My name is John. I live in Edmonton. I’m 54 years old.
I have Stage 4, or the advance stages of, prostate cancer. So every month is Movember around here. (Minus the moustache.) I like to say: “I’m working on living – as opposed to working for a living.” Although, up until recently, I didn’t like to say anything. To anybody.
For me, it all started with a routine physical and blood test that showed a high prostate-specific antigen. I was officially diagnosed in August 2012. Since then, I’ve undergone radical surgery, radiation, cycstoscopies, a laser incision, urethrogram, several catheters, hormone therapy, reconstructive surgery, and more medications – often with unpleasant side effects – than you can imagine.
For the last four years, I’ve walked the walk. Now it’s time to talk the talk.
In January of 2009, a routine physical, which included a blood test, revealed an unusually high PSA (prostate-specific antigen). The results were concerning enough to warrant a biopsy. The biopsy was negative. But my urologist felt I was a high-risk prostate cancer candidate, so frequent blood tests became an important part of my routine.
In April of 2012, one of those blood tests revealed a PSA of 14.1. Yes. Uh-oh.
Another biopsy. The results would not be known until August. Then, finally, on a mid-August evening, the phone rang.
My doctor’s name and number came up on call display. I was prepared for the worst… and the news was bad.
My wife and I met with him a couple of days later. He taught us about the prostate, the disease and the options that were available to try and cure the cancer.
In November, I underwent radical prostate surgery. The operation went well. I was admitted on Nov. 7 and released four days later. I went 11 days without a bowel movement (ugh.) I was off the job for about a month.
Bladder spasms were routinely making my life miserable. I would take codeine-based pain killers to try and calm things down but those drugs also cause constipation, creating a very vicious cycle. A cycle that has widened, and become more vicious throughout my illness.
Then, we got the results of my biopsy. Again, not good. Cancer was located in 24 per cent of the prostate and in an area that could have led to a spread. My Gleason Score was a seven.
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It was 2013 now and radiation was the next step. My treatments started in the middle of February and finished in April. Unfortunately, radiation oncology couldn’t make a clean sweep. My PSA was measuring in at 0.7. I started wearing an adult diaper. Leaking was the residual of surgery and radiation. I had a regular array of cystoscopies, a laser incision and a urethrogram.
My urologist and I liked to share a good joke, opinions on sports and kids hockey. But my wife said we needed to talk serious. About my condition and the future.
So, during a cystoscopy in March (he was essentially rotor-rootering me in preparation for a trip overseas which is incredibly painful), I said: “My wife says we need to get serious about my situation.”
To which he replied: “We’re not looking for a cure any more, we’re just trying to buy you some time.”
Insert kettle drum sound effect. Not the kind of conversation I was hoping for.
And why the rotor rooter? Scar tissue was starting to take over my urethra, bladder and sphincter muscles. That’s when a reconstructive urologist was introduced to my case.
In August of 2014, I received an injection to begin hormone therapy, which seemed to work. My PSA improved to a level of .01. (But I did have these uncontrollable urges to take bubble baths, light candles and cry at sad movies. Kidding.)
We knew that eventually, something would have to give. And in October, my plumbing completely stopped. I had not passed urine in more than eight hours. The pressure and pain were unbearable, so I ended up in the ER.
I finally got going. After a blood test and an ultrasound, I was diagnosed with having a Urinary Tract Infection. I was prescribed an antibiotic and sent on my way. Two days later I was back with the same problem: unable to void.
This time, several different health care professionals tried to insert a catheter. Eureka! We thought. But, as we found out two days later, the catheter had been inserted through a false passage. I was in Emergency for an entire day. The pain and pressure were excruciating. Then, once a senior resident urologist was notified, I ended up with a suprapubic catheter. Two years later, I still have it.
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I was admitted to hospital, made a brief three-night stay and was quickly ushered out moments after I moved my bowels. I was not ready to leave. But other than the fact that I have cancer, I’m in excellent shape.
And I know how to play hurt. So I think I get these early releases because I look and act like I’m not sick. I made two more visits to a different emergency ward because there were problems with the catheter.
When we finally got things figured out, I needed two months to recover at home. I came back to work in January of 2015.
That same month, I had an important meeting with the reconstructive urologist. Turns out, I’m one of a handful of patients in the world who has dealt with this rare and complicated condition.
We discussed various procedures that would hopefully turn things around. First, a three-phase set of operations designed to repair my urethra, bladder and sphincter. Each operation was contingent on the other. Each would put me in the hospital for a week and each would keep me at home for about six weeks of recovery.
The other operation would see my bladder removed and the attachment of a tube from my kidney to a bag. The operation was quite a bit more intense. I would be on the table longer, there was a greater risk of infections (plural), a longer time in the hospital, and a longer recovery time at home. There was also a possibility for a cure, according to my doctor.
I decided to stay with the catheter. To see how I could handle that sort of life, first. Mistake!!!
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Things were going well until I offered to referee a 90-minute block in the World’s Longest Hockey Game. (In support of cancer research.) Lots of goals, lots of me picking the puck out of the net, which created a pistoning effect with my catheter. I was screaming in pain during the drive home and also ended up with a Staph infection. I did however get a prescription for opium suppositories. My go-to med. Because when the pain kicks in, it really kicks in.
That was in February. From about the middle of March until the first week of July, that pain became prominent. I had more bad days than good and it was wearing me down – mentally and physically.
In April, I saw an oncologist in Calgary. He’s regarded as one of the best in the country. He told me that I have biochemical recurrence. The cancer is alive and seeking to destroy other organs. Based on statistical data, that would happen five years after my original diagnosis or… might not happen at all.
Then, with the pain – now chronic – I decided to attend a prostate cancer support group session and told my story. There were quite a few gasps and groans. But just as many excellent suggestions. Like, get to a doctor fast or try the Mayo Clinic or give cannabis oil a whirl. The story that follows is just far too preposterous to put into writing. A serious indictment for our health system. But to quickly summarize, I finally ended up with a visit to a gastro-enterologist. I found out my opium suppositories are out of production until April! April!!
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From around mid-July to early September 2015, I was feeling excellent again. We were doing some home renovations, and I decided to lift and move several boxes of hardwood. With the last box, I heard a pop. Thought it was my knee. Nope. Five days later, I was in the ER yet again. I popped the balloon on my catheter! The device eventually slipped out. Eek!
More severe pain to follow. This time it felt like a volcano in reverse. The pain and pressure – in reverse. Like it was blowing inwards.
Another trip to the gastro-enterologist. A new med and Milk of Magnesia. They seem to be working.
But I know the catheter and the fact that I’m still trying to do the things I used to but shouldn’t are big reasons for my setbacks.
It looks like surgery will happen in the New Year. We are going to get rid of this catheter and get on to a better quality of life.
It’s probably the scariest roller coaster I’ve been on and probably for people close to me but we are hoping we end up laughing when we cross the finish line.
My motivation is family, of course. My son is 14 years old. I want to see him drive a car. I want to see him graduate from high school. I want to see him graduate from university. Those are the things that definitely keep me going.
I am loving life right now and I am doing everything I can to keep living.
My advice? Make regular doctor appointments and pay very close attention to your physical and mental health. Because if something changes mentally or physically, chances are it is for a reason.
*EDITOR’S NOTE: Join team Global Do-MO-nation and support the Movember Foundation as they raise awareness and funds for men’s health. Are you taking part in the Movember movement? Send us pictures of your Movember Mo-ments to edmontonphotos@globalnews.ca. We’ll share them on Global News at 11.
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