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My RALP

User
Posted 07 Nov 2019 at 11:57

Being a newbie to the cancer business, I wanted to start a thread to track my progress through RP surgery. (I'll start another one to cover what got me here in the first place).

So, it's T-minus (less than 24 hours ish) to my RP, I'm feeling calm and relaxed and about to have lunch (which will be my last meal before I meet Leonardo da Vinci's amazing machine in the morning.)

Being a great procrastinator, I haven't done much in the way of preparation apart from buying a waterproof mattress this morning. 

Yep, I reckon I'm ready.

 

Edited by member 07 Nov 2019 at 12:22  | Reason: Typo's

User
Posted 07 Nov 2019 at 12:52

Recommend a bucket or washing up bowl by your bed to put your overnight urine bag in. Don’t forget to swap to the longer hose!!!!

User
Posted 07 Nov 2019 at 16:25
Also keep an eye on your superglue stitches. The pop easily and can go runny.
User
Posted 10 Nov 2019 at 23:27

Kev 

Irrespective of where you wear your bag, make sure the catheter is securely attached to the thigh strap and that the thigh strap is firmly attached to the thigh. Also make sure the catheter is correctly in the strap with the rubber strap in the Y of the catheter so if it is accidentally pulled in will not pull on the penis. 

To shower I empty the leg bag and remove the bag straps, leave the catheter and  leg bag attached to  the thigh strap and shower, I dry myself then put a dry strap on the opposite leg and transfer the catheter etc to the dry strap. Re  attach the leg bag straps. Remove the wet strap and dry ready for the next shower. 

Make sure you close the leg bag tap before removing the night bag.

Thanks Chris

Edited by member 11 Nov 2019 at 06:53  | Reason: Spelling

User
Posted 14 Nov 2019 at 11:12

Just received the bad news this week, doctor said RALP is probably my best option. So I though I do some research, see what the road ahead looks like. 

Thanks Kev for starting this post.

Craig

User
Posted 17 Nov 2019 at 21:08
Completely acceptable at this stage, dont panic
User
Posted 09 Nov 2024 at 05:48

Cheers Adrian,

Your posts always make me chuckle. Don't ever change, we all need humour in our lives, especially in the cancer club.

 

Hi Peter, 

That's what I call romance 😁

My Mrs proposed in a hot tub wearing a red swimsuit. Apparently legend has it that ladies had to wear a red petticoat to propose 🤷‍♂️

I was just grateful that someone would want a multi millionaire like me. 

Cheers, 

Kev.

User
Posted 07 Nov 2019 at 13:28

kev

Search for shopping in the search facility, it will be come up with a relevant conversation and within is a link to a similar conversation.  My top tips avoid constipation and get some instilagel or hydrocaine to lubricate the catheter. If you are having the retzius version of the  op you will not need it. 

Hope all goes well.

Thanks Chris

 

User
Posted 07 Nov 2019 at 15:08

Have a look at "My head's still spinning" by Staggered, particularly LynEyre's post. Try to get referred to the ED nurses as soon as possible.

Hope it all goes well.

User
Posted 09 Nov 2019 at 15:50
Strange, as after my operation I was looking forward to trying medical-grade opiates for the first time in my 'innocent life' 😂, but they said 'We can offer you ibuprofen if you like', which I didn't need much of anyway.

Best of luck with your recuperation.

Cheers, John.

User
Posted 09 Nov 2019 at 17:52
Did you have a nerve block into your spinal cord though, Bollinge?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2019 at 10:51

Kev

A few days after my RARP I also suffered an excruciating pain in the abdominal area that resulted in paramedics, 30 mg ?  of morphine and a ride to hospital in an ambulance. After a few hours I was given the option of going to the urology ward at a different hospital or going home, I chose to go home. We decided it was constipation,  my bladder spasms are uncomfortable but only lasts for a minute or so and are usually or accompanied with leaking urine. Painkillers can   cause constipation. 

Thanks Chris

 

User
Posted 14 Nov 2019 at 12:27

Originally Posted by: Online Community Member

Just received the bad news this week, doctor said RALP is probably my best option. So I though I do some research, see what the road ahead looks like. 

Thanks Kev for starting this post.

Craig

Hi Craig,

If you like, start a new thread under your own name, and fill in the full details of your diagnosis (PIRADS, Gleason score, PSA readings, etc., which may not necessarily be that ‘bad news’) and that will help the good people here to offer you advice on the way ahead - if you need it.

Best of luck.

Cheers, John.

User
Posted 14 Nov 2019 at 12:53

Hi Craig,
My decision for RALP was unanimous between my oncologist, surgeon and myself with backing from my partner.

I'd consider the following:
Nerve sparing.. (no guarantee of course).
Penis: may be a bit shorter after.
There'll be pain and discomfort but I was quite comfortable by day 2.
The catheter can be uncomfortable and cumbersome, you need to keep an eye on the bag! I needed help with emptying as it's strapped to my calf (may be an issue if you're single).
On a busy ward, it helps to have a partner to fight your corner sometimes.
There'll be a wait for final pathology so it'll be a bit like the biopsy one I guess.

