In his own words…

Living with a Urostomy Stoma 

(Or how I learned to live without a bladder) 

Just 10 years ago, at the age of 61, I was diagnosed with malignant bladder cancer.  It came as a bit of a shock, since I had been diagnosed with a slow-growing form of prostate cancer some years earlier, and was confidently told that, other than the occasional check-up, I shouldn’t worry until age 85 or so.  I had no immediate symptoms – and this is the core issue with this sneaky cancer. 

Bladder cancer is more predominant in males; current statistics show about 3,000 cases recorded each year in Australia, of whom about 2,400 are males.  Smoking is a known cause – but I am a non-smoker. I wonder if red wine has something to do with it? 

I was lucky as there are rarely symptoms of bladder cancer, and men tend to ignore those anyway.  I noticed a very small amount of blood in my urine, and eventually discussed this with my GP.  He sent me for a scan, and days later I was having several tumours removed.  My then urologist informed me I had malignant cancer, and sent me off to another urologist who was a robotic surgeon. 

Jacques & Ken in Honolulu 2022

Not everyone diagnosed with bladder cancer will have a radical cystectomy.  I had both advanced prostate cancer (Gleeson 9 I think) and T3A bladder cancer which had fortunately not yet metastasised.  I woke up with my new companion, Henry Stoma. 

After becoming comfortable with a plastic bag attached, and plugging into a night bag on retiring to bed, I figured it was a lot better than the alternative.  Thanks to our great stoma nurses I adjusted well and was able to return to the office 10 days later – although on a very quiet schedule. 

An initial disappointment was inability to perform properly in the bedroom, as some of the nerves required had not survived the surgery.  That’s something I have come to terms with, and home life has not suffered – we console ourselves with “it’s an ageing thing” and just get on with life. 

My thoughts quickly returned to travel.  How would everything change given the amount of equipment I had to take with me.  Lots of urostomy bags, remover, wipes and of course the night bag on its stand.  So the first trip as part of my recovery was a cruise to Vanuatu and Noumea.  When wearing swimming shorts the top of the bag was visible.  Embarrassment!  No problem – I wore a rashie at first.  I very quickly abandoned the rashie; I just got over and on with it. Sometimes people ask questions and I’m happy to oblige their curiosity. 

At the Music Museum in Tokyo 2018

We’ve now travelled extensively with my appliances in tow; Japan (twice), USA, Tahiti, New Zealand and the Cook Islands on international jaunts.  Not to forget Tasmania (via Victoria and the car ferry) NSW and Queensland adventures.  Look out WA – that’s next! 

My travel advice is simple.  Take about 20% more appliances than you think you need, and take as much as possible in carry-on luggage when flying.  And get yourself a sunflower lanyard!  Not all airport staff recognise the lanyard (yes, Cairn’s airport and Jetstar I’m looking at you).  At Kansai Osaka airport it was recognised and the staff were extremely supportive.  Winner! 

Recovery Cruise 2014

Henry has suffered three para-stomal hernias; the third one is limping along and currently behaving.  I’ve informed him I’m far too busy to contemplate more surgery.  Normally he’s well behaved, although sometimes the unexpected bag leak does happen.  A few months back Omnigon advised the night bags I used were going out of production.  Disaster as that meant changing the urostomy bag as well.  Flanges are all different sizes.  Eddie at NSW Stoma pointed me in the direction of a few of the local suppliers, who obliged sending me samples to test.  Happily I quickly found a solution and now back in business. 

My last thoughts are for all ostomates to sit in on a Zoom information session conducted by Mary Egan (our GM) Carol Quast (educator, and one of our directors) and often Anne Marie (our stoma nurse).  These are on a monthly basis.  Plus if in your area, get along to one of the education days. You never know what you’ll learn – even if you’re an old hand.

December 2024