Inspiration Archives

27 Jun 2024

0 Comments

Sometimes you gotta climb that hill …….. twice!

Inspiration, Patient AdvocacyCancer survivor, Survivorship

Climbing hills are tough, but within my limits, I make the effort and always enjoy the end product, the views and the feeling of accomplishment. The lead picture is a before and after, 2018 and June 2024. Some things are different including dress choice, the weather and my hair colour! Believe it or not, at 68 years old, I'm fitter on the 2024 version! In some ways, my diagnosis and subsequent tests and checks were much easier than the treatment, particularly the surgeries. My first one was really tough with an 18 day stay and at times, I felt quite…

18 Jun 2024

By Ronny Allan

17 Comments

Let’s talk about living with NETs

Inspiration, SurvivorshipCarcinoid tumour, Incurable cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Opinion. Over the years, I've seen questions on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question, but I believe there are times and places for it and that a…

17 Jun 2024

By Ronny Allan

23 Comments

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Ga68 PET/CT, Incurable cancer, Lanreotide, Low Grade NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Palliative care, Palliative treatment, Prognosis, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Terminal cancer

When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife…

03 Jun 2024

By Ronny Allan

8 Comments

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine CancerCarcinoid syndrome, Hypothyroidism, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Thyroid

In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…

02 Jun 2024

By Ronny Allan

0 Comments

Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Inspiration, Patient Advocacy, SurvivorshipPancreatic cancer, Pancreatic NET (PanNET), Whipple procedure

Great story from Ryan who was diagnosed with stage IV Pancreatic NET in 2022. Ryan is a wrestler and a wrestler coach. He's therefore used to facing tough situations. His podcast sponsor has used some fine words which I will leave you to read. I see many patients facing up to these situatons on a day to day basis but I think it's great that Ryan is telling his story to help others. Ryan is married with 4 children, so, like many of my readers, he has a lot to live for. I wish him the very best as he…

20 May 2024

By Ronny Allan

4 Comments

Other people get cancer, not me

Awareness, Inspiration, Patient AdvocacyBiopsy, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.…

16 May 2024

By Ronny Allan

19 Comments

No Fear or Know Fear?

Inspiration, SurvivorshipAnxiety, Neuroendocrine cancer, Octreotide scan, Scanxiety, Surgery

Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all different. The article drew in a lot of non-NET people who were attracted by the original title. It did spread a little bit of awareness but I guess the dozens of bunjee jumpers and other dangerous sports types quickly left when they found out it wasn't about either the famous sports clothing shop or jumping off large structures with NO FEAR! The Original ArticleIt's that time again, every 6 months I need some checks. I've done…

04 May 2024

By Ronny Allan

3 Comments

“You’re from Dundee – you must like fighting”

Humour, InspirationAdvanced neuroendocrine cancer

Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight!Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner. However, I believe one of those attributes is accurate. I was once 'volunteered' for boxing because my home town was Dundee! Read on...Dundee was put on the boxing map in the late fifties/early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang…

29 Apr 2024

By Ronny Allan

6 Comments

Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

Awareness, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyCancer survivor, Survivorship

On 29th April 2014, I release my first post entitled "What's it all about" i.e. why on earth am I writing a blog! It was simple in those days, I just wanted your money :-) I was fundraising as many diagnosed cancer patients and their supporters frequently do. In my own case, I was fundraising for my local NET charity who were raising money to support NET patients in various ways. Their latest challenge at that time was getting access to intraoperatrive radiotherapy machine (IORT), something that could help 'blast' small cells and tumours in places near to the 'operative…

31 Mar 2024

By Ronny Allan

0 Comments

From Whipple to Waikiki by Jerry Chezick. Surf’s up!

InspirationNeuroendocrine tumour (NET), Pancreatic NET (PanNET), Survivorship, Whipple procedure

An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed to let me post here. Honest, open and inspiring stuff"Finally I realized, I had to become the World Expert on MY Body"I've recently passed the 2-year anniversary of my Whipple.About 9 months before, I experienced a total knee replacement and figured, if I could endure that…

26 Mar 2024

By Ronny Allan

2 Comments

Tick off that bucket list

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer

In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian's Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on the west coast. It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle. As someone interested in history,…

25 Mar 2024

By Ronny Allan

3 Comments

Four years on

Awareness, InspirationAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor

Edit 2024: One of my early posts was entitled "Four years on". I guess I was starting to recognise 'cancerversaries', perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as…

19 Mar 2024

By Ronny Allan

2 Comments

So what next?

