11 years – I’m still here!

I finally made 11 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.  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, 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 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 the 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 humourous memories by clicking here.

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.  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 11 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.

Ronny

You may also be interested in:

1. Diagnosis – I’m no longer in controlclick here.

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

3. I’m still here click here.

4. 48 hours before diagnosisclick here

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Thanks for reading.

Ronny


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

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7 thoughts on “11 years – I’m still here!

  • You have achieved a great deal in those 11 years Ronny, and you should be very proud of yourself. I can’t think of a better patient advocate for this than you. Thank you🤗

  • Lisa Sommers

    Ronny, keep doing the amazing work you do! And, thanks for always “listening” and responding to the untold number of questions you are asked on a daily basis.

  • Ron Sekula

    Congrats! Eleven years! Good for you. And you’re still here. Me too. But only 21 months for me. Nevertheless, I’m still here as well. You are SUCH an inspiration for us all. Thank You so much for what you do.

  • Margaret Williams

    Ronny I have been a silent member of your group for 2yrs. You are the best source of information for patients with neuroendocrine cancer and I would like to say thank you , you are an inspiration to us . Please keep the info coming, it’s always positive and shows a genuine caring for your fellow NE followers.

I love comments - feel free!

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