RonnyAllan.NET – Community Newsletter January 2018

A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) – i.e. PRRT

I caught this news in my social media NET

  1. FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I’m very pleased for my USA friends but we mustn’t forget it’s also required in so many other places.  Help me populate locations in my live article on  PRRT click here.
  2. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence.
  3. MIDATECH Pharma announced intention to carry out human trials of Q-Octreotide – check out my article covering this potential new drug.  Click here

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Jan 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

  I now take food with my medicine!  A light-hearted discussion about taking pills/capsules as a NET patient
  Shame on you! An invisible illness article based on a true story.  Some people can be cruel.
  PERT (Creon etc).  Who needs it and why.
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)  The future of PRRT type treatment?
  My December 2017 Newsletter in case you missed it.

January 2018 was a record breaking month since blog inception.  Here are the top 10 most read articles which contributed to Jan’s figures:

Shame on you! More stats 2,064
Neuroendocrine Cancer – no treats, just tricks More stats 1,488
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,226
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT) More stats 1,101
Living with Neuroendocrine Cancer – Home Page More stats 1,053
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) –
the Digested Version (Nutrition Series Article 5)
More stats 899
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 855
“You must be doing OK, you’ve not had chemotherapy” More stats 819
Background to my Diagnosis and Treatment More stats 594
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 36

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so).
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat will be about PERT (Creon etc) – date to be confirmed by probably around end of Feb).  Join by clicking here (please answer the 3 simple questions)

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 doing this although it may not always be apparent.  For example. my story is featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.

  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Jan, I tweeted 187 times on my personal account which led to over 145,000 views.  I was mentioned 101 times by other tweeters, 3003 people looked at my profile and I gained 67 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  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. This has been a huge success from my point of view and I’ve had a growth spurt in January. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.

  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Speaking Engagements

I’ve been invited to speak to a local (ish) NET patient support group, just tying up the details (watch this space).

Social Media and Stats

Blog Milestone.  At the end of January, I accelerated past 470,000 blog views! Thank you all so much Keep sharing!  On track for half a million by end of February.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement!  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. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 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!  I really enjoy these pictures, I hope you do too. You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

An amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in January.  Onwards and upwards!

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!

NETwork with Ronny © – Community Newsletter DECEMBER 2017

6

HAPPY NEW YEAR and welcome to Ronny Allan’s Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that’s a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month.

At the end of 2017, I’ve been reflecting on the amazing support from you guys.  I’m a bit ‘discombobulated’ but also proud to see that I’ve had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible to carry that momentum on in 2018 but I’ll give it a go!  Check out my top 6 posts of 2017 by clicking here.

AND ….. I’m now officially ronnyallan.NET (how apt is that!)

ALSO …. I’m offering Google translate on each blog page and post to better service my international followers.

language

I caught this news in my social media NET

  1. NET Incidence UK. New figures from Public Health England confirms the incidence of NETs continues to rise supporting my 2 year old article indicating it was not rare, just less common.  The data was published quietly by NET Patient Foundation in their December 2017 newsletter. Check out the new data by clicking here.
  2. PRRT. Anticipation is rising awaiting the US FDA approval and a NICE statement on expansion in England.  In Scotland, I have anecdotal evidence that PRRT is being set up as a routine service in Glasgow Beaston (will update you when I have something concrete).  Read the updated post here.
  3. Pheochromocyoma/Paraganglioma.  Check out news of a new drug in the pipeline – Azedra (not approved yet) – click here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Dec 2017 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

  NETs – A Surveillance Society – make sure you are getting the right checks
  Updated version of Somatostatin Analogues Pipeline (including news of delivery systems – smaller needles, nasal spray, capsules)
  Great video update from Dr Jonathan Strosberg

graphic courtesy of ITM AG
Expanding PRRT update
  My November Newsletter in case you missed it.

Other Activity

December was quiet but I’m out there looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so)
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • In December, the total number of people from USA on my main Facebook page exceeded 3000 – check out the announcement here.

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 doing this although it may not always be apparent.

  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Dec, I tweeted 140 times on my personal account which led to over 100,000 views.  I was mentioned 90 times by other tweeters, 2526 people looked at my profile and I gained 40 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  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. This has been a huge success from my point of view. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.  I’ve been pushing this newsletter quite a bit in Dec which has upped my subscriber base to 415 – a 10% increase on last month.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow when I have the official photos. Still waiting on feedback from the sponsor.

