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Day 15 Post Cystectomy

12/5/2019

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I called my doctor's office right after 8am and told them of my 3 concerns.  They said they would have someone call me back.  So now came the waiting game.  Well, while waiting, it was time to take a shower!!  I remembered my last shower left me feeling like I was going to pass out, plus my shoulders were still killing me after standing for very long, so it would probably behoove me to have a shower chair!  I called my neighbor to see if she had one, which she didn't, but the place she used to volunteer did, so my dear husband drove there and picked it up for me, brought it home, cleaned it up, and put it in the shower!  I took one of those big thin skin clear covers and put it over the top part of my urostomy bag, and then proceeded to have the BEST shower in recent memory!  It felt SO good!  Another thing I wish I had known/thought of ahead of time - shower chair!!  And then, I was able to just go to my closet and select another dress from my friend and proceeded to cover my body with it - so thankful!  It was a little wider than the others, so Tim helped me by gathering it in the back and using a brooch pin I found to pin it together a little so it fit better.  What do you think?  Not bad, eh?  My home health care nurse called me and said he knew I was scheduled for tomorrow, but asked if he could come today.  Sure, no problem!  So he showed up around noon and just took my vitals and asked me some questions.  I thought for sure we were going to change my bag, but he said I should try to make it last until he came back on Monday which would be a week - that it would be better for my skin to not change it so often, plus it would be economical.  Uh, OK.  I really wanted to change it, but I figured he knew better, so that's where we left it.  I told him about my shoulder pain, and he said he's seen that before when the JP drain gets removed.  He said something about our bodies are typically in a state of negative pressure, and when we have a hole in it and then close the hole it messes up the pressure until our body can stabilize, and sharp shoulder pain can be one of the symptoms of that.  Facinating.  I couldn't find anything about that on the internet, but it made sense to me.  Thankfully, the pain finally did subside as the day wore on!  So it took about 24 hours to resolve after initial onset.  Maybe this information will be helpful to someone else out there who experiences this!  Anyway, I was still waiting for the doctor's office to call me back, so by 4:30 I started calling them.  I called them 4 or 5 times before I was able to speak to someone (my doctor's nurse) who said the doctor said the shoulder pain is unrelated to my cystectomy (what?), that it's ok my vaginal draining stopped, and not to worry about my stent pulling out.  I honestly felt pretty dismissed.  I definitely believe my sharp shoulder pain was related to the JP drain removal - is it that rare of a thing that my doctor didn't know about it?  I'm honestly happy with the lack of vaginal draining as long as there is no problem with it - maybe it had to do with the negative pressure thing?  But the stent thing is still bothering me.  Still not feeling comforted with just being told not to worry about it.  Oh well. We'll see.

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