Diabetes

Another Twist in the Diabetes Tale

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Diabetes

My Continuous Glucose Monitor (CGM) in My Arm

Today, we delve into the fun world of diabetes again. Something you have to adjust to when dealing with diabetes is your body randomly changing tact with you. One day, everything goes smoothly and being diabetic feels easy. Then the next day, nothing seems to work and you can’t figure out why your blood sugar levels are all over the place. I’ve had an issue with extremely high blood sugar levels during the night recently. It developed overnight and with no explanation. I also tried to talk to my diabetes team about getting my CGM device funded by the NHS as I currently pay for it myself, but didn’t find much success in doing so.

Basal Insulin

My diabetes has been implementing the “treat em mean, keep em keen” strategy on me recently. Things were going well with it and I’d been feeling pretty righteous about the whole thing. “Clearly I was made to have diabetes,” I thought to myself, whilst I reviewed my blood sugar data a few weeks ago. My levels were showing as 90% in range for the previous 14-day period, which is actually a really impressive number if I do say so myself. That means for an entire 2 weeks, I was doing 90% as good a job as my old twat pancreas would have done, had it not decided to elope with its new tumour, forcing me to divorce it from my body. Unfortunately, the honeymoon period between me and my diabetes didn’t last, and the last 7 days or so have been a lot more stressful.

I am on a basal-bolus insulin regime. I’m not sure whether everyone who has to inject insulin is on a similar thing, or if I am on it because of some characteristic of my diabetes, but it is the regime I have been on since I woke up in the hospital and was informed that my entire pancreas ceased to exist within my body. The type of insulin that most people know about is called bolus insulin, and it’s the one used to counter the blood sugar spikes caused by eating. But there is another type of insulin in the diabetic’s toolkit which constitutes the basal part of the ‘basal-bolus’ regime.

Basal Insulin, also known as long-lasting or background insulin, is (ideally) injected at the same time every day, and helps to keep the blood sugar levels flat throughout the day. My friend Andy, who is a scientist that works in a lab and everything, looked into the differences between basal and bolus insulin when I first explained this all to him, as it seemed to tickle his scientific interest. After researching the differences on his phone for a few minutes, he tried to explain them to me… I think I remember the word cell or protein or nuclear or proton or Pythagoras or quantum or something, god knows, but it didn’t make enough sense to me to make me understand. At least he learnt something. I don’t know what the physical differences are between the 2 types of insulin, I just know the differences in how they affect the little graph on my phone used to visualise my blood sugar data, and I’ve recently discovered a little more about just how useful the basal insulin is, at least when the dosage is correct.

I’d had a problem with the amount of basal insulin I was injecting before. Originally, the diabetes nurses at Manchester calculated how many basal units I should inject every morning. They did this by sitting with me and asking me what I would eat during a typical day. This seems like an easy thing to answer, but I like to cook a lot of different things, and I couldn’t really think of an accurate summary of a standard day. My diet had also changed a lot because of the cancer and the chemotherapy. I couldn’t eat as well as I used to, and how much I could eat would vary from day to day. Despite this, we went through what an average day looked like. Based on that conversation, the diabetes nurses told me to inject 20 units of basal insulin every morning.

I started out doing this and didn’t really know what any of it meant. My blood sugar levels were all over the place during this time anyway, so it’s all a bit of a diabetes blur. It remained that way for a couple of months but got more frustrating once I left the hospital and had to manage it all on my own. My blood sugar levels would constantly go low during this period, and I barely ever managed to sleep for more than 2 hours without my diabetes alarm waking me up, which was driving me insane. I also had difficulties during this period with recovering from the operation, trying to understand how to manage my diet now that I was diabetic, and just general coping with alive – it didn’t feel easy at all with these various forces working on me. I didn’t know what having diabetes was like and sort of assumed that these difficulties with managing my blood sugar levels were going to stay that way forever. I thought it was an endemic diabetic problem.

A few months into managing my blood sugar levels myself, I started getting a little more confident in what I was doing with injecting insulin, and decided that I needed to understand more about why my levels were dropping overnight. After doing some more research, I read that this was a common symptom of injecting too much basal insulin. The bolus insulin, the type that you inject with food, won’t have any effect outside of about a 4-hour window. The specific window depends on the type of insulin being used as some have larger active periods than others. The basal insulin is useful because it keeps the glucose levels balanced during periods of fasting throughout the day (for example, between lunch and dinner, or over the nighttime when we are asleep). During these periods, the body continues to release glucose into the bloodstream. Without basal insulin also in the body, this release of glucose would keep pushing the sugar levels up in the bloodstream. The basal insulin controls this.

The reason that the blood sugar levels will be dragged down if your basal insulin is too high is that there is too much insulin in your system for the amount of glucose that your body is releasing during these fasting periods throughout the day. If the basal insulin levels are too low, the blood sugar levels will go up during these fasting periods, as there isn’t enough to deal with the flow of glucose. Mine was clearly too high during this period, so I decided to lower it by 25% after reading this. I’ve since learnt that you aren’t really meant to simply lower it one day, and should slowly drop the amount down in small increments every few days, as this allows one to see how the glucose levels respond to the change. Dropping 25% seemed to weirdly work for me, though, and this is how much basal insulin I’ve injected ever since, with very few issues coming from it. That is until recently…

Night Time Highs

Just over a week ago, I woke up to see that my blood sugar level was at 19.1. For reference, most healthy bodies will keep their blood glucose levels between 4 and 7… 19.1 is very high. I didn’t understand what had happened as I hadn’t eaten for 3 hours before going to bed, and the levels didn’t reach this high until about 7 hours after eating. My levels had been fairly balanced up until that point, and I hadn’t done anything unusual that day.

Then it took a very strange amount of insulin to get it to come down – about 7 units in total. That is more insulin than I would usually inject for my evening meal. Even for a pizza, which is one of the most carbohydrate-filled meals you can have, I’d usually only inject about 9 units. My blood sugar was acting like I’d eaten an entire pizza, yet the only crime that I had committed against my health that evening was being soundly asleep and accidentally missing a few buzzes of my diabetes alarm, which was trying to warn me about my level suddenly increasing. None of it made sense to me, but I thought it might be a blip. Yet, this happened again every night for the next 4 nights.

I left a voicemail for the nurses at King’s Diabetes Department and asked for their advice. I told them that I assume the issues are arising because my basal dose isn’t high enough anymore, but that the change seemed to come out of nowhere, so it didn’t make a lot of sense to me. One of the nurses called me back later that day and told me that she agreed that it seemed like my basal dose isn’t high enough anymore, and to inject another 4 units before I go to sleep in the evening to see if it helps. She then asked me to do some ‘Basal Checking’, and asked if I remembered what it was from the DAFNE course…

Now, if you’re thinking “What is basal checking?” – don’t worry, you’re not alone. I have no idea what basal checking is. Sometimes people seem to think that I am far more astute with these things than I am. I’ve only just had my 1 year anniversary of being diabetic, and for that first year, I spent a good amount of time either in the hospital, recovering from being in the hospital, on chemotherapy, or a combination of all of those things. I’ve only just started catching my breath. I’ve also been passed from institution to institution during that time, with no one really taking ownership of my treatment for diabetes until I moved back to London and got put in touch with King’s, due to being rushed into A&E there a few months ago. I didn’t even see a consultant who specialised in diabetes until I was referred to King’s, despite it apparently being standard practice that when you are a newly diagnosed diabetic, you are assigned an endocrinologist who will be in charge of your care. I have no idea what happened with that for me, but I know one thing – it never happened!

I told the nurse that I didn’t have a clue what Basal Checking was, that I haven’t done any courses on diabetes and that I still consider myself a mere diabetic pedestrian, blending in with the other diabetes subjects by holding my insulin pens and complaining about blood sugar, but that I don’t know a lot about it. Her response to all of this was that looking at my data, I manage my levels better than the majority of their patients and that she assumed that I must have been on the course. This was all nice to hear but didn’t feel encouraging for some reason. It just made me think that the majority of people with diabetes must really mismanage it. She told me that she would send me an article on Basal Checking but for now, to try injecting an additional 4 units of basal insulin before bed, as it seems that my basal dose is wearing off a little earlier than they would expect it to, and is not covering me through the night. Neither she nor I, nor any other member of the diabetes team seemed to understand why this change had suddenly happened, but I’ve gotten pretty good at not understanding why things happen to me at this point, so it’s all good.