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone.  In December, I accelerated past 445,000 views! Thank you all so much Keep sharing!  On track for half a million by end of February 2018.

Facebook Milestone.  I would love to have achieved 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement!  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. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 240 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

Community Statistics (the measurement of my efforts on your behalf)

Figures

An amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in December.  Onwards and upwards!

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!

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Welcome to Ronny Allan’s Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks“. If you’ve not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥

That said, I was actually pretty quiet on NET Cancer Day. You have to remember that my contribution is mostly social media, that is my strong point and that is where I focus. It’s a great platform in the ‘awareness battlespace’ for many medical conditions. Moreover, it is where we will find new audiences. More and more doctors of all specialities are joining social media on a daily basis – we need them to find out about NETs.

I was quiet for much of November due to a wee bit of exhaustion, coupled with a slight depression that another year of ‘same old’ messages was taking place. Despite this, I still managed to dominate the social media #LetsTalkAboutNETs campaign.

AND ….. I’m now officially ronnyallan.NET (how apt is that!)

If English is not your first language, please check out my language gadget on each page and post of my blog site:

language

I caught this news in my social media NET

(did you see what I did there?)

  1. Pheochromocytoma is something I’ve written about before but this video from NET Cancer Day (courtesy of the PheoPara Alliance) is a classic example of how I believe we should do awareness – it’s about real things happening to real people rather than gimmicky BAWSA stuff.  If you have not seen this short video, check it out here.
  2. New Treatments on the horizon – short video from Dr Matthew Kulke with my additional comment – check it our here
  3. RIP Sunny Susan Anderson, patient legend – check out this link

Blog Site Activity  

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, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 Hormones – The NET Effect Horrible Hormones – totally revamped post and now a reference article on my site. https://www.facebook.com/NETCancerBlog/posts/968176113320680
 7 year itch The 7 Year Itch.  Living with NETs! https://ronnyallan.com/2017/11/20/the-7-year-itch/
 the-p-word The P Word has a bit of a renaissance period in Nov with many people showing a renewed interest in the subject of palliative care https://ronnyallan.com/2016/11/18/palliative-care-it-might-just-save-your-life/
 Newsletter Oct 17 October Newsletter  – in case you missed it https://ronnyallan.com/2017/11/01/network-with-ronny-community-newsletter-october-2017/
 poker face Poker Face or Cancer Card – my second article in Cure Magazine https://www.curetoday.com/community/ronny-allan/2017/10/poker-face-or-cancer-card

Other Activity

November didn’t seem like a busier month in terms of blogging despite several personal challenges and external projects on the go.  Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I still managed to break records in November, mainly due follow on support for my Halloween themed post on 31st Oct.  Thank you all so much for the support.

Please join my 2018 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer

Please also note I cannot accept telephone or video calls on a one to one basis (please just message me and I will respond).  Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in November 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 doing this!

  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Nov, I tweeted 250 times on my personal account which led to 152,000 views.  I was mentioned 160 times by other tweeters, 3322 people looked at my profile and I gained 48 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.Nov tweets
  • Daily Newsletter from my twitter feed (Nuzzel).  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 – you don’t need to have a twitter account to read, just sign up with an email.  Currently 387 subscribers – up 13 on last month.

nuzzel

 

  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

 

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.   This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  They published an article recognising NET Cancer Day (might be the first time they ever did) – check it out here:

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow when I have the official photos.

Writing and other types of Engagement (external)

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone.  In November, I accelerated past 430,000 views! Thank you all so much Keep sharing!  On track for half a million by end of February 2018.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement!  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.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 230 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

Community Statistics (the measurement of my efforts on your behalf)

Figures

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in November.  Onwards and upwards!

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!

 

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

wego-community-win

community_titled_transparent_2013-10-22

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 activities.

Many thanks for everything you’ve done!

Ronny

Thanks for listening

Ronny

Hey Guys, I’m also active on Facebook which comprises the bulk of my award-winning community.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

 

 

Let’s talk about living with NETs

being_there_front
Graphic courtesy of Ellie McDowell

There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine Cancer?. 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 vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post!

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living

Thanks for reading

Ronny – diagnosed 2010 and still a newbie

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

It’s scary searching Cancer online

IMG_20160427_192004.jpg-1060x1060
that’s me in the middle

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 know it was totally out of date!  I’m still here! 

