New diagnosis - rabbit in headlights - - Page 2Localised cancer

User

Posted 25 Mar 2022 at 08:19

How is OH doing now JayneyP? First couple of days done. Hope he is recovering?

I tried replying to your message but your inbox is full so it won’t let me send it but put this -

Yes it takes a while to settle down. His insides are all over the place at the moment. As long as he is eating and drinking that’s important. He will snooze lots as well. His insides could take up to a long time to heal. It’s not just the 7 holes on the outsides.

Regarding the stockings…here is a tip to help you. You will have to do it for a while as his tummy will be too sore and tight to do it. Get a small plastic bag and put it over his feet before pulling them on. Slide it over and then take the bag off! A tip from a nurse and works a treat 😉

Once the catheter comes out, that will feel so much better for him.

Steve

User

Posted 25 Mar 2022 at 14:58

Hi Steve2812

Have sent you a pm now inbox is cleared. Thanks for tip with the stockings!

User

Posted 25 Mar 2022 at 15:10

Day 3 update

Yesterday was tough! Once he had showered and been to the loo he was shattered so rested. He needed to catch up on sleep too. I keep reminding him we were only day 2 yesterday. He is sleeping ok, although waking early. Eating what he feels like, small light meals - his appetite is reduced, drinking lots. He's got used to the catheter and is managing that well (thank goodness for Instillagel). We have gone from a rose colour to a pale straw 👍 He has found strapping it to his inner thigh is better than lower down his leg - he feels less constricted. Prune juice working its magic along with lactolose and senna 👊. He is doing gentle walks at the mo, up and down the garden and drive. Not ventured far yet. All in all today is a much better day and he is feeling brighter. He has no pain, just the puncture wounds are uncomfortable. Getting the stockings on and off is like a Krypton Factor Challenge - thanks Steve2812 for the tip - will try that. So all in all not too bad at all. His emotions are all over the show which again is to be expected, but I think he is handling it all very well. It's major surgery which cant be underestimated. Catheter out all being well next Thursday (thanks for the tips OhDear) and results in 6 weeks time. One step at a time.

Thanks all for your support, will pop in again and let you know how we are getting on x

User

Posted 27 Mar 2022 at 21:37

I did message you to see how things were going but your in box was full. How are YOU feeling ? My husband said when he was recovering it was all about him and no one asked about me his carer!
Im hoping he is doing okay too.

User

Posted 28 Mar 2022 at 15:25

Feeling tired a number of days/weeks after the surgery is to be expected and I certainly didn't regain my pre-operation energy levels until at least 3 after my surgery. As has been said, your husband has undergone major surgery and the damage on the inside is at least 10 times worse than that seen on the outside. Feeling tired is natures way of telling you to rest and sleeping is when most of the repair work takes place. I am sure your husband will feel better/more confident when he has had the catheter removed though as I mentioned in a private message that is likely to create new problems ( Incontinence for a number of weeks/months). My continence improved from less than 1% straight after the catheter was removed, to around 70% a few hours afterwards to 99.99% within 2 months.

Onwards and upwards to infinity as was once said

Ivan

User

Posted 28 Mar 2022 at 18:49

Hi all

Thanks for your support. Yesterday was good but today not so good. The catheter is making him so sore despite the instillagel and OH believes there may be a bit of discharge from penis so our amazing GP has prescribed antibox which I collected before pharmacy closed. Better to be safe than sorry eh? Wounds healing nicely, just a bit tender but not painful. Sleeping when he needs to. Let’s hope the catheter can come out on Thursday 🤞

User

Posted 28 Mar 2022 at 18:53

thanks Ivan. I think he is doing amazingly well, but I am his biggest fan. It’s been a bumpy ride at times, as we knew it would be. It’s major surgery so each day (or hour) can be different. Once the catheter is removed as you say he will have new challenges. onwards and upwards 🤞

Originally Posted by: Online Community Member

Onwards and upwards to infinity as was once said

Ivan

User

Posted 28 Mar 2022 at 18:56

thank you I have sent you a pm.

Originally Posted by: Online Community Member

User

Posted 28 Mar 2022 at 18:58

thank you, sent you a pm.

Originally Posted by: Online Community Member

User

Posted 28 Mar 2022 at 19:29

Interestingly enough, the catheter only started making my "tip" sore after a couple of days of having the catheter in and I found that letting the tubing just dangle down (no underwear and my modesty covered with a long dressing gown) and using a fair bit of instillagel ensured that I was not bothered with that sore "tip" feeling. You (or your husband or both of you!) needs to ensure that the gel is pushed into the hole. Instantaneous relief is then guaranteed.

I think you will find that once the catheter is removed, notwithstanding the fresh challenges that will bring, your husband will feel better within himself.

All the best for Thursday (cough, cough out!)

