Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition for almost 8 years and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine. So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable! Take a break if you need one. Thanks for reading Ronny…
Read More
NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
Read More
NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
Read More
NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
Read More
NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here. Personalised PRRT is highlighted.  Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS.  I've not watched them all yet due to holiday but they are always great!  Click here. PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
Read More
NETwork with Ronny © – Community Newsletter MAY 2017

NETwork with Ronny © – Community Newsletter MAY 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…
Read More
NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in…
Read More
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever…
Read More
Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  OPINION. There's a lot of inaccurate and out of date information out there.  Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda. Myth 1:  All Neuroendocrine Tumours are benign Not true.  By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'.  Sure, some NETs will be benign.  However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.  This has been…
Read More
It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan.  I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications.  There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can't get my head round why metastases from a small intestinal NET managed to get to this area but not others! Distant nodal metastasis treatment…
Read More
Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs, Treatment
I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape. OncLive: Please highlight some of the main points from your…
Read More
Neuroendocrine Cancer: Nodes, Nodules, Lesions

Neuroendocrine Cancer: Nodes, Nodules, Lesions

Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
A fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary's (e.g. lymph nodes, mesentery and others) with liver metastases.  Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck.  In certain NETs, these might be an additional primary (e.g. in the case of Multiple Endocrine Neoplasia (MEN); or they could even be a totally different cancer. The worry with NETs is that the 'little suckers' can sometimes make these surprise appearances given that neuroendocrine cells are everywhere. Cancer doesn't just spread through the blood steam, it can also spread through the lymphatic system. This is a system of thin tubes (vessels) and lymph nodes that run throughout the body in the…
Read More

Keep your light burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that you can pick up where you left off 30 years ago as if it was only yesterday and 'bravado' is not only allowed, it's expected! A week later, I received a very nice Christmas card with a message which included "...... the old light is still burning brightly".  It was a metaphor but something I needed to hear. Neuroendocrine Cancer can damage or take our body parts, cause us pain and discomfort, disrupt our lives through constant treatment and surveillance, giving…
Read More
Palliative Care – it might just save your life

Palliative Care – it might just save your life

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed I had always associated the word 'palliative' with someone who had a terminal disease and this type of care was to make the final days/weeks as comfortable as possible. So it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness that many people survive. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment.…
Read More

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="" align="aligncenter" width="460"] Stiff upper lip[/caption] It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work?  In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in my case........  or was it my stiff upper lip? 20 months prior I had a colonoscopy after a short-term change of stool colour. Nothing…
Read More
WEGO Health Patient Leader Ronny Allan – Living with Neuroendocrine Cancer

WEGO Health Patient Leader Ronny Allan – Living with Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
This is what taking part in the WEGO Awards means to me Background In 2016, I was nominated for 6 awards, got to the final for 2 (Blog and Community) and then won the Best in Show Community award. In 2017, I was nominated for 3 and got to the final in all 3 - unfortunately I did not win any of them due to fierce competition. Here we are in 2018 and I've been nominated for 5 awards and made to the final in the Blog category.  This is not only another great opportunity for me as a blogger and health activist but also a further opportunity for Neuroendocrine Cancer awareness. The winners of the 2018 awards will be announced over the period 26-28 Sep 2018. Check out WEGO's…
Read More

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_6724" align="aligncenter" width="2896"] Medicine![/caption] "yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "we must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500" campaign which fortunately and timely sparked us into gear. As a patient with incurable cancer, life can be tough on the body and mind. However,…
Read More

Exercise and Cancer: Forward is Forward

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6521" align="aligncenter" width="500"] For Cancer patients, it’s not just about how fast, how high, how heavy, how much ............... it’s about DIRECTION.[/caption] One of the very first blog posts I wrote was about exercise. Basically I said it was medicine.  I have not changed that view, I really believe it.  All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their physical condition. Research also indicates that exercise can help. In my blog "Exercise is Medicine", I discussed…
Read More
What you don’t know might kill you

What you don’t know might kill you

Awareness, Treatment
[caption id="attachment_6337" align="aligncenter" width="700"] In Barbados Heaven.  I didn't know I had metastatic cancer but was about to find out on return to UK[/caption] A month before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday.  Both of us were looking forward to a nice break after a hectic start to 2010.  When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, whilst I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', Neuroendocrine Tumours were growing in my small intestine, spreading into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area.  The excess serotonin being released was causing a dense fibrotic retro-peritoneal reaction (desmoplasia)…
Read More
Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_4893" align="aligncenter" width="500"] Graphic courtesy of Ellie McDowell[/caption] There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". 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 public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don't know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post! I don't tend…
Read More
Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_5953" align="alignnone" width="480"] Day 4 of 6 - entering Cumbria from Northumbria[/caption] 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 main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited…
Read More
Don’t worry, I really am OK!

