My Story

My experience with the healthcare system started a long time ago. I was about 12, and our doctor diagnosed sagging arches, told me to roll up a towel with my toes. At 12, so much for the healthcare system. Next came when I volunteered for the Dutch Air Force as an electronics technician. This was the most intense check-up I ever received, and after one and a half days of prodding and poking, I was deemed fit to join the Air Force. But after they told me that I would have to sign up for six years, I decided against joining. Six years for a 17-year-old is a lifetime. After six months in an office in time study of an aircraft manufacturer, I signed up on a cruise ship as a bellboy, worked my way up to waiter in first class, worked long hours but had fun traveling to and from Rotterdam to New York, around the Caribbean and South America. After a year, it was time to change, and I was being drafted for the Dutch Army. I decided that would be a waste of time, and at nineteen, I emigrated from the Netherlands to Canada. My first real experience with the Canadian healthcare system was when I slipped on the wet grass, kicked my then 12-year-old daughter, and broke a toe. After three days of the somewhat painful experience, I decided to visit our family doctor who sent me for x-rays and then confirmed that I had broken my toe, and he couldn't do anything about it. In 1978, he delivered my youngest son in the middle of the night. We spent quite a bit of time talking while we were waiting for my son to arrive. He was an excellent doctor providing healthcare appropriate to his patient. He would offer to prescribe but explained if it was necessary or not. Unfortunately, he retired. The next experience with the healthcare system came in 1999. I had a mild heart attack, ended up in the ER, decided that I was allergic to morphine; spent 5 days in the hospital, made sure I passed the stress test. I stopped smoking, changed my eating habits as well as my lifestyle, which caused my cholesterol to go from extremely high to below normal, dropped most of the medicine for cholesterol and high blood pressure, and continued living a normal life.

December 2011 – I noticed that walking up one or two flights of stairs, I ended up slightly out of breath. Since this was rather unusual, I decided to check it out. I called my doctor to make an appointment but went to the walk-in clinic instead, where they did a bunch of tests and referred me to a heart specialist. In spite of the significant number of various tests for the heart, they couldn't find any problem. Finally, it was determined that I had a very low hemoglobin count. So after spending some time trying to find a heart problem, it was decided I still had one, and it was working fine. Next, a visit to a gastroenterologist, a gastro what?

The gastroenterologist scheduled an endoscopy and a colonoscopy. I asked the doctor that if he used the same tool, would he mind doing the endoscopy first; I got a blank look. He explained that they don't use the same tool, then realized what I had said and started to laugh.

After the procedure, during which I was luckily mentally absent, he apparently asked a general surgeon to have a look. Of course, just what I wanted, to have my insides shared.

But fortunately for me, the general surgeon decided he would take me as a patient, and again with luck on my side for having this surgeon, he explained that I have four masses of colon/colorectal cancers and he has to operate and remove my colon.

He explained what an ostomy is; he tried to tell me that it may be possible to eventually reverse the procedure.

After researching the procedure, I quickly realized that reversal was just a gesture to let me down gently. I remember complaining to the receptionist about false hope; then she explained how devastating it is to some people. She tells me that some people walk out crying. The surgeon schedules a bunch of procedures, x-rays, blood tests, and at the last minute decides he wants an MRI. This typically takes six months of waiting for a spot. My surgeon personally goes down to the MRI department and asks for an appointment for his patient, but it would have to be today. I get a call around 9:30 AM, can I come in at 12:30 for an MRI? I agree, then half an hour later: "Do I work with metal, such as grinding or cutting?" Yes. "Could I come in at 11:30 for an x-ray of the eyes?"

April 12, 2012, I end up in the operating room where the surgeon removes my entire colon, including my rectum, closes me up, and eight hours later leaves me with a stoma.
Obviously, I wasn't quite awake when this cute young nurse comes by to show me how to replace this bag that is stuck to my stomach, or maybe I was awake but not paying attention. It was the first and last time anyone showed me how to handle the replacement of the flange/bag. Five days later, I was home dealing with a change in bathroom methodology. My biggest problem was sitting down with a rectum that needed healing.

I soon learned that the best idea was to tape my cheeks together to prevent the (rectum) wound from opening up when sitting down. Then came the chemotherapy. First, I was outfitted with a PIC line. First try failed, but she got it on the second attempt, which apparently makes her an expert, especially since there was no pain involved. Chemo was a pain in the neck, just sitting there doing nothing. I started to read books (again), eventually complained that if they were going to continue to give me placebos, I would not come back. They assured me they were giving me all the chemicals I needed. I asked them if they wouldn't mind putting some extra mind-altering stuff in, no luck.

I complained that if they gave me the appropriate chemicals, then how come I still have to pay for haircuts.

During this time, I continued to work, and I returned to the cancer center often. I parked on a side street (hate paying for parking) and walked 15-20 minutes to the hospital. They gave me a bag for the chemicals to wear during the week, finally a real use for my fanny pack. The positive aspect of all this is there is a period where every week a nurse comes to my house, asks me to follow her to my bedroom, and asks me to disrobe, whereupon she dresses my PIC line, my rectum wound, and leaves....

After the operation, I researched in various countries for information on being an ostomate. I subscribed to the Mayo Clinic for cancer information, did research on the various methodologies, and appliances. I learned of a study in Sweden of providing ostomates with a titanium valve which, when applied to the stoma, would alleviate the need for a bag, possibly soon to be available for people with a colostomy.

I'm waiting for research going on to provide an ostomate with a 3D printed colon/rectum using stem cells, but probably not in my lifetime.

Read an article where a 3D printed esophagus was created for a baby whose own esophagus would not stay open. I firmly believe that we are on the threshold of extending life by decades.

After the end of chemotherapy, I went on to radiation, and again I advised the people operating the device that I would not come back unless they turned the machine on, and in spite of their assurances, I couldn't help but ask then why do I not have any side effects?

Clearly, I have been very lucky in my experience with cancer and its removal; there were no side effects, and any aftereffects I blame on old age. Of course, attitude is paramount, and my surgeon states that my attitude is the main reason it has been this easy. In 2015, my radiation oncologist informed me that it wasn't personal, but he didn't want to see me anymore, and then my chemotherapy oncologist would continue to see me, although she must be getting fed up with me since she reduced my visits from four months to six months.

In one more year, I am sure I will be declared cancer-free.

Interesting to note, in 1999, I was in the hospital for five days. In 2012, I was in the hospital for five days. In 2013, I ended up in the ER with what turned out to be a gallstone, and guess what, I was in the hospital for seven days. It is elective surgery and consequently was continuously postponed due to more urgent matters. Finally, on the seventh day, my favorite surgeon came back at 10:30 at night to remove the gallstone, and at 11:00 PM, I was in the recovery room. Note this was after the surgeon worked his regular long day.

During one unscheduled visit, I asked him why he leaves the stoma protruding while it seems to be the norm in North America to leave a rather short stoma. The doctor explained he was educated in Russia, and there it is the norm to leave a reasonable length of stoma. I'm glad he did leave it that way, as it makes it easier to manage.

So, here I am, still kicking at 74, and looking forward to many more years, thanks to the healthcare systems I've encountered and my own stubborn nature to keep going no matter what.

My story

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

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