Living with Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer

06Sep 2023 by Ronny Allan 17 Comments

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine Cancer

Glen Etive Scotland in 2018 [caption id="attachment_2911" align="alignleft" width="300"] Mt Jacinto near Palm Springs[/caption] After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', holidays were put on the back burner, there were too many problems and too many risks - not least of which was the lack of overseas insurance cover for my condition. After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away. We stuck to Europe over the period 2012-2014. However, in 2015, I was getting more confident and managed to get back to one of my all-time favourite places - California. A total…

05Sep 2023 by Ronny Allan 10 Comments

Update from Ronny Allan: No evidence of progressive disease at any site

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time. One of the disadvantages of 'incurable but treatable' is that Quality of Life (QoL) can in many cases be compromised due to the consequences…

30Aug 2023 by Ronny Allan 16 Comments

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine Cancer

Most people have probably heard of the saying "is your glass half empty or half full". If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I'm only human and I've been in some dark places since diagnosis. However, I believe to continuously be in 'half empty mode' can have a detrimental effect on your…

26Aug 2023 by Ronny Allan 16 Comments

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 controversial. I didn't really have much time to think them through properly at that point in time. However, over time, I started to realise the important of some of these…

17Jul 2023 by Ronny Allan 2 Comments

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny AllanWhat is a NET Specialist?"What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor who is not only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and…

03Jun 2023 by Ronny Allan 1 Comment

Getting back in the saddle

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny

The "getting back in the saddle" metaphorI 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, clearly new thoughts about how quickly I could get 'back into the saddle' were on my mind. In fact, one of the first questions I asked my surgeon was "how much time off do I need before I can drive and also go to work". …

01May 2023 by Ronny Allan 1 Comment

Summary of April 2023 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters

Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary of my website RonnyAllan.NET in April 2023. A challenging month given other commitments and a rib injury sustained on holiday but pleased with my output. I hope there is something you missed and can catch up here. As usual, share this with anyone you think may benefit. Many thanks for reading. Oh yes, it's the great pretender - a new entry A new RonnyAllan.NET awareness campaign and it deserves to be shared to the world (oh yes!) as it may lead to a diagnosis. If this floats your boat - Click here or on the picture. [caption id="attachment_41518" align="aligncenter" width="640"] Click picture to read more[/caption]…

16Apr 2023 by Ronny Allan 3 Comments

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. Other surgeries followed. In 2023, despite many side effects of treatment since 2010, he still looks like a picture of health, ......... but you should see his insides! [caption id="attachment_41830" align="aligncenter" width="640"]…

10Apr 2023 by Ronny Allan No Comments

Semaglutide (e.g. Ozempic) For adults with type 2 diabetes – The NET Effect

Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

BackgroundThis subject of semaglutide (e.g. Ozempic) is appearing regularly in my private Facebook group, and I can see there might be some confusion out there. But first, I wanted to state that this post is not about me saying semaglutide (or whatever brand names are included in this post) is something you should be taking or not. That is the responsibility of your doctors in conjunction with you the patient. Nor is this post to be considered in any way a promotion for the drug or the manufacturer, I have no relationship or communications with the manufacturer, nor am I taking this drug. I merely wanted to point out some facts about this drug, mainly from the manufacturer's website and hopefully provide some context for those who may be confused. That said, clearly…

05Mar 2023 by Ronny Allan No Comments

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 claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into…

03Jan 2023 by Ronny Allan 2 Comments

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

ReviewIn 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 but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

31Dec 2022 by Ronny Allan 4 Comments

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…

23Dec 2022 by Ronny Allan 2 Comments

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…

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin 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 for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

23Oct 2022 by Ronny Allan No Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

BackgroundI wanted to focus on two terms "lesion" and "cyst" given these are mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told (or read before an appointment) this was found during diagnostic scans. Sometimes these are described by doctors as "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (not cancer) or malignant (cancer)". The majority of liver lesions are noncancerous (benign) and will not be related to Neuroendocrine Cancer. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis. This is particularly important if these lesions are in addition to known cancerous ones included with…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Musings from a metastatic NET patient of 12 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 hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

12Sep 2022 by Ronny Allan No Comments

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

BackgroundA focus on the issue of Lung nodules given I see these mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told this was found during diagnostic scans. Sometimes a lung nodule is also called a ‘pulmonary’ nodule and the two phrases mean the same thing.A lung nodule is an abnormal growth that forms in a lung. You may have one nodule on the lung or several nodules. Nodules may develop in one lung or both. Most lung nodules are benign (not cancerous). Only rarely, lung nodules are a sign of cancer in the lung. They can show up on imaging scans like X-rays or CT scans and are only found when doctors are checking for something…

