03 Sep 2023
By Ronny Allan
4 Comments
Passive patient or active advocate?

Passive patient or active advocate?

Awareness, Inspiration, Survivorship
I've been researching Neuroendocrine Cancer for some time now.  Why do I do this?  Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this…
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27 Aug 2023
By Ronny Allan
15 Comments
Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship, , , ,
Diagnosis The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist.  There were many hints along the way, but it did not reduce the out of body experience I was having that day.  This happens to other people but not me. I felt in control Rewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy…
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26 Aug 2023
By Ronny Allan
16 Comments
Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , ,
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially…
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26 Jul 2023
By Ronny Allan
4 Comments
13 years – I’m still here!

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 13 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
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24 Jul 2023
By Ronny Allan
2 Comments
Sometimes you gotta climb that hill, even if you get wet!

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, Survivorship, ,
Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor.  The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor.  We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point.  The clouds were moving fast over our heads, dropping their rain each time.  We still had to climb to the top and it…
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18 Jul 2023
By Ronny Allan
1 Comment
A person with Cancer fell into a hole and couldn’t get out……….

A person with Cancer fell into a hole and couldn’t get out……….

Awareness, Patient Advocacy, Survivorship, , , , ,
A person with Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper. A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still…
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10 Jun 2023
By Ronny Allan
6 Comments
Sometimes, you gotta climb that hill, even if it hurts

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, Survivorship, ,
I started my "sometimes you gotta climb that hill" series/campaign some years so.  I used it as a metaphor based on my own experience of actually climbing up hills.  In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that.  But in hindsight, I don't believe I could have done some of these hills before I was diagnosed!  To be bluntly honest with myself and you guys, I was too busy at work…
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03 Jun 2023
By Ronny Allan
1 Comment
Getting back in the saddle

Getting back in the saddle

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny,
a 50-mile ride - ribs feeling fine! After a month of chest infection 2023/24 The "getting back in the saddle" metaphor I thought back about a few periods since my diagnosis on 26th July 2010 about how I would 'get back in the saddle'. I suspect many cancer patients experience similar junction points in their own journeys.  After I was told about my metastatic Neuroendocrine Cancer, work was my anchor, something that I felt comfortable and in control, so in effect that was my metaphoric saddle in the early days. But as my treatment came into view, particularly major surgery,…
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16 Apr 2023
By Ronny Allan
3 Comments
Neuroendocrine Cancer: looks can be deceiving

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
Is this the face of a cancer patient? Yes, it is actually.  This photo was taken on 31st October 2010.   Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases.  Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …
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05 Mar 2023
By Ronny Allan
0 Comments
Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment,
The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…
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03 Jan 2023
By Ronny Allan
2 Comments
RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost.  It takes 3-4 years to get a million hits based on current performance.  To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened!  I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth.  2020 and 2021 were slower than normal but 2022 has seen some pickup.  Some of it is due to less writing…
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31 Dec 2022
By Ronny Allan
4 Comments
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…
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23 Dec 2022
By Ronny Allan
2 Comments
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…
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14 Dec 2022
By Ronny Allan
0 Comments
A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment, , ,
BackgroundIt's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging.  This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3…
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08 Dec 2022
By Ronny Allan
0 Comments
Lanreotide Ipsen: 13 more years

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, Treatment, , , , ,
Update 11th Jan 2024.  Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen.  Clearly to distinguish its product from the generics now rolling out.  Not seen similar yet for Somatuline Depot (US). I once wrote a blog entitled "Four more years".  I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times).  As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views.  I can tell you now,…
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05 Nov 2022
By Ronny Allan
0 Comments
Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , ,
Incidental Findings in SSTR PET Somatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive.  However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error.  Included in these pitfalls are incidental findings. What is an incidental finding?  An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed…
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10 Oct 2022
By Ronny Allan
0 Comments
Evidence of disease but stable

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , ,
Musings from a metastatic NET patient of 15 years plus In every surveillance session I've had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to "stable".  After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…
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28 Sep 2022
By Ronny Allan
1 Comment
Living with cancer: 5 tips for facing things you can’t control

Living with cancer: 5 tips for facing things you can’t control

Inspiration, Patient Advocacy, Survivorship,
I'm wired not to worry too much about something I cannot control.  For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through.  For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them.  I once wrote an article called "Scanxiety, I just don't get it".  In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for…
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05 Aug 2022
By Ronny Allan
0 Comments
Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials and Research, Inspiration, Patient Advocacy, Survivorship, , , , , , , ,
Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell.  Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary).  The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…
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26 Jul 2022
By Ronny Allan
14 Comments
12 years – I’m still here!