Prep:
I'm no athlete but do use a gym, so bearing in mind comments about shoulder pain, I used the arm bike(?) machine a lot. As well as using gym equipment I went running. I figured I needed to be in the best shape possible. I think this focussed my mind and cleared my head and gave me a positive attitude, so by the day of the op, I can honestly say that I was ready.

Apart from that, others have listed useful stuff like mattress protector, icopads etc.. as theres bound to be the odd drip when changing night bag etc..

I have no regrets (well too late now anyway)

I hope this helps in some way and best of luck.
Kev.

Edited by member 14 Nov 2019 at 14:10  | Reason: Typo

User
Posted 14 Nov 2019 at 12:57

Thanks John, will think about it.

 

Gleason score of 7 and PSA of 13.8, my PSA reading did jump from 11 in the 4 weeks between the tests. Not sure if this is an indicator or just normal. I had been fit until the last 12 months. Started to suffer with pain in my right hip last May.

User
Posted 15 Nov 2019 at 08:49

Hi Kev

Sounds like you are making steady progress. Due for my Retzius sparing RARP + neurosafe in just over a week. One pre-op yesterday the nurse mentioned about scrotal swelling and said to be prepared for significant swelling as the bruising comes out. She said although from outside the surgery looks minor inside it’s quite a different story and takes quite a while to settle. Defo get it checked out for reassurance but sound like you are on a good road to recovery. Will start a thread too when things kick off.

best of luck and keep those tips and updates coming as they are invaluable.

TG

User
Posted 15 Nov 2019 at 16:12

End of week 1
It is now exactly one week on from my surgery so this serves as an update/summary.

Hospital visit done: haemoglobin ok, so looks like I'll be having those anti-coagulant injections after all (30 days).
Doctor assured me that my grapefruit sized scrotum would return to normal and that no she didn't want to see it.

Returning Monday 18th to TWOC (Trial WithOut Catheter) so fingers crossed.

A summary of highs and lows below, (highs outweigh the lows):

Highs:
Surgery over and moved to the ward.
A bed by the nurses station where I could see down the corridor.
Pain under control.
Watching the Sunrise.
Surgeon advises successful operation, good margin and nerves spared.
That bowl of rice crispies when allowed to eat for the first time.
Getting out of bed for the first time. (and shuffling to the day room for a smooch with my better half).
Less frequent ob's at night.
A good night's sleep.
My first shower.
The visitor who brought a box of trivial pursuit questions and the laugh a minute quiz we had in our bay (we called cancer corner).
Going home.
My own bed.
My own sofa.
My first poo.


Lows:
Some pain.
1 hourly ob's.
Room mate's suffering.
Not going home first night as planned.
Two excruciatingly painful spasms.
That itchy staple.

Oh yeah, the catheter.

 

Edited by member 15 Nov 2019 at 16:23  | Reason: Typos

User
Posted 15 Nov 2019 at 17:17

Hope you don't get any more spasms. May be worth getting some Buscopan or equivalent. Check out my post from 9th September.

User
Posted 16 Nov 2019 at 01:50

Originally Posted by: Online Community Member
Did you have a nerve block into your spinal cord though, Bollinge?

Yes Matron, I had a spinal injection which I referred to as an epidural, but the anaesthetist told me it was not that. Can’t remember what she said it was called.

She also seemed intrigued when I asked her exactly what drugs she was pumping into me, and we discussed their uses / and recreational abuses, including the opioid Fentanyl. She was probably glad when she finally knocked me out to shut me up!

Anyway, she did a bloody good job.

Cheers, John.

Edited by member 16 Nov 2019 at 04:23  | Reason: Not specified

User
Posted 16 Nov 2019 at 10:48
You should feel an awful lot better once the staples are removed, Kev. They really pull on the edges of the wound. When mine were removed it was instantly much less painful to walk.

Very best wishes for your recovery,

Chris

User
Posted 16 Nov 2019 at 11:28

Originally Posted by: Online Community Member
I was going to ask you about the spinal tap...answers that question.

Mention it to your anaesthetist to see if they feel it appropriate, don’t forget my surgery was on the NHS by Professorwhocannotbenamedhere at Guildford, so your anaesthetist will surely be a different one.

Cheers, John.

User
Posted 16 Nov 2019 at 12:23

Hi John

Ah yes forgot that. Epidural is also the path for me I believe via the pre-op staff. 

Seems to be favoured as less load on heart/lungs/immune system apparently. I wonder if it will cure me of my fear of needles. Had so many now the bloods on Thursday I didn’t even break into a sweat 😲

cheers

TG

User
Posted 16 Nov 2019 at 13:24

Thanks for the kind messages of support, it's great to see all the advice and encouragement.

