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 NETs 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.
I was admitted 24 hours before the surgery was to be performed, this was mainly to provide peri-operative octreotide infusion to derisk the possibility of ‘hormonal crisis’ which is a well know risk with symptomatic NET patients with carcinoid syndrome (and certain other types). In fact the octreotide drip was retained for a couple of days after the surgery before giving me daily shots until discharge.
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 reared its ugly head again in 2018 – 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 particular 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
Please note this is my own personal experience, not everyone needs this type of extreme surgery – read more here.
Thanks for reading