Don’t worry, I really am OK!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6843" align="aligncenter" width="377"] I really am OK![/caption] I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer".  The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'.  For the uninitiated, I'm defining this as "One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence."  That perfectly explains the accompanying graphic!  That definition also covers the two key themes above, talking about it…
Read More
I Can

I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Opinion.  Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". When I wrote my blog "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my article "Neuroendocrine Cancer – is normally slow growing BUT ….." an attempt to invoke some sort of 'pity party'. Neither of those things are my style. Despite the metaphoric angle to the post…
Read More

100,000 blog views – thank you!

Living with Neuroendocrine Cancer
NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook.  Like my page for even more news. Disclaimer My Diagnosis and Treatment History Most Popular Posts
Read More
I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
Read More

Patient power – use it!

Inspiration, Patient Advocacy
[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors.  However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication.  The blog then commented on a number of tips for better doctor-patient relationship and communication.  These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…
Read More
Sometimes you just need to climb that hill!

Sometimes you just need to climb that hill!

Inspiration, Living with Neuroendocrine Cancer
It was wet, windy and very cold and that was at the bottom of the hill I'm looking up at. It wasn't a terribly big hill but I knew it would need considerable effort and perhaps some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we almost simultaneously said "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So we went up the hill and it hurt.  Up there, it was wetter, windier and colder! However, the 'euphoric high' was worth it.  It was like medicine healing the body and mind. [caption id="attachment_4990" align="aligncenter" width="500"] The 'euphoric high' is kicking in![/caption] Of course, the 'hill' is also a metaphor which might…
Read More
“Trust me, I’m a Doctor”

“Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
One of the most frequent posts on forums is about the Patient-Doctor relationship (or occasionally a lack of it.....).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever. However, people with less common conditions can perhaps be more difficult to satisfy.  A 'generalist' doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at secondary care level, certain less common conditions still need dedicated specialists and these services…
Read More
Neuroendocrine Cancer – Incurable is not untreatable

Neuroendocrine Cancer – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist said " ... perhaps just months".  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 Chris heard it all and I was refocused.  "OK Doc - let's go" I said.  Always take someone with you to take notes at important meetings with Oncologists! I continue to see…
Read More
Alcohol – the NET Effect

Alcohol – the NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer
Opinion. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then.  When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It wasn't until I studied a bit more about my disease and the consequences of my treatment, that I decided I would cut right down.  This turned out to be a pretty drastic cut as I can count the…
Read More
Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living.  Rock and Roll!

Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living. Rock and Roll!

Awareness, Inspiration, Living with Neuroendocrine Cancer
  [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] I recently blogged about a well-known BBC political reporter who has a 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 had I published the Nick Robinson article, I was alerted to the broadcasting of…
Read More
Neuroendocrine Cancer – my initial surgery – a patient experience (part 2)

Neuroendocrine Cancer – my initial surgery – a patient experience (part 2)

Technical NETs
  [caption id="attachment_8022" align="aligncenter" width="2048"] Surgeon Mr Neil Pearce and Interventional Radiologist Dr Brian Stedman[/caption] The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce, I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.  It was also so much easier to get to the toilet, a much frequented…
Read More
Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
A couple of years ago, I received a request from a reader asking if I would write an article about all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs. Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task.  I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it's an almost impossible task for a wee Scottish guy with less common disease :-)  I also started…
Read More
Your Money or Your Life

Your Money or Your Life

Inspiration, Survivorship, Treatment
As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients.  I've been following her story for almost 2 years and she has really inspired me.  The title of this article is based on the title of a TV programme about her and her campaign to gain access to new drugs.  I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly.   RIP…
Read More

Not all Cancer is simple

General
[caption id="attachment_4135" align="alignleft" width="670"] Not all Cancer is simple[/caption] So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below).  Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with other conditions often with debilitating symptoms. Once diagnosed, surgery (if it's possible) is just one of a number of treatment options…
Read More
Let’s attack Cancer metaphors

Let’s attack Cancer metaphors

General
In the past 24 months, I've read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms.  The authors say that perhaps this is not the best language to use.  One author used the term 'violence' to describe these type of metaphors.  A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use.  I don't like Cancer - it attacked me, it attacked my family, it attacked others I know, it has killed people I know....... it has killed millions of people and changed many lives. I'm 'fighting' Cancer.  I'm in a 'battle' with Cancer. But I don't mean all that…
Read More

Screw that diagnosis and get on with it!

General
  [caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…
Read More
I look well but you should see my insides

I look well but you should see my insides

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

Sorry, I’m not in service

General
Featured by Macmillan Cancer - check out this link. Featured by Cancer Knowledge Network - check out this link. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer.  I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less. I guess the image of 'invincibility' was important to me at that time.  It was part of my personal…
Read More
I may be stable (..ish) but I still need support and surveillance

I may be stable (..ish) but I still need support and surveillance

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
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 of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in…
Read More
Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there was a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  "Please flush after use" - erm...yes sure but actually -…
Read More

The C Word

General
'The C Word' or 'The Big C' - the subject which must not be discussed.  Or is this now an out of date phrase?  I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word).  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission. We now have much better tools to discover and treat cancer. Moreover, because we are increasingly open about cancer, there is more awareness. According to Cancer Research UK, as we all live longer, more than one…
Read More
No Fear

No Fear

Inspiration, Survivorship
It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 24 hour urine (5HIAA) and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.  Happy days :-) I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary.  Why? Because testing is one thing that's going to keep me alive for as long as possible.  If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough.  Even in the event of 'not so good news', I still see that as a positive because it…
Read More
Do you suffer from NET Brain?

