Ronny Allan’s ‘PoNETry’ © – An Ode to Lanreotide


You may also enjoy my Invisible Illness ‘PoNETry’ – click here

Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to:

RonnyAllan.NET and/or NET Cancer Blog

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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My Diagnosis and Treatment History

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Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!



patients included

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Let’s talk about living with NETs

being_there_front
Graphic courtesy of Ellie McDowell

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 to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living

Thanks for reading

Ronny – diagnosed 2010 and still a newbie

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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

 

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Surgeon Mr Neil Pearce and Interventional Radiologist Dr Brian Stedman

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 area at the time 🙂

Surprisingly, the comfortable and very adjustable hospital bed was starting not to seem so comfortable and I was really looking forward to my own bed back home.  Moreover, daytime TV was starting to become repetitive and boring!

However …… I had a pain right in the middle of my chest and it gradually became intolerable.  To cut a long  story short, a CT scan confirmed the presence of a postoperative seroma (a collection of fluid) and a minimally invasive aspiration was ordered. The radiologist covering my post diagnostic scans was also an ‘Interventional Radiologist’ so was able to carry out this procedure guided by CT scan.  There was a long list of scary risks explained by Dr Brian Stedman and I was put more at ease when he told me he had carried out this procedure more than anyone else in the south of England.  It was amazing to watch and it reaffirmed the amazing skills I knew this guy had.  The liquid was successfully removed (pale yellow/beige) and it later tested negative.

As a consequence of this issue plus an elevated white blood count (indicating a possible infection), I was unable to go home as planned.  However, I was in exactly the right place to continue my recovery.  I had already been ‘declared’ fit to go home by the Physio, so used the additional time to improve my mobility and strength.  The antibiotics dispensed for the suspected infection played havoc with my bowels exacerbating the post-operative problems already being encountered.

On 26 Nov 2010, I was released after 19 days of 24 hour care, doctors and nurses ‘on tap’.   I’ve read it’s normal for patients to feel insecure when leaving hospital after very close support from trained medical staff.  Although I was to be well looked after by close family, I still felt a little exposed as Chris drove me away from the hospital complete with a plethora of various drugs I would need to continue my recuperation at home.  The next few weeks were also tough but that’s another story for another day.  However, it was good to be home!

Read about my Liver surgery which took place some 4 months after this one.  LIVER SURGERY

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Neuroendocrine Cancer Surgery – a patient experience (part 1)

Neil
Chris and I with our friend and hero Mr Neil Pearce – my surgeon.

First Surgery – 8th – 26th November 2010

Memories of my 18 day stay in hospital from 8 – 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NET Cancer is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients.

Prior to being diagnosed with Cancer, my experience with hospitals was very limited and I had always been a tad squeamish when it came to routine injections. So having major surgery with a projected 10-14 day stay in hospital was a massive challenge. However, I remember being fairly relaxed leading up to this event.  I suspect I had accepted my situation; and that a combination of pragmatism and trust in my surgical team had conquered any fear.

The surgery, which lasted 9 hours, was really in two parts, firstly to get rid of my primary in the small intestine plus any accessible locoregional stuff.  Basically the surgeon removed 3 feet of my small intestine, carried out a right hemicolectomy, and also removed ‘oodles’ of lymph nodes in the mesenteric region, with careful blood vessel reconstruction required. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels.  This is an issue which has returned in 2018 and you can find an update by clicking here.

Spookily, I woke up from the anaesthesia just after midnight on 10th November, I woke up on NET Cancer Day.

I’ve not spoken too much about the first week in the hospital after surgery – mainly because some of the details remain scant. However, there are four stories I remember in some detail and they even make me smile, although I wasn’t laughing at the time!

Physio (a synonym for pain!)

