Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience, and we met some really interesting people on our 6-day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what was going on inside their heads and bodies.Visible Illness can have awareness benefitsConversely in 2018, I was absolutely humbled when I met a…
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Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide:  10 more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015.  In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama's 'four more years' tweet was the biggest retweeted post ever up to that point after he thanked his 22 million…
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Surgery – the gift that keeps on giving

Survivorship, Treatment
As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I'm still alive and kicking and don't feel too…
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Every Day is World Neuroendocrine Cancer Day!

Every Day is World Neuroendocrine Cancer 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.  You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer".  And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…
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I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
1 year after 2 x surgery 5 years after 3 surgeries 10 years after diagnosis 11 years after first 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 the bed and I was completely…
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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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My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
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 with issue. Many Neuroendocrine Tumour (NET)…
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My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship
There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life.I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was nearly in 2010 but I have a lot of people to thank for some excellent progress.  My son & daughter's families have all been there for me and although my 4 grandsons don't quite understand the situation, their presence in my life is a great tonic.Perhaps…
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Dr Google will see you now

Dr Google will see you now

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 own 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 many patient reported 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…
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Shrek and Princess Fiona

Shrek and Princess Fiona

Humour, Inspiration, Survivorship
I was looking through some old photographs and came across this one I thought you guys might like.  It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time.This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex paratrooper) and his lovely wife Babs.  Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit 'peaky' on the plane. Despite a…
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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship
The clouds are gathering. 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.  There were many hints along the way.   I felt in control.Rewind 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 Liz was taking it seriously - I just wanted…
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Blogging is a full-time job – and I walked right into it!

Blogging is a full-time job – and I walked right into it!

Inspiration, Living with Neuroendocrine Cancer, Survivorship
The original postThis is a new skill so bear with me, please!  The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris.The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway.The walk is for two purposes:1.   To raise awareness of Neuroendocrine Cancer2.  To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours).As a lead-up to the actual walk itself, I'll be blogging daily with an A to Z of my life-changing experience together with any interesting stories arising from the training and preparation for the walk itself.  During the period of the walk, the daily blogs will focus on progress along the route.  I hope to…
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