Monday 11th September came around pretty quickly once I had the date. Unlike my previous operation I had the luxury of spending my last night before it at home free of any bowel preparation and simply nil by mouth from midnight. I had to report to the Marsden for 7.30am so one of my friends and I left home fairly early to make it on time.
After being signed in we were shown to my cubicle where once I had my temperature, blood pressures, height and weight taken, I was asked to change into my lovely theatre gown and socks.(!). Shortly after that I met my anaethetist for the first time. She went through what to expect and answered any questions I had. Towards the end of the conversation she took a call from my surgeon who was driving to work and struck in traffic, so I realised I had a little time yet to wait. Another reason for being even more grateful for my friend giving up her morning to support me.
Shortly after she left, the registrar for Mr Khan, Tim, came to see me. He talked us through the operation that they were going to perform later that morning. I had a slightly amended whipple’s operation planned (pancreaticduodenectomy). This is where the head of the pancreas is removed plus the duodenum (where my polyps were), the gall bladder and part of the bile duct. However I wouldn’t lose anymore of my stomach. As regards the liver resection, they were going to make a decision on whether that was needed during the operation.
He told me they expected the operation to last between 3 to 4 hours but that it might last a little longer because of scar tissue from my previous operation. We discussed that although there was a small risk that I could develop type 1 diabetes after the operation, the chances were only 1 in 10 or as Tim said “If you look at it the other way then there’s a 9 in 10 chance you won’t develop it!” I thought that was a good way to look at it. As I signed my consent form he told me I was 3rd on the list but that the 2nd operation planned looked like it wouldn’t happen, so it wouldn’t be too mouth longer to wait. He also took both my friend and Sister’s numbers to phone them to let them know when I was safely out of theatre.
A few minutes later we had a lovely surprise when Mr Rasheed and his team came to say hello. I’d been in touch with him earlier in the week and he said that he would come and see me. It was so good to see them all again. They are such a great team of people. Nikhil reassured me that I wouldn’t really feel the epidural I was due to have in the anaesthetic room before being put under general anaesthetic, because the anaethetist would use local anaesthetic before giving me the epidural. Last time round I was already asleep when they gave it to me so I felt quite anxious about it.
After that it wasn’t too long before the nurse came to say they were ready for me in theatre. She was really kind and let my friend walk down to the no entry sign with me which helped ease my nerves. Once in the anaethetist room, it wasn’t long before I was being set up with canulas and heart and blood pressure monitoring. I was amused to see that these both seemed quite regular until I was asked to sit up and get into position when the anaethetist entered the room. I had to swing my legs to one side of the bed and hug a pillow. At this point my heart rate raised quite a bit so I tried to concentrate on breathing normally. Fear of the unknown I guess.
However whilst not exactly being my favourite experience it was fine and it wasn’t long before I was lying on my back again and being put to sleep. The next thing I vaguely remember is being woken up in High Dependency unit (HDU). This is a step down from CCU, and it is standard procedure to be taken there after a whipple’s. To be honest the whole of my time up there is a complete blur. I would have been brought round early evening but I don’t remember much of that evening really, apart from various people around me looking after me.
I remember slightly more of Tuesday. I remember Tim coming to see me, and that he was really happy with the way the operation had gone. I also remember having a fantastic Australian nurse who was a lot of fun. One of my friends came to visit which was lovely and I remember being told that I would be kept up in HDU for a second night simply because of the amount of surgery I’d had in the last few months. At some point I was moved to my own room and another friend came to see me there. At that point I was aware of the pain and nausea but it was only during Tuesday night that I felt that the pain became unbearable so my nurse upped my morphine dose on my PCA.
By Wednesday lunchtime they were ready to move me to my ward. I’d really hoped I would be placed back on Ellis to see the nurses again but Wilson ward was the only one that had a bed available for me at that time. I must admit I had a minor strop. I’d so wanted to be back with the nurses I already knew on Ellis but it didn’t take me long to get over myself and accept that I’d receive fantastic care on Wilson too. Once down on the ward an hour or so later, I was safely settled in. The nurses couldn’t have been kinder and I warmed to them immediately. By this time I think I’d become aware that the operation had in fact lasted 7 hours due to the amount of scar tissue the surgeons had worked through to get to where they wanted. I also knew that they had decided that the liver resection wasn’t needed so that was a bonus too.
The next couple of days are pretty hazy. I had a few visits from lovely friends but I spent a lot of time sleeping. Although the pain was quite high I could manage it fairly easily with the PCA. If anything the nausea was worse. A side effect of morphine. Thursday night was a particularly bad one for that but the nurses were great and did all they could to aleave it. Eventually, I was changed onto a different drug which doesn’t carry that side effect, you just have more vivid dreams on them. I’d take that option right now.
A few friends popped in and out during those days, but most of the time was spent sleeping. I had a really nice student nurse who would help me wash each morning but even that was a real challenge. I had a lovely surprise early on Thursday morning when Mr Rasheed popped by to see how I was doing and he came back again on Friday afternoon with his team. I told him how sick I felt, and he reassured me that he understood and that all the drugs I was on were contributing to that feeling too, but it would pass. I also had a couple of visits from one of the amazing stoma nurses, Lesley, who had really helped me when I was learning how to use my stoma bags last time round and who I had grown really close to. People are so kind.
