Endoscopy for NETs – taking the camera to the tumour


endoscopy

An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy).  An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out.

Gastroscopy

During a routine 6 monthly check-up at the end of 2016, I mentioned to my Oncologist that I was experiencing what appeared to be very minor heartburn and that it was an unusual symptom for me. He called forward my annual Echocardiogram and also ordered up a Gastroscopy.

I received the Gastroscopy paperwork from the hospital for an appointment on 26 Jan 2017. It offered an option for sedation, either a throat spray to numb the area or a sedative where I would probably not know what was going on. My initial thought was the latter even though it meant a longer visit to the hospital with some other constraints. It also meant I would need to check the sedation to assess the risk of NET Crisis. However, having discussed this issue with the department nurse, I was persuaded to go for the throat spray – apparently 80% of people opt for this method. I just couldn’t resist the statistical challenge!  There were many advantages to selecting this option including getting rid of the sedation risk, plus I could walk out of the hospital immediately after the 5 minute procedure.  The sedation option meant that I would need to remain in the hospital for an extra hour to recover, not drive for 24 hours and be supervised by an adult for 12 hours.

My blood pressure was checked prior to the procedure and systolic was around 145, 10-20 points above my normal ‘cool as a cucumber’ figure.  Clearly, despite my deceptively stoic façade, something was making my heart work faster!

I was really put at ease by all 4 people in the room, two nurses, an endoscopic expert and a technician. However, the procedure itself is not what I would call a ‘breeze’. The throat spray was disgusting and said to taste of rotten bananas but personally I thought it was more like rotten fish!  For the first 60 seconds (total guess) I found myself wishing I had gone for the sedation but the next minute was better after I had stopped ‘gagging’ and was now breathing fairly normally. I found swallowing easy despite the tube and a nurse was also extracting excess saliva using a similar tool used in a dental procedure.  I was also aware that my eyes were watering!  The natural reaction of ‘gagging’ came back at least once but only for a second or two. I would be lying if I said it wasn’t scary at the time.

The procedure seemed to be in parts, he checked the oesophagus, pumped air into my stomach for a better view, sprayed some water (not sure why), took a peek in the duodenum which required an extra swallow from me, using another tool, he took a painless routine sample from the stomach lining to test for CLO (Helicobacter Pylori – a bacterium in the lining of the stomach that can cause peptic ulcers), extracted the air, and then the extraction of the endoscope out from the gastrointestinal tract.  These endoscopes really are like swiss army knives!

The best bit was the extraction!  The other best bit was when he told me there were no real issues.  So it was all worth it in the end!  If anyone wants a copy of my comprehensive and easy to read 6 page Gastroscopy guide, let me know.

Colonoscopy

The other main type of Endoscopy is the Colonoscopy which enters the gastrointestinal tract in the opposite direction.  I’ve had actually both a Gastroscopy and Colonoscopy before in 2008 before I was diagnosed.  I offered the mandatory request to do the endoscopy first if using the same scope 🙂 He’d heard it before! On this occasion I was fully sedated. One minute I was talking to the Gastroenterologist, then the next thing I remember was waking up, job done.  Less stressful but more time intensive. That said, the preparation for the colonoscopy is no joke. You can read about this in my blog Colonoscopy Comedy which also includes a light-hearted story about the preparation phase. If you need a laugh, this is really funny.

Although I have not had these, for completeness, I want to mention several associated procedures. 

Endoscopic Ultrasound (EUS)

endoscultrasound_2012_1_2_59_117741_f1
The head of the Pancreas on the left surrounded by the duodenum, stomach to the right