One of the key things I remember was the extraordinary amount of tubes and other things connected to my body. Had I drawn a picture, it would have looked like the map of the London Underground. Some of them were taking things out of my body (temporary ‘toilet’, wound drains, etc) and others were for putting things in (drugs, pain killers, nutrition, etc). My legs had ‘circulating leg wraps’ to prevent the formation of blood clots. They were very uncomfortable and sweaty but important.  I appeared to be pinned very tightly to the hospital bed – any thoughts of escape were quickly subdued by the sheer weight of equipment.  It was, therefore, a total surprise to me how soon the Physiotherapists arrived to administer torture 🙂  The difficulty of arranging all the tubes in order that I could just even sit up led me to believe it would not be possible.  However, they persevered and I had of course forgotten, this is what they do for a living! Putting the tube issue to one side, the very act of sitting up and putting your feet on the floor with a 12″ north to south abdominal wound still repairing is one of the most difficult and painful things I’ve ever done (even after activating my Pain Controlled Analgesia (PCA) – more drugs!). However, and I say this in hindsight, this is a very important part of the healing process and patients need to be compliant!  I eventually got used to it and starting off with a walk around my bed, a walk to the nurse desk, a walk up and down the ward….. this eventually led to a walk around the hospital once some of the tubes were removed.  However, I was feeling so bad one day, I refused physio which resulted in a lecture from my surgeon (see photo above) later that night – the discussion ended with the words “You are a winner”. It helped as I sprinted up and down the ward corridor next day!  Isn’t it amazing how a kick in the ‘ass’ can also function as medicine?

Pain Control

The Pain Controlled Analgesia (PCA) button was never far from my hand.  After surgery, it isn’t completely painless, but the PCA does help.  It normally contains morphine which helps kill the pain but comes with other side effects including sleepiness (handy), foggy brain, inability to focus, strange dreams and on occasion mild hallucinations (I swear the people on the wall picture opposite my bed were moving!).  After a few days, this was replaced by drip fed paracetamol (I think).

Re-establishing the food trail

I hadn’t given this too much thought prior to the surgery but when they remove sections of your intestines (in my case the terminal ileum and the ascending colon), there has to be a new join (anastomosis) and this needs time to heal. This means a gradual and gentle return to normal eating.  One of the most annoying tubes was the nasogastric tube (NG tube).  I woke up with this tube already inserted but around day 3 it was removed whilst I was awake (a little bit scary).  However, I was sick a few times (quite scary), so it was re-inserted (a little more scarier than removal).  However, once it came out for the second time (still a little bit scary), they gave me a rather tasteless drink called ‘Fortisip’ which apparently had the proteins and nutrients I needed whilst I waited to move onto normal food. My first proper food after a few days was ‘heaven’ – chicken soup followed by ice cream and jelly (for North Americans, please note jelly is not jam!)

Re-establishing the ‘poop’ trail

Technically, this is just an extension of the ‘food trail’ info above.  However, a story that I have hardly ever recounted follows.  I think this was around day 15/16 Nov or thereabouts.  My surgeon kept quizzing me on ‘gut feelings’ i.e. burping, hiccups, wind etc.  I hadn’t realised he was working out when to offer some help re-establishing this element of my recovery.  I think I was late so some milk of magnesia was given one morning. That evening, nothing happened and so the night shift nurses were primed to offer me a ‘special’ suppository which I was assured would be a great help in moving things in the right direction.  I declined their very kind offer to carry out the ‘insertion’ instead opting for some dignity retention – there wasn’t much left at this point but I was determined to hang onto it!  As I was laying there, I quickly scanned the remaining tubes (by this stage, I was down to 5 or 6), I reached round and it very quickly dawned on me that this was ‘mission impossible’.  I rang the bell as a signal that sometimes practicality overrules dignity.  Like the physio thing above, I had forgotten that Nurses do this all the time.  Ten minutes later, the bell again summoned the nurses who helped me and my tubes to the toilet. The toilet/bathroom was to become a familiar place over the coming weeks.

Following the surgery and when I was mobile, I weighed myself and found had lost a complete stone (14 lbs).  Weight loss led up to my diagnosis and continues to be an issue today – read more here.

Part two covers the second period of my 18 day stay and can be read by CLICKING HERE

Almost 8 years later, please check out my new challenge – click here.

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patients included

 

 

Screw that diagnosis and get on with it!

 

Screw that diagnosis
Screw that diagnosis and get on with it!

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 hormonal female teenager).  I took my diagnosis, thought about it for awhile, hung out on the sofa…ate a few bonbons and then, pulled my head out of my a**.  I went back to work as a Patient Care Assistant at our local hospital (feeling the need to go “medical career” again), trying to figure out what to do next – needing to get my outrageous health insurance premium off my husband’s back.  I was pissed, I had to go back to work, I had CANCER, for God’s sake – I should be looking into disability or anything that will bear this burden – but, I was well enough to bear it myself.

