Help With Recovery and Healing process.

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Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/10/2007 6:57 PM (GMT -6)   
Hi all, Maybe Im being a big baby but I am really having a hard time with the many different things going on during recovery. We live far enough out in the country to be able to get any real good advice and too ill at times to run back and forth to the doctor or hospital. 1st let me give you my History.
 
The beginning of my journey began last October 2006 when my VA doctor didnt like the level of my PSA 5.2. He did a DRE and did not find any enlargement or evidence of a tumor. But he still wasnt too comfortable so he recomended me to have a biopsy to be on the safe side. A week later I reported to the clinic for the biopsy.
 Biopsy Report :
Elevated PSA 5.85
Preoperative Diagnosis
R/O Prostate Cancer
12 core Specimens taken
Prostatic Adenocarcinoma Right core biopsy
Gleason score 4+3 (7/10) involving 6of6 cores
40% of tissue vollume
Left core biopsy
Focal Atypical Acinar cell proliferation.
staging T1c
 
All greek to me but it meant I was postive for Prostate Cancer. Doctor broke the news to me and my wife. I dont think I heard much past " You have tested postitive for prostate Cancer."
Im a 58 Y/0 Male with a few medical problems ( 2 stints in heart) and over weight. But other than that was pretty healthy. We were recomended to a urologist. we met with him and he discussed the treatment options available. Radical, Hormone, DaVinci, radiation, Beam radiation etc. Recomended us to read DR. Walsh's book on surviving prostate cancer. I go the book and did learn a lot about the disease and the treatments. ( didnt read all of it as some of it scared the crap out of me) but did decide that radical at my age was the best route to go. Get it all and get it now was our motto. Also wanted the surgeon inside where he could get a real good look at things. Surgery was sceduled for Jan 16, 2007. We had a freak ice storm so surgery was rescheduled tor Jan 20th. I read more on the sugery and panicked. Cancelled the 20 th surgery.
After a week I calmed down and realized it was still the best way to go. Rescheduled March 20th. Didnt chicken out this time. Got as positive mineded as I could get and just closed my eyes and let the have at me. ( will do a surgery post later ), When I came out of surgery was shocked as I didnt really hurt and was able to sit up on bed about 5 hours after surgery. Doctor was amazed as I was walking up and down hall with wife all evening. Next day I still felt pretty good and doctor took out the drain tube in my belly. By evening all body functioins were working and he asked me If i felt good enough to go home. I SAID YES ( big mistake, More on this in a few). He discharged me on day after surgery. So i dragged my cath bag and departed the hospital. I should have know it was a false sense of security that I was feeling so good.  I need a break so will continue this post later... sorry not feeling well right now... be back soon
 

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/10/2007 10:10 PM (GMT -6)   
Hope to hear more.....Hang in there.

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.
    Return office visit May 2nd unless leaking starts agian.
    May 22nd Follow up and 3rd Post Op PSA
   


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 4/10/2007 10:14 PM (GMT -6)   
Hi Telstar:  Get some rest and continue posting your story when you feel up to it.  You'll get plenty of feedback here.
You are not even a month out of surgery, so don't be discouraged if things aren't going as well as your doctor may have suggested, or as you had expected.  It takes time  -- and nothing stops the clock -- so time will pass and you will feel better.
Look forward to hearing from you and hopefully offering some advice.
Tom 

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/10/2007 10:37 PM (GMT -6)   
Hi ~ Telstar,
 

  :-)    Thinking of you and wanted you to know  that we are glad you are reaching out to all of us.

Continue posting as you feel up to it…. In New Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/11/2007 9:35 PM (GMT -6)   

Thank you KW, PianoMan,and BlueBird. I appreciate your responses and amd grateful for your support.

Ok, Sorry Ive been a little slow at posting but have been in one the the bad spells ( feeling sick) Im still a little shakey but will try to cary this a little further.  Good days bad days yesterday and today were not so good days.