Hey TG, looking forward to tracking your progress when you have your op, good luck!

User
Posted 22 Nov 2019 at 17:59
Interesting - men are usually dry at night first, and then daytime control comes later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2019 at 16:55

End of week 4
Today is exactly 4 weeks since my RALP surgery.

Mobility is still improving although I don't feel a huge change over the last few days. (Most of the action is in the first two weeks, while the third is wow I feel great!) This week, however, I just feel flat.

Today marks the end of the Dalteparin anti coagulation injections (not fond of needles so I'm glad to see the back of them).
My scars are healing nicely including the one that gapped which is almost done, but still being dressed by the nurse (no idea where the thick scab from above my navel went).
 
Still getting the occasional blockage when trying to pee, until debris shoots out and I get a good flow again (yes it p***** me off).
Still getting up 3-4 times a night to pee.

Only two more weeks before I can drive again so I'm counting down the days. Woohoo!

Then last but not least, the post-op appointment with my consultant is on the 24th. His letter to my GP including a comment from the pathologist regarding base margin, gives us a heads up of a possible T3a (upgrades seem common if other posts are anything to go by).

User
Posted 06 Dec 2019 at 17:02

Kev

Looks like you’re making steady progress.

Good luck for the meeting on the 24th and may you enjoy feet up a bit with a tipple over the festive period with friends and family.

TG

 

User
Posted 06 Dec 2019 at 18:08
I wish you 100% success with your results. I don’t mean to pee on your parade but champagne isn’t best known for keeping. Best get a new one to avoid disappointment lol. Good luck
User
Posted 06 Dec 2019 at 22:18

Good to hear your progress . All the best to you.  

User
Posted 07 Dec 2019 at 09:22

Wishing you as others have said well with your results. 

User
Posted 09 Dec 2019 at 12:20

Hi Kev

 

It was good to read your post although when I read all the tough stuff you have had to go through I feel incredibly lucky that my RAPR seems to have gone remarkably well with very limited SE.

 

I had my PR removed at London Bridge hospital less than 2 weeks ago. Apart from shoulder pain, particularly the right shoulder - linked as others have mentioned to diaphragm pushing down during op and CO2 - some general tenderness around the wounds etc I was able to stop all paracetamol and ibuprofen a week after the operation.  I had none of the swollen scrotum, bowel, catheter and peeing issues you have described.

 

Like you sleep in hospital was at best fitful as the nursing staff did regular checks throughout the night, particularly the first night; my operation was late evening and I was only back in my room at 20:30.  Ice-cream and yoghurt only for supper after having had nothing to eat all day!

 

I had no abdominal drain post op and my 6 wounds were all closed with what looks like a clear plastic adhesive; no redness, all flat and no staples.  There was some bruising and tenderness around the big 2inch cut above my belly button.

 

The hospital physio had me up and doing a corridor walk on the morning after the operation.  I could walk ‘tall’, take steps - no shuffling - and could sit up and get out of bed relatively easily.  I coud bend down although obviously coughing was sore. I was able to shower on day 2 after the operation.

 

I was in the hospital for 3 nights and then got train from London Bridge - we missed the terrorist incident there by 15 minutes; we were on a 13:45 train and the incident kicked off at 14:00 - to Gatwick for flight to Jersey late Friday afternoon flight.  All went fine and assistance at Gatwick was great.  

 

It was good to get home and I slept in a spare bedroom; sleep was fitful as I was suffering from severe headaches which were linked to very high blood pressure.  My GP prescribed medication to control this last Monday and apart from BP falling a bit I feel a lot better.

 

I had my catheter - I had the penile catheter rather than the supra pelvic one - removed last Thursday - 9 days after surgery - and this was a big relief.  I am delighted I am completely dry and in control.  No leaks or need for pads, waterproof mattress cover etc.

 

It turns out that RP was the right call as during the RP surgery the surgeon established that the cancer had spread outside the capsule - something that was not evident from MRI scan etc - and he took out some margin. I am now in the holding pattern of monitoring PSA results in 4 weeks time and quarterly thereafter to establish if in fact the surgeon got it all. Apparently Brachy would not have been an option if it had been established that my cancer had spread outside the capsule.

 

And then last night was delighted to wake up during the night with a strong hard nocturnal erection!

 

So all good right now and I am feeling fine and strong.  I have been for walks on the beach, and been into town for Christmas market and even attended a Christmas drinks party on Saturday night.

So I feel very fortunate and hope your recovery continues to improve each day.

Cheers

Grant60

User
Posted 24 Dec 2019 at 19:53

Hi Kev

Tip top result for histology. Enjoy the tipple and have a fantastic festive break.

TG

Edited by member 25 Dec 2019 at 09:09  | Reason: Not specified

User
Posted 25 Dec 2019 at 07:25

Good to hear Kev. 

