Live Blog Stats
- 1,607,467 hits
I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and now in December 2020, a Christmas present of one and a half million! 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 reach 1.5 million hits and accumulating around 17,000 followers across all my social media sites.
I’m now heading for 2 million and I often think I might have a screw loose by even thinking about doing that! However, the hits keep coming in – THANK 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 rather than follow the crowd; and I’m certain that 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 tricky question because I’m not 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 author an article about my blog journey for WEGO Health for those interested – read here
My blog is central to my activities and through this medium and some others, I’ve really invented my own brand of Neuroendocrine Cancer awareness. I pride myself on being an international and independent writer 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 plus finalist in another category, made it to 3 finals in 2017/18 and then won Best in Show Blog in 2018. I’m taking a break from 2019 awards, it’s really hard work. I may re-enter the fray at some point
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.
In 2020 I’ve generated videos for Neuroendocrine Cancer UK (Becoming your own expert) and for Middle East NETs (Living with NETs as a Chronic disease). You can watch these by clicking here for NCUK and here for MENETS.
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 (click here), a photo and video shoot for Ipsen as a member of the European Pharmaceutical Industries and Associations (EFPIA) (click here). I’ve also been featured and/or mentioned in numerous other locations – read my blog site home page to read more.
Board Membership
Member of the following boards:
- 2019 WEGO Health Patient Advisory Board – click here to see my WEGO profile.
- ONO Pharma UK Patient Advisory Board (now disbanded).
- Multi-Med Inc Strategic Advisory Board – click here.
- Ipsen Patient Advisory Board for their Living with NETs website.
Patients Included
Everything I do is about patients and my site is accredited as “Patients Included”. That means everything must 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
My main sites are here (be careful not to unfollow or unlike!):
Blog – RonnyAllan.NET – Click here
Twitter – @ronnyallan1 and @netcancerblog
Facebook – I have numerous accounts, here’s the main 3:
- Neuroendocrine Cancer – my main site with around 10200 followers as of Dec 2020) – click here and ‘Like’ (BUT don’t unlike!)
- Ronny Allan – additional output, more personal – click here and ‘Like’ (BUT don’t unlike!)
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).
Message me here: http://m.me/RonnyAllanBlog
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’. Please don’t send friend requests to my personal profile, I need that for my ordinary life!
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.
Top Posts & Pages in the last 48 hours (auto updates)
Thanks for reading.
I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’
My Diagnosis and Treatment History
Check out my Podcast Interview (click and press play)
Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
Thoughts on TACE treatment…I would like to hear if anyone has had and their experience. I’ve been diagnosed w Carcinoid Tumor Colon w Liver Mets or well differentiated Neuroendocrine Tumor. I’ve had section of colon removed, Y-90 Treatment recently to my liver and I am now trying to get approval for TACE. Like most of your posts I too have had gastro experience for many years believing I had IBS and flushing thinking I had an allergy,
I had a battle w kidney stones for a few years now and my most recent sent me to hospital to find out I had a large NET in my colon (after spending 5 hours in ER an MRI, CT Scan and Ultrasound, and a second Radiologist diagnosed it five mins prior to me leaving the hospital) and was told I had cancer. It’s been 6 mos Now. My oncologist wants me to begin injections once my treatment is complete and Tumors are shrunk or gone. I feel like I’ve been on some wild roller coaster ride, No one tells you what to expect or can really understand, so thank you for all you do Ronny and all who are posting.
Thanks Julie, this has come through on my blog site, do unlikely to get a response other than from me. If you wanted to hear from people who’ve had TACE, you need to post in my private Facebook group.
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
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 ?
No?
I just got likes and comments from ‘Crystal Tipps’. Coincidence!
I was intrigued so checked, and there are a few Crystal Tipps on FB, one with a connection to NETs, what a strange coincidence indeed!
[…] Ronny reaches half a million views […]
[…] Ronny reaches half a million views […]
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!
Any issues with insurance?
[…] Ronny reaches half a million views […]
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Well deserved👍🏻
Have you got a new facebook account?
No?
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