Fast forward 6 years and I now confidently prowl the internet, I know where to look, I know what to ignore, I know what is current and what is out of date.  I understand the disease and am able to put most things into context. Even today with much more positive stuff out there about new treatments and much better prognostic forecasts, I suspect for newly diagnosed patients, it will still be scary.

When I established my blog and then my ‘front end’ supporting Facebook site, I decided to put this experience to good use to help others (including myself!). I like to help people navigate the muddy waters of Neuroendocrine Cancer.  This can bring with it some tough questions so I’m always careful to manage expectations.  Fortunately, I have a number of ‘go to’ sites, people and organisations that I use once I’ve established someone’s requirements.

I’m often reluctant to recommend particular patient forums to anyone as I think many of them can fall into the scary category, particularly those without any form of monitoring or ‘community champions’ who are experienced or trained to handle the issues that can occur online.

Around a year ago, I decided to join the Macmillan Online Community Information site, and was pleased to see it had a blogging app. I found it to be an excellent site and it has a ‘one stop shop’ of supporting tools and information.  It’s very easy to navigate and use.  You can read the content but you need a logon to blog or comment on any discussion (pretty standard).  Their information on many of the issues faced by cancer patients is second to none (Finance, Work, Emotions and many others). I know some NET patients are wary of technical information about NETs online but of all the sites that are designed for supporting multiple cancers, Macmillan is one of the best ones for general NET information. There is also a discussion app (a forum) which I try to monitor and help those who find this site and are struggling to find answers to certain questions. There isn’t really a strong presence in the Neuroendocrine Cancer section but it is a less common cancer. They have a number of ‘Community Champions’ on their forums who are absolutely fantastic and they make you feel comfortable. Moreover, they make you feel like you are not fighting cancer alone.

I’m also a heavy supporter of Macmillan on twitter as some of their campaigns directly benefit Neuroendocrine Cancer. More and more people are now living with Cancer and there has to be more focus on maintenance and support, in particular for the consequences of cancer. Macmillan is at the forefront of these campaigns and they are an organisation that can make a difference.  I have listed some Macmillan twitter accounts to follow below.  If you’re a tweeter, your help with their campaigning would be appreciated. UK patients can also sign up as an e-campaigner – this is an easy task involving half a dozen 10-minute online activities per year – so you too can help make a difference by adding your voice.

In terms of Neuroendocrine Cancer awareness, the Macmillan blog site is now my 6th biggest referral point to my Living with Neuroendocrine Cancer blog and they have also featured several of my posts and used some as guest blogs.  I was therefore both delighted and honoured to have been chosen to feature in their ‘Community Information’ campaign poster which you can see as the header picture in this blog. During the photo shoot, I also got to meet the fantastic staff from Macmillan Cancer Information and Brand Awareness departments.

Finally, please note that Macmillan have advertising space booked and you may see my face as you’re driving through the UK streets or stood at a bus stop. Now that is scary!

Thanks for listening

Ronny Allan – Macmillan Cancer Voice

for those on twitter, please consider following and supporting these twitter accounts:

Macmillan Consequences of Cancer

Macmillan Recovery Package

Macmillan Cancer Information

Macmillan Campaigns

Macmillan Cancer (main account)

 

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

 

For those on twitter – please consider retweeting the post below:

https://twitter.com/MacConsequences/status/736905556582141952?s=09

Don’t worry, I really am OK!

dont-worry-im-ok
I really am OK!

I read an interesting article in the BBC entitled “Why people keep quiet about their battle with cancer”.  The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here:

  1. Talking about Cancer

  2. Managing your illness

Firstly as I have an international audience, I thought I’d introduce what might not be a well-known British trait – the ‘stiff upper lip’.  For the uninitiated, I’m defining this as “One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence.”  That perfectly explains the accompanying graphic!  That definition also covers the two key themes above, talking about it and managing the illness.

There appears to be a lessening of this way of thinking in the past 30 or so years. However, I think this trait remains prevalent, particularly (but not exclusively) in the more senior citizens. I’m not convinced that a stiff upper lip is something confined to the UK as I learn how some of my overseas friends cope. I also think it might be more prevalent in men, you just need to look at the gender split on cancer forums to see that.