Do you suffer from NET Brain?

Awareness, Humour
[caption id="attachment_2728" align="aligncenter" width="300"] This isn't me by the way![/caption] The acronym 'NET' (NeuroEndocrine Tumour) can be advantageous to NET advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by 'surfers'. NET just also happens to be a common truncation of the word 'Internet' or 'Network'.  The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look.  Bingo - we have spread a little bit of awareness! However, these unintended awareness opportunities are not confined to 'NET'.  According to my blog statistics, other than my name, the most common search phrase which leads to my blog is "No Fear" - the title of one of two blogs I wrote on so-called 'scanxiety'.  However, I suspect many…
Read More
Colonoscopy Comedy

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer
  [caption id="attachment_2643" align="aligncenter" width="500"] No more prep please![/caption] Last year I wrote a series of blogs on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time!  My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer…
Read More

Intelligent patients – just what the doctor didn’t order

General
  [caption id="attachment_5440" align="aligncenter" width="309"] This blog was featured by Carcinoid Cancer Foundation[/caption]   I'm extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation's blog site! I've been following these guys since I was diagnosed.  They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet. The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit organization chartered by the State of New York for the purpose of encouraging and supporting research and education…
Read More
The Mother of all Surgeries

The Mother of all Surgeries

Treatment
[caption id="attachment_2338" align="alignnone" width="500"] Surgery[/caption] My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I've…
Read More

End of the year but not end of the mission

General
[caption id="attachment_2374" align="aligncenter" width="600"] Ronny & Chris Allan - festive sweaters :-)[/caption] Hope you all had a nice festive break?  Chris and I had 3 separate dinners making sure we made the most of our extended family base.  We decided to join in the Christmas jumper fashion statement which seems to be vogue this year - thus the picture!  At least we got to wear them 3 times! Now that busy period is over, I've had the chance to reflect on the last 8 months of blogging and look forward to my plans for 2015. I created this blog site on 29 Apr 2014 mainly to document an 84 mile charity hike across Hadrian's Wall - a World Heritage site in the North of England near the border with Scotland.  I was just a 'learner'…
Read More
Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs
I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer).  Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient.  For me, this can be attributed to a number of…
Read More
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 experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk 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, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
Read More

Met an old friend today; his name is Gym

General
I think I first met Gym at school in the sixties - we normally met on a weekly basis. We were reacquainted when I joined the army and hooked up more frequently! It was there I met some of Gym's friends, known as PTIs (Physical Training Instructors). Their opening line was normally "Ten times round my large bronze chest...... GO! " and then we would proceed with the 'beasting'.  I suspect I might now be prodded by the PTIs on my facebook page - there are one or two out there :-) I've always been a fairly fit guy but over time my fitness had faded.  I'm to blame entirely for this but I suppose it hasn't been helped by a diagnosis of metastatic Neuroendocrine Cancer.  However, I'm now turning this negative…
Read More

Am I at fighting weight?

General
I recently blogged about my boxing experience in post: http://wp.me/p4AplF-r7  In those days I was just a wee skinny 16 year old guy! I think I was in the Bantamweight category, somewhere between 8 and 9 stone (50 - 57 kg). Although I gained some weight after years of service in the military, I didn't really 'bulk out' in the wrong places until I left the military aged 45. Even then it wasn't what you would call overweight or obese. I joined a gym, determined to maintain some form of fitness.  I sacked it due to pressures of work but then joined a few years later for another go. However, work and associated commuting took over again and I withdrew once more. In those days, I didn't really weigh myself and…
Read More

Glass half full or half empty?

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 in the last 5 years since diagnosis. However, I believe to continuously be in 'half empty mode' can have a…
Read More

Four years on

General
On Saturday, I glanced at the calendar on my phone and recognised the date as some sort of anniversary - 26 July.  It was exactly 4 years to the day I received my diagnosis of Metastatic Neuroendocrine Cancer. It all began 2 months previously with a routine asthma clinic appointment when I mentioned to the Nurse Practitioner that I thought I'd lost half a stone in weight.  She immediately said "did you mean to lose the weight" and the answer was "no" on the basis that I just simply thought I was heavier.  As a precaution she sent me for a set of blood tests and then a retest.  I later marched into the GP's office (having been asked to come to the surgery) to hear the GP say "I…
Read More
Hadrian’s Wall Day 6 – Mission Complete!

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer
  [caption id="attachment_1144" align="alignnone" width="2560"] Sunset over the Solway Firth (Scotland in the distance)[/caption] The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway.  We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room.  It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born. Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it's flat but the first half is a wonderful…
Read More
My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship
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 nearly 8 years ago but I have a lot of people to thank for some excellent progress.  My son & daughter's families have all been there for me and although my 4 grandsons don't quite understand the situation, their presence in my life is a…
Read More