Life With A Urostomy - Two Years On

Anita Camping

I had my bladder removed in August 2017. 

But it wasn't because of the cancer, it was because of the unbelievable pain I was experiencing every day. I was on Oramorph which did help dull the pain a little, but it didn't fully take it away and the pain medication left me barely able to function. 

My days consisted of rocking back and forth on the sofa, it wasn't much of a life at all. 

A decision had to be made and only I could make it. If I’m honest I didn't weigh up any of the pros and cons, I didn’t think about it, I just knew that with the limited time I had left, this wasn't how I should be spending it. 

Choosing a urostomy turned out to be the BEST decision I have ever made… 

Even though two weeks after the operation I really had thought I’d made a terrible mistake. Recovery was a lot longer than I had hoped but with each day that came I gradually became stronger, more like myself. My biggest achievement was seeing the Foo Fighters live at the 02 exactly a month after stoma surgery.

So what have I been up to in the two years since? 

I have had so many amazing moments; speaking at the Houses of Parliament at the Macmillan Coffee Morning, as well as speaking at the All-Party Parliamentary Group on Cancers Conference. What a fabulous experience and I still have to pinch myself, little old me, Anita Brown, speaking in front of people, who would have thought it?

I often focus on the psychological and the emotional impact a cancer diagnosis can have on your mental health (because believe me, it is trying at the best of times) and I’ve taken part in a focus group discussing how we can help to improve the NHS guidelines and implement a change in how women are treated throughout the ‘radical cystectomy’ (bladder removal) journey. I mean, how amazing is that? 

We discussed the lack of information for women, especially compared to men, about sex and how your sex life changes after having your bladder removed. That isn't me being sexist in any shape or form, but I guess it has something to do with the men having their prostate removed when they have their op.

It appears that women just don't get any information about sex after surgery, or if we do, it’s only briefly mentioned. 

Would you know what questions to ask? I had no idea it would change my sex life or even my vagina. Sex certainly wasn't on my mind after the op and it was about a year later that I finally felt like having a ‘snuggle’ with the hubs. Before that there was no way I felt well enough or even remotely sexy. As, women, we have to deal with the changes in our bodies, including how our vaginas change after the op. I had no idea about any of them (other than the obvious ones like a stoma and a pouch), so it came as a huge shock when our ‘snuggles’ didn't go as planned. 

Another focus group I took part in was about the psychological effects of living with advanced cancer. 

This is something I feel incredibly strongly about. I have found the emotional effects worse than the actual physical treatments, and I guess just like we need to take time to let our bodies heal, we must also let our minds heal and adjust to the trauma we have faced.

Due to the fantastic research being done we are now living longer with advanced cancers and we need to start providing better after care for those who need it. 

You can’t go through a life changing event without it affecting your soul. We need to have trained professionals to help deal with these consequences. I have struggled a lot over the past three and a half years with my mental health, I have lost count of the breakdowns I’ve had, the moments of uncontrollable sheer hysteria, the not knowing how to regain my place back in the world, the “How do I live when I am dying?” dilemma. 

It took me a while to realise that it’s okay to need a bit of extra help and that it’s okay to feel completely overwhelmed and whilst we think we are the only ones going through this, research is showing that at times, we all are struggling and that it is perfectly NORMAL to feel this way.

These focus groups will hopefully help to set guidelines for the future, raise awareness and to provide the help that is so desperately needed.

On a personal note, I am loving being a nana and a step-nana. Jackson James is our newest addition – my son’s son. Heading towards five months old, he has such a cute smile and has started to giggle. There is something so beautiful about children giggling, it makes me feel all gooey inside. Kane and Rowan have just gone back to school and they both looked so handsome in their uniforms.

The Hubs and I are going camping this weekend, with Sherlock (our dog) and we can’t wait. I can’t wait to sit in a field, listening to the sounds of the woods, toasting marshmallows and chilling with the one person who I love with all my heart and there’s no doubt we’ll come back with a hysterical tale or two because nothing ever goes to plan for us!

We are trying to get organised - the Hubs is going to do a list which I will ignore, as he will have written down ridiculous things and won’t have thought of the essentials. As long as there is beer, the Chopper McGraw and a fire, he will be as happy as a pig in poop!

Me? Well… I will be taking my kaftans and thick socks, chocolate, super noodles (I seriously love these), coffee and a good book. It’s a weekend of doing nothing… bliss!

*If you’re seeking help and support after stoma surgery please take a look at our Stoma Care section where you’ll find plenty of information including tips for resuming your sex life after surgery. If you’d like to talk, contact your Stoma Care Nurse. If you don’t yet have one, please give the SecuriCare team a call on 0808 256 5400 as we’d be happy to advise.

“My biggest achievement was seeing the Foo Fighters live at the O2 exactly a month after stoma surgery.” - @big_british

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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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