Pancreas

Total Pancreatectomy: 1 Year On

godley93, , , , , , , , , , , , , , , 3 Comments

The Road to Recovery

When the Scar Was Still Healing

I remember reading a theory about why time seems to go faster as we get older. When we’re younger, we have less experience of the world and of the many situations we find ourselves in as we traverse it. Many situations feel novel, and we are forced to engage our minds and figure out how to navigate them. In doing so, we focus on things and give them our full attention. As we get older, we find ourselves repeating the same patterns. This repetition allows us to go about our life in more of an autopilot mode. Due to this, we do not need to focus so much, falling into similar routines with confidence. This is beneficial to us as it allows us to spend less time and energy focusing on ‘standard’ problems, allowing us to move through them with less stress and by exerting less mental energy. Another consequence of this is that time passes by faster as we find ourselves engaging less and less with the life we are living. And on that note, how on earth has it been a year since my operation?

A year ago yesterday, July 15th 2022, was my operation date. There was a heatwave in the UK when I went into hospital. I remember reading the news as I sat in the waiting room, with the article claiming it could get as hot as 40 degrees. I thought that the heat wave might make being in the hospital even more difficult but I overestimated how aware of my surroundings I would be for the next few weeks. Perhaps during that period in the hospital, I might have felt more aware of my surroundings than I believe I was now. Perhaps I was aware of my surroundings and I am doing myself a disservice by stating that I wasn’t, but I don’t remember feeling hot at any point, so I can’t have been very aware of them. It nearly hit 40 degrees in Manchester and I don’t remember complaining about it, but I’m sure I did.

As I sat in that waiting room, I was surprised by the number of people who were also there at 6:00am. It took me a few minutes to realise that everyone who was there was actually waiting to go into surgery too. It feels like a group of people waiting to go over the top in World War 1 but with next to no camaraderie; we barely looked at each other. When my name was first called, the nerves really kicked in. I was glad that I wouldn’t have to wait in the room for longer, though. As the nurse shouted “Group 1” and immediately said my name, I knew that they were preparing for this to take a while. The surgeon had told me it would probably take a while, but he never estimated anywhere near to the epic figure of 14 hours which I ended up being in surgery for. He had also not mentioned anything about a total pancreatectomy; I didn’t realise it was even possible until I woke up and was told they’d taken my whole pancreas, alongside a shopping list of other organs.

The immediate recovery was brutal. A lot of people who have had major surgery for cancer will tell you beforehand that it isn’t as bad as the chemotherapy, but I don’t feel like that. It is really hard to come back from a surgery like this. There’s a lot of pain and a lot of experiences, which are frankly life-altering, that seem to come hand-in-hand with something as complex as a total pancreatectomy.

I suffered an episode of Delirium during the recovery in hospital, where I convinced myself that the medical team had used me as an experiment to see what happens if you remove someone’s pancreas. During that episode, I demanded that I be transferred to another hospital. It then developed into me believing that I had ostracised myself from my family by kicking off in the way I had, then the treatment team, then society in general, until I finally believed that I was going to be left to die in a prison cell. All of this was happening inside of my brain whilst I ran up and down the ward being chased by medical staff and security, and with alarms going off everywhere. I don’t remember loads of the detail, only my brother crying, my wife trying to convince me to let them inject me with something, and I remember seeing blood dripping from the various places around my body where I had ripped the lines out. That was just an episode, though. The trauma might live on in my head, but I woke up the next day (after being sedated by the medical staff the day before) confused but understanding that I was wrong the day before, and that I’d fallen down a mental slope into a strange place. None of the staff held it against me at all, which genuinely surprised me. When I woke up to Anna, I was surprised she still wanted to talk to me at all. It was a single lapse which I had to move on from; the overall impact from the surgery has been very different.

Whereas the episode of delirium was a single event which I struggle to relate to now, the recovery from the surgery is a long, difficult process. Things as trivial as having to use a commode with the assistance of a nurse are humiliating as a male in his 20s – I never expected that I’d have to do something like that in this stage of my life. Other things which seem trivial on paper were also difficult… I was constantly worried about what I was eating because of the diabetes (when I already didn’t feel like eating because of the pain) and I was adjusting to the huge wound across my stomach, which constantly pulled and hurt. All of it is demoralising in different ways.