Ivan

User

Posted 28 Mar 2022 at 21:06

thanks Ivan, yes he’s looking forward to getting rid. Keep you posted x

Originally Posted by: Online Community Member

I think you will find that once the catheter is removed, notwithstanding the fresh challenges that will bring, your husband will feel better within himself.

All the best for Thursday (cough, cough out!)

Ivan

User

Posted 31 Mar 2022 at 18:45

Catheter is out, OH is relieved, so now we are in true recovery mode. Today feels like we’re over another hurdle and we’re both looking forward to sleeping better. Results and first PSA early May. Onwards and upwards 🤞

User

Posted 31 Mar 2022 at 18:50

That is great news and now that the catheter is out your husband can start feeling "normal" again. Pulled out on second cough?

Ivan

User

Posted 31 Mar 2022 at 19:00

Great news - hopefully your husband will enjoy regaining some mobility and will be able to get some light walking to help recovery. I hope he is relatively dry but do not despair if not, I think most men are at least a little incontinent to begin with but improve over time. I seem to have been really fortunate, 1 week since catheter removed and no damp patches so far. regards GG

Edited by member 31 Mar 2022 at 19:01 | Reason: Typo

User

Posted 31 Mar 2022 at 19:50

Originally Posted by: Online Community Member

That is great news and now that the catheter is out your husband can start feeling "normal" again. Pulled out on second cough?

Ivan

🤣🤣🤣 you know the drill Ivan! What a great team they are.

User

Posted 31 Mar 2022 at 19:56

Originally Posted by: Online Community Member

That’s great news GG. He was feeling restricted with the catheter in and a UTI too. He’s looking forward to some light walking and working on the continence. Thank you for your message x

User

Posted 31 Mar 2022 at 22:24

Think it was about 10 weeks before I was fully continent although was never a major issue. I'm now 2 years on from my operation and lfe in all respects is back to normal. Have a look at my profile if you would like to know more. Good luck

User

Posted 01 Apr 2022 at 13:24

Originally Posted by: Online Community Member

thanks Mikew we can live in hope 🤞

User

Posted 01 Apr 2022 at 17:26

As you all said, the first 7-10 days is the hardest. You were right! Physically, mentally and emotionally draining. Today, minus the catheter is a different story. We both got more sleep too 😀. Slowly slowly and all that. Wounds healing well, squeezy app prompting pelvic floor exercises, a gentle walk, and an afternoon nap (him not me!). This time last week was a whole lot different x

User

Posted 01 Apr 2022 at 17:45

Once the catheter is out you do feel you have started a new chapter and are moving forward.

Re incontinence, mine improved to about 70% continent after the first day and then took a number of weeks to improve further. Walking certainly made me leak quite a bit. I wore the incontinence pants for the first month ( though could have got away with wearing the pads) and then reverted to wearing the pads. My continence slowly improved after about 4 weeks and then incrementally seemed to improve daily to where I am today: 99.99% continent with leaks only occurring when I lift something really heavy.

Ivan

User

Posted 01 Apr 2022 at 19:36

Originally Posted by: Online Community Member

Once the catheter is out you do feel you have started a new chapter and are moving forward.

Ivan

thanks Ivan, really useful to know. Only short walks currently and no leakage and a dry night, so let’s see how we get on in the next week or so. We’re under no illusion, it’s going to take time. He just feels so much better in himself. Wishing you well.

User

Posted 12 Apr 2022 at 20:39

Just popping in to update..... 3 weeks post surgery today. All going well. Continence has been good since catheter was removed. Wearing a level 1 or 2 pad just in case. Small leakage on Saturday eve. Just a reminder that muscles can get tired and it’s early days! He drove for the first time yesterday and all good. Wounds healing nicely, stitches not dissolved yet. He still feels slightly bloated and tummy swollen but definitely going down.

No real curveballs post catheter removal apart from the severe side effects to the taladafill which he stopped and will re-start next week on half dose (2.5mg). Let’s hope he can tolerate 🤞

So he is concentrating on recovery, increasing the walking distances and resting. Religiously doing his pelvic floor exercises (squeezy app is good). So far so good. Next big hurdle is result day on 5th May. It’s little steps and finding out what his limitations are without doing too much and going backwards.

User

Posted 13 Apr 2022 at 07:23

Good to hear Jayney and that is "only" 3 weeks after surgery.

Onwards and upwards

Ivan

User

Posted 13 Apr 2022 at 12:48

Originally Posted by: Online Community Member

Good to hear Jayney and that is "only" 3 weeks after surgery.

Onwards and upwards

Ivan

Thanks Ivan, onwards and upwards. Hope your recovery is going well. X

User

Posted 13 Apr 2022 at 14:17

Yes Tadalafil can cause side effects. I switched to half dose and that was much better. Also, I found the body adapts, so after a few days the effects were much less.