User
Posted 26 Dec 2019 at 10:20

Originally Posted by: Online Community Member
I wish you 100% success with your results. I don’t mean to pee on your parade but champagne isn’t best known for keeping. Best get a new one to avoid disappointment lol. Good luck

Hi Chris,

You were spot on.. the champagne opened like a dry orgasm and was the same colour as the contents of a catheter bag. I still drank some though (until my other half threw it down the sink). We re-toasted with a back-up bottle of Prosecco.

Good health everyone!

Kev.

User
Posted 26 Dec 2019 at 11:08

Made the same mistake a few years back with a case of Bollinger. Got handed down from my father. Think he won it randomly on a credit card competition mid 80s. When opened it tasted like sherry 😬 Such a waste of the 8 bottles left 😒

User
Posted 12 Feb 2020 at 12:59

Fantastic news Kev. Enjoy the break 🍻

TG

User
Posted 11 Jun 2020 at 15:39
👍 Excellent news. Hope it continues

Cheers

Bill

User
Posted 11 Jun 2020 at 16:08

Great result. Long may that continue.

Best wishes,

Ido4

User
Posted 11 Jun 2020 at 18:34

Kev T

Great news .

Thanks Chris

User
Posted 12 Jun 2020 at 15:44

Fantastic news.

Those PSA tests are character building to say the least. 

Hope those beers took some damage :-)

Simon

User
Posted 02 Oct 2020 at 16:28

Third PSA post-op result is <0.03 undetectable.

I emailed PALS after having difficulty contacting the hospital and having appointments cancelled due to covid. The result being a PSA test form, and a new ED appointment next week replacing the one they cancelled. Result!

ED wise, things are definitely improving. Nowhere near pre-OP standards, but I can manage penetration now which is a huge psychological boost. I owe a big thanks to all those on this site who have posted some fantastic advice on the subject.

To everyone else still struggling, try not to be disheartened, don't give up but keep trying. 

I might even have a celebratory beer tonight.. and I will raise my glass to everyone on here.

Cheers and good luck. 

Kev.

User
Posted 13 Apr 2021 at 22:12

Update:

Just had my fourth PSA result at 17 months post op and it's undetectable. Last year, at my delayed 6 month telephone consultation, it was decided that as it was so close to a year, I was moving to six monthly tests (yes I protested).
Still doing my PFE's and using the pump every day. Continence is good and I'm making progress on the ED front. I have been prescribed injections but hopefully if I keep making 'natural' progress, this will not have to be long term solution.

Good luck everyone. 

Kev.

User
Posted 26 Oct 2021 at 14:59

If I could remember my last orgasm 😭

It's true though - breast milk probably has more PSA in it than you have at the moment. John's PSA has been bobbing at the 0.1 Mark for 8 years now and he is fine - we don't worry about it any more. Onco says he may just be a naturally high producer of non-prostate specific PSA 🤷‍♀️

Edited by member 26 Oct 2021 at 15:03  | Reason: Not specified

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

User
Posted 08 Nov 2024 at 18:26

What an honest and informative  thread Kev. Congratulations, mate, on you 5th Ralpiversary. I shall definitely be having a drink to celebrate with you. 🍻

PS: I miss my nocturnal erections. They stopped me from rolling out of bed. 😁

Edited by member 08 Nov 2024 at 22:29  | Reason: Additional text

User
Posted 08 Nov 2024 at 18:50
Kev funnily enough my now wife proposed to me 29 Feb 2016, I'd started HT Oct 2015, was on abiraterone, enzalutimide, prednisolone on trial. About 7am she proposed, in an obvious 'stupour' I said I suppose and went back to sleep, she went to work.

Peter

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User
Posted 07 Nov 2019 at 12:52

Recommend a bucket or washing up bowl by your bed to put your overnight urine bag in. Don’t forget to swap to the longer hose!!!!

User
Posted 07 Nov 2019 at 13:28

kev

Search for shopping in the search facility, it will be come up with a relevant conversation and within is a link to a similar conversation.  My top tips avoid constipation and get some instilagel or hydrocaine to lubricate the catheter. If you are having the retzius version of the  op you will not need it. 

Hope all goes well.

Thanks Chris

 

User
Posted 07 Nov 2019 at 15:08

Have a look at "My head's still spinning" by Staggered, particularly LynEyre's post. Try to get referred to the ED nurses as soon as possible.

Hope it all goes well.

User
Posted 07 Nov 2019 at 16:25
Also keep an eye on your superglue stitches. The pop easily and can go runny.
User
Posted 09 Nov 2019 at 14:49

Thanks for the good advice.

Here's how it went..

I was in the anaesthetic room at 8:30AM.

Next thing it was 1PM and I was in recovery. My teeth were chattering like mad, so they put what looked like a tumble dryer hose between my legs which was lovely and warm. I had flowtrons on my legs that run on compressed air. I've got staples which are a bit sore. Fair amount of pain at this point so I had some morphine before going up to the ward around 4 ish.

