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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On the Cancer Journey, don’t forget to live your life

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is.  In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets.  With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey. Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions.  Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors and you are sure the destination has been reached.  In a few cases, journeys may be extended or new ones started.  For late stage incurable NETs, thinking your journey is going to be a short…
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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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My illness may be invisible, but I am not – Neuroendocrine Cancer

My illness may be invisible, but I am not – Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Survivorship
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years before making a vague announcement I had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought.  Sorry…
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I have walked 500 miles and I will walk 500 more (….. sing along)

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, Survivorship
https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021.  I can now confirm, I'm halfway there in 5 months.  I have buffer time ..... but only if I keep going.  By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014.  500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite but working on it (haha).  I have several incentives, including: As a stage 4 cancer patient, I want to be as fit as possible to withstand any rigours I may…
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If it’s not raining, it’s not training! (part 2)

If it’s not raining, it’s not training! (part 2)

Inspiration, Survivorship
As someone who was born and raised in the Scotland, and lived most of my life in the UK, I'm no stranger to inclement weather.  In my 29 years years in the military, the weather was no excuse to do nothing, whether it was training or the real thing. They gave us wet weather clothing after all!  There is a saying in the UK army and it goes like this "If it's not raining, it's not training".  In classic British pragmatism, it decodes to "raining is normal so get on with it".  In fact, one of my oldest army friends cannot wait for the torrential rain, he much prefers it to the sun!  Read his blog here.  We've been caught out over the years, for example back in 2016, a…
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The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship
An Opinion Post Edit:  September 2020.  I believe the flu shot is even more important in the era of COVID. This is an illness that typically spreads in autumn and winter. A major flu outbreak would not only overwhelm hospitals in the coming months (the so-called "twindemic") but also likely overwhelm a person who might contract both at once.Edit:  October 2021.  Ditto. Edit:  September 2022.  Ditto. Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my susceptibility to chest infections and flu may be dangerous for me, and having got this far beyond diagnosis, with an…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I have a lot to be thankful for [caption id="attachment_24013" align="aligncenter" width="1024"] Click on the picture to read[/caption] Not intended to come over as a pity party No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! [caption id="attachment_14152" align="aligncenter" width="640"] Click on the picture to read[/caption] No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES [caption id="attachment_3720" align="aligncenter" width="391"] Click on the picture to read[/caption] No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy.  I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, I wasn't actually ill! Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (....... "I think I've lost a bit of weight").  My haemoglobin…
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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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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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Shrek and Princess Fiona

Shrek and Princess Fiona

Humour, Inspiration, Survivorship
I was looking through some old photographs and came across this one I thought you guys might like.  It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time.This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex paratrooper) and his lovely wife Babs.  Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit 'peaky' on the plane. Despite a…
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