so tired

13 years 4 months ago #35005 by Melodie
Replied by Melodie on topic so tired
Julie,

Mike is right...you are doing great! I was tired for weeks and weeks, in fact months. I think it was like 3 weeks before I felt I had the energy to walk around the block and I would not even have attempted to drive. I didn't drive for nearly three months.

And it is just as Pat said...you think you are tired now...wait until you begin training that sweet new bladder...it is quite a challenge but set your mind to it and you will do it. I just kept setting an alarm clock so I could keep the pace and I never felt rested. But it is only temporary. Be patient with yourself. In time you get the bladder trained and life gets easier. And then, you feel so very proud of yourself :) ...and your new bathroom habits become a routine.

If you haven't gotten my card yet, it was to let you know you wouldn't be able to reach me this week. I decided to go back to visit my friends at the hospital...surgery on Tuesday and if I'm lucky they will turn me loose over the weekend. I have two good surgeons and will be just fine...it's just another bump in the road for me...and something else I can add to my website.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 4 months ago #34997 by mmc
Replied by mmc on topic so tired
Julie,

Heck no!!! You are doing GREAT for where you are in the recovery process. You are already COOKING!?! Wow! That is ahead of the curve for sure. Most of us weren't making much of anything and needed help with darn near everything.

You should be PROUD of how you are doing!!! :D

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 4 months ago #34994 by mamatrausch
Replied by mamatrausch on topic so tired
thanks for your support I have been feeling scared and like a failure because it seems like all I manage to do is cook some eggs and then sit and watch Tv very little walking. Pat Im glad you said 6-8 months because lets face it the docs say 6-8 weeks My nurse said go ahead and go to walmart or shop. Oh my god I couldnt think of going to walmart unless my husband pushed me in a wheelchair. Pat maybe I will be successful with the every 2 hour schedule since I have turned into an insomniac. I seem to be producing lots of urine so Im sure I will be cathing often. Im a little nervous about the pouch and hope I will get the hang of it. I will be asking you pat lots of questions melodie too. Bless you all for your experience and time to reply to all of us newbies.
Love julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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13 years 4 months ago #34988 by Patricia
Replied by Patricia on topic so tired
Well yeah! The anesthesia is enough to knock you out for several weeks alone. You must not drive until all tubes are out of you. And if you think you're sleep deprived now wait until you start having to train your new bladder. Every 2hrs for a week to empty, every 3 hrs the next week, to 4hrs the following week, and then play with it a bit but never let it get past 600cc's. You cat nap when you can. As far as strength they said 6 to 8 weeks.
I'd say 6 to 8 months realistically. I was feeling like such a failure when i went to visit my internist and he made me feel a whole lot better when he said to be a little bit more realistic about full recovery from such a major surgery. This is just a little bump in the road but we all had to go through it. Some bounce back faster but hey its not a contest. Set your own pace.
pat

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13 years 4 months ago #34984 by motomike
Replied by motomike on topic so tired
I joked that it was as if my butt was nailed to the sofa! As a gardener it was difficult to see many of my potted plants just needing water and not be able to generate the energy to deal with it. I hired a guy to cut my lawn telling him it would only be for a month or 2. It was 6 months! I’m now slowly regaining perhaps 80% of my pre op activity level. I have a date with my surgeon latter this month to discuss this, erratic sleep and bowel. In all fairness I was having bowel problems prior to surgery. Friends tell me I’m 70 (like I need reminded) but I’m not satisfied with 80%.
I envy you that you were up & walking almost a week ahead of me. I was stuck in ICU for 3 days. Keep up the good work. You are inspiring. I watch for your posts.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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13 years 4 months ago #34983 by CatherineH
Replied by CatherineH on topic so tired
Hi Julie... Sorry you're feeling so tired, but I think that is a normal part of the recovery process from a very serious surgery like you had. Your body has been through a lot and needs some time to bounce back.

I only had a partial cystectomy which was much less invasive than your procedure and my post-op instructions said specifically not to drive for two weeks. Even though I cheated by a couple of days since I was not on any meds, I think that was smart advice not only to avoid any unexpected bumps or being jostled, but suppose there was even a slight fender bender that would cause the airbag to deploy. Would not be a good thing, so caution is warranted.

Lack of sleep really causes tiredness also. I've had severe insomnia for over 8 years so I'm tired most of the time. That being said, it was even more difficult to sleep when I came home from the hospital due to the catheter and having to sleep on my back for several nights until my incision started to heal, and having to get up to empty my night bag. It felt soooo good the first time I was able to turn over and lay on my side. I didn't walk my dog until around the 4-week mark due to possible tugging by my little 20 pound furball.

I sincerely hope you are feeling more rested soon. Take care of yourself and don't push too hard. Walking is good and promotes healing, but go at your own pace.

Best wishes... Catherine

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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