For patients who have, or who are suspected of having pancreatic disease, their doctor may recommend that they undergo a type of procedure called an endoscopic ultrasound, or more often known as EUS. An EUS is a type of endoscopic examination. The EUS is a scan rather than a camera but a camera attachment will be used at some point, perhaps to do additional checks on the way (endoscopic equipment is quite advanced and reminds me of Swiss army knives).  It involves the insertion of a thin tube into the mouth and down into the stomach and the first part of the small intestine. At the tip of the tube is a small ultrasound probe that emits sound waves.  These sound waves bounce off of the surrounding structures, such as the stomach, small intestine, pancreas, bile ducts, and liver.  These sound waves are then recaptured by the probe and converted into black and white images that are then interpreted by your doctor.  Because the pancreas sits next to the stomach and small intestine, EUS allows the physician to get very detailed images of the pancreas.  This procedure is typically performed in an outpatient setting, and usually takes between 20 and 45 minutes.  One of the advantages of performing an EUS is that pancreatic biopsies can be obtained at the time of the examination.  These biopsies, often referred to as FNA, or fine-needle aspiration, can allow for your physician to collect tissue samples which can later be analysed under a microscope.  Special needles, designed to be used with the EUS scope, allow the physician to insert a small needle through the wall of the stomach or intestine directly into the pancreas. This video explains better: Click here.

Endoscopic retrograde cholangiopancreatography (ERCP)

ERCP is performed on an outpatient basis under sedation (rarely under general anesthesia). Using a “side-viewing” endoscope, called a duodenoscope, the duodenal “papilla”-(a mound-like structure that houses the opening of the common bile duct and the pancreatic duct)- is identified and manipulated. These areas can be examined and x-ray taken of the pancreatic duct, hepatic duct, common bile duct, duodenal papilla, and gallbladder.The endoscope is passed through the mouth and down into the first part of the small intestine (duodenum). A smaller tube (catheter) is then inserted through the endoscope into the bile and pancreatic ducts. A dye is injected through the catheter into the ducts, and an x-ray is taken. Also called ERCP.

Capsule Endoscopy (camera pill)

capsule-endoscopy
“Camera Pill”

Shortly after I was diagnosed, this was mentioned as an option for me as my diagnostic scans were just showing a “mass” and it wasnt 100% clear where my primary tumour was located.  It didn’t happen in the end. Capsule Endoscopy involves swallowing a small capsule (the size of the large vitamin pill).  The ‘cam-pill’ contains a colour camera, battery, light source and transmitter. The camera takes two pictures every second for eight hours, transmitting images to a data recorder about the size of a portable CD player that patients wear around the waist.

Capsule endoscopy assists in diagnosing gastrointestinal conditions in the small bowel such as: bleeding, malabsorption, chronic abdominal pain, and chronic diarrhoea.  Once swallowed the camera moves naturally through the digestive tract. Approximately eight hours after ingesting the camera, patients return to the Endoscopy Unit where the recording device is removed by the nurse, the images are downloaded to a computer and evaluated. The Capsule is disposable and will be passed naturally in the bowel movement.

Sigmoidoscopy

sigmoidoscopyA flexible sigmoidoscopy is a procedure that is used to look inside the rectum (back passage) and lower part of your large bowel (descending colon) and so is like an abbreviated version of a colonoscopy.

Bronchoscopy

bronchoscopyBronchoscopy is a procedure that allows the doctor to examine your trachea (windpipe), bronchi (branches of the airway) and some areas of the lung. A short thin flexible tube with a mini camera built into its tip, called a ‘bronchoscope’, is used for this procedure. The bronchoscope is usually passed through your mouth or nose, into your trachea and bronchi. The doctor can then get a clear view of your airways. During the procedure, the doctor may take samples of tissue (biopsy) or respiratory secretions for examination.  Bronchoscopies can also be used for ablation purposes. You may be interested in this award-winning biopsy and ablation service offered by the Royal Free Hospital in London UK – Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

Thanks for reading about how physicians can take the camera directly to the sites of suspected tumours!

Thanks for reading

Ronny

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Happy Thanksgiving

thanksgiving

Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook pageSo I’m thinking of y’all today!

Now …….. I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (… so I’m told!).  And also a nap right after it’s eaten….. right?

