This week the Canadian Cancer Society released data saying that 50 percent of Canadians will receive a cancer diagnosis this year, an estimated 206,200 with an estimated 80,800 expected to succumb to their malignancy — making cancer the leading cause of death in Canada.
As a cancer survivor, this data, albeit rife with hyperbole and lacking answers as to what causes death –it isn’t always cancer, Often it is the supposed cure that kills people. Nevertheless, I recalled my diagnosis.
“You have cancer,” are three of the most frightening words one will ever have to hear; three little words that have a tremendous impact on one’s psyche. Upon hearing them the body does an amazing job of dealing with them usually by going into shock. For the next few moments, there is nothing but a hollowness inside your head while you try to fully grasp and comprehend what you have just been told.
Following that you quickly become aware of the fact that you are going to die; because for most cancer patients that is exactly what happens. The Canadian Cancer Society report suggests that half of those diagnosed, or 25 per cent of all Canadian will die after getting this diagnosis. For some, the time frame is known and for others, it is not. No one really knows. Doctors can estimate, and sometimes they are accurate and then sometimes they aren’t.
When you finally get a moment to yourself to deal with the emotional consequences of what you have just been told you immediately think of the life you have led. Were you good, bad or indifferent? You think of the goals, hopes, dreams, and aspirations that you have achieved, followed quickly by the knowledge that all those hopes and dreams and aspirations you were hoping to; will now be left unfulfilled.
For me, those fateful words came in February of 2008 and the events that followed to this day are hard to comprehend, but I hope it will help to explain where I am coming from and my often criticism of our health care and cancer systems.
My cancer was discovered on a trip to a urologist after I noticed blood in my urine. My urologist was quite certain that I had cancer when he scoped the inside of my bladder but he said he would need to do a biopsy just to be completely sure. Why he didn’t take a tissue sample right then and there while I was at the hospital, I still don’t know why. He said I would need surgery and with a little bit of finagling I was scheduled to go in, in about a month’s time. (Originally I was scheduled to go in three months later) The following month was a very surreal time. Walking about, knowing that you have cancer inside you; watching as the blood in your urine increases more and more.
Following surgery I then waited another month, for the results of the biopsy to come back and to be told that what the doctor suspected was cancer; was indeed cancer. This is where the disappointment and frustration begins. Initially, my cancer was considered stage 1, or as he said, “T1 G3.” This meant that the cancer was only in the inner lining of my bladder but it was very aggressive.
My urologist couldn’t tell me definitively what the next course of action should be. He knew that of course, I needed more surgery but what that would involve he said was up to me. He could try and remove the remaining tumors in my bladder and we could hope and pray that it wouldn’t come back, or we could remove the bladder altogether along with my seminal vesicles, my prostrate, and any surrounding lymph nodes-. Either way, he couldn’t say for sure if cancer wouldn’t come back or spread.
We, or should I say, I decided to go with option one. This would turn out to be a grievous error. This time I had to wait the full three months for surgery. It was a waste of time. As soon as the urologist started, he was done. Cancer in my bladder had increased; this meant for sure the bladder etcetera would have to come out. But I would have to wait for my next scheduled appointment, in three months’ time, to discuss this. At that appointment, we decided to remove the bladder et al, and surgery was booked, in another three months.
Now I was beginning to become seriously concerned and my concern would become far more serious.
While waiting for surgery I developed a pain in my groin, which at first felt like a pulled muscle. I called my urologist but he told me not to worry and said that there was nothing on the CT scan of concern. But soon my groin ached more and more and eventually, I couldn’t put any weight on my left leg and I needed crutches. I called my urologist again but again was told not to worry. But worry I did and decided to go to emergency. I explained what was going on and the doctor on call said he would take an x-ray. Six hours later I had an x-ray taken and two hours later I was told I had arthritis in my hip and sent home with a prescription for Percocet. The following day I went back, said I wasn’t happy with the previous day’s diagnosis and asked for a CT scan. After much, ahem, discussion, I eventually got a CT scan.
The news was not good. The cancer had spread and now I was also at risk of a pathological fracture due to metastatic cancer. I can’t imagine what would have happened if I hadn’t gone back to the hospital the next day. I am positive I would have lost my leg, and quite probably I would not be here today. In fact, there is no reason for me being here. The doctors themselves say that I am a medical mystery to them and occasionally they will use the word miracle.
That night when I got home my urologist called and said that I would no longer be scheduled for surgery until I underwent chemotherapy and radiation to hopefully stop the spread of the disease.
This would only lead to more frustration and disappointment.
Within the week I was scheduled to meet with my medical and radiation oncologists.
The radiation portion of the treatment would be fine, ten sessions in ten days and hope for the best. This was scheduled rather punctually.
Next would be chemotherapy. I met with my oncologist and was told that she was recommending four drugs. She also told me not to expect a cure or anything, because there isn’t one. The best she was hoping for was an extension of my life. More or less so I could go home, make my final arrangements and prepare for the worst. As she said, “she was being cautiously optimistic.”
My situation is not unlike the experience of many cancer patients. Survival is very much dependent on being able to navigate the system, being your own self-advocate being able to speak up for yourself, to demand that waiting for months and months to get test results or to be scheduled for surgery is completely and utterly outrageous and even then you are dependent on a system that has less a than a stellar track record.
The cancer clinic operates Monday to Friday 9-5, as do most of the operating areas. Doctor’s clinic hours are usually 9-5 Monday to Friday and most often you have to wait hours on end before you get in to see someone. (One day my wife and I actually waited over four hours to see my oncologist, as the waiting room eventually emptied out I asked the receptionist if I was next. She told me I would have to reschedule as the oncologist had already gone home for the night. They had literally forgotten about me)
Many factories operate on a three-shift system, maybe some sectors of our hospitals should operate like this, after all, are we not just like inanimate objects being processed on an assembly line.
This is just a brief synopsis of my experience; I go into more details in my book “Beating the Odds”. I hope it has given you some insight as to where I am coming from. There is an old saying, “do not judge a person until you have walked a mile in their shoes.”
Well, next time any of you wish to criticize me for my views on our healthcare system or the cancer societies in the world; I suggest you take a walk in mine.
Andrew Glen holds a B.A. in English and Political Science from Western University (UWO). He is married with two sons and lives in London Ont. He is the author of Beating the Odds; a chronicle of his battle with and overcoming Stage IV bladder cancer. War Dads, a fictional novel dealing with the unfortunate events surrounding PTSD and The Grotto and Other Stories a collection of short stories.