I woke up on World NET Day

I woke up on World NET Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 1 year after 2 x surgery Macmillan Cancer Support featured this post CKN featured this post It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body.  I can still remember the feeling today; it was like I was pinned to…
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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!  Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding.One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are 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 can be found in the breast,…
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Neuroendocrine Cancer – shh! Can you hear it? (…..I didn’t)

Neuroendocrine Cancer – shh! Can you hear it? (…..I didn’t)

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_4472" align="aligncenter" width="550"] shh! - can you hear it? I didn't.[/caption]The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY!In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome…
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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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My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_13469" align="alignnone" width="720"] Seriously![/caption] When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns' :-)  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......). As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain.  One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur.  If you've had abdominal surgery, you might be having to deal…
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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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My blog goes International!

Awareness, Patient Advocacy
One of the most interesting statistics in my blog app is the total number of views recorded each day.  It even breaks the total down into which posts were most viewed and which countries the viewers were from (but please note it does not identify the name or any other details of viewers). I'm always very pleased to have readers from overseas locations - I hope they enjoy reading my blog and find it useful. To date, these include readers from USA, Australia, Canada, New Zealand, Barbados, Belize, France, Germany, Switzerland, Belgium, Netherlands, Luxembourg, Portugal, Austria, UAE, Bahrain, Philippines, Nigeria, Kenya, Croatia, Ireland, Sweden, Italy, Japan, Czech Republic. Neuroendocrine Cancer is not unique to UK, it's an International disease. If you research, you will find Neuroendocrine Support groups in most countries. There…
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Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment
I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.   I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…
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Dr Google will see you now

Dr Google will see you now

Awareness, Humour, Patient Advocacy, Survivorship
  Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn't. As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for patient issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise how…
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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 'Diagnosis'.  The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests and now referred to an Oncologist.I felt in controlRewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre.  I felt in control.  I'm happy as a pig in the proverbial!  My annual Asthma clinic comes along and it's an opportunity to work at home for the day....yahoo - no commuting! "Hi Ronny" - "Hi Liz". Blah Blah Blah. However, glad…
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