Happy New Year from Ronny

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny
Another year of survivalI normally only do a Facebook happy new year, but I wanted to make sure I reached everyone who follows my blog and other social media outlets.    All of the outlets above have kept my viewing figures high and although I only beat 2021 viewing figures by almost 10,000, it is an upward trend, so I'll take it!2022 was an amazing year in many respects. I continue to live well with Neuroendocrine Cancer, almost like a chronic disease.  I'm not foolish enough to think I don't need surveillance though.  That is ongoing, including regular contact when required with my primary and secondary care contacts.  The biggest problem I've had this year has been succumbing to "the other big C" (after avoiding it for 28 months!) and…
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A Christmas 2022 message from Ronny

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny
Background to 2022I've only ever sent these on Facebook but this year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter, Facebook, Newsletter or direct from a subscription to my website.  All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2022 total of around 270,000 blog hits and hitting the milestone of 2 million blog hits in early November - that was a major boost.  It takes 3-4 years to get a million hits based on current performance. This has been a challenging year, mainly because the pandemic had some impact on my social media activity and also in terms of growth.  2020 and 2021 were slower than normal…
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We are still here!

We are still here!

Inspiration
I'm always amazed at the responses to my post "I'm still here" and it has become a bit of a catchphrase I use, even in response to a question in my private group.What I see is that many of us are still here and I wanted to dedicate this post to those who frequently join in with my "I'm still here" posts.I'm glad you're still here too.  Share or comment if you agree!We are still hereCheck out the fantastic response to my 5th year 'cancerversary' post.  Click here to be inspired. Missed out 6th!!!Check out the fantastic response to my 7th year ‘cancerversary’ post. Click here to be inspired.Check out the fantastic response to my 8th year ‘cancerversary post’. Click here to be inspired.Check out the fantastic response to my 9th year ‘cancerversary post’. Click here to…
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“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

Inspiration, Living with Neuroendocrine Cancer
Judy Golz is a retired registered nurse — she’s also a neuroendocrine cancer survivor.  Like many nurses who get cancer, their experience in working in the healthcare industry possibly helps get a quicker diagnosis, possibly because they can recognise symptoms and likely differential diagnoses and it possibly helps knowing how the healthcare system works. But with uncommon and complex diseases, it's not always that straightforward, even for a nurse or any other healthcare professional.  But Judy makes an excellent point about the quantity and quality of medical information now out there, including for Neuroendocrine Cancer and suggested she would be in a better place for self-diagnosis today. Two things spring to mind about this story. Neuroendocrine Cancer is such a complex disease, it can often be hard for healthcare professionals to…
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25 Life Lessons From a Two-Time Cancer Survivor

25 Life Lessons From a Two-Time Cancer Survivor

Inspiration, Survivorship
Sometimes, a blog post comes along and it just resonates!  I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below.Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated them into one very powerful list.  I'm not suggesting they all apply to everyone but perhaps even a 'pick n mix' approach would be useful.  The first 10 are here, you…
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Neuroendocrine Cancer – If you can see it, you can detect it!

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship
BackgroundScanning is a key diagnostic support and surveillance tool for any cancer.  Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it.  Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one.  Even in the case of a story about late diagnosis or a misdiagnosis, I find myself thinking 'if only they had done a scan…
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WEGO Health Patient Leader: Ronny Allan – Living with Neuroendocrine Cancer

WEGO Health Patient Leader: Ronny Allan – Living with Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
WEGO Health has the largest network of patient leaders in the world.  Every year they recognise them via their renowned awards process. I first discovered them in 2016 and decided to apply.  As at 2021, I have now won 3 awards, been in 8 finals following around 27 nominations for various categories. WEGO Health and many of their patient leaders now know about Neuroendocrine Cancer.  The story of WEGO Health and my experience with them is outlined below.  I encourage you to watch the 2021 announcements below, so inspiring.  The 2021 awards were special because all records were broken in terms of nominees.  From 21,000, that had to be reduced to just 96, 6 in each of 16 categories.  It's quite a feat just to get into the finals and…
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Living with #Cancer – if you’re reading this, you’re surviving

Living with #Cancer – if you’re reading this, you’re surviving

Inspiration, Living with Neuroendocrine Cancer, Survivorship
You may sometimes feel like you're not surviving but if you're reading this then you most definitely must be! For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was going to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) - well done NCSD.Org - you should check out the site and sign up for their newsletter What is…
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