Newsletters have returned!
I ceased publication of monthly newsletters over a year ago, mainly because they were time consuming to compile and the impact was less then my average post in terms of feedback. However, since going into COVID-19 lockdown, I’ve given that some more thought. Going forward, I’ll be sending you out a newsletter each month including an email version as soon as I can get my mailing system software up and running (I’ve been busy during lockdown!)
Coping with lockdown
During April and May, I decided that I wasn’t going to hide away during lockdown despite the fact that 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. If 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.
I’m not quite finished my April/May series of ‘coping’ articles but I compiled them here for you below – enjoy!
Much of the time was spent in the house and new or increased activity included, sitting in the garden (fortunately we have had very good weather in UK), watching TV and box sets, reading, short walks (the longer ones are mainly compiled above). One new thing was online quizzes with the family and video conferencing with relatives rather than phone calls. Chris’s mum is in a care home and they are on total lockdown, no visitors. Chris was so pleased when they instigated video calls. I did quite a bit of searching and research on online shopping and I managed to get some grocery slots. I will not be going into town or shopping for a while yet. Chris sometimes shops but we have a very strict decontamination procedure and a whole room devoted to temporarily isolating that don’t need to go into fridge or freezer – everything is washed or wiped. This also happens with mail. It’ll be a while yet before we relax this routine.
Website and Social Media updates
Some of you will have noticed I’ve reduced my Facebook pages from 5 to 2 and this is how I’ll operate going forward. These Facebook pages are really the social front end to my website – RonnyAllan.NET
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 my work. 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!
I’m quieter on twitter which is currently quite depressing – I hadn’t realised how many trolls there are out there but I guess many people are quite frustrated by COVID-19.
I’m working on an A to Z facility and it’ll probably take me some months to complete. It’s quite usable if you just wanted to find an article containing a particular term. I’m having some technical difficulty with the functionality and need to find time to populate the terms but take a look to see if it’s any use to you now. Click a term and it will currently take you to the posts containing that ‘tag’. The A to Z of Neuroendocrine Cancer
- 1,796,079 views
- I continue to be contacted by external organisations for some input. I shared a NET survey earlier in May, this came from an unexpected source (WEGO Health) and a sign that our disease is becoming more well known in non-NET circles.
- 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. I think it’ll be appearing in their company newsletter and will try to get a copy to show you.
- I’m being contracted to make a short patient video about coping with living under COVID-19. If that comes to fruition, I’m sure you’ll get to see it. 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!