Newbie-34 year old malT1G3 w/cis...scared to death

Thanks for all the thoughts and words of wizdom guys. I'm so glad I found this site. I'll definitely keep posting. Monday is going to be a huge day for me so I'm sure I'll have tons of new questions for all of you. I'm expecting to have the cystectomy word mentioned to me soon so start preparing your arguements.

How is it they have artificial hearts and limbs but no artificial bladders?
How can they have heart, kidney, and liver transplants but no bladder transplants?

I didn't notice any threads about sexual function after a cystectomy...is this too dreadful a topic to have a thread or did I just miss it? What happens down there? Do you just lose the ability to sustain an erection or do you lose all feeling as well? Is it blood flow loss or sensory loss or both?
Thanks again for all the help,
-Vin

See Vin-- the support and words of wisdom are already pouring your way!  

Everyone deals with stress, anxiety and grief in different ways.  Personally, I find that if I write and express my fears that they are not inside me eating away.  It is very hard for someone who exercises often to suddenly have that activity taken away.  It is a good stress buster.

The more time your mind is left to sit idle the more time it has to worry.  Try to make something positive out of your idle time.  Research everything you can possibly need to know about bladder cancer and you will feel like your decisions are right.  

If you feel you are losing sleep, can't concentrate, have a short temper, get agitated easily or are always sad please talk to your doctor.  Sometimes just talking to someone who will listen and not judge or interrupt or have an opinion one way or another is priceless.  Don't keep your lips zipped   :-X  Make sure your wife and your close friends know that you're scared.  They can't reach out and hug you if you put up a wall.  And you need lots of hugs right now.  

I said before I am the only one around here allowed to be a worry wart.  And there isn't room for another!!  ;D

Vin, I am so sorry you have to deal with this. :'( I was lucky with my situation but there were a couple of weeks the drs thought my bladder cancer had spread into my ovaries. As it turned out the ovary problem was a separate issue. I guess I am just saying I know the worry and anxiety. I can't imagine how hard this is for you but as I told Mrs C, I am sending positive vibes your way and I pray all turns out well for you. Trust your doctors, yet, stay on this site. Read and run your thoughts past these good people. The calmed my fears, not only with the bladder cancer but also with my other issues. Know you are in my thoughts. Sincerely, elaine the rugrat

Hi,

two small victories - steps forward - in 24 hours. NOT BAD.

Always look on the bright side of life You found this list and all these people who know how you feel - we ALL have those Black Dog Moments and it is learning to deal with them. This is the one place where we understand them 'co that goes with the territory!

Secondly you have discovered Mr. Woodie and Bubbles so if nothing else you can get a good deal on a fitted kitchen when you next move house. ;D

How to deal with Black Dog - well no one system works for all - I leave the radio on so that if/when I wake up I immediately get immersed in the talk on the radio. I don't sleep well as my stomach cramps every so often and I am restless.

Push yourself to learn something difficult or to write something complex. Read and research - I endlessly find medical 'stuff' I can't understand so I spend hour wandering around the internet looking for simple answers - but don't forget if the answers were as simple as the questions it wouldn't be called a Medical Practice - they would have got it right by now :-/

Keep posting and keep involved and when your wife wants to catch up or question don't forget there are lots of partners here.

You wanted small achievements well those were small but not bad for 24 hours - lets see if we can achieve something a bit bigger soon

Regards,
Greg L-W.

Hi all,
Thanks for the low down on the players Bubbles.
I just want to be clear that I have both tumors and cis unfortunately. I keep asking the Doc's how close I am to having to make the bladder decision and they say I'm not even close everytime. I think the issue is that they want me to complete a full 6 week BCG treatment before they put that decision to me.

The uncertainty of the outcome of all this is driving me crazy. What should I do about all the anxiety? It's like I'm dreaming when everything is going on during the day as usual then this big reality slap comes and reminds me of my current situation knocking me down into a paralyzingly depressed state that takes a while to pull myself out of. It just seems like it keeps getting worse. I just feel like one small victory would start to turn my head around but I haven't had one yet.

This forum is the best thing I've come across since the start of this ordeal. I'm putting alot of pressure on you guys now....how does everyone handle their thoughts of gloom and doom? Should I get meds? I usually exercise for an outlet but I'm still healing so thats out.
Please advise!
Thanks,
-Vin

Hi Vin

I just finsished typing and 8 million line PM to you and POOF! It was gone in a flash. It's not the first time I've had a Private Message issue.   :  Must be me!

Vin you are so in the right place.  I am amazed I have only been a member of this forum for something like 12 days----everyone here accepted with open arms and more importantly they have shared lots of experiences and words of wisdom.   [smiley=thumbsup.gif]

I am still learning so don't depend on me for many answers.  Greg is the One Man Show Comedian Wine Tasting Voice of Reason Extrodonaire........Wendy--Cruise Director (and makes sure we all get doted on), Rosie- Fact Finder and Spirit Lifter, Elaine -- Health and Fitness Guru, Lou--strongest biggest hearted sister anyone could wish for, WildBill -- I just love him because he loves me!  That's my psycological evaluation of the gang here.  The best people on earth!

Sorry you went thru the painful BCG treatments.  Ouch!  Now if someone could answer why Vin would be sent in the direction of BCG and not bladder removal as Mr C I would like to know.  Is it because Vin is CIS?

I'm hoping to go to Dana Farber for a 2nd opinion this week.  They have a 2nd opinion page where you can give your personal info and within 24 hours (excluding weekends) they will contact you to set up an appointment.  I was pointed in that direction by an RN Case Manager at work or had a physician there handle her loved one's bladder cancer.  She was very happy with the treatment and the care.

Keep in touch and make sure wife knows about all the wonderful info here!