Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition for almost 8 years and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine. So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable! Take a break if you need one. Thanks for reading Ronny…
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Shame on you!

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I don't look ill.  I didn't even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer.  People have even told me I look better than many people my age who do not have an incurable disease!  There's a bit of me which is very happy with that predicament, although I'd rather look less good and not have cancer. Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don't look ill but I know they have a life threatening disease and things could change quickly.  For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful.  Some…
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Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: ronnyallan.com and/or NET Cancer Blog   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 Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life! Please Share this post
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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  OPINION. There's a lot of inaccurate and out of date information out there.  Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda. Myth 1:  All Neuroendocrine Tumours are benign Not true.  By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'.  Sure, some NETs will be benign.  However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.  This has been…
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Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption]   Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…
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“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
If there's a word which is synonymous with cancer, it's chemotherapy.  It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'. I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease.  Cue - lengthy explanation!  I wasn't annoyed by the question, I just think people automatically assume every cancer patient has to undergo some form of systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair. Sure, chemotherapy is not the nicest treatment to receive and it does have pretty…
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“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the 'perfect picture of health'.  She…
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Not every illness is visible

Not every illness is visible

Awareness, Living with Neuroendocrine Cancer, Survivorship
I personally don't see myself as 'disabled' but I do have an invisible illness. I'm fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do! [caption id="attachment_13469" align="aligncenter" width="720"] Situation normal, right? [/caption] I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain).  Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and…
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Make some noise for a silent cancer

Make some noise for a silent cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people's interest. In the last 36 months, I've generated a few 'different' awareness campaigns, some of which have been more successful than others and I learn from this.  One of them is actually now the most tweeted post about NETs on twitter.  Fortunately, I have had significant help from YOU because if you did not share my posts…
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I look well but you should see my insides

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
[caption id="attachment_3720" align="aligncenter" width="400"] Perceptions[/caption] I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away.  I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around, the temporary beds and the waiting room are full and all I can see is people who don't look as well as I do.  Some have hats or bandanas partly disguising the loss of hair. I feel for them. No matter how many visits I make, I can't help feeling out of place on a Cancer ward. I'm not sure why I feel like this; after all, I've had some very scary surgery and I'm still being treated after 7 years. However, this thought doesn't seem to balance it out -…
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Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_2784" align="aligncenter" width="500"] Things are not always how they seem[/caption] In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience and we met some really interesting people on our 6 day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was therefore relieved I hadn't responded to her initial rudeness. However, It got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what's going on inside their heads and bodies. Visible Illness can have awareness benefits Conversely in 2018, I was absolutely…
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