NETwork with Ronny © – Newsletter March 2017

 

Hi NETworkers!

Welcome to my fifth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community.

with Grace Goldstein from Carcinoid Cancer Foundation

March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don’t have an issue with private contact but please note my disclaimer. My winter cold extended into March including during the ENETS/INCA symposium and although I had no voice, I still managed a question to the panel.

Despite a low number of blogs, I still managed to accumulate the second biggest monthly blog views ever. Thank you all so much 

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Mar 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  I almost doubled the amount of subscribers in March! Currently 168.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Blog Milestone.  In March, I tipped over the quarter of a million views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

Where did March Blog views come from? – Top 11 countries:  Denmark is a new entry.

 

 

For interest. the 10 Ten Facebook followers by Country – Spain overtakes France 🙂

Thanks for your great support in March.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter February 2017

network-with-ronny

Hi NETworkers!

Welcome to my fourth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don’t have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much 

January’s success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before.  If I grew at January’s rate, it could easily be 6000 but that’s probably wishful thinking!

The month ended with a bang!  The long-awaited FDA approval of ‘XERMELO’ (Telotristat Ethyl) was announced yesterday. Check out my blog which has all the links you need in one area.  Click here to read

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Feb 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like.  Click this link and sign up if you think this is something you’d be interested in receiving.  I reached 100 email subscribers today!
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  That turned out to be profitable as I won $40 of Starbucks e-gifts for being a quick tweeter!  I now have some new friends who are producing a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do!
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017.  I’m very excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March.  I’m being sponsored by the International Neuroendocrine Cancer Alliance (INCA). I’ll be tweeting and posting stuff live from the conference, look out for this.

Blog Milestone.  Accelerated viewing figures should put me into a quarter of a million blog views by the end of this month! Thank you all so much Keep sharing!

Facebook Milestone.  My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Instagram

I’m expanding into Instagram to see how that goes.  Initially I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!   You can follow me here:  Click here to go to my Instagram page

Figures

Where did February Blog views come from? – Top 10 countries:

capture-10-ten-country-feb-17

For interest the 10 Ten Facebook followers by Country:

capture

Thanks for your great support in February.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter January 2017

network-with-ronny

Hi NETworkers!

Welcome to my third ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

January was a month for breaking records.  I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they’re broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer.  Thank you all so much 

January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen’s Germany HQ near Karlsruhe.  I was made very welcome by the Ipsen staff and I think it’s great they want to hear the patient voice.  Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’.  Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s.  See my Facebook post about this visit: https://goo.gl/hyJ0Si

New Blogs Published

A busy month for new blogs. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links:

Other News in Jan 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.  Two new openings in Dec to report:

  • Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer.  See my Facebook post about this visit: https://goo.gl/hyJ0Si
  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like.  You can sign up for this newsletter here as I won’t be posting it every day.  Click this link and sign up if you think this is something you’d be interested in receiving.
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting on this in the coming weeks.

Patients Included.  A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017.  We want to be included right?

Blog Milestone.  My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Figures

Where did January Blog views come from – Top 10 countries:

capture-blog-jan-17

For interest the 10 Ten Facebook followers by City:

capture-cities

Thanks for your great support in January – a great start to 2017.

 

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter December 2016

 

Hi NETworkers!

Welcome to my second ‘community’ newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!).

December was a particularly special month.  For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards.  This paid off and I won the Best in Show ‘Community’ category in addition to being shortlisted as one of 5 finalists in the blog category.  The community award was special because it means we all won the award as a part of this ‘Community’.  I’ve picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I resumed normal activity and then a sprint finish at the end of the month took me over the magic 10,000 blog hits figure (and even more on Facebook).  Stick with me because I really need your help and support and anyone else you know who can assist.  The WEGO awards brought a significant increase in twitter followers.

Blogging

A quiet month in terms of numbers of blogs. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links:

  • My Nov Newsletter!
  • A blog all about Carcinoid Crisis – potentially one of the most important pieces of information you need to know.  Read here.
  • My award announcement!
  • First in a series of ‘spotlight on ……’ posts – this one on Pheochromocytomas and Paragangliomas.  Read here.
  • I shared an inspiration message with you – one that I received from an old friend. Read ‘Keep your light burning’ which had a great response.
  • Confused about the difference between Lanreotide and Octreotide?  This blog will help – it got a really good response and you can read it here.  I also received lots of questions about the individual drugs which was great and shows the importance of this subject to patients out there.