Continuous Glucose Monitor Funding

I also asked if I could get my Continuous Glucose Monitoring (CGM) device, the device which continually reads my blood sugar levels and sends them to my phone, funded under King’s diabetes budget. I have been paying around £160 a month for it since being diagnosed, which I am happy to do if it is going to make my health better (which it does), but I would rather not have to pay for it if I can avoid it. And here is another conundrum of the health service – the one which means you benefit more from caring less (this is a rather tongue-in-cheek thing to say – I’m not actually suggesting that all people who struggle to manage their blood sugar levels do so because they don’t care enough).

Because I am managing my levels so well, the NHS rules state that I do not need a more advanced device to help me manage my levels. The NHS offer some standard devices which do a similar thing, but these devices have some functionality stripped out of them to make them more affordable. For example, I can set my own warning limits with the device that I pay for and want to be funded under the NHS, so it will tell me if my blood glucose is rapidly rising or falling, and I can set the limits for when it warns me about my levels going too high or too low. The functionality is useful in making sure I catch lows or highs before they become a big problem, and it is especially useful during the nighttime when I am asleep. Without this, I lose a lot of confidence in my ability to control my levels, would sleep worse as a result of this, would manage my levels worse as I would not catch them before they go too high or low, and my control would ultimately suffer as a result. What happens if your control isn’t good over a long period? Well, to name a few things that happen to those who badly manage their blood sugar levels – blindness, loss of limbs, damage of nerve endings and, ultimately, premature death. So yeah, not great.

Yet, apparently, this better device isn’t deemed useful enough for the NHS to pay an extra £30 a month to offer it as standard treatment for diabetes. I just don’t get it. The solution is that I make sure that my control is worse for a few months, and THEN I would be approved for the better device under the NHS. I’m obviously not going to do this, but it would actually benefit me financially to do so… No consideration is given to the fact that my control is as good as it is BECAUSE I HAVE THIS DEVICE. It’s so bloody frustrating! I understand budget constraints are tough and that I am lucky to be paying so little for a lot of the service that I receive, but some aspects of the service are illogical and don’t incentivise the right things. By not offering this type of device as a standard service, the health service probably incurs higher costs later on due to patients having to be admitted to the hospital, operations to have limbs removed and whatever else they have to do due to poor management of blood sugar levels. Anyway…

Adjusting the Basal Dosage

Injecting the additional basal insulin seems to be working so far. My glucose levels are more stable at night again, so that is good. The diabetes nurses are talking about putting me on a different type of long-lasting insulin, so I’m not sure if that will throw things off again or not, but they have told me to stick with what I am doing for now and that we’ll review again soon. Damn diabetes – never letting me get too comfortable; as soon as I feel like I am, it throws a new spanner in the works.

I imagine diabetes to be a cruel dictator, kicking back with a cigar in its mouth and its feet up on the desk, making some little tweak to the way that my body is handling insulin, and then laughing as I panic for 5 days, pulling what little hair I have out throughout the night as I try and get my glucose levels to drop from 19 back to 7; watching me complain that I don’t understand anything anymore and feeling like it’ll never return to normal, only for it to all be OK again a few days later… Another flare-up of the melodramatic tendency I have to view any change as a catastrophic, life-ending phenomenon, only to feel embarrassed a few weeks later at how impulsive my reaction was, as I think back to how quickly my attitude descends into pure chaos. I’m always either feeling like an untouchable expert in diabetes or a clueless half-wit, and never in between.

Luckily, I am now on the waiting list to go on the DAFNE course, which is a week-long course that teaches you about managing diabetes. I’ll be able to say more about it after I’ve done it because I don’t know too much about it right now, but I’ve read good things. It’ll be good to have some sort of formal training in managing diabetes, as I still feel awkward when I get asked about things like my current injection ratios (how many units of insulin you inject for every x grams of carbs in a meal)… I really don’t have a formal system for calculating it all currently, I just go off previous experience. The imposter syndrome is strong in this one. The diabetes dictator has rocked my self-confidence; I wonder what the next issue will be…

My Episode of the Project Purple Podcast

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I wondered why my statistics showed an unusual spike over the weekend, despite not posting anything until Sunday night. Then I realised that my episode of the Project Purple podcast was released on Friday and that my blog URL is featured on the website, so I deduced that this may have something to do with it. Either that or all of the rain that we’ve been getting in England has been forcing people to sit inside reading cancer blogs rather than enjoying themselves; both are totally plausible explanations. Perhaps it was a combination? Anyway, here is the episode, if you are interested in LISTENING to me moan about cancer for once, as opposed to just reading it. There’s even a video, which is a little terrifying.

I’m even on Spotify now, which means I have fulfilled a lifelong ambition to be an artiste with content on the platform (in my mind, it was going to be an intricately written song which everyone praised as being emotionally deep whilst beautifully composed, but featuring on a podcast about cancer was second on the list). I’ll link both below.

Project Purple Podcast Episode 254 – Surviving Pancreatic Cancer with Dan Godley
A Link to the Episode on the Website
A Link to the Episode on Spotify

Another Scan (L’appel du Vide)

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L’appel du Vide is a French phrase which translates to ‘The Call of the Void’. It refers to the tendency we have to entertain self-destructive thoughts, like wanting to jump off a cliff when standing on its face. The phrase doesn’t refer to the act of doing so, but the way that we are inclined to think about doing so when facing such a situation. Another example is the thought of ploughing your car through the barriers at the side of a bridge when driving over it. I frequently experience it when I am waiting for my train to travel into the office in the morning.

The train station has 4 tracks running through it. The outer ones stop at the platforms on either side but the inner ones are for the mainline trains which go between London Bridge and Brighton. I usually get to the station at about 07:03 for my train scheduled at 07:09. Whilst waiting for it, I always see one of the mainline trains fly through on one of the inner rails. There are no barriers sectioning it off.

Sometimes, as I stand there in my morning daze, I think about what everyone would do if I just took a running jump in front of the fast train as it flies through the station. It isn’t because I want to do it, there’s just a fascination with the idea. I wonder what other people on the platform would do, how easy it would be to execute the jump and whether I’d feel anything at all, or whether the rush of adrenaline would be the last thing I ever experience. I wonder if the ‘l’appel du vide’ phenomenon is somewhat related to the negative feelings I get around scan dates…

On Wednesday, I felt my phone ringing in my pocket whilst at work. Upon looking at the screen, I saw the dreaded ‘No Caller ID’, which is almost always the hospital. The woman on the phone told me that she was from The Christie’s imaging department and that they needed to book me in for a scan. Due to it being very busy over the next few weeks, she asked if I was able to attend on Sunday of this week. I was a little flustered but I agreed, always giving precedence to any cancer-centric plans over any non-cancer-centric plans, even if they are last minute. In the hierarchy of needs, cancer care trumps most other things, perhaps even eating. Once you have been admitted to the hospital a few times, you start to realise that not eating is actually encouraged by the medical field in a lot of cases. ‘Null by mouth’ they call it, and it absolutely sucks. It gets written on a little whiteboard next to your bed so you can’t even lie to the person going around the ward offering out hot drinks. You get to watch everyone in the other beds enjoy their morning coffee and toast whilst you aren’t even allowed a cup of water. It’s torturous, but I’ve normally been jacked up on morphine at the time, so I’ve gotten over it.

Once I had agreed to the short-notice appointment, I went about reorganising my diary to fit it in. I realised that I had plans for Saturday that needed to be rearranged, and then realised that there were train strikes on, meaning that I couldn’t get back to my parents for the scan via train. That meant factoring in the 5-hour drive from London too… not too bad but not ideal… Eventually, I managed to figure things out well enough, and it sort of fit into place… well, things were forced into place, but whatever, I had a plan to see my friend earlier on Saturday, then drive home that afternoon ready for the scan today.

At the start of the week, I already had a few symptoms that I was worried about. From one perspective, having a surprise scan flung on me felt helpful, as it would allow me to address any worries I have that these symptoms are alluding to another tumour growing inside my abdomen. On the other hand, it could confirm these worries to be valid, and by confirming them, it also makes them real. Once they’re real, I’m back in the world of dealing with an active cancer again, if dealing with it is even possible anymore. Dealing with it might mean “making peace” with it, to use a euphemism, which isn’t something I want to have to do, if I can avoid it.

