My Journey with NETs: Part One

I have been on a journey with Neuroendocrine Cancer since around 1999 and have decided to try and document my experiences both physical and spiritual,  hopefully as an encouragement to others.

I would like to pay tribute to the many people who have prayed for me (and continue to do so) through my illness – these include members of my own Church, the Home Group I lead, and various others in different places including the UK and New Zealand. I feel that I am carried through all the experiences I have undergone on a cloud of prayer, which has given me great peace and been a source of spiritual growth.

Words cannot express my gratitude to Colleen my wife, who has bravely stood by me throughout, lovingly supporting me, being my sounding board and practical adviser and helper in every challenge, always keeping me positive and lifting my spirits. To a very large extent, my journey has also been her journey.

God has been present throughout the journey, and as I look back I can see his loving interventions in so many situations, and his response to prayer.

Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Philippians 4:5-6)

 

Part One: First Stages

As a blood donor for many years I arrived to give my ‘pint’ as usual, only to be told that my iron levels for 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 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.

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.

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