I finally made 10 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area of the mesentery and in the retroperitoneal cavity near major blood vessels including the aorta and inferior vena cava, an issue which itself was life threatening. Some of these issues remain today – you can take a quick look at my clinical history here.
The lead up to my diagnosis was a rocky road, albeit I travelled that road fairly swiftly compared to some. In May 2010, some abnormal blood tests were discovered, in June 2010, I went on holiday such was my indifference to the whole affair. In some ways I was happy not to know about the plethora of medical issues going on inside my body while I sipped piña coladas on the Barbadian beaches. My return to UK set the ball rolling and the ‘eureka’ moment came on 8th July with a CT scan. During what seemed an endless round of tests, a liver biopsy (Grade 2) provided the evidence. But the 2 days prior to meeting an Oncologist in Bournemouth on Monday 26th July 2010 were spent in the very same hospital after being admitted for sever shoulder pain. If you missed my Facebook updates providing more detail behind this crazy weekend, you can read them here – Saturday 24th July 2010 and Sunday 24th July 2010.
26th July 2010
I was discharged after the doctor’s rounds. I met a nice gastroenterologist who was leading a party of other doctors and healthcare professionals around the ward. He had looked at the scan conducted the day before and compared it with the one from 8th July – they compared nicely apparently. He gave me a letter which I was to hand to the Oncologist when I met him later that day. I read it of course! Chris and I went home to consider the events and I rested for the remainder of the day before returning for the 4pm appointment. I don’t remember much except that it was one of the hottest days of the year and felt quite underdressed as I turned up in T shirt etc. The news was dispensed. Surgery was mentioned and I was to be referred to a NET expert surgeon based in Southampton. Chemo was mentioned but looking at letters that followed, he may have meant Everolimus. I was also to await a nuclear scan appointment plus some other tests. We headed home to discuss how we would tell family etc. In fact we stopped off at our daughter’s on the way back, they were close to the hospital. My son and his family were the next on the list.
There’s no doubt it was an event that changed my life although I tried to hide it for the first few years, seeking normality but eventually settling for something new, something different. The most radical change was stopping work in 2014, I was fortunate that I was in a position to do so, at an age when it became feasible – some don’t always have that luxury. That brought new challenges but I adapted well to that situation, as did my close family.
I remain thankful to still be here and I’d like to think another 10 years is possible but I’ll settle for my state pension start date of 30th October 2021 as the next line in the sand. I’m still here.
Take care all.
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