As someone with a cancer blog which has fielded a quarter of a million views, I can hardly be accused of keeping quiet about my cancer (edit: now nearly a million).  However, that is a relatively new thing since diagnosis in 2010. Following that diagnosis, I kept my cancer ‘secret’ to close family, a few selected friends and only those at work who actually needed to know for administrative purposes. As I said in my blog “Sorry I’m out of service”,  …..the image of ‘invincibility’ was important to me at that time and I thought I could deal with it and still have the same ‘look and feel’ in my life as I had before. Someone suggested that I should go home one day and my response was “the only way I’m leaving this building early is in an ambulance. Foolish? Absolutely (but in hindsight of course!).  It eventually became impossible to find the same ‘look and feel’ and it took me 3 years to come out of my cancer closet.

I suppose people have such varying personal circumstances and different characters will deal with managing their illness in different ways. Some rely totally on their medical team (I get this but I wouldn’t rely 100% on this strategy).  Some rely on support groups. For example, take patient forums where there is a broad range of patient engagement types. Some people talk a lot about their issues, every cough, sneeze and ache is a worry. I suspect they are simply looking for support or they might be frightened and worried about a particular problem. Perhaps some are more reserved or they already have enough support elsewhere. Maybe they simply get some support by reading about the experiences of others with the knowledge they have that safety net if they felt they ever needed to ask a question. Of course, when you compare the ‘guesstimate’ of NET patients vs online patient forum numbers, the vast majority of NET patients are not on a forum. Interestingly, I have many people following my blog on Facebook, twitter and WordPress, who are not on any forum – in some ways, this might be a good option for some.  That said, I’d like to think my own group offers a good service.

I find myself managing my illness on a day to day basis.  I like to assess any issues carefully to avoid wasting other people’s time and generating unnecessary alarm and drama. But do I have a stiff upper lip?  Yes – I think I’ve always been like that and the ‘going home in an ambulance’ statement above confirms that.  However, I suspect I’m now more of a realist i.e. I’m aware of the signs, aware of the risks and I know there’s a possibility of me becoming ill in a short space of time. I need to avoid that. Sometimes I have a ‘battle’ with my ‘stiff upper lip’ but it’s normally a question of judgement and risk assessment.  Key questions I ask myself are: ‘Is what I’m experiencing normal’ and if so ‘it is dangerous’. If it’s not normal, ‘is it connected to NETs’ or ‘is it a regular illness’.  I’m also lucky to have a managed NET surveillance regime thanks to my local NET MDT and Centre of Excellence.

I remain alert but I won’t normally ‘suffer in silence’ for too long.  Please don’t either.

 

Tweeters – please retweet this tweet!

 

 

 

Neuroendocrine Cancer Forums: frighteningly good or good at frightening?


Young-woman-with-computer-worried

OPINION

When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn’t really a major player, more of a ‘lurker’. I found it quite ‘cliquey’ and I should have listened to the initial advice of that fellow patient!  So I left it.

Joining Forums

In 2013, I joined several large Facebook closed groups which function as forums. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity.

Be prepared!

I really was not prepared for what I found in these groups. It seemed many people were in a much worse condition than me (I now know this to be incorrect) and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, the content of these forums was stressing me out!

Remember, forums don’t represent the whole NET Patient population

It suddenly became obvious to me that the actual ratios found on forum sites do not equate on the outside, i.e. even on the bigger forums of 2000+ this is not a good representation of the NET patient community when you consider there must be well over 500,000 patients worldwide. For example, on forums, it often appears that everyone has some form of ‘syndrome‘ when in actual fact the ratios are much much lower. If you agree with the logic above, this forum ratio of patients is a particularly relevant point for new forum members who, upon joining, will suddenly find that every symptom in existence seems to be continuously (and repeatedly) associated with the disease, causing further distress.  If you think about it, on a forum, more people are likely to say “yes I have that problem” than “no I don’t have that problem” in response to any question. Regardless of how bizarre or outlandish the question is, someone will nearly always respond saying they also have that issue ……. cue epidemic.  This can unfortunately make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings.

Diagnosing the Undiagnosed

There are also many ‘undiagnosed‘ people on forums searching for clues for their long-standing illnesses. This isn’t surprising as Neuroendocrine Cancers are notoriously misdiagnosed as routine ailments, in some cases for years. I guess the ‘power of the internet’ leads these people to forums.  These cases tend to come and go and you can almost sense the frustration of those who believe they have NETs but are not yet medically diagnosed with any illness. I really feel for someone with any illness that cannot be pinned down. I feel helpless that I’m unable to wave a magic wand. However, I can’t help feeling that some might be convincing themselves they have Neuroendocrine Cancer by what they read, or perhaps have even been nudged (further) into this belief by their well-meaning audiences who, like me, are simply trying to help?  Only my opinion.

