Another Day, Another Hospital Stay

The Progress of the Wound

I’ve spent so much time in hospitals over these past 12 months that I’m starting to consider myself somewhat an expert on them. Sure, the staff at a hospital spend much more time there than I ever could, but they aren’t then forced to sleep on the thin foam mattresses and eat the inexplicably disgusting food. When I go into the hospital, I really walk the walk. I throw up in the cardboard buckets, sulk in the side rooms and indulge in the various sizes of cannulas. Once, I had 3 separate cannulas in my two arms, yet the nurse still approached me and asked if she could put in another one. “What is wrong with the ones I already have in?” I asked. “They aren’t big enough for a blood transfusion,” she responded. I wondered how my veins were still managing to carry blood around my body at all. They were starting to resemble a Kerplunk tower.

My knowledge of hospitals is exactly what makes them so unappealing to me. The overbearing smell of the chemicals used to clean every surface. The solitude of the shared wards, where I am forever damned to being at least half the age of everyone else in the room. The excitement when a nurse or doctor shows up to talk to you about something, only for the conversation to last a mere 3 minutes; a momentary break in your daily routine of watching videos on Youtube, trying to sleep and staring at your own legs. A&E is even worse, though – a holding pen of drunk, miserable and desperate people, most willing to exaggerate, lie and even scream to get a 5-minute improvement in their overall wait time. Pair that with the average wait time being approximately 2 weeks and you get a pretty unappealing offering.

A&E is so unappealing in the UK right now that I spent 4 hours last Saturday night projectile vomiting and trying to withstand some of the worst abdominal pain I’ve ever felt just to avoid it. My theory was that it would all pass if I just waited another hour…

Another hour…

Just one more hour…

Eugh.

That theory never materialised and as I lay there on the sofa, keeled over in pain, I finally succumbed to the inevitable. At first, we tried to ring an ambulance to take me. The last time I required an ambulance was to be transferred from Leighton hospital to Manchester. During that journey, the ambulance crew encouraged me to ring an ambulance in future if I am in a lot of pain as they described my case as “more worthy than 99% of cases that we spend our lives attending to.” Encouraged by this advice, and in desperate need of some top-grade morphine, I called the ambulance service.

Unsurprisingly, they told me that I could wait, but it would be at least 4 hours. Who would have guessed that the ambulance service would be busy on a Saturday night? Perhaps I should have lied and told them that my chest and back were indeed hot, and that my stools were so black and tar-like that they turned the water in the toilet basin the colour of squid ink, but that isn’t the kind of person I am. I answered their list of questions as honestly and positively as possible, which got me exactly where it was always going to get me. Deprioritised. Rating your abdominal pain an 8 out of 10 and repeatedly projectile vomiting 2 months after major surgery is only worrying if your chest is also warm… You really do need to be on death’s door before they’ll take you seriously. My last ambulance crew told me that they spend their lives attending to low-priority calls about issues that barely require hospital attention, but maybe they were just liars.

My mum, Anna and I jumped into the car. Royal Stoke hospital is a 20-minute drive, so it isn’t too bad. It was the pain relief that I was so keen to get, and I knew that I wasn’t going to get it for hours if we walked into A&E. When you get an ambulance, you get it before you even make it to the hospital! It is a life of luxury in an ambulance – you’re given your own driver AND a separate paramedic who can prescribe you morphine; no wonder they’re so popular on Saturday nights. I crawled into the back of the car. My mum handed me a bucket, which was a good idea in hindsight, as 15 minutes into the journey I started throwing up again. The car stank for the last 5 minutes, but the bucket was then left in the back of the car, to my mother’s dismay as she returned to the car a few hours later. She then had to drive back to the house with the smell of stale sick lingering in the air.

