The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship
When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth noting that many people…
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I have walked 500 miles and I will walk 500 more (….. sing along)

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021.  I can now confirm, I'm halfway there in 5 months.  I have buffer time ..... but only if I keep going.  By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014.  500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite but working on it (haha).  I have several incentives, including:…
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Lanreotide:  Ten more years please!

Lanreotide: Ten more years please!

Inspiration, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Back in February 2015, I wrote an article called "Four more years" and the title came from an election campaign happening at the time when I had been on Lanreotide for approximately four years.  Inspired by this campaign slogan, I too wanted four more years and crafted the blog post.However, I was underselling myself as I've now hit 10 years of Lanreotide on 9th December 2020.  On that day in 2010, I was still recovering from major surgery and hadn't had any somatostatin analogues since leaving hospital on 26th Nov.  Prior to surgery, I had been taking daily shots of Octreotide which did have the effect of reducing the symptoms…
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If it’s not raining, it’s not training! (part 2)

If it’s not raining, it’s not training! (part 2)

Inspiration, Survivorship
As someone who was born and raised in the Scotland, and lived most of my life in the UK, I'm no stranger to inclement weather.  In my 29 years years in the military, the weather was no excuse to do nothing, whether it was training or the real thing. They gave us wet weather clothing after all!  There is a saying in the UK army and it goes like this "If it's not raining, it's not training".  In classic British pragmatism, it decodes to "raining is normal so get on with it".  In fact, one of my oldest army friends cannot wait for the torrential rain, he much prefers it to the sun!  Read his blog here.  We've been caught out over the years, for example back in 2016, a…
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Piss off cancer – I’m 65 (…. and a half)

Piss off cancer – I’m 65 (…. and a half)

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was 54 years and 9 months old at diagnosis.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading and other damage that was accumulated via various tests, checks and scans; is that my body had been slowly dying.  Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate.  It's amazing to think something that would eventually kill me without intervention, didn't have a much grander announcement than the one presented to me in 2010 (or had I been…
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Paul Hunter – Snooker champion and Neuroendocrine Cancer patient.  Died 9th October 2006

Paul Hunter – Snooker champion and Neuroendocrine Cancer patient. Died 9th October 2006

Inspiration
Paul Hunter, three-time Masters snooker champion was just 27 when he fell victim to Neuroendocrine Cancer at the peak of his powers and popularity. At just 25, he'd won the third Masters title, a feat which, at the time, had been achieved by only two other players in the world. He was dubbed the "Beckham of the Baize" because of his chiselled good looks and long, blond hair (a reference to famous footballer David Beckham).This young age is unlike the majority of Neuroendocrine Cancer patients who are diagnosed in their later years. I took to the internet to find out more. Although there are many sites and articles confirming the link to "Neuroendocrine Tumours" in the annals of the internet, many sites state "stomach cancer" (some as late as 2017)…
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I don’t look sick enough, sorry not sorry. 

I don’t look sick enough, sorry not sorry. 

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Despite earlier diagnoses via more technology and screening, many people have a perception about people with cancer, it includes many things including but not limited to, lack of hair, ill in bed and being infused regularly with chemotherapy.  Another reception is that they die.  All of that is clearly terrible but it's not the norm. Many people live with cancer, many people with cancer go to work many people go on holiday, many people with cancer do normal stuff. The crazy thing about this perception is that the cancer story is changing, more and more of us are going to come into contact with cancer, either through our own experience or…
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Flower power and serotonin

Flower power and serotonin

Inspiration, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A memory from 5 years ago is this sunflower which I planted with my own hands and it grew taller than me (not difficult) and even taller than my garden fence (more difficult).  Of course I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it.  Nonetheless, I still felt a remarkably close association to the outcome! My most liked Facebook posts in 2020 (the year of COVID) relates to flower pictures and there's a reason flowers proved to be more popular than my other posts. Flowers, particularly with vibrant colour,…
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10 years, I’m still here

10 years, I’m still here

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I finally made 10 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit.  It was incurable.  And, unique to serotonin secreting…
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Don’t be cavalier with a cancer diagnosis

Don’t be cavalier with a cancer diagnosis

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  [caption id="attachment_19230" align="aligncenter" width="640"] Denial[/caption]I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.  In fact it happened on 24th July 2010, 10 years to the date this post was published.  (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill.  In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I…
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Post COVID lockdown – the new normal is not normal

Post COVID lockdown – the new normal is not normal

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This new normal just isn't normal! I'm lucky to have beautiful forests to my east and west but to my south is probably the best beach coastline in UK. We decided to walk along a section of that award winning 7 mile bay. But we went via a shop. I had to return something purchased shortly before lockdown and like most shops which shut, this one extended the returns period due to COVID-19. The shop was a big one and easy to distance, but the preparations were very good indeed. I donned a face covering and upon entering, I was instructed to wash my hands with sanitiser before proceeding to…
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We Remember – A message of hope in the time of the Coronavirus!

