GregJ’s Journey - To Infinity And Beyond! - - Page 3Advanced or metastatic cancer

User

Posted 11 Jul 2023 at 16:49

So, catheter out earlier today, which wasn’t as bad as I was expecting I have to admit. Not the most pleasurable thing I’ve ever done but not too bad 😊

Little bit of leakage in the time since, but I did manage the two hour journey home without any major incidents. I was definitely ready to go by the time I got home as there was certainly a build up of bladder pain, I was managing to hold it, but it was all I could concentrate on I have to say.

I guess we have to hold it as part of the bladder retraining?
How long are we supposed to hold it for?

I’ve had very little advice on that to be honest so I’m not sure what I should do for the best. The leakage I’ve had are at the strangest times, not when I’m coughing or bending or standing, like I imagined it would be, more maybe after 4 or 5 steps once I’ve set off walking. That has surprised me I must say, I thought there would be triggers but it seems a bit random so far. Anyone experienced the same?

Also, a small amount of blood sometimes when I go but the nurse said this is completely normal and could last a couple of weeks yet. Anybody any advice or reassurance to offer? 😊

Some good news on bloods (which they took again today) my hemoglobin has risen to 118 so definitely on the right path. It dropped as low as 70 when I had the initial internal bleed but has risen between 5-10 each day, which is reassuring. Normal levels for an “old man” is 140 and above so I’m nearly there. Plenty of liver and black pudding to come, to help the levels. Nom nom nom nom 😁

Hopefully I can feel that my recovery can start properly from today as I’ve felt in limbo for the past 12 days, since the surgery.

Take care

Greg.

Edited by member 11 Jul 2023 at 16:51 | Reason: Typo

User

Posted 11 Jul 2023 at 20:21

Greg, pleased it went well. I was the opposite to you, I could walk without leaking, then when I stopped I would leak. I was lucky to recover my continence very quickly. I would just hang on a little longer when I got the urge to go. You no longer have your upper sphincter, so I am not sure where the pressure builds up if hold on too long. You certainly don't want to put any extra pressure on the new joint.

You can expect a small amount of blood,a few clots, some bits of scab and debris over the next few weeks. Guys often report passing blood, when we ask questions quite frequently they have been doing too much.

Hope all goes well from now on.

Thanks Chris

User

Posted 11 Jul 2023 at 20:24

Hi GregJ,

Congratulations - you've done really well to get the catheter out without too much grief. If you were then able to travel for 2 hours without leaking, you're doing VERY well!

I had bad incontinence after the catheter was removed, but it's slowly getting better. Have you been told to do Kegel exercises to strengthen the muscles? There are phone apps you can get to show you how to perform them and to remind you when they're due (typically, three times daily). Leaking when doing any activity can be a problem, but especially in the early days.

Best wishes,

JedSee.

User

Posted 11 Jul 2023 at 20:52

Hi JedSee

yes I was told to start the Kegels now the catheter has gone. I started them about 4 months ago, 3 times per day, then stopped whilst I had the catheter of course.

I set an alarm on my phone to go off 3 times per day, morning, afternoon and evening. I do sets of 10 holding for 10 seconds and 50-100 “quick” squeezes of a second each. I read that on a USA prostate website. They felt strong before my surgery but doing my first set today they felt really weak again, like I was starting from scratch. I wonder if the internal bleed into my pelvis will have affected them in some way, either that or not doing them for 2 weeks means I’m back at square one.

Time will tell … I’m so impatient, I just want to be 3 months down the line and see where I am then. 😊

I’m holding on to it as long as I can, sitting on the couch, it’s ok I guess. It’s so difficult to gauge isn’t it, having never had anything like this before.
I know after the surgery complications it could be a hell of a lot worse so I am thankful for little mercies and trying to keep a sense of humour.

I’m a bit worried about going to bed to be honest, apprehensive about what might happen…gulp.

I ordered some night “man nappies” a while back, opened them tonight and they’re …. absolutely huge! That’ll be a giggle putting one of them on! 😂

cheers

Greg.

