Hi ... I'm a survivor of CIS (I'm in my 3rd year post RC/neobladder) -- i think you've really found the key to fully living with this thing. Attitude is so important -- I think that the messages we give ourselves have an enormous impact on how our bodies respond to the stress of our illness. I try to stay in the moment -- if I'm feeling okay --I try to tell myself life is great (one of my favorite sayings is "everything will be okay in the end ... if its not okay, its not the end"
I've been through some challenges in the past three years including losing a kidney and an additional surgery to repair a fistula between my small bowel and neobladder. There were days where it was hard to see where this thing was taking me. I found that living in the present helped me stay focused on what was right in my life which gave me less time to worry about what might be wrong. Life gets sweeter every day -- I've learned to live fuller and love more.
I too worried about overwhelming my spouse (as well as my friends) with my bladder cancer -- interestingly, my husband is facing shoulder replacement surgery in March and was concerned about how much he was going to have to rely on me. When I reminded him of all the support he has so willingly given me over the past three years he was surprised ... it hadn't seemed like a burden to him in the least and i don't think he still realizes how much I counted on him.
"Everything will be okay in the end.
If it's not okay -- it's not the end."
I was diagnosed with bladder cancer in 1998 at age 45. I have a 9 year history of it... 3 TURBs, two rounds of BCG (6 wks), maintenance BCG to come, and too many cystoscopies to count. It started out low grade and progressed to high grade.
Don't be concerned about becoming emotionally dependent on your spouse. Just be very glad you have her. Going through this all alone, even as far as driving myself to the hospital for TURBs and then having to figure out how to get home because I wasn't allowed to drive home myself, has been rough. You're probably not used to being dependent on anyone, but if you need help during the stressful times, emotionally or otherwise, take it. Your spouse is doing for you what you would do for her if roles were reversed, right?
I've found volunteer work makes me feel better -- helping others when I can. And communicating with people in similar situations on this website is helpful. I also feel better when I stand up to the medical establishment when I'm not getting the service I deserve, the answers I deserve, or the consideration I deserve. I feel like, when I am persistent about getting better treatment, I'm standing up for ALL patients, not just for myself. Finally, for a couple of months in 2000 and now just starting again, I've been in a cancer support group. Those people have been very inspirational to me. Being in a group of people who understand your feelings about what you're going through is amazing.
I hope that I have helped at least a little, relating what has helped me a bit.
I'm a 49 YOM with a recent diagnosis of CIS. I've had a CT, 2 cystos and a TURB and will probably be starting BCG in the next 2 weeks. I've been able to find a substantial amount of info on the clinical aspects of BLC and CIS and I'm slowly educating myself with the help of my Urologist.
With a growing knowledge of what may and does lie ahead I believe that finding ways to maintain as good an outlook as possible are critical to the quality of life I lead. Light to moderate exercise, getting outside for walks and finding some time each day for relaxtion seems to help. I'm also concerned about becoming too emotionally dependent on my spouse.
I'd love to hear what has worked for other people.
Thanks - gcurt
Dx: CIS 12/07
Happiness is not a station you arrive at, but a manner of traveling.