Cont from first post:  After I got home feeling like a champ for getting out of the hospital about 2 am wound up in the ER due to my heart accelerating to 200 bpm and blood pressure up to 190 0ver 110. They found out that I was having a reaction to vicadan pain killers. Any way they got it settled down and I got back home about 6 am. Exhausted sick and feeling bad was really mad at taking the early out from the hospital. I suffered all that day with severe pains in penis and testicles from catheter as well as severe swelling of the testicles etc. Was really panicked at my penis. I was not very big in the first place but this was totaly rediculous < sp. I am circumsized and my penis was gone up inside my skin pulled clear back to almost pubic. And it hurt. Looked like a tennis ball with a turtle neck sweater on. :) I cleaned  the area well and lubed the cath tube with some neo sporin cream and was able to pull it back out to where I could see it again. Had to do the several times for first week to see him. It was bad as i could not pee well with him up inside. just trickle and drip. So had several I guess i could call the anxiety attacks as manay strange feelings and things happening to me in first week If it had not been for my wife I think I might have got stupid and done myself in. I mean I was totaly blind to the things that little walnut size organ can cause when removed. Pain on 1 to 10 scale at least 6 to 8. It totaly imobilized me at times. Could hardly eat with out hours of wanting to heave. No position was comfortable recliner , bed on couch laying down side back in chair. AND no pain pills due to reactioin only tylonol. I have a good pain threshold but this took me over the top. I didnt hurt this much when i got shot in the army. Had several bad time with catheter pain but dut to diligent maintanace cleaning and lubing with neosporin and drinking a gallon plus of water after about 4 days got to a acceptable level of pain.  Im probably going overboard with all this descriptive details but it applies to what I will be askiing later so bear with me.

Well after all that I made it to the catheter removal days. I think if I had know how to deflate the little balloon I woud have saved the trip about 5 days ago. :) Thank the Lord I was afraid to pull out a catheter with inflated balloon. :) .

Ok here begins my concerns list that I would like comments on.

1. When catheter was removed I was dry with no leakage except for a little fluid injected by doctor. ( I was thrillled ) He checked me over and seemed satisified that all was well so I didnt panic. ( my first lesson on taking advantage of the situation. ) I was happy catheter was out so I didnt bother to ask about the problems I had with it and the illnesse etc. WAS so glad to be free and felt all would be well from here on as pains were sort of bearable. SITUATON : Got home ok wearing my first pad and whity tighties. Was almost dry except for a little dampness where penis was. 4 hours later still no urine. Finally felt a little need to go to bathroom 5 mns of dribble dribble and notice my anus hurt severly. ( oh fogot had to sit to even get the dribble wouldnt do nothing standing up ) also only way I even got the dribble was I needed to pass gas and had to strain due to sore anus ( felt like anus was glued shut to had to really strain as gas passed dribble started up. After that only time I would pee was when I was taking bowel movement. Made mental note to call doc next day. I put on my depends pull ups at bed time and pain was low so fell asleep and actually slept fairley well ..... almost about 3 am ( went to bed at around midnight) woke up diaper full bed soaked wife soaked etc. We got up and while she changes sheets ( had a nice bed protector so no damage to bed. ) I took a shower and put on new diaper. back to bed again. Almost every hour from 4 till 6 when I gave up trying to sleep it hosed us down. I love my patient wife at this point. Was really dissapointed. I FINALLY felt the full brunt force of incontenence. But during the day still had to sit and strain like having a bowel movemen to dribble. ( guess it didnt dribble but hosed when I was asleep ). Im at 3 weeks now 1 week post catheter and even though I can stand and pee I still have to push like passing gas or bowel movement to get a weak stream going. I have on rare occassion had a good stream and was able to keagle and stop flow 3 times but only rarely.

Question > AM I just being anxious and this can be considered normal? Or should I have better flow at this point ? Could the having to push hard and anal pain be due to the fact that I have hemmoroids that flare on occasion. I have had times I can pass gas and not pee and no pain but not many. Also I have pains for no reason betweek penis and right at point where penis runs into scrotom and get lots of sharp pains there. Mostly when having to push to pee. Pain is in both the scrotum and Penis.

Whew on out in the open now :)

Ok Is it normal to still have pain in the perineural area when standing up and some times when turning over while lying down.