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 12 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
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12 Jul 2022
By Ronny Allan
2 Comments
Me and the other big C – June/July 2022

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, Survivorship
Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available.  We both had bad colds/flu in March 2020 but we will never find out if that was covid or not.  I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020.  To…
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04 Jun 2022
By Ronny Allan
5 Comments
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…
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08 Apr 2022
By Ronny Allan
1 Comment
My illness may be invisible, but I am not

My illness may be invisible, but I am not

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…
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03 Jan 2022
By Ronny Allan
0 Comments
Blog review and top 10 for 2021: RonnyAllan.NET

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials and Research, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
I should be happy with over a quarter of a million views in 2021 but I'm not!  Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project.  I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer…
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20 Nov 2021
By Ronny Allan
2 Comments
20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment, , , , , , , , , ,
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first…
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02 Oct 2021
By Ronny Allan
1 Comment
The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship, , ,
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global…
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11 Sep 2021
By Ronny Allan
0 Comments
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
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09 Sep 2021
By Ronny Allan
6 Comments
UK Travel Insurance – please give cancer patients a break!

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny
Updated and reviewed 20th February 2026 - UK travel insurance - opinion.  FOR UNITED KINGDOM (UK) NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients.  One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned.  This is based entirely on my own experience and decisions.  I also declare no interest in any of the companies listed,…
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02 Sep 2021
By Ronny Allan
6 Comments
In the early days, I thought I was going to die

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, Survivorship, , , , , , ,
Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
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08 Aug 2021
By Ronny Allan
1 Comment
Cancer-related fatigue (CRF) – The NET Effect

Cancer-related fatigue (CRF) – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect Series, , , , , , , , , ,
In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…
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04 Aug 2021
By Ronny Allan
8 Comments
Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , ,
I do a lot of writing about NETs but I guess I've also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides.  Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal.  I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
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26 Jul 2021
By Ronny Allan
7 Comments
11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 11 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…
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31 May 2021
By Ronny Allan
4 Comments
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…
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13 Feb 2021
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Follow up tests and checks

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…
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01 Dec 2020
By Ronny Allan
15 Comments
2 Million!

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million!  Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall…
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15 Nov 2020
By Ronny Allan
4 Comments
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…
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28 Jul 2020
By Ronny Allan
3 Comments
Paraneoplastic Syndromes – the NET Effect

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect Series, , , , , , , ,
Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms.  Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios.  I eventually filtered out papers based on the expertise of the authors and the common threads running in each…
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28 May 2020
By Ronny Allan
0 Comments
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Survivorship,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 12th May 2020I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (….you should’ve seen the other guy). Bar the odd mandatory injection, I avoided nurses (….and boxing) for many years after that. But now ……Today is international nurses day. These guys have hit the headlines recently and many of us are dependant on them for ongoing…
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24 May 2020
By Ronny Allan
0 Comments
Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship,
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…
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17 May 2020
By Ronny Allan
0 Comments
Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Survivorship,
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…
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13 Mar 2020
By Ronny Allan
1 Comment
Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship, , ,
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate…
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09 Mar 2020
By Ronny Allan
5 Comments
Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship, , ,
This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article…
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12 Oct 2019
By Ronny Allan
3 Comments
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:  October 2024.  I continue to believe the flu shot is even more important in the era of COVID-19. The flu is an illness that typically spreads in autumn and winter. A major flu outbreak could potentially overwhelm a person who might contract both at once or overlap. In fact, in Dec 2023 after contracting my second infection of COVID-19, I had a back to back regular chest infection needing antibiotics.  OK, I still succumbed to both even after having both shots in that year, but who knows what would have happened without them. Like last year, I…
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21 Nov 2018
By Ronny Allan
10 Comments
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 The points below are awareness and should not be confused with pity parties (I don't do those) 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! 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 No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…
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10 Oct 2018
By Ronny Allan
0 Comments
Neuroendocrine Cancer – Short Update from NANETS 2018

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting.  It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter,…
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08 Oct 2018
By Ronny Allan
5 Comments
Neuroendocrine Cancer – on your bike!

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship, , , ,
There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike").  It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home in 2012, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year.  A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use.  In fact, Chris got a new one out of the…
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30 Jan 2018
By Ronny Allan
1 Comment
I now take food with my medicine!

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds!  However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests.  Here, conversations bypass the weather and focus on being under the weather! I thought…
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15 Jan 2018
By Ronny Allan
11 Comments
Shame on you!

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms.  Probably long overdue.  For the record, I don't have a visible disability, nor do I have access to any special schemes or 'perks' to gain any advantage.  I quite like to walk and don't really care how far it is to the building.  Now and then I do need short notice access to a toilet facility,…
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20 Dec 2017
By Ronny Allan
5 Comments
Neuroendocrine Cancer – surveillance and follow up

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , ,
Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…
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20 Nov 2017
By Ronny Allan
5 Comments
Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier".  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most…
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