It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9 hour surgery – the first of what was to be several visits to an operating theatre. The last thing I remembered before going ‘under’ was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained by the dozen or so ‘connections’ to my body. However, what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.
The build up to this day began on 26 July 2010 when I was given the news that I had metastatic Neuroendocrine Tumours and that the prognosis without any treatment wasn’t good. A liver biopsy graded one liver tumour sample at Ki-67 5+. I told my Oncologist to ‘crack on’ with whatever treatment would be required.
However, it wasn’t that easy and as I was yet to find out, Neuroendocrine Cancer isn’t a simple disease. I first had to undergo a plethora of other tests including specialist scans, blood and urine. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a substance known as Octreotide which is a type of drug called a ‘somatostatin analogue‘. The scan also confirmed I had more tumours than initially thought. This was key to working out my treatment plan.
When I presented in July 2010, Although I hadn’t realised, I was showing symptoms of ‘carcinoid syndrome‘ although mainly flushing but thinking back, there was some diarrhea albiet infrequent. The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming the diagnosis. The elevated readings were due to the tumour bulk and excessive secretion of specific hormones which is one of the facets of metastatic carcinoid. Thus why I had to be established on a ‘somatostatin analogue’ which is designed to inhibit the excessive secretion. I self-injected Octreotide daily for 2 months until the flushing was under control. When Carcinoid tumours cause carcinoid syndrome, there is a risk of a phenomenon known as ‘Carcinoid Crisis’. This is the immediate onset of debilitating and life-threatening symptoms that can be triggered by a number of events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 in order to have an ‘Octreotide soak’ (Octreotide on a drip) prior to the surgery on 9th November 2010.
As is normal for such procedures, I had the risks explained to me. There seemed to be a lot of risks on the list and my surgeon, Mr Neil Pearce, carefully explained each one. Death was on the list but I was happy to hear he had a 100% record on his ‘table’. Trust is an extremely important word when you’re in this situation.
As a snub to cancer, I refused the offer of a wheelchair and chose to walk to the operating theatre at 2.00-2.30pm – about 3 hours later than planned (it was worth the wait because I’m still here!). So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown (carefully fastened at the rear!), I wandered down to the operating theatre with my nurse.
The 9-hour operation was designed to debulk what was described as “extensive intra-abdominal neuroendocrine disease”. The operation comprised the removal of 3 feet of small intestine at the terminal ileum plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction. With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava below the level of the superior mesenteric artery. Thank goodness I was asleep 🙂
In those days, I had no idea that 10th November was NET Cancer Day. Some 6 years later I not only celebrate the fact that I woke up on this date after my first major surgery but that I have also woken up to the idea and inspiration behind NET Cancer Day!
However, for me now, EVERY DAY IS NET CANCER DAY