Have at times lost some mobility of left leg. Can walk and stand fine but if I am laying down can not lift leg stiff straight up at all lots of pain in groin. can not move leg to right laying down can move left but not right.  ( possible nerve problem ? didnt have before surgery )

Stomach is constantly upset ( light feeling of wanting to trow up but not doing it)

Light headiness, Hot Flashes, Sensitivity to heat and cold, Flushing of skin ( creepy crawlies ), and occasional cramps in legs and stomach ( < I feel these are normal but wanted to express it anyway )Ill let everyone ponder on this for now as it is most of it.

Maybe Im just turning into a hypochondriac or big baby but It is causing me concern. I do forget Im only 3 weeks out from what is rated as one of the hardest surgerical recoveries other tban transplants. God bless....    I need a break again .  a fellow in pain  telstar

 

Also forgive my typo's ( my second language )  spelling and grammer but Im just too tired to edit and fix it all :)

 

 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/11/2007 9:46 PM (GMT -6)   
I would not think you should be having that kind of trouble trying to pee.
I never had any of the sickness or cramping other than bladder spasams. Dertol LA seemd to take care of that.
I would call my Dr. and tell them about everything!

Good Luck,

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.
    Return office visit May 2nd unless leaking starts agian.
    May 22nd Follow up and 3rd Post Op PSA
   


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/11/2007 9:48 PM (GMT -6)   

OH YES forgot post op path report

will condense to important findings

took 8 lymph nodes left pelvis , 5 lympy nodes right pelvis all negative

Urethra distal margin margin biopsy cancer adenocrarcinoma present

Prostate gland . Prostatic Adenocarcinoma Gleason grade 4+3 (7/10) Involving 60% of Prostrate  volume Extent involves both right and left lobes apex and base

Seminal  vesicles not involved Perineural invasion present No lymphovascular invasion identified Positive margins of resection right apex block D1 No extra capsular extension seen

TNM pT2c no MX

Bladder neck, Margin excision No evidence of malignancy

 

my current PSA  2 weeks post .021  ( is that ok ? )

wont have next appointment for PSA and follow up till May 2 for next PSA

So what you all think I know its not good but not all bad either.... God Bless

 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/11/2007 9:51 PM (GMT -6)   
My two week was down about 95%. You are absolutely headed for zeroes and God willing, you'll be feeling pretty darn good in four weeks when you get it.

Good job!

Take care,


Tony

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 4/12/2007 4:31 AM (GMT -6)   
Telstar,
Your description of your discomfort sounds like normal discomfort from the trauma of surgery and the reaction to general anesthesia.  Some people have more problems with these than others.

My thoughts are the same as others':
Rest.  Walk.  Drink a lot of water.  Tell your physician everything.  Stay positive.

I'm in week 8 and - while still challenged daily by something - every day I see some improvement.

Holding you in good thoughts.
Cedar Chopper
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Confined:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 234
   Posted 4/12/2007 9:17 AM (GMT -6)   
You have just experienced a major invasion of your body and unfortunatly it is going to time for it to heal. It has only been three weeks or so and it is going to take time. With your health condition and extra weight you mentioned your body is already stressed and this surgery just really put it over the top. So, you must understand it is going to take time. Try to do what you can in the exercise area walk walk walk and kegel kegel kegel. As others have said tell the doctor everything, and this is important LISTEN TO WHAT THE DOCTOR SAYS. Try to think about the good news that the cancer is gone. This disease is a big life changing experience and we must be willing to make positive changes in our lives to over come it. Keep moving even if it hurts, again walk walk kegel kegel stretch stretch just keep moving, it will pay off big dividends. God Bless You

Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/12/2007 7:11 PM (GMT -6)   

First of all let me say thanks to you all that have responded to my plea for help. After reading the responses I have seen so far I have opened my eyes and come to some real personal conclusions and I'll share these with you. I did like most of you asked and called my doctor and told him of my situation with the recovery problems. His response was like you all .... its only been 3 weeks and the severity of this sort of surgery is a major trauma on more than just the confined area of the prostrate. He is a little concerned about the pee problems and said if it hasnt changed by my May 2nd apt we will do some tests and see what is happening but not to concern myself right now as it is still early. OK now on to what I've discovered on a few hours of contemlating my navel and careful examination of my situation I have discovered the following.

