When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It’s not just knowing where to look, it’s also about the interpretation and knowing what is current and what is out of date. As a novice NET patient, I found out my 5-year survival rate was only 38%. It looked like a credible site but I now know it was totally out of date! I’m still here!
Fast forward and I now confidently prowl the internet, I know where to look, I know what to ignore, I know what is current and what is out of date. I understand the disease and am able to put most things into context. Even today with much more positive stuff out there about new treatments and much better prognostic forecasts, I suspect for newly diagnosed patients, it will still be scary.
When I established my blog and then my ‘front end’ supporting Facebook site, I decided to put this experience to good use to help others (including myself!). I like to help people navigate the muddy and murky waters of Neuroendocrine Cancer. This can bring with it some tough questions so I’m always careful to manage expectations. Fortunately, I have a number of ‘go to’ sites, people and organisations that I use once I’ve established someone’s requirements.
Other than my own group, I’m often reluctant to recommend particular patient forums to anyone as I think many of them can fall into the scary category, mainly caused by a lack of robust moderation to prevent myth spreading. Some are frighteningly good but most are good at frightening based on my own experience.
Despite Macmillan not having a particularly strong Neuroendocrine Cancer section in their own online community, I was still delighted to be accepted as one of their ‘cancer voices’. It was quite exciting that I was chosen from hundreds of others, to feature in their ‘Community Information’ campaign poster which you can see as the header picture in this blog. During the photo shoot, I also got to meet the fantastic staff from Macmillan Cancer Information and Brand Awareness departments.
Finally, during that campaign, Macmillan had advertising space booked my face was there to be seen by many people driving/walking through the UK streets or stood at a bus stop. I received quite a few pictures from people who spotted me, I even found one on the side of a dustbin in a shopping centre in my home town of Dundee……. now that is scary!
Thanks for listening
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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