Quality of LIfe (QoL) - Ronny Allan - Living with Neuroendocrine Cancer

25Aug 2016 by Ronny Allan 5 Comments

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see). Most NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades…

24Aug 2016 by Ronny Allan 8 Comments

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, I've no intention of…

02Aug 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

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

reviewed and updated 12th Feb 2022Background.Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (I listed the other parts below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another.I like to focus on why such things might have an effect - patients can then experiment and see what works for them. Sometimes very few changes are required and settling on a diet that works for you is the optimum solution. p.s. Not everyone has…

27Jul 2016 by Ronny Allan 6 Comments

Exercise and Cancer: Forward is Forward

Inspiration

One of the very first blog posts I wrote was about exercise. Basically I said it was like medicine and I have not changed that view much. Exercise improves mental health by reducing anxiety, depression, and negative mood but it's also known to help improve self-esteem and cognitive function. You will not find a single healthcare institution that doesn't recommend exercise in any shape of form. 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…

24Jun 2016 by Ronny Allan 14 Comments

What you don’t know might kill you

Awareness, Treatment

[caption id="attachment_16224" align="aligncenter" width="640"] Barbados heaven but I was oblivious to the fact that cancer was trying to kill me[/caption] A few weeks 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, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area. I also had…

09Jun 2016 by Ronny Allan 17 Comments

Let’s talk about living with NETs

Inspiration, Survivorship

Snoopy has a point Opinion. There's a frequently asked question 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 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…

07Jun 2016 by Ronny Allan 7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

[caption id="attachment_6092" align="alignnone" width="500"] that's me in the middle[/caption] When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice NET patient, I found out my 5-year survival rate was only 38%. It looked like a credible site but I now…

28May 2016 by Ronny Allan 8 Comments

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer

[gallery type="square" ids="16946,16947,16934,16935,16936,16937,16938,16939,16940,16941,16942,16943,16944,16945"]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 for signs of some stability.I was getting into some old habits…

09May 2016 by Ronny Allan 5 Comments

Neuroendocrine Cancer: 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". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. When I wrote my blog post "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 post "Neuroendocrine Cancer –…

31Mar 2016 by Ronny Allan 20 Comments

Telotristat Ethyl (XERMELO®) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Treatment

What is Telotristat Ethyl?Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® 4th April 2022 updateSERB is pleased to announce it has acquired the rights from Ipsen to commercialize Xermelo® (telotristat ethyl) in Europe and other countries outside the US and Japan. Xermelo® will be commercially available from SERB outside the US and Japan starting in July 2022. The announcement appears to infer that SERB are working with BTG Specialty Pharmaceuticals to complete this task. (SERB…

21Mar 2016 by Ronny Allan 15 Comments

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…

17Mar 2016 by Ronny Allan 10 Comments

Dear Doctors – There’s no such thing as a ‘good’ cancer!

Awareness

At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings. However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET). I can't remember much of the conversation but I vividly remember him indicating that of all the issues out there to get, this was one of the better ones. He was using a meter analogy action with his hands swinging towards the 'good' reading! I hadn't gone there that day to receive a cancer diagnosis but he was clearly trying to put me at ease and I'm sure it was with the best…

18Feb 2016 by Ronny Allan 12 Comments

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…

15Feb 2016 by Ronny Allan 6 Comments

Sometimes you just gotta climb that hill!

Inspiration

[caption id="attachment_31064" align="aligncenter" width="640"] Scene from Rocky?[/caption] It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we 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 much colder! However, the 'euphoric high' was worth it. It was like medicine healing the mind. [caption id="attachment_4988" align="aligncenter" width="535"] Go on, climb…

11Feb 2016 by Ronny Allan 12 Comments

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and 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 the…

02Feb 2016 by Ronny Allan 21 Comments

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 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 " ... 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…

15Jan 2016 by Ronny Allan 10 Comments

Alcohol – the NET Effect

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…

29Dec 2015 by Ronny Allan 2 Comments

Neuroendocrine Cancer – a Doctor’s experience

General

[caption id="attachment_4617" align="alignleft" width="225"] Dr Michael Richardson - NET Cancer Patient[/caption] UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now. I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening. In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to…

06Nov 2015 by Ronny Allan 8 Comments

Neuroendocrine Cancer – a difficult jigsaw

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…

19Oct 2015 by Ronny Allan 28 Comments

Scanxiety – I just don’t get it!

