The ball is now rolling...

User

Posted 01 Sep 2015 at 10:08

Morning all

After a good long chat with the CSNs, we've decided to go down the surgery route. This was our second choice, brachytherapy was our first but after seeing the oncologist last week it became clear that I would still need some surgery even if I opted for Brachytherapy due to "flow issues" and the brachytherapy would just exacerbate the current symptoms.

Active surveillance was third choice, but we felt that the regular tests, the anxiety caused by waiting on the results and then interpreting them would have driven both of us insane...:-). EBRT wasn't considered as a serious option by either of us....we were going to wait a few weeks before finalising the decision but after a number of long chats with the nurses, family and friends (including a couple who are further down the PCa route than we are) we realised that we'd already decided what we wanted to do so here we go....

So, now I'm on the waiting list, 6-8 weeks. I think we're now in the suburbs of the town called acceptance, and the sat-nav is working ok, although we know that we'll get some duff directions and dead ends before we get to the city centre.

Now to start the list of things I need to do & buy...any recommendations appreciated

Duncan (& Chris)

User

Posted 01 Sep 2015 at 11:18

Good luck Duncan &Chris

My OH was able to opt for Brachytherapy, making the choice is probably one of the hardest decisions.

Maureen

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

User

Posted 01 Sep 2015 at 12:07

Well done. You've thought it all through properly and had all the talks , but it's still so difficult.
All our wishes and hope the wait isn't too long
Chris and El

User

Posted 01 Sep 2015 at 14:36

If you aren't already Duncan, then start the pelvic floor exercises.

You can apply on site (in publications) for a surgery pack which comes in a little bag with some samples of pads, wet wipes and disposal bags.

Good luck with the op.

Have edited to say the pack appears to no longer be available through publications but I think if you ring the Specialist Nurses on 0800 074 8383 you can still ask for one.

The pack was very handy to have

Edited by member 01 Sep 2015 at 17:07 | Reason: Not specified

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

User

Posted 01 Sep 2015 at 19:26

Hi Duncan ask if you can get free pads in your area as some you can , you will need them after catheter is removed , some loose fitting bottoms to fit leg bag under for your journey home , hope your op goes well .Andy

User

Posted 02 Sep 2015 at 21:09

Search conversations for "Moving swiftly on" that was a recent post on pre op tips.

You can put "prostate cancer uk moving swiftly on " into google and get the post.

There was another good one about a year ago but cannot remember who started it but someone will.

Can someone tell me how to copy a "conversation link"

Thanks Chris

User

Posted 06 Sep 2015 at 08:59

Morning all and many thanks for the hints and tips...the shopping has started in earnest

Reality check as my pre-op assessment is this Thursday...gulp!!!

User

Posted 06 Sep 2015 at 10:10

Hi Duncan . It will be a breeze if not boring ! Having said that I ended up walking out of the hospital waving my arms in the air ranting , and the Urologist that came down agreeing I wasn't mentally sound enough to have it done - non consenting . And they were right tbh . But after a day of " THE LOOK " from my wife , prostate nurse ringing me and even the surgeon calling me from his home on the Sunday , I agreed . WHAT a drama queen haha . Lets hope youre a cooler cookie than me .
Very best
Chris

User

Posted 06 Oct 2015 at 10:46

Quick update 6th October...the ball has stopped rolling in that I'm still waiting on a date for the surgery, just rung the waiting list office again to be told nothing doing....this waiting is a little trying on the nerves.....also finding it difficult to plan anything....so another week flies by....

User

Posted 06 Oct 2015 at 11:56

Hi Duncan

Wishing you all the best with the RP. Just wondering why you didn't consider ERBT as a serious treatment option. I too am T2c and did go with the ERBT (5th session today).