 

User
Posted 09 Nov 2019 at 14:57

Met my surgeon this morning and the magins were good so he was able to save both nerve bundles.

The pain is as you'd expect, and once releif kicks in I feel quite comfortable .

I have a leg bag for the catheter and have had a short walk to the day room and back. Tried putting my underpants on but they're a bit uncomfortable so took them off again. Hoping to go home soon.

User
Posted 09 Nov 2019 at 15:50
Strange, as after my operation I was looking forward to trying medical-grade opiates for the first time in my 'innocent life' 😂, but they said 'We can offer you ibuprofen if you like', which I didn't need much of anyway.

Best of luck with your recuperation.

Cheers, John.

User
Posted 09 Nov 2019 at 17:52
Did you have a nerve block into your spinal cord though, Bollinge?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Nov 2019 at 04:03

Nerve block sounds nice, for me it was a canular, I recall they gave me some antibiotics before putting me under.

Edited by member 10 Nov 2019 at 04:53  | Reason: Typo's

User
Posted 10 Nov 2019 at 04:16

Didn't go home in the end as my haemoglobin had dropped. Although I found this a real blow at the time, I think in hindsight I needed an extra night.

The pain seems in three parts:

A feeling of chronic indigestion in my abdomen, a strong dull ache inside my perineum, and soreness around the staples.

The chest drain took a bit of persuasion to get out and felt like mild idigestion rather than a tickle. 

User
Posted 10 Nov 2019 at 04:24

Cheers John,

I think they felt sorry for me in recovery as I told them my other half had my wallet and was probably shoe shopping.

There was some good banter which really helped me.

User
Posted 10 Nov 2019 at 08:57

Originally Posted by: Online Community Member
Strange, as after my operation I was looking forward to trying medical-grade opiates for the first time in my 'innocent life' 😂, but they said 'We can offer you ibuprofen if you like', which I didn't need much of anyway.

Best of luck with your recuperation.

Cheers, John.

Don't be too keen to try opiates, John. They caused me horrendous constipation, which was pretty awful to deal with, with the pain of surgical wounds. 

I found the most effective pain relief after my surgery to be intravenous paracetamol. Great stuff!

Cheers,

Chris

 

User
Posted 10 Nov 2019 at 21:32

Second night in hospital was reasonably comfortable, I managed to sleep from past 10ish to at least 4AM.

Spent the day taking it very easy. Sitting was very uncomfortable so I found standing up at the end of the bed to be a relief.

Emptying the leg bag was a challenge, and I couldn't do it without my other half. This turned out to be invaluable practice once home.

 

User
Posted 10 Nov 2019 at 21:41

Kev 

I am guessing your leg bag is on your calf and you are struggling to bend. It will get easier to bend, or you could ask for a leg bag with a short tube and wear it on the thigh or across the knee.

Thanks Chris

User
Posted 10 Nov 2019 at 21:49

Home at last!

We got home around 6PM, only a short drive but I felt every bump in the road.

Once home, there's a dilemma, bed or sofa? Toilet's upstairs but being slumped on the sofa felt so good, well it did until the bag needed emptying. Got up the stairs and we emptied the bag without incident, although I got the shakes afterwards (not sure if it was releif or anxiety).

Mattress protector is on the bed and the bag stand is ready and looks quite sturdy..

Looking forward to a night in my own bed.

User
Posted 10 Nov 2019 at 21:55

Hi Chris, I hadn't thought of that, but we moved the bag from outside to inside my calf which gives the tube a little more slack now as it's no longer crossing my knee (therefore easier going up the stairs).

User
Posted 10 Nov 2019 at 23:27

Kev 

Irrespective of where you wear your bag, make sure the catheter is securely attached to the thigh strap and that the thigh strap is firmly attached to the thigh. Also make sure the catheter is correctly in the strap with the rubber strap in the Y of the catheter so if it is accidentally pulled in will not pull on the penis. 

To shower I empty the leg bag and remove the bag straps, leave the catheter and  leg bag attached to  the thigh strap and shower, I dry myself then put a dry strap on the opposite leg and transfer the catheter etc to the dry strap. Re  attach the leg bag straps. Remove the wet strap and dry ready for the next shower. 

Make sure you close the leg bag tap before removing the night bag.

Thanks Chris

Edited by member 11 Nov 2019 at 06:53  | Reason: Spelling

User
Posted 11 Nov 2019 at 14:41

Hi Chris,

My Y connector is attached to a patch glued to my left thigh so unfortunately I can't switch sides. There was a chair in the hospital shower so I left the bag on it until I was dry, might try a stool next time as I had to hold the bag with one hand this morning.

Our shower is in the bath so I used one of those short plastic steps to get me over the threshold. 

User
Posted 11 Nov 2019 at 16:58

Kev

I use the adhesive patch that has a clip attached, mine are the statlock brand. They are far better than straps , getting them wet is not an issue. I remember when I had my first post op catheter and how tentative I was with it, I found that some of the other brands are not as secure.  Did you get some instilagel or hydrocaine in case the end of the penis gets sore.

