Hi Peter and Lesley,
I do have an ileal conduit but I didn't really have any other option. I joined an on-line bladder cancer support group called BCAN- Bladder Cancer Advocacy Network. The site has many different forums covering all aspects of the bladder cancer spectrum. I hope this helps.
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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.
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In June 2007 I went to my doctor at the first sign of something different with my urination. I undertook a simple urine test which showed nothing obvious. I was given antibiotics for a urinary tract infection. A week later with no improvement I returned to the doctors. (In the pre-diagnosis time I saw three doctors all up, at the same clinic.)
In the next few months, more visits to the doctors and more urgency and frequently of urination and slow voiding. I was told it was menopausal syptoms and I was given estrogen in the form of vaginal creme. I was then told to retrain my bladder to be able to hold more urine. I also mentioned that I thought there was a little blood in my urine, although no further urine tests were given. During this time two referrals were sent to a womens clinic in a city hospital. Both were apparently lost in the system.
By December 2007, there was lots of blood in my urine, so I took a jar of bloody urine into the doctors and asked for another referral to be sent. When finally seen at the womens clinic, the doctor there had alarm bells ringing and ordered a series of tests. By January 2008, the diagnosis of bladder cancer was on its way. Too late to save my bladder but hopefully not too late to save my life.
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I can relate to everything that's been said already. I had bladder cancer and now have a urostomy instead of a bladder. I know it's not polite to talk about toileting habits but most ostomates need to talk to someone as it's so different, at least at the start.
Our families with the exception of my parents and one sister, barely visited me during the two weeks that I was in hospital. And some certainly have not checked on me since. We saw them at Christmas and a couple of family dos and they really seem to want life for me to go on as it was before. Well as you all know that's never going to happen. My friends have been more supportive than family, with the exceptiion of my parents who ring me every day.
I participate in online chatrooms for ostomates, which are wonderful. This website is also excellent in helping me in many ways.
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Sorry to hear of the return of your cancer. It's something too that I live in fear of. I had a radical cystectomy after being finally diagnosed with an aggressive form of bladder cancer early 2008. A lot of what you said rang true for me too. Anytime you want to talk about living with a urostomy or anything, I'm here. Hugs Julie
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I'm a teacher too, at a primary school in Victoria. I appreciated the new publication. I was sent two copies recently, of which I gave one to my principal. I was diagnosed over a year ago and feel my cancer news and absence wasn't handled that well. But I've moved on and how do I tell new students, parents or colleagues now.
My friend is a pre-school teacher. She had Hodgkins Lymphoma about 5 years ago. I'll tell her about this site, so she can tell her own story. She took time off during her chemo.
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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.