Regards Colin

User

Posted 06 Oct 2015 at 12:21

Hope the waiting ends soon for you. It's often the worst bit yeh. I think every step becomes a waiting game. Even people with minimal PSA readings are spending their lives waiting 6 mnths for the next one. Poor souls. It's the nature of the beast I suppose. Good luck
Chris

User

Posted 06 Oct 2015 at 12:47

Colin - a good question re EBRT and like everyone on here, we (and by we I mean SWMBO & myself) really did go back and forth trying to make the decision, knowing full well that we'd probably spend some time wishing we'd done something else...I would have had to have surgery to address the issue that I originally went to the GP about anyhow but I think the real nub of the decision came down to personalities, the surgeon was very positive and really encouraged us to look at all the alternatives not just his specialty, whilst the Oncologist didn't "excite" us ...we felt the surgeon talked to us as people (I'm probably doing the oncologist a dis-service here too)...so like so many things in life a decision not based on facts but gut feel...and apart from the delay I'm still comfortable with the decision...famous last words !

Chris - it really is a case of hurry up & wait....probably just my opinion but they need to treat the mental as well as the physical aspects of the disease. At least my GP wants to keep in regular contact so I'll see is he can find anything ouyt

Duncan

User

Posted 06 Oct 2015 at 13:18

Duncan

Thanks for the reply to EBRT.

I must say I was very comfortable with both the surgeon & onco, but as you say the final say is with the individual.

Hope your date is through soon.

Best of luck
Colin

User

Posted 21 Oct 2015 at 14:19

OK folks, so I've got the date of my impending appointment with the surgeon's knife...3rd November...GULP, awfully real now....so where are we with our preperation

Catheter night stand - ordered yesterday, check
Baggy clothes - check
Y-fronts (rather than boxers) - check
Ducolax - check
Imodium - check
Paracetamols - check
Co-codamols - check (although I will get some dis-solvable ones)
Peppermint tea - check (don't like it though)
Waterproof mattress cover - check (although we need to get a second one)
Supply of pads - CSN not sure if I'l get a supply so I may need to order some (I have a supply of Tena 1 already)
Cranberry juice - check
Pomegranate juice - check (don't like it though)
PFE's - honestly? Doing them morning and night (usually when I have a toothbrush in my hand) but totally forget about the mid-day one ...

Once more unto the breach dear friends....

User

Posted 21 Oct 2015 at 14:42

Hi Duncan, the beat of luck mate, I have my appointment next week so will not be far behind you. One thing, how long did you wait from agreeing surgery to actual surgery date. I like your check list, will use tgat myself. What's PFES and keep in touch and let us know how you are getting on. sandy.

User

Posted 21 Oct 2015 at 15:34

Afternoon Sandy

PFE - Pelvic Floor Exercises, I know some people haven't done them or been told that they don't add any value, but I'm a little OCD at times and if I've been told to do them by the physio, I'm going to do them...

Timescales - we made the decision on Monday 31st August and told the CSN the same day, she started the ball rolling and I got my letter saying I'd been added to the surgical waiting list on the 4th September...I only got the date this week so the waiting was a little trying on the nerves....

As to the checklist, I borrowed a lot of it from Dick.B's thread Moving Swiftly On....a great source of info & humour...

Duncan

User

Posted 21 Oct 2015 at 16:48

Thanks Duncan,

I know how you feel about the wait, seems so long between visits etc. I was hoping to have had the surgery before xmas myself but at this rate I don't think this will happen.

Need to wait and see what specialist says next week but I am the same as you, going to opt for surgery to remove if possible.

I will have a look at Dick B's posts for some tips etc.

Sandy.

User

Posted 05 Nov 2015 at 20:51

Just back home after LRP, now the "fun" really starts, very sore and a little frightened at the enormity of what ve started but there's no going back now....night bag connected, fingers crossed for a reasonable nights sleep....

User

Posted 05 Nov 2015 at 21:05

Good luck Duncan.
Hope you get a good night's sleep with no major problems

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

User

Posted 05 Nov 2015 at 21:09

Hi Duncan,

Re the night bag and stand if you have a bowl or a,large enough bucket it may be ab ides to stand it in that, just in case you turn over and pull it over. It should not leak, but you never know?

You will probably get used to sleeping in the one position that you are able to without any tugging.

You have probably been told but always wash down the tube when you shower to minimise the risk of infection.

The hardest bits, what to do and then having it done, are now over. I wish you well in your recovery.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Nov 2015 at 21:22

Well done Duncan
I wish you as much sleep as you can get. It really helps. I never had a stand even in hospital. Just dumped the bag in a cardboard bed-pan they did.
All the best for a speedy recovery
Chris

User

Posted 05 Nov 2015 at 22:43

Number one, no straining to pass that first motion.