The cognitive dissonance at play here is obvious – just because an oncologist hasn’t identified a tumour in your body yet doesn’t mean that it isn’t growing inside of you. Not having a scan doesn’t mean you don’t have cancer. It would be great if that was how the world worked, but it doesn’t. In actual fact, if you have a cancerous tumour, it really is in your interest to have it identified, preferably by someone who dedicates their life to trying to cure people of that type of issue. Still, when it is officially identified is when you officially have to deal with it, which sucks. Notice how foreboding I am being here? Welcome to my head… please don’t slam the door on your way out. Thanks.

The recent symptoms have been more of the same really, but they’ve got more intense. I’ve started to get the exact same tightness in my abdomen that I was originally trying to get diagnosed when I first realised that something was wrong with my body. It’s especially bad in the mornings which was also a key characteristic of it before. This isn’t the first time that I’ve had this problem since I was first diagnosed, and I even asked the surgeon about it after my operation as I was experiencing it a lot then. He reassured me that whereas before I had problems because of a tumour, now I will have them because of the trauma from major surgery, and that they may never go away.

Although this should bring me some comfort, this symptom mostly went away for half a year. Now it’s back and feeling worse than it has since it originally surfaced, which is disconcerting. No matter how many times I remind myself of what the surgeon said, it doesn’t fully satisfy me. If my experience over the past few years has taught me anything, it is that we know our own bodies better than anyone. Why is this feeling resurfacing now, if nothing has caused it? I’m sure there are other things that could be causing it, but I’m also pretty sure that it could be a tumour, so I can really go round and round in circles with myself on the topic forever. And believe me, I do. Round and round and round and round and round. The only positive is that it makes getting out of bed in the morning very easy, as the pain seems to lessen when I get up. If I stay in bed, I just worry about it, then worry about everything else, and then feel terrified that I’m going to die. I’d rather drink coffee on the sofa than contemplate how painful my inevitable death from cancer will be.

Then there is this random stabbing pain that I’ve started getting in the left side of my abdomen… Guess what else was in the left side of my abdomen? My pancreas! What was on my pancreas? My big fat Greek wedding pancreatic tumour! It’s hard to shake it off, especially when the oncologist told me that the most likely place the cancer will return is on the lymph nodes in the area around where the tumour was. Of course, that doesn’t mean that it would feel like a stabbing pain in that area, and I spent a few months after I got the all-clear worrying that my neck was swollen, only to find out that this wouldn’t be a symptom of my type of cancer returning, which made me feel nice and stupid. When I say I was worrying about it, I was seriously worrying about it. I kept getting paranoid that my neck hurt, which it probably did, but more from me tensing it due to me worrying about it all of the time. This should serve as proof that I have no idea what I’m talking about, need to stop generalising that everything means I have cancer again, and should just get on with my life and be grateful that I’m in this situation at all. It isn’t so easy, though. There’s also the issue of occasionally shitting an alarming amount of blood, but that’s totally fine, right? Yeah, I’m sure that’s totally normal. Cool. Anyway.

L’appel du vide really summarises my feelings towards my cancer at the minute. I feel like I am being pulled into a void. When I hadn’t had a successful operation and things weren’t looking good for me, I feel like I had some extra level that I could go to which comforted me. There was an element of knowing that I might not have too long left and that I need to do all I can to enjoy it which felt empowering. Those feelings of helplessness don’t just dissipate overnight because treatment went better for me than anyone was expecting it to. Instead, those feelings seem to float about in the ether, binding to any insecurities I feel and infinitely multiplying them. I’m still not in a position where I believe that things are actually going to end well for me, I’m just waiting for them to go wrong. The fact that I can’t put a timeline on when that will happen anymore just makes it all the more daunting.

Now that I’ve had another scan today, the same thing is happening. I’m certain that they’ll come back and it’ll be bad news. But even if that doesn’t happen and they’re all clear again, I feel like I’ll just be letting out a sigh of relief that I’ve got away for another few months before the next scan, where THEN they’ll surely be negative. I even started entertaining the thought that even if the scan is clear, it must be because the tumour hasn’t grown enough to be picked up by it yet. Then I am convinced that WHEN it comes back, I’ll be dead in a matter of weeks; all I have backing that up are a few stories I’ve read on the internet, but every cancer case is notoriously different. I’m an expert at being an inexplicable expert on cancer, apparently, considering I know nothing about it whatsoever, other than the experiences I’ve been through.

I need to just stop thinking about it so much, but it’s impossible to do. Stopping yourself from thinking about it is almost more difficult than just letting the thoughts come when they need to, and doing what you can to deal with them. It is so easy to read about someone dying from cancer, seeing that they fought it for a year, 2 years, 5 years etc, but that doesn’t do any justice to what they went through. Every minute of every day it is there, whether it is an explicit symptom that they’re suffering with or just the knowledge that they have cancer. Every. Fucking. Minute. How do you counter that?

I had a dream that I was locked in a room, and all I could hear was this incredibly loud screaming, but I couldn’t stop it or get away from it. I woke up and my blood sugar was 18.9, which is insanely high, and I had a horrible pain in my stomach. It all felt relentless, and then I spent an hour wondering what would even kill me if I died of pancreatic cancer. Would I stop eating? Would my body just give up? They’re all questions I don’t want to answer, but I find myself falling into the details of them anyway. Perhaps it is necessary to feel these things and navigate these thoughts if that is what is going on in my life, but it can all feel so counterproductive and unhelpful.

So, the scan was fine but I don’t know when I’ll get the results as I haven’t received an appointment yet. I’m sure in the meantime I’ll find ways to perpetuate the symptoms and reassure myself that everything means I have cancer again, yet also feel disproportionately invincible on the days when I do feel good. Whether it is the l’appel du vide phenomenon or not, it is nice to read about something that I have thought about a lot in life. Cancer is, after all, a huge void, mercilessly dragging millions of people into it every year and decimating their lives. Whether standing on a real cliff or a metaphorical one in the form of cancer, it is difficult to not entertain thoughts of falling over the edge. In those thoughts, there probably is some relief, and I know that writing this has provided me with some catharsis, but I wonder how others deal with this. Some people just have an unrelenting positivity about life – what a gift that must be!

Total Pancreatectomy: 1 Year On

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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!

Diabetes Anonymous

godley93, , , , , , , , , , , 1 Comment
The Dexcom Device in my Arm Which Sends Readings to my Phone

The first contact I had with diabetes, and I’m talking about actual contact as opposed to just knowing it existed, was with my housemate in my first year of university. He was a type 1 diabetic. I vaguely remember him injecting whilst standing in the kitchen. He didn’t hang out with us much, but he was friendly. Occasionally he would join us for a drink, and I remember him drinking Diet Coke like it was water. That never made sense to me, but not because of diabetes; I just didn’t get why people loved Diet Coke so much. I don’t think I ever saw him without a can of it in his hand.

There was a tattoo on his wrist which alluded to the fact that he had type 1 diabetes, but I can’t remember what it said or what it looked like. I remember him telling me that it was to inform people of his medical issues if he was ever to be found in a diabetic coma by a stranger, and could not communicate that he was diabetic. At the time, I didn’t really think too much about any of it. Similarly to the people reading this who aren’t diabetic, it was just another talking point to me. His comments about diabetes were the same as anyone making jokes about anything. I used to make jokes about my receding hairline, he would make jokes about his pancreas not working. Now I have a receding hairline and no pancreas at all – who saw that coming?

I consider myself quite an empathetic person overall, but I think we all struggle to empathise with every person’s issues that we know, all of the time, never mind the people that we don’t know that well. It would make life too difficult if we felt the pain of every individual who opened up to us. Trauma would spread through the human population like ink spreads across blotting paper. Therefore, it makes sense why this isn’t something that many of us are inclined to do, though I have met a few people who seem to have an uncanny ability to. The most recent one I met was a friend of a friend. They do improvised comedy together and I’d attended a show to watch their group perform. Afterwards, we joined them for some drinks, and she spoke to me for a bit about my cancer. You could see in her face that she really felt the pain of the struggle, and was living through the words she was processing. It was really moving, actually. Hopefully she does manage to decouple herself from these conversations after they’ve happened and I’m grossly overestimating how much she cared, but I think I’m a good enough judge of character to feel that it is genuine.

Despite being a good judge of character, I’m apparently not as empathetic as this individual, and I never got that involved with my flatmates diabetes back in university. I wish I had paid more attention to it at the time. He made a lot of passing comments about being diabetic, similar to how I do, but he never spoke about it much in actual conversation. If we had hung out more, I would have spoken to him about it, and I would have felt a lot of empathy for him, but we never got to that stage of friendship, so those feeling just never emerged for me.