1. Yes I have forgotten what a serious operation this is and need to quit dwelling on all the negative things that have happened.

2. Quit putting the cart before the horse and realize some things have to heal before others can.

3. Get out of this doomsday mental state I have allowed myself to fall into and realize I HAVE had several postive things happen since surgery. A. Got rid of the nasty catheter. B. Most pains have not been as bad as I have allowed myself to experience. I think I mean I make  a mountain out of the old mole hill on the pain. C. No matter what things will improve and quit dwelling on each thing as a permanant situation. D. Stop thinking every pain twinge itch cramp wet pad etc. is a serious incident. E. STOP feeling sorry for myself and realize the REALITY that I have survived one of the most dangerous and hard recovery operatioins that exists and am ALIVE. F. Keep praying and believe that I am going to someday be OK again and quit trying to make it happen tomorrow. G. Communicate with doctors friends family and you all and quit keeping it all inside.

I happened to have a wonderful day today. Almost no pain, was able to walk twice as far as I could last week. Even had a small erectioin ( hmmm ) so maybe there is hope there. Wife was giggeling at me but I dont care I thought it was great.  Even had  a couple of times I felt the URGE and made it to the toilet and actually had a good flow and was able to shut it off and on. I have had a few in the past but the difference here was I pre-detected it. So now have hope of end or better incontenance. I have decided that I let this depress me and I am going to fight back now. I know I will still have dissapointment and victories but to punch through each one and keep on forward movement. Over all I have to admit most of my problems has been lack of communications with others and allow my own imagination to control my hopes and moods. So maybe now I am on the road to recovery.

God bless you all and just the few things said to me by you all has made a major change in my attitude and mental state. Thank you all for your support concern and compassioin.

 

 

HUGS were appropraite and HANSHAKES elsewhere

 

 


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/12/2007 7:32 PM (GMT -6)   

Ok after all that I have a few normal questions

1 what is the best way to deal with wetness... Should I use a cream guard. I have a little heat rash and was able to clear it up with zinc oxide ointment but what is good to prevent the times when your wet from creating any rashes.

2. I wear a Depends Guard pad in day are these the best as at times I over soak them. I use a dependis diaper at night and they seem to contain ok. But dont want to wear them in day is they can get hot and I have to fight rash at times. Also dont feel comfortable under clothes.

3 Keagles > At present am not having much success ( not rushing it :) but when and how many times a day should I do them. I dont really have good flow yet so dont get too many chances to do the standing up and stop and flow technique. Doctor said that I should only do them when I have flow going and standing up... However since I dont have that part whipped and am sitting down most of the time when I pee and only dribble. Can I do keagles at other times than on toillet like when just sitting around and if so how should they be executed.

 


56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 234
   Posted 4/12/2007 7:52 PM (GMT -6)   
Don't know about the wetness rash control. But get Kegel on your brain. You can Kegel anywhere anytime at the computer at church in bed on the road anywhere anytine and you can't do to many. You just have to think about it. You my friend are going to be ok It will just take some time. Keep that positive attitude look for the good in every situation.

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 4/13/2007 4:24 AM (GMT -6)   

Telstar,
At the risk of being a bore, I'm copying something I wrote about Kegels.
'56 Pontiac is absolutely correct!  "Kegel" is a verb for us.

As for dampness and heat rash:  Two or three times a week I use an anti-fungal cream for a barrier cream.  At other times I use either regular lotion or petroleum jelly.


Old Copy:
)))))))))))))))))))))))))))))))))
Improving the  "recruiting pattern" for the Kegel muscles - that is what my "bio-feedback pelvic floor muscle therapist" has me working on.  The pelvic floor muscles include the muscles around the anus (as you noted), those that can consciously stop the urine flow (see Lifeguyd's description), and the (VERY) lower abdominal area of the pubis that is just above the penis.
My therapist says that while stopping urine flow in mid stream can isolate the muscles (see Lifeguyd's idea about feeling below the scrotum), my therapist says that you should NOT use "stopping urine flow in mid-stream" as an exercise as you are confusing signals to the smooth muscles controlling the bladder and its valve that you have no real conscious control over.

