Miss, I remember the days before my RC the waiting was the worst and not knowing what to expect. I tried to keep busy and not obsess every waking moment but sleeping was hard and I can’s say that I was very good at not obsessing. The day of surgery I was oddly calm and then I was in recovery. I remember being told that the more I walked the sooner I would get well and I walked because getting well was the reason for doing all of this. I remember finally getting the last tube out as I had had an Indiana pouch and how relieved I was. I remember the first time I had the catheter in my hand and I looked up into the mirror seeing the incision the stoma and I cried. But as the days, weeks and then years passed the incision healed the stoma became a part of me just like my birthmark or the mole on my knee. Life returned to normal I knew the ins and outs of my diversion and I found that it really didn’t change my life as much as I thought it would. Ten years out I would do all of it over again if I had to. For you see I kept walking and I did get better and that was the reason for the diversion. The cancer behind me I have seen children marry, held my first grand child (#2 is on the way), we renewed our vows and so much more. It wasn’t easy and there were bad days but day by day I kept my eyes on my destination to getting to the other side to enjoy the second chance I was being given. Keep your eyes on the prize, know its ok to feel down or frustrated or just darn mad at times but also know that the day will come that the healing and the learning will be behind you and without even realizing it is happening you feel normal again. As for going back to work talk to your doctor I was a Realtor so going back to work would have happened for me sooner than say a brick layer. I had my RC in May and in August was dancing at a wedding to Wild Thing and joining a conga line.
Hope this helps a little bit know we are here for you and please keep us updated.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Last edit: 9 months 4 weeks ago by Cynthia.
The following user(s) said Thank You: JIMG4, Scared
While I have not had a cystectomy I am sure that some have will kick in. I can offer the fact that I am glad you have chosen life! I am sure you have friends and family to live for besides your self. One day at a time, you will be stronger and more effective person coming out of this.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The closer I get to the actual date, I'm feeling overwhelmed - with emotions, with fear, with how much to tell who, with worrying about going back to work, the list can go on. I'm trying to take it one step at a time, and right now I'm focussing on how I'm going to accept the fact of having a bag on my stomach and the stoma (which is not a pretty sight from what I see). I'm worried about the recovery and how hard it will be. I'm hoping that finding this sight will get me through each step. Thank you all for being here for me!