Lurker comes forth

SmileyOne Member Posts: 2
edited March 2014 in Prostate Cancer #1
Hi all--been lurking since Aug. Here's our story.
Hubby got good insurance at work so broke his habit of not going to the doctor to see if there was any relief from many years of back pain. Doctor said a back transplant would be good but since there is no such thing he suggested a new career not so strenuous (he does maintenance). By the way your PSA was too high 4.98 so referral to urologist. 2nd PSA was 4.89 so hubby said it is getting better, "I just wanted my back fixed." I could insert that comment periodically for the duration of this journey Biopsy –PCa welcome to the club-- Happy 49th birthday!

We were niave and doctor said he would be cured by either radiation or surgery-did not suggest robotic as it is taking them 11 hours here. He would do open surgery if we chose it—take our time and let us borrow his book on 101 ?s about PCa. I would have trusted him and went with it except hubby did not want anyone "ripping out something God put in there". Thank God for finding it early and for hubby’s hesitancy since it gave me time for research. Read Dr Wash’s and John Mulhall’s books and this and a couple other forums. Good radiation was not within driving distance so hubby decided on DaVinci. Got 2nd opinion 4 hours drive and scheduled surgery. I struggled with lonliness at the hosp and in not having anyone really understand why it is not "just" PC did not blame anyone as I was the same a few months ago, just wanted some sympathy. Many repetitions of "I just wanted my back fixed"

Okay here goes. . . we thought surgery was scheduled for 11:15 turns out to be 1:15 actually started at 3:15 finished at 6:30 pm. Doctor came out and said –he did well, spared both nerve bundles, due to his young age, was "vascular and had a lot of weeping" (not sure what that might mean) took a little longer due to that. Had to reconstruct one side of the bladder neck. Never heard the word "but" but I felt like it was there somewhere. Anesthesiologist (sp?) came out (maybe since it was so late) said it went a little long, said "he is a good guy" hopefully it will go okay for him, seemed to pause and stand quietly for a moment, again I did not hear the word but, but felt like it was there. Said hubby was in a lot of pain so he had given him pain med and he would be groggy for a while so have a seat. about an hour goes by --
Thought it was time to go encourage and start to " be there for my man" wrong! When I saw him and heard his scratchy weak words, I almost passed out. Nurses had left to other side of room, so I grabbed a chair on wheels and sat down thought it would pass, hubby was trying to talk but words were very mumbly. My sweating and dizziness continued, said to hubby "be right back" still sitting in chair I pushed with my feet on the floor to wheel myself to where nurses were and said I feel like I’m going to pass out. So got to lay on a bed next to my hubby in recovery for 28 minutes past the 2 min limit and hold his hand and have a good laugh as the nurses and I joked about the whole thing. Didn’t know I was going to be "one of those" . never had this reaction when taking care of others.
So daughter and I are sent to his room to wait for him to be moved there after recovery. When he was wheeled in sight of him brought on my neaseau and diarrhea tried to keep it to myself but was struggling. He sat up too quickly and got pale someone was arranging his cath bag. His head fell back and eyes fixed and then he made snoring or gagging sounds I said to the girl with his bag SOMETHINGS WRONG she said SOMETHINGS WRONG and yelled for nurse, I ran for the nurse calling him too. He came in and put hubby’s head back up and called hubbys name and asked him if he is okay does he know where he is. . .snapped him out of it. Scary! Doctor said next day was probably due to having pain med and sitting up -had a little drugged up episode. Hubby was still having a lot of pain. We did not expect this as I had read experiences on other forums and in books and from the doctor this can be a relatively pain free procedure. Every moan sent me to the bathroom with D. Thank God for daughter age 11 ( almost 12 next month) she gave him his ice chips and tended to him. I was fine if I walked out of room but when in there I struggled. Tried to keep it so myself. Called some people and asked them to pray for me and ask if they knew how I could "get over this" I need to get control. Nurse felt the need to ask us why we did not choose "the good doctor" and let us know the shortcomings of the doctor we chose. Just what you need to hear hours after a surgery which may leave you with ED and incontinence!. ...We were able to spend the night with him.
Morning--Finally I received grace and was back" in control". Very humbling for me. Hubby continued to have pain even with med. Doctor said it was bladder spasms. Had his liquid diet and did his walking, could not pass gas. Bladder spasms stopped gas pain started in left shoulder. Late in afternoon was given the option to go home or stay one more day. Hubby thought he might feel better at home. Got on the road about ½ hour hubby said got to stop. Got a motel for the night. Lots of gas pain and could not find a comfortable place to sleep or sit. He felt a little short of breath (not new was like this since surgery) and had 99.6 temp. Got his thick robe off him and temp went back down. Prayed for gas to pass.
Morning still no gas passed but pain was tolerable. Put inflatable donut in car gave him pain med and drove the rest of the 3 ½ hours home, he still had shoulder pain. Got home was fine when laying down, but when got up severe (pain scale 8 he said) in shoulder. Tried to get up and do walking as much as he could but pain made him short of breath. (An old sock filled with long grain rice microwaved for 1-3 minutes makes a great heating pad. ) Called doctor in evening. Said it sounds within normal. Try to walk and pass the gas. Go to ER if you need to. Finally during the night passed gas! Cath was due to come out in 6 days, doctor changed it to 10 days.
Catheter was extremely painful the full ten days hubby had it.( read a post about one guy being allergic to latex, maybe that was the case??) Doctor said after removing it that he was swollen and our concern for the next week is not incontinence but being stopped up. Gave him Flomax to keep things flowing and something for the burning when going. Bathroom every 1/2 hour.