Other News in Dec

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.  Two new openings in Dec to report:

  • The exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories continued into Dec culminating in the award win (you can listen to the announcement live here).  I also featured in a radio show just before the announcement and you can listen to it here (start at 40.30).
  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like.  You can sign up for this newsletter here as I wont be posting it every day.  Click this link and sign up if you think this is something  you’d be interested in receiving.

Blog Milestone.  My blog tipped over 200,000 views in Dec and it’s already accelerating toward a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page was 2 years old in Dec 🙂  Please recommend this page to anyone you think would be interested.

capture
Invite or recommend my page please – let’s grow awareness!

Figures

Where did December Blog views come from – Top 10 countries (Dominican Republic seems to be a new source of interest):

capture

For interest the 10 Ten Facebook followers by Country.

capture1

Thanks for your great support in December.  Looking forward to serving you in 2017!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter November 2016

 

network-with-ronny
Please share me!

 

Hi,

welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!).

What a month November has been – we had NET Cancer Day build up and I’ve been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms.  Due to increased activity, I recorded the second highest monthly viewing figures ever – over 13,000 hits on my blog site in one month (and even more on Facebook).  Not bad for a little backstreet disease – but my intention is to take it to the high street (main street).  Stick with me because I really need your help and support and anyone else you know who can assist.

Blogging

I seem to have produced an above average amount of blogs this month. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links:

Other News in Nov

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.  Two new openings in Nov to report:

  • Cancer Knowledge Network.  An article published in what is said to be North America’s most widely read cancer education resource.  Read it by clicking here.
  • Mentioned by Macmillan Cancer, one of the world’s biggest Cancer support organisations.  See here.  You could increase the impact of this opening by clicking on the black star here to increase my likes number.
  • And ….. there has been masses of exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories:  Blog and Community.

Lutathera (PRRT) Delay. Not the best news from USA where it was announced the approval of Lutathera (PRRT) would be delayed beyond the projected date of 28 Dec 16. A delay of several months seems to be forming on the airwaves but the expanded access program (EAP) will be extended until this issue has been resolved.  CCF has great info on EAP – click here

Living with NETs Website. A new website sponsored by Ipsen (Lanreotide manufacturers) was launched on NET Cancer Day.  This is a special site for me as I was involved with other patients in advising and featuring on the site.  Take a look by clicking here.  Check out my patient video here.

More treatment options for Lung NETs?  Lung NETs lack many of the treatments available for other types of NET but a new trial of Lanreotide could help.  Read here.

Figures

For interest the 10 Ten Facebook followers by Country.

capture

 

Thanks for your great support in November.  Looking forward to serving you in December!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Living with NETs – a patients included award winning site

livingwithnets ronny story

It’s no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named ‘Living with NETs‘.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event.

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more.  And it’s not just learning about NETs, it’s so much more than that.  It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Check out my series of Living with NETs videos available on the site – click here

Doctors might be the experts in your condition

Do you know what?  I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas.  On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not.  There doesn’t seem to be any point in beating them up because they don’t know enough about NETs.  Let’s help educate them instead!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site 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

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

 

WEGO Health Patient Leader Ronny Allan – Living with Neuroendocrine Cancer

This is what taking part in the WEGO Awards means to me

Jack WEGO NETs

Background

In 2016, I was nominated for 6 awards, got to the final for 2 (Blog and Community) and then won the Best in Show Community award.

In 2017, I was nominated for 3 and got to the final in all 3 – unfortunately I did not win any of them due to fierce competition.

Here we are in 2018 and I’ve been nominated for 5 awards and made to the final in the Blog category.  This is not only another great opportunity for me as a blogger and health activist but also a further opportunity for Neuroendocrine Cancer awareness.

blog finalist 2018

The winners of the 2018 awards will be announced over the period 26-28 Sep 2018.