Anna and I went straight into A&E whilst my mum negotiated the car park. One thing I will say about having a major operation and a history of pancreatic cancer is that you do get triaged very quickly. As the receptionist was handed my discharge notes from Manchester, which includes my original diagnosis of stage 3 pancreatic cancer, all of the gritty details of the operation, as well as the fact that I am now fully ‘insulin dependent’ (AKA Diabetic), she looked a little overwhelmed. We sat in the waiting room for no more than 10 minutes before I was called up. I was glad to be out of the waiting room – it was full of drunk, miserable people. I was also miserable, but the others were really miserable; there was wailing, shouting and some chaotic laughing coming from a man lying on a set of chairs who was occasionally shouting something at a man sitting across from him – I’m pretty sure he was being racist to the poor guy, but he could barely form a coherent word, so it was hard to really know.

The nurse took us into a bay and closed the curtain. As she asked me to explain what was happening, and I started making my way through the history of Dan’s cancer, I started to cry. At some point during my recital, a thought hit me like a freight train. I remembered watching an advert about cancer a few years ago where a woman described suddenly falling violently ill, projectile vomiting and not knowing why. A week later, she was diagnosed with cancer. I sat in the chair, bent forward and holding my abdomen. “It’s fucking spread, hasn’t it?” I said to Anna. Shortly after the nurse took us to a room and told me that I can’t be around the general population in case anyone passes something on to me. There we waited about 30 minutes for a bed and then we settled in. It was about 23:30.

It took around an hour or two for the nurse to put in a cannula, take bloods and give me a course of pain relief. Things slowed down after that. The nurse told us we were “going to be seen next” for a grand total of 5 hours. By the time a doctor finally came to speak to me, it was around 6:30 in the morning. After the pain relief had dampened my abdominal pain, I’d spent most of the time drifting in and out of sleep. Poor Anna and my mum were taking turns alternating between the two chairs in the room – one was actually a stall, so to sleep on it, they were having to lean their head forward and rest it on the bed. It didn’t look comfortable at all.

Luckily, when the doctor did eventually see me, she was extremely knowledgeable and diligent. She quickly went through my blood test results, telling me that my infection markers weren’t worryingly high but were raised. The plan was to do a CT scan at some point that morning. Unfortunately, the shift changeover was at 7:00am so after that brief interaction, we didn’t see her again. After a few more hours I was moved into another part of the hospital where I stayed for another few hours, before being admitted onto a ward. I really didn’t want to be admitted. In my experience, trying to get out of the hospital once you’ve been admitted is like trying to escape Alcatraz. The amount of procedures you have to fight through just to leave on the day you are discharged is crazy. You sit around waiting for the doctor to write the discharge notice, then you wait for the ward to process it, then you need a porter to ferry you to the discharge lounge where you have to wait for the Pharmacy to put together your medication, which has never taken less than 3 hours for me, then, finally, you’re allowed to leave. By this point, it is usually 20:00 in the evening and you’ve spent all day in purgatory, resisting eating any more hospital food because you know that soon you’ll be able to have real food from home, food that actually tastes of something.

So I went to a ward, then got moved to another ward and then went to do the CT scan. A few more scans were planned for Monday morning – the hospital needed to order some of the materials required to do the scan. The CT scan used a contrast dye which is pushed directly into your blood via the cannula which is connected to a line. The type which they couldn’t do was one where you drink a liquid before the scan, taking a cup of it every 15 minutes for an hour, and then you go into the scan. I believe the liquid you drink can be tracked as it makes its way through your body, allowing them to trace how things are moving through. Some of the details might be wrong there, but hopefully, you get the gist. The hospital didn’t have the liquid you need to drink prior to having the scan, so this is what we were waiting for.

The results of the CT scan showed that I had a blockage in my colon. One of the new joins in my digestive system had swelled up, I think, and it was causing my stomach to not empty properly. When my body realised it couldn’t digest food, it went into emergency mode and decided to fire it back out from where it came from. That seemed to explain why I’d had such a bad pain in my abdomen.

A downside to the next scan being Monday was that I wasn’t allowed to eat anything until after the scan. This wasn’t a problem Saturday night, with the taste of sick lingering in my nose and with me barely stomaching water alone. It was starting to become a problem by Sunday afternoon when I was actually feeling a lot better. My stomach was hurting but I was starting to get quite an appetite again. There was nothing to be done, though, so I settled into another night in a hospital.

