I will break this section down by dates so to see what happened chronologically, thankfully my wife kept notes from things I said to her and things she was told by the nursing team, so I can paint a picture of what happened during my stay. I will also use my operation letter to cover details about my operation.
2nd September arrived; I had my packed suitcase with me, containing clothes, wash bag, books, and iPod, basically everything I could think of that I would need in hospital. First thing I will say is the NHS to get me seen quicker, had put me through the private Hampshire Clinic hospital in Basingstoke for my treatment and stay, I am so very lucky this happened and I feel this really helped me find the stay ok.
Anywho, first stop this day was in the main hospital for a current CT scan (as they needed a scan less than 6 weeks old for the operation) this involved drinking an iodine water an hour before the actual scan, which wasn’t the nicest drink in the world, but also not the worst. My wife waited in the car for me as she wasn’t allowed in, because when I was out of the main hospital, she then had to drive me along to the Hampshire Clinic.
Here the start was not good as we had to have an unceremonious goodbye outside the clinic, we weren’t sure if my wife would be allowed in with me to help me settle into my room, however she was not allowed even into reception. As I had to get in it to the clinic to start all the preparation for my operation, it felt like we had a rushed goodbye, both standing outside crying as we said our goodbyes, for me personally this was one of the first times that the operation side of things really sunk in, I was here ready to go and a thought did cross my mind of what if this is the last time I see my wife (the logical part of my brain tried reminding me it was a very small risk of dying in the operation, but it still got to me), either I am really slow at processing information, or really good at blocking things out until the last minute, probably a combination of the two. After the goodbye my wife went back to the car trying to compose herself to drive home and I went into reception trying to compose myself and get ready for the preparation for the operation.
From reception I was taken up to my room, where I would only be staying that one night for my preparation, once out of intensive care I would end up in a different room. In this room I was visited firstly by the nursing staff to carry out their ob’s on me, then weigh me and measure my height to pass on the details to the anaesthetist so they could hit me with the right amount of anaesthetic the following day. I also had a variety of different swabs taken to check for MRSA before the operation. Then I was given jug one (of what would be two jugs) of laxative mixture to help me prepare for the operation, I am so glad I had my own en-suite as I wouldn’t have fancied sharing a bathroom for this experience.
During the rest of the afternoon I was visited by the head nurse who explained the operation procedure again to me, and who then drew on me with marker pen just in case the surgery did not go as planned and I needed a stoma bag, at least the surgeons would know where to put the bag. After this the anaesthetist, the surgeon, a nutritionist and finally another doctor to discuss any medicines I had taken recently/regularly.
The rest of my first evening in hospital was spent having fun with the bowel prep (getting jug 2) and I was also allowed clear liquid foods, so I had some soup and jelly. Then just sat watching TV to distract myself until I felt it was a suitable time to try and get to sleep. It was around this time I was advised that I could not drink any water after 2am in the morning ahead of my operation and that I would be woken up at 6am to allow me time to shower and get ready for the operation.
3rd September woken up at 6am, so had a shower & brushed teeth, the usual things you do to start a day, then got into my gown and put on the compression stockings ready for my operation and a nurse came to put tape around my wedding ring. I then made sure my suitcase was packed up as this would go into a secure storage location to meet me in my next room, then packed bits into my wash bag which would meet me in intensive care (I was advised to put my phone and charger in here so I could have them when I felt ready). Looking back over text messages with my wife, I think was I wheeled off to theatre just after 08:10 as that is the last time I messaged her. Once in the theatre preparation area, I had a cannula put in, anaesthetic administered and that is the last thing I remember.
Looking at my wife’s notes for the day, she called at 5pm and was advised the operation had gone well. She then called again at 8pm and was advised that I did not need a stoma bag and I had needed 3 pints of blood during the operation.
As I came round from the operation in intensive care, I cannot really remember much, other than not enjoying being moved around as the nursing team put a metal plate underneath me to take an x-ray of my operation site, I definitely made groaning sounds due to pain and coming round. The only other thing I remember is a nurse saying she was going to call my wife and is there anything I wanted to say to her, which was “tell her I’m ok and that I love her”. I have no idea what time this was or how soon after the operation it was.
Again looking back over texts I messaged my wife around 20:15 briefly to say hi and messaged family and close friends with a thumb up emoji, but that was me finished with communicating for the day. My wife had been updating people throughout the day on my progress, so they didn’t need anything explaining to them.