Inspiration, Survivorship

OPINIONThe 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 on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying 'blood-testxiety' or 'biopsyxiety'. Why just scans?‘Scanxiety’ - I just don't get it ......or more accurately I just don't get overly anxious about having a scan…

15Oct 2015 by Ronny Allan 16 Comments

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…

05Oct 2015 by Ronny Allan 7 Comments

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

BackgroundNeuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…

04Sep 2015 by Ronny Allan 2 Comments

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…

11Aug 2015 by Ronny Allan 27 Comments

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

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 are 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 in a Cancer ward. I'm not sure why I feel like this; after all, I've had some very scary surgery and I've been having treatment since 2010. However, this thought doesn't seem to balance it…

26Jul 2015 by Ronny Allan 48 Comments

I’m still here

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

I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do.There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way - and that's perfectly understandable.The 5-year milestone was significant, I…

21Jul 2015 by Ronny Allan 16 Comments

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…

14Jul 2015 by Ronny Allan 20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

This is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case,…

07Jul 2015 by Ronny Allan 30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world. Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…

23Jun 2015 by Ronny Allan 4 Comments

Surgery is risky but so is driving a car

Survivorship, Treatment

I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs).To some extent, these debates continue, particularly for pancreatic NETs. Surgery for certain NETs in certain scenarios is a controversial issue for NETs - as outlined in this article - to cut or not to cut. I've…

16Jun 2015 by Ronny Allan 10 Comments

I may be (reassuringly) stable 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 place,…

11Jun 2015 by Ronny Allan 24 Comments

Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

Awareness, Patient Advocacy

OPINIONWhen I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient! So, I left it after the reigning clique found I didn't want to be part of their pity party.p.s. by "Forums", I mean any online group. Joining forums/online patient groupsIn 2013/14, I joined several large Facebook closed groups which function as forums. After…

02Jun 2015 by Ronny Allan 25 Comments

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Neuroendocrine Tumours secreting excess amounts of serotonin, can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Hedinger Syndrome (often known as Carcinoid Heart Disease (CHD)). However, very late diagnoses can present with CHD already in place.Excess serotonin, a hormone released by NETs into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’. It's very similar to the reasons for mesenteric and peritoneal fibrosis…

19May 2015 by Ronny Allan 5 Comments

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 -…

14May 2015 by Ronny Allan 8 Comments

Chasing normality

Living with Neuroendocrine Cancer, Survivorship, Treatment

Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured. More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments. For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests. As I continue living with my cancer, that tempo doesn’t…

07May 2015 by Ronny Allan 4 Comments

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…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

27Apr 2015 by Ronny Allan 11 Comments

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer. They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast…

13Apr 2015 by Ronny Allan 15 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…

06Mar 2015 by Ronny Allan 10 Comments

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship

Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border. It was a fantastic experience, and we met some really interesting people on our 6-day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet. I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what was going on inside their heads and bodies.Visible Illness can have awareness benefitsConversely in 2018, I was…

30Sep 2014 by Ronny Allan 14 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 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…

14Aug 2014 by Ronny Allan 16 Comments

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…

12Jun 2014 by Ronny Allan No Comments

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'. Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain. One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur. If you've had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET)…

31May 2014 by Ronny Allan 4 Comments

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Travel with Ronny

[caption id="attachment_1144" align="aligncenter" width="2560"] Sunset over the Solway Firth (Scotland in the distance)[/caption]The final leg of the our Hadrian's Wall 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…

24May 2014 by Ronny Allan 7 Comments

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 in 2010 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 fully understand the situation, their presence in my life is a great tonic.Perhaps…