15 years since diagnosis, I’m still here

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I finally made 15 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, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris, my wife of 50 years. 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 midgut Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area of the mesentery and less commonly, 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, a bit of it threatens one of my ureters – 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 and 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 the UK set the ball rolling and the ‘eureka’ moment came on 8th July with a CT scan (“what are you doing this afternoon“).  During what seemed an endless round of tests, a liver biopsy (Grade 2) provided concrete 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 severe shoulder pain.  You can read my no holds barred summary with some serious but also humorous memories by clicking here. The rocky road to diagnosis even included a 48-hour hospital stay shortly after a liver biopsy. I was discharged on the morning of 26th July 2010 only to return later that same day for my formal diagnosis.  Read more about that 48-hour period by clicking here or on the picture below.

D Day – 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 (it’s a teaching hospital).  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 got a copy 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 or a TACE. 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 daughters which was on the way back, they live close to the hospital.  My son and his family were the next on the list.

Summary

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 15 years might be possible, but I’ll settle for my 70th birthday later this year as the next line in the sand. I’m still here Take care all. Ronny

You may also be interested in:

1. Diagnosis – I’m no longer in control – click here.

2. Don’t be cavalier with a cancer diagnosis – click here.

3. Diagnostic Dilemmas in July 2010 – click here

4.  My Diagnosis and Treatment History – click here. 

On the cancer journey, don’t forget to live your life

Resource links

1. It’s useful to know about the range of tumour markers and hormone markers – for a summary, read more here. 2. Spotlight on Carcinoid Syndrome from Ronny Allan.  Click here. 3.  ENETS Guidance Paper on Carcinoid Syndrome.  Click here.

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. Thanks for reading.

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Ronny

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