I am one of the patients that uses the "walking around nude with a cup" method.
However, now I just use old t-shirts as the leaks are now small and the cup is awkward and spills.
The benefits of "walking around nude " include immediate feedback of leaking, zero tolerance for leaking (LISTEN TO LEE & BUDDY BLUEBIRD!  NO CLAMPS.  NO BAGS.), and staying dry between 10 to 14 hour shifts at work with pads. 
My latest variation on this naked exercise: When I awaken in the morning (from sleeping nude over a bed incontinence pad) with a full bladder, before I relieve myself, I stand over the toilette and cough REALLY hard while trying to keep from leaking.....  I still have a lot of work to do for that kind of control!
My therapist calls flexing all the pelvic floor muscles for this kind of control "bracing."  (For example, while lifting 80 pounds or sometimes just sitting up from a reclining postion with a full bladder....)

AS FOR THE "ELEVATOR KEGELS":
The idea is to use the same pattern of sets of ten you currently use.
However, you flex at half strength for 3 to 5 seconds,
  then full strength for 3 to 5 seconds,
    then half strength again for 3 to 5 seconds,
        (this "elevator going down" part is the most difficult and most beneficial)
      then rest for ten seconds.
IF YOU CAN, DO SETS FOCUSING ON ALL THREE AREAS OF THE PELVIC FLOOR MUSCLES (ANUS, "URETHRA SEAM,' AND LOWER PUBIS) - AND THEN TRY SETS CONSTRICTING ALL THREE SIMULTANEOUSLY.
My 30 minute commute allows me real focus on these exercises.  I am getting stronger muscles and a little bit better "walking around & lifting" control each day.

The idea of doing these on the stairmaster (Thanks Mama Bluebird!) is sound.
I "Kegel" while uing a Total Gym in rowing machine mode -and just on the floor doing  "backstrap focus stomach crunches."
The main idea is that as you use variable strength in various movements and positions-
you refine and develop the "recruiting patterns" and coordination of the muscles you will need both unconsciously and consciously.
  
(My personal goal here: Zen Shaolin Urology Kegelmeister....  eyes )

Try to remember:
Who(se) you are,
Where you are going, and that
God's Presence is very familiar with (toilette training!) His children.  :)
((((((((((((((((((((((((((((((((((((((((((((((((((((((((((
END OF COPY

Cedar Chopper


~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Confined:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 4/13/2007 9:22 PM (GMT -6)   
Hi Gene:  You sound like you're heading in the right direction!  It's amazing how even one good day can change an attitude.
I heard you should avoid urinating while sitting down, if possible, except of course when you're having a BM.  Also heard that Kegels should be done when the bladder is empty.
I still have a hard time isolating the exact muscles that are involved in Kegel exercises but discovered something recently.  I take both hands and (from outside my pants) touch the area where my penis is when I do the contractions.  It's like the body and mind come together, because I've never done contractions like that without having my hand or hands on my penis during urinatinon.  So, even thought I am not urinating during Kegels, I think it has helped me isolate the correct muscles.
Hang in there tough guy -- it's gonna be OK.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

 

Courage is fear holding on a minute longer.”

George S. Patton

American Soldier and General


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/13/2007 10:06 PM (GMT -6)   

All of you that hare posting to me have so far been the best thing I have experienced since the surgery. I appreciate all your advise and concern. I have tried many of the things you all told me and having much better response. You all helped me cure my MIND first as it was going the wrong way for sure. I am noticing most of my experiences are not unique and that helps a lot. I do forget I am only 3 and a half weeks post op and that have several more weeks or months even to get to the goal I want to be at. As many of you to go from a fairly healty and active life to sudden brick wall is not a pleasant experience and I am learing to deal with it from you all. The only thing Im disapoined in is the Medical people I have had to work with. They know all this stuff but dont like to talk about it and it can cause great consternation in people like me that are experiencing this with not guidance to any extent. I cant complain about the surgery itsels as from all tests and results they have done a great job. However being VA doctors with military mentality the bed side and follow up help is very lacking.

 

I did learn a good lesson : on the first day you feel great dont go out and mow the lawn: YES likea idiot i did... Logic was its a self propelled mower and a tractor mower so not stress on body Wrong... :) boy am I paying the price today... LIke it set me back a week :( but Ive learned DONT DO IT. Wife was all over my backside but I am to blame for it...