05Sep 2022 by Ronny Allan 2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many.I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor. I was inferring that we shouldn't unnecessary restrict our lives when something is low risk, particularly when something we are told is a 'no no' has been said out of context and…

24Jul 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more worrying situation in my opinion. Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…

12Jul 2022 by Ronny Allan 2 Comments

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 this day, we (mostly me) remain slightly paranoid about protecting ourselves. e.g. I have maintained the habit of not touching door handles with my bare hands to this day. My…

12Jun 2022 by Ronny Allan 7 Comments

Living with Cancer: Don’t cross the bridge until you come to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results. I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get. Has it grown, has it shrunk? What if ....... Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling. How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired. For example, I try not to be concerned about results over which I have little control once the…

04Jun 2022 by Ronny Allan 5 Comments

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 one…

08Apr 2022 by Ronny Allan 1 Comment

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 announcementI 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 too late, I'm metastatic,…

03Jan 2022 by Ronny Allan No Comments

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 outlets for my blog posts. Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…

27Sep 2021 by Ronny Allan 3 Comments

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy

Opinion Post Nothing in Neuroendocrine Cancer is ever black or white. One great example is diet and nutrition. I've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group. The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer". The answer is almost impossible. Here are a few of the reasons why these things get muddled: 1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions…

09Sep 2021 by Ronny Allan 6 Comments

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny

Updated and reviewed 10th June 2022 - UK travel insuranceOPINION.FOR 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, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company. I do this to try to help others. I first started supporting this issue via Macmillan in…

08Aug 2021 by Ronny Allan 1 Comment

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

In my patient support group of 8000+, 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 quite a while leading up to the diagnosis. That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…

04Aug 2021 by Ronny Allan 8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Caption: Talking to Ipsen 2016 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 talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust. As usual, I was only too happy to help. …

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

31May 2021 by Ronny Allan 4 Comments

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…

13Feb 2021 by Ronny Allan No Comments

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 was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving…

17Dec 2020 by Ronny Allan 4 Comments

The other Big C can be dangerous too

Living with Neuroendocrine Cancer

I managed to avoid a C-19 infection all the way through several lockdowns, and I deployed a rigorous protection regime throughout. Ditto for Chris. I have a chest infection history, so for me, it was a no-brainer to take advantage of the vaccines on offer.July 2022 - boom! It slipped through the net (no pun). I have to say it was not an enjoyable experience and I would not like to repeat it. Today I received my 4th vaccine and am very happy to do so. If it offers any protection from serious illness, I'll gladly take it. Read my post on that here or click the photo below.[caption id="attachment_33846" align="aligncenter" width="640"] Click on the photo to read more[/caption]My covid experience is ongoing as a CT scan picked up ground…

01Dec 2020 by Ronny Allan 15 Comments

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 with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 2 million: whilst accumulating around 20,000 followers across all my social media…

05Sep 2020 by Ronny Allan No Comments

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine Cancer

One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), even taller than my garden fence (more difficult). Of course, I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it. Nonetheless, I still felt a remarkably close association with the outcome! It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant and forest pictures and there is a reason flowers proved to be more popular than my other posts. Flowers, particularly with vibrant colour, stimulate our happiness hormones, including serotonin. I…

19Jul 2020 by Ronny Allan No Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the list of known symptoms directly attributed to any of the syndromes except for the group of catecholamine secreting tumours known as Pheochromocytoma and Paraganglioma I decided to extend it to…

13Jul 2020 by Ronny Allan 4 Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 12 of my Living under COVID-19 series. A story of surviving, cycling, Scottish holiday memories including the 'Fairy Pools'7th JuneNational Cancer Survivors Day was on 7th June. It's a celebration of life and if you're reading this, you're surviving. Share and let people know you're still here. Or just tell me below!I'm still here!#NationalCancerSurvivorsDayA wee story to finish off #NationalCancerSurvivorsDay22 miles of cycling today to celebrate life. A story about woods, animals, a long straight road with an interesting history and a bombing range.We had already cycled and walked parts of this route but our new e-bikes mean we can go further in a shorter space of time - i.e. we…