Take it easy but not too easy.

Thanks Chris.

Edited by member 11 Nov 2019 at 17:00  | Reason: Not specified

User
Posted 11 Nov 2019 at 20:00

Hi Chris,

Yes mine is statlock and like you I'm very cautious with it being early days for me, (and I don't know how robust it is). The hose is ruggedised so not flexible enough to wear the bag within reach, so for now my other half does the straps for me.

The gel is a good call so will get some as it does get a bit sticky.

Thanks

User
Posted 12 Nov 2019 at 07:51

Managed to have a successful poo, so I thought I'd share what worked for me, I started another thread to cover it.

This may or may not help others but I hope it does.

User
Posted 13 Nov 2019 at 09:18

Having said that, the second one was like a dry hedgehog, and left my belly feeling very tight. On the plus side, it's nice to have things moving again, but clearly my bowels are trying to reorganize and I'll have to be patient.

User
Posted 14 Nov 2019 at 10:07

Yesterday turned out a bit difficult, I had a couple of incredibly painful cramps which lasted a good 5 minutes or so each and left me feeling washed out for the rest of the day. The sensation was like a strong tightening across my front just below the navel which slowly subsided leaving me a bit shakey. Not sure what triggered them but the first one was not long after getting up from the toilet. Bladder spasm maybe? Got to say I had gallstones several years ago and the intensity and sensation was similar (different part of the body obv's).

Apart from that I'm pain free although I've been taking paracetamol since leaving hospital (other half believes in pain management) so maybe the pain could have been worse.

User
Posted 14 Nov 2019 at 10:51

Kev

A few days after my RARP I also suffered an excruciating pain in the abdominal area that resulted in paramedics, 30 mg ?  of morphine and a ride to hospital in an ambulance. After a few hours I was given the option of going to the urology ward at a different hospital or going home, I chose to go home. We decided it was constipation,  my bladder spasms are uncomfortable but only lasts for a minute or so and are usually or accompanied with leaking urine. Painkillers can   cause constipation. 

Thanks Chris

 

User
Posted 14 Nov 2019 at 11:12

Just received the bad news this week, doctor said RALP is probably my best option. So I though I do some research, see what the road ahead looks like. 

Thanks Kev for starting this post.

Craig

User
Posted 14 Nov 2019 at 12:27

Originally Posted by: Online Community Member

Just received the bad news this week, doctor said RALP is probably my best option. So I though I do some research, see what the road ahead looks like. 

Thanks Kev for starting this post.

Craig

Hi Craig,

If you like, start a new thread under your own name, and fill in the full details of your diagnosis (PIRADS, Gleason score, PSA readings, etc., which may not necessarily be that ‘bad news’) and that will help the good people here to offer you advice on the way ahead - if you need it.

Best of luck.

Cheers, John.

User
Posted 14 Nov 2019 at 12:53

Hi Craig,
My decision for RALP was unanimous between my oncologist, surgeon and myself with backing from my partner.

I'd consider the following:
Nerve sparing.. (no guarantee of course).
Penis: may be a bit shorter after.
There'll be pain and discomfort but I was quite comfortable by day 2.
The catheter can be uncomfortable and cumbersome, you need to keep an eye on the bag! I needed help with emptying as it's strapped to my calf (may be an issue if you're single).
On a busy ward, it helps to have a partner to fight your corner sometimes.
There'll be a wait for final pathology so it'll be a bit like the biopsy one I guess.

Prep:
I'm no athlete but do use a gym, so bearing in mind comments about shoulder pain, I used the arm bike(?) machine a lot. As well as using gym equipment I went running. I figured I needed to be in the best shape possible. I think this focussed my mind and cleared my head and gave me a positive attitude, so by the day of the op, I can honestly say that I was ready.

Apart from that, others have listed useful stuff like mattress protector, icopads etc.. as theres bound to be the odd drip when changing night bag etc..

I have no regrets (well too late now anyway)

I hope this helps in some way and best of luck.
Kev.

Edited by member 14 Nov 2019 at 14:10  | Reason: Typo

User
Posted 14 Nov 2019 at 12:57

Thanks John, will think about it.

 

Gleason score of 7 and PSA of 13.8, my PSA reading did jump from 11 in the 4 weeks between the tests. Not sure if this is an indicator or just normal. I had been fit until the last 12 months. Started to suffer with pain in my right hip last May.

User
Posted 14 Nov 2019 at 21:16

Pretty good day today. More mobility but definitely taking it easy.. took dressings off to see my new body piercings (21 staples in total) and a couple smart a bit.

Bowel movements working themselves out now (see what I did there?)

Interesting to see some debris flow through catheter tube as I was having a poo (guess a nugget tapped my bladder).