Now using the operation letter to explain the operation, my haemoglobin levels had dropped from 10 from the blood test I had had on my first visit to Basingstoke to 6 on arrival for the operation, which is why I was given the blood during the operation. The CT scan carried out the day before showed that the tumour had grown again in size and that a lot of lymph nodes were visible on the scan as well, so all in all, not good. The tumour was removed from the right side of my abdominal wall first of all. Then as it was invading the perinephric fat, that area was resected to preserve my kidney. Next up some of the disease was up against the liver, but hadn’t invaded the liver as such, so they diathermied the small amount of disease on the capsule of my liver.
They noted some large lymph nodes on my ilecocolic chain and some smaller ones beside the inferior vena cava on the right side. My right colon and greater omentum were then resected before I was then treated with the 43 Celsius chemotherapy in my abdomen for 1 hour as a flush through to get rid of any loose bits of tumour and I was closed up. The final note really from the letter is the surgeon was delighted that they were able to remove the whole tumour.
4th September I had been in a lot of pain and discomfort overnight and hadn’t really slept very well, it also occurred to me I had a lot of tubes in me, and I was conscious about upsetting them (lots of tubes in my neck for different things, but also a catheter, a tube in my back which I think was to do with pain management, oxygen tube in my nose, another tube from my nose going down to my stomach and some drains in my left side). Apparently I was asleep when my wife phoned intensive care to see how I was doing. I do however remember briefly seeing the surgeon in the morning where he gave me a rough overview of the operation and advised that the reason I had been having the issues I’d mentioned to him about stabbing pains and feeling sick etc was because the tumour had grown again, he was surprised I’d been able to eat as much as I did, as it was causing a blockage.
In the afternoon I had my first physio session, where with support I managed to get out of bed and stand up. After this I think I largely slept and rested for the rest of the day.
5th September I reported to my wife I had vivid dreams overnight, from memory I think this was me being at a party for my Grandad (who had passed away a few years earlier) but I was talking to him. I was now also able to better manage my pain and was getting used to pressing the little button that gave me the pain relief. Today’s physio was again standing up out of bed and this time sitting in the chair by the bed for a little bit. I also got to experience my first hospital bed wash from the nursing team and then being redressed with another gown, to be honest all inhibitions have to go out the window here and you just have to embrace this part of the recovery, they’ve seen it all before, just odd not being able to wash yourself. Today I also had my drains removed, not to put anyone off, but it was horrible and painful, I was given a breathing drug which is given to women giving birth, which slightly reduced the discomfort, but feeling things being pulled out of my side was yucky, it definitely made my eyes water.
The highlight of the day was my wife was allowed to visit me in intensive care as there was only one other bed being used, plus we were also in our own areas so it was safe to have visitors, so I got to see her. We did talk a bit, but then I did begin to drift off a bit after a while as I felt tired. But it was just nice to hold her hand again and know she was there. Again using my wife’s notes, she saw me for just over two hours and she noted I was a bit silly from the pain medication when she spoke to me. I was also allowed an ice lolly which was probably the best ice lolly I’ve ever had, as at this stage I was just allowed water.
Side note, I had to ask the nurse before I went to sleep in the evening for anti-sickness tablets, as when I closed my eyes the room was spinning with bright lights, so the pain meds were really affecting me.
6th September who knew this would be a big moment in life, but at the age of 33 I was able to have a little poo in a bedpan at about 3:30am, this lead to having the experience of then having a nurse wipe my bottom for me and clean up for me, as with the bed wash from the day before, I just had to embrace this as part of the recovery. At 6am I then passed wind, this was all good as it meant my bodily functions were working after the operation and that the resections had worked. The surgeon saw me and was really happy with my progress, so I was going to be taken onto the main ward and put in another en-suite room.
Also on this day with physio I managed to walk with support from the physio and a nurse from my bed, across the small room of the intensive care ward and back again, so progress was good and that’s what I wanted.
7th September in my own room now and my catheter came out today, so I am now able to go to the toilet in the en-suite to my room (but at this stage have to ask for a nurse to help me there). Also went walking around some corridors on the ward, my wife came to visit me and saw me finishing my walk. I still had a lot of tubes in me at this stage including a tube for nutrients; however I was now allowed to have things like ice cream, jelly and coffee. Having my own room was a huge benefit for having my wife to visit me, as it meant she could stay a little longer than an hour (as dictated by covid) because she was only in my room and not coming into contact with other patients.
Now in my own room, I started getting into a daily routine, of snoozing before physio in the afternoon, I would either stick a podcast on to listen to, but not be worried if I fell asleep during it, or put afternoon game shows on the TV, so if I was awake with my eyes resting I could play along to the questions in my head, or again fall asleep to it and not be fussed either way.
Final update with the en-suite, I could have a shower now rather than a bed bath, however with all the tubes in me still I needed a nurse to help me wash and then dry, again it is something I just had to embrace, even though in my head I thought I am 33, I should be able to shower myself. And because the catheter was now out, I could put my boxers on underneath my hospital gown, woohoo!!