However on Friday afternoon, Carla, my nurse for the day told me that unfortunately, due to them suspecting I may have contracted a virus, I had to be moved to a private room for the rest of my stay. Whilst I would be fine when I got home, they obviously needed to play it safe and protect other pateints. I believe that it’s the kind of virus that is hard to combat with antibiotics and if pateints are already ill then it could be dangerous. As everyone who knows me, will testify, being cooped up in my own room wouldn’t be my first option, I understood. I just felt gutted that I had to be moved.
At the same time I felt so weak that I was beyond getting too upset. I wasn’t moved until late Friday night when the bed was finally ready for me. That night was probably my lowest in hospital. Whilst being transferred from my bed to the wheelchair my NG tube pretty much came out. This, if you remember, is the tube they use to drain excess bile and liquids produced by your body whilst the gut and bowel wakes up. It helps you to not be sick from it too. The tube is usually inserted, through your nose into your stomach, when you are under anaesthetic. I realised it would need to go back in again and of how much I hated it last time.
As we went up to my new room in the lift, I told my nurse how sorry I felt for myself. “that’s ok to feel that way though, isn’t it” she answered. I had a little cry and pulled myself together. Once settled in my room. My new nurse explained that we would have to reinsert the tube. To be fair, I managed it fairly well. However ironically, a few hours later, I woke up to find that it had somehow come out again! So about 2am she had to put it back in again. Thankfully it went pretty smoothly and I fell back to sleep.
Over the weekend I settled into life in a private room. I was still very tired so I slept most of the time. Not even having much energy to watch TV. A few friends came in to visit which really helped keep my spirits up and the nurses were of course as wonderful as ever. I connected particularly well with Jenny, my nurse on Sunday. She had time to sit and talk to me and help put the world to rights. The night before I met her, I spiked a temperature and so on Saturday evening I was taken down for a chest x-ray. Nothing really showed up but by Sunday when an advanced nurse specialist listened to my chest, it was clear I was quite wheezy. She asked me to try and cough it up which was difficult because it really hurt to do that. But she was right, that was the problem. I used a nebuliser for a little while which helped to fix it and my temperature returned to normal.
Over the next few days I began to perk up and in between visits from friends and sleep, I watched a little TV and met more nurses. The doctors were really pleased with my progress and it soon became of matter of time before the NG tube was removed. I was already on free fluids so this would mean that I could move onto a soft food diet. I was a little apprehensive because of my experience post NG removal last time round but at the same time I felt ready.
After my last operation I had to drink fortisup build up drinks to help add calories to my diet and I hated them because they were far too creamy but this time around there were scandi shakes available which were much more palatable. I was still being fed intravenously but the idea was to gradually wean me off that and I could be discharged as soon as the dietitian felt it was safe. On Wednesday afternoon, I was told that a private room had become available on my beloved Ellis so I was to be moved sometime on Thursday.
Although I was told I would be moved around midday it was about 5.30pm that I was finally able to move. Unfortunately this was during the dinner order run and that night my dinner somehow ended up with someone else! So I was left with egg mayonnaise sandwiches.. you can only smile. However it was so good to see the nurses again and whilst not wishing to see me under those circumstances, they were all really happy to have me back. It was great to see them again as I’d grown a little weary of meeting a new nurse almost every day.
The downside, was of course that I was cooped up in my room and en suite bathroom. I’d been able to go on little walks with the physiotherapist whilst on the private ward so I felt a little lonely. Of course friends continued to come in to see me and the nurses would come to chat to me on their breaks or when they had time so that really helped lift my spirits. Health wise I felt pretty well considering but I found it challenging to eat again. It felt like Groundhog Day. I wanted to eat more but nothing really tickled my fancy, even with food brought in by friends.
On Friday morning the doctor hinted that I might even get home over the weekend so I felt really excited. However by Friday afternoon the dietitian had confirmed I would infact be kept in. I was disappointed but realised it was for my own good and at least I was being looked after. It’s just that I longed for space and my own home again. Still, I was shattered and on Saturday I slept most of the day. Being required to eat when you don’t have any energy is so difficult and I felt quite anxious every time meal times came around. Nothing seemed to work. However I managed what I could and on Sunday the doctor on call noted that now I was eating more, they could take me off the TPN and so it looked more and more likely that I would go the next day. I was ecstatic.
Monday morning came round and Tim came to discharge me. He came back a little later with my surgeon Mr Khan who told me I’d done very well and that they would see me in clinic in a weeks time. A nurse took my staples from my wounds and after that all that was needed was to wait for my medications. These duly arrived and a cash taxi was ordered for me to take me home.
As I waited in reception for it to arrive I reflected on my 2 week stay in hospital. It had, at times been challenging but as always I’d been cared for so well. I couldn’t actually believe that in a little under 6 months I’d had 2 major operations. I still have one operation to go early in the new year but that is again preventative and won’t be on my gut or bowel. I felt proud of myself for getting through it all, although I felt very sore and absolutely shattered. I knew only too well that the hard work started now. But I’d done it once so I could do it again. I was ready to go home.