One time, I remember he had to be rushed into the hospital. I’m not sure why, just as I’m not sure when or why his diabetes had developed in his life, but he reappeared a few days later, looking tired out and saying that his health issues had flared up. I hadn’t seen any of it happen – his girlfriend lived in the flat across the corridor from us in the block of halls, and she had told us about it happening the next morning, after he was rushed in. There weren’t any sirens or ambulances. I think his mum had picked him up and taken him; I never met her either.

Now I find myself in the shoes of an active and prolific diabetic. I describe myself as ‘prolific’ because that’s how it feels, living needle to needle, drinking low-sugar drinks like ‘Kombucha’, a drink I used to detest, and worrying about my feet and eyes dropping off or seizing to work (both are vulnerable if you don’t control your blood sugar well). My christening into diabetic life came at a good time really… technology has excelled a lot since I was at university. I remember seeing my old housemate pricking his finger and testing his levels a lot. Although I still have to do this occasionally, most of the time I have automatic readings sent to my phone, which triggers notifications if anything dodgy is happening. It makes life much easier.

During the periods where I have had to prick my fingers to check my glucose levels, either because my device has stopped working or because I am waiting for one to be delivered, they’ve quickly become sore. I want to make an analogy to when you start playing guitar, and your fingers hurt so badly at first but eventually get used to it, but that wouldn’t make a lot of sense. Your fingers hurt less when learning guitar because callouses form on the end of them, which provide extra protection against the thin metal strings that are pressing into the skin. The harder the callouses are on the end of a diabetic’s fingertips, the sharper the needle needs to be, or the greater force it will take to draw blood, or so I assume… Maybe that isn’t correct. After 40 years of it you’d presumably need a gun to draw blood if I was right. Whatever, anyway…

Just because they’ve gotten sore doesn’t mean I haven’t gotten used to it. I’ve gotten used to stabbing myself in the stomach to inject insulin about 15 times a day, so pricking my finger is light work. I don’t envy people who had to do this as their primary method for checking their glucose levels, though. I can’t imagine it was enjoyable, never-mind the constant stressing about where your levels are at, whether they’ll go low etc. The lows can sneak up on you – they sneak up on me all the time.

I’ve heard that before artificial insulin could be produced, they would get it from animals like pigs. Pig insulin… it doesn’t sound great. Then again, bacon comes from pigs, and people seem to love that, so perhaps pig insulin would attract a larger clientele to the diabetes world. Insulin sandwiches with brown sauce and a hit of bacon straight into the tummy fat, administered by a needle. Yum. I’m glad I get the fake stuff; let the pigs keep their insulin, they deserve it more than me. They aren’t responsible for my illness.

Now I’ve transitioned into a new phase of cancer-hood, one where I’m expected to be a normal-functioning member of society again, I have to curtail some of the urges I have from my days as a cancer sufferer. I’m used to speaking about the cancer frequently. There was always a pretence to talking about it, because I wasn’t working, and I frequented spaces which I existed in because of the cancer – hospitals, GP surgeries, family gatherings where we spoke about what’s been going on with treatment. All were full of people who wanted to hear about the cancer, either out of interest (friends & family asking how I am) or out of professional acumen (I would be worried if I attended an appointment with an oncologist and didn’t speak about cancer at some point). Now I’m an operational cancer-sufferer and diabetes-doer, I don’t have the same pretence to talk about the issues.

A few days ago, I was in a workshop with some of the directors from work and my diabetes alarm went off. It sounds like an obnoxious siren-type alarm, and if I didn’t know what I do about diabetes, I’d think it was a stupid joke that some stupid individual was playing on the rest of the stupid room. Everyone was very British about it and diligently ignored it. The director was standing at the front doing a presentation and I was sat right in front of him, so it couldn’t have been in a worse place really, but I felt safe in the knowledge that if anyone said anything, I could inform them that it was due to a life-threatening illness, not bone idleness. Perhaps it was a little bit of bone idleness; the app does have a quiet mode, but I figure I’d rather definitely hear it and do something about it, as opposed to not realising it has gone off, and only finding out when I’m arse over head on the floor.

And this is the urge I’m talking about. I still have this urge to discuss everything, all of the time. In Rob Delaney’s book A Heart That Hurts (yes, I mention this book all of the time now), he talks about how he’s a writer and comedian, so he deals with things by writing about them and pulling everyone into his experience. I think I’ve always enjoyed conversing with my friends and family, and making light of negative things that are going on, both in my life and in the world more generally. That habit results in me yearning to speak about my experiences with anyone who will listen. When I’m sitting at a table with unfamiliar colleagues, winding up my needle because my blood sugar is going high, I want to explain it. I see them looking at what I’m doing, then trying not to look when they get an idea that it’s medical-related, and trying to pretend that none of it is happening. People seem to think it is rude to simply show an interest. I get it, that’s what I did years ago with my flatmate, but it’s preferable to just say, as opposed to clearly wonder what you’re doing and why. And this is where it all comes full circle.

Now, I think back to how little I learnt about my flatmates experience with diabetes despite being around him for an entire year, and I understand things better. Not the things about diabetes, but how it is difficult to get so involved in other people’s issues when they aren’t happening to you. When it’s my friends and family concerned, it is also happening to them because they’re a part of it. They are forced to come along on this journey with me, talking to me about the lows and sharing the highs. But to the colleagues that I don’t know so well, I’m just another person with a set of problems and anxieties. One of those is diabetes – “so what,” I hear the world groan in disinterest. One of those is cancer, too – “damn, that must suck. Hope it doesn’t happen to me,” the world responds, barely taking its eyes away from its Instagram feed. It isn’t right to expect everyone to care about your problems, even when they do leak into the ‘more severe’ category.

So I’m trying to strike a balance, but it’s hard. As a chronic over-sharer, I fall into the mistake of thinking that people want to know things. I like to think that if my flatmate really wanted to talk about the ins and outs of his diabetes, I would have listened. I would now, and I would have before my diagnosis, but perhaps I wasn’t the same person all of those years ago, so maybe I wasn’t forthcoming enough in talking to him. But he had had diabetes for a while as far as I was aware, and he had probably learnt this lesson too. Jokes are ok – people like jokes. Some comments and chats are also ok, it can be interesting for people who show an interest in it and want to get to know you better. But a table of colleagues, most of which you haven’t spoken to – or even seen – before… probably not.

I acknowledged the alarm by clicking on the notification and then put it on silent, so if it went off again, it would only vibrate. Then I quietly went into my bag and got my sugar tablets out so I could throw a few back. They’re so artificial tasting – it’s horrible. I try to carry juice on me usually but I didn’t have any with me on this occasion. During the next 30 minutes of the session I spent 80% of my brain power focusing on the things being said, and 20% checking my blood sugar to make sure it was starting to go up, and eating more sugar tablets when needed. A whole episode happened in those 30 minutes in my head, which everyone else was totally unaware of in the room. But I’m sure there was plenty going on in everyone else’s heads too, whether it was something that they were physically acting on or not.

Isn’t it annoying that we get sucked into our own narrative in life? The fact that we only truly understand our own intentions, thoughts and transgressions then influences us to such a degree that we forget that others don’t think like we do and, more importantly for my point here, don’t care about the things that we care about. I wonder what the world would be like if we could just sync up our minds and truly share experiences – not through the lens of language, where we’re so influenced by whether we think we’ll be judged, or even by our tendency to remember events in a way that is more favourable to us – so that we could truly understand what each other go through. Would that make us a better species? One that is more capable of caring about and associating with each other? Or would we simply learn how depraved and self-serving we all are, and how society is only held together because of intangible social forces which would seize to exist if we knew the exact intentions and feelings of everyone else we meet? If the internet is a proxy for that world, I think it would fall into the latter category, unfortunately. Perhaps we should stave away any technological develops which push us towards that type of reality – it might not end well for us.

What I do know is that I’ve met some incredible people who haven’t been through what I’ve been through, yet listen and talk to me about it like it’s a passion of theirs. If I can make someone else feel like that about something that they care about too, then I feel like I’m doing a good thing in the world. That’s all I can strive to do.