A downside of being diabetic is that not eating can send your levels all over the place, especially if you’re ill. My body was not only fighting whatever was happening now, but it is also trying to recover from the surgery. The surgeon had warned me that this will likely be the case for 6 months and that my blood sugar levels will be difficult to control throughout this period. Between the illness, recovery from the operation and not eating, my blood sugars kept dropping to dangerously low levels.

For those of you who don’t know much about diabetes – the idea is to try and control your blood sugar levels in a similar way to how your body does when it is functioning properly. You inject insulin to stop your blood sugar from spiking when you eat and to bring it down, and if your blood sugar gets too low, you urgently take on sugar to bring it back into a safe tolerance. By ‘take on sugar’, I mean that you drink something sugary like fruit juice or Coke. You can also eat sweets that are all sugar, but anything that also has other nutritional content, like chocolate bars, which also contain fat, will take longer to digest. That means a slower increase in your blood sugar, which could be dangerous. Your blood sugars can be high without it being dangerous on a short-term basis, so it isn’t too concerning if they are slightly elevated. Low blood sugars can be very dangerous, though, and can result in an individual passing out, with the risk of falling into a coma.

Another downside of being diabetic and being an inpatient in a hospital is that nurses, in general, do not seem to know how to manage it at all. That night, the nurse came to take a reading from me. It stated that my blood sugar was at 2.7, which is low. The ideal range is between 4 and 7, but I consider anything up to 10 as Ok. The reason it had got so low is that my Continuous Glucose Monitor (CGM), the device which is attached to my arm and continuously sends readings to my phone, tends to record around 2 points higher than my blood sugar level when tested. It isn’t always that different, but when the blood sugar levels are changing frequently, as they were that night, it tends to be more inaccurate. That meant that I thought my blood sugar levels were around 4.7, which is fine, but in reality, they were lower than this. As I had recorded low blood sugar levels, the nurse had to put me on a sliding scale.

Now, I repeatedly told her that I’d rather manage it myself and that my body will be very susceptible to insulin when my levels are being so volatile, but that couldn’t supersede the ‘process’. If your blood sugars are recorded as low, the staff have to ‘take control’ the nurse told me. The problem is that most of the nursing staff don’t seem to understand how to control a diabetics levels. I heard the nurse repeatedly asking another nurse how a sliding scale works, what she should be doing with it etc. I wasn’t particularly happy that this person was in charge of it.

A sliding scale is a machine which is hooked up to the cannula and monitors your blood sugar levels. The nurse can tell it to give you a certain amount of insulin per hour, which is what this nurse did. The problem is that my level was randomly dropping without much warning, so why would I want to introduce more insulin into my body at this time? I said this to her, but she told me that they had it under control. Of course, that night, I had 3 hypos where I urgently had to eat glucose gel to get my levels raised again. Eventually, the nurse listened to my pleas to stop leaking insulin into my body and changed the amount of insulin being issued to 0. This was happening throughout the night as I was trying to sleep. I genuinely lay there terrified that these nurses were going to kill me if they didn’t listen to me and stop what they were doing. It is incredibly frustrating.

Going into the hospital as a diabetic is genuinely scary – you really see the lack of fundamental knowledge in the area. You are constantly given things like orange juice with your meals, there is no indication of how many carbohydrates are in a meal, which would help you inject the right amount of insulin for what you eat, and the nurses frequently seem bewildered by what to do with you as they routinely check your levels. I don’t blame the individuals, but something really isn’t working in this area of care. You’re far better off at home where you can eat healthier and be responsible for controlling your own blood sugar levels.

The next morning, the surgical team came and spoke to me. “You seem well,” the head surgeon said as he approached me. “Yeah, I feel fine now. I’m just starving,” I retorted. “Well let’s cancel the scans, let you eat and get you discharged then,” he said, to my surprise. He explained that these types of blockages usually clear themselves up and then the subject is fine. I was sceptical but I accepted what he said – he knows better than I do, and I was feeling much better now. That was that. A few hours later I was let out (I did not have to pick up any medication to be discharged with so I missed the pharmacy debacle, which was a relief).