Be prepared for different opinions

If you want a very wide-ranging set of opinions on very basic NET information – join a forum.  Nothing is a myth, everything is possible, even the seemingly impossible. Much of this misinformation starts on forums, tne spreads to other forums and the anecdotal takes over from fact. As difficult as it may seem, moderators and experienced/knowledgeable members need to correct blatantly incorrect statements to maintain group integrity and educational aims (where applicable).

Be prepared for fake healthcare news, celebrity fad diets, miracles cures

Social media including patient forums is a targeted medium for those who wish to spread fake, unscientifically proven, believable and solicited news and articles, in many cases to sell a product, i.e. a book, a video, a celebrity diet or product.  Some of this information may result in harm to some patients. Very often, administrators of forums lack the knowledge and initiative to prevent these posts making it to their communities. In many cases, this (mis)information will be shared by another patient or family member who may just be well-meaning but has fallen for the trap set by the purveyor of this clap-trap. This can lead to great upset or fear for those already in a delicate state. Check out my 3 articles on the subject:

Part 1 – Fake News
Part 2 – Alternative Therapy – what’s the harm
Part 3 – Miracle Cures

Be prepared for toilet conversations

A much discussed topic and sometimes not for the very squeamish.  I’ve seen some unusual pictures on forums but the worst by far was one of someone’s faeces.  I struggled to understand why anyone would post that – moreover, I was amazed the site administrators allowed it.  No thank you!

Be prepared for religious conversations

There is a lot of spiritual and religious content on certain forum sites. I’m not a religious person but I totally respect that many people are. However, on some forums, there can be a very heavy religious and spiritual message presence. This may not be everyone’s ‘cup of tea’, particularly if it consistently overrides the main aims of the group.

Be prepared for strange behaviours

One of the most hideous aspects of forums is the appearance of ‘on-line bullying’ or arguments which happen now and then. Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’.  However, definition is important here. Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’. All this is going to do is to drive people away and make people more reluctant to ask or answer a question for fear of upsetting someone or being ridiculed. The vast majority of forums I’ve experienced, have little or no moderation and inadequate or untimely policing. A well-administered site will deal with it quickly and have round the clock moderation given the international nature of many forums. Administrators need to stamp on this sort of behaviour when it happens and not 48 hours after the event.  I once left a forum after very politely suggesting a different opinion to the ‘reigning clique’ which resulted in a coordinated and personal tirade against me (i.e. online bullying).  The posts were removed, indicating the administrators agreed with my complaint.  My advice is not to join an unmoderated forum, and if you see this type of issue and sense they are not being resolved, you should consider leaving that forum to prevent unnecessary stress. In another but different example of bullying, I was blocked from one US site without notice or reason and to this day I have never found out why, despite trying very hard (…..although I suspect ‘politics’).

Be prepared for masses of ‘tat’

Another area which puts me off most NET forums is the masses of ‘memes’, pictures, quotes, miracle ‘snake oil’ cures/medical myths and stuff you see plastered all over the internet – these things are the ‘junk mail/spam’ equivalent on Facebook and some can also be a security problem. I’m very surprised the administrators allow so many of them as they clog up the timeline making it easy to miss an important post and they can present security risks for those who click on them.  I get enough of this on my personal Facebook – no thanks!

Be prepared for masses of black and white striped stuff

I don’t do zebras, I’d rather talk with people and the things that actually matter to those people.  I therefore find myself strongly objecting to being described as a ‘Zebra’ and part of a ‘herd’.  As soon as I sense a ‘zebra infested’ site, I’m off straight away.  The NET community sometimes appears so infatuated by this aged, out of date, and misleading analogy, that it denies the correct level of support to those who are asking for help.  For example, side by side, a post (say) where someone is asking about side effects of a treatment or how to improve quality of life, or someone just asking for help, is likely to get much less views/likes/comments than a picture of a Zebra or something with stripes …… quite simply, that is not right and is why I won’t allow it in my own group.