Diabetes for Dummies

godley93, , , , , , , , , , 8 Comments

The ‘for dummies’ brand is a series of books which aims to make a plethora of topics more accessible for the average Joe. They present information in a logical format, breaking it down into meaningful parts which build on each other. For example, in my old job, I had to learn the database querying language SQL. I got myself a copy of SQL for Dummies, and found it very helpful in learning the basics of the language, and it is the closest that I have ever been to being proficient in another language. It’s a shame that the only thing it allowed me to communicate with was a database, rather than people from other countries. I didn’t achieve a level of proficiency where I was dreaming in SQL either, so I don’t think I ever crossed the threshold into being considered a ‘native’ speaker. Damn, did I query some databases, though.

I haven’t directly discussed diabetes too much in the blog so far. As I sat flirting with the idea of doing so, the thought came to me about the ‘for dummies’ book series, and how it would be fun to write one for diabetes. Well, lo and behold, they’ve already got several books on diabetes, including – ‘Type 1 Diabetes for Dummies’, ‘Diabetes for Dummies’ and even ‘Diabetes Meal Planning & Nutrition for Dummies’. They are prolific. If you are looking for a truly informative experience, I would highly recommend going for one of the official books. If you would like the Dan-ified, ‘woe is me, I had pancreatic cancer’ version, however, you’ve come to the right place. Pull up your socks, grab a drink of sugar-free water and let’s begin.

It’s always nice to start discussing a topic with a little anecdote, so let’s start there. Having diabetes could have won me some money, if I was a betting man. When I was younger, a few of my good friends decided to host a wager. All of them were eating a lot of chocolate and drinking a lot of sugary drinks at the time. In this coterie were two of my best friends, Luke and Dave. For example, Luke enjoyed buying 2 bottles of Lucozade at lunch (they were 2 for £1.50, or something like that) every day, and using that fluorescent orange liquid to help digest a Boost bar, which might be the sugariest chocolate snack on the market. This common habit of consuming an eye-watering amount of sugar every day led to a disagreement in the group. None of them could decide who was going to get diabetes first. To settle it, they all decided to pledge £20 each, and whoever got diabetes first would win all of the money.

If you’re now thinking that this isn’t very much money and it sounds a little stupid, you are correct. It is very stupid. I opted out, as I actually wanted to keep my money and not get diabetes. I hoped that any bad eating habits I had at that time were me living out my young years to the fullest before I was forced to follow a stricter diet due to my metabolism starting to give way to my age. Well, look how that turned out for me. I was indeed the first to get diabetes, and it was totally out of my control. The jury is still out on who is going to win their competition, but I’ll be the first to laugh when it does finally conclude. They’ll have to give the winnings straight to me to get an early edition of my book, ‘Living with Diabetes for Idiots Who Bet Against Their Own Health’, which I will be holding back on releasing until after their contest is concluded, so I can charge the winner an excessive price. It won’t be winning any Nobel Peace prizes, so I may as well hold onto it until then.

Let’s start with the basics… Insulin is a hormone which is produced in the pancreas by pancreatic beta cells. Easy, right? No, you’re right, I don’t really understand what that means either. Basically – cells in the pancreas create, store and release insulin. When the body detects that the level of glucose in the blood is increasing, the beta cells release insulin, which causes glucose to transfer from the blood to the cells in the body. The body’s cells need glucose for energy. If the glucose levels in the blood are too low, the subject experiences symptoms such as light-headedness, sweats and ‘jelly-legs’. If the glucose levels in the blood are too high, the effects are less severe in the short-term, but especially high glucose levels can lead to symptoms such as headaches, excessive thirst and even vomiting. In the long term, consistently having high blood-glucose levels can cause severe issues, though, such as blindness, and can result in limbs needing to be removed… Not fun.

Consuming carbohydrates causes blood glucose levels to increase, necessitating the release of hormones such as insulin, which then encourages the glucose to transfer from the blood and to the cells. How on earth healthy bodies manage to do this so seamlessly is totally beyond me. Only when you are manually managing your blood glucose levels do you realise what an absolute pain in the arse this process is. Nearly everything changes how the body processes carbohydrate – the temperature, how stressed you are, the amount of exercise you have been doing, whether you are ill, how many goals your favourite football team scored last night (that last one may be a joke, but if it increases the level of stress you are feeling, it might actually be applicable). Yet, healthy bodies just sort it out. I, however, am left trying to account for a million factors that I do not understand, whilst also trying to eat as much dessert as possible, and feeling forty times more bad about doing so because I know that it is just going to make my night harder, as my blood sugar peaks and troughs, causing the alarm to go off repeatedly on my phone, and waking me up every few hours. I’m complaining again, aren’t I? Sorry, back to the hard hitting facts (which are under-researched and prone to error).

Type 1 diabetics are reliant on insulin to moderate the glucose levels in their blood. Type 2 diabetics are not, but have to adjust their diet to help control it. There is also a little-known third category of diabetic who walk this earth – Type 3c. The NHS do not recognise this as a distinct category, so they are commonly lumped in with Type 1s, because both are reliant upon injecting insulin, due to the body not being able to naturally create it. The politically correct term for a person who relies on injecting insulin is ‘Insulin dependent’; this avoids offending anyone. I am actually a Type 3c diabetic myself, so I know how it feels to be part of this stigmatised community who are not recognised by the NHS, and who have no rights under The Geneva Convention of diabetes.

The difference between type 1 and type 3c diabetes is the following. Type 1 diabetes usually occurs due to an autoimmune reaction where the body identifies the insulin-creating cells in the pancreas as the enemy, and proceeds to attack them until they’re mostly dead, leaving the subject unable to create, store and release the hormone anymore. See all that praise I gave to the healthy body earlier for being able to regulate blood glucose levels so effectively? Well, guess how much praise the immune system is getting? Nada. Do your job and do it properly!

Type 3c diabetes, however, is caused by damage to the pancreas. In my case, that damage was done by removing the pancreas entirely, so I would say that the definition doesn’t really go far enough to cover what occurred; sort of like an individual claiming that they will paint your walls, but then proceeding to plant explosives in cans of paint all around your house, and detonating them all at once, ensuring that paint did indeed go on the walls, but failing to mention that those walls would no longer be standing. You feel a little hard-done by re-reading the definition, and you wonder if it does justice to the events. Anyway, I digress.

If you’re wondering what Type 3 diabetes is (without the ‘c’), I truly have no idea. I’ve tried to read about it before, but it seems to be touted as an early sign of alzheimer’s, although I’m not sure if that is proven or just a theory. None of it makes much sense to me. Does it mean that I am likely to develop alzheimer’s disease at a statistically early age? I have no idea. Let’s hope not. This blog has already shown my proclivity to focus on the negative, so I could do with less things to worry about if possible, not more. Thanks.

So, what does it mean, having to regulate the body’s blood glucose levels yourself? These days, there is some pretty incredible technology around to help. I have a circular device in my arm called a Dexcom which monitors my blood glucose levels. This type of system is called a Continuous Glucose Monitor (CGM) system, as it continuously sends readings to an app on your smart device. If my blood glucose levels are going too high or too low, it sends out an alarming (and sometimes embarrassing) noise to warn me, allowing me to correct it by either injecting insulin (if it is too high) or consuming sugar (if it is too low). Sugary drinks are the best way to get the blood sugar up again, as it reaches the bloodstream quicker in this form. Sweets like jelly babies and fruit pastels are good too. Anything that only contains sugar is best, as if it also contains a lot of protein and/or fat, it will take longer to break down and extract the sugar. The same applies to starchy carbohydrates, like potatoes and bread. Although these things contain sugar in the form of carbohydrate, it is processed in a different way to less complex carbohydrates, as the sugar is mostly extracted in the small intestine, rather than during digestion in the stomach.

The game of keeping your blood sugar in the correct zone is akin to playing the old game Flappy Bird on your iPhone. If you don’t know, Flappy Bird was a game released on the App Store in 2014. It took the world by storm, and everyone was obsessed with it. The objective was simple – you are a bird, and when you tap the screen you flap your wings, causing you to rise slightly. If you didn’t tap, you fell again. In the game, you were flying along horizontally, and there were various green pipes that would appear from the top and bottom of the screen, so you would have to either tap the screen the right amount of times to fly over the pipes, or moderate your tapping to dip below them, depending on which part of the screen they were appearing in. Well, with your CGM, you are essentially doing this, but instead of it being a fun game, it is integral to your health (it is a little bit fun in a strange way, though).

