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- In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life March 21, 2017
- NETwork with Ronny © – Newsletter February 2017 March 1, 2017
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) February 27, 2017
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD February 21, 2017
- 25 Life Lessons From a Two-Time Cancer Survivor February 20, 2017
- Things not to say to someone with cancer February 2, 2017
- NETwork with Ronny © – Newsletter January 2017 February 1, 2017
- Endoscopy for NETs – taking the camera to the tumour January 27, 2017
- Road ahead closed – Bowel Obstructions January 25, 2017
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib January 21, 2017
- Progress report on NETSPOT® and PRRT (Lutathera®) January 18, 2017
- Neuroendocrine Cancer: Nodes, Nodules, Lesions January 17, 2017
- Neuroendocrine Cancer: To cut or not to cut? January 14, 2017
- Does your body now have an extra organ? The MESENTERY January 4, 2017
- NETwork with Ronny © – Newsletter December 2016 January 1, 2017
- Lanreotide vs Octreotide December 28, 2016
- Keep your light burning December 18, 2016
- Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas December 14, 2016
- Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016 December 6, 2016
- Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! December 5, 2016
- NETwork with Ronny © – Newsletter November 2016 December 2, 2016
- NET Syndromes – chicken or egg? November 30, 2016
- Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. November 29, 2016
- Neuroendocrine Tumours – benign vs malignant November 28, 2016
- Happy Thanksgiving November 24, 2016
- Chemo or not Chemo – that is the question November 23, 2016
- Palliative Care – it might just save your life November 18, 2016
- “You must be doing OK, you’ve not had chemotherapy” November 16, 2016
- One every 2 hours November 10, 2016
- Scans for Neuroendocrine Cancer – If you can see it, you can detect it! November 5, 2016
- Neuroendocrine Cancer – Exciting Times Ahead! November 2, 2016
- Let’s hear one massive THUNDERCLAP on NET Cancer Day October 26, 2016
- Neuroendocrine Cancer: Hurry up and wait October 21, 2016
- Did you hear the one about the constipated NET patient? October 18, 2016
- Neuroendocrine Cancer – were you irritated by your misdiagnosis? October 11, 2016
- Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had October 5, 2016
- Neuroendocrine Cancer: Patient Power! October 1, 2016
- Neuroendocrine Cancer – tumour markers and hormone levels September 28, 2016
- “Not the Stereotypical picture of sick” September 19, 2016
- Procrastination – it’s a killer September 19, 2016
- Neuroendocrine Cancer – the diarrhea jigsaw September 15, 2016
- Please vote for Neuroendocrine Cancer September 12, 2016
- Serotonin – the NET effect September 8, 2016
- Neuroendocrine is not your average cancer but it can be pretty mean August 25, 2016
- Stop talking about it, just go do it! August 24, 2016
- Not every illness is visible August 8, 2016
- Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought? August 2, 2016
- Living with Cancer – or Cancer Survivor? August 1, 2016
- Exercise and Cancer: Forward is Forward July 27, 2016
- NET Cancer: Somatostatin Receptors July 25, 2016
- NET Cancer: Troublesome Thyroids July 23, 2016
- What you don’t know might kill you June 24, 2016
- Neuroendocrine Cancer – it can be ‘smoke and mirrors’ June 15, 2016
- Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch June 13, 2016
- Let’s talk about living with NETs June 9, 2016
- Make some noise for a silent cancer June 8, 2016
- It’s scary searching Cancer online June 7, 2016
- Turning points May 28, 2016
- The 5 E’s (of Carcinoid Syndrome) May 25, 2016
- PRRT and Chemo combination therapy – on trial May 20, 2016
- Don’t worry, I really am OK! May 19, 2016
- I can do it May 9, 2016
- Never mind the Bollocks April 21, 2016
- NET Cancer – unexpected detours April 21, 2016
- Living with Neuroendocrine Cancer – it takes guts April 15, 2016
- 5 years since liver surgery April 12, 2016
- Somatostatin Analogues and delivery methods in the pipeline? April 4, 2016
- US FDA Approves Telotristat Ethyl (XERMELO™) – an oral treatment for Carcinoid Syndrome March 31, 2016
- 100,000 blog views – thank you! March 21, 2016
- I’m only as good as my last scan March 21, 2016
- Dear Doctors – There’s no such thing as a ‘good’ cancer! March 17, 2016
- Running in the Family (Blog 1) – Multiple Endocrine Neoplasia (MEN) March 9, 2016
- Carcinoid – What’s in a name? February 25, 2016
- Patient power – use it! February 18, 2016
- Sometimes you just need to go and climb that hill! February 15, 2016
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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 18 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
thank you for reading.
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 Cancer 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 NET Cancer means that treatment 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.
You can read about the gory details of the surgery here but I have 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?
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 (an 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 is 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 ………
Part two covers the second period of my 18 day stay and can be read by CLICKING HERE
thank you for reading.
Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day.
Like a lot of people, Nick’s life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend.
He assumes the post vacated by James Naughtie, an extremely hard act to follow – a man who would frequently sink his teeth into a politician’s leg and not let go until he got an answer – or at the very least he would paint them into an embarrassing corner. It’s a tough job as most politicians are extremely wily characters, masters of ‘double speak‘ and expert in answering a question without getting into the detail the questioner wants. As we all know, the devil is in the detail.