As you know I like to analyse such things …… Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of the year due to the connection of turkey with the word ‘serotonin’.  So for me, this is very educational.  Those who read my blog article on the ‘S’ word may remember that tryptophan is one of the bodies amino acids and is partly responsible for the manufacture of Serotonin in our system.  Turkey is said to be high in tryptophan although most say it is no higher than many other meats.  I’ve also heard the stories about how eating too much turkey makes you sleepy. Melatonin is said to be the hormone which helps with sleep regulation and is manufactured from Serotonin (which is manufactured from tryptophan).  However, the articles I read, (one was from the New York Times and one from Time Magazine) both confirm this is not exactly correct with one describing the turkey/sleepy connection as a “common myth” mainly due to the other food and drink consumed at the same time as the turkey  In any case, what’s wrong with an afternoon or evening nap after a traditional meal?

For those worried about eating too much tryptophan, don’t be, all NET nutritionists say you should not be concerned about this and the only food restrictions that apply are right before the 5HIAA test as directed by your local specialist.

Actually I read that turkey is a really healthy meat to eat, it’s low in fat, full of protein and other nutrients including the important B vitamins that NET patients might be at risk of deficiency (B3 and B12). Note to self …… eat more turkey!

Enjoy your Thanksgiving! It’s OK to have a nap too ……

On a personal note, I’m also very thankful to still be here after 8 years!

im-still-here

Thanks for reading

Ronny

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I’m only as good as my last scan

scancake
Scanning – a piece of cake!

“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 IT YOU CAN DETECT IT! (click here for a post about scans)

octreo-vs-g68
Octreoscan vs Ga68 PET

Scans are also important at the diagnostic phase and I’m sure like myself, many people had their first ever scan at this point.  You can have many checks, investigations and tests but for most, the scan is normally the main test that is going to confirm the presence of tumours.  This then leads to further checks to confirm the staging and grading (i.e. a biopsy) and then hopefully, a proper diagnosis.

I don’t mind scans, they are probably the test that is going to alert my team to anything odd going on.  Thus why I don’t mind doing them – in fact, they are a piece of cake!

Thanks for listening

Ronny

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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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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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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
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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

 

No Fear

NoFear

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 means the testing is working and an investigation or further testing can be put into place to find the problem – and the sooner the better.  Where’s that scanner, get me in it!

One of the most common posts on NET Cancer forum sites is to express personal concerns or worries about upcoming appointments or waiting on the test results. Thinking back to my own countless appointments either for testing, treatment or for receiving results, I appear to be consistently pragmatic in my approach.

The test results will be what the test results will be. Worrying about them is not going to change them!

Bring it on!

You may enjoy my article “Living with Neuroendocrine Cancer – 7 tips for conquering fear”.  Read here

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!

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

mindmatter1

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 professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;

Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.

It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer.  I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.

It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult.  According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here.  And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.

Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic).  If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission?  The latter is indeed very good news and will have impacted the survival figures greatly.

However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL).  These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment.  One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer or ‘cancer in slow motion‘ in respect the well differentiated versions.  In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment.  But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues.  Many people not only live with Cancer but they also live with the consequences of Cancer.

As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂  I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearful and blame every single ache and pain on my cancer (because most of the time it turns out not to be) –  this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial.  One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer.  NET Cancer needs an element of pragmatism now and then!  I also think exercise and nutrition can help body and mind – thus why I listed those factors above.

Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.

I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.

If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor.  In fact, you may appreciate this excellent video from NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.

I also liked this video by Dr Michael Burke, a Psychiatric Oncologist – click here

You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.

8 tips for conquering fear

Thanks for listening

Ronny

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Glass half full or half empty?

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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 detrimental effect on your health, both physical and mental.

When I was first diagnosed with Neuroendocrine Cancer in 2010, I experienced a whole range of emotions from shock and denial, disbelief and anger followed by grudging acceptance. However, those emotions were quickly followed by what I can only describe as determination, tenacity, strength and rock-solid willpower to face what was in front of me.  I cracked on with work as if nothing had happened with only a select few knowing my issue – that was the way I wanted it.  I was very much in glass ‘half full mode’. The work took my mind off the cancer whilst I was put through an extraordinary amount of tests and pre-surgical treatment (Neuroendocrine Cancer/Carcinoid patients will understand what I mean). Eventually, I had taken so much time off for tests and treatment, my secret was out. I was about to embark on major surgery and potentially months off work, so the secret had to be exposed in any case.  I’m not sure what worried me most, the fact that I had cancer; or that people now knew the invincible Ronny Allan was not superman after all 🙂

Since then I have made it my mission to keep my mind busy and to stay positive despite having something which is not curable. That’s not to say I don’t have bad periods and I’m 100% physically and mentally coping. As I said above, a glass half full outlook means you can approach potentially negative situations in a more positive and productive way. In fact, that strategy was used to lift me from a low point in 2013 to the declaration of a ‘new normal‘.

