RonnyAllan.NET – Community Newsletter May 2018

Summary for May

Different type of intro to my newsletter as it’s late due to unexpected illness.  In some ways, what happened in May is possibly connected.  I had quite a bit of work to do for a ‘Patients Included’ event in May in Berlin.  I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer.  I arrived back exhausted and turned my attention to another two things – a patient presentation to the inaugural UK Dietitian Group study day followed by a holiday to Wales. The study day was done on the way to my holiday, was very successful and I enjoyed it.  My holiday was also very enjoyable despite the travelling to and from the area.  The weather in UK has been mostly hot and muggy!

However, the day following my return from holiday, I sensed my chest tightening and this led to general fatigue, malaise, wheezing. coughing and (unusual for me) nausea and a single bout of sickness. Getting out of bed on Friday 1st June proved difficult (thus why this newsletter was not complete and not sent out).  One thing led to another and on Monday 4th June, I finally sought medical help (first lesson, that took too long to instigate).  Don’t let your poker face take over.  Armed with antibiotics and steroids, I set about repairing myself.  For good measure I also got a chest x-ray and some blood tests (tbc).  Just as well I was still strong enough to go to London for my very first Ga68 PET scan on Tuesday although my wife had to come with me given my fragile state.  I accept I took a risk here.  I’m still recovering as this newsletter goes out.

Better News

1. External Recognition. I’m absolutely thrilled to be in the Top 5 patient leader blogs to watch in 2018 as listed by WEGO Health. I told you I would take Neuroendocrine Cancer awareness to new audiences and I remain focused on that mission. According to WEGO Health, my blog is armed with facts, personal experience, and compassion. I never have time to assess what I’m doing so it’s useful feedback. And thanks also to NET Patient ‘Michael’ for his comment on last year’s nomination which has been used here.  Read more here.
2. Blog Statistics. Despite a lack of new posts due to the above mentioned external activities, May 2018 was still a record-breaking month (after April’s new high) with more than 30,000 views for the third time in three months. In summary, my blog views have accelerated in the past 3 months. Many thanks   This is recognition of organic growth caused by new activities, new contacts, wider use of social media outlets and an increased demand for the type of material I produce. 
3. WEGO Health Awards.  I received my first nomination for the 2018 awards – a return to ‘Best in Show: Community’, an award I won in 2016 – very exciting.  If you would like to nominate me for further awards (blog, Facebook, twitter, etc), see here how to do this.

Blog Site Activity in May

Due to the vagaries of Facebook inner workings, some of these articles created or updated in May 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. May 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

	Gallium PET Scans – Into the Unknown My latest article following an appointment schedule for 5 June 2018
	RonnyAllan.NET – Community Newsletter April 2018 – in case you missed it.
	PRRT Update – US patients please read and advise on new locations
	NETs no longer rare – don’t believe the hype – believe the math
	Patient Forums – Frighteningly good or good at frightening? An honest appreciation of the issues.  Some won’t like my text, if not, just move on to the next story.
	enterade trial for treating diarrhea in NET Patients – updated to include new data.

Despite a lack of posts due to external activities, …. May 2018 is now a record-breaking month (after April and May’s new highs) with more than 35,000 views (another 30k plus figure for the third time in three months).  Here are the top 10 most read articles which contributed to May’s figures:

Neuroendocrine Cancer – normally slow but always sneaky		1,672
Lutetium Lu 177 dotatate (Lutathera®) – PRRT		1,179
Neuroendocrine Cancer – Incurable vs. Terminal		1,136
Living with Neuroendocrine Cancer – Home Page		1,114
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor		1,024
Gallium PET Scans – Into the Unknown		960
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis		823
Don’t believe the hype – Neuroendocrine Cancer Myths debunked		814
Background to my Diagnosis and Treatment		727
Neuroendocrine Tumours – benign vs malignant		696

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). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
• 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, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  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 was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).
  

  Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 31 May 2018, there were almost 1100 people in the group.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

• I attended a medical conference in Berlin as a patient advocate and speaker.  This was not a NET conference so is very exciting for me both as a patient activist and speaker.  I contributed to 3 separate activities:
  • Patient Doctor Communications – read more here
  • The Changing Face of Palliative Care – read more here.
  • My uninvited guest: perspective on chronic disease in young and old – read more here
  • I made a lot of new friends who are all now aware of our type of cancer. I’m hoping for further involvement in future events.

• I presented a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  A wonderful initiative to tackle an unmet need for patients in UK.  There’s a lot more to come from this initiative.
• In May, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
• I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here

Article features

• NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
• Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.  Please be careful sharing personal data including in Facebook closed groups.
• 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:

• 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 and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 73 times on my personal account which led to over 62,000 views.  I was mentioned 91 times by other tweeters, 2046 people looked at my profile and I gained 60 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 resulting in an increase in blog hits and to a wider population than just NETs. 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.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. 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!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 awards are now open.  If you would like to nominate me for an award, ask me how.

Social Media and Stats

Blog Milestone.  At the end of May, I accelerated past 590,000 blog views! Thank you all so much ♥ Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6200 followers by the end of May but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so 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

• Facebook – 6200.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
• Twitter – 4538 / 3528 Follow me here @RonnyAllan1 / @NETCancerBlog
• Total Blog Views: 590,416
• Blog with most views: 16,855 – Neuroendocrine Cancer – Early Signs of a Late Diagnosis 
• Most blog views in one day:  3551 on 31 October 2017.  Why the spike? …..  “Neuroendocrine Cancer – tricks, no treats” 
• Most blog views in one week: 10,366 in April/May  2018.  Why the spike? …..  mainly “Neuroendocrine Cancer – tricks, no treats” 
• Most blog views in one month: 35,148 in May 2018.  Why the spike?  See above.

Summary

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 May.  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

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