Although the article introduces some new facts about his cancer experience, I was really looking for more detail. That said, even without the ‘devil’, the latest article is inspiring for most (….man goes back to work after a tough fight with Cancer).
So why am I so interested in the detail of Nick’s Cancer? Simple – because he does not have Lung Cancer as frequently and widely reported in the media. Lung Cancer is the ‘politician’s answer‘ or the ‘double speak answer’ to avoid going into complicated detail. The correct answer is he has Neuroendocrine Cancer with a Lung Primary.
I’d really like to turn the tables and interview Nick, we seem to have so much in common. We are both self-confessed workaholics, we both went to an annual Asthma clinic, we both told our Asthma nurses we had lost weight and we both were sent for a scan as a result. Following our scans, we were both diagnosed with Neuroendocrine Cancer. Like Nick, I also have an interest in politics but wouldn’t make a good one due to my love of detail and hate of ‘double speak‘.
This is not a new problem for Neuroendocrine Cancer. The most famous of patients is the Apple founder and now deceased Steve Jobs. He is frequently (even to this day) reported to have had Pancreatic Cancer rather than Neuroendocrine Cancer of the Pancreas (an Insulinoma to be precise). Although not as famous as Jobs, UK musician Wilko Johnson (of Dr Feelgood fame) is a similar story. I touched on this dilemma in my blog The Anatomy of Neuroendocrine Cancer.
Nick – good luck with the new job. By the way, it’s really OK to say you have Neuroendocrine Cancer!
Thanks for listening
You can read the full article here if you have a Times subscription.
A couple of months ago, I received a request from a reader asking if I would blog about all the symptoms experienced by a Neuroendocrine Cancer (NET Cancer) patient and how to sort out what is and what isn’t associated with NET Cancer.
Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it’s an almost impossible task for a wee Scottish guy with a rare (ish) disease 🙂
I have, however, dabbled in attempts to work out my own problems over the past 4-5 years. NET Cancer can present with its own ‘syndrome’ – a bunch of symptoms normally caused by excessive hormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond. In my blog “Neuroendocrine Cancer Syndromes – early signs of a late diagnosis”, I focussed on the key symptoms experienced pre-diagnosis and then discussed how you might go about sorting out the symptoms from main side effects post treatment (another regular conundrum for most). On a similar subject, you might want to check out my 5 E’s blog.
Adding to the issues with cancer and side effects, common comorbidities (many of an endocrine nature) can arise simultaneously and many patients are also (coincidentally) at an age where the body naturally starts to go faulty. All of these factors can make it really difficult to determine the source of the symptoms.
Here’s another classic example of this problem, I can see many people on forums also have diabetes (an endocrine disease). In the United States alone, nearly 7 million people have undiagnosed diabetes, according to the American Diabetes Association. I can also see from the news in UK, that this is becoming a much bigger deal too. I’ve used the diabetes link as an example, there will be many other factors at play. It is certainly possible that many of the problems people face might just be an as yet undiagnosed condition unconnected with NET Cancer. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”.
In fact, on forums where most people have a diagnosis and are undergoing treatment, there is regular discussion and Q&As about the source of symptoms, i.e. are they a result of a functioning syndrome (i.e. a consequence of the cancer) or something else? For example, some people complain they still have (so-called) carcinoid syndrome diarrhea after bowel surgery………that needs some careful thought and understanding before coming to what might just be the wrong conclusion, particularly if all tumour markers are normal. I have lost count of the number of times someone has asked about a symptom on a forum and got 50 different answers. It’s not easy. I just hope most people are using the forums as ‘sounding boards’ and are simultaneously addressing these very complex issues with their doctors when they are genuinely concerned.
I really feel for anyone who is going through a difficult diagnosis or has been diagnosed and then continues to have numerous problems after initial treatment. I also have a little bit of sympathy for medical staff on the basis this is just one of over 200 types of cancer, many of which have wide age groupings adding to the complexity and difficulty. Moreover, many of the symptoms experienced by NET Cancer patients on analysis look very similar to everyday illnesses and other ailments. And if that wasn’t demanding enough for doctors, many patients present with already established and diagnosed comorbidities (other illnesses) which add another level of complexity. These difficulties can then continue throughout treatment. It can be a real challenge and I’m sure even Doctors can be flummoxed on occasion by patient presentations.
It is extremely difficult to “sort out the symptoms” when faced with multiple locations/tumour sub-types, multiple treatments causing multiple side effects, multiple side effects causing multiple symptoms, multiple comorbidities with symptoms similar to cancer syndromes and treatment side effects (and vice versa). This disease can be very individual and what happens to one might not happen to another. Although we hope doctors generally take a holistic view when treating NET patients, I have a view that sometimes focussing in on a particular symptom might occasionally be a more effective route (the bottom-up approach – pun not intended!). When eating an elephant, take one bite at a time!
One thing I have learned ……educate yourself to the best of your abilities. This will help you to better advocate for yourself. Improvements are possible.
Neuroendocrine Cancer is a very difficult jigsaw and you sometimes need to look very hard for the missing piece! The ‘missing piece’ can be variable and very individual, i.e. a NET specialist, access to a particular treatment or even just more support.
What was your missing piece?
Thanks for reading
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