Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions 2 – the bench walk

This is the second part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing “a new and continuous cough”, I documented almost daily during this period but only on my public Facebook page entitled “my 14 day self isolation diary” – I compiled it here – click here to read.

In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still allowed out for some exercise and other essential trips such as doctors appointments and shopping for essential items.
The Bench Walk (13th April 2020)

Another week of lockdown and in the UK, this week we will find out what, if any, changes will be made going forward and for how long it will be extended – it will almost definitely not be 100% lifted. I’m not on the UK shielded patient list (SPL) but I’m still ‘At risk’ so social distancing remains important. Edit: I’m now on this list

Clearly we’re spending a lot of time indoors and we probably go over the top in protecting ourselves (if there is such a thing). We received an essential food delivery today, it was like a military decontamination operation. I could do with a particular type and colour of paint and am working on that to complete a job I started. And our windows have never been cleaner!

We’re lucky to live in a relatively small town and close to the edge of that town – only a few minutes walk and we’re in the countryside. We are taking short walks for around an hour, so this allows us to avoid contact as much as possible. For our last walk, we targeted a spot we know – see picture.

Thanks for continuing to support my posts and website – https://ronnyallan.net/ – hits are down but that’s understandable. Thanks again all and stay safe and sane please.

Over this period, I seemed to have quite a lot going on though ……

Judging the World’s top patient leaders

Around the same period, I helped out judging a WEGO Health competition alongside other patient leaders in Mental health, IBD, Breast Cancer, Bipolar Disorder, Invisible Illness, Lupus, Asperger’s, Fibromyalgia, RA, Schizophrenia – so another opportunity to be showcased as a Neuroendocrine Cancer representative. I’m always happy to help out and this task was to help select the best candidates in the WEGO Health 2020 Patient-Choice Awards, a program honoring the top pharma organizations, collaborations, and programs demonstrating innovation in patient collaboration to drive improved adherence, engagement and health outcomes. I was judging the ‘Champion for Patient Collaboration’ section and it was really really tough – so much quality out there – I thought Bianca Jay was outstanding and she went on to win gold. Also must mention Lindsay Smith who won silver. Well done both. But the others were extremely good too! Make sure you follow WEGO Health if you’re on twitter https://twitter.com/wegohealth – and their Facebook page is worth a like too (linked above).

The 9 year anniversary of my liver surgery

Everything seemed to be happening at once which is quite exciting when you’re in a lockdown! Nine years earlier on 11th April 2011, I was admitted to hospital for a planned liver resection. The actual surgery was on the 12th but I had to go in early to receive perioperative treatment with intravenous octreotide (colloquially known locally as an “octreotide soak”). Last year, I spoke to the surgeon who conducted the keyhole operation. He was at the time the head of the MDT (now ENETS Centre of Excellence). He was pleased but also surprised, that my liver remains stable, the remaining deposits seem to be subdued. Those in the south central area of England will know Mr Neil Pearce. Read about my liver surgery here.

Updated website

The lockdown did give me some time to look at a new software package I had to help convert my blogsite into a website – this is still ongoing but check out my new menus.

Private Group. There’s a constant stream of new members and discussions continue in this Facebook private group (click here to join). The group is quieter than usual but Neuroendocrine Cancer issues continue, people continue to be diagnosed and arrive in need of help – often just someone to listen. London and New York are the biggest two cities represented in the private group and I see them both in the headlines – please take care all.

Many thanks and stay safe

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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