By Enid R.
I never imagined I’d be part of a cancer story, especially since cancer wasn’t in my family history. Yet here I am, six years cancer-free, a survivor of bladder cancer sharing my story with you. Looking back, every moment feels vivid, like it happened yesterday.
The Discovery:
It all began in January 2017 when I noticed blood in my urine. I brushed it off as an anomaly, but when it happened again in February, I started to think it was perhaps the end of menopause, so I brushed away any concern. I told my daughter about the recurring blood in my urine, and she urged me to seek medical advice.
I went to my family doctor, and they had initially reassured me that there was nothing to worry about, but after a series of tests, I received a life-altering phone call on May 8th, 2017, 4:30 PM. My doctor informed me I had bladder cancer, and my bladder needed to be removed.
The Treatment Journey:
It took four months for treatment to begin. By then, my urologist suspected the cancer had spread beyond my bladder, putting me at Stage 4. I started a grueling three-month chemo regimen on September 1st, 2017. On December 12th, 2017, I underwent surgery to remove my bladder and was given a neobladder, crafted from my small intestine. I had the choice of either a neobladder or an ileal conduit but chose the neobladder as it fit better with my lifestyle. It wasn’t guaranteed, all dependent on if the cancer had invaded my ureters or not. A neobladder is a pouch made from your small intestine and placed where your original bladder was. I wouldn’t know until I woke up what I had received.
Recovery:
Waking up from surgery, I eagerly checked my stomach, relieved to find no bag, which meant I had received a neobladder. However, training it to function like a regular bladder took years, not the two weeks I was initially told.
It did take quite a while to train to be able to go to the bathroom like before and I did have to go through a lot of frustration in constantly being wet, wearing Depends & a #6 pad at night. I was still happy with my choice and never regretted anything. After several years, I finally reached a point where I had trained my new bladder to do what it was supposed to do. Unfortunately for me, I became very susceptible to UTI’s. This was because I wasn’t able to empty my bladder fully of urine. The urine was causing bacteria to form and would back up, causing regular UTIs. This is rather uncommon, so I guess I wasn’t the luckiest!
I made use of many YouTube videos to learn how to “Self-Cath”. This took some patience, but now I can Self Cath in a matter of minutes and most likely can do this quicker than most people pee normally.
Paying It Forward:
Despite the challenges, I embrace life fully. I have no regrets and I can do everything I was able to do before. Today, my life is full of family, travel, golf, gardening, yoga, and weekly Eccentrics classes.
Because of all the support I received from family and friends, I wanted to do something to “Pay it Forward” to other bladder cancer patients and hopefully help educate the public on bladder cancer.
I am part of the Bladder Cancer Support Group here in Edmonton, help organize and participate in the Canada Walks for Bladder Cancer in September, and most recently have become a Peer Support Volunteer to talk to people, family and friends that have been diagnosed with bladder cancer and offer support, suggestions and talk about my experience. I never give medical advice; sometimes I just listen to their stories and hope that the person feels a little better emotionally after talking to me.
I feel it is so important for people that have gone through bladder cancer to talk about it. The medical teams do the best they can but have no idea what it’s really like to go through. I wish that we, as survivors, could reach out to more people that have recently been diagnosed, or to family and friends of those that have been diagnosed to help them understand what they can do to help. While this can be a devastating diagnosis, it will become your new normal and your life will get back on track.
It will get better!
