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Well,I,ve been diagnosed today..

User
Posted 10 Apr 2015 at 07:30

morning all
awaiting date for MRI scan and bone scan, but finding the advice and treatment taken on hear good, started to make my first list because of it.

As a family we have been talking of options but realise until scan results are known its a waiting game.

Now I am a very keen runner dont drink dont smoke,whose running is his life doing london marathon end of april.

Also a running coach, now one of my runners when he joined totally unfit, told me from the start he was having PC treatment this was in 2012, unable to run 400yds, he had RT and has told me all about what he went through.

now we will never know if it was keeping running that helped but he said when he was going in for treatment nearly most of the men where in wheelchairs, obviously I do not know how bad their problems where,but he always managed to walk in.

He is still running.

Might sound stupid to you but life and not being able to run is not good in my book.

Am hoping today brings the letter for my scan dates
Its now time to get changed and hit the road one 15mile run todo then time to taper down for the 26th April

run long and prosper


run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 10 Apr 2015 at 07:54

Originally Posted by: Online Community Member

now we will never know if it was keeping running that helped but he said when he was going in for treatment nearly most of the men where in wheelchairs, obviously I do not know how bad their problems where,but he always managed to walk in.

He is still running.

Might sound stupid to you but life and not being able to run is not good in my book.

Am hoping today brings the letter for my scan dates
Its now time to get changed and hit the road one 15mile run todo then time to taper down for the 26th April

run long and prosper

Doesn't sounds stupid at all, totally understandable in my book BR.  I feel the same way about the gym and the treadmill. Keeping some control and fitness anything that makes you feel better and empowered has got to be a good thing overall.

Here's hoping you your letter and some early dates for your scan. And good on you for coaching that man.

atb

dave

User
Posted 10 Apr 2015 at 10:52
Having had my RP last week I can still remember how there is a feeling of being in limbo during the period between diagnosis and having the feedback from the scans. Once you get those you will have the choices to make which is again a difficult time. Once I had made the decision for surgery there was nothing more than to wait. All in all it was around 4 months from biopsy to surgery.

Wishing you well with your journey. If it was a marathon your probably about 4 miles in.

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 10 Apr 2015 at 11:41

Hi BR,
for John it was rugby, cycling and the gym - he had to take a break for a short while after his surgery but never missed a game or gym session throughout his RT/HT. As you intimate, being fit probably helps to offset some of the side effects.

Check out Alathays on here who continued to play rugby for years after being diagnosed with advanced PCa which had spread to his bones.

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

User
Posted 11 Apr 2015 at 14:15

afternoon all

its good to hear my running days may continue

just got my appointment for a CAT scan next thursday 16th in Doncaster

with a bit of luck will know results before the London Marathon on 26th April

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 11 Apr 2015 at 15:24

You a donny man BR...that's where I had my scans

Bri

User
Posted 11 Apr 2015 at 15:48

worksop

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 11 Apr 2015 at 15:58

Ha...I work there

User
Posted 11 Apr 2015 at 19:03

Sonic lottery tickets in hand ..good luck 

xx

Mo

User
Posted 13 Apr 2015 at 13:21

Hi Bri,

just picked your thread from sonic

I am brand new to this, got diagnosed about 4 weeks ago with localised PC, PSA 5.90-6, Gleason of 3+3 and 3+4, apart from that feel great !

going for Robotic surgery next Monday at the Freeman in Newcastle.

Just wanted to start a profile going with similar people

Best regards

George

 

 

 

User
Posted 15 Apr 2015 at 21:04
5 days in to the antibiotics and ...boom no pain...oh jeez..there is a god...I cannot stress how much that hurt.

I've never had a urinary infection before,and I wouldnt wish it on anyone....i,d rather of had a 6'6" rugby player in front of me ,kicking me in the groin for a week.

Suffering a little stress incontinence now..but nothing to bad,my penis always had a mind of his own anyway.

Blood psa result on Monday and follow up app a week after.

Hope everyone is doing ok?

User
Posted 15 Apr 2015 at 21:06
Hey geoerge,good luck with the Robotic,this was my final choice and so far feeling good about it.early days of course,2 weeks in..but hoping the results will be favourable.
User
Posted 16 Apr 2015 at 10:35
Hi Sonic,

Pleased you are feeling better. Fingers crossed for the follow up. Had my catheter removed on Monday. Initially quite a bit of stress incontinence but things seem to be settling down a little.

