As a blood donor for many years I arrived (I think sometime in 1999), to give my ‘pint’ as usual, only to be told that my iron levels were so low that it would not be possible to take blood from me; armed with a packet of iron tablets I went to my own GP who arranged blood and stool tests, establishing that I was bleeding as evidenced by occult blood in the stool.
Thereafter I was subjected to a series of colonoscopies, endoscopies, and scans to determine the source of the bleeding; apart from concluding that it was probably in the small bowel, no final diagnosis was made. So, I continued with iron tablets and regular blood tests and got back to my normal life.
Early in 2009, I began to experience sporadic stomach gripes, particularly it seemed after eating something like a muffin. This became worse over a few months until I was experiencing bouts of stomach pain often at night, which found me clutching the mattress of the bed in agony.
My GP referred me for an ultrasound, in March 2009 which picked up the likely presence of carcinoid tumours in my small bowel which was causing a blockage. I was referred to a Durban surgeon who ordered an MRI which confirmed this diagnosis and, on the 1st April 2009, he removed two carcinoid tumours from the small bowel, mesentery, together with six lymph nodes.
During the MRI which proceeded the surgery I had a moment of anxiety, which resulted in what I can only describe as a profound spiritual experience. It was as if God himself touched my shoulders and spoke Peace into me – in an instant I relaxed and have managed to maintain this wonderful inner peace throughout the challenges of my illness.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)
After the op. the surgeon referred me to an oncologist who administered blood and urine tests every three months and a CT scan every six months and for a few years there was no evidence of persistent disease.
In October 2013, a follow up CT scan (confirmed by a subsequent MRI) showed the presence of carcinoid tumours in the liver. At this time, I was experiencing flushing which is symptomatic of “carcinoid syndrome” (a condition where the carcinoid tumours release excessive amounts of serotonin into the body) and I was put on Sandostatin LAR 30mg injections every 28 days to control the carcinoid syndrome and to slow down the growth of new tumours essentially in a holding pattern. (I have been on these injections ever since.)
It was at this point, prompted I firmly believe by God, that I decided to research my condition more thoroughly to satisfy myself that a “wait and see” approach was adequate in the management of my disease.
My experience with Neuroendocrine Cancer 