My problem since leaving the hospital has been that some of the issues haven’t gone away. It isn’t comforting to be released from the hospital with nothing – no antibiotics, no advice on what to do next time, or what not to do to help prevent it from happening again, nothing. For the first few days at home, I did feel better, mostly. Since Wednesday, I’ve started getting this heavy feeling in my stomach and lower abdomen again. When I try to eat as much as I feel I want to in order to satisfy my hunger, I start feeling incredibly sick. The whole thing has left me feeling lost, and I’ve just reduced the amount I’m eating by a lot. I feel hungry all of the time, yet still a little bit sick. It is exhausting. As a result, my blood sugar levels are also all over the place. I seem to have at least 1 hypo every night, where my blood sugar drops too low and I have to have a glucose gel. Luckily, when my phone records a low reading, an alarm goes off. If I didn’t have this, I probably just wouldn’t be sleeping out of fear that I wouldn’t wake up.

All of this is worsened by the fact that my wedding is on Friday, so I am extremely nervous that I may have another episode around then, which would ruin the entire day. There are so many growing pains with everything going on – the diabetes, recovering from the surgery and, now, mentally preparing myself for the next bout of chemotherapy. Sometimes you wish life would just give you a break. I really need it right now.

Home Again With Little Lucy

Cancer Free (Sturm und Drang)

The Road to Recovery

The Day After the Operation – Tubes Everywhere

I want to start this post with an apology in case I repeat anything I have written in my previous two posts. Surprisingly, two weeks of opioids and painkillers aren’t conducive to a well-formed memory. “Why don’t you go back and read the posts then, Dan?” you may ask. I don’t waste my time reading such drivel; I leave that to my poor readers. On a more serious note, there’s something about not remembering what I said which makes me nervous about going back. They were also written when I was in a dark place – getting very little sleep on the ward and struggling to adjust to a new life, one of diabetes and fighting back from major surgery… a fight which is still hamstringing me now. I have been pleasantly surprised by the number of views the blog has been getting in my absence, though. A few days ago I looked at the figures, and it had received 160 views that day. Not too bad considering I’ve fallen off the face of the earth over the past month!

It is funny that before the surgery I claimed I’d be offline for a fortnight or so. Technically, I wasn’t wrong. There have been posts since the surgery. I really did believe I would be back to full activity after two weeks… a laughable claim, really. Turns out that it isn’t quite so easy recovering from a 13-hour surgery. In my defence, I was starkly warned that a full removal was very unlikely. The fact that you could have your entire pancreas removed was actually news to me, news that I would only properly understand about a week after the operation. I’d been told many times during that first week what had happened, and probably even regurgitated the words to some unsuspecting nurses who were just trying to clean my wounds, or even to another patient in a bed next to mine, perhaps. “How are you feeling today, Daniel?” They’d ask. “Well, I’ve had my entire pancreas removed and don’t know if I still have cancer or not.” That’s one way to kill a conversation. I don’t remember such a conversation, but I know myself well enough to know that I would have told anyone who came within 6 feet of me what had happened.

The First Time I Managed to Walk Outside – About 5 Days After Surgery

The meaning of the words only landed about a week later for me, though. I’d been sitting there at night struggling to sleep when suddenly I started saying to myself, “wait, my entire pancreas was removed? Is that even possible?” The fact that I was now fully diabetic hadn’t occurred to me yet as I was attached to a machine which measured my blood sugar every hour and administered insulin to balance it out. Essentially, the machine was acting as the pancreas I had lost. The machine wasn’t leaving the hospital with me, though. That reality wouldn’t dawn on me for yet another week, when I finally got taken off the machines and had to deal with it head-on. Unfortunately, my first stint as a free man after being discharged from the hospital was short-lived.

