The Patient Experience, Ian Smith

The first six months of the new millennium was a time for two wake-up calls. I was quite unaware of it at the time but a major life-changing event was on the horizon. Never in my wildest imagination would I have considered talking to strangers in casual conversation about incontinence and the side-effects of prostate cancer treatment. Incontinence happens to the elderly or as a result of an accident or for some other reason, not to me enjoying good health or so I thought. At my wife’s suggestion I signed-up at the new gym that was scheduled to open at my local shopping mall. I even thought it wasn’t really necessary as I have always been quite active. As it happened, that was one fortuitous decision.

The spring of 2000 saw me “working out” at the gym usually on the treadmill watching the cardio monitor creeping up through the 130 level even to 150-plus. Whoever said that I was fit - whom am I kidding? The motivation was a forthcoming surgical event for a radical prostatectomy scheduled for 17 July. In the meantime, I had spent more than a couple of hours researching incontinence products, conscientiously practicing my Kegels and hoping that it was going to be effective.

Step back to January 2000 which saw me attend the family’s GP for a routine physical examination - the first I regret to say - in many years. My first and only prostate specific antigen (PSA) test before I was eventually to present for prostate cancer surgery, was not part of that physical and ordered as an afterthought.

The results of that initial test showed an elevated PSA level 5.9ng/ml at age 57. In the absence of any other symptoms that might have been discovered by a digital rectal exam (DRE), it was sufficient for my doctor to refer me to a Brampton urologist. The following procedure is well-known to middle-aged men - PSA test, DRE as part of a routine physical, ultrasound and finally the dreaded biopsy. Then more often than not, receiving the diagnosis “you have prostate cancer.” A comment about that biopsy. For me, and maybe for many men in the same situation, it was after the event that I realized that the anticipation of biopsy was worse than the procedure itself.

During my stay in hospital I was reminded about an idea that originally came to me during a visit to England in March and long before there was any thought of surgery. This was to tackle the popular Coast-to-Coast walk. The following year 2001 was to be the 40th anniversary of my first long-distance walk around 175 miles along the Pennine Way in northern England. A great idea; there would be plenty of time to train for it.

The months following “de-catheterisation” gave me new empathy for toddlers wearing diapers. Each day by late afternoon I would have changed my pad at least twice. It is so easy now to understand how young children become fractious when they need to change diapers! Removal of the catheter after five days only permitted gentle exercise walking; driving the car was “out” for at least two weeks. Each day I would increase the distance for the day’s walk.

Then one day during my recovery in early August 2000, I well remember how depressed I felt with the possibility of incontinence hanging over me. How was I going to get back to enjoying one of my favourite past-times from my youth? “Wake up, snap out of that mood”! I said to myself. “There are so many other people in much greater discomfort and pain than you, they don’t complain.” Of course pain was not an issue for me, only the necessity of ensuring adequate supplies of pads and a change of clothes that might be required.

On that particular day I had increased my target distance around 6 kilometres. By the time I was on the return leg passing through my local mall, I recognized that I had something of a leakage problem. How I hoped that no-one would spot my condition; I made it back home without further incident. Even so depression was a major factor in daily living and happily, bouts of feeling low became fewer. I persevered with the Kegels but even so there were a couple of other later leakage incidents.

One of the features of the laparoscopic surgery that I received is the surgeon’s ability to remove the prostate gland and repair the connection of the urethra to the bladder through 2 or 3 small puncture sites in the abdomen. With the “open” retropubic procedure ( perhaps only one or two at most, stitches can be applied ) a large incision through the abdomen requires a much longer recovery period. Thus my period of regaining continence was expected to be relatively quick. One of the incidents that I have just referred to occurred one day in December whilst at the gym. I was on a rowing machine, pulling strongly when it became apparent that there was again a major leak. A point for the guys – this has been a major surgical procedure. Do not forget that even after six months everything is still not back to normal with the waterworks department. Do not push your luck and overdo things.

Having learnt that lesson, I maintained daily use of a pad until April. At that point, I was down to the occasional “drip” and discontinued pads; I was to all intents and purposes “dry”. This situation continued through the years that followed. I had come to recognize those times when I might experience a drip or two for instance in bending over suddenly or with vigorous exercise. I controlled these situations by using products designed for women.

One time I conducted an informal and quite unscientific survey of members at a meeting of a local prostate cancer support group. I wanted to find out from the seventy or so members present, their own experiences with incontinence after their individual procedures. To my surprise fewer than 20% responded to this anonymous survey. Those that did reply all mentioned some degree of continuing incontinence but with few details of how it was managed. This experience serves to illustrate that whilst men are somewhat reluctant to relate to health matters – in this instance to prostate cancer and resulting effects of treatment – much work remains to change popular attitudes to incontinence.

It is difficult to remember precisely when I came across the website for Canadian Continence Foundation. I certainly acknowledge the excellent contribution given by articles in the “Informer” when dealing with the issue of incontinence after treatment for prostate cancer. I have referred to these articles on many occasions in conversation with men, both in my previous position of Awareness Co-Ordinator with the Us Too! Group and more recently with my own “Blue Ribbon” support group.

In summary but for two fortuitous events, a timely PSA test and some gentle wifely prodding to join at the gym, I believe that life today would have been quite different. I am thankful for the new lease on life that I have received and the opportunity to try and make a difference for other people too.

Ian Smith 2009