I bought the OH some rubber gloves so she did not get urine on her hands when connecting and disconnecting my night bag. I also use a thigh/catheter strap round my ankle and connect the night bag tube to it, then if you are a restless sleeper less chance of some thing coming undone.

Have you got a spare thigh strap,if so shower with the strap on tuck the tap under the strap change to a dry strap when you get out the shower let the wet one dry ready for next day.

By passing can be a bit uncomfortable i.e. urine leaking between the catheter and urethra, normally when sat on the loo, use a few sheets of loo roll under the end of the penis to pick up any leakage.

Take it easy but keep mobile, all the best.

Thanks Chris

User

Posted 05 Nov 2015 at 22:51

Originally Posted by: Online Community Member

I bought the OH some rubber gloves so she did not get urine on her hands when connecting and disconnecting my night bag.

Most women appreciate flowers or chocolates

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

User

Posted 05 Nov 2015 at 23:28

Lyn you are being very impish today!!

Duncan

Great news and I wish you all the best for a speedy recovery.

User

Posted 06 Nov 2015 at 06:47

Originally Posted by: Online Community Member

I bought the OH some rubber gloves so she did not get urine on her hands when connecting and disconnecting my night bag.

Most women appreciate flowers or chocolates

Buy her Marigolds. Flowers/Gloves - combined. Sorted!

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 06 Nov 2015 at 08:35

Good luck Duncan
Wishing you a speedy recovery

User

Posted 06 Nov 2015 at 13:44

Wishing you well. I found those couple ow weeks with the catheter in situ were not too pleasant. It did tend to have an impact on my mobility. Take it easy and listen to you body. I thought I was reasonably fit but it took it out of me in the early days. Hope all goes well. As stated earlies opening your bowels without straining is a challenge. I needed a visit from the doctor and a prescription for movicol. I found sitting on the toilet with my legs raised up in front of me on a small stool helped reduce overflow.

Take care.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 13 Nov 2015 at 10:29

Morning all

Quick update now I've been home a week.....sleeping is still an issue, just can't get comfortable (sleeping in one position isn't the issue as I'm used to that from my sailing days), lots of wind which doesn't help (2 cups daily of peppermint tea), movements are "interesting" resulting in quite a bit of catheter bypass, daytime telly is appalling, taking things very easy with gentle walks when the weather allows...

The district nurse was out on Tuesday, took a sample to make sure there's no infections (all clear) and I'll be doing another sample on Monday as that's her biggest concern....

Roll on the 19th when I get the catheter out fingers crossed, awaiting the date for my appointment with the consultant for the results....

Onwards....

User

Posted 13 Nov 2015 at 10:41

Hi Duncan
You're doing really well . I was "lucky" in that I was in hospital the whole time the catheter was in , so I didn't really have to manage like you with a normal life . It gets so much better . Best wishes for 19th
Chris

User

Posted 13 Nov 2015 at 10:42

Hi Duncan

Good to hear that you are on your feet and going for walks, albeit with our weather that won't be very far.

Good luck with results etc.

Sandy.

User

Posted 13 Nov 2015 at 15:05

Duncan

I think of lot of people find it hard to get comfy with a catheter fitted. also you are doing a lot less activity than pre op (well you certainly should be) so you are probably not as tired as usual. I never watch daytime TV I opt for the radio instead if I am at home.

Sounds like your district nurse is on the ball and checking up on you. Hopefully as soon as the catheter is out you will start to feel like you are really on the road to recovery. Dont expect too much day one, make sure you have a reasonable supply of pads (mixed sizes) change them reasonably regularly and keep everything really clean.

The wind is residual from being inflated for the operation it can take a week or so to dispel it all.

