About 7 years ago, I noticed a peculiar reaction when I had something to eat or drink. Human nature has it, we try and self-diagnose ourselves, this is exactly what I did, I brushed this off as an allergic reaction. To explain this reaction, it would feel like all the blood from my body rushed to my upper body. It became so common and part of
me, that I gave it a nickname: “the rush”.
9 February in ICU after a carcinoid crisis while removing the primary tumor in theatre
All the while as the years passed, the rush took over my life, it did not matter what I ate or didn’t eat, I would get a rush at least once or twice a day. The rush now did not just feel like blood rushing to my face, but I would have an asthma attack and my heart felt like it was beating faster than normal, I would have goose bumps all over and bouts of diarrhea. Many times, I would pass out on the bathroom floor.About 5 years ago I was admitted with muscles around my heart being weak, at my age?? In the last 2 years, I had gone for at least 2 #gastroscopies and colonoscopies and I was told the same thing over and over – it is an ulcer, no further investigation.Finally, I saw Dr. De Beer on the 30th January who scheduled an ultrasound on the abdomen. Well the results of the ultrasound raised many alarms and he contacted me immediately requesting that I be admitted doing a gastrostomy on the 2nd February.
After the scope Dr. De Beer was still not satisfied with the results of the scope and requested blood tests and CT Scans. He contacted me that evening and asked me to do one more test called the 5 Hiaa test which confirmed the diagnosis. On the 8thFebruary I was diagnosed with #Carcinoid #Neuroendocrine #Tumor which had spread to my liver. The life I knew was just turned upside down.
I was admitted removing the primary tumor but unfortunately nothing can be done for my liver as there are too many tumors.
The #Tumor was removed, resection of the small intestine and 10 lymph nodes removed of which 7 were malignant. In 11 days I was tested, diagnosed and operated on. If only I knew Dr. De Beer back then, my future would have been a whole lot brighter. The cost of the treatment every 28 days is R37 000pm with a co-payment of R7 000pm when the medical aid benefit is exhausted. This is besides doctor’s bills and blood tests. One needs at least R500k a year for treatment and this is for the rest of my life.
The journey is an uncertain one with no support groups in the Western Cape to help me understand this disease better. You feel all alone with just the internet as your guide and at the grace of you oncologist. I do however want to thank my wife and kids, my mom, dad and siblings, my aunt Marlene, my colleagues at the City of Cape Town and my wife’s colleagues at FNB.
Awareness on this cunning disease is the key. Listen to your body, watch the signs and symptoms such as diarrhea, stomach cramps, asthma like symptoms, body aches, flushing and request further tests if you are not happy with your doctor’s diagnosis.
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