RonnyAllan.NET – Newsletter 1st July 2020

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Coping with lockdown

During June, I decided I continued to be active outside despite the fact I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma. Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping. Of course the outdoors is also a garden (yard) and so that counts too!  Back in March I told the story of my own symptomatic period and perhaps one day I might find out if I have antibodies when I’m tested accordingly. You can read this COVID-19 diary by clicking here.

Things must be looking up as I’ve had a haircut. 

June Blog Activity

I seem to have managed to write quite a few blog posts in June, more than ever.  Things must be getting back to normal.  If case you missed any, check them out here:

RonnyAllan.NET – Summary of November 2022

In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is

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In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests

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Incurable isn’t terminal

Opinion Words are important I was diagnosed with stage IV cancer in 2010.  OK, it wasn’t a really aggressive type but it had caused a

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The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson – Neuroendocrine Cancer I have been following Wilko’s cancer story

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Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Definitions – the differences between Hereditary vs Familial vs Genetic Disorders I wanted to start with these definitions because people may unintentionally use these three

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Neuroendocrine Cancer: Those who know, know!

Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community.  Some ‘get it’ but many don’t.  Most

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Ask More, Assume Less

This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare.  OK, that

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Piss off Cancer, it’s been 12 years since my “big surgery”

I’m still here I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no

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Neuroendocrine Cancer: 10 questions your dietitian will ask

Background to Diet and Nutrition  This is clearly an important topic for many patients.  In my group, it is the 12th most common topic out

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Routine Living

Despite some fairly big relaxations to the UK lockdown rules, I have not changed my cautionary approach too much, still staying away from towns and shopping.  However, it’s great that our family can now visit us at home providing we practice good social distancing outside the house. We’ve since had a few visits and vice versa.  

We are now in serious holiday mode but local days out plus a few days here and there.  Currently looking at half a week up on the east coast of England exploring the coast of East Anglia. 

Website and Social Media updates

Website. Some of you will also have noticed a change in the layout of my website to include more menus for easier navigation and more sharing buttons to help you share what you like and find useful for others. Thanks if you’re using them already. If you wanted to practice, you’ll see them at the top and bottom of this newsletter – share away!

Twitter. I’m quieter on twitter which is currently quite depressing – I hadn’t realised how many trolls there on that medium but I guess many people remain frustrated by COVID-19 and many other political issues. Still sharing my twitter newsletters though – sign up here

Email Newsletters.  I’m still learning how to release newsletters like this one plus other ad hoc stuff, I should have that in place by the next monthly iteration – look out for a new email template, then you’ll know!  You can sign up for these newsletters in the form elsewhere in the side or bottom of the post – it takes around 5 seconds! 

Neuroendocrine Cancer Definitions.  I continue to work on my A to Z facility and making progress – I now have a structure with many definitions already linked to at least one blog post.  It’s quite usable if you just wanted to find an article containing a particular term. I’m currently getting rid of unwanted terms and updating new ones to link to my website.  Try it out, you might be surprised how useful it is despite its ‘in construction’ condition. In the database, click a term and it will currently take you to the posts containing that ‘tag’ and where I’ve populated so far, a short explanation. The A to Z of Neuroendocrine Cancer

Click on the picture to enter the definitions database

External work

  • Early in the lockdown, I was interviewed over the telephone by a Pharma company after writing an article about their product currently in clinical trials. This was a surprise call but was happy to help. You can read the interview above in one of the posts released in June or just click here
  • I made some short patient videos about coping with living under COVID-19. If they get published, I’m sure you’ll get to see it. Stay tuned.
  • I took part in a podcast interview for a US based patient support site – awaiting publication. Stay tuned. 
  • I’ve been invited to take part in an online NET conference organised by the Middle East NET Society (MENETS). This is a virtual online event where the speakers will be well known NET Specialists and patients. I think my talk is centred around “Patient Orientation”. MENETS is in the process of validating schedules and will be ready to publish the initial agenda by the end of July 2020. In the meantime, you can save the date – click here for more details. Very grateful to my friend Mike Rosenberg for inviting me to speak and for adding my website alongside other illustrious organisations on the MENETS website. I met Mike in Barcelona – he still owes me a Creon!

Thanks for all your support in June 2020, it’s really much appreciated.

Looking forward to a much safer July.   Go on, try the share button!

Ronny

 

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