There were times in the hospital where I remember feeling like things would never get better. Even after leaving the hospital, it took a long time for those feelings to go. In some ways, I still experience many feelings of helplessness over how things have gone, but they are less severe. Everyone seems to assume that the mere fact someone has survived something like cancer means they should be ecstatic with their life, but it is impossible to feel like that all of the time. I’ve sacrificed a lot to get to where I am and although I’d do it all again, I still have to acknowledge this fact – none of this is a miracle. It took a team of extremely experienced surgeons, nurses and doctors, as well as an incredibly strong network of friends and family to get this far, and that network still has to put in a lot of work to this day. It also took an incredible amount of personal perseverance – I’ve been to the very depths of my own emotional and physical capabilities fighting this, and I still find myself being dragged there weekly, if not daily.

It isn’t actually the diabetes or the cancer or the surgery that causes those feelings for me now, it is the constant problem of feeling sick after eating, the digestion issues (which are an every-occurring problem) and the difficulty that comes with trying to acclimatise back to ‘normal’ life. I’ve had so many experiences where I am in a bar or at a restaurant and I find myself looking around me and feeling like I’m an alien. It is a stupid way to feel, as if I am the only one in the room who could have possibly suffered from such trauma, which I know isn’t true, but it is isolating nonetheless.

Yet, despite so many difficulties, I have felt a quality of life come back that was perhaps unimaginable this time a year ago. The recovery from surgery took a long time for me, and I had to go in and out of hospital a lot in the first 6 months. There were times when I genuinely wondered if it was all worth it or if I would have been better off just living out my days without having had such a major and life-changing operation. I never feel like that anymore, and things have gotten much better for me. My advice to anyone who is facing a similar surgery, whether it is a Whipple or a total pancreatectomy (assuming that the Whipple has a similar recovery arc and comes with similar digestive issues), is to be patient. The recovery is long, difficult and painful, and some of the symptoms don’t really go away. Eventually, time plays its part and it is difficult to remember what it was like before anyway. Similar to when I gave up eating meat years ago and stopped looking at the meat options in restaurants, I now look at people who eat meals without taking creon or injecting insulin as just different to me; I don’t envy them or wish things were that way for me, I just get on with the things I have to do.

Some of that adaptation requires acceptance that things have changed. Personally, I think adjusting your diet is a must, even though all of the dieticians that I have been allocated tend to focus on gaining weight. Gaining weight becomes very difficult when you cannot naturally break down fat. Also, eating enough to sustainably gain weight becomes difficult because eating a lot, or eating things which are too fatty, causes any digestion issues to flare up more easily. If I eat a big meal these days, I feel horrible afterwards. My stomach aches, I feel sick, I struggle to walk without getting nauseous, I don’t sleep well and sometimes it just outright makes me vomit. These are just some of the symptoms, I won’t dive too deeply into the others…

Adapting one’s diet to include more legumes, pulses and beans is a really good way to get a good amount of protein in, whilst also eating things which are easy to digest and good for the body. If you’re also diabetic, they are generally low GI, meaning that they cause your blood sugar to spike less (although I find that sometimes this can be difficult to manage with insulin because I am more used to dealing with other foods which do cause it to spike, so I end up either over-injecting, or trying to split my insulin dose).

And the last point nicely highlights another huge adjustment area – being diabetic. If you have the benefit of knowing that the surgery you will be having is a total pancreatectomy beforehand, you will have time to do research on being diabetic. I woke up to the news that they had taken my entire pancreas, and although I was warned that diabetes is something which can occur after pancreatic surgery, I hadn’t been warned that this was likely in my case. Without any pancreas in the body, the chance of diabetes jumps to a mere 100% certainty… Without the organ which produces the insulin, you’re going to struggle to create insulin – it ain’t rocket science.

