I got the scissor grip one. The pump also comes with a ring which is rubbish, so you will need to get others if you want.

 

I dont know how to make the links work properly so you will need to copy them to your browser.

 

 

https://www.amazon.co.uk/Pipedream-Pump-Worx-Potent-Black/dp/B005EILA1G/ref=gp_aw_ybh_a_1?_encoding=UTF8&psc=1&refRID=4X5D34XDQ8142FY27WMT

 

https://www.amazon.co.uk/You2Toys-Transparent-Replacement-Cuff-Pumps/dp/B004D755GU/ref=pd_aw_fbt_img_2/257-6491659-0966014?_encoding=UTF8&pd_rd_i=B004D755GU&pd_rd_r=0c552ce1-25f3-11e9-bc3f-c119fe0d879a&pd_rd_w=cBAC7&pd_rd_wg=HqZDk&pf_rd_p=829773a1-0532-4117-a22f-5a653a869422&pf_rd_r=EYNNR36078DTPBS0Q8WA&psc=1&refRID=EYNNR36078DTPBS0Q8WA

 

https://www.amazon.co.uk/gp/aw/d/B001LYZ5RC/ref=ppx_yo_mob_b_post_ship_o0_img?ie=UTF8&psc=1

 

Good luck

 

Cheers

Bill

 
Forum Jump  
12>
©2019 Prostate Cancer UK