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!

A Bump in the Road to Surgery

The Road to Recovery

The Last Supper – 05.07.22

Nothing is straightforward with cancer. I was driving in my car with my brother Alfie this morning when I got a call from an ‘0161’ number… Manchester’s area code. “Oh no. That’s probably the hospital calling,” I said to my brother. My jaw was already tensing up. What is this going to be… My surgery was scheduled for 7:15am on Friday 8th July – tomorrow morning.

I answered it on the hands-free system in the car and immediately recognised the voice to be that of the surgeon. My brother was sitting next to me and could hear everything as we drove down the dual-carriageway heading to the shops to pick up an online order. I always find it hard to recall the exact wording of conversations, especially ones which give me so much anxiety that I worry my stomach may pop out of my mouth. I’ve spoken to my brother about the exact wording a few times since and have landed on what I think is an accurate account of it.

After the usual pleasantries, I approximate the first sentence from the surgeon’s mouth to be this: “We’ve been reviewing your case this morning and we have some unfortunate news… your surgery can not go ahead this Friday,” he said. The brain has an amazing capability to run a million scenarios in a millisecond when it concerns something of high severity. My life is ultimately in the balance here, so I’d consider this to be of pretty high severity with regards to how important it is to me. In that split second that he paused, I had concluded that they had finally reviewed my more recent scans, that they had seen a spread, or determined something was worse than they originally thought, and that I was now destined to die within a week (the last part may be a slight exaggeration).

“There is a national shortage of the NanoKnife needles. We can’t get any in time for the surgery tomorrow. We’re looking to move your surgery to next Friday,” he continued. He was really apologetic. At one point, he even said “I know you will have been looking forward to the surgery, and I was looking forward to it too.” I can’t remember what my response was to this, but it has made me laugh a lot since. I love the idea of my surgeon sitting at home, excitedly reviewing his calendar for all of the different surgeries that he has going on that week. Upon seeing his next Whipple, the procedure I may be having, he gets giddy and says to himself “Yes! I get to do a Whipple on Friday! 10 hours of surgery to kick off the weekend! Woohoo!” He carries himself in such a professional manner in real life – I think that’s what makes the image so funny… and the fact that he described himself as ‘excited’ for the operation, of course. I’m sure that he was looking forward to it for the life-saving potential that the operation could present for a fellow human-being, but it is more fun to pretend that he was looking forward to it because he just loves scalping away at people’s organs. It sounds quite sinister when put like that.

Sinister seems to be an accurate description of the pancreas more generally. Ali Stunt, the CEO of Pancratic Cancer Action, told me that surgeons need a lot of experience before being allowed to operate on the pancreas. Her reasoning for this was that the pancreas is a fleshy, buttery texture, which makes it awkward to operate on. It also has a major artery around it, the one which my tumour has befriended and continuously hugs (to my dismay). As if all that wasn’t enough, it is also in a really awkward place to access during surgery, sitting behind other organs. The head of the pancreas is in a particularly awkward place so, of course, that is where my tumour decided to set up camp.

Ali then described it as a ‘weird’ organ. After hearing what she had to say about it, I thought it was a bit of an understatement. I decided in my head that I hate the pancreas even more than I did before. Not only is it a spiteful bastard, which once inhibited by a tumour stops you from digesting fat or regulating your bloodsugar levels properly, but it is also a creepy texture. Sinister. Creepy. Spiteful. All words that I hope no one ever uses to describe me, and I’m sure you hope no one uses to describe you either.

Most people probably don’t think about what their pancreas is up to even once a year; I wonder if mine is bothering to do anything about once every 5 minutes. I constantly have to assess my own stools to determine whether they are floating or beached, both indications that my body hasn’t absorbed the oil from the food. It is all very undignified. If they are either of those things, I have to think back to what I had eaten the day before and how much of my Creon supplement I had alongside it. I then have to increase it the next time that I eat that food, or something similar. Nothing makes food more enjoyable than constantly wondering how much fat is in it, how many Creon that fat translates into, and whether it’ll be enough to make my stools not float the next day. Perhaps I should start talking about this in detail every time I am eating, with everyone sat in close proximity to me. That’s one way to get yourself scratched off the invite list to every dinner party that you may have been invited to that year. I’d probably still get invited until after my wedding at least – no one wants to start a tit-for-tat invite war when there is a wedding on the horizon… it makes far more sense to stop speaking after they’ve drained me of all the food, booze and good times that they can; before the cancer potentially gets too serious and they have to ‘be there for me’.

Anyway… the surgery has been moved to next Friday, July 15th. It was a relief to hear that there wasn’t any bad news about my cancer spreading or surgery not being a possibility, but it was hard to calm down from the tense, anxious-filled state that I had found myself in since Wednesday morning.

Tuesday evening was the final plan I had before surgery. Me and some of my good friends went out for a meal at a local Italian restaurant. The table was set out awkwardly, making it feel a little like The Last Supper. I’m not suggesting that I am Jesus here, but I guess I would be in these circumstances. That means that someone in attendance was the snake who gave me cancer, if I am remembering and applying the story accurately. I’m probably not.

It was a lovely evening and we all laughed a lot. That night, I struggled to sleep. It was all over; nowhere left to hide. The next thing in my calendar on my phone read ‘Operation Day’. Finally it was coming, but I had another 48 hours to wait before it would. If I could have sold away those 48 hours until I was laying on that operating table and counting down from 10, I would have. All I wanted was to be knocked out. Every minute until then felt like torture if I gave myself enough time to think about it. I was trying to keep myself busy with work, baking and relaxing with family, but it was getting harder. Surgery was on my mind and my mind was on surgery.

Backing down from that place today was hard on me mentally. The tenseness did not go for a few hours. I needed to amp myself up as the surgery was approaching faster. Now I had to deflate myself again. The surgeon knew that, I’m sure. That is probably why he was so apologetic on the phone. It seemed very sincere. Now, I have to reset the clock in my mind. Another 7 days which I need to fill with more plans to distract from the surgery… I’m sure I can have a good go at that. The thought occurred to me that it is another 7 days where my cancer may spread, unabated by any treatment. I’m getting better at fighting those thoughts, but they still come sometimes. Worrying about it spreading won’t make it any less likely to happen, though, and I’m sure the risk of that happening in an additional 7 days is low… if I was warned that the chemotherapy side-affects can last for 3 months after the treatment ends, I’d hope that means that the chemotherapy is still doing something for that time too. Hopefully…

I wanted to keep this post short so all those that I haven’t spoken to personally know that I won’t be in surgery tomorrow, without having to read 3,000 words of me chatting my normal nonsense. Of course, I had to indulge in a little bit of nonsense – 1,600 words of it to be exact. It is disappointing that it was delayed, especially so last minute, but it can’t be helped. There are plenty of bumps in the cancer road; this is just another one of them. At least I get another week to run, weight train and eat as much as I physically can. I made the below white chocolate and raspberry cheesecake to help my weight gain last night, and it should definitely do that.

Thank you for all the lovely messages today and over the last few days – I’ve felt the support coming from so many places, and in so many different forms – from thoughtful hampers to heartfelt messages. They all mean the world to me and I really mean that. If this means that I get a whole second round of lovely messages and hampers next week, so be it. I am a true martyr, I know.

Me and My Brother Celebrate Finishing Our 5K – 07.07.22