Take care.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 16 Apr 2015 at 13:22

Hi Paul,

Yes,the stress incontinence seems to be part and parcel.i wasn't quite sure at the start how bad or not it would be.
I,m coping with it too,and it's one of those things you got to put up with for a while.
Keep up with the Kegal exercises,they seem to be helping me,and leakage is at a bearable minimum now.
Glad your doing ok.
Steve.

User
Posted 16 Apr 2015 at 13:45

Hi Steve,

 

Thanks, good luck to you, hope your recovery carries on and you get a good result on Monday.  Can you throw a bit of light on stress incontinence and Kegal exercises. Pardon my ignorance but still finding my way mate !

Hope everyone is making progress !!!

George

 

 

 

User
Posted 17 Apr 2015 at 02:00

Hi George,

Stress incontinence was a term I'd never even heard of myself a week ago mate,lol.though I now feel qualified to comment.
In my very humble opinion,it the lighter side of incontinence.a light dribble from coughing,sneezing,flexing muscle,or even a slightly over full bladder can do it.
As I say,i,m considering my self lucky to be in this merry band of incontinents.anything more than this and I,d be in a man pad.
I think it can vary greatly from person to person,dependant on age,fitness,your general wellbeing basically.
The Kegal Exercises are your Pelvic floor Exercises,probably best to google and if in any doubt check in with your GP,for advice.
I found online help and advice for trying these before surgery and am quite convinced that by following a regime you can minimise or stay the flow..:)lol to a degree.i did these and they helped.i,m still doing them daily and they help.
Godd luck Bud..
Steve

User
Posted 17 Apr 2015 at 08:01

Hi Steve,

 

Thanks for that mate.

Stress incontinence duly noted, ;0)

I have doing the PFEs since diagnosed about 5 weeks now (hopefully the right muscles - only time will tell !!!)

Thanks for your support pal, I will keep you posted. Robotic op on Monday.

George

User
Posted 17 Apr 2015 at 14:02
Hi,

An update on my continence status. 4 Days since the catheter came out. When I'm sitting or in bed there is only the odd trickle. However if I stand up or walk around there is a constant flow. I know it's early days and I am doing the pelvic floor excercises. Things must still be settling down after the op because there is still blood in the urine.

Just wondered if this was what others experienced?

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 23 Apr 2015 at 23:15

Hey Paul,

How's things?
Any improvement?
I can tell you that it does improve,I might be one of the lucky ones in so far that I,m nearly 100% dry now.
The last 2 days I,ve experienced no leakage at all bar one minute burst this evening when I was watching lee Evans.:)
H,es always made me piss my self but never to this extreme!
post op app is looming for me on Monday so hoping for good news re my greater concern.
Hope your improving mate,it will in time.

Best regards Steve

User
Posted 24 Apr 2015 at 09:54
Cheers Steve,

Yes I think things are improving. Virtually dry at night and I only really experience major leaks when I am on my feet for a while. Pelvic floor is helping I think.

Good luck for your follow up. They seem to be nice and prompt with your appointments where you are. My follow up is not until 12th June.

Once again, fingers crossed for you.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 24 Apr 2015 at 11:33

Cheers for that Paul,
Glad to hear your seeing improvements,
Yeh,the care and service i,ve received has been top notch so far,can only have praise for the way I,ve been treated.

Hey George,how's things mate?
How was the surgery?

Best to all,Steve.

User
Posted 24 Apr 2015 at 11:55
Steve I am really pleased to hear you're still doing so well also that you are linking up with Paul and George seeing as you all had surgery around the same time.

I wish you the very best for your post op review on Monday too.

Best wishes

X

Mo

User
Posted 24 Apr 2015 at 20:38

Hey Mo,

Many thanks for the encouragement,you,ve been a star since I came on here and I appreciate you have your own struggles to contend with.
I hope all is well with you too.
Paul and George are stable buddies now,lol,hoping to hear some feedback from George soon as he went"under the knife" most recently.
Got a question for you,did you experience any change in your sensations when peeing,I get the usual feelings but it's almost painful when I pee,it's not, but its like the pain I felt when I had the infection,but doesn't turn into that pain full blown,it recedes as I finish peeing.
I,m only guessing,but I think it could still be the effect of the catheter removal and the healing process still in progress.

All the best to everyone,
Steve.

