Woman sitting holding a bladder with tumors in it in one hand and looking at her other hand which is holding a urostomy bag

Anita - 1, Bag-Life - 0

Last updated: January 2021

This year, it will be two years since having my bladder removed and although at the time I thought I had made the worst mistake of my life, I am now learning to love it and live with it. It doesn't have to stop you doing what you want to do. It doesn't stop you from swimming or exercising; in fact, there is nothing I can't do now that I couldn't do before the operation. Okay, so you may have to jiggle things around or try a new way of doing things, but the important bit to remember is that anything is still possible.

Why I chose to have my bladder removed

My choice to have my bladder removed wasn't due to the cancer. It wasn't to make any difference to my diagnosis. It was because of pain, unbearable pain. My tumor had continued to grow, and it felt like every 6-8 weeks that I was back at hospital having yet another TURBT. Debris and yucky stuff would be constantly peed out.

I was unable to pee

At one point, my ureter became blocked with bits of tumor and one bit, in particular, was still attached to my bladder. This made for a very fast trip to the hospital as I was unable to pee. I don't know if any of you have experienced this but my goodness, it was so uncomfortable.

Nighttime spasms and urgency

I had the feeling of wanting to pee, I could feel my bladder spasming and yet, when I went to the toilet, I would push so hard and only the tiniest of dribbles would come out. I tried to go back to sleep and again the uncomfortable spasms would reappear, and I would feel like I was busting to go and pee. Isn't it funny how these things often happen in the middle of the night when there is nothing you can do about it?

I had to have another TURBT

These feelings happened over 8-9 hours, and I was beside myself. The pain was beginning to get really bad. I didn't want to wake my husband but at 5 AM, I had to. I couldn't take much more. He wanted to take me to emergency department straight away, but I, ever the optimist, was hoping that it would all sort itself out the next time I went to the toilet. That didn't happen, but what did happen was that I had my lovely Urology Nurse pick bits of tumor out of me, with big plastic tweezers - until she got to the bit that didn't want to let go of the bladder, so another TURBT was had. (This is one of the worst moments of my journey).

The pain was getting unbearable

So, long story short, I was told that I couldn't keep on having TURBTs as there would come a time when I would be unable to have them anymore. So, what was I going to do? That's when I made the decision to have the bladder removed. There were ulcerations in there that weren't healing, and the pain, even on a good day, was getting to the point where I was taking strong painkillers daily, leaving me unable to live my life the way I wanted to. In fact, I could barely make it off the sofa some days.

The bladder removal operation

Oh gosh, so the operation itself - well, you don't know much about that but when you wake up, you feel like you have been hit by a bus... a really big bus. They get you up and about walking the next day, and this is so important, but getting up out of the bed was painful. I could walk to for miles once I was up, it was the getting out of bed bit that was difficult.

Learning how to deal and cope

For me, the next few months were painful and frustrating as I continued to heal. I think I can remember around the 8-month mark finally feeling much more like me again. You see, you have to deal with so many things when you are healing: learning how to deal and cope, emotionally and physically with leaking bags and wet beds at 2 AM. But learn, you will!

Your confidence will grow

There may be a whole minute of the day where you don't think about "having a bag." A moment where, for that split second, you are the very same person before you had your bag. And before you know it, that split second becomes a minute, that minute becomes an hour and before long, you get to the stage where it doesn't "control" you anymore, YOU ARE IN CHARGE!

I am living my life

Who knew that that day would come. For me, that day has arrived. I sit down while writing and get so engrossed I am NOT rubbing my hands down my front, checking my clothes for wetness and the bag, to see how full it is. My mind isn't constantly telling me to "check, check and check again." I am living my life.

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