RonnyAllan.NET – Newsletter 1st September 2020

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External news of interest

Not surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here’s a few items I picked up during August from my google alerts, from direct contact or from twitter (the latter is a key source for me to hear about what’s happening).

1. The Middle East Neuroendocrine Tumor Society (MENETS) will hold their first World NEN Lives 2020 Congress this September 23-24 virtually via Zoom. This congress is designed to showcase treatment options and ways to live better with and around NENs. The speakers include some of the top NEN world specialists as well as patients and caregivers. MENETS would like to invite all NEN patients and caregivers worldwide to go to the MENETS website and register and also to view the full congress agenda. The virtual capacity for the event is 500 registrants to get in quick if you would like to attend. I’m one of the patient speakers – just need to get to work on my presentation!

2. NET Research Foundation conference Oct 10th.  The NET Research Foundation is planning a virtual NET Conference on October 10th. . I find the NET Research Foundation’s presentations to be top quality with swift publication of a copy for those unable to tune in on the day.  Read more here.

3. Image guided chemotherapy.  I’m amazed no-one has thought of this before but NET Research Foundation has commenced a study into the use of Ga68 DOTATOC to precision deliver temozolomide, a chemotherapy drug already shown to have clinical efficacy.  Read more here.

4. Carcinoid.  Pleased to see another organisation join the call to stop using the term “carcinoid” in relation to a tumor or cancer.  As you know I’ve been pursuing this agenda for almost 4 years with this article but please take a read of the contribution from NET Research Foundation who have featured a quote from me as part of their own angle.

A bit of inspiration

I’ve been thinking (more like dreaming) about climbing Ben Nevis for some time – for those not sure where that is, it’s a mountain in Scotland and the highest in the United Kingdom at  1345 metres (4413 ft).  Here’s picture of Leanne who works for Neuroendocrine Cancer UK and helps patients.  She was at the top a few days ago and as you can see from the picture, it doesn’t look too warm, even in August.  Well done Leanne (plus those with her) and thanks for all you do for patients.  For those on twitter, click on the picture and retweet please!

Coping with lockdown

During August, I was quite active on my Facebook pages and in my private group in addition to looking after myself. It’s important in these times to keep active and not let everything get on top of you. We all have different ways of dealing with this and I hope some of you have found solace or advice in my private group or even just reading my various blog posts or on my public Facebook sites. I still see myself as someone at risk, but there are other risks at play here – mental health can be as important as physical health in times of stress and anxiety. 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. I also continued my diary until the middle of July with 12 episodes which were very popular when published on my public Facebook page. You can read Episode 12 by clicking here and it contains links to Episodes 1 through to 11. It might also give you some holiday or daytrip ideas if you’re planning!  I continue posting my outings on my Ronny Allan page and they appear to be well received.  Read my most recent here

I had a COVID test done in August and thankfully it was negative.  This was in response to being a long term user of a data app and reporting changes in symptoms.

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 – although I’m gradually reintroducing to some locations where I feel safe. However, it’s great that our family can now visit us at home providing we practice good social distancing. 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. We visited Cambridgeshire and the Yorkshire in August, two separate trips (the latter was a bit of a washout!).  We have a holiday booked to New Zealand in Feb 2021 and that is under constant review.  Plus we have many many many plans for staycations in UK. Look out for those. 

External work

  • 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). See external news above.  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”. Very grateful to my friend Mike Rosenberg for inviting me to speak and for adding my website alongside other illustrious organisations/individuals on the MENETS website.

August Blog Activity

A quite month in new blog posts.  In fact, other than newsletters, I only produced one article but have a few drafts on the go. Share with others please.  This article is entitled “Small intestine, large surgery” and is my way of saying this is not normal surgery, can be quite complex and there’s a need for some specialisms in approach and undertaking.  Read it here or click on the picture. 

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’ve been quieter on twitter which I’m finding depressing – I hadn’t realised how many trolls there on that medium, even within our own community. 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!

Private Facebook Group

This group continues to increase membership at pace and is now the biggest private Facebook group for Neuroendocrine Cancer. It’s amazing when you consider that I have set particular rules making it vastly different to other groups. You can join here, open to patients and their primary caregivers/carers/supporters.

Neuroendocrine Cancer Definitions. I continue to work on my A to Z facility – The A to Z of Neuroendocrine Cancer (copyright RonnyAllan.NET) 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 (as at 1 Sep, up to ‘N’) you will find a short description and then any of my posts tagged (so far) with that tag. 

Click on the picture to enter the definitions database

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

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

Ronny

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Neuroendocrine Cancer – a difficult jigsawMore stats5,062

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One thought on “RonnyAllan.NET – Newsletter 1st September 2020

  • Alison mcclure

    Hey Ron, So informative , interesting and inspirational Leanne climbing Ben Nevis looks freezing up there !.
    Wish you well at the World MENETS Congress as a patient speaker.
    Really appreciate your posts .

    Thank You
    Paul

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