The strange thing is that in contextual terms, the zebra represents the disease, so when someone says “I am a zebra”, this is in effect saying “I am a disease” or when they say “Dear Zebras” they are saying “Dear Diseases” or my pet hate, the cringeworthy “Dear Fellow Diseases”. The problem is that the NET community has become “too cute” with the term and it now lacks any ‘kerb appeal’ to the outside world (who should be the key recipients of awareness messages). It’s really holding back NET Cancer external awareness and is a PR disaster area. Even NET specialists are denouncing this infatuation, with one saying “we’re beyond that now”.

I have my own strategy for spreading awareness which seems to be well received and more understandable to EXTERNAL audiences and many NET patients. Moreover, my awareness strategy covers a much bigger spectrum than offered by the narrow and blinkered diagnostic messages inferred by this aged, totally useless and often misquoted equine analogy. I say Let’s stop dehumanising NET patients.

And, by the way, NET Cancer is not as rare as we keep being told.

Don’t let forums be your life

I’ve recently cut down my membership of groups, not only because they were not a good fit for me but because forums were actually stressing me out, mostly due to all the issues outlined above. So, I’ve left most groups, remaining in those which fit my requirements.  I advise you to do similar if you value your sanity.

So …………….

Are forums ‘frighteningly good’?

There can be a lot of positive outputs from many forums and to be truthful, I have learned a lot and made some online friends too.  I’m sure the forums are very useful for some people who are able to prioritise and filter to take what they want from the sites. Some people also use them as a lifeline due to a lack of support in their local area. In that respect, they are frighteningly good.

Are forums good at ‘frightening’?  

Yes, they can be good at frightening for those already in an anxious or delicate state or who want to discuss issues in a slow, deliberate and non-confrontational manner without being inundated with tat, myths, abuse, etc as per above.  I like to help people but for the first couple of months after joining forums in 2013, I found myself feeling totally helpless with the sheer number and range of problems.  Unfortunately, well-meaning people give totally different and dangerously conflicting answers, even to simple questions. I was also deeply concerned that ‘miracle cures’ which I knew to be internet myths were not challenged by the group administrators.

I ended up very frustrated even though I learned to prioritise and filter – I just felt bad that the questioner was getting no answer (50 different answers is no answer) or the fundamentally wrong answer. It also infuriates me to see a pathetic response to a cry for help right next to 100 likes for someone’s zebra coloured fingernails.

Summary

I now receive dozens of messages/emails every week but I find myself increasingly hesitant to recommend people I don’t know too much about to certain forums. Don’t get me wrong, I think some forum sites do a great job but they can be pretty frightening places for the unwary (and on occasion…. the wary!).

Thanks for reading

Please note, since writing this article, I have established my own group and my aim is to minimise the issues above as much as possible in order to focus on education with a supporting slant.  You can join my group by answering 2 simple questions. Click here

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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

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Dr Google will see you now

 

Searching your symptoms on the internet is

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn’t.

As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for patient issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise how difficult it can often be for a doctor faced with unusual, vague and nonsensical symptoms!

On a recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby!  

The internet is really powerful but also really dangerous.  For example if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits (e.g. fake healthcare news and cancer myths). Worried patients sometimes need help to distinguish between sensible advice and fanciful claims/ miracle cures.

When I combine my own experience with what I read on patient forums, I can see that internet searching is not for the faint of heart.  Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse.  In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet –  ‘Cyberchondriac’. 

However …..

Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers!  Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients.  It’s how we as patients exploit it that is really important.  Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office.  Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.  

The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship. 

Google-doctor-mug-300x300

Tips for online searching:

1.  Don’t actually use internet search engines if you can help it, go to a reputable site and then search that. For NETs try RonnyAllan.NET

2.  Try to be specific as possible because vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.

3. Less common conditions are less common, and minor symptoms often resolve themselves in time. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help. 

5.  If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable – check out my 8 tips article.  However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas. 

6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status, so be careful, I’ve been some complete rubbish on these sites.  Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening’. Personally, I try not to compare myself to strangers on the internet.

I will not compare myself to strangers on the internet
Graphic courtesy of Emily McDowell

OK, the lead graphic is slightly ‘tongue in cheek’ but for those who are very anxious, it’s a reality. I can see from my own group that many Neuroendocrine Cancer patients have become very adept at searching online – useful because many still need a lot of help.

Be careful out there it’s dangerous.  I have a private group for patients and caregivers where I like to ‘keep it real’. Check it out 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