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 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 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 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 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 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 11 Apr 2016 at 20:39

Hi duncanac really good news on psa, my oh had his first psa result 2 weeks ago post op and it really does feel like a weight has been lifted - enjoy crack open the wine or in our case I got the champagne 😊 Paul was on phased return to work did first full last week all good just got weary towards end but to be expected. Getting there slowly ... Take care jx

User

Posted 15 Jul 2016 at 18:31

Evening all

Not posted for a while so I thought I should give you all an update

Got the latest PSA results today....less than 0.1 so we're happy

On the incontinence front, still using a pad a day most days, occasion two, PFEs continuing, Solifenacon 5mg daily, leak more when I'm tired or had a "sherbet" or two, mostly dry at night, being honest I wish I was totally dry but it's work in progress

On the ED front, using the pump daily, Cialis 20mg twice weekly....and we've had some naturally occurring success too, so we're both happy on that front too...

Work wise, I'm piloting compressed hours and a 4 day week (taking Momdays off) which is brilliant....

Duncan

User

Posted 17 Jul 2016 at 17:40

Afternoon Chris

I really notice the difference on Solifenacin, helps control the urges...no side effects that have bothered me at all...and no, they ain't cut the salary, my boss worked it out that if I did 15 mins extra 4 days a week, I could get a day off...shows just how many extra hours I was doing...I have to say they've been very supportive throughout the whole episode...

Duncan

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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

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.

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