12 years – I’m still here!

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I finally made 12 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 47 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 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 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 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 12 years is possible, but I’ll settle for my 70th birthday 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. Diagnostic Dilemmas in July 2010 – click here

4. 48 hours before diagnosisclick here.


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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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14 thoughts on “12 years – I’m still here!

  • Congrats! I’ll hit the 9 year mark at the end of next month and my 70th birthday is just over two months away… both milestones I didn’t expect to make when I was first diagnosed. Thank you for showing us all that it’s possible to live a quality life in spite of this disease!

  • Paul McClure

    Incredible reading Ronny 12 years your amazing as is Chris As my wifey Allie ( Alison) and I agree. Thank You for sharing all this information and the inspiration you both give to so many. Paul

  • Karen Pope

    Thank you for sharing your journey and all the information concerning NETs! Your story gives me hope and encouragement as I go through my journey. Here’s to many more years!!

  • Do you an amazing job at 12 years of cancer showing by example that life goes on. I’m 14 years into diagnosis without the energy you have. Ironically I also had a tumor in my left arm pit (not a lymph node) that I insisted be removed but no one thought was cancer. Yes, be our own advocate.

  • Mona Winiger

    I am so glad that you have shared your journey with so many NET patients and family members. You give us all inspiration!
    Our daughter was diagnosed at 24 with a huge NET in her liver (primary unknown). The first biopsy was sent to MD Anderson and came back with high numbers. We thought her life was almost over. They removed 1/2 of her liver and were so thorough in searching for the primary. 3 1/2 years later, it still hasn’t shown up. Our surgeon had part of her tumor sent to M D Anderson again. It showed a much lower number. She was monitored every 4 months for 3 years.. at MDA, Indianapolis IN, and now in our hometown. We are blessed to now have the PET with Copper 10 miles from us! Now she will be monitored yearly.
    We went from thinking she had months to hoping she lives decades with this. We are blessed. Your stories and those of others give us hope that she will be around for a long time!
    It’s very odd that this is supposedly a rare cancer. My best friend has it (more aggressive). She has fought it off 3 times, also losing a big portion of her liver in the process. I also know 3 others: lung, pancreas (found while doing scans for heart issues), and intestines. I believe it is much more common than expected.
    Just wanted to thank you for giving us all hope that NET patients can lead a relatively normal life and can survive for years!
    Blessings for continued good health and a long, happy life for you!

    Mona

  • Margot Henery

    congrats! … keep it up! just bought you 3 cups of tea, hoping you can make it a bit of a special treat to celebrate … cheers!

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