We Remember – A message of hope in the time of the Coronavirus!

Inspiration
I really like this video because it covers the positives of the coronavirus crisis, despite the daily gloom. At the time of writing, it's clear things will get worse before they improve. However, this crisis will end sometime, hopefully soon; and we'll look back on this period with multiple emotions. Of course we will be sad about those who died and for the lives that were changed. But we will also look back fondly at how we dealt with these changes, the new ways of thinking, new outlooks, new friends, new relationships and new communities. Personally, I can't wait for this crisis to be a distant memory but we should all remember the positive things happening now and that will hopefully be maintained going forward. There will be new communities…
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Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient Advocacy
This story is about my friend Kirsty. She lives with metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands - (read more here). She has an amazing blog which is not just for Pheochromocytomas or even just for Neuroendocrine Cancer patients and supporters, because she has not let her condition stop her from doing normal stuff and amazing stuff. The challenges she has faced, and still facing, are very similar to many cancer patients. Kirsty is actually one of the moderators in my private Facebook group, she found me and put herself forward to help out. My group international in compostion working 24/7, so her location in New Zealand was perfect, filling in the North America/Europe normal 'sleepy' time around 3am - 7am UK time. In 2012,…
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Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused.…
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The Other 5 E’s

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer
Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many days out). [caption id="attachment_14267" align="aligncenter" width="960"] Motivation is often difficult[/caption]ExerciseEverywhere you look, there are experts telling us that exercise is good…
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I’m not sick, I just have cancer

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label.…
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From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy
I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was "The shock effect never wears off".  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as 'Patient E'. I just felt that someone somewhere might learn something…
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“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

Inspiration, Living with Neuroendocrine Cancer
Judy Golz is a retired registered nurse — she’s also a neuroendocrine cancer survivor.  Like many nurses who get cancer, their experience in working in the healthcare industry possibly helps get a quicker diagnosis, possibly because they can recognise symptoms and likely differential diagnoses and it possibly helps knowing how the healthcare system works. But with uncommon and complex diseases, it's not always that straightforward, even for a nurse or any other healthcare professional.  But Judy makes an excellent point about the quantity and quality of medical information now out there, including for Neuroendocrine Cancer and suggested she would be in a better place for self-diagnosis today. Two things spring to mind about this story. Neuroendocrine Cancer is such a complex disease, it can often be hard for healthcare professionals to…
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Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled "Letter from America".  This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through…
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Living with Cancer – Worrier or Warrior?

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers.  I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way.  I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing?  However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective. Warriors I used to do that for a living…
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Neuroendocrine Cancer – on your bike!

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_13876" align="aligncenter" width="2592"] Get on your bike![/caption] There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike").  It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home in 2012, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year.  A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use.  In fact, Chris got a new one out of the deal! I'm reasonably fit (considering) but finding it so easy to opt for the sofa and there's always something worth watching on…
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Aretha Franklin 1942-2018: Neuroendocrine Cancer

Aretha Franklin 1942-2018: Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said "Franklin's official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin's oncologist, Dr. Philip Phillips of Karmanos Cancer Institute" in Detroit. Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer.  All of these incorrect posts will now be embedded in the bowels of the internet and used for years to…
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I wish I had another cancer

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I'm thankful to Pancreatic Cancer Action for featuring this article here.AN OPINION POSTI’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, my friend Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse…
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Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition for almost 8 years and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine. So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable! Take a break if you need one. Thanks for reading Ronny…
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Shame on you!

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I don't look ill.  I didn't even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer.  People have even told me I look better than many people my age who do not have an incurable disease!  There's a bit of me which is very happy with that predicament, although I'd rather look less good and not have cancer. Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don't look ill but I know they have a life threatening disease and things could change quickly.  For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful.  Some…
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Ronny Allan – Top 6 posts of 2017

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis…
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The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Patient stories are key to any awareness campaign.  Nothing like a human being standing up and letting you know about their experience.  Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…
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Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] [caption id="attachment_4318" align="aligncenter" width="500"] It's about others too[/caption] Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I…
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Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET   Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life! Please Share this post Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email
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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  OPINIONThere's a lot of inaccurate and out of date information out there. Some is just a lack of understanding, some caused by out of date websites, often as a result of patient forum myth spreading. Some can only be described as propaganda. Some of it even comes from doctors and NET advocate organisations. Myth 1: All Neuroendocrine Tumours are benignNot true. By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'. Sure, some NETs will be benign but a tumours which spreads away…
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Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption]   Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…
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25 Life Lessons From a Two-Time Cancer Survivor

