Ronny Allan – Living with Neuroendocrine Cancer Blog – A MILLION views

I’m totally astonished to have been able to accumulate a million views of my blog. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian’s Wall with my wife Chris. I never thought for one minute I would still be doing it today reaching one million hits and accumulating over 14,000 followers across all my social media sites.  This is an update of an article from 7 March 2018 when I passed the 500,000 mark – so that is a staggering half a million views in 15 months to double that tally.  All thanks to you!

 

 

 

My key aims are international level awareness, advocacy, campaigning, and support for NET patients via all my social media accounts. I’m not your regular NET advocate and I do things differently. However, I’m fairly certain that specific fact has played a part in getting to this stage.

People often ask me how I’ve been able to build up my sites and it’s a difficult question because I’m not totally sure what happened!  I just put my head down and attacked the task in my usual tenacious way – so I guess that’s part of my sub-conscious and inbuilt strategy.  I did write an article about my blog journey for WEGO Health for those interested – read here

My blog is pretty central to my activities and through this medium and some others, I’ve really invented my own brand of Neuroendocrine Cancer awareness without following the crowd. I pride myself on my independence which allows me the freedom of movement I need. So far I’ve managed to win two international awards breaking through into new areas for awareness.  In 2016, I won the WEGO Health Best in Show Community followed by Best in Show Blog in 2018, and also made the finalists in several others.  I might take a break from the 2019 awards!

Other Advocate Activities

I’ve also spoken at many events and to pharma only audiences including Ipsen Global Paris, Ipsen UK, Ipsen Germany, Ono Pharma UK, Royal Marsden Hospital, Wales NET Patient Foundation, PLANETS Southampton, Eye for Pharma London 2018, EUHIC Berlin 2018, Society and College of Radiographers (due Oct 2019). 

I’m also a contributor to Cure Magazine although only two articles published to date (see my signature block below)

Other invitations include the making of an education video for Lex Pharma, helping to create and featured in Ipsen‘s patient support website Living with NETs, a photo shoot for a Macmillan Cancer internet campaign, a photo and video shoot for Ipsen as a member of the European Pharmaceutical Industries and Associations (EFPIA) (link to follow when published).  I’ve also been featured and/or mentioned in numerous other locations – read my blog site home page to read more.

Board Membership

I’m a member of the following boards:

2019 WEGO Health Patient Advisory Boardclick here to see my WEGO profile.

2.  ONO Pharma UK Patient Advisory Board (to follow if publishable)

3. Multi-Med Inc Strategic Advisory Boardclick here.

My main sites are here:

Blog – ronnyallan.NETClick here.

Twitter – @ronnyallan1 and @netcancerblog

Facebook – I have numerous accounts:

      • NET Cancer Blog (my main site with around 8000 followers as at June 2019) – click here and ‘Like’
      • Ronny Allan – additional output – click here and ‘Like’

Newsletter – extending the reach into wider areas via a daily newsletter from twitter and other sources. click here to subscribe.

Instagram – click here to follow

Private Facebook Group (Educational focus) – I also have a private Facebook group which the fastest growing group in the NET community  – click here to join (don’t forget to answer the questions).

Many of you who read this will already be on these sites so please ‘Follow’ or ‘Like’ as appropriate – be careful you don’t ‘Unfollow’ or ‘Unlike’.

There are so many other sources of routes into my blog and I’m grateful to the many patient advocate organisations, patient advocates, the healthcare community in general and many, many, more. If you’re reading this, thank you so much.

Patients Included

Everything I do is about patients and my site is accredited as “Patients Included”. That means everything has to have patient input.

Please also note:
All information provided on any of my social media accounts does not constitute professional medical advice. See my disclaimer here: DISCLAIMER

Message me here: http://m.me/NETCancerBlog

Thanks for reading

Ronny

Thanks for listening

 

Author: Ronny Allan

Facebook: https://m.facebook.com/NETCancerBlog and https://m.facebook.com/RonnyAllanBlog twitter: @ronnyallan1 twitter: @netcancerblog

13 thoughts on “Ronny Allan – Living with Neuroendocrine Cancer Blog – A MILLION views”

  1. Hi Ronny, lm just reaching out – in a predicament over my husbands treatment plan. He had a pet scan and bloods taken in January, it was given the all clear to have PRRT. His recent blood tests show low platelets, but rising. It was suggested that the pet scan was responsible. They have now said that actually, due to the amount of cancer he has in his liver, they are reluctant to give any PRRT. Surgery is now being discussed, which has been ruled out in the past 3 years as being too risky. We have lots of specialists discussing us at the moment. He has had streptazocin and everolimus, which he reacted very badly to. He had PRRT three years ago which really worked. He is healthier than he was back then. Our issue is that if the liver is operated on it is a three month recovery. What happen to the cancer in the pancreas and bones. It is very frustrating to say the least, because of the initial decision being changed.
    This is complicated, but l wanted to hear the thoughts of some one that understands.
    Many thanks
    Lisa

    1. sorry your hubby has had to go through all that, you too. This is a tough question. There is multiple treatments involved and sequencing adding to the platelets issues. As you said, it’s complicated. Lets take my own experience. My liver tumours were slightly more aggressive than my primary (small intestine). I had surgery with a very experienced liver surgeon, he took out 66% of my liver, it kinda grows back. I still have some tumour deposits. My Chromogranin A (tumour bulk) didn’t reduce until liver surgery (my primary was removed 4 months previously). I’ve never had PRRT but I do know it’s a good treatment and works for most. I still don’t understand some of the intricacies of it though, in terms of risks, except I know renal issues can be. I’m guessing he’s Grade 1or 2 ?

  2. I very much appreciate what you do, Ronny. We have reposted some of your stories on our new PRRT SEATTLE Facebook page. We are trying to get the word out to patients that PRRT is available now for our disease. I am the first person in Washington State to get PRRT. Am currently half way through my treatment. Keep on getting the word out there!

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