Type 1

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…

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!