8th September again using the notes my wife made I was in pain a bit overnight, but after pressing my pain release buzzer was able to sleep again (that buzzer was seriously good fun). I was also allowed rice krispies for breakfast which was nice, slowly getting back to some form of eating. I then got chicken soup for lunch, dinner was mash potato and gravy.
Physio today was walking and going to use the exercise bars (am) in the hospital, when home I can do the exercises by using a chair to rest on. PM physio was a little more walking and using the steps to just step up and down.
And the big news today, I no longer had to buzz for a nurse to help me move around my room and to the toilet, so overnight I could move on my own.
9th September my wife visited me again and got to see me eat my first solid meal, it was a small chicken pie which was lovely. I couldn’t finish all of my dinner that evening, however it is a case of building my appetite up slowly again, and that will be the case when I get home. I was now also only being visited by the physio once a day, so was doing physio myself in the afternoon by walking around and using the bars (while still taking my stand with me as I still had tubes in my neck).
10th September was a big day, the tubes came out of my neck, I was now free from tubes and the stand, so I didn’t have to wheel anything around with me as I walked around. This also means that from tomorrow I’ll be even more independent and be allowed to shower on my own, just a nurse will be in my room in case I need to ask for help. Once the neck tubes were removed I had to lie down flat and still for an hour, so thankfully afternoon quizzes were on for me to answer. Also no tubes meant I could now wear my own clothes, another big milestone to feel a bit more normal.
I did however struggle with eating dinner this day, it was spaghetti hoops on toast, but I just found it too much. A gentle reminder that recovery is going to take a while. After that I went to watch an episode of House of Games, I saw the introduction and woke up to see the end credits, definitely got the impression my body is reminding me I am not indestructible. And now the tubes were out I started having injections in my legs to prevent blood clots.
11th September now I no longer have the tubes, painkillers are given to me as paracetamol or a liquid morphine, and it was getting used to a new discomfort I had not experienced due to always having pain relief on a button. My wife visited me again today as well, it is always good to see her, just I am aware I feel like a pain she has to drive 45 minutes to see me and then the same time home again. I did also feel a little discomfort in my side, the doctors checked me out and couldn’t see any signs of anything wrong, but kept an eye on me. Physio was done by myself over the weekend, so I went out and about in my own time.
12th September this was a horrible day, I hadn’t been able to go to the toilet (number 2) the previous day, but finally went once in the morning today. However the afternoon I went another 5 times, anything I ate felt like it went through me and was coming out like liquid, honestly I felt rough. The nurses assured me that unfortunately this can happen as my body corrects itself from surgery and they didn’t want to give me any medication, because that could easily send me the other way. I spent the afternoon and evening mostly lying in bed just feeling really sorry for myself and was pretty miserable, it was a tough day both physically and mentally that day, I definitely remember having a cry to myself.
Final side note to this day, I had to do the injection in my leg myself, as I would be sent home with some of these.
13th September had a dry breakfast to see if I wouldn’t need to rush straight to the toilet, thankfully I didn’t, yay. The surgeon also came to see me with the head nurse about my bowel movements the previous day and explained that because so much of my bowel had been removed, my body was trying to get used to having a shorter distance to move things from A to B, so if it suddenly forgot there was a shorter distance I could get days like the previous day, apparently things could be erratic for several months. Again my wife came to visit me which was great and she brought along a little homemade card to cheer me up.
I also got a visit from the chemist today, as they prepared to send me home with a bag of goodies to go home with, 30 days worth of injections, a sharps bin to go with these, paracetamol, anti-sickness tablets should I need them (I’d not been having them for a few days in hospital, so hope to be ok), 28 days worth of tablets to protect my stomach and finally the liquid painkiller. I also didn’t have a visit from the physio, so was doing that on my own.
14th September today things were ramping up for me to head home, in the morning I received a visit from the physio and we walked up and down a set of stairs in the hospital, this lead to me being signed off from physio as they were happy I could move around home without assistance. In the afternoon the nurse from the main hospital saw me about discharge, giving me a folder of information and advising me that I would receive calls a week after discharge, 6 weeks and then 3 months. Whilst the nurse was with me, the surgeon visited me to check on how I was doing and was satisfied that I could be discharged the following day, so I messaged my wife who was planning to visit me then anyway, to see if she fancied taking me home with her, she replied simply “No” (so I knew that was really a yes). To complete my day, the first half of my staples were removed from the operation site.
15th September discharge day, got everything packed and ready to go for when my wife arrived (alas she would have to carry all my bags). Before I left I had the second half of my staples removed and then I was on my way home.