Inspiration, Survivorship, Travel with RonnyAdvanced neuroendocrine cancer, Survivor

See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint! Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet. That's not…

04 Mar 2024

By Ronny Allan

0 Comments

Living with Cancer? Take a break if you need one

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer related fatigue, Depression, Incurable cancer

It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some…

01 Feb 2024

By Ronny Allan

4 Comments

Things not to say to someone with cancer

Inspiration, SurvivorshipCancer, Cancer survivor, Invisible illness

This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere! Personally, I don't tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never…

25 Jan 2024

By Ronny Allan

28 Comments

Scanxiety – I just don’t get it!

Inspiration, SurvivorshipNeuroendocrine cancer, Quality of LIfe (QoL), Scan, Scanxiety

OPINION ...... but read the post before you form your own based on the post title The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting…

10 Nov 2023

By Ronny Allan

10 Comments

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Biopsy, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Hormones, Neuroendocrine cancer, Octreotide, Octreotide soak, Somatostatin analogues, Surgery

1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …

09 Nov 2023

By Ronny Allan

6 Comments

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, InspirationAdvanced neuroendocrine cancer, Carcinoid syndrome, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Small intestine NET (SI NET)

D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…

06 Nov 2023

By Ronny Allan

5 Comments

Neuroendocrine Cancer: Make time for your wellness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer

I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during cancer:You could try to surround yourself with positive people and positive energy. Seek support from your friends, family, or a support group who can listen to you, encourage you, and even make you laugh. You can also read inspirational books, listen to uplifting music, or…

30 Oct 2023

By Ronny Allan

1 Comment

Piss off cancer – I’m 68

Awareness, InspirationAdvanced neuroendocrine cancer, Cancerversary, Prognosis

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…

18 Oct 2023

By Ronny Allan

2 Comments

Exercise – it’s a free prescription

Inspiration, Patient AdvocacyCancer related fatigue, Survivorship

Exercise is a free prescription. Clearly, I need to be careful with that statement given my aversion for cancer myths but it was once prescribed to me to get me through an awful period in 2013. The vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!). In fact, my blog was actually created to document my return to fitness and…

17 Oct 2023

By Ronny Allan

4 Comments

Blogging is a full-time job – and I walked right into it!

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipNeuroendocrine cancer

My very first blog post - 'remastered' in 2023!The original post as I published it on 29 Apr 2014This is a new skill so bear with me, please! The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris.The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway.The walk is for two purposes:1. To raise awareness of Neuroendocrine Cancer2. To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours).As a lead-up to the actual walk itself, I'll…

12 Oct 2023

By Ronny Allan

10 Comments

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Inspiration, SurvivorshipLanreotide, NHS, Surgery

I 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 both boxing and nurses for many years after that. But now ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'. That nurse was professional, thorough and she clearly went the extra mile…

07 Oct 2023

By Ronny Allan

3 Comments

Shrek and Princess Fiona

Humour, Inspiration, SurvivorshipCancer survivor

I was looking through some old photographs and came across this one I thought you guys might like. It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time. This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex…

06 Oct 2023

By Ronny Allan

1 Comment

Just got (a) shot in the buttocks

Humour, Inspiration, Patient Advocacy, TreatmentCarcinoid syndrome, Flushing, Lanreotide, Octreotide, Somatostatin analogues, Surgery

I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!). On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan'…

04 Oct 2023

By Ronny Allan

7 Comments

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with RonnyNeuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…

06 Sep 2023

By Ronny Allan

17 Comments

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine CancerLanreotide, Neuroendocrine cancer, Quality of LIfe (QoL), Side effect, Surgery

Glen Etive Scotland in 2018 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,…

04 Sep 2023

By Ronny Allan

12 Comments

Exercise is Medicine

Inspiration, Survivorship, Travel with RonnyCarcinoid syndrome, Hormones, Lanreotide, Neuroendocrine cancer

Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I'm coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).…

03 Sep 2023

By Ronny Allan

4 Comments

Passive patient or active advocate?