Like many other Neuroendocrine Cancer patients, I have numerous side effects of both the cancer and the treatment.  As an incurable cancer patient, I need to keep an eye on my mind as well as my body.  As a 60-year-old, I also have numerous aches, pains and ailments that most people of this age tend to suffer from and it would be very easy to automatically tie all of these in with my cancer. So I don’t.

That’s not to say I’ve become complacent. Far from it, I investigate issues in some depth and follow them up with primary and/or secondary care until I’m satisfied. Additionally, I’ve spoken with quite a few Neuroendocrine Cancer patients and I try to find out how they cope, how they get by.  I also do this by reading the blogs or websites of cancer patients and if I feel inspired, I will follow their blog or subscribe to their site.

I don’t rely too much on patient forums for my ‘close support’.  Some people tell me they completely avoid forums as they found them too negative and depressing. I know what they mean and at times I’ve been tempted to disengage from all sites. However, I’m conscious that some people are very worried about their condition, particularly during the diagnostic phase or pre-treatment, so I guess there are perceptions at play. As a 5 year survivor, I’ve since learned to filter out or at least try to understand someone’s concerns and I always attempt to inject some positivity and hope into any thread. That said, I’m now more of a ‘forum lurker’ and as some of them can be ‘minefields’, I’ve really cut down my presence.

In my blogs, I’m conscious that my own personal experience is not universal and I would never dream of suggesting that my opinions be substituted for someone else’s. However, I hope that for some people, they can relate to what I have said and take comfort from the fact that there can be light at the end of the tunnel even if it currently looks some distance away!

Finally, I am a strong believer that having a positive attitude is potentially life extending for a cancer patient.  Therefore …… my glass is half full.

Thanks for reading

Ronny Allan – Living with Neuroendocrine Cancer!

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Laughter is the best medicine

specticles

How many times have you heard it said that laughter is the best medicine?  I can certainly remember this phrase being said when I was a child.   There is some Science in Medicine (more applied than pure), so where is the scientific evidence for this claim?  Well after all this time, someone has decided to carry out a study.  Apparently when we laugh, we exercise our muscles, get blood flowing, decrease our blood pressure and stress hormones, improve sleep patterns and boost our immune system. It’s a new area of research known as ‘Psychoneuroimmunology’ – the study of how emotions affect our nervous and immune systems. It’s still a relatively new area of research, but the insights are promising.

The study looked at 20 healthy older adults in their 60s and 70s, measuring their stress levels and short-term memory. One group was asked to sit silently, not talking or reading and not using their mobile phones or tablet devices.  The other group watched funny video clips (personally I would have advised they watched the English football team 🙂 )

After 20 minutes, the participants gave saliva samples and took a short memory test. While both groups performed better after the break than before, the “laughter group” performed significantly better when it came to memory recall. Participants who viewed the funny videos had much higher improvement in recall abilities, 43.6 percent, compared with 20.3 percent in the “non-laughter” group.  The laughter group showed considerably lower levels of cortisol after watching the videos.  Cortisol is a key stress hormone measured via saliva.  The non-laughter group’s cortisol levels decreased just slightly.

Re the amusing picture, I received this in the form of a get well card after major surgery in 2010.  This person clearly understood my sense of humour and I hope you had a good laugh too. My surgeon’s secretary also thought it was funny and had her cortisol levels reduced 🙂  Laughter helps you feel both physically and emotionally healthy and could possibly be as good for you as taking a vitamin, who knows? Furthermore it’s prescription free!  More research is clearly still needed, but why not start to include laughter as part of your health regime?  Read my blog for starters 🙂

Thanks for reading

Ronny Allan

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