what I mainly remember was my wife Chris holding my hand which gave me a great deal of much needed comfort and security
It was 10th November 2010 just after midnight. I gradually woke up from the anaesthetic after a marathon 9 hour surgery – the first of what was to be several visits to an operating theatre. I remember it being dark and I also remember feeling 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 (type Carcinoid) and that the prognosis without any treatment wasn’t good. 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 a ‘somatostatin analogue’ – it also confirmed I had more tumours than initially thought. This was key to working out my treatment plan.
When I presented in July 2010, I was suffering with ‘carcinoid syndrome’ although mainly flushing. My subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming the biopsy result. The elevated readings were due to the 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 and de-risking of the initial surgery, 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.
I refused the offer of a wheelchair and chose to walk to the operating theatre at 2.00pm – about 3 hours later than planned. So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown, I wandered down to 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 ilium 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 10 November was NET Cancer Day. Some 4 years later I not only celebrate the fact that I woke up after my first major surgery but that I have also woken up to the idea and inspiration behind NET Cancer Day!
To learn more about NET Cancer and the importance of 10th November – please check out this site: http://netcancerday.org/
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