We got a copy of the surgery report. Nothing unusual mentioned so guess my "feelings" were just anxiety. Dr had surgery the morning of our remove cath so we spent a lot of time in the waiting room. Turned out to be a huge blessing! After that nurse at the hosp had planted a seed of doubt in my mind about our choice of doctor it was so comforting to be in a room full of patients from the same doctor at different stages of the journey comparing stories and good reports. By the time the doctor got there we already had many of our questions answered and peace of mind about our choice. "Waiting room therapy" it was great to hear the guys laughing and talking freely with others who understood.

At two weeks of recovery hubby had extreme (drop to the knees) pain at end of urinating and felt something at the tip. Call to Dr was answered with we always get these calls at 2 weeks, you are passing scabs. Advice to sit in hot bath for 45min was a Godsend. Still experiencing these symptoms but getting better. Expecting to feel fine after cath and somewhat enjoying 2 more weeks off was a disappointment. He was not able to do much due to discomfort. By 3 weeks he was wondering if he was going to be okay to go back to work at 4 weeks (due to job having heavy lifting). Doctor was willing to give him as much time off as he wanted but with no pay he needed to get back. 4th week was better and he has returned to work. At 7 weeks Hubby gets up only once at night and recovery is going well, he is sad for the way "life used to be" but enjoying the adventure of rehabilitaion! J

I know this is a men’s forum so hope you don’t mind the story about me.

BTW now his back hurts again want to find new career but that will mean new insurance. Is PC considered a pre-existing condition? Anyone have problems with that?

Promise new posts will not be so long but now you know. . .

8-4-09 Family Practioner for back pain PSA 4.9
8-20-09 Consult with urologist PSA 4.89
9-2-09 Biopsy 3 cores positive 7% 3+3 (6) gleason
9-22-09 Birthday turned 49
10-12-09 2nd opinion
11-13-09 DaVinci
11-23-09 Cath removed Path report cancer contained neg. margins
Feb 2010 wil be followup PSA


  • sjs2371
    sjs2371 Member Posts: 6
    Welcome to another female!
    Hi, I've been here on the boards reading stories and what to expect also. Hubby just had his robotic surgery 12/29 and goes tomorrow to get the cath out. I know exactly how you felt in the waiting room. It's a very lonely and scary experience. We moved a year and half ago for my job so no family in town. I also thought from what I had read that recovery would be quicker than it has been and less pain. Imagine what open surgery would have been like for them!

    I'm still adjusting to cancer being a "normal" part of our lives and the fact that we will have to live from one test to another and one bill to another. Sigh...
  • WHW
    WHW Member Posts: 189
    Welcome Once Again

    It's good to see you here. Your journey with your husband is certainly one that many who come here will be able to learn from. Thank you for posting it.

  • HIFUgal
    HIFUgal Member Posts: 58
    WHW said:

    Welcome Once Again

    It's good to see you here. Your journey with your husband is certainly one that many who come here will be able to learn from. Thank you for posting it.


    Sorry you went through such
    Sorry you went through such an ordeal, I hope it will all be in the past soon....

    but yes, PCa is a pre-exising condition....forever.
  • SmileyOne
    SmileyOne Member Posts: 2
    HIFUgal said:

    Sorry you went through such
    Sorry you went through such an ordeal, I hope it will all be in the past soon....

    but yes, PCa is a pre-exising condition....forever.

    Thanks for your comments. Welcome to sjs, am sure you have read that recovery post cath gets better each day.

    Thanks for the commentHIF

    Hi Sonny! Surprised you did not get my nickname first, not only your picture but your words are "smiley". *Big hugs* to you and your wife.