User

Posted 13 Apr 2022 at 14:25

Good to hear JaneyP. Your OH and I are on a similar schedule. I too remain almost completely dry ( trying to retrain my bladder and had one slight leak when I held on for just too long ), wounds have healed well and no significant pain, I am walking regularly and able to drive short distances. I still suffer tiredness / fatigue though so am listening to my body and not rushing back to work yet. My results date is May 6th so got a PSA test booked ahead of that.

hopefully our respective stories can encourage others who are considering surgery.

regards, GG

User

Posted 14 Apr 2022 at 21:16

Originally Posted by: Online Community Member

Yes Tadalafil can cause side effects. I switched to half dose and that was much better. Also, I found the body adapts, so after a few days the effects were much less.

thanks that’s useful to know. He’s due to restart on Tuesday x

User

Posted 14 Apr 2022 at 21:21

Originally Posted by: Online Community Member

hopefully our respective stories can encourage others who are considering surgery.

regards, GG

so good to hear GG. Yes OH knows when he needs a siesta! Don’t rush back if you don’t need to and undo all your good work. Listening to your body is definitely the best theory. Keep doing what your doing. So far so good..... we’re hoping for a good outcome on 5th May 🤞 he has his PSA booked for 3rd 🤞 wishing you well x

User

Posted 17 Apr 2022 at 22:46

Glad to hear the operation went well. Been away on holiday to Portugal otherwise I would have posted earlier. Anyway, I hope your other half’s rehabilitation also goes smooth;y.

Regards Marvin

User

Posted 18 Apr 2022 at 22:56

Thank you, so far so good. Great to hear you managed to get away too. Have you decided which route to go? X

User

Posted 25 Apr 2022 at 20:14

5 weeks tomorrow since surgery. Recovery going well. Healing nicely. Wound where they removed the prostate has not completely healed. The top 0.5mm still has to close. He’s still quite swollen which I assume is internal bruising etc. He’s Still feeling quite tired and just trying to figure out what he can and can’t do. He has been despondent regarding his energy levels, so had to remind him (again) it’s early days!!! Afternoon siestas are a must. Still taking it easy (no golf yet). We managed a few days away which was great and a change of scenery with lovely weather. Taladafill re-started last Tuesday on half dose with no side effects so far. Continence is good, just the odd dribble especially later in the evening when muscles are tired or after a glass of red wine 🍷 however, the last 2 days he’s been completely dry. He was 95% continent when catheter removed. However, no really long walks yet so this may well regress. He is religiously doing the exercises via the app. Anxiety is starting to build over test results next week (5th May). What will be, will be but we are desperately hoping for good news. 🤞wishing you all well x

User

Posted 25 Apr 2022 at 21:40

Hi JaneyP, I am glad your OH is making good progress. I am sure he will soon regain energy and fitness.
Your post prompted me to update on my own journey and like you I am beginning to think about the pathology outcomes.
All the best for the 5th, I will be thinking of you both.

regards, GG

User

Posted 26 Apr 2022 at 08:44

It took me around 8 weeks to regain my pre-surgery energy levels and before I did I was going to bed quite early (9 pm). Before the surgery I was something of a night hawk, going to bed around midnight or later. Re the wounds, 4 months on the only visible wound remaining is the long slit above my belly button which was used to remove my prostate. That wound is getting lighter and lighter in colour as the weeks go by and will, hopefully, be much less visible ( not that I intend to sunbathe topless) as the months progress. Re having a swollen stomach, mine was like that for at least 2 months but is now back to how it once was.

All the best for your post-operative test results next week.

Ivan

User

Posted 26 Apr 2022 at 23:25

Originally Posted by: Online Community Member

regards, GG

thank you GG. Just replied To your post. X

User

Posted 26 Apr 2022 at 23:27

Originally Posted by: Online Community Member

All the best for your post-operative test results next week.

Ivan

thanks Ivan, it’s always good to know these things and compare notes, he has a way to go then in terms of swelling etc. Today he walked over 3 miles which was the furthest so he’s pleased with himself. Will keep you updated x

User

Posted 27 Apr 2022 at 15:07

Hi Jayney,

Pleased your OH is doing so well. Took me more than 5 months to achieve his level of continence, but I did have a bladder neck reconstruction. Just a note to say that, at my 6 week consultation, I proudly told my surgeon that I was walking a total of about 3 miles each day. and received a ticking off with a warning that it was too much at such an early stage and to build up gradually. He reminded me about the major surgery and that the visible external wounds healed much faster than the internal wounds.

It may be horses for courses so, just a note.