The Diabetic’s ‘Flappy Bird’ – Screenshot from the Dexcom Application

Keeping your glucose levels between 4 and 7 is considered ‘perfect’ control, if you can keep it there. My 90 day average, according to my Dexcom app, is 7.7, which I’m very happy with. I’ve heard some people say that they strive for an average of around 10, and others who try to keep it in the ‘perfect’ range. I believe if your average is as high as 12, that is where you may face problems in the medium-long term. I try not to read about it too often, but I believe it is in this region where blindness can become an issue, as the blood vessels in the eyes are very delicate, and having high levels of glucose in the blood can damage them.

My 90 Day Averages

Different people feel the lows at slightly different numbers. Personally, I don’t start actually feeling any effects until I’m as low as 3. Some people are quite sensitive to them I believe, and will feel off as soon as it hits 4. On the few occasions that I’ve not had a CGM device in, and I’ve had to test my finger to manage my insulin levels, I would start feeling light-headed, prick my finger and wipe the blood on the testing strip in the small glucose-reading device then, to my horror, find out my glucose level is at 2.7. It has shocked me a little bit, as I rarely see my levels go that low, and I start getting paranoid that any second I’ll pass out. But I’ve never had an event where I’ve gone unconscious, and will aim to keep it that way for as long as possible, if not for my entire life.

Low blood sugar is particularly dangerous, as it leads to the patient passing out far easier than the blood levels being high, as far as I am aware. This occurs due to the cells in the body not having enough energy. The opposite, where your blood sugar is very high, can also lead to the subject going unconscious, which I didn’t even realise until recently; I thought you could only go unconscious from low levels, but apparently if it gets very high, you can pass out from dehydration. The more you know, the more you wish you didn’t have to…

It is worth knowing the symptoms of low or high blood sugar, as it may help you save someone’s life. Low blood sugar can lead an individual to seem drunk – they will appear drowsy, shaky, weak, sweating, and may struggle to speak. High blood sugar is a little different and probably harder to tell from any external physical symptoms – the patient may feel the need to drink a lot, feel tired, get headaches, experience nausea and vomiting, and develop stomach pains. Quick action is essential if someone falls into a diabetic coma, or is on the verge of falling into one. That is why you should take it seriously if you see someone who looks visibly impaired in public, and not simply dismiss them as a drunken idiot. Pay attention to their wrist and see if they have any sort of medical band on, which identifies them as having diabetes. Falling into a diabetic coma is very dangerous for someone with diabetes, and will result in death if it is not urgently treated. Knowing these things can save someone’s life. If they are still awake enough, encourage them to drink something sugary, like fruit juice or Coke. Make them drink about 100 – 150ml of the liquid, that should be sufficient. If they are already unconscious, call an ambulance immediately.

Anyway, back to the less serious stuff. My new favourite pastime since becoming a Danabetic is finding low sugar drinks that I can enjoy, that are not full of total crap. When you look on the side of a Coke Zero can and it claims that it has 0 of anything in it, you have a right to be suspicious. Trip is a good brand, and has the added benefit of containing CBD. The Elderflower Mint flavour is amazing, but I cannot taste an iota of elderflower in it; it is all mint, which is fine with me. Another good brand is Punchy, who do a Blood Orange, Bitters and Cardamom flavour which is TO DIE FOR. Blood orange is so underrated as a flavour.

I also enjoy Kombucha drinks, and they are usually very low sugar too, but I’d say it is a more controversial flavour, and one that some people really despise. I used to despise it, but then my life got flipped-turned upside down a la Prince of Bel-Air, and low sugar drinks became more of a prerogative to me, so I forced myself to try it more. Lo Bro’s Passionfruit flavour is a good one, if you are looking to get into kombucha. It is quite vinegary, which doesn’t sound appealing, I know, but it’s very good for you, and the perfect drink if you are northern and want an excuse to drink vinegar.

None of these drinks are particularly cheap, I know, but considering I hardly drink alcohol anymore, and they are all low sugar, I think it is worth it. If you are trying to reduce the amount of alcohol you are drinking, or just want some exotic drinks to dive into in the evening, I’d recommend all of the above. Now, one last point, then I’ll wrap this up.

Since being diabetic, I have felt more of an affiliation with mothers who have to breastfeed in public. Stay with me… On the tube, I occasionally have to inject insulin due to my blood sugar going high. I’ve done this a few times on the way into work, when the train is absolutely rammed and I barely have enough room to maneuver the pen into my stomach. Usually, as I pull the pen out of my bag and attach a needle to it, I see people inquisically trying to watch, whilst also trying not to seem rude. Sometimes, they don’t care about seeming rude at all, and they just stare at me, trying to figure out what I am doing. One time, a little girl who was sitting next to me asked me what I was doing. I told her that I was diabetic, and that I had to inject insulin to keep me alive. Her dad then apologised to me and told her to leave me be, but I actually found the whole interaction quite sweet.

It makes me think of mothers having to breastfeed in public, and how they also probably monitor the reaction of those around them. I am also aware it isn’t actually akin to the experience, and that the act of breastfeeding your child is a far more intimate act than shoving a needle into your belly, but you know, I am one step closer to knowing what it feels like. I stand with you, breastfeeding mothers in public, and know exactly what you go through every day. We should link up and start an advocacy group – I don’t mind being president and mansplaining our grieves to anyone who will listen. Consider this my application.

So, there is volume one of Diabetes for Dummies. Hopefully you’ve learnt something and, if not, well done, you know a lot about diabetes already, and probably listened much more attentively in Science than I did. I’m coming up to my 1 year anniversary since being diagnosed, and feel like I’ve come a long way in that time. Initially, I found it all really hard and scary to get to grips with, but it does start to get much easier. You become more confident in your decisions, and more in control of the overall situation. I could write another 400 posts about the lack of support for those first few months, but I’ll save that for my next release, ‘Fighting Diabetic Authority for Dummies’.

Sonder

godley93, , , , , , , , , , , , 9 Comments

‘The profound feeling of realizing that everyone, including strangers passing in the street, has a life as complex as one’s own, which they are constantly living despite one’s personal lack of awareness of it.’

Wikipedia, Definition of ‘Sonder’
Manchester Royal – 10 Days Post Surgery

I’m sure the title of this blog post will be met with glee by some of my closest friends, so I may as well get the story out of the way. When I was 18, I learnt the word ‘Sonder’ for the first time. I can’t remember where I heard the term; I have a suspicion that a band I liked put out a song with that title, but I’m not sure what band and I don’t have any recollection of the song itself. I quickly looked up what the word meant, and its definition immediately struck a chord with me, as it perfectly framed something that I had thought about many times but had never managed to properly define. It is such an interesting concept and one that still occurs to me frequently.

The most recent time it occurred to me was when I was sitting in a traffic jam earlier in the week. There were roadworks on, and some temporary traffic lights were in place to control the three-directional traffic. In a classic case of ‘The World vs Me’, I watched as the lights seemed to let every car come through from the other directions, then only allow about 5 cars through from my direction before turning red again. I was getting wound up despite having nowhere to be, and it all was pretty inconsequential whether it took an extra 5 minutes for me to get through these lights and get home. At some point, I became cognisant that I was being stupid, and I started telling myself that it did not matter and that I was one of many people who were experiencing the exact same thing at that moment. Then I started to think about the fact that someone else might actually be late for something in that queue – a spouse’s birthday party, picking their child up from school etc. Maybe someone was sitting in that queue after having a horrible day at work and knew they were returning home to an empty house, after recently getting divorced, or some other miserable scenario. I started romanticising the idea that my life wasn’t so bad, and that someone else in this queue was probably dealing with something far worse than me, and that I should use this time to just relax for a few minutes. It helped me gain some perspective, even if the scenarios were completely imaginary. I actually managed to forget that I have cancer for a few minutes, and was even claiming to have an enviable life because I didn’t have anything to get annoyed at these temporary lights for, other than the mild inconvenience. If only that was the measure of success in the world… I’d be a bona field Buddha by the now if it was.

Anyway, back to the story. Young, 18-year-old Dan, was totally in awe of this new construct that he had discovered. So what did he do? He got it tattooed across the right side of his chest… because why wouldn’t you do that? The word ‘Sonder’ awkwardly lay across my chest in a curly font for no real reason other than “I liked the definition.” It was my first tattoo, so part of me wanted to see what it felt like getting one too, and perhaps that made me more willing to randomly get a word tattooed on my chest. I was yearning for any excuse to get a tattoo now that I could legally do it.

