My Reflection

I remind folks reading this series of blog posts related to my own non-muscle invasive bladder cancer journey that these are reflections related to my own personal journey in 2014 and forward. Each individual may have a slightly different experience, or a drastically different experience in their bladder cancer journey. I am hopeful that my posts are giving some helpful insights into my own journey – which may in some respects be similar to what others are experiencing or have experienced. In many ways I was fortunate to have been diagnosed with non-muscle invasive bladder cancer. I was diagnosed early, got it out of there, underwent treatments with BCG (more to follow) and in my mind I have been all clear since my TURBT in 2014.

Between Diagnosis and Surgery

There was that period between being diagnosed with what was assumed to be two cancerous tumours and the date of surgery. My urologist also mentioned that one of the tumours was close to a ureter and could potentially be cause for concern on possibly impacting that ureter.

Seeking More Information

So…where does one turn after leaving the office of the urologist being told you have bladder cancer and your surgery is scheduled for March 24 !?

Telling Family and Friends

Firstly, my wife was always moments away walking in the park behind Sunnybrook “on the ready” to pick me up. She arrived at the lower level and naturally asked “how did it go?”. Well I said, I am diagnosed with bladder cancer. She said “what!”. At that point I realize that I know as much as her, except that I had the pleasure of going through the cystoscopy and actually seeing the tumours on the screen.

We proceeded home and onto the computer to assess what bladder cancer involved. Naturally I would not know the stage or grade or severity until after the surgery was complete, the doctor had assessed his work and pathology reported on the results. More to follow on that.

So…what does one do at this stage? Firstly, we decided that we would be very open with family and friends. This wasn’t something that I/we were going to hide from. However – we did fully understand what news that we were able to convey. I think that is important, because family and friends are likely to have more questions than you have answers.

Resources You Can Count On

I started with “Dr. Google”. Although many will say…don’t search on google, you will find all kinds of wrongful information – I started by looking for groups where patients were in conversation. I found the Inspire Network initially that is based in the US. It was fed off the Bladder Cancer Advocacy Network in the USA. Interestingly enough, when I connect with folks on the Inspire Network – they referred me to Jack Moon in Canada. Jack is one of the Co-Founders of Bladder Cancer Canada. Bladder Cancer Canada is the national patient support network in Canada. They have rich resources, patient guide books, backed up by a medical and research advisory board, peer to peer support avails and an ongoing discussion forum where patients can engage in conversation about their own story and challenges. NOTE – I am currently the Volunteer Chair of Bladder Cancer Canada…more to come on that.

After connect with Jack and finding all of the resources at Bladder Cancer Canada, I was more versed in all that I would be facing in the next stages of my bladder cancer journey.

I was also fortunate to have a friend at work who said that a close friend of his had experienced bladder cancer. We met briefly over coffee and he re-assured me that in his mind, me catching this early, was going to prove to be beneficial and that hopefully the tumours removed would be surface of the bladder and thus non-muscle invasive and not into the wall of the bladder that could result in more serious surgical procedures and possible removal of the bladder.

Rest up For Surgery

All of this said, by the time I vacationed with my wife and son in Aruba for a week, just prior to surgery – I had a pretty good feeling of being informed about what I was facing and the various possible outcomes that might ensue.

Bladder Cancer Canada

In Canada, by connecting with Bladder Cancer Canada, their people, the resources, their guidebooks,  the fellow patients, discussion forums…you will be ready to start your bladder cancer journey and moving forward along this path with abundant resources.

@FergDevins