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D for Diagnosis. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying.
Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much grander announcement would have happened because following my chance diagnosis, I was ‘patched up’ and thankful to still be here today.
There were many tests between D day and my initial surgery taking place on 9th November, but nearly all of them were ‘ducks in a line’ ready for major surgery by a known NET Specialist. I had to check in on 8th November to have what was described to me as an “octreotide soak”. I had been diagnosed with a small intestine NET and carcinoid syndrome, so this was a precaution against a perioperative risk called ‘carcinoid crisis”. The surgery was initially scheduled for AM on 9th but was subsequently delayed until PM. Eventually went to the theatre around 2.30pm. I woke up after midnight on 10th November.
This is a story of those 48 hours.
Work – informing my work colleagues.
I had been keeping my issues private at work (less my boss and HR) but now that I was going to be off for 6-8 weeks, I had to expand the circle of trust wider than just a few people. That was a tough job!
I continued to tie up loose ends that day and was still going as Chris was driving me to the hospital for a 4pm pre-surgical appointment. I had been working full time since being diagnosed (less tests etc) and was still sending work emails during the journey on an ancient device called a Blackberry! Remember them? Both my thumbs would have been going ten to the dozen! After all, loose ends must be tied up. Ironic given I was about to have 3 feet of small intestine and my ascending colon removed and rejoined 
Not a good start!
Surgical Prep
As I said above, I had to be admitted 24 hours before the surgery, this was mainly to start the peri-operative octreotide infusion to de-risk the possibility of ‘hormonal crisis‘ which is a well-known risk with symptomatic NET patients with carcinoid syndrome which they found at diagnosis. It still wasn’t fully under control with daily octreotide.
And relax…..
After my meal, it’s now just a waiting game. Chris was with me for a while, and I have a TV! Shortly after my evening meal, a nurse arrived to hook me up to octreotide on drip. I had already experienced this prior to a liver embolization a month previously. But it still amazed me how much octreotide was in one of those cylinders (£££££).
In hindsight, I wish I had kept a proper diary of what turned out to be 18 days in hospital.
Four years after that event, I compiled this two part story using my memory and letters and test results etc.
The surgery, which lasted 9 hours, was really in two parts, firstly to get rid of my primary in the small intestine plus any accessible locoregional stuff. I was due into the operating room (OR) in the morning, but this was pushed back to the afternoon, I guess my surgeon had an unforeseen emergency, I never did ask. I wasn’t too fussed, except I had to fast for longer!
When my time came, I refused the offer of a wheelchair and walked to the OR accompanied by one of my new friends from the ward, I was to get to know these fantastic Nurses over the coming days.
Basically, the surgeon removed 3 feet of my small intestine, carried out a right hemicolectomy, and also removed ‘oodles’ of lymph nodes in the mesenteric region, with careful blood vessel reconstruction required. However, my case was not normal. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels and required assistance from a vascular surgeon. This is an issue that reared its ugly head again in 2018 – you can find an update by clicking here.
I’ve written extensively about this but you can read a summary here. I added some ‘flowery descriptions’ combined with humour!
I woke up from the anaesthesia just after midnight on 10th November, spookily I woke up on World Neuroendocrine Cancer Day.
Chris had gone home but came back around midnight when she got the call the surgery was complete. I will never forget the sensation of the anaesthesia kicking in, the counting ……. and then next thing you wake up and it’s done. Except you are pinned to the bed with numerous tubes going in and out and bleeping machines! But one thing that was quite vivid, was someone holding my hand. It was Chris of course ❤️ We chatted, I asked what happened and then started to fall asleep shortly after! I suggested she go home and come back later, one of us had to be lucid and I was on morphine.
Later that night, I had memories of being woken up by the nurses in HDU (high dependency unit) who were tending to the tubes, the drips, etc etc. I got to know them quite well over the next day or two. Some of the stories in the two part blog above contains many references to the nurses – they were fantastic.
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