Check out WEGO’s information on the awards here –  click here

Check out my WEGO Health Profile – click here

Listen to my WEGO Finalist podcast in 2016 – click here

I’m very grateful for your help in achieving the above

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

Watch my videos on the Ipsen site Living with NETsclick here

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


 

Make some noise for a silent cancer


can be silent

One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people’s interest.

In the last 36 months, I’ve generated a few ‘different’ awareness campaigns, some of which have been more successful than others and I learn from this.  One of them is actually now the most tweeted post about NETs on twitter.  Fortunately, I have had significant help from YOU because if you did not share my posts and blogs, they would not have the potential reach they currently do and would not, therefore, attract the new audiences I’m looking for (….and finding!). The same applies to Facebook, twitter and other parts of the social media universe.  I thank you all for the help to date.  However, the job is far from finished!

My main campaigns are listed here so please help yourself to the ones you like and feel free to support or sponsor.  Please note there are social media sharing buttons at the bottom of each post – or just simple cut and paste as required.

 

ignore-this-post

Neuroendocrine Cancer would love you to ignore this post.   This is a reverse psychology message which is designed to attract attention – and it does!.  It is currently the most tweeted post in the history of NET Cancer awareness.   If you are on twitter, please retweet the original post (quoting it in a new post is also great but please also retweet the original).  The tweet can be found by clicking here.  It’s also a great awareness post for any type of social media so please share as it gives a really simple and yet compelling awareness message about the danger of NET Cancer and ignoring symptoms, including after diagnosis.  Click here then share.

 

it-takes-guts-living-with4.jpg

Living with Neuroendocrine Cancer – it takes guts! This is a powerful message which lets people know what effects the consequences of Neuroendocrine Cancer and its treatment have on people’s lives. It’s not a pity party – I don’t do those (as you well know).

I also emphasise that it’s not all about diagnostic difficulties (as important as that might be), more focus needs to be placed on LIVING with NETs given that it is a highly prevalent cancer, and no longer rare.

The diagnostic angle was relevant 10 years ago but the focus needs to become much wider thus why the community needs to shift from the ‘same old same old’ to a ‘different new’. This post has attracted much interest from new audiences in the wider healthcare world. Read and share it by clicking here


sshh - can you hear it?

Neuroendocrine Cancer – ssh! Can you hear it?  This is the NETs is ‘silent’ theme and attracts a lot of support.  This really drives home the devious nature of NETs, the fact that it can be a very silent cancer until it’s too late and the difficulties that it presents with accurate diagnoses and subsequent ongoing monitoring.  The post can be found by clicking here

 

The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer This is a campaign to point out that NET Cancer is not confined to a particular part of the body and raises the issue of misdiagnosis, incorrect naming and recording of cancer types; and the loss of awareness opportunities, particularly when famous people are involved.  I never get fed up of sharing this one and it cannot be shared too many times!  Please feel free to share the hell out of this one.  The post can be found by clicking here

 

Early signs of a late diagnosis (2)

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis

This is an awareness message to emphasize that there are a number of different syndromes involved in NETs in different parts of the body and that terminology and understanding is important to get the awareness messages right.  Click here.

 

 

Every day is NET Cancer DayEvery day is NET Cancer Day.  This post has had the largest number of 5 star ratings input by readers indicating support for my awareness strategy.   Don’t get me wrong, 10 Nov is special but the other 364 days also present awareness opportunities. You can read this blog by clicking hereYou can also register for my NET Cancer Day Social Media Event leading up to 10 Nov by clicking here and select ‘Going’ (then invite others please). On this event, Every Day is NET Cancer Day!

 

lets raise our sites

Let’s raise our ‘sites’. This awareness message also emphasizes the anatomy of NETs and the importance of the correct terminology in order to get the optimum and accurate awareness messages over.  I’m using the word ‘sites’ as a take on ‘sights’ – someone picked me up for spelling last time I posted!  Click here to read.

 

Neuroendocrine Cancer:  Normally Slow but Always Sneaky.   Very powerful message, scary but designed for external audiences.  My most read article with over 20,000 views in a year.

cancer-rates

 

Neuroendocrine Cancer is NOT a ‘type’ of another cancer …. PERIOD.  The anatomy of cancer works against us so we need to really drive this message home.  We lose a lot of publicity, resources, supporters and potential funding because of this misunderstanding.