For the first week or so, the nursing staff helped me regulate my blood sugar with the help of a machine, but then the staff started to encourage me to try and manage it myself with their help. Some of the help I got early on was questionable. I was being told to inject a blanket 7 units with every meal, which is a really strange approach to managing diabetes, but I guess they have to get you to start somewhere. It just doesn’t make sense because even if I eat the same meal, I do not necessarily inject the same amount of insulin. There are so many factors. Just injecting 7 units (which, by the way, is a lot of insulin) for any meal is a very bad way of managing your glucose levels, so it isn’t setting the patient on the best path. The hospital did also give me orange juice with every meal, though, which is also bad practice. Nowadays I’d be delighted as I’d keep them in my satellite store for when my blood sugar drops, but I didn’t have a clue what to do at the time. I just knew that juice was bad an full of sugar, so I stayed away from. it

Due to the trauma from the operation, the body will process insulin very strangely for a long time. For me, I couldn’t manage it properly for at least 6 months, partially because I didn’t understand how to, but also because my body would use insulin totally differently day to day. One day I would inject barely any insulin all day and still find my blood glucose levels diving too low, whereas the next I would be injecting more and more, but my levels just wouldn’t come down. It was an incredibly stressful time, and I had at least 2 minor breakdowns. At one point, I was shouting at Anna asking why no one was helping me, before hitting myself repeatedly in the head with my phone and saying that I want to be knocked out so I don’t have to deal with it. It doesn’t work like that by the way – being knocked out just means someone else has to deal with it, and they probably won’t do as good a job as you, so I’d recommend staying as lucid as possible when managing your blood sugar.

My wife and my brother-in-law planned a meal for me yesterday with a few of my good friends. Until they mentioned that they wanted to do a meal for me to celebrate the anniversary of the operation, I didn’t actually realise the date was coming up. I’m really grateful to them for remembering it for me. It does feel special to be able to celebrate such an occasion, and it helps to remind me how lucky I am to be here. Despite all of the limitations that come with a huge surgery like this, it has still allowed me to find a good quality of life. If I can go out with people I love on a Saturday night, eat half a pizza and have a drink, I can’t be doing too badly, can I? It may make me feel more ill than it used to, and I may feel exhausted after doing it, but I can still do it. I also went out on Friday night to see a band I love with a few people that I love, so it’s been a really good weekend overall.

Yet, for all the good things I have, I still wrestle with a lot of grievances about how things are. I’m still not used to how fatigued I feel all of the time. I want my body to do better, to allow me to do more. I’m finding that I can’t spend huge amounts of time in the kitchen cooking and baking because it tires me out too much, forcing me to take short breaks where I have to sit down. If I go out to eat or to a museum, I worry that I’ll start feeling ill with only a public bathroom to retreat into, and they aren’t spaces that you want to rely on to claw yourself back to health… But it all manages to work somehow. Time’s script continues to be written around us, despite it seeming totally illegible in the moment. I only seem to gain any perspective on a situation when I am reflecting on it, which is why posts like this are beneficial, though I wonder if they add much value to someone else who is going through something similar. I don’t know how unique my experience is; it is difficult to find people who have been through it all. It just doesn’t seem to be common.

So, although having a total pancreatectomy has changed my life a lot, I am finding more and more that there is still plenty to enjoy on the other side of it. It isn’t an easy thing to experience, and the recovery is seriously tough, even ignoring the substantial changes the surgery permanently forces on your body, but there is plenty of light at the end of the tunnel. I’ve recently spoken to someone who was due to have the same operation, so there are obviously people out there who are having it, but those people seem few and far between. Hopefully with the development of new treatments for cancer, operations like this won’t be necessary anymore, but until that is a reality, I’m all for them taking place. If it allows someone like me to go out with their friends, eat pizza, and boast about being cancer free, it’s got to be worthwhile. Let’s hope I’m around to write a 2-year review next year!

Cancer Free (Sturm und Drang)

godley93, , , , , , , , , , 26 Comments

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

godley93, , , , , , , , , , , , 10 Comments

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.

White Chocolate and Raspberry Cheesecake

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