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 (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 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’.
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’). 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.
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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.
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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!