User

Posted 11 Jul 2023 at 20:58

Thanks Chris

I’m not holding it until it causes any pain, I’m just trying to delay before going. I’m maybe trying to do too much too soon am I?

The small leaks come at the oddest of times when I least expect them. Very odd.
I’ve read here many times that were all different, so it seems.

There’s been blood twice tonight, only a tiny amount so I guess I just keep an eye on it over the coming days and weeks. Thanks for the reassurance

I just hope that I can now start proper recovery instead of going back into hospital every evening with yet another problem. My GP rang today as he’s been on holiday for a fortnight and was catching up with what had been happening… I’m sure my recent medical notes gave him some interesting reading! 😳

Take care

Greg.

Edited by member 11 Jul 2023 at 21:04 | Reason: Not specified

User

Posted 11 Jul 2023 at 21:31

I’m so pleased it all went well today Greg, now you can start to concentrate on your recovery!
I have no personal experience of recovery but speak a lot the guys in my Maggies Group about their recoveries and what I get from them is you need to be patient and take things slowly, probably even more so because you’ve had a hard time of it. I had lunch with one of them today who is 3 months down the line and he’s doing very well so hopefully you will be the same.

Onwards and Upwards(although that might have to wait a while🤣🤣🤣)

Derek

User

Posted 11 Jul 2023 at 21:38

Those night time pants are quite fetching aren't they :) I bought some cheaper ones and my wife pointed out that they had frills - they were unisex but certainly make a statement - Benny Hill comes to mind :)

If you are like me you will find sleeping to be OK - I wake up 2 or 3 times a night knowing I need to go so have a urinal bottle by the side of the bed. I swing my legs out to sit on the side of the bed, grab the bottle and put my penis into it and then stand up - flow starts immediately.

Over the last couple of nights (8 weeks post RARP) I am down to 2 times and last night was just 1 - so improving all the time :)

User

Posted 11 Jul 2023 at 21:41

Haha cheers Derek

Now I’ve restarted the Tedalafil hopefully I might get some upward momentum in the future 😂

Thanks for the chuckles, I’m really trying to concentrate on keeping a sense of humour, if we didn’t we’d be screwed wouldn’t we.

I feel 55 going on 95 tonight but I’m looking forward to brighter times in the future 😊👍

Cheers

Greg.

User

Posted 11 Jul 2023 at 21:44

That’s great to hear Steve

Yeah, I’m sure these night pants are made for elephants .. not ‘uman beans! 🤣

It’s certainly a mini adventure so let’s see what tonight brings. Just hope I get some sleep as I’m still so exhausted after the past 12 days

Cheers

Greg.

User

Posted 12 Jul 2023 at 08:45

Well, the first night didn’t go too badly actually. I’m amazed.

I was strapped, padded and covered like an oven ready turkey (?🤔) going to bed. I was in bed by 10.30pm , I stopped drinking at 8.30pm as I’d already had 3 litres through the day.

I woke up at 4.50am to go to the toilet but other than that I slept pretty much right through and my padding was bone dry this morning. I imagine there might have been some tiny leaks but there’s still blood in my urine and there is no sign of anything at all in the night pants.

The trip to the loo at 4.50am was quite heavily tinged with blood, which I was a little concerned about, but nothing anywhere near as much since that.
I guess that is normal, even 13 days after the op?

I’ll keep an eye on it and I’ll mention it to my CNS if it continues or gets worse.

All in all I think I’m quite happy with that for the first night …. Although, I’m often accused of being a pessimist… so there’s plenty of time yet!! 🙄🫣🤣

(I hope it’s ok to document my progress on this thread? I just want to use it as a reference to look back on as time goes by.)

Take care

Greg.

User

Posted 12 Jul 2023 at 10:25

It sounds like your continence is doing very well. Blood and debris is still common at this stage.

Documenting on a thread like this is a very good idea. Future readers will be able to read exactly what recovery is like, blow by blow, not just the edited highlights.