God bles you all and please keep posting as it is a help

 


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 4/13/2007 11:25 PM (GMT -6)   
Telstar -- Patience, Patience, Patience. 
 
Give yourself at least eight weeks to heal -- to hell with that six-week rule of thumb!  And let that freakin' lawn die if necessary!  You'll be glad you did and you'll be double-glad when you bring it back to life, feeling like your old self.
 
I'm about 12 weeks out and back to my normal posture, lifting things, bending, throwing the ball with my son etc.  I could not do those things at four weeks out of surgery, without creating problems for myself.  Like you, right after surgery I took some risks I shouldn't have and paid for them.  You are still healing inside and it takes time.
 
But time flies.  So take it easy -- it's worth it.


54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

 

Courage is fear holding on a minute longer.”

George S. Patton

American Soldier and General


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2007 8:29 PM (GMT -6)   

Hi ~ Telstar & Loved Ones,

 

Caring Enough to Share…..

 

 

  A   “Special”  Warm Welcome  to  You!  yeah   

 

This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey.  Thank you for joining all of us in the continued road to HealingWell…..

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

 

You are a wonderful addition to our forum family!!!!  Thank you for sharing.

Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy

 

“God Bless You” 

It's a little prayer  ~  "God Bless You"  ...but it means so much each day,

It means may angels guard you and guide you on your  way

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2007 8:36 PM (GMT -6)   

Hi ~ Telstar,

 

     :-)    Thank you for our HUGS…..

 

You have had some wonderful responses to your Thread!!!  And ~ it truly is wonderful to see you process your situation…  this thread will truly help others in the future… and is definitely helping you at this time…  Thank you for reaching out!!!!!  It is so important!

 

Everyone has their “own” experiences and that’s what makes this forum so powerful…  You must read and work through what works best for you…  The link below is from the Helpful Hints page that is attached to your special welcome page…  Click on it and read some extra info on Kegels…. 

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Kegel Help?

Started by:  KW

 

It’s wonderful to see your mental strength coming around…  I’m going to send you a special rainbow to help when the clouds cover your “Sunshine”.

 

 This is “YOUR” rainbow sprinkled with sunshine!!!

////////////////////////////*/////////////////////////////////////

//////////*//////////////////////////////////////////////////////

/////////////////////////////////////////////////////////*//////

/////////////////////////////////////*//////////////////////////

 

Rainbows brings smiles, smiles bring positive energy into our being!!!

 

 

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/14/2007 10:41 PM (GMT -6)   

 

Thanks BlueBird,PianoMan,Cedar Chopper,56Ponitiac,TC-Lasvegas and Kw for your great responses and for not riding me too hard on my first few posts when I was caught  up in self pity and negative thinking.

You all have been right I am being a little to impatient on my recovery ( patience is not one of my best virtues )

Only thing im curious about tonight is as Im learning to interpret my urine feelings to see what is peeing and what is not. Ive noticed that I get  warm feeling at times but when I check Im dry. However at other time when I get the feeling im soaked. Hmmm I hate it when I head for the toilet  thinking I need to pee and stand and stand ( sink water running ) and nothing happens. Then later when I think it is just a warm feeling and ignore it I flood myself. Ill figure it out hopefully. I am still experiencing some pains in the ureathea of my penis and anus but they seem to get a little better each day. Stream is still dribble at times and at other I do get a weak and sometims strong stream.

I am coming up on 4 weeks post op and two weeks post catheter. I have been reading all you all said about kegals and have Dr Walsh's book now. Doctor at hospital did say not to try keagles while catheter is in  place and I didnt. After Catheter was out pain and things kept me from doing much in the way of keagles also. Now that I am almost 4 weeks and gettting some what of a cycle of peeing and minor peeing problems Im starting my keagles. Im a little concerned as I have not really done much till now. A few and I mean few when pain allowed but not like I probably should have. You dont think Ive waited to long do you ? I plan on starting out with 5 reps on the hour for 8 hours a day tomorrow. Is that to much or not enough as I dont want to over do them. I will use the butt squeeziing technique and will do a few on the side for the stomach ones if I can figure them out.