25 Life Lessons From a Two-Time Cancer Survivor

Inspiration, Survivorship
Sometimes, a blog post comes along and it just resonates!  I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below. Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated them into one very powerful list.  I'm not suggesting they all apply to everyone but perhaps even a 'pick n mix' approach would be useful.  For example, I couldn't do number 8…
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Things not to say to someone with cancer

Things not to say to someone with cancer

Inspiration, Survivorship
[caption id="attachment_9184" align="aligncenter" width="592"] Graphics courtesy of https://emilymcdowell.com/[/caption] This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere!  Personally, I don't tend to get too excited about it, although there can be extremes.  Most people (not all) are just stumped to know exactly what to say.  Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never met, you don't know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator,…
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Keep your lights burning

Keep your lights burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday.  And 'Bravado' is not only acceptable, it's mandatory! A week later, I received a very nice Christmas card from my old friend with a message which included "...... the old light is still burning brightly". It was a metaphor but something I…
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Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Inspiration, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output.  Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for the updates!  I'll expand this blog once the dust settles as this award opens up new avenues for the Neuroendocrine Cancer (NETs) and I'll be involved in new and exciting…
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Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

Inspiration
  I've never used the reblog button until now ............ this is such a powerful post, so I wanted those following me on WordPress or email, and are not on Facebook, to have the opportunity to read it. The post actually read out by Lindsay on YouTube https://www.youtube.com/watch?v=c8vUETN8XVE Read the original article here - CLICK HERE Sometimes people don't "get" cancer until the "get" it - read more here. Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for…
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Neuroendocrine Cancer – Exciting Times Ahead!  

Neuroendocrine Cancer – Exciting Times Ahead!  

Inspiration, Survivorship, Treatment
In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly.  However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time.  There's even more in the pipeline and I'm hoping to continue to bring you news of new stuff as I have been doing for the last year. Some of these new diagnostics and treatments will benefit eligible patients who are…
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Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, 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 Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read more. I've mentioned Steve Jobs a few times previously, mainly…
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“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the 'perfect picture of health'.  She…
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Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_6724" align="aligncenter" width="2896"] Medicine![/caption] "yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "we must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500" campaign which fortunately and timely sparked us into gear. As a patient with incurable cancer, life can be tough on the body and mind. However,…
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Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

Inspiration, Living with Neuroendocrine Cancer, Survivorship
Life after cancer is about more than just survival. It’s not just the length of life that matters, but also the quality of that life. Join us as we #CelebrateLife and raise awareness of the challenges of cancer survivorship on National Cancer Survivors Day, June 6. #NCSD2021 For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was gong to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by…
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Exercise and Cancer: Forward is Forward

Inspiration
One of the very first blog posts I wrote was about exercise. Basically I said it was like medicine and I have not changed that view much.  Exercise improves mental health by reducing anxiety, depression, and negative mood but it's also known to help improve self-esteem and cognitive function.  You will not find a single healthcare institution that doesn't recommend exercise in any shape of form. All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their…
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Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The…
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It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6092" align="alignnone" width="500"] that's me in the middle[/caption] 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…
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Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer
[gallery type="square" ids="16946,16947,16934,16935,16936,16937,16938,16939,16940,16941,16942,16943,16944,16945"] In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability. I was getting into some…
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Neuroendocrine Cancer: I Can

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Opinion.  Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". When I wrote my blog post "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my post "Neuroendocrine Cancer – is normally slow growing…
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Neuroendocrine Cancer – unexpected detours

Neuroendocrine Cancer – unexpected detours

Awareness, Inspiration
I've mentioned 'luck' a few times in the past month following some more 'cancerversary' milestones - these tend to make me reflect on my experience.  Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by 'chance', or to be more accurate, found following an innocuous set of circumstances.  Click here to hear me talk about my diagnosis. As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose. However, sometimes with a bit of luck or a chance event, it can be intercepted and can then often lead to a much better outlook for the person concerned.  But sometimes there is also a cost and I don't just mean financial (although that is also a very real problem).  Despite me thinking I…
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Patient power – use it!

Inspiration, Patient Advocacy
[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors.  However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication.  The blog then commented on a number of tips for better doctor-patient relationship and communication.  These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…
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Sometimes you just gotta climb that hill!

Sometimes you just gotta climb that hill!

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much colder! However, the 'euphoric high' was worth it.  It was…
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Neuroendocrine Cancer – Incurable but treatable

Neuroendocrine Cancer – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist said " ... perhaps just months".  That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife Chris heard it all and I was refocused.  "OK Doc - let's…
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