Bladder Removal Saved My Life

Stock Life Saving

It’s been nearly three years since I made the decision to have my bladder removed and I don't regret a day of it. 

Okay, so maybe those first two weeks weren't great and I can’t begin to describe just how awful I felt and how I wished I had never had the operation, but nearly three years later I have adjusted and am so glad to have this extra time with my family. 

For me, the operation to remove my bladder was a lifesaver. 

Small cell bladder cancer had spread to my lymph nodes, liver, hip and both arm bones. Chemotherapy and radiotherapy helped shrink the tumour and cancer cells, but I still needed TURBTS (trans urethral resection of bladder tumour ) every four to five weeks. This procedure removes bladder tumours through the urethra - the tube that carries urine from the bladder to the outside of your body. 

The tumour debris would block my urethra and have to be scrapped out. 

I was in so much pain, I was given morphine patches to help dull it. I had ulcerations in my bladder which wouldn’t heal. All I could do was get myself up and rock on the couch and wait for my husband, Tim, to come home from work... and maybe sleep... if I could.

My life had been turned upside down by cancer, by chemotherapy, by everything. It was all out of control and try as I might I just couldn't cope with the pain. Some days were better than others.

I’d spoken with my oncologist about bladder removal and was told it wouldn't have much effect on the deactivated cancer cells within the bones and that sooner or later, they would be back. 

Tim and I decided that it was such a big operation we wouldn't bother if it wasn't going to save my life. However, sitting on the sofa in extreme pain, drowsy and drugged up wasn't my idea of a life so we made an appointment to speak to a bladder cancer consultant. 

After speaking with him we both thought that this would be for the best. I had six weeks to mentally prepare myself for the operation. For me, this meant not speaking about it or even thinking about it. My mentality was ‘it needs to happen’ - what more could be said? 

If you’re reading this because urostomy surgery is a possibility for you then I have a few things to share… 

You’ll likely be in pain, you may or may not have challenges with finding the right stoma bags, flanges, night bags etc. You may even feel apprehensive about seeing your stoma for the first time. I know I was! 

I asked the nurse, the very first time the bag was going to be changed, if she could stand at the bottom of the bed and watch me do it - but if I couldn't, could she jump in! I was surprised at how it looked, this enlarged, red cherry button, sat in the middle of a hole. And if you looked closely, it appeared to be breathing... this FREAKED ME OUT and it still does! 

Make sure you get good pain relief, if needed. You don't have to be brave and in pain, take the drugs and let your body heal. 

Your first ABR (after bladder removal) poop - okay, this I can only describe as a 'sensation' that you have absolutely no bloody control over. It falls out! And it sort of hurts. Enough said! You will eventually get control back but not for a while. 

Eat yoghurts and jellies, things that are easy to eat and digest, along with smoothies. You probably won’t want to eat a lot. 

And just BREATHE. You will heal, you will cope with having a stoma, you will be able to swim and bath. I take my bag off in the bath sometimes to give my stoma a bit of air every now and then. 

There are things I didn’t do that I wished I had when it comes to my urostomy:

  • I should have asked more questions about sex after the bladder removal.
  • I should have been a bit more prepared and read the leaflets.
  • I should have taken more time in hospital and not been in such a rush to get home.
  • I should have asked for more help.

One thing that I would suggest is that you really listen to your body after the operation and take time to let your body heal. It was around eight months before I finally felt like ‘me’ again and yet there was a lady opposite me in the ICU who was walking around like she hadn't just had a major operation at all. I guess the thing to remember is that we are all different, we all feel pain differently and we heal when our bodies are ready to heal. 

We now know that if hadn’t had my bladder removed, I would have needed chemotherapy again within months, as they removed a lymph node filled with cancer cells... that’s why I always say having my bladder out saved my life!

If you are thinking about having the operation or have been told you will have to have your bladder removed, please just think of it as an adjustment period and that life WILL resume as normal and remember, be kind to yourself.

Want to learn more about living with a urostomy? You can access help and advice through our stoma care section, read more urostomy blogs from the community or download one of our information booklets.

by Anita Brown

Anita Brown

About the author

Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.

I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.

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