26Jun 2020 by Ronny Allan No Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 11 of my Living under COVID-19 series. A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk .... if you missed it it's here. We have another 3 or 4 days of hot weather so it's bikes again soon. Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian's Wall on 31st May 2014. We were so happy and relieved to finish - went straight to the only pub in the village of Bowness for a pint of well earned beer Lead picture is the view we had towards Scotland where we stayed that…

19Jun 2020 by Ronny Allan No Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Living with Neuroendocrine Cancer

Episode 10 of my Living under COVID-19 series. A story of the 'Wall', Swans, Dundee and New Forest History26th May 20206 years ago today, Chris and I set off an a 6 day hike across the 2000 year old world heritage site of Hadrian's Wall in northern England. It was an experience we'll never forget, not just for the long 84 mile slog but the natural beauty, the interesting places we visited and the people we met. We were raising funds for the local NET guys PLANETS Charity - co-founded by my surgeon (Neil Pearce) and interventional radiologist (Brian Stedman) and brilliantly ran by our friend and NET Patient Layla Stephen. I think we raised just over £4000 on that walk, more than expected. Plus it was the only reason at the time…

09Jun 2020 by Ronny Allan 6 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 9 of my Living under COVID-19 series. A story of cream tea, peaks, blue sky and more peaks! 19th May 2020 [caption id="attachment_18552" align="aligncenter" width="640"] In Brockenhurst, a New Forest town where animals mix freely with humans![/caption] Figure of eight bike ride yesterday around the outskirts of my town. 9 miles (still feeling the 23 miles from Saturday!). No photos, just a quick spin session. However, one of those Facebook memories came up from last year where we visited a nice town called Brockenhurst in the New Forest. Lovely little place smack bang in the middle of the National Park. The reason it caught my eye was a picture…

13May 2020 by Ronny Allan 2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 5) – A story of greenery, sun, adventure and Irrfan

Living with Neuroendocrine Cancer

This is the fifth part of a new series entitled: Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions – A story of greenery, sun, adventure and Irrfan 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…

11May 2020 by Ronny Allan 2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the fourth 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…

04May 2020 by Ronny Allan 1 Comment

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_17894" align="aligncenter" width="623"] Aged 18 - that's me on the left. My hair is currently as long as it's been since then![/caption]This is the third 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…

25Apr 2020 by Ronny Allan No Comments

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

Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

23Apr 2020 by Ronny Allan 2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 1) – out of isolation

Living with Neuroendocrine Cancer

It's been over a week since I came out of my self imposed isolation of 14 days after developing "a new and continuous cough". Although I'm much better now, nothing has really changed in that I'm sticking to my own property pretty much all of the time. In case you missed my 14 day self isolation diary - I compiled it here - click here to read.Since coming out of isolation, we've been for a couple of government mandated walks from our house (max 1 hour) - it's fairly easy to find empty streets and lanes around here, so we're quite lucky. I did notice people keeping a wide berth of each other - very sensible.In UK, we're worried about our Prime Minister, no nation likes their leader being ill…

06Feb 2020 by Ronny Allan 9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UK As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment, and my follow up and…

04Sep 2019 by Ronny Allan 2 Comments

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer

Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many days out). [caption id="attachment_14267" align="aligncenter" width="960"] Motivation is often difficult[/caption]ExerciseEverywhere you look, there are experts telling us that exercise is good…

21Jul 2019 by Ronny Allan No Comments

The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer. If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.I was also interested to read a number of articles about various aspects of this modern phenomenon. Firstly, in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual. Not just patients who get fooled by these claims then?Much of the misinformation arrives via Facebook, and YouTube, two of the most commonly used social media tools. This article suggests a shockingly large majority of…

08Jun 2019 by Ronny Allan No Comments

New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

Clinical Trials and Research, Living with Neuroendocrine Cancer

Updated 17th March 2023 When I wrote about this new PET in June 2019, it was for interest only, but I curiously noted the existence of "NET" in the list of 28 cancers. It is designed to compete with FDG PET. The study comes from a joint China/Singapore initiative. This update now confirms it could be more efficient than FDG for those types of cancer where FDG is the optimum imaging. Headline "A new radiotracer, 68Ga-FAP-2286, has been found to be more effective than the most commonly used nuclear medicine cancer imaging radiotracer, 18F-FDG. In a study published in the March issue of The Journal of Nuclear Medicine, 68Ga-FAP-2286 detected 100 percent of primary tumors across multiple cancer types as compared to 18F-FDG, which identified only 80 percent. 68Ga-FAP-2286 was also more effective in detecting lymph…

18Apr 2019 by Ronny Allan 6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight,…

Category: Living with Neuroendocrine Cancer