Looking forward to getting out to hospital tomorrow for a review on my haemoglobin and decision on blood thinning, bit early to get catheter or staples out yet (maybe next week).

P.S. My scrotum is the size of a grapefruit, it's not painful just uncomfortable, so I'll ask the doctor about it .

Edited by member 15 Nov 2019 at 06:23  | Reason: Not specified

User
Posted 15 Nov 2019 at 08:49

Hi Kev

Sounds like you are making steady progress. Due for my Retzius sparing RARP + neurosafe in just over a week. One pre-op yesterday the nurse mentioned about scrotal swelling and said to be prepared for significant swelling as the bruising comes out. She said although from outside the surgery looks minor inside it’s quite a different story and takes quite a while to settle. Defo get it checked out for reassurance but sound like you are on a good road to recovery. Will start a thread too when things kick off.

best of luck and keep those tips and updates coming as they are invaluable.

TG

User
Posted 15 Nov 2019 at 16:12

End of week 1
It is now exactly one week on from my surgery so this serves as an update/summary.

Hospital visit done: haemoglobin ok, so looks like I'll be having those anti-coagulant injections after all (30 days).
Doctor assured me that my grapefruit sized scrotum would return to normal and that no she didn't want to see it.

Returning Monday 18th to TWOC (Trial WithOut Catheter) so fingers crossed.

A summary of highs and lows below, (highs outweigh the lows):

Highs:
Surgery over and moved to the ward.
A bed by the nurses station where I could see down the corridor.
Pain under control.
Watching the Sunrise.
Surgeon advises successful operation, good margin and nerves spared.
That bowl of rice crispies when allowed to eat for the first time.
Getting out of bed for the first time. (and shuffling to the day room for a smooch with my better half).
Less frequent ob's at night.
A good night's sleep.
My first shower.
The visitor who brought a box of trivial pursuit questions and the laugh a minute quiz we had in our bay (we called cancer corner).
Going home.
My own bed.
My own sofa.
My first poo.


Lows:
Some pain.
1 hourly ob's.
Room mate's suffering.
Not going home first night as planned.
Two excruciatingly painful spasms.
That itchy staple.

Oh yeah, the catheter.

 

Edited by member 15 Nov 2019 at 16:23  | Reason: Typos

User
Posted 15 Nov 2019 at 17:17

Hope you don't get any more spasms. May be worth getting some Buscopan or equivalent. Check out my post from 9th September.

User
Posted 16 Nov 2019 at 01:50

Originally Posted by: Online Community Member
Did you have a nerve block into your spinal cord though, Bollinge?

Yes Matron, I had a spinal injection which I referred to as an epidural, but the anaesthetist told me it was not that. Can’t remember what she said it was called.

She also seemed intrigued when I asked her exactly what drugs she was pumping into me, and we discussed their uses / and recreational abuses, including the opioid Fentanyl. She was probably glad when she finally knocked me out to shut me up!

Anyway, she did a bloody good job.

Cheers, John.

Edited by member 16 Nov 2019 at 04:23  | Reason: Not specified

User
Posted 16 Nov 2019 at 09:58

John, 

I was going to ask you about the spinal tap...answers that question.

Think she will be looking to knock me out pretty quick too. After sedatives/anaesthetic dad jokes are unrelenting. 

TG

User
Posted 16 Nov 2019 at 10:48
You should feel an awful lot better once the staples are removed, Kev. They really pull on the edges of the wound. When mine were removed it was instantly much less painful to walk.

Very best wishes for your recovery,

Chris

User
Posted 16 Nov 2019 at 11:28

Originally Posted by: Online Community Member
I was going to ask you about the spinal tap...answers that question.

Mention it to your anaesthetist to see if they feel it appropriate, don’t forget my surgery was on the NHS by Professorwhocannotbenamedhere at Guildford, so your anaesthetist will surely be a different one.

Cheers, John.

User
Posted 16 Nov 2019 at 12:23

Hi John

Ah yes forgot that. Epidural is also the path for me I believe via the pre-op staff. 

Seems to be favoured as less load on heart/lungs/immune system apparently. I wonder if it will cure me of my fear of needles. Had so many now the bloods on Thursday I didn’t even break into a sweat 😲

cheers

TG

User
Posted 16 Nov 2019 at 13:24

Thanks for the kind messages of support, it's great to see all the advice and encouragement.

Hey TG, looking forward to tracking your progress when you have your op, good luck!

User
Posted 16 Nov 2019 at 21:10

Just had my last antibiotic so that's another step. 

Had a leak of urine and a little blood from the end of my penis while having a poo. Thinking maybe the catheter is causing irritation, it's draining ok and comes out Monday, so I'll see how it goes and phone urology if it persists.

User
Posted 17 Nov 2019 at 21:08
Completely acceptable at this stage, dont panic
User
Posted 18 Nov 2019 at 06:46

Big day today, 10 days post-op and we're off to the hospital to hopefully have staples and catheter removed.