Continued to pull my head out of my a** and decided to pursue a career as a Registered Nurse, knowing that I, at the ripe age of (now) 53, still had a whole boatload of stuff to offer.  So, 4 years ago, I strapped my pump (yes, I’m a “pumper”) and my ‘kahoonas’ on and I went back to school full-time, working part-time, raised my hormonal daughter, rode my (new) gloriously wonderful old Off the Track, Thoroughbred “Gryphon”, got my Harleys back out and got my game on.

Yesterday, I sat for the Pennsylvania State Nursing Board test and today….I found out that I PASSED!  I am now officially, K**** ******** RN

If you’ve got the health (screw that diagnosis) and you’ve got the need to make a change – MAKE IT and make it count!  As of 15 minutes ago…I applied for an Oncology Nurse position 🙂 “

Go K**** !

Thanks for reading

Ronny
Disclaimer
My Diagnosis and Treatment History

 

Please flush after use!

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 – no thanks

please-flush-after-use-350x225-polyIn 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 – no thanks 🙂

You're kidding me!
You’re kidding me!

When I read about some of the issues others deal with, I think I’m one of the luckier Neuroendocrine Cancer patients regarding these type of issues. I’m in reasonable condition considering the extent of my disease and my subsequent treatment.  I put up with a number of irritants but I don’t seem to suffer as much as some appear to do. That said, I think I sometimes downplay my own issues though, I’m well known for ‘not frightening the horses’.

One thing that does worry me is the occasional stomach cramp. Hopefully, I’m not tempting fate as they seem to be vastly reduced in the past 3 years. They can sometimes be very painful and debilitating – normally resolved by going to the toilet (and hopefully one is close!). Handy if I’m in the house, not so handy if I’m on a plane, in town or anywhere where toilets are not in abundance. I did write a blog on this subject following a very painful episode on my Hadrian’s Wall 6 day adventure – My stomach cramps my style’

As I’ve had intestinal surgery, Bowel obstructions are a potential worry. To date, pain and sluggishness have always been just a bout of constipation.  Read my article here.  You can carry a card for the bowel obstruction risk courtesy of NET Patient Foundation – these guys have a card for most stuff.

test npf

I don’t suffer from ‘carcinoid syndrome induced diarrhea’ but long flights are one of the few times I take Loperamide (Imodium).  For long drives and trips to town, I’m simply reliant on toilet availability. Normally, I just wander into hotels and restaurants and help myself. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to get a key – again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet!  If sufficiently urgent, I’m even prepared to ask to use the staff toilets in shops etc. I do have a card in my wallet, which again, I obtained from my friends in the NET Patient Foundation.  I’ve not yet had to use it in anger. I also noticed that Macmillan are now doing something similar.

NPF Toilet Card Back

 

On the subject of urgent visits to the toilet.  I recently wrote a blog about a lady with inflammatory bowel disease (IBD) and I suspect in a worse condition than most Neuroendocrine Cancer patients.  She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent and it apparently went viral.  Just goes to show that with invisible illnesses Things are not always how they seem.  The letter is brilliant.

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For those who are interested, NET Patient Foundation also do a Carcinoid Crisis at risk emergency card to keep in your wallet/purse so that doctors can be forewarned of the aversion to anaesthetics etc. Mine is in my wallet at all times just in case.

CARCINOID CRISIS NPF 2018 (2)

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

The C Word

CEFwr-HW8AAB04X‘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 in two people in the UK will be diagnosed with some form of cancer during their lifetime. Personally I find that a staggering statistic. We definitely need to talk about cancer!

We now live in a more open and some would argue less stoic society where more people are prepared to talk about their serious illnesses. Together with government and other organisations’ health campaigns, backed up by the rise of social media, the ‘C Word’ is not just ‘big’, it’s fantastically huge! Consequently, more people know and understand the disease and more is known about the science of the disease.  This is not only creating better diagnostic tools and treatments, but has introduced a raft of preventative measures and messages resulting in increased awareness amongst the general public.  Bloggers do their part too 🙂 – particularly with the rare and less common cancers which sadly don’t make the headlines enough.