A Neuroendocrine Tumour is NOT

 

The 9 posts above comprise around 20% of my total blog hits and these are the ones which are attracting new audiences who now know about Neuroendocrine Cancer and are telling others.  Please help me build on this.

Neuroendocrine Cancer can be silent but we shouldn’t be!

 

Stay well all

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!

If on twitter, please retweet this tweet   

 

Neuroendocrine Cancer Surgery – a patient experience (part 1)

Neil
Chris and I with our friend and hero Mr Neil Pearce – my surgeon.

First Surgery – 8th – 26th November 2010

Memories of my 18 day stay in hospital from 8 – 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NET Cancer is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients.

Prior to being diagnosed with Cancer, my experience with hospitals was very limited and I had always been a tad squeamish when it came to routine injections. So having major surgery with a projected 10-14 day stay in hospital was a massive challenge. However, I remember being fairly relaxed leading up to this event.  I suspect I had accepted my situation; and that a combination of pragmatism and trust in my surgical team had conquered any fear.

The surgery, which lasted 9 hours, was really in two parts, firstly to get rid of my primary in the small intestine plus any accessible locoregional stuff.  Basically the surgeon removed 3 feet of my small intestine, carried out a right hemicolectomy, and also removed ‘oodles’ of lymph nodes in the mesenteric region, with careful blood vessel reconstruction required. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels.  This is an issue which has returned in 2018 and you can find an update by clicking here.

Spookily, I woke up from the anaesthesia just after midnight on 10th November, I woke up on NET Cancer Day.

I’ve not spoken too much about the first week in the hospital after surgery – mainly because some of the details remain scant. However, there are four stories I remember in some detail and they even make me smile, although I wasn’t laughing at the time!

Physio (a synonym for pain!)

One of the key things I remember was the extraordinary amount of tubes and other things connected to my body. Had I drawn a picture, it would have looked like the map of the London Underground. Some of them were taking things out of my body (temporary ‘toilet’, wound drains, etc) and others were for putting things in (drugs, pain killers, nutrition, etc). My legs had ‘circulating leg wraps’ to prevent the formation of blood clots. They were very uncomfortable and sweaty but important.  I appeared to be pinned very tightly to the hospital bed – any thoughts of escape were quickly subdued by the sheer weight of equipment.  It was, therefore, a total surprise to me how soon the Physiotherapists arrived to administer torture 🙂  The difficulty of arranging all the tubes in order that I could just even sit up led me to believe it would not be possible.  However, they persevered and I had of course forgotten, this is what they do for a living! Putting the tube issue to one side, the very act of sitting up and putting your feet on the floor with a 12″ north to south abdominal wound still repairing is one of the most difficult and painful things I’ve ever done (even after activating my Pain Controlled Analgesia (PCA) – more drugs!). However, and I say this in hindsight, this is a very important part of the healing process and patients need to be compliant!  I eventually got used to it and starting off with a walk around my bed, a walk to the nurse desk, a walk up and down the ward….. this eventually led to a walk around the hospital once some of the tubes were removed.  However, I was feeling so bad one day, I refused physio which resulted in a lecture from my surgeon (see photo above) later that night – the discussion ended with the words “You are a winner”. It helped as I sprinted up and down the ward corridor next day!  Isn’t it amazing how a kick in the ‘ass’ can also function as medicine?

Pain Control

The Pain Controlled Analgesia (PCA) button was never far from my hand.  After surgery, it isn’t completely painless, but the PCA does help.  It normally contains morphine which helps kill the pain but comes with other side effects including sleepiness (handy), foggy brain, inability to focus, strange dreams and on occasion mild hallucinations (I swear the people on the wall picture opposite my bed were moving!).  After a few days, this was replaced by drip fed paracetamol (I think).