Awareness, Inspiration, SurvivorshipAdvanced neuroendocrine cancer

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 -…

30 Aug 2023

By Ronny Allan

16 Comments

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

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…

26 Aug 2023

By Ronny Allan

16 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diet, Hormones, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL)

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…

05 Aug 2023

By Ronny Allan

3 Comments

Still here, just reshaped

InspirationDebulking surgery, Diagnosis, Small intestine NET (SI NET), Surgery

The tallest tree in Wales had been damaged by a storm and was supposed to be cut down, but chainsaw artist Simon O'Rourke - Tree Carving found a better solution to symbolize the tree's last attempt to reach the sky. I suspect you could also call Simon a tree surgeon. I was reshaped too! In one of my diagnostic stories, I said that my body was slowly dying and that was just how it felt having been diagnosed with something that had not made some grand announcement. It slowly just crept into my life, occasionally giving small clues that it…

26 Jul 2023

By Ronny Allan

4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

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,…

24 Jul 2023

By Ronny Allan

2 Comments

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

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, NET syndromes, Neuroendocrine tumour (NET)

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…

10 Jun 2023

By Ronny Allan

6 Comments

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

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor

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…

03 Jun 2023

By Ronny Allan

1 Comment

Getting back in the saddle

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

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, clearly new thoughts about how quickly I could get 'back into the saddle'…

09 Mar 2023

By Ronny Allan

1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, InspirationAdvanced neuroendocrine cancer, Cancer of unknown primary (CUP), Cancer research, Differentiation, Poorly differentiated, Well differentiated

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…

19 Feb 2023

By Ronny Allan

6 Comments

Sometimes I have to climb hills for the mental challenge

InspirationAdvanced neuroendocrine cancer

Facing cancer tests both the mind and the body. Hill climbing—literal and metaphorical—captures that dual challenge perfectly. When I was diagnosed with Grade 2 metastatic Neuroendocrine Cancer in 2010, it came as a shock. I didn’t feel unwell enough to imagine I had stage IV disease. At first, I simply carried on working, assuming it was “something and nothing” and that normality would soon return. Over time, I learned that optimism and realism don’t always align, and I eventually settled somewhere between the two, adjusting my route as I went. My journey rose and fell in ways that felt very…

03 Jan 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, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

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…

31 Dec 2022

By Ronny Allan

4 Comments

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with RonnyCancer survivor, Survivorship

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…

23 Dec 2022

By Ronny Allan

2 Comments

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with RonnyCancer survivor, Survivorship

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…

08 Dec 2022

By Ronny Allan

0 Comments

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

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…

25 Nov 2022

By Ronny Allan

0 Comments

The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

Awareness, InspirationPancreatic NET (PanNET)

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson - Neuroendocrine Cancer I have been following Wilko's cancer story since December 2015 (and what a story it is) Read more by clicking here. Charlie Chan (left) convinced Wilko to get his diagnosis checked, Emmanuel Huguet (right) removed his huge tumour in Cambridge. Two videos below. Wilko is mainly a guitar player but he also wrote songs and sings too. Video 1 is 2006 when he was part of Dr Feelgood. Boom Boom. Video 2 was made with Roger Dawltry (The Who) for the Going…

23 Nov 2022

By Ronny Allan

6 Comments

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

Awareness, Inspiration, Living with Neuroendocrine CancerMisdiagnosis, Neuroendocrine cancer, Pancreatic cancer, Surgery

BREAKING NEWS I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary. However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner…

10 Oct 2022

By Ronny Allan

0 Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Cancer surveillance, Epidemiology, No evidence of disease (NED), Prognosis

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…

28 Sep 2022

By Ronny Allan

1 Comment

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

Inspiration, Patient Advocacy, SurvivorshipAnxiety, Scanxiety

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…

10 Sep 2022

By Ronny Allan

2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, InspirationMEN1 syndrome, MEN2A syndrome, MEN2B syndrome, Multiple Endocrine Neoplasia (MEN), Neuroblastoma, Paraganglioma

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England. An…

05 Aug 2022

By Ronny Allan

0 Comments

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

Clinical Trials and Research, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carboplatin, Chemotherapy, Clinical trial, Etoposide, Immunotherapy, Ipilimumab (Yervoy), Metastatic Neuroendocrine Cancer, Nivolumab (Opdivo)

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…

26 Jul 2022

By Ronny Allan

14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

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,…

04 Jun 2022

By Ronny Allan

5 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancer surveillance, Cancer survivor

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…

Category: Inspiration