I’ve been living with NETs since 26th July 2010

……. 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 (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.

Between 26th July and stability – probably around summer 2012 following 3 surgeries. That was tough, particularly the shock of being diagnosed with a stage IV cancer but I continued to work my full-time job with a generous and understanding employer.

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 – biggest decision of my life.

Holidays then became more frequent; I became fitter after walking Hadrian’s Wall. I eventually found enough 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 10 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. Although, after 15 years of experience, I now regularly ‘flex’ that period to fit it with my plans.