Peter

User

Posted 28 Apr 2022 at 22:03

Originally Posted by: Online Community Member

Hi Jayney,
Pleased your OH is doing so well. Took me more than 5 months to achieve his level of continence, but I did have a bladder neck reconstruction. Just a note to say that, at my 6 week consultation, I proudly told my surgeon that I was walking a total of about 3 miles each day. and received a ticking off with a warning that it was too much at such an early stage and to build up gradually. He reminded me about the major surgery and that the visible external wounds healed much faster than the internal wounds.
It may be horses for courses so, just a note.
Peter

thank you for your advice. Yes I was a bit concerned when he said he had walked so far. He generally does around an hour a day sometimes less, but because he felt good and was walking around the golf course he went further. He still has to have the afternoon naps which is a sure sign the body is still healing. As you say it should be a gradual build up. So far so good, just waiting on the results now. Wishing you well x

User

Posted 04 May 2022 at 21:22

Hi JayneyP,

wishing you and your OH all the best for tomorrow - it’s an important milestone and I can envisage the emotions you are feeling. I am hoping and praying that you receive good news from post op pathology.

best wishes, GG

User

Posted 04 May 2022 at 21:31

good luck for tomorrow all the best gaz 👍

User

Posted 04 May 2022 at 21:44

Originally Posted by: Online Community Member

Hi JayneyP,

best wishes, GG

thank you GG, the anxiety is unreal. I’m bring as positive as I can be and hope we get some sleep. 🤞

User

Posted 04 May 2022 at 21:45

Originally Posted by: Online Community Member

good luck for tomorrow all the best gaz 👍

thanks gaz, and thanks for thinking of us. Just trying to be as positive as I can be. 🤞

User

Posted 05 May 2022 at 13:09

Results are in and it’s good news!

Clear margins

No node involvement

Gleason remained at 7 and grade remains too.

PSA was 0.04 and next test will be 3 months time.

The left hand tumour was pressing against the outer edge and whilst it hadn’t broken through, within the year it would have been a very different story.

Honestly the relief. Thank you all for all your help and support. I’m so glad I plucked up the courage to post on the forum. Wishing you all well x

User

Posted 08 May 2022 at 14:54

Jayne P

Sorry for delay in replying. Not very good with this forum. Anyway, I have decided to go down the Hormone Therapy route and radiotherapy. I have been on hormone therapy since the end of February and my bloods are being taken 0n 26 May 2022 so hopefully PSA down to acceptable level if so onto radiotherapy. The specialist nurse has confirmed that will be 20 doses hopefully starting early July Monday to Friday for 4 weeks.

I hope your husband has recovered well which I will no doubt read about in your thread further down.

‘Anyway, both of you take care and speak soon.

Regards Marvin

User

Posted 08 May 2022 at 15:09

Great to hear your news. Should have read down the other posts before my last post. Onwards and upwards for you both!!

Regards Marvin

User

Posted 10 May 2022 at 13:52

Originally Posted by: Online Community Member

Jayne P

I hope your husband has recovered well which I will no doubt read about in your thread further down.

‘Anyway, both of you take care and speak soon.

Regards Marvin

Hope the PSA is coming down nicely when you have your test on 26th and you’re not having any major issues with the ht treatment and subsequent rt. wishing you well and please keep us updated x

User

Posted 14 Jun 2022 at 21:44

*12 week update *

OH is 12 weeks post op today. Not sure where the time has gone. The brain is great at blocking out the not so good stuff! Continence is good 👍 which is a huge relief. He uses a thin guard to catch any dribbles when he’s playing golf but more a confidence thing. Zero erections, not even a tingle in the underpant region 😞 He’s taking 2.5mg taladafill daily which I don’t believe is beneficial as it’s such a low dose. He couldn’t tolerate 5mg. Will discuss this at next appt. Waiting on penile pump (although he really isn’t interested). Still quite a bit of swelling that has to go down around his abdomen despite being 3 months post op. Wound still not fully closed - 0.5cm at top. still dressing that every other day, despite 2x course of antibox 😬 I’m keeping a close eye on it. Second PSA beginning of August and the anxiety is just starting to eat away at me. I keep pushing it to back of my mind. I can’t change the results but doesn’t stop me worrying!

Can’t quite believe we are where we are. It’s an ordeal that’s for sure. Onwards and upwards 🤞

User

Posted 14 Jun 2022 at 22:45

12 weeks, wow that seems to have flown by….although maybe not for you 🤦🏻‍♀️

He’s doing so well, just hope that wound heals fully very soon.

I’d say don’t let the PSA anxiety get to you too much, but ours is august aswell and I’m already starting to feel it a bit too 🤦🏻‍♀️ I sometimes wonder whether that feeling will ever go away. I’m sure everything will be fine though 🤞🏼

Hopefully he will have some success using the pump aswell. It’s just a rehabilitation tool for us at the moment….when he can be bothered 🙄😂

Onwards and upwards as you say, I’m sure it will just keep getting better from here.

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