Also a question ?  I seem to still have minor stomach neausea. The kind that feel like just before you want to throw up. Not strong and pass quickley but will experience them several times a day for a few second each time. Has any one else had this minor problem and if so what do you suggest to stop them.

Again thanks all God bless and hopefull to heare more from you people

 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2007 11:50 PM (GMT -6)   

Hi ~ Telstar….

 

I forgot to put this in my posting above… We were going to watch a movie but it was 2.5 hours long so decided to watch a show on TV instead!  It’s late 12:48 p.m. EST… but wanted to drop you a quick note. 

 

I’m thrilled you have your book!!!  Now go through it and learn lots from it.  Don’t be scared of it.  It has so much information that it can only help.  You don’t need to read the last chapter… but it is a chapter that is there to help and I did find it well worth reading so I could understand what others are going through. (I read it several months after our surgery)

 

Now about that lawn mower…… Oh Telstar…. Not a wise decision for sure… I know ~ I don’t have to tell you this.  You found out first hand.  That little sphincter muscle is the main thing that’s going to help you with getting continent…  and you need to protect him at all cost!!!

 

Have you seen Biker90’s regiment for doing his Kegels? ? ? ? 

 

Take care for now…. Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/14/2007 11:57 PM (GMT -6)   
Hey Telstar,

Its never too late to do Kegels. But remember that little muscle that controls pee is pretty sensitive. Don't overdo it. I did 5 secs on, 5 secs off, for 5 reps on the hour 10 times a day until I dried up. And it took a while to figure out the signals that were coming to my brain from down there. It was a couple of months before the swelling was down to where I got full baldder capacity and could control everything. Stay with it and it will get better....

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/15/2007 1:16 PM (GMT -6)   

Hi ~ Telstar & mama Telstar,

This posting may have repeat information from my previous postings… this is due to wanting to get a note to you after being away for a few days.  I was waiting to hear your follow-up and so now having taken the time to re-read all your postings…. here’s a few more of mama bluebird’s… chirp~chirp~chirping

After going back and re-reading each of your postings…. We are so pleased you posted ~ plus we like the title to your Thread!!!  There are men out there that are reading your thread saying… “This is what’s happening to me!”  So ~ realize right now that because you’ve opened up and have shared deeply… ~ you are now helping others!  It’s a wonderful feeling and it’s evident in your posting that changing “attitudes” truly help to allow you to move forward in a positive motion.  Here’s a prime example from a previous post of yours…partial quote from above!!!  I happened to have a wonderful day today.  Continue on this path of positive thinking.  It is so important that you realize (which you have now)…. You are on a healing / recover stone and you must take the time to heal…  If you lift heavy items or pull yourself up out of a lounger… you are going to hurt yourself and this is something that can be avoidable.  The riding lawnmower…. This still makes us want to cry!!!   We’ve protected this area and will continue to protect the little sphincter muscle for the rest of our lives.  (no more riding bikes, horses…for us!!  a personal decision)

:-)    Give your wife a “special HUG”….  It made us smile when you wrote about her giggling….  Laughter is great medicine and it truly promotes healing.   In your postings you stated that communication was lacking.  This is where you have to know what’s going on and you have to push forward to find out answers.  Fear and not knowing can drag you backwards to the point of pure hell… so don’t get to far back ~ okay!!!  Print out your postings…. highlight the areas of your concerns and take it with you to your next appointment if you think you’re going to forget an important issue.  Do it!!!  If your mind is at ease…. You will have a more positive attitude and again promote better healing mentally and physically.  So ~ Just Do It!!!   You will have ups and downs…. And that’s where we come in!  Continue to reach out ~ okay!!