I first got out of the hospital about 10 days post-surgery. Though I was incredibly happy to be out of the hospital and back in the comfort of my own home, the relief didn’t last long. That night, as I went to lie down in my bed for the first time, I felt a wave of sickness come over me. After several more attempts to lay flat, I realised that it was the act of laying down that was the catalyst. As soon as I lay back, it felt like my stomach was sitting in my mouth. I’d barely slept in the hospital and felt like I was suffering from a form of PTSD, which I probably was, I think. During those 10 days in the hospital, I felt like I had developed an extremely unhealthy association with sleep – one of me twisting and turning in a hospital bed with tubes coming out of every part of me. Some nights I’d sat there crying whilst 3 nurses tried to console me. “How much more can I give? I don’t even understand if I’ve got rid of the cancer and even if I have, it’ll just come back anyway.” I was inconsolable on several occasions. The nurses sometimes seemed confused, as if what had happened to me was a miracle. Maybe it is. I’m still trying to decide. I don’t think they quite understood what road I have ahead of me still, though, even if it is incredible what was achieved during the surgery.

That isn’t to say that I’m not incredibly grateful to the surgeon for what he did. I’ve since had the histology results from the operation. This is where the lab analyses all of the things taken out during the operation and determines how successful it was. They do this by analysing whether good margins were achieved – i.e. whether they have taken all of the infected areas out of the body, with the inclusion of a margin, assuring that any lingering cancer cells should also have been removed. After analysing the samples from my operation, they determined that good margins were achieved and that the whole tumour has been removed. That is amazing news, of course. It was confirmed that I did indeed have pancreatic cancer, and they now believe that the cancer formed because of a cyst which had grown on the pancreas, allowing the tumour to then take hold. Two-thirds of my large bowel was also removed, as well as the bile duct, spleen and some of the stomach. Forty-five lymph nodes were removed, with two of them testing positive for infection in the lab. On top of all of this, I also had two major arteries reconstructed. The reconstruction of these arteries is why the large bowel had to be removed – something to do with the blood flow meant that the bowel had to be taken out. The lab confirmed that there was no cancer found during the testing of the bowel, which is encouraging.

All of this is very good news. The problem is that pancreatic cancer is extremely aggressive. Although I may be cancer free for now, in terms of having no tumours visible on a scan, it does not mean that new tumours won’t form or haven’t started forming in other organs. I’m entering a period of 5 years where I have to ‘Live With Cancer’, as the surgeon put it. That’s Ok, but it still takes some adjusting to. It feels like being in a strange limbo where I know I am extremely lucky to be here but also struggle to feel contented in it at all times.

Taken During My 12 Hours at Home, Before Returning to Hospital

Anyway, back to the hospital story. The next morning, after throwing up all night and getting hardly any sleep, I made my way to the nearest A&E on the advice of the non-emergency contact line 111. There I was put on a drip and left in a room with my mum for hours. Eventually, the surgical team came to see me and asked what operation I’d had. When I told them, they barely believed me. It turns out that getting extensive surgery isn’t that common, especially when you’re in your 20’s. She immediately set out on a path of getting me transferred back to Manchester hospital where I’d had the procedure, so she did not have to deal with this absolute mess of a patient. I was happy – I absolutely hate this hospital. I’m sure I’ve spoken about it by name on the blog before, but I’m going to keep it under wraps today so no one can accuse me of being a ‘hater’. I will give you some clues – it is located in Crewe and its name rhymes with ‘Clayton’… I’m sure you’ll never work it out.

My second stint in the hospital lasted 7 days and was pretty painful. This time around I experienced several uncomfortable situations. I had a pipe pushed up my nose and into my stomach to help remove excess liquid from the digestive tract. I had a catheter put in when I was fully awake – the first time I had one put in was during the operation when I was out cold, which was much more convenient. Then, I sat and watched as the wound on my abdomen started to leak so much blood that I needed two blood transfusions. And finally, I got put on a ward where my bed was directly in front of the toilet, and I got to sit watching as everyone on the ward made their way in and out of the toilet – what a joy to see (and smell).