I’ve since had it covered up. Not because I was ashamed of it, it just looked quite lost having a single word on my chest, and it was difficult to get things done around it without it looking strange. So, it is no longer there. I haven’t lived it down with my friends, though, and one of the common jokes was that it actually read ‘Sandra’ instead of ‘Sonder’. Despite never having dated anyone called Sandra, the joke was that I got an ex’s name tattooed on my chest before we broke up. I did play my own part in perpetuating this joke as I did find it very funny, and would regularly tell people that I had an ex-girlfriend’s name tattooed across my chest. Sometimes it is better to just indulge in the joke as opposed to becoming a victim of it. I also found the joke pretty funny, so that helps.

The ‘Sonder’ Tattoo – During Masters Year, 2015

I’m not sure why I thought the best course of action after discovering a new word I liked was to immediately get it tattooed on my chest. Whether I thought it made me more interesting, or whether I liked the way that this obscure word might help explain something about me as a person, I’m not really sure. I can’t remember how I thought then, and I struggle to relate to a lot of my actions throughout this period of my life now. After all, I was a very different person then, one who drank to extremes and actively ignored many uncomfortable truths about myself. I probably still ignore some uncomfortable truths about myself, but some, like the fact that I have cancer and am statistically very likely to die in the next 5 years, I feel like I’m pretty good at facing… maybe I’m even too good at facing those uncomfortable truths now, and the more pertinent challenge is learning to ignore them and just enjoy myself.

The thing is, I have a lot of tattoos now, and I don’t really understand why I got many of them, but that doesn’t mean I don’t like them. They capture something about myself, from a certain point in my life. I try not to regret any of them, even the one that I got covered up… Poor Sandra; the ex that never existed. As a concept, though, the term ‘sonder’ does still mean a lot to me, both because I decided to get it tattooed on me at some point, and because it did have such an impact on me upon finding out its definition.

The motivation for writing this post came at 4am yesterday morning, as I lay in bed struggling to sleep. For some reason, I decided to start making my way through some of the comments that have accumulated on the blog. I’ve had a backlog of comments which have built up over the past 2 months since I had the surgery. At first, they built up because I didn’t have the energy to respond to them. Then they continued to build up, and I continued to not answer them as it felt disrespectful to the older comments if I only answered the newer ones. Then, I had so many to respond to that I just shied away from the task. I haven’t been posting too often anyway, so I assumed that my readers weren’t taking my absence to heart. It must have been obvious that I was struggling, I thought, and that made me feel better that I had not been responding. I was struggling, so it was hardly a lie. I still am, but it’s getting easier.

Well, as I lay there unable to sleep, I decided that the time had come to start responding. I’m so glad I did. Although I had read all of the comments before, most of them whilst I was still in hospital, or only recently after I had got out, I’m not sure I had properly considered what many of them were saying. People can be so incredibly supportive – I felt really touched as I made my way through them and started responding. It got me thinking back on the concept of sonder and how profound it is.

We get so caught up in what is going on in our own lives that we can easily fall into the trap of thinking that we are truly alone in whatever struggle we are engaged in. That feeling of solitude can be detrimental to our well-being; sometimes more so than the struggle itself. I’m lucky that I have the blog, and this stops me from falling into such a trap so easily, as I have a small network of people who frequently reach out to me, with very similar experiences to the ones I talk about. It still surprises me just how similar some of the experiences that I read about are to mine, though. One person had recently commented on the blog stating that they had a total pancreatectomy (a full removal of the pancreas) only 8 weeks ago. I had the same procedure only 10 weeks ago. In the hospital (where I did suffer from feeling truly isolated and had nothing but time to dwell on my circumstances), I fell deeply into the feeling that I was alone – that what was happening to me was not being experienced by anyone else in the world. That feeling is crippling. It dragged me to the deepest pits of the human experience, resulting in an episode of delirium and some of the darkest thoughts I’ve ever had.

As I read that someone else had experienced the same surgery as me only 8 weeks ago, only a few weeks after my surgery date, I almost felt giddy. It feels sort of sadistic to admit that I was happy to read someone is going through what I am, especially knowing how difficult it has been. That shared experience goes a long way in normalising what is happening to me, though. Not ‘normalising’ in a negative way – not that you ever want to ‘normalise’ suffering from cancer, despite it feeling very normal when you see how busy the oncology wards are at hospitals – but normalising it in a way that makes it feel just that… Normal. At times, the most difficult part of going through everything that I have with pancreatic cancer is the feeling that I’m the only one going through it, due to the constant reminders from health professionals that “not many people your age get pancreatic cancer,” and the fact that “it is very rare for someone to successfully have a surgery like yours.” Even the latter, which is meant to be something positive, doesn’t feel positive when you’re still reeling from the surgery months later, struggling to manage the aggressive form of diabetes now bestowed upon you and still having to visit the wound clinic every day to change the dressings on your abdomen, because the wound still insists on bleeding to this day. Thinking that someone else is probably experiencing these same frustrations right now just makes me feel less abnormal. It is strangely comforting.

The problem with seeking out these types of shared experiences is that sometimes you find something which has the opposite effect. After spending about an hour responding to comments, I decided to look on Twitter, a platform I have been mostly ignoring since the operation. Due to me following a lot of cancer-centric pages and people on there, the algorithm has pinned me down as a real cancer-loving fellow. It is essentially all I see in my feed now. It brings a mix of personalities – the positive ones, the grieving ones, the defeatist ones, and a whole spectrum in between. Unfortunately, I stumbled across the below post at about 5am.

Considering I have scan results later today on Thursday, around 10 weeks after my surgery, this isn’t exactly what I wanted to read today, especially at 5am when I am feeling frustrated and tired. I’ve been comforting myself by saying that the scan can’t possibly pick anything up this quickly, and must just be a process thing to allow me to start chemotherapy, but this post made me think otherwise. I get that it is probably based on real experience, and I know that in most cases my cancer does come back in the form of metastasis to another part of the body, but what a bleak way of looking at things. Hoping to be cancer free should not be something worth criticising, I would hope. Let someone dream – hope isn’t always equivalent to denial. You can both hope to be cancer free and remain that way, yet know that it is unlikely to be the case. This is the world I find myself in – hoping I’ll stay cancer free, yet knowing it may, and probably will be, futile. Perhaps I’m just feeling a little defensive after an unwelcome dose of reality.

Still, the concept of sonder, where everyone has their own view of the world, and where everyone is at the centre of their own universe, can be incredibly comforting when you are going through hardship. No matter how bad things feel for you at any given moment, there is always someone going through something similar. Whether you seek those people out and communicate directly with them, through the internet or some kind of support group, or just allow the thought that they exist to comfort you, I hope it does comfort you when you are feeling low. If it doesn’t, I hope you have at least enjoyed reading about the concept of sonder, and next time you’re sitting in a traffic jam, it encourages you to think about all of those other cars and their occupants, and how they’re probably just as angry as you are about having to wait. I might even be in the car behind you…

The concept of sonder reminds me that these things that are bothering me are not unique to me. There is a whole network of others currently lying in bed, considering the fact that they have scan results for their own cancer later today. Some of them may have more on the line than me. I don’t really know what bad results would mean for me… another tumour? What would that actually mean? Different chemotherapy? No chemotherapy at all? Who knows. Someone is probably just being diagnosed for the first time this second, and I don’t envy them at all. That first diagnosis is soul-crushing. The words which trigger a plethora of existentialism, and start a new chapter in life; one of hospitals, sympathetic looks and a whole load of “I’m glad that isn’t happening to me”’s, even if most of them are probably only said in other people’s minds… Because if it isn’t happening to you, then you should be happy that it isn’t. Why wouldn’t you be? You should be glad it isn’t happening to you… I wish it wasn’t happening to me.

But I’m equally glad that it is happening to me and not to either of my parents, my siblings, my wife or any of my friends. Anyway, it is happening to them in a different way, and even that is hard for me to process. Let’s just hope that the scan is clear, so I can get on to the mop-up chemotherapy, and then push through to being ‘cancer free’, for a while, at least.

