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This is a personal story but a more technical description of Small Intestine surgery for a NET can be found by clicking here. This is not normal bowel surgery.
Often the decision to cut or not to cut is a tough one.
My own experience
8th – 26th November 2010
Memories of my 18-day stay in the 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 when 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 are one of a small number of cancers for which surgical debulking can in many cases confers 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 the 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 Journey to the Hospital on 8th November didn’t go smoothly!
Didn’t get off to a good start, on the way to the hospital, my car was shunted from behind at a roundabout. Fortunately, no one was injured and I just had a slight discomfort in my neck. The surgeon ordered up an x-ray as soon as I arrived. No problems found, let’s do this!
Surgical Prep 8th November
I had to be admitted 24 hours before the surgery, this was mainly to start the peri-operative octreotide infusion to derisk the possibility of ‘hormonal crisis‘ which is a well-known risk with symptomatic NET patients with carcinoid syndrome. I had carcinoid syndrome at diagnosis and it wasn’t fully under control with daily octreotide. I also remember completing a thousand forms! My surgeon also went through the risks and I signed the patient consent.
Surgery 9th November
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. I was due into the operating room (OR) in the morning but this was pushed back to the afternoon, I guess my surgeon had an unforeseen emergency, I never did ask. I wasn’t too fussed, except I had to fast for longer!
When my time came, I refused the offer of a wheelchair and walked to the OR accompanied by one of my new friends from the ward, I was to get to know these fantastic Nurses over the coming days.
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. However, my case was not normal. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels and required assistance from a vascular surgeon. This is an issue that 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 World Neuroendocrine Cancer Day.
Some of the details remain scant but there are four particular stories I remember in some detail, some make me smile, although I wasn’t laughing at the time!
Physio (a synonym for pain!)
I was in the recovery room for a couple of days before being transferred to my room. One of the key things I remember was the extraordinary number 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, painkillers, 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 the 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 started off with a walk around my bed, a walk to the nurse’s desk, and 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 later that night – the discussion ended with the words “You are a winner”. It helped as I sprinted up and down the ward corridor the 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). Even after a week, I could not focus when reading a newspaper as I tried to catch up with the world’s news.
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 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 attempted but 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, 6.5Kg). Weight loss was a factor which led to my diagnosis and continues to be an issue today – read more here.
Follow on reads:
If the above wasn’t enough, the second week of my recovery was eventful resulting in an extension to the planned 10-14 day stay. Read about it by clicking here
5 months later, I had a liver resection – read about it by clicking here
14 months later, I had a lymphadenectomy – read about that by clicking here.
This type of surgery is not normal bowel surgery – read expert input here and here.
Please note this is my own personal experience, not everyone needs this type of extreme surgery.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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3 thoughts on “Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)”
Same as Elaine, minus the c-sections, managing tubes and pain is definitely a challenge.
Though I haven’t had surgery for my NET cancer, I’ve had several abdominal surgeries including three c-sections, the removal of my gall bladder and a hysterectomy, so much of this sounds very familiar!
Reblogged this on Tony Reynolds Blog and commented:
Your or a friend got major surgery coming up? Recomend you read this blog, knowledge helps overcome fear and increase chances of positive result.