Bit of a panic last night where I had the urge to pee and quite a lot of urine leaked out of my penis, luckily I was on the toilet at the time. Wasn't entirely sure if there was a blockage in the pipe, but it was full of urine so we changed the bag anyway, new one seemed to drain better than the old one (3rd bag in 9 days). Phew!

On the subject of the catheter, when disconnecting the night bag, check that the coupling is still attached to the valve on the leg bag, or you won't be able to connect the next night bag.

User
Posted 18 Nov 2019 at 22:36

Catheter and staples out, (removing the catheter was a weird experience). 

Had to drink plenty of water to test my bladder was working, so drank plenty of water and peed into a container followed by a scan to check bladder had emptied. Did this twice and I was sent on my way.

P.S. one wound has opened slightly but is dry so will check in the morning.

Had two more very painful spasms(same as Wednesday) suspect its my bowels as I haven't had a movement today.

Apart from that, I'm feeling better already!

User
Posted 22 Nov 2019 at 16:49

End of week 2
It is now exactly two weeks since my surgery so here is the latest update/summary:

Once the staples and catheter were removed on day 10, I felt so much more comfortable.
My scrotum is no longer the size of a grapefruit, and my penis seems to have made an appearance after hibernating inside my scrotum.

One of the smaller wounds has opened slightly, but has been packed and dressed twice so far by the nurse.

Since then I have been working on my pelvic floor and bladder control. I'm now dry during the day, but still hit and miss at night (first dry one last night). I am of course fully aware that this is early days so I'm expecting a few setbacks on the way.

Today is the last day of surgical stockings, but I still have several days of Dalteparin left which gives my other half so much pleasure.

Highs:
Catheter removed.. ahhh bliss!
Staples removed... itching stopped.
Stockings binned.
Dry during the day after 24 hours.
Had a very slight semi twice this week.

Lows:
One Wound gapping.. It's healing slowly but not infected.
Had a couple more excruciating spasms.

User
Posted 22 Nov 2019 at 17:59
Interesting - men are usually dry at night first, and then daytime control comes later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Nov 2019 at 12:19

End of week 3
Today is exactly 3 weeks since my RALP surgery.

Feeling really well now and have so much more mobility. Still taking things very easy though, a walk to the shops is enough exercise for now.

The wound that gapped is repacked and dressed every few days by the nurse, who reports that it's now 5mm deep (was 10mm) and with no sign of infection.
The larger one above my navel has a nice thick scab which I'm happy to leave alone. The others are scab free and look great.
On the subject of my navel, I've only just noticed that I have no felling to about two inches below it.

Had the occasional blockage this week when peeing. This usually clears on a second attempt and is heralded by a blob shooting out of my penis (urine colour with a consistency of shower gel?) Any soreness from the catheter has gone but I'm still drinking plenty.
Apart from that, I'm continent, but usually up 3-4 times a night to pee (I've got used to disturbed sleep this year).
Squatting, sneezing, climbing in and out of the car, (and farting) are the tests. So far so good, but it's early days and I know that setbacks can happen.

My penis doesn't do much else, the slightest semi although very welcome, is a rare event (yep very early days I know).

Only 3 weeks to go before I can drive again then after that, my next appointment with the consultant is 24th December.

User
Posted 06 Dec 2019 at 16:55

End of week 4
Today is exactly 4 weeks since my RALP surgery.

Mobility is still improving although I don't feel a huge change over the last few days. (Most of the action is in the first two weeks, while the third is wow I feel great!) This week, however, I just feel flat.

Today marks the end of the Dalteparin anti coagulation injections (not fond of needles so I'm glad to see the back of them).
My scars are healing nicely including the one that gapped which is almost done, but still being dressed by the nurse (no idea where the thick scab from above my navel went).
 
Still getting the occasional blockage when trying to pee, until debris shoots out and I get a good flow again (yes it p***** me off).
Still getting up 3-4 times a night to pee.

Only two more weeks before I can drive again so I'm counting down the days. Woohoo!

Then last but not least, the post-op appointment with my consultant is on the 24th. His letter to my GP including a comment from the pathologist regarding base margin, gives us a heads up of a possible T3a (upgrades seem common if other posts are anything to go by).

User
Posted 06 Dec 2019 at 17:02

Kev

Looks like you’re making steady progress.

Good luck for the meeting on the 24th and may you enjoy feet up a bit with a tipple over the festive period with friends and family.

TG

 

User
Posted 06 Dec 2019 at 17:25

Cheers TG,

We have a bottle of champagne under the stairs that must be at least 20 years old. Hopefully we'll have an excuse to crack it open. If not, it'll be hasta la vista baby, followed by a shrug and a tipple of something anyway.

Kev.

User
Posted 06 Dec 2019 at 18:08
I wish you 100% success with your results. I don’t mean to pee on your parade but champagne isn’t best known for keeping. Best get a new one to avoid disappointment lol. Good luck
 
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