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Ronny was diagnosed with Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, iron deficiency anaemia and facial flushing (Carcinoid Syndrome).
Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.
For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests. As I go on living with my cancer, that tempo doesn’t seem to have gone away. Every 4-6 months (and sometimes in between too) I undergo a plethora of tests and appointments and I feel I'm stuck in this perpetual change – sometimes I'm not sure what to expect or what’s going to happen next! I guess that living with an incurable cancer is not so much about “getting back to normal” but rather what’s normal for me now. I suspect this is the case for many incurable Cancer patients.
I saw a post on one of the forums last week - the question was "what does stable mean". The answer may seem obvious but one reputable website defines it as follows "A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable". Worth noting that "not changing" can also mean 'not decreasing'.
And so at yesterday's half yearly meeting with my Multidisciplinary Team (MDT), "stable" was once again the conclusion. I found myself agreeing on the basis there is no remnant tumour growth and my biochemistry results are unremarkable (don't you just love those medical terms?).
Stable is my new normal!
However ....... (there's always one of these with Neuroendocrine Cancer), I have two issues, one ongoing and one new which are potential bumps on the road ahead (at least the ones I can see).
Oh, and apparently I look well :-)
Thanks for listening.
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Great, I'd like to tweet this with the link directly to Macmillan. Is there a particular Macmillan twitter handle to copy in for a retweet?
You guys are great
Our twitter handle is @macmillancancer
Thanks Ronny! We think you're pretty awesome too
Jess - you are too kind! Tried but I guess they were busy doing the NPower LoL publicity. I did get approached if I wanted to attend that but in the end I wasn't called forward, perhaps you guys helped get my name on the list? Not sure. It is quite dificult to get a retweet from the big cancers!Just about to publish another blog where I mention the Macmillan toilet card scheme!
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