Life After Bladder Cancer: Taking Time to Process
Last updated: February 2023
I am four years on from my cancer diagnosis and surgery. I am, as of today, still cancer-free. I always say you are only as good as your last scan.
For four years, yes - I have gotten used to living with two ostomy bags. That doesn't mean there aren't hard days, but practically and mentally, for the most part, "I have got this."
Yes, I am also comfortable with talking about what I have been through and raising awareness about bladder cancer and living with an ostomy. Yes, I am comfortable saying, "I had bladder cancer". However, there is another part to the tale.
I'm not a victim
I still feel, in a sense, I am defined by that day. That day I was told I had bladder cancer. The day, which, really did change my life forever.
That's not to say I feel like a victim of bladder cancer, nor do I have a built-up resentment of what I have been through. That's not the case.
More than I feel, in a sense, it is always there in the background and always will be. It's hard to put my finger on it exactly.
I think the fact I am reminded daily, several times a day, each time I get to the bathroom, of why I have 2 ostomy bags prevents me from forgetting it completely.
To the last detail
I have always liked to be in control of things, and those two basic human functions are now out of my control. As time goes on, my illness is the hardest "legacy" side effect that still plagues me at times.
I feel that I (often irrationally) want to control everything in my life. Not just things immediately within my remit at work or, indeed, my responsibility out of work but almost everything in my life that I "touch" or touches me.
I want to organize everything my husband and I do, down to the last detail.
Processing life with an ostomy
In a sense, this started soon after my diagnosis and the project manager in me kicked in, and I started to take control of my own journey and advocate for myself. It gave me a glimmer of normality. In a sense, in some small way, in my world, which felt like it was spiraling out of control, I could regain and retain a little control.
I think being able to look at this (slightly objectively) of recent times is the fact that my desire and almost demand to control everything around me has come to the fore.
I have recovered physically and, for the most part, mentally. I can see that some of this behavior is hard for those around me. At the same time, I understand why I feel like this.
It is my way of compensating for the control that I feel I have lost, living with two stomas.
Re-aligning and finding balance
Now, it is important for me to re-align the balance. To realize that I don't need to compensate. In fact, I can't control completely when my stomas will work, but I do and can influence this through diet.
I can't control completely when my stomas may leak, but I can influence this through an informed choice of stoma products.
Time to process your bladder cancer
If you find yourself in a similar situation. Talk it through with those closest to you. Explain how you feel. Take some time to process your feelings and, most importantly, be kind to yourself. You have been on quite a journey.
While the merry-go-round in the epicenter of your cancer journey may have stopped spinning, you haven't quite jumped off yet. Things will still hit you without any warning and you need time to process this. It took strength to get here. You have got this too!
Tell us about your experience in the comments below, or share your story with the community.
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