If you look at the statistics for Neuroendocrine Cancer, there is both an increased incidence (rate of occurrence of new cases) and increased prevalence (living with the disease). The increased incidence is most likely due to better diagnostic tools but some credit must be given to better awareness (medical staff and the public). Increased prevalence is most likely due to a combination of better treatments, mostly good prognostic outcomes and people are generally living longer.

I’d like to focus in on awareness as that is the aim of my blog. I was diagnosed in 2010 but I didn’t really come out of the ‘cancer closet’ until 2014 and this resulted in a number of lifestyle changes plus the creation of this blog. I have plastered what some would call personal and private information all over the internet in the name of awareness. Some people might have raised eyebrows about some things I published. However, I genuinely believe that the only way to draw attention to the issues faced by Neuroendocrine Cancer patients is to tell the story of Neuroendocrine patients in factual, educational and no holds barred ways. I also like to put a positive spin on everything and where appropriate, a smattering of humour. I do this not just because I think of myself as a positive and humorous person but because I think there is still a lot to be positive about and humour is medicine as far as I’m concerned 🙂

Back to ‘The C Word’.  If you want to be inspired, if you want to feel positive, if you want to combine these two things with humour, then please watch ‘The C Word’ – the portrayal of the late Lisa Lynch broadcast on BBC last week.  This true story was brilliantly put together to display the range of emotions and problems coming out of any cancer diagnosis; shock, anger, acceptance, etc. Moreover, it also covers all the practical issues such as time of work for the patient and the next of kin, holiday insurance, to the effects on close family.

Lisa Lynch took up blogging after being diagnosed with advanced breast cancer. When you read her bio “I’m a cancer bitch but not cancer’s bitch” – you just know you’re dealing with someone positive. There are few TV programmes that I’ve watched in total silence but this was one of them.  For me it brought back memories of my own experience of going through diagnosis and treatment. The issues of time off, holiday insurance, effects on family and friends, trying to establish a new normal, all resonated.  I’d be lying if I said I didn’t shed a tear (or two).

I guarantee you many women will have checked their breasts for lumps during and after watching that programme and as a result, many will have gone to see a Doctor.  Awareness saves lives.

Watch the programme here (click) (UK only sorry).   This programme is only available on BBC iPlayer until 28 May 15

You can explore her blog here (click)

thanks for listening.

Ronny

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Neuroendocrine – what’s that?

haed-with-question-marks-300x242.jpg
You have what?

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 people look at cancer in anatomical terms. As we know this can often lead to incorrect headlines for famous cancer patients.

I’ve struggled since 2010 to explain this disease in layperson terms. It’s actually one of the reasons for my ‘study’ and my blog.  It’s getting easier, particularly when answering questions. However, if Neuroendocrine Cancer knowledge was an iceberg, I’d still be at the tip!  I did write a post entitled Horrible Hormones which supports an explanation. You might like to read it – perhaps helpful to aid your overall understanding of this post.

The other difficult aspect of explaining Neuroendocrine Cancer is the extent of the Anatomy and Physiology of the Neuroendocrine system which appears in numerous parts of the body. I’ve written about this before at a time when I was fed up with newspaper reports and on-line articles implying that Neuroendocrine Cancer didn’t exist – e.g. by frequently describing Neuroendocrine Tumours of the Pancreas as Pancreatic Cancer and Neuroendocrine Tumours of the Lung as Lung Cancer. During some of my own verbal discussions, mention of the small intestine was frequently met with so you have Bowel Cancer. NO I DON’T!  Good time to refresh yourself with my article The Human Anatomy of NET Cancer. This thinking needs to be challenged at every opportunity including while explaining to family and friends.

I’ve therefore decided to attempt a short, generic but still sufficiently detailed explanation of the word ‘Neuroendocrine‘ in relation to my Cancer. I suspect by the end of this article, it will not be as short as I had wished. I do like a challenge 🙂  Here goes:

The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neurons) and produce hormones like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically hormones travel in the bloodstream and makes things happen in another part of the body.

