A man looks up at a bladder shown on a floating screen with multiple warning highlights on it.

Calling Time on Your Bladder

Last updated: July 2022

I sometimes wonder if I’m standing alone when it comes to the choice of removing your bladder to avoid any chance of your cancer spreading. I have huge respect for all those diagnosed with bladder cancer who have had this life-changing procedure, whether by choice or necessity. After being diagnosed with bladder cancer, I was sat down like all others after given this dreaded news and explained the options for treatment. The removal of the bladder was an option mentioned, and at the time, my response was that no organs would ever be removed from my body whilst I was alive.

Dealing with numerous bladder cancer recurrences

I am three years into my cancer journey, and I have yet to rid myself of the cancer that keeps recurring, but I continue to feel exactly the same about the removal of my bladder. I continue to remain hopeful that my current treatment of BCG will eventually take a hold of my cancer and keep it away. But of course, the more my cancer keeps returning, the bigger the risk can get. There are those diagnosed with bladder cancer who did not have the choice of whether their bladder should be removed and others like me who are left with having to consider making this choice.

Unwilling to undergo such a life-changing surgery

I am 53 years young and fully active and have yet to be convinced that I will be in a position to continue doing what I currently can do after such a life-changing procedure. Removal of your bladder is terminal, which means no going back. I struggle as a human being to accept that anything needs to be terminal and strongly believe there is always a way to overcome adversity.

Asking the head of the urology department about my options

During my last TURBT, I asked to meet with the head consultant of my urology department, and whilst being prepared for surgery to remove the latest tumour, I was paid a visit by him. I explained how hard I’d been trying to help rid myself of the cancer by changing lifestyle, diet, and the natural products being consumed. I asked what more could be done and if there were any other treatment options. The consultant went through a couple of slightly more invasive options and ruled them out. He then stated that outside of BCG, calling time on my bladder was the only sure way to prevent the cancer from returning.

Removing my bladder is not an option for me

My response to this was instant and definitive, which of course was, "The removal of my bladder would never become an option for me." I was left feeling extremely disappointed with the response from the head urologist on my options and very let down by an important person within my life. A few days after my surgery, I continued to analyse what had been discussed with my urologist and was not surprised by his response, based on these facts.

My bladder is just another bladder to this doctor

My bladder to the head of a urology department is just another bladder amongst thousands of other bladders that he will come across over the years. The removal of a bladder is just par for the course and sadly, for the surgeon, just another procedure. I don’t doubt that this urologist is very good within his centre of excellence, but not once as he ever, or will he ever, ask me how I truly feel about my cancer and the life I wish to live. Based on this lack of questioning by my head of urology, I took it upon myself to write him a letter explaining who I am and how I conduct myself in life.

My letter to the head of urology

The letter read as follows:

Dear Mr. M,
My name is Noel Forrest who you will only know as patient number NH0144643. I would like to explain a little bit about me so you can fully understand the type of person you have in your care. I grew up in a very poor family within an even poorer area. I struggled for many years to understand myself and those around me, and as a result, made some very bad choices growing up and suffered some huge consequences. I never once looked for an excuse to justify my behaviour and took what was rightfully deserved as a punishment.

Turning my life around

After many years of self-destruction, I eventually in my darkest moment found a sliver of hope and grabbed hold of this. I put myself through drug and alcohol therapy and, once clear in thought and enlightened on the beauty of life, decided to go back to school and learn. I studied for 3 years and walked away with a BA honours degree, first class, and took a job helping those less fortunate in life.

Living an incredibly active life

I continued to gain more knowledge through learning and qualified myself as a mountaineer, climbing, and kayak instructor, which enabled me to help younger people in a way that I would have benefitted from, which would have saved me a lot of unnecessary pain. I’ve been headhunted for jobs within local and central government that all follow the same pattern, with me helping others less fortunate. In between helping others, I have created my own loving family and friends, and I’m actively doing and love many outdoor pursuits, such as mountaineering, rock climbing, kayaking, skiing, and soccer to name but a few, and I race cars and motorbikes.

Refusing to give up on anyone

As you can see, I choose to live! I’ve never given up on anybody, even if they’ve given up on themselves. And in my darkest moments, I’ve always found a way to get through and continue to live my life based on this philosophy, which is to never give up. Calling time on my bladder will never compute to a person like me, and if this is too difficult for you to understand, then I plead with you to refer me to someone that can relate. The person in your care writing this letter to you is more than just a patient number as I’m sure you are more than just a urologist.

Seeking the care I deserve

This letter was sent, and I have yet to receive a response but did receive a telephone call from the head of urology’s personal secretary acknowledging my letter with the promise of a response in due course. Although a response from my urologist is important, this will not influence or hinder my objective, which is to receive the best possible care and treatment I deserve. I have already taken the steps necessary on getting a referral to a more reputable institute that solely focuses on cancer alone and are pioneers in cancer research and treatments.

Fighting to keep my bladder

I intend to fight and keep my bladder, and I want those professionals who are charged with making this possible to be fighting alongside me with a clear understanding of what I would like to achieve. Of course, there are no guarantees that any new treatment will change the course of my cancer, but I would like to believe that everything that could possibly be done to save my bladder was attempted, as calling time on my bladder will never be uttered by me!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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