A person stands with speech bubbles showing kidneys, a bladder, and a urostomy bag.

Why We Need Awareness Month

Social media has changed our lives in many ways. Many for the good but, of course, in other ways less positively. On the one hand, it is a great way to share the message about a cause or a topic close to our hearts. On the other side, it can be all-consuming.

It can take us away from the present, away from those in the room beside us. So, for me, I don't jump on every awareness campaign or day, or month that comes along.

I carefully consider what matters to me the most. What makes me want my voice to be heard? What makes me want to help others to listen and understand?

My experience

Well, as most of you know, my surgery for late-stage bladder cancer left me with 2 ostomies - a colostomy and a urostomy. As I started my post-surgery journey, a few things became apparent to me.

One is there were very few people with 2 ostomies, but others were out there. Most people I met via social media had 2 ostomies due to recurrent ovarian cancer.

The second was that there were so many social media feeds, advocates, posts, etc., about a colostomy or ileostomy but not much about a urostomy.

I have heard it said that the urostomy is often considered the "forgotten stoma." In my opinion, it is not talked about as much as other stomas.

But awareness month is more than just about talking about a urostomy.

What is urology?

Urology is one of the most varied branches of surgery. It encompasses diseases of the kidneys, bladder, and prostate, including incontinence, impotence, infertility, cancer, and reconstruction of the genito-urinary tract. It caters to patients of both sexes and all ages, from newborn infants to elderly pensioners.1

So urology covers all bladder-related issues, including bladder cancer. It also covers illness and cancer of the other urological organs, such as the kidney and prostate.

I knew nothing of bladder cancer when I was diagnosed. Perhaps because, as was explained to me post-diagnosis by my medical team, it usually affects older people? Or perhaps it is also because people don't like talking about organs that are key to the basic human need to go to the bathroom - the basic need for waste to leave our body, including through urine.

Whatever the reason, awareness of urology and the associated cancers, for me, is key.

The power when you know what to look for

People need to know what to look for when things are not as they should be. People need to know when to seek further medical help.

It is also important for me to make it a normal and freely discussed topic. Not something that the wider public is uncomfortable talking about.

Awareness may curb misdiagnosis

From speaking and engaging with other bladder cancer patients, I have often been told that embarrassment was at least part of the reason they delayed seeking medical assistance, especially in males.

In the same vein, many women have told me that they put their issues down to UTIs or similar. Indeed, often they were told, like me, it was UTIs. This led to late diagnoses in many of the women I spoke to.

Raising awareness for bladder cancer

So, the next time you have the opportunity to start that conversation or raise awareness of bladder cancer in your own way, know you are getting the message out there, and every little bit helps.

I am pleased to say I have helped share the message on social media. However, I have learned so much from what others have shared equally. I have learned more about kidneys and prostate and the experiences of others.

That's why we need awareness month! How will you raise awareness?

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