These neuroendocrine cells are scattered throughout the body performing different roles based on location, e.g. Neuroendocrine cells in the digestive system regulate intestinal movements and the release of digestive enzymes

When Neuroendocrine tumours develop in these cells, they can not only then spread to other locations but they can also secrete excess amounts of hormones and substances which can cause an adverse effect on the body’s natural rhythm. A collection of these symptoms is known as a syndrome. There are several different syndromes depending on the location and type of Neuroendocrine Tumour.

The presence of the syndrome nearly always indicates the tumours are functional. Sometimes tumours are non-functional (i.e. they do not overly secrete excess hormones or cause symptoms), these non-functional types can be even more difficult to diagnose.

Most Neuroendocrine Tumours are slow-growing and therefore offer good outlook if identified as early as possible and treated. Even for metastatic patients, the outlook is relatively good with the right treatment and surveillance.  Some are more aggressive behaving like adenocarcinomas and need a different approach to treatment. 

_________________________

I found it very difficult to write a short and generic explanation of the word ‘Neuroendocrine‘ in relation to cancer – no wonder I seem to spend 10 minutes verbally explaining to people and…… no wonder they sometimes look at me with glazed eyes 🙂 However, this is my offer. This is as brief as I can make it to provide understanding. I’ve cut out more than I’ve left behind and feel like I’m short-changing you! However, it needs to be basic and it needs to be short.

Explanations which comprise lists of complex and unpronounceable words each with their own constraints and variable meanings leads to chaos and people switching off. I could have just referred to one of the excellent publications on the web but this isn’t really practical when in an impromptu conversation with wide-eyed listeners. That said, I believe the combination of this post and (if you see light-bulbs) the other 2 linked posts within, is a good way to answer the question if someone is willing to listen (and read a short reference).  You may therefore need to follow-up the ‘verbal’ with the ‘written’.

To summarise, I intentionally made this explanation as generic as possible. Trying to explain every single type of Neuroendocrine Cancer will confuse and tire the best listener. If I was using this today, I would add my own additional comment about where my tumours were found and what treatment I’ve had – this I can do without a script! However, if you think this explanation is of use when verbally explaining Neuroendocrine in relation to your cancer, please feel free to share my blog post to aid understanding.

Neuroendocrine – what’s that?  I didn’t have a clue …… until I was diagnosed with it!

p.s. Neuroendocrine Cancer is not a ‘type’ of another cancer!

p.s. the little suckers get everywhere!

p.p.s. the anatomy of Neuroendocrine Cancer is a key awareness message – so Lets keep raising our ‘sites’ !

 

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

Please Share this post

Do you suffer from NET Brain?

This isn't me by the way!
This isn’t me by the way!

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 surfers, base jumpers, bungee jumpers, climbers, extreme sport types and those looking for this famous clothing brand, have now learned something about Neuroendocrine Cancer 🙂  Interestingly, there’s also been a search using the phrase “humor fat german nurse syringe to butt” which found my blog site. I wonder what that was about?

Conversely, NET (Cancer) advocates and patients may come across the term ‘NET’ thinking this is something associated with Neuroendocrine Tumours only to find it’s something about ‘technology’ – I know some NET patients who would be equally happy in both areas! Had he been alive, Steve Jobs (the most famous of all NET patients) would have been happy with this, most likely declaring his condition as ‘iNET‘. However, the diversion during searches is more likely to be in our direction given the extreme popularity of all things ‘NET’ in the IT world vs. the niche and esoteric subject of Neuroendocrine Tumours (NET).

This diversion happened to me last week when I came across an article in the UK news where the term ‘NET’ was used in conjunction with a part of the anatomy, so it immediately caught my eye.  It was a term I hadn’t heard before so thought it might be some new research worth ‘tweeting’ or for further analysis as a potential blog post. The article was entitled “Do you suffer from NET BRAIN?”. However, upon reading, I found it was news of research by a group of psychologists who claimed ‘tech’ (meaning IT/mobiles/tablets etc) makes one in 10 people into “anti-social and distracted narcissists” and that it was now a recognised medical disorder called NET BRAIN.