It sounds like you’ve got the wetness issue and rash taken care of… good advise from those who experienced the same.  Buddy went without underwear the whole time with the catheter.  And we never applied any ointment to the penis/tubing area.  Instructions from urologist that the body produces natural mucus.  We did keep the area clean with soapy water but never dried the tubing.. and we had ‘no’ issues with the catheter at any time.    Again ~ different ideas work for everyone.  That’s why this form is so important in the sharing.  We are allowed to pick and choose what works best for “us”…

 

Your question in the last posting….. You don’t think I’ve waited to long do you ?  No ~ it may take a little longer to see “continence” due to not working the muscle before hand… as long as you start “now”…. (see Biker’s posting above)  We are not going to counteract what your doctor or what other members share with you.  But we will share our personal thoughts….. we feel that the kegels should be done before surgery to get this little guy ready to do a job that he’s never had to do before, then after the catheter is removed ~ this becomes a lifetime exercise to help continue “continence”.   Buddy continues to do the stop,start,stop,start… during urination.  The walking (7 days / week) and the Stairmaster at the Y! (2 days / week) is the exercise that he feels helps with the strengthening of this muscle on a continued basis.  I just turned to him and he no longer does kegels other than when urinating.  Remember… it is a work in progress.. and we are 1 year past surgery.  So ~ it is different until you get a good control.  SO ~ you must listen to “your” body and decide what works for your situation.  That’s why this forum is so powerful!!!!  Options become available and you pull what you need from “all of our” experiences. 

 

I do have concerns that you are having to strain to urinate…. Watch this carefully because you do not want to have scar tissue build up to the point that you are completely blocked.  Monitor this closely so you recognize this and can act quickly.  It is not uncommon to have scar tissue build up and close off the uretha. See page 243 in your book… Bladder neck contracture.  Again… just be cautious and know the signs….  Chapter 8 is a must read and a must re-read in our opinion.  Learning more each time we read it.  And having experienced things that are right there on the page…. truly takes the fear away…  So ~ keep moving forward with your positive attitude and don’t hesitate to make an appointment if you still have concerns.  Question?? Are you taking stool softener??? The less stress/straining you have on the area is better all the way around. 

 

Placing our personal experiences on this forum is so important…. Allowing so many to realize they are not alone.  We are all traveling the same path toward becoming prostate cancer free and having a few helping hands to hold along the way is so rewarding for all of us.  Some of our paths have extra stones placed in front of us and that’s where we hold those extra close to us…  This Journey is best traveled with Friends…… 

 

Continuing to keep you close as you continue forward on the recovery/healing stepping-stone on Your Journey.

Thoughts and prayers are with you ~ In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 4/15/2007 7:01 PM (GMT -6)   
Hi Telstar: The nausea you mentioned is common, in my opinion. At least it was for me. During the first few weeks of recovery, I'd wake up some days feeling like I was almost normal, then upon geting out of bed, I'd have lightheadedness, nausea etc. At the time, I was afraid to go anywhere alone with my 12-year-old, in case I fainted or something. I didn't know what to expect next because I knew surgery changes the body and mind for a while.
At about week four weeks out of surgery I began to wonder if I'd ever feel "the same" again or if I was backsliding. I was geting depressed.
During week seven, I finally started to feel my old self coming back. Shortly after, I had the spring back in my step, had more upper body strength, had better continence and much more overall energy.
Hang in there -- It's gonna happen for you too! It just happens differently for each of us.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

 

Courage is fear holding on a minute longer.”

George S. Patton

American Soldier and General


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 4/16/2007 1:42 AM (GMT -6)   

Hi all. Well things do seem to improve some and fall back a times. I am really beginning my contanance battle now and trying to work on it and not let moments of nausea and things get to me. It is mild and I can usually push through it. If it ( nausea ) continues Ill bring it up with doc. Oh heck I bring it up any way tomorrow with the tele nurse just for bugging some one sake. Dont want them to think they got rid of me that easy..

On continence subject. Ive noticed I dont need to pee much in day time even though I do drink lots of fluids. When I do I have a fair and sometimes good stream. At time I feel a warning sensation sort of like a little itch and if I head for the rest room FAST I can some times have a fairly normal stream.  Is it possible that the bladder is holding back naturaly as I dont have any feeling of fullness just till it sends the warning tingle. Am I maybe getting lucky ? I dont have much control at night though. Have to get up 2 to 3 times to change diaper. During day using a couple of pads unless I dont heed the warning feeling. Then some days I flow like a river so I gess  a lot is keep working at it and see what happens.

thanks all and God bless

 

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