User
Posted 26 Apr 2015 at 19:48
Hi All

Apologies been under the radar (and sheets lol !) since Monday

Update

Had the op on Monday 20th, discharged on Tuesday, get the catheter removed tomorrow. Then the next step !

Will keep you posted on pee, pain, progress, pads, etc following that.

Hope everyone else is bearing up in the "band of brothers" and best wishes to all

Just read about irun, that is one phenomenal human being,

Puts it all in perspective

George

User
Posted 26 Apr 2015 at 19:53
Hi Paul

That is great news mate, sincerely hope you continue well

Will keep you posted

George

User
Posted 26 Apr 2015 at 20:20
George yay ...even if you are posting on Steve's thread it is great to hear you are doing well too.

Xx

Mo

User
Posted 26 Apr 2015 at 22:58
Hi mo

Thanks for that, great to hear from you. Takes me all my time get logged on never mind follow threads and the like lol.

Hope all is going well

George

User
Posted 26 Apr 2015 at 23:02
Hi Steve

Good luck tomorrow pal, how did your psa go last week ?

Cheers mate

George

User
Posted 27 Apr 2015 at 09:10
Thanks George,

It will be a relief to get the catheter out. Hope all goes well.

Take care,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 27 Apr 2015 at 20:28
Thanks Paul

Catheter out, big relief mate. Now the next battle, continence or incontinence that is the question .

Got off to a decent start this morning at the hospital this morning and was delighted to have an element of control, concentrated on the the stress points but then wallop one creeps up on you from nowhere. Been bang into pfes since the beast came off and think I may have overdone them. Tomorrow 's another day mate.

Hope you are well, how's your progress .

George

User
Posted 28 Apr 2015 at 10:01
Hi. George,

It's not something you can prepare for. 2 weeks since mine came out. I am dry at night and if I have a sedentary sitting around day. If I am walking about a lot I have little control back. I can stop and start the stream when I pee, so I am presuming this is a good sign. It's early days and I read some guys take many months to get control back. Onward and upward. I am waiting for an appointment from the continence cliinic to see if they have any further advice.

Take care,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 28 Apr 2015 at 11:13
Hi Paul,

First night post removal was quite uneventful, couple of leaks but got up twice, controlled and managed to make it.

Very similar to yourself if I am sitting down it is manageable, big concentration on the stress moments and working from there.

Will be increasing the pfes now I am liberated and feeling human again.

Good luck Paul let me know how you are doing mate

George

User
Posted 29 Apr 2015 at 23:47
Hi Fellas,

Just a quick update on the plumbing.Seem to have had a little breakthrough today. I have been more in control and have only had one pad all day. I have been getting the sensation of needing a pee now and am having a good bladder empty when I do do go. This has been all of a sudden and hopefully is a sign of things to come.I'm sure the pelvic flooor excercises have helped.

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 30 Apr 2015 at 11:26
Hi Paul,

That is really good heartening news. Are you still sitting about most of the day or are more active ?

What's the night shift like ?

My update is last night was a comparatively pretty dry night, up a couple of times and managed to control until the toilet

Daytime wise, still taking it easy but find if I am on my feet for more than say 15 minutes, Gravity is challenged and bang a "suddener

Today I am going to start a chart and monitor them while still drinking 3 litres a day

Doing about 10 reps of pfe every day, set my alarm for every 90 mins.

Delighted for you Paul

Keep on battling brother

George

User
Posted 30 Apr 2015 at 12:27
Hi George,

My activity levels are a lot more now. I am getting out and about.I am even jogging up stairs now. Went to the pub last night and after 3 pints I was still able to more or less control my leakage and was going to the gents like normal. The big plus for me now is that I feel the sensation of needing to empty my bladder. That feeling has only just come back and has given me more confidence.

Up until last night I was double padding during the day and night but I only had the one pad in bed and was dry. I was up about four times in the night but that was the ale. I'm going to try single pad today and see how I go on.

All in all I'm pretty happy with the progress. If I can get this sorted I think I could live with the frustration of being a eunoch.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 01 May 2015 at 15:32
Hi Paul,

That sounds great progress from here, hopefully fingers crossed mate I will not be far behind you. Gonna try a couple of beers tonight myself, might push and have a curry while I'm out ! Getting out and about myself over the past day or so. Enjoy your weekend mate, onward and upward ! Let's update after the weekend (and the football results !!! My lot are bad for your health to start with)

George

 
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