Re-establishing the food trail

I hadn’t given this too much thought prior to the surgery but when they remove sections of your intestines (in my case the terminal ileum and the ascending colon), there has to be a new join (anastomosis) and this needs time to heal. This means a gradual and gentle return to normal eating.  One of the most annoying tubes was the nasogastric tube (NG tube).  I woke up with this tube already inserted but around day 3 it was removed whilst I was awake (a little bit scary).  However, I was sick a few times (quite scary), so it was re-inserted (a little more scarier than removal).  However, once it came out for the second time (still a little bit scary), they gave me a rather tasteless drink called ‘Fortisip’ which apparently had the proteins and nutrients I needed whilst I waited to move onto normal food. My first proper food after a few days was ‘heaven’ – chicken soup followed by ice cream and jelly (for North Americans, please note jelly is not jam!)

Re-establishing the ‘poop’ trail

Technically, this is just an extension of the ‘food trail’ info above.  However, a story that I have hardly ever recounted follows.  I think this was around day 15/16 Nov or thereabouts.  My surgeon kept quizzing me on ‘gut feelings’ i.e. burping, hiccups, wind etc.  I hadn’t realised he was working out when to offer some help re-establishing this element of my recovery.  I think I was late so some milk of magnesia was given one morning. That evening, nothing happened and so the night shift nurses were primed to offer me a ‘special’ suppository which I was assured would be a great help in moving things in the right direction.  I declined their very kind offer to carry out the ‘insertion’ instead opting for some dignity retention – there wasn’t much left at this point but I was determined to hang onto it!  As I was laying there, I quickly scanned the remaining tubes (by this stage, I was down to 5 or 6), I reached round and it very quickly dawned on me that this was ‘mission impossible’.  I rang the bell as a signal that sometimes practicality overrules dignity.  Like the physio thing above, I had forgotten that Nurses do this all the time.  Ten minutes later, the bell again summoned the nurses who helped me and my tubes to the toilet. The toilet/bathroom was to become a familiar place over the coming weeks.

Following the surgery and when I was mobile, I weighed myself and found had lost a complete stone (14 lbs).  Weight loss led up to my diagnosis and continues to be an issue today – read more here.

Part two covers the second period of my 18 day stay and can be read by CLICKING HERE

Almost 8 years later, please check out my new challenge – click here.

wego-blog-2018-winner

patients included

 

 

Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century

same-ol

OPINION

The build up to NET Cancer Day has begun and I can hear hoofbeats becoming louder every day.  Is it a horse, is it a zebra etc etc.  However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more likely be taken seriously and attract new audiences?

For those unaware, the term ‘Zebra’ is a North American medical slang for arriving at an ‘exotic’ medical diagnosis when a more commonplace explanation is more likely.  The original context of the term was to correctly indicate that the most obvious diagnosis of symptoms is normally correct – i.e. hoofbeats is almost always the sound of a horse.

“When you hear hoofbeats, think zebra” is clearly not practical and pretty dangerous to those who have the obvious diagnoses (i.e. the vast majority). It’s also likely to turn out to be a very expensive way to do business as common things are common (in fact Neuroendocrine Cancer is now much more common that it was 20 years ago…..).

I’m not suggesting those who are destined to be diagnosed with ‘exotic’ diseases should be ignored for the ‘greater good’, I’m saying that hoofbeats are in actual fact normally the sound of horses in both equine and medical terms – thus why the saying was invented in the first place.  By the way, Neuroendocrine Cancer has the fastest rising incidence of all cancers on the planet so it’s far from exotic. What I’m also saying is that perhaps we should stop ‘beating up’ and potentially insulting medical staff using a maladjusted version of the hoofbeat analogy in our PR.  I’m afraid the use of cartoon zebras looking sanctimoniously down on cartoon doctors is perhaps not the way to win friends and influence the people we need to work with in helping diagnose quicker.

Moreover, we really need to stop dehumanising patients. I think most NET advocate organisations tend to agree with this view as they mostly do not have zebra icons in their own branding i.e. they get it, even though they might not admit it for fear of upsetting the zebra HQ.  By the way, if you hear the sound of hoofbeats in Kenya, it’s likely to be a zebra, so should the Kenyan NET organisation ask their doctors to look for horses?  Slightly flippant but necessary to make the point that our disease is international and yet certain organisations appear to be aloof by using it as an international slogan when it is just not relevant internationally.