I laughed out loud (LOL), in fact, I also LMAO and was ROFL. Perhaps this was a reaction to disguise the feeling that I might already be suffering from this condition although I’m content it has nothing to do with my NET (are you confused yet?). Apparently the main symptoms of NET Brain are ‘poor attention span’ (PAS) and a ‘fear of missing out’ (FOMO) and personally I would also add the use of #dafthashtags and extreme use of three and four letter abbreviations (TLA and FLAS) into the mix.

What can I say … I don’t think I have PAS but I confess to sneakily checking twitter/emails/Facebook posts and my blog stats on a (shall we say) ‘frequent’ basis. I am, however, far too old for FOMO – I quite enjoy my 8 hours sleep a night (part of my new normal) and normally have no issues getting to sleep.  The article went on to say ‘people who are classed as passionate and uninhibited are three times more likely to become addicted to technology than others’. I’m passionate about stuff but I’m not that uninhibited (#tooconservative #annoyinglyanalytical).  IT and ‘social media’ (tech) are essential for my mission to spread awareness of NET Cancer – that rules out any narcissist tendencies. However, it does rule in what might be perceived as an addiction, but in reality I’m just a man on a mission.

One thing I did draw out of the article is that ‘NET Brain’ is definitely more prevalent and has a much higher incidence rate than NETs. However, if you actually suffer from FOMO, then you had better sign up for my blog, my daily twitter newsletter and Facebook immediately. I wouldn’t want you to miss anything 🙂

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

 

 

Colonoscopy Comedy

 

No more prep please!

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 diagnosis.  Like the guy in the story below, I don’t remember a thing. However, what I do vividly remember (and clearly so did he!), is that the preparation for the procedure can be a ‘challenge’.  I can vouch for that.

I came across this real but anonymised journal which you may enjoy and hopefully have a little laugh too.  I suspect those who have had a colonoscopy (or two) will enjoy it more than others! I suddenly realised colonoscopies can be funny on the basis I laughed out loud reading this.  The quotes from doctors at the end are hilarious!

Colonoscopy Journal:

I called my friend Axxx, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Axxx showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Axxx explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.  I nodded thoughtfully, but I didn’t really hear anything he said, because my brain was shrieking, ‘HE’S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!’

I left Axxx’s office with some written instructions, and a prescription for a product called ‘MoviPrep,’ which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America’s enemies.

I spent the next several days productively sitting around being nervous.
Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn’t eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes – and here I am being kind – like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ‘a loose, watery bowel movement may result.’ This is kind of like saying that after you jump off your roof, you may experience contact with the ground.  MoviPrep is a nuclear laxative. I don’t want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ‘What if I spurt on Axxx?’ How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Exxxx put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Exxxx was very good, and I was already lying down. Exxxx also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn’t thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house down. When everything was ready, Exxxx wheeled me into the procedure room, where Axxxx was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Axxx had it hidden around there somewhere. I was seriously nervous at this point. Axxxx had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was ‘Dancing Queen’ by ABBA. I remarked to Axxx that, of all the songs that could be playing during this particular procedure, ‘Dancing Queen’ had to be the least appropriate. ‘You want me to turn it up?’ said Axxx, from somewhere behind me. ‘Ha ha,’ I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like……………

I have no idea. Really. I slept through it. One moment, ABBA was yelling ‘Dancing Queen, feel the beat of the tambourine,’ and the next moment, I was back in the other room, waking up in a very mellow mood. Axxx was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Axxx told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

On the subject of Colonoscopies……..

Colonoscopies are no joke, but these comments during the exam were quite humorous!!!!! A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

1. ‘Take it easy, Doc. You’re boldly going where no man has gone before!’
2. ‘Find Amelia Earhart yet?’
3. ‘Can you hear me NOW?’
4. ‘Are we there yet? Are we there yet? Are we there yet?’
5. ‘You know, in Arkansas, we’re now legally married.’
6. ‘Any sign of the trapped miners, Chief?’
7. ‘You put your left hand in, you take your left hand out…’
8. ‘Hey! Now I know how a Muppet feels!’
9. ‘If your hand doesn’t fit, you must quit!’
10. ‘Hey Doc, let me know if you find my dignity.’
11. ‘You used to be an executive at Enron, didn’t you?’

And the best one of all:

12. ‘Could you write a note for my wife saying that my head is not up there’

————————————————————————–

thanks for listening

Ronny

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