Why It's Important to Keep the Advocacy Wheels Turning
Last updated: May 2023
My bladder cancer journey began almost 6 years ago. I have developed and grown in this time - grown in many ways. Grown as a patient, grown as an advocate, and grown as a person. Unfortunately, I feel society as a whole has stagnated in terms of awareness.
Being diagnosed with cancer is something no one forgets. Hearing those words for the first time is truly haunting. You have gone from being "just you" to "you with cancer." Initially, you feel that your life has been turned upside down in a heartbeat; for many, it truly has. That's not to say an equilibrium will return at some point, but for now, it's raw and real, and there is no getting away from it.
Adjusting to help cope
I very quickly realized I had to change how I handled things. It wasn't a conscious change per se, more that as my journey progressed, I adjusted to help me cope. I looked at ways of taking control and accepting what I couldn't control.
I couldn't control having cancer, but I could control how I dealt with it. I couldn't control when I would get that next critical appointment, but I could control the notes I took and the questions I asked when I got there. I then started to advocate for myself. Looking back, that was the start of me wanting to make a difference.
Initially, making a difference for me, but as my journey progressed and I became stronger, advocating for other people too. Making their voices heard. I am involved in many different things to help raise awareness of both bladder cancer and ostomies. Getting the message out there has never been more important.
I am more than 5 years post-surgery and the creation of my 2 ostomies. It is clear that while I have grown as a person and an advocate in that time, society hasn't moved at the same speed.
More and more people are opening up on social media about ostomies, although being vocal about bladder cancer at the same level lags behind a little.
One main reason for this, I believe, is the demographics of bladder cancer patients. Fewer bladder cancer patients are perhaps active social media users than with some other cancers. All that said, as a society, we need to accept others.
"Where is your wheelchair?!"
Last weekend, I attended a fabulous all-weekend country music festival in Glasgow, Scotland. It was a great atmosphere. I went with my husband and our friends. My ostomies played ball, and we just had so much fun together.
In the UK, toilets previously called "disabled restroom" are now widely known as "accessible restroom." The main reason for this is it is now acknowledged that not every disability is visible. There are many reasons why someone needs privacy or the space of an accessible restroom.
I have 2 ostomies and have what is known as a radar key. This allows me access to accessible toilets. I never abuse it, and while I have the right to use these restrooms, I do so only if I have to change my ostomy bag or, indeed, I can't wait. If I am emptying my urostomy bag, I usually go to the lady's room.
The venue I was attending holds 10,000 people and was at capacity. I wore my leg bag for extra capacity, but when it got to the end of one of the acts, it was getting full.
Unfamiliar with the venue, I was slightly panicked as I looked for the nearest toilet. By the time I reached the restroom, the queue was large. I, therefore, used my radar key to access the accessible restroom.
The place was so busy. As I came out of the restroom to return to my seat, a guy was standing by the balcony at the side of the foyer. As I walked away, the guy shouted after me, "Where is your wheelchair?!"
Educating the wider public on bladder cancer
I often use opportunities like this (it is not the first time someone has commented) to educate people, but I was a bit taken aback on this occasion. There was the initial stress of locating the nearest toilet, something I will do when I arrive in a large venue going forward, and then panicking I wouldn't be able to empty on time. Also, I was having fun and didn't want to spoil my night.
That said, it made me think a lot in the following days. There is still so much education to be done in the wider public. If each conversation and social media post could educate even 1 more person; then it is all worthwhile.
For me, and this reason, it's important to keep the advocacy wheels turning as we celebrate this Bladder Cancer Awareness Month and in the months which follow.
Has cancer impacted your mood during the holidays?