The use of this skewed version of the phrase might be a great ‘rallying cry’ within the NET Cancer community and for some a ‘populist’ Facebook ‘like farming’ scheme but sharing quite ridiculous pictures of animals that will only be shared by patients is NOT real awareness. In fact, and in my opinion, the ancient, outdated and misleading zebra term is fundamentally flawed in a number of ways.

1.  Context.  Contextually, the zebra represents a term for a diagnosis (i.e. a disease) but the patients are not their diagnosis, they are not their disease – they are humans.

So when someone says “I am a zebra”, they are in effect saying “I am a disease”.  If they say “Dear Zebras”, they are saying “Dear Diseases”.  Or the cringeworthy “My fellow diseases”

2.  Scope. The term is heavily associated with diagnostics i.e. it has a very narrow scope. It does not sit nicely with the increasingly important long-term maintenance of patients – crucial when you consider this is mostly a slow-growing and therefore highly prevalent disease.

3.  Confusion. The term ‘Zebra’ is not exclusively used by the Neuroendocrine Cancer community, it can be, and is used by, other conditions which quite often leads to confusion.

4.  Relevance. The term is inextricably linked to rare diseases and as we all now know, NETs are no longer rare. Anyone who says that the group of diseases called Neuroendocrine Tumors (or Neuroendocrine Neoplasms to use the correct scientific term) is rare, is clearly out of touch with the latest incidence and prevalence data (….or chooses to ignore for their own agenda).

I’ve made no secret of the fact that I believe we need a paradigm shift in the way we (the Neuroendocrine Cancer community) spread external awareness of this less common type of cancer. I think everyone agrees we need a lot more public awareness of Neuroendocrine Cancer and also that we need some high-profile ‘ambassadors’ (preferably themselves patients) in order to help promote our cause.  Yes, money is useful too but in a ‘chicken and egg’ sense, we need a compelling case to attract the funds.  We need new audiences outside the ‘bubble’ I think we appear to be trapped inside.  The zebra posse sharing zebra pictures between each other is not efficient awareness.  

Here’s my beef.  If you speak to any primary or secondary care doctor, you’ll find they are very well aware of the conundrum when faced with a patient who presents with vague and odd symptoms and negative tests. Almost all will say they don’t need reminding that it might be an oddity, and that it is difficult to diagnose.  They will definitely accept that some conditions are more difficult to diagnose than others and if you think about the fact that there are over 200 different types of cancer and literally thousands of conditions out there, you can see they have a really difficult job.

Let’s be realistic, very few people are going to be diagnosed with Neuroendocrine Cancer at their very first visit to a doctor.  The same could be said for many cancers and many other illnesses.  Many conditions are difficult to diagnose and many are misdiagnosed for other things – yes this happens with NETs too.  NETs are not as special in these areas as some people make out. Whilst we’re on that subject, please don’t quote patient surveys to me, they are also fundamentally flawed both in terms of numbers of participants and the source of the participants. It amazes me that the NET community uses this flawed (and outdated) information annually including alongside animal antics which degrades what limited value they already have.

I also know that many people (including medical staff and patients) are both confused and incredulous at the NET communities failure to ditch this out of date and single issue awareness message.  Some avoid the use of these animal gimmicks and then lapse their real beliefs on 10 Nov just to appear to fit in.  However, that’s rather transparent and so people see right through it, like me they want these progressive organisations to stick to their principles. They tell me they don’t like the zebra model but then say a different thing to Zebra HQ.

To quote one famous NET Specialist “….zebras …. we’re beyond that now”

We need our awareness to cover the whole spectrum of being diagnosed and then living with Neuroendocrine Cancer.  We share so many issues with many cancer patients in the challenges of living with a long-term condition. This is not special, not unique, and it certainly isn’t a rare occurrence. Key facts continually missed and continually ignored by the ‘zebra posse’ (perhaps intentionally), is that this disease of ours is no longer rare and  diagnosis is improving, both of which are now well documented.  The ‘zebra posse’ will ensure that quite ridiculous pictures of zebras, zebra patterned clothing and jewelry all take precedence over genuine patient concerns on Facebook forums, i.e. it is hindering proper support for NET patients – NET patients are suffering because of this infatuation.

As one well known NET patient said, “unfortunately the community has become too cute with the icon”.

