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.
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.
You can read a special extract of that period in a newly released awareness and hope post by clicking here on on the picture below.
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!
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 what seemed to me at the time, make me perform an almost impossible task! 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.
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!)
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 a surveillance check today – read more here.
But believe it or not, I am today the same weight I was following surgery. Don’t despair about losing weight through surgery, sometimes it puts you at a more healthier weight. Yes you can look poorly immediately after surgery but looking better normally returns even if the weight does not.
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 even if you are a small intestine NET patient.
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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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