When All the Information Out There May Be TMI!
I had an RC/IC (radical cystectomy/ileal conduit) in September 2014. I don’t think about my bag and it has become a natural part of my life. I chose to have RC a short time following my diagnosis and did some research on my particular cancer but not a great deal in depth. One of the first things my medical team said to me was not to overdo the research as it can be detrimental.
My goal was to be cancer-free no matter what
I spoke to and met with people who had RC/IC and they were doing well and were very active. I knew I was having my bladder out along with other parts, but my goal was to be cancer-free. I am the type of person who stresses over just about anything. If things are going fine, I will find something to stress about.
I did not find out the specifics of a radical cystectomy and did not ask for details. I felt I had all the information I needed and completely trusted my surgeon.
A different surgery was on my horizon
Fast forward 5 years and I was having hip issues. After the required physical therapy and cortisone shots, my hip was no better. As a very active person, I did not like how my weakened hip was impacting my life. Finally, my doctor said that I needed to go bionic and have a hip replacement. I did a bit of research for the procedure I was having but not much.
Joining online sites to learn about others' experiences
I joined some online sites on Facebook to see how others fared with the procedure and follow up. Yikes - the negativity was scary. Clearly, too many of the posters had waited for years to have surgery and were using wheelchairs and walkers. Some said that the surgery was horrible as was recovery. I do understand that like anything, we tend to hear more of the negative versus the positive but this was really starting to bother me, so I removed myself from the sites.
Attending a required class on joint replacement
A few weeks prior to my surgery, I found I was required to attend a class on joint replacement and if I did not attend and provide proof of this, my surgery would be canceled. One rainy Tuesday night, I found myself in a small room at a local ortho hospital among several people of all ages who were having hips, knees, or shoulder joints replaced. There I was, innocent of what was to come, sitting quietly with my bag of pretzels and bottle of water.
For me, it was TMI (too much information!)
Well, let me tell you that we spent 2 hours being shown exactly how the surgeons get to the old joints, remove them and pound the new ones in and secure them with gorilla glue or something similar. Though I had heard about some of the details of replacement procedures, I did not want or need to see the video of this. I took my signed certificate - never to be framed and mounted on the wall for sure - and left as soon as I could. I could not get the video out of my mind and wished I had not seen it. I did not see that it had any value and if anything, just caused unnecessary anxiety.
Arriving for my hip replacement surgery
On the day of my surgery, I arrived with everything needed for my 24-hour stay. I presented my certificate only to be told that I really did not need to go to that “required” class but doctors want patients to understand what they are in for. Well, that really bothered me. I had no interest in all of this very graphic information. I would have been perfectly fine being clueless about the surgical procedure and did not very understand the purpose of basically threatening us with the cancellation of our surgery if we did not attend.
My surgery experience
My surgery went very well and I missed only a week of work. There was not one single thing I learned in this class that made my procedure or recovery any easier. Some people find it helpful to find out anything and everything they can about something going on in their lives and that certainly is their choice. I prefer to only deal with those portions that are necessary and beneficial to me.
It's possible to over-research and scare yourself with negatives
As someone who speaks and communicates with other bladder cancer people regularly, it is clear that some dig very deep into treatment, procedures, etc. I read from people who still have their bladder how horrible life is without one, how long the recovery is, etc. This bothers me because I believe that too many people take that information and decide they will hang onto their bladder forever because they will not have a life if they do not. Well, I am here to tell you that if that is the case, I need to quit working 2 part-time jobs, volunteering for the - get this - senior outreach program at the local police department, etc. at age 70. My having my bladder out has not slowed me down at all and my life is pretty darned good. I am forever grateful that I did not over-research bladder cancer and radical cystectomy or possibly I would not be where I am today. Cancer-free!
Have you talked to your doctor about navigating sex with bladder cancer?