As for pooping however desperate you feel, do not strain too hard, a tip to mmake things easier is to put a small foot stool or even a small box just in front of the loo and put your feet up on that when you want to try and go. It takes a lot of the pressure of your back passage and makes it much easier to go. Even post removal of the catheter you will probaby find any action in that area will cause an unstoppable escape of urine as well. The sphincter muscle is what controls both activities and it takes a while for it to learn how to do one without the other again.

all the very best

User

Posted 13 Nov 2015 at 15:35

Hi Duncan

Having been where you are now I know exactly how you are feeling. I had the catheter in for 10 days post surgery and it certainly is a challenge and so is doing a number 2! However, this time next week it should be out.

I can give you one bit of advice - when you go for the trial without catheter make sure you wear tighter fitting underwear rather than boxers as they will hold a pad in better. I didn't think and wore loose boxers. The pad got heavy quickly and kept falling down my trouser leg. Embarrassing at the time in front of others in the waiting room but I laugh about it now!

Wishing you all the best.

User

Posted 19 Nov 2015 at 15:22

Update 19/11 - the good news is that the catheter is out (quite a un-nerving experience), the bad news (as expected) is that I'm now in free-flow until I get to grips with things again....

The other bad new (or good news in a reverse logic sort of way) is that my follow-up with the surgeon is likely to be in January, not mid December as previously advised....time to start phoning secretaries me thinks...

Right, away to start my PFEs...

User

Posted 19 Nov 2015 at 15:31

Best of luck with the recovery Duncan . I hope the PFE's do the trick. I think it seems to be luck of the draw whether you are dry or not when the catheter comes out . I saw my surgeon yesterday and he's been doing a new thing during surgery and said he's had an amazing summer for continence success.
Maybe no news is good news before Christmas. As you've probably noticed this journey seems to just go on and on and on .......
Best wishes
Chris

User

Posted 19 Nov 2015 at 18:37

Hi Duncan

Good news with the catheter removal, you will just need to carry out your PFEs and hope it recovers quickly.

Keep posting as I would be interested with your progress as I am about to start the same journey with op now set for 7th December.

Sandy

User

Posted 26 Nov 2015 at 16:59

Update 26/11 - one week since the catheter was removed, PFEs continuing, started at 3-4 pads a day, was down to 2, but today is back up to 3, fairly dry overnight but involves a couple of trips

Started on Cialis on Monday (20mg twice weekly), had some side effects yesterday and today (head fog and aching muscles) but coping with pain killers....really tired today so that won't be helping with the constant leaking...

The district nurse was out on Monday and she's ordered some different male shaped pads rather than the generic surf boards I'm currently using...

User

Posted 26 Nov 2015 at 17:24

Originally Posted by: Online Community Member

Update 26/11 - one week since the catheter was removed, PFEs continuing, started at 3-4 pads a day, was down to 2, but today is back up to 3, fairly dry overnight but involves a couple of trips

The district nurse was out on Monday and she's ordered some different male shaped pads rather than the generic surf boards I'm currently using...

Sounds to me like you are doing pretty good Duncan!.... you will get fluctuations on your pad usage depending on a number of factors....but to be on just 2 or 3 pads a day at just 1 week post catheter removal I would say the indications are that you will will achieve full continence sooner rather than later hopefully.

Cialis gave me headaches and 'flu like' symptoms also...but I found that after regular use the symptoms subsided for me.....

Blimey! You are lucky to get help with pads... I have to buy my own still.........I've had bugger all help, and certainly no visit from a nurse!..... not even any communication with or from my GP since my op 17 months ago.......

Best wishes for a speedy recovery
Luther

User

Posted 27 Nov 2015 at 12:18

I saw a continence nurse who told me beer, tea and fruit juice would all irritate my bladder so I cut out the fruit juice.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 27 Nov 2015 at 12:34

Great choice Paul.

Sandy

User

Posted 03 Dec 2015 at 15:04

Update 03/12 - 2 weeks from catheter removal and 4 weeks since the operation

Well, the pads arrived yesterday (just a trial amount but I think I'll ask for some more as they're very comfortable compared with the generic surfboards)...I'm also signed up to the Continence Care Service so they'll be able to supply pads going forward once the trial has finished (sorry Luther)....I fluctuate between 2 & 3 pads daily (do you count the overnight pad as this is what I have been doing so that's 2-3 pads over a 24hr period?), PFEs continuing, fairly dry overnight but 2-3 visits, quite dry in the morning but def leak more in the afternoon and evening as I get more tired.