Wedding Day

godley93, , , , , , , , , , 6 Comments

It feels a little weird to sit down and write a blog centred around a wedding. Usually, I feel like I understand my role in writing the blog – I describe gritty scenes of hospitals and feeling unwell, demanding the reader’s sympathy, all to make myself feel better about the predicament I find myself in. So where does a wedding fit into a cancer blog? Well, it was my wedding, and I have cancer… or I had cancer. I’m not sure what is technically correct right now. Until I’ve finished the mop-up chemotherapy, I don’t feel like I can say I’m cancer free, but the sugeron did tell me that I was technically ‘cancer free’ before I was discharged from his care. Considering I have just had another scan on Friday, I’m not going to curse it and start ringing the bell of success just yet. That would be tempting fate. Let’s say I do still have cancer, for now.

The wedding date was Friday, September 16th. Despite there being a few days of rain prior to the day itself, the sun showed up for the event. We did personally invite it, so it would have been rude if it had shunned us. Another issue had been looming over the event, though. Rail strikes were planned across England and were majorly impacting the train services which many of our guests would be using to get to the venue. In the weeks leading up to the wedding day, I was receiving more and more messages from friends stating that their trains had been cancelled. One friend who was travelling from France had messaged me to tell me that the Eurostar train service from France to England had even been cancelled, and she was having to seek an alternative route to the wedding. Everything was going wrong. Then, Queen Elizabeth sadly died the week before the wedding, and all train strikes were called off. The circumstances were unfortunate, but they did benefit us. Perhaps the omens surrounding the wedding weren’t so bad after all.

I started the day in my own bed, alone. Anna had stayed with her family in their Airbnb. A sudden panic had come over me as I had no idea where Anna’s wedding ring was, and whether I was supposed to have it. She didn’t inform me that she was going to ignore me all morning, but I got an inkling that this was occurring when she ignored my 3 calls to her that morning. Her mum rang me back a few minutes later, fulfilling her apparent role as ‘messenger’. Luckily, Anna and her mum had the ring. It then occurred to me, however, that I didn’t know who was supposed to have the rings for the ceremony. I understood it was the ringbearer, but who was the ringbearer? It should have been our dog Lucy, but we doubted the venue would allow it. Anna’s mum, Kathy, also would not have allowed the wedding to go ahead if we had actually given Lucy the rings, so the dream was already dead.

I took an executive decision and gave my wedding ring to Keiran, my brother-in-law, and our new ringbearer. The decision was very thought out. “You can be the ringbearer,” I retorted to his complaints that he didn’t have a role at the wedding. Keiran’s thirst for attention needed to be sated somehow, so it seemed an easy fix to both problems. When it came to presenting the rings during the ceremony, he made a huge song and dance out of the whole affair, ensuring he was stood at the front for as long as possible. ‘Forgetting’ which pocket which ring was in, and taking as long as possible to dig them out and pass them over, Keiran made the most of his 5 minutes of fame. “Keiran nearly did a good job,” the registrar said at the end of the ceremony. Even she was sick of his antics; I’ve been putting up with them for 7 years now.

The day went very quickly, as everyone always tells you it does. I could barely breathe between conversations and was constantly getting dragged in twenty directions. All the nerves I felt came at the start of the day, when people started to arrive outside of the venue. Once the ceremony started, they mostly dissipated, only coming back again as the speeches began. My speech was third out of the four, and I sat trying to focus on what was being said in the speeches that came before me, but with one half of my brain focused on the impending speech that I’d have to deliver. Things went very similarly to my nerves at the start of the day, I felt incredibly nervous at first, but after a few of the routine jokes went down well and I really started to believe that I had the room on my side, it got easier. I then got to enjoy my best man’s speech with impunity. All of the speeches were great, and it was interesting to see all of the different approaches taken during them.

By the evening part of the wedding, I was starting to feel tired out. I lasted until about 23:00, though, which is much better than I thought I’d manage at the start of the day. Aside from the guilt of not speaking to anyone enough, the day went as well as we could have hoped it would. I thought that I’d suffer from a huge lull once it was all over. It has been a beacon of light ever since we set the date around 7 months ago; a safety net that was there to support is no matter how bad things were getting in the present. Strangely, I’ve felt quite the opposite. It has felt easy to appreciate that it was an amazing day, but that it is over now.

There is a comfort knowing that it all went so well, and that I am now happily married. I think it is a lesson that I have been learning over the past 12 months. As you adjust to a new standard of life, and a new reality that you exist in, one which requires you to be ever more conscientious of the fragility of it all, you learn to really enjoy something for what it is. We cannot go back and relive special days like our wedding day, we can only breathe life into those memories by chatting with friends and family about them, looking at the pictures and re-experiencing the key components – things like the first dance song or the main course that you chose. That has to be enough once the day is over. If it is not, you will mourn the fact that you can’t do it all again, and it will tarnish how you special it all was. Anna and I have been listening to our first dance song a lot in the past week. It’s been lovely.

The First Dance Song

After the wedding, we spent a night away at a very nice hotel called The Tawny in Stafforshire. We could only get one night at such short notice, which was unfortunate. It has lovely grounds around it, and we spent a few hours walking around and discovering some of the hidden treasures. We randomly found a tennis table as we walked along a path, and Anna proved just how terrible her hand-eye coordination is. It was good fun. I couldn’t take advantage of the hot tob like she could, as the wound on my abdomen is still open and at risk of getting infected. I sat next to the hot tub reading whilst she enjoyed the bubbles. It was a nice way to spend the evening and definitely made it feel special, as we would not usually do something like that so off the cuff. Perhaps we should start being more impulsive like this, but I have 3 more months of chemotherapy to get through first, which is why we hadn’t booked a proper honeymoon yet.

Exploring the Grounds

This week it has been back to the hospital appointments. On Thursday I had a meeting with a diabetes specialist nurse at Manchester Royal Infirmary. The nurse told me that she only did two days a week as a diabetes nurse at the hospital, and spent the others as a sports nutritionist for a university. As a result, we ended up speaking a lot about running and its impact on your body. I told her that I was starting to consider running again, and that I had been running throughout my first bout of chemotherapy. She wasn’t impressed. I didn’t know this, but she told me that your lungs and respiratory system are very vulnerable during and after running. With my body going through so much, with the chemotherapy, surgery, and with the upcoming chemotherapy, she told me that I should be careful. I asked her how long she would suggest waiting before starting again, and she responded that she would wait until at least 6 months after finishing chemotherapy. I was quite shocked, actually. It was a helpful conversation as it has convinced me not to start running too soon, but I’ll inevitably ignore her advice. I’m already itching to get out again and I haven’t even started the final 3 months of chemotherapy. Before I start chemotherapy, however, I have to receive more scan results.

On Friday, I had another CT scan at The Christie, checking for tumours in my body. It is never fun attending scans, and the period in between having the scan and receiving the results is never nice either. I’m still feeling very in the middle of the treatment, so I don’t feel too nervous about it. I think it is quite unlikely that a tumour would have taken hold in the time since my surgery, so that makes me feel better. My life hasn’t really returned to normal anyway, though, so I don’t feel like I have very much to lose right now. If I heard another tumour had started to grow somewhere, it would just mean more fighting. I don’t feel like I’ve left that mode in my mind yet, so fighting on would just be a continuation of the current status quo. It’ll be much harder to cope with the scans if I get to 2 years clear, and I have established a ‘normal’ life again. That will be when it risks completely unturning everything again, like my original diagnosis did. For some reason, I feel like a lot more hangs in the balance in that situation. Perhaps this is all just me rationalising why these results aren’t too important, making me feel better about them. Who knows. For now, it’s back to work, back to scans and back to the ‘real’ world. Anna and I had a few days where we treated ourselves, but it all needed to end at some point.

Sorry for disappearing on the blog again – it was a very busy period. I’ll be back to it properly from next week, complaining about having my blood taken and delving into all the doom and gloom of having/not having cancer. I have so much complaining to do about diabetes that I’m considering writing a book titled ‘Don’t Lose Your Pancreas’, which would be all about how fucking annoying life gets if you do indeed lose your pancreas. Maybe I should call it ‘Dancreas Pancreas’, actually. It sounds like a spell from a Harry Potter book, though. Maybe I’ll write some fan fiction where the world of diabetes crosses over with the world of Harry Potter. Instead of having a scar on his head, Harry could lose his pancreas and then have to manage his blood sugar whilst he tries to fight 3 headed dogs and woo Ginny. That’s probably the only way it’ll actually sell. At least I’ve got a plan for the book now. That’ll distract me from the fact that the wedding is over and I’ve got scan results coming up on Thursday…

Another Day, Another Hospital Stay

godley93, , , , , , , , , , 5 Comments
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)

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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!