Extracting Stomach Fluid – Not My Best Angle

I won’t bore you with all of the minute details of my hellish experiences in hospital over those 2 stints, but there are a few things which feel worth discussing. Firstly, the severe bleeding from the wound. The surgeons were incredibly worried about it as they thought it might have been one of the reconstructed arteries leaking. I was rushed to the CT area for an emergency scan. After having the scan, 3 senior surgeons rushed into the room and asked the clerks to give us a few minutes alone. The head surgeon approached me, staring me dead in the eyes. He put his hand on my arm and started speaking to me in a very serious tone. “Look at me – how do you feel? Not mentally but physically? Only you can know if you are feeling unusual and we may have to make some critical decisions over the next few hours.” If I wasn’t worried at the sight of blood pouring out of the wound, I was worried now. They told me that I may need emergency surgery that night, depending on what the results of the scan said. Luckily, that didn’t happen. It turns out that the skin was bleeding and that blood was building up under the wound. Two cavities had then opened up on either side of my stomach, and the buildup of blood was leaking out of them. It wasn’t pretty. They’re still healing to this day. Nurses come to my house every day to take pictures, pack the wounds with fresh material and then change the bandages. The wounds need to be packed to prevent them from healing too quickly. When this happens, the top layer of skin heals quicker than the inside of the cavity, allowing a pocket under the skin to form where infections can build up. It is all pretty gross. I have to say, watching someone use a little plastic stick to push a piece of material into your abdomen is pretty uncomfortable. One of the cavities is 3cm deep… gross.

Now, the blood transfusions. There are a few things about blood transfusions that are creepy. The most obvious one is the fact that someone else’s blood is being pushed into your veins, and you are sitting there watching it happen. It is an amazing thing, of course, but that doesn’t make it any less creepy a concept. I sat wondering who’s blood I was being blessed with. Maybe I’d start liking different things or having someone else’s memories come the morning. Maybe they were much smarter than me and had big business ideas harboured in their mind which they were now passing on to me. Or maybe they have some sort of disease that wasn’t picked up in whatever screening they do before they let someone give blood. That probably won’t happen, although I did read a few articles about people seeking compensation for that exact thing happening when I was in hospital… Just put it to the back of your mind, it probably won’t happen to you. It didn’t – as far as I know. I haven’t had any big, out-of-character business ideas either.

The other thing that is disconcerting about a blood transfusion is that the bags of blood are kept very cold to stop the blood going off. Not only were they very cold, but they were being infused into my veins over a period of 3.5 hours, and I needed 2 bags. That meant I had to sit there for 7 hours whilst this blood transfusion was going on. Due to the temperature, you can feel the blood going into you, and it gives you these strange chills. My body was occasionally shivering because it was making me so cold, and they didn’t start them until 23:30 at night, so it was happening through the entire night. I hardly slept during my hospital stay anyway, so it didn’t affect my sleep, but it made for a very uncomfortable night. I put my headphones in and tried to relax, but the nurses were coming to prick my finger every hour to check my blood sugars, so relaxing wasn’t that high on the agenda. I also still had the catheter in and every time I moved, I felt the tube pull. As a result, I lay there trying to be as still as possible, shivering and wondering how close to the next finger prick I was. If your life really does flash before your eyes when you die, this is my request to my life to leave these memories out – I’d rather not relive them, thank you.

There is so much more to talk about – the recovery since leaving the hospital, how I’m feeling now, the next steps, dealing with diabetes. I can’t fit it all into one post and considering it has taken me 3 days to even write this, I don’t really have the energy. I’m hoping to get back to posting regularly, but it may only be once a week for a while. Recovering from major surgery really is tough – I feel proud of myself when I manage to eat a full meal without heaving or manage to get through an entire afternoon without accidentally falling asleep for 3 hours on the sofa. My energy is at an all time low and I just feel completely zapped. Things have gotten better over the past few weeks since leaving the hospital, but every time I take a step forward in one department, it feels like another one pulls me back.

Last night, as I was preparing to get in bed, I started feeling extremely itchy all over my body. After inspecting my skin a little closer, I realised that I had a rash forming all over my body. It has been causing me problems ever since. It is the most recent example of life seeming to enjoy kicking me while I’m down. It means that I should have plenty to write about over the next few weeks, though, so that’s something. I’m sorry for going missing for so long and thank you to everyone who has reached out on the blog and beyond. I’m absolutely terrible at answering at the minute, so please don’t be offended if I haven’t gotten back to you. I will make my way through the comments on the blog soon, I promise.

Thanks for sticking with me and I promise there will be a steady stream of content coming over the next few weeks. I’ve got loads of complaining to do!