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
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.
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?
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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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 article The Human Anatomy of Neuroendocrine Cancer.
Nick – good luck with the new job. By the way, it’s really OK to say you have Neuroendocrine Cancer!
You can read the full article here if you have a Times subscription.
A couple of years ago, I received a request from a reader asking if I would write an article about all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn’t associated with NETs.
Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it’s an almost impossible task for a wee Scottish guy with less common disease 🙂 I also started to suspect that even the world’s top NET experts had not accomplished it either.
Here’s a picture of my work to date:
I have, however, dabbled in attempts to work out my own problems over the past few years. NETs can present with a ‘syndrome’ – a bunch of symptoms normally caused by excessivehormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond – it’s a real witch’s brew of symptoms. They can also cause non-syndromic issues pertaining to treatment side effects and it must also be noted that even NET patients get regular illnesses which adds to the issues healthcare professionals and patients face in monitoring NETs.
In my article “Neuroendocrine Cancer Syndromes – early signs of a late diagnosis”, I focused 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 for carcinoid syndrome. I also compiled an article about the source of flushing and diarrhea given there were many differential diagnoses and not just syndromes.
NETs vs Other Illnesses
Adding another jigsaw piece to the issues with cancer and side effects – common comorbidities (many of an endocrine nature) can arise simultaneously. Is it connected with NETs are just another illness to manage alongside? All of these factors can make it really difficult to determine the source of the symptoms. I’m always conscious that the majority of NET patients are in their 5th decade onward and at an age where things start to go wrong quite naturally due to ‘time’ and ‘wear and tear’.
Here’s one 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 – a report published in Feb 2018 claims that diagnoses have doubled in 20 years. I’ve used the diabetes link as an example, there will be many other very common factors at play, e.g. hypothyroidism an age and gender relation issue. It is certainly possible that many of the problems people face might just be an as yet undiagnosed/underlying condition, unconnected with NETs. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”. Working it out is rather difficult though. Sometimes pragmatism is required.
Syndromes vs Side Effects of Treatment
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) carcinoidsyndrome 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. One of the reasons why forums can be good at frightening rather than frighteningly good. Personally, I never compare myself to strangers on the internet. 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 diagnosisor has been diagnosed and then continues to have numerous problems after initial treatment. I also have a little bit of sympathy for primary care 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 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 totally 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! It’s useful to know about the range of tumor markers and hormone markers – read more here.
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 or access to support information that works.