Slowly getting to grips with the side effects from the Cialis (headaches are worse than the muscle pain now), but I'm pleased to report that things are moving in the right direction even if not sufficient for proper "fun"....but it def brought a smile to our faces....

Still finding not sleeping too well, I'll try a glass or two of wine tomorrow evening to see if that helps ...here's to another week

User

Posted 03 Dec 2015 at 15:23

if you are into PFEs and have an android phone there is a good free app called prostate aerobics, you can set reminders and use the visual or audio prompts to assist with the contractions etc. it is available for IPhone but it is 73 pence.

Pleased to see you arte making a good recovery.

Thanks Chris

User

Posted 03 Dec 2015 at 15:49

Thanks for the encouragement Chris as sometimes it doesn't feel like much progress from this side....l'll check out the app as it sounds interesting...

User

Posted 10 Dec 2015 at 16:51

Update 10/12 - 3 weeks from catheter removal and 5 weeks since the operation

Seem to be managing with 2 pads over a 24hr period, with the odd extra if I'm caught short or if it's particularly cold when I'm walking the dog. The Continence Care Service are arranging for a couple of months supply of the pads to be delivered as they seem to be significantly more comfortable than those issued by the hospital. PFEs continuing, if I look back over a week, I don't feel like there's been much progress but if I look back over 2-3 weeks, I can see I am progressing, you just need to take a longer term look at things.

The side effects of Cialis continue to become more manageable but still evident. Not enough for full penetration (where else would you discuss things like this with people you've never met? But it's so easy on here, isn't it?), but definitely more than horizontal...so we're pleased with the progress so far...

No date yet for my follow-up despite chasing, which is a little frustrating

User

Posted 10 Dec 2015 at 17:13

Glad things seem to be going in the right direction for you (no pun intended)

I know what you mean about the discussions on personal things. I would never have dreamt that I would be on a website having those talks with men I do not know (not that I have them with those men I DO know you understand !)

I don't tell John what we talk about I think he would be shocked so best not to tell him. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Edited by member 10 Dec 2015 at 17:15 | Reason: Not specified

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

User

Posted 10 Dec 2015 at 17:21

Five weeks ?? Erections ! Hope you bought the surgeon a bottle of wine cos believe me he deserves one.
Glad to hear things are continuing well for you
Chris

User

Posted 10 Dec 2015 at 19:29

Well done Duncan! It looks like you are going to make a good recovery in all areas - I am really pleased for you.

Wishing you all the best.

User

Posted 17 Dec 2015 at 15:24

Update 17/12 - 4 weeks from catheter removal and 6 weeks since the operation

Lesson for this week has been not to compare my recovery to that experienced by others, what is normal for me is definitely not normal for someone else, however frustrating it maybe when I read of others being dry from day one...and I have to remember that I may be in a better place than others....

Seem to be managing with 2 pads over a 24hr period, but I have had a couple of really bad days including one where I needed 5 pads...not a great day at all. mainly dry at night but I usually have a couple of trips, however I have had 2 nights this week with no interruptions which is progress. PFEs continuing.

The side effects of Cialis continue to become more manageable with headaches disappearing within 24hrs of taking the tablet. Still not enough for full penetration but we're pleased with the progress so far...

Still no date yet for my follow-up despite chasing, which is more than a little frustrating....

On the brigher side, been into work this week to catch up with folks (quite tiring actually but the change of scene was good), and heading out for lunch tomorrow for Christmas lunch with some of the guys...

User

Posted 17 Dec 2015 at 15:59

Enjoy your lunch and friends.
Sorry the continence not too gud but the ED sounds very rapid progress indeed. It's not easy is it , whatever you are left with ?!
Best wishes for Xmas
Chris

User

Posted 17 Dec 2015 at 19:09

Hi Duncan

Good to see you are fairing well.

Funny how different parts of the country operate, I had surgery a week past Monday and have a date of 16th Feb for follow up.

Stiches removed this morning but still have 1 drain bag fitted due to excess liquid in pelvic area hopefully will be removed next Tuesday

just need a date now for catheter removal.

Enjoy your night out.

Cheers.

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