Dave

User

Posted 12 Jul 2023 at 10:56

Thanks Dave

Now I’ve started drinking water through the day again I am starting to get the odd leak again when moving around the house.
Sometimes when I start to pee it seems to take a very long time to stop and the flow is often quite weak.

Hopefully things will improve as time goes on

take care

Greg

User

Posted 12 Jul 2023 at 11:11

I did have a question - you said that you had restarted Tedalafil but as you are still in the healing/recovery stage, are you sure that it isn't too early? I would have thought that would have waited a couple of months at least before using it but as my RARP was not nerve-sparing then it wouldn't work for me so I have no experience of it.

Just the thought of having an erection while everything is healing seems to be questionable - but i may be (probably) wrong :)

User

Posted 12 Jul 2023 at 11:34

Hi Steve

I was unsure of this so I asked many times during my hospital stays and A&E visits.

It was a nurse specialist at the operating hospital that removed my catheter yesterday that told me to start them again.
It an urology surgeon at my local hospital that stopped them after I was readmitted for the internal bleeding.

I think I’ll call my main contact nurse at my local hospital and ask her to check again with one of the urologists.

cheers

Greg.

User

Posted 12 Jul 2023 at 12:06

If you are lucky enough yo be prescribed tadalafil it is usually recommended to start taking it as soon as the catheter out. The tablets draw oxygenated blood to the area which helps speed up healing. You are very unlikely to have an erection but so what if you do - no harm will come to you. My husband had his first orgasm the day his catheter came out.

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

User

Posted 12 Jul 2023 at 13:02

This is an excellent post Greg so please keep it going. It’s so important that others can see both the good AND the bad…and things DONT always go smoothly. Sometimes it’s more difficult to post when things are not going your way but I have found that it helps both me and others to be able to talk about it openly.
Even though it’s not really relevant to me I’ve been following your post with great interest.

it’s sounds like you have maybe turned a corner so let’s hope it keeps going🤞🤞🤞

all the best,

Derek

User

Posted 12 Jul 2023 at 14:10

Thanks Lyn

I understand how the Tadalafil works and I think that’s why the urology surgeon stopped them after I had my internal bleed. The bleed started in the main wound above my navel and goes down into my pelvis. They didn’t want even more increased blood flow to that area until there had been plenty of time for the bleed to stop.

My hemoglobin has increased again to 118, as of yesterday, so they assume that the bleeding has definitely stopped and things are on the mend. 🤞

Take care

Greg

User

Posted 12 Jul 2023 at 14:15

Cheers Derek 👍😊

I’m documenting each stage as I go through it so I can look back in the weeks and months to come and see how far I’ve progressed.

As I said earlier I wasn’t sure whether to post the “bad bits” but like you I think it’s good to see a balanced picture with real world results.

I do wish I was one of the few percent that sail through with zero problems and get back to their full normal life in a matter of weeks but …. This is the hand I’ve been dealt so I have to just get on with it. 😊👍

Cheers

Greg.

User

Posted 13 Jul 2023 at 09:34

Another totally dry night, which I really appreciate.

It seems if I’m sitting still, watching TV or laying on my back to sleep, there is zero leakage. I can cough, sneeze and stand and walk a few steps no problem but then say I’m making a cup of tea, half way through the kettle boiling there will be a little leak. Seems so random really.

I’m using two pairs of disposable pants per day, I could probably get away with just using one but I like to feel fresh so I wash often and change the pants half way through the day. I got the pants from Age UK, only £4.50 for a pack of 8 (9 for the medium size) so a great price. They are amazingly absorbent and feel dry instantly after a small leak.

I’m two days post catheter removal now so although my ridiculously impatient mind is telling me I want to be perfectly dry now, I keep telling myself I should be happy with where I am right now.

Called my main contact nurse to check I should definitely be on the Tadalafil tablets now and waiting for her to call me back after checking with urologist.

