Who am I now? Still a person, a woman, a partner, mother, daughter, sister, friend, teacher, urosomate, cancer survivor, me... I'm still me. My ostomy journey began in mid 2007 with bladder incontinence symptoms that were treated for UTIs and menopause for six months. Finally diagnosed in January 2008 with bladder cancer, I had a procedure to try to get the tumour out but it had invaded the bladder wall.
In late February 2008, I had a radical cystectomy, where I got three operations in one. I had a hysterectomy because those organs were so close to the bladder. Then to enable the ureters to carry urine from the kidneys to outside my body without a bladder, a conduit was made from my ileum and the small intestine sewn back together.
So I awoke finally, to discover my stoma, a part of me, poking out cheekily. It had a good spout and performed well. I was truly amazed by it. Before leaving hospital, I was trained to care for my stoma, learning how to attach a pouch. Gradually my strength returned, going back to work after nine weeks. Interests such as bike riding, gardening, walking returned soon after that.
So what's my new normal? For a start, I'm here! Without the urostomy, I wouldn't be here full stop. So how do I manage to work full time, garden, bike ride, camp, travel, trips to Melbourne, etc? Fortunately, from the start, I had a supportive family who said mainly all the right things. Some have moved on and say they have largely forgotten about my urostomy. Most friends either do not know about it at all or don't understand much past the basics. But all treat me as normal which helps. Funny though, I'm never on my own in this journey. I have a good support base.
Fortunately the practicalities of a well-formed, well-positioned stoma have assisted me. I try to keep pouch and base plate changes to a minimum of fuss- quick and precise. The reality is leaks and frequent toilet trips could happen. My leaks have all been due to human error- mine! But they are infrequent and I have confidence in my appliances. Also I'm pretty upfront. If I gotta go, I gotta go! I ask people to look after my class or nick out during shows, movies, etc. I'd rather do that, than leak.
During the day I live a full active life. But at night and weekends, I've surfed the internet for ostomy sites. The forums for ostomy questions and answers and the live chatrooms, where I can talk to other ostomates, provide all the support I need between my real support meetings. Armed with a great stoma, basic training, acquired knowledge and continued support I'm ready for anything. Last December, eight months after my operation, I rode the last three days of the Great Victorian Bike Ride, covering 250kms.
I realise it's not always easy. But I never truly felt sad about having a stoma. My suggestion to those who want a better normal is to get fitted out with the best appliance possible; seek support from those who can give it; set yourself little challenges; and always be prepared for whatever this wonderful life sends your way.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.