I’ve been living with NETs since 26th July 2010
……. well, since at least the earliest day I can use on clinical record. Clearly, I had been living with NETs before that, I just didn’t know for how long and I never will – it no longer matters. The clues were there but why would I make a correlation to a disease I had never head of?
I have no recollections of difficulties before diagnosis as I was cracking on with my successful post military career, doing OK, extremely busy (and therefore ignoring my health!). The symptoms of flushing were 6-9 months before diagnosis and the intermittent diarrhea probably about 18-24 months prior. Some people don’t know they are flushing so I guess that symptom might have been longer but the flushing period I do remember felt like pins and needles, thus why it was weird but memorable. But I wouldn’t say it was a difficult period. Both were symptoms I had no history of and despite this change, I cracked on. I did get a colonoscopy in the summer of 2008 after reporting a few days of dark stool, nothing was reported other than some minor diverticulosis, a common issue when you get older. Nothing to see here, move along.
Between 26th July 2010 and Spring 2012, I had 3 surgeries and was 15 months into Lanreotide. It was a tough period. Particularly the shock of being diagnosed with a stage IV cancer but even so, I continued to work my full-time job with a generous and understanding employer. I felt strong enough to tackle both challenges. So why not?
In 2013 things got tougher as I mentally and physically grappled with the ability to work my demanding job while living with a demanding cancer (demanding in the sense that I could not become complacent and the side effects compete with my attention to work). That was a tough year but in 2014, I totally changed my life by retiring early – one of the biggest decisions of my life.
Holidays then became more frequent; I became fitter after walking Hadrian’s Wall. I eventually found enough activities to keep me busy, particularly my brain. My blog took off in 2015 and I’ve been building up my social media footprint ever since. I appear to have become a voice for change and someone once described me as a ‘positive disruptor’ (a phrase for someone who challenges the status quo). I guess that was in reference to my vocal opposition to animal icons, the denial about the real epidemiology status of Neuroendocrine Neoplasms; and the use of aged terms such as ‘carcinoid‘. The last 11 years have not changed my mind on these issues (not one single bit). Still, it has not stopped the antagonists from trolling me now and then.
But retiring and blogging does not cure cancer and things were still a bit tough, regular scans and tests unearthed new issues to watch (and worry about). And of course, the 28-day lanreotide intervals meant the calendar always had to be consulted before planning anything else.
Being a positive disruptor is not easy either
As above, I’m described as a positive disruptor. I think I fit that description given I’m quite vocal for change, particularly a change of thinking and a change of message. Being that type of advocate has been tough. It’s not easy because many people resistant to change! Many are happy to just plod along with the ‘herd’. Some have become quite hostile to my online, even though I produce glaring examples citing why we need to take another approach (something they fail to produce for the antiquated approach).
In a similar vein, I was once accused of being too positive, some people don’t like that. I’m not one for wallowing in pity and won’t be accepting invites to pity parties. It’s not that I don’t care (because I do) it’s just that I don’t want anyone to take pity on me, I don’t want to wallow in pity for myself. I don’t do pity parties – I shouldn’t need to apologise for that. I read inspirational posts and comments daily in my large group. I suspect most people in my group wouldn’t accuse me of not caring given the contributary and helpful comments I make on many member’s posts. I have the accolades to prove it.
Unbelievably, I was also once accused of being a fake on the basis that the way I was living my life in a positive way, there was no way I had stage IV NETs and it can’t be as easy as I appeared to be portraying it. Perhaps I caught that person on a bad day, or perhaps that person overlooked the fact that not every person with Stage IV NET publishes the way they live – otherwise they would have found that many of us do have pretty normal lives other than the surveillance activities I mentioned above. I cannot be alone in that scenario.
And not everyone appreciates my ‘disruptor’ activity via my blog – ah well if you don’t like it, swipe and move on. Some of them hate that I have the biggest following (they refuse to ‘go figure’ why). But those who troll me or brief against me; or just give me the silent treatment because they disagree with my positivity and my awareness beliefs, you won’t change my mind or influence me. As this happens in badly administered and moderated groups where I am not there to defend myself, know this trolls and bullies, I won’t change things I believe in, just to be part of a ‘herd’ going nowhere. Fortunately the trolls and bullies are mostly shut down by decent people. Even in my absence, others will defend me and to those people who stood up to them in my absence, I thank you!
But one thing ……nobody said it was easy, no one ever said it would be this hard, not even me!
Paraphrased from some of the words of the song ‘The Scientist’ from Coldplay
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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.
Click here and answer all questions to join my private Facebook group
Facebook
Twitter
WordPress
Instagram
Thanks for reading.
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
- 2026 Surveillance Update from Ronny Allan: “See you in 12 months”
It’s only a couple of weeks since I celebrated my 16th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2 on 26th July 2010. Thinking back to that period of my life, I’m happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at… Read more: 2026 Surveillance Update from Ronny Allan: “See you in 12 months” - Spotlight: Selenium in Neuroendocrine Tumours (NETs)
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET‑related factors might influence them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs vary widely. If you… Read more: Spotlight: Selenium in Neuroendocrine Tumours (NETs) - Spotlight: Potassium in Neuroendocrine Tumours (NETs)
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.… Read more: Spotlight: Potassium in Neuroendocrine Tumours (NETs) - Spotlight: Magnesium in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you… Read more: Spotlight: Magnesium in Neuroendocrine Tumours (NETs) - Ronny Allan’s Newsletter covering July 2026
Summary of July 2026 on RonnyAllan.NET July was similar to the other months of this year but views down on the previous two months due to 50% of the month spent on holiday. Still a reasonable blog performance. Other key targets met were three more editions of the Spotlight series on vitamins and minerals. See… Read more: Ronny Allan’s Newsletter covering July 2026 - 16 years since diagnosis, I’m still here
I finally made 16 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 […]
- Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms
Intro Cushing’s syndrome is one of the most challenging hormonal complications seen in people with neuroendocrine neoplasms (NENs). It can be subtle, severe, or even life‑threatening — and it is often misunderstood. Many patients struggle for months or years before receiving a correct diagnosis, partly because the symptoms overlap with everyday conditions such as weight… Read more: Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms - 14th July 2026 – Ronny Allan hits 3 million blog views!
Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing. When I first set up this blog in April 2014, it was just to help spread awareness (….and collect a few pennies) whilst I was walking the 84 miles of… Read more: 14th July 2026 – Ronny Allan hits 3 million blog views! - Spotlight: Zinc in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have… Read more: Spotlight: Zinc in Neuroendocrine Tumours (NETs) - Neuroendocrine Tumours – Iron
Disclaimer: This Spotlight provides general educational information about Iron. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or chronic blood loss. Always consult your medical team before making changes to supplements or nutrition. Before I knew I had metastatic Neuroendocrine Tumours, I was diagnosed… Read more: Neuroendocrine Tumours – Iron
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts sent to your email.
My neighbour said to me the other day: “You don’t want to look too well.” I don’t apologise for putting in the effort to be well. Most days I don’t feel well but do I need to look like hell to satisfy the ignorant that cancer survivors don’t all look like dead people walking!