My abdominal muscles still hurt and ache but I guess this is just normal healing from the surgery. As Stephen Fry said after his RP … you’ve been stabbed 5 times, all be it under anaesthetic, you’ve still been stabbed! 😊

After all said and done I’m definitely in a far better place than I was even just last week after the second hospital stay for the internal bleed.

Onwards and hopefully “upwards” to infinity and beyond! 😊👍

User

Posted 13 Jul 2023 at 10:34

Your doing great Greg and good luck with the ‘upwards’ bit.

I got a text this morning from my pharmacist saying that my ‘wonky Willy’ corrector device(SOMACorrect) had arrived so I’ll be doing a fair bit of pumping in the hope I can keep it ‘straight up’ too!😊

you’ve just GOT to laugh….or cry😪 but laughing is better for the soul and your sanity!🤣🤣🤣

User

Posted 13 Jul 2023 at 10:53

Cheers Derek

Gotta keep smiling and hoping for the best.
Good luck with your new device, hope it works well for you.

It’s a right old kerfuffle this cancer lark isn’t it. 😁

cheers

Greg.

User

Posted 13 Jul 2023 at 19:38

Hi Greg J,

After all that you've been through, you're doing amazingly well. Long may it continue.

Best wishes.

JedSee.

User

Posted 13 Jul 2023 at 21:55

Thanks JedSee

I hope so .. 🤞🤞

take care

Greg.

User

Posted 15 Jul 2023 at 13:23

Hmm .. 🤔

Still getting small amount of blood in urine. It’s not noticeable in the toilet bowl but it is very evident on the incontinence pad from the occasional small leak I am having.

It maybe looks worse in the pad as it likely spreads in the absorbent material but it’s still a bit of a shock.
It’s dark brown, not light red.

I’ve read that this is normal and can go on for up to 6 weeks?

Anyone else experience this?

I’m 17 days post surgery and 4 days post catheter removal.

cheers

Greg.

User

Posted 15 Jul 2023 at 15:24

Greg, I am never sure about saying normal, it is frequently mentioned and I was still passing a small amount of blood, scabs and debris at least six weeks after surgery. A few weeks after surgery I also passed a kidney stone, that got my attention.

Brown blood is again frequently said the be okay, and bright red blood should be checked out.

Thanks Chris

User

Posted 15 Jul 2023 at 16:05

Thanks Chris

Yeah you’re right, I suppose there is no real normal in this game as we’re all so different.
Saying that I am “glad” that it’s not just me and that others have had similar.

I’ll keep an eye on it and if it continues or gets worse I’ll give my CNS a call.

I feel a bit abandoned after my surgery to be honest. The only appointment that I have now is a phone call with the surgeon at the end of August. I guess I just keep my head down and keep going and if anything happens I just call the urology department at my local hospital.

Take care

Greg.

User

Posted 15 Jul 2023 at 17:49

TBH Greg, I think many of us feel a bit abandoned after treatment is finished. I know I do, but I think youve got to be proactive in addressing any issues you have to get them sorted.

You know about my issues with Peyronie’s disease, I would have waited probably at least a year to get an an appointment with a Specialist on the NHS, which is why I decided to go ahead and pay privately to get a diagnosis…and now I’ve got what I need to try and get it fixed….on the NHS🤷🏼‍♂️

Also my joint stiffness and aches were really beginning to really affect my QOL…every joint in my body was affected. I searched high and low for a solution as it was getting to me. I’ve come to the conclusion through my own research that the joint ache is caused by muscle loss because of this damned HT treatment. I was already going to the gym but my son told me you have to push yourself as far as you can to build muscle, so it’s not reps that count but the weights you’re lifting. Also asking for advice on here someone mentioned swimming…so I’m now doing that several times a week. I can honestly say I am really beginning to feel a difference. In my view anyone on HT should be given advice and even prescribed a gym membership along with a strict program to adhere to to prevent muscle loss. if you’re in a manual job(we have a landscape gardener in our Maggies Group) you’re probably working your muscles every day…but if your retired like me maybe not. I was cycling a lot but now I think that maybe that I was exercising wrong so hopefully this new regime will help me.

so, I’m going to keep pumping and pushing in the hope it’s sorts both these issues. I can live with the rest😊

So, if you’re worried about ANYTHING, do you own research and try things out to help. Maybe it shouldn’t be like this but that’s what I’ve found.

