The C Word

General
'The C Word' or 'The Big C' - the subject which must not be discussed.  Or is this now an out of date phrase?  I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word).  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission. We now have much better tools to discover and treat cancer. Moreover, because we are increasingly open about cancer, there is more awareness. According to Cancer Research UK, as we all live longer, more than one…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to…
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The trouble with the ‘NET’ – Part 1 – Cancer Myths

The trouble with the ‘NET’ – Part 1 – Cancer Myths

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey.  In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news.  Unfortunately social media 'misinformation'…
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Intelligent patients – just what the doctor didn’t order

General
  [caption id="attachment_5440" align="aligncenter" width="309"] This blog was featured by Carcinoid Cancer Foundation[/caption]   I'm extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation's blog site! I've been following these guys since I was diagnosed.  They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet. The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit organization chartered by the State of New York for the purpose of encouraging and supporting research and education…
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Disobedient Objects

General
[caption id="attachment_2510" align="alignleft" width="300"] Disobedient Object[/caption] My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington.  A particular display caught my eye entitled "Disobedient Objects" and I immediately thought it had a scientific sound to it.  Imagining a set of everyday objects which somehow didn't behave as you would expect, it sounded great fun so I wandered in.  How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change.  The term 'disobedient' was used as these objects were designed by grassroots social movements mostly for use in street protests.  These ranged from bike locks for chaining your head to a fence to makeshift tear gas masks; to large inflatable cobblestones designed to act as a…
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Every Day is World NET Day!

Every Day is World NET Day!

Awareness, Inspiration, Patient Advocacy, Survivorship
Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me.  Spookily, I even woke up on 10 Nov 2010 after a major 9 hour surgery.  Read about this here - I even woke up on November 10th after major surgery. The build up to these events normally doesn't start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world…
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The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION.  Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based.  I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be!  I can now totally understand why so many Neuroendocrine Tumour (NET) patients have become their own advocates and why they have to shout quite loud for recognition and understanding.One of the key facets of NETs is that it is not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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If your Doctors don’t suspect something, they won’t detect anything!

If your Doctors don’t suspect something, they won’t detect anything!

Awareness, Patient Advocacy
Opinion: One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose meaning that awareness and education needs to extend from the general population into healthcare professionals at all levels. The latter is a challenge as first line physicians battle to deal with thousands of different conditions many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient. Neuroendocrne Neoplasms - Under-diagnosed or Under-reported? Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a…
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Glass half full or half empty?

Inspiration, Living with Neuroendocrine Cancer
Most people have probably heard of the saying "is your glass half empty or half full".  If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way.  I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I'm only human and I've been in some dark places in the last 5 years since diagnosis. However, I believe to continuously be in 'half empty mode' can have a…
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Hadrian’s Wall Day 6 – Mission Complete!

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer
  [caption id="attachment_1144" align="alignnone" width="2560"] Sunset over the Solway Firth (Scotland in the distance)[/caption] The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway.  We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room.  It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born. Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it's flat but the first half is a wonderful…
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