He’s right, it is really holding us back. It’s a PR disaster.

I’m sure that earlier access to diagnostic testing (scanning in particular) will lead to earlier diagnosis, in fact access to better scans is cited in the lasts SEER NET report as a factor resulting in increased incidence rates. That’s a resource/process issue rather than just a training/knowledge one. We need to work with doctors, not shoot them down for not knowing every minute fact about medicine. NET Cancer is much more likely to be diagnosed at secondary care and we should be equally or even more focused at that level.

If your Doctors don’t suspect something, they won’t detect anything is a more practical and realistic phrase than the impossible and impractical one in current use by our community. Additionally, to suggest that NET Cancer always presents with years of vague symptoms and requires several visits to a physician before a proper diagnosis is simply not true and is a myth.  To suggest that an international patient survey of 5000 accurately represents the experience of hundreds of thousands of NET patients out there is way off beam, particularly when the source of the survey patient cohort is taken from those affected most, those with the biggest issues.  Big Facebook forums do not represent the average experience of a NET patient.

Finally, I think the patient has a big part to play in diagnosis.  Thanks to the internet and the stellar rise of social media, many patients are now much more savvy and are presenting to doctors and specialists with lists of their symptoms and a diary.  Some will even have already compiled a list of questions to ask and have their own suggestions about what might be wrong with them.  I see undiagnosed patients every day on my social media very clued up, thanks the rise of the online world, and I guarantee you they are (indirectly) educating their first line medical staff when they reel off NET facts.  Add in better diagnostic testing and greater access to it (including via primary care), then I think there are positive times ahead for the earlier diagnosis of Neuroendocrine Cancer.  You might say it’s a bit of a dark horse.

To summarise ….. The first word of this post is “Opinion” but it is a pretty strong opinion as you would have gathered from the flow of the text. Everyone does indeed have a story and you only tend to hear the bad stories on NET patient forums. Additionally, newspapers love a bad story – they never print “cancer patient quickly diagnosed and treated for cancer – the end”. It’s a bit like in NET world, where the worst cases will be the majority constituents of any forum, because they are looking for help and support. The biggest US forum has around 4000 people but there are over 200,000 people living with NETs in USA (i.e. not rare). There’s a similar quota in UK. I really believe the bad experiences you regularly see on NET forums are the extreme cases (the minority). Unfortunately, most NET patient surveys are taken from these patients so the statistics are totally skewed, presenting a false picture of reality. That’s not to say we ignore this section of the community but we owe them a much better campaigning tool than the now outdated, unfashionable and very inward looking animal analogy.

Let’s move into the 21st century and get on with that.

Thanks for reading

Ronny

Hey Guys, 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

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

wego-blog-2018-winner.png

Every Day is NET Cancer Day!

Every day is NET Cancer Day

Opinion.  In 2014, I experienced 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 major 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 of NET Cancer patients, specialists, supporters and advocates.

If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness.  For me, one day doesn’t cut it.  Some cancers have a whole month but they tend to be the big most common ones.

I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time (including NET Cancer Day and all its affiliate organisations).  There’s a lot of time and effort required.  It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed.  Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again.  I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.

Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other.   I want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th.  This is what the NET Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a NET patient organisation, I know they work very hard.  This is about the out of date and incoherent strategy.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament
Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD (now Sir Desmond Swayne) MP in the UK Parliament

Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective  Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle.  In regards interactions with politicians, as another example I’m always happy to see the annual state declarations of support in USA.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I  believe that is part of their success.  

When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy. By the way, name another successful cancer strategy using an animal as their ‘cover page’.  Spoiler alert, there isn’t one. 

Because NETs is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent, effective and up to date. Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Human Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients.  It also needs to be accurate.

New audiences means new thinking ….. different thinking.  One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians.  Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards.  It’s worth it.  Here’s a statement from the CEO of WEGO Health:

Jack WEGO NETs

My animal free blog site will hit one million views next year and I’m a relative newbie.  So perhaps there is another way?

When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer. Although 10 Nov is approaching once again, for me……..

EVERY SINGLE DAY OF THE YEAR IS NET CANCER DAY

RonnyAllan strap

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!