All the best…and keep smiling, it helps immensely 😊

Derek

Edited by member 15 Jul 2023 at 17:55 | Reason: Not specified

User

Posted 15 Jul 2023 at 18:03

Thanks Derek

It’s a right old palava this isn’t it. 🥴

I thought I would have follow up appointments with the urologist, CNS and maybe incontinence nurse but so far no word.

I really need to start exercising but I’m absolutely knackered since the fortnight of problems I had.
I spoke to my GP yesterday and he reckons that it’ll take at least 3 months for my blood to recover from the anemia, separately from the normal surgical recovery (which will be slightly longer for me because of the hematoma and my inflammatory arthritis).

I’m going to take another week for more recovery and if things haven’t changed I’ll start to make some calls to see if I can have a sit down with some of the medical team to discuss.

Thanks for the heads up 👍

cheers

Greg.

Edited by member 15 Jul 2023 at 18:04 | Reason: Not specified

User

Posted 16 Jul 2023 at 00:08

I think you have unrealistic expectations. Until recently it was standard to get a starting sicknote of 8 weeks after RP and then another 4 weeks if you needed it. Recovery after abdominal surgery uses approx 4700 kcalories per day - far more than you would normally consume so the body has to use up reserves - that's why people feel so exhausted for a while afterwards. By 6 weeks, some men are moving around freely and may be back up to a few kilometres walking but for many, just getting round the block a couple of times is an achievement!

If you try to do too much too soon, you can delay your recovery. The risk of hernia is also significant. Try not to stress so much; it isn't very helpful.

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

User

Posted 16 Jul 2023 at 08:33

Thanks Lyn,

To be fair I don’t have any expectations as I have no idea what is normal, abnormal, right or wrong. I’ve never done anything remotely like this, I’ve never even had minor surgery, never mind major surgery.

I think that’s why I’m always fishing for info, confirmation and reassurance.

At the moment I’m just walking around the house and garden.
I guess it’s a bit more complicated for me than a normal recovery because of the anemia. It’s making me exhausted a lot of then time, (standing from sitting can send my heart rate from the 70’s up to the 110’s and 120’s)

Also the type of inflammatory arthritis I have plays a major role in fatigue levels. Now recovery from surgery on top is like “inflammation overload!” … cheesus! Gimme a break! 🥴

From the info and responses I’ve had it sounds like I’m heading in the right direction at least so I’ll go with that. 😊👍

Thanks

Greg.

User

Posted 16 Jul 2023 at 13:56

I would say you certainly ARE heading in the right direction Greg. When you think where you were after surgery it seems to me you have done very well.
I hope nobody thinks I was suggesting you start running marathons(or doing anything physical for that matter) when I said I think you need to be proactive with your recovery! What I meant that before and during treatment I was given lots of information, but since RT finished I feel I have been left to myself to deal with the side effects of the treatment. Only by being proactive in finding information and taking appropriate steps to aid my own recovery have I managed to deal with some of them. This forum and Maggies have been an immense help in doing this.

I obviously can’t speak from personal experience, only from the many guys I have met through Maggies that have had surgery and they ALL say the same…you need to be patient and not expect too much too soon,.

I’m sure you will begin to see real improvement soon.

Right, off to watch the tennis…come on Carlos!

Derek

User

Posted 16 Jul 2023 at 14:12

What's "tennis" ???
:)

User

Posted 16 Jul 2023 at 14:33

I knew exactly what you meant Derek, no worries. I knew you meant it in the context of feeling a little abandoned after treatment, I agree and definitely feel the same.

I think that we should perhaps be given comprehensive literature packs about our post treatment recovery, highlighting things we need to watch for, things that will happen, things that could happen and perhaps even “road markers” to let us know we are heading the right way.

Not sure if that makes any sense or not but personally I think that kind of info would be very beneficial and save us wondering and searching on Dr Google 😁

One thing that’s keeping me sane is the thought of that ice cold beer in a few weeks. Hmmmm …

I’m sure I could have one now, in fact one of the nurses even said as much, but I think my body has enough to deal with at the moment so I’ll hold off until I definitely feel I’ve turned the first corner.
I just know it’s going to taste bloody awesome though! 😂🤣 🍺

Cheers

Greg

Edited by member 16 Jul 2023 at 14:35 | Reason: Typo

User

Posted 16 Jul 2023 at 15:51

"I think that we should perhaps be given comprehensive literature packs about our post treatment recovery, highlighting things we need to watch for, things that will happen, things that could happen and perhaps even “road markers” to let us know we are heading the right way"

It varies from hospital to hospital. Some hand out a post-RP info pack or paper copies of the PCUK toolkit, some give patients a leaflet with the website address snd phone number to order a copy of the toolkit directly from the charity, some just advise men to come to this website and some don't do anything at all You can download the individual sheets from the main PCUK website.

Edited by member 16 Jul 2023 at 15:51 | Reason: Not specified

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

User

Posted 16 Jul 2023 at 16:55

Thanks Lyn 👍

User

Posted 17 Jul 2023 at 18:06

Well…today was a strange one! It shows how different we all are.

I’m 19 days post op (with post complications) and 6 days post catheter removal … and today I had a voluntary/spontaneous erection. 😳😊
Apologies if I’ve used the incorrect term but basically it was unaided by drugs or device.

Maybe my luck has turned.
Should maybe put an extra lottery ticket on this week 😁

Cheers

Greg.

User

Posted 17 Jul 2023 at 19:05

You lucky lucky b_gger :) :)
Well done, unfortunately I will never get another one unless anyone who has not had nerve sparing can tell me otherwise.

Mind you, I did find this awesome willy massager that works on floppy willies.

Did they tell you that your op was nerve sparing?

Well done!

Steve

User

Posted 17 Jul 2023 at 20:41

Hi Greg J,

Well done you 😀.

Yes, buy that extra Lottery ticket!

Best wishes,

JedSee.

User

Posted 17 Jul 2023 at 20:42

Cheers Steve

Let’s see if I can keep it up, pun intended. Could be just beginners luck.

Yes, the surgeon said after the op that he managed bilateral nerve sparing and my post op printed letter that I was given on discharge also said that.

He did say, in my pre-op discussion, that he was sure he could manage BL nerve sparing but I obviously was a little anxious that things could change once he was in there rummaging about.
Of course the most important thing is the result of my first PSA test in a few weeks.
Cheers

Greg.

User

Posted 17 Jul 2023 at 20:43

Haha, thanks JedSee

I think I should

cheers

Greg.

User

Posted 17 Jul 2023 at 22:11

That must have been quite pleasantly surprising for you Greg after all you’ve been through.

Congratulations ….and onwards and upwards seems VERY appropriate! 🤣🤣🤣

as my Pharmacist said to me as he handed over my Viagra ‘All the best!’😊

Derek

User

Posted 18 Jul 2023 at 09:24

Haha

Was certainly a surprise Derek, sort of a mixture of surprise, shock, joy and horror! 😂

I still have a lot of dark purple bruising all over my pelvis and sides and my old man, although definitely better than just after the op, still resembles an aubergine 🍆 🤣

Cheers

Greg.

User

Posted 19 Jul 2023 at 12:35

The pain and aching in my lower abdomen and pelvic region hasn’t got much better in the 3 weeks since my surgery.

I’m sure some of it will be the hematoma I had but that’s mainly to the left of my navel and down into my pelvis. The ache is across the whole area really.

I guess this is just normal healing from the surgery?
Anybody else experience the same post RP?

cheers

Greg.

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