Positivity

Scan Results & The Death of Summer

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You blink and the summer is over…

It didn’t feel like it had been so long since I last wrote a blog post, then I checked and saw that it was in July. In my defence, it was at the END of July, but it was still a while ago. I guess some of that feeling comes from the fact that I know I’ve written things for the blog in the meantime, but I haven’t liked any of them enough to post, or the idea hasn’t developed enough to feel that the post was complete. My drafts folder is looking more bulked up than ever, boasting an impressive 16 posts which now live in there, untouched by the human eye and unlikely to ever be pondered over by anyone other than myself.

Occasionally, I humour them by opening a few of the draft posts and seeing what I thought it was worth writing about that day. I giggle to myself as I read the words, sometimes finding a sentence that I actually like or think is well written, but mostly just guarding myself from the feeling that I should have really committed a little more time to each of them, and allowed them to flourish into something worth reading. It is difficult to see them as anything but a snapshot of a feeling I had at a time that isn’t now, which I sometimes struggle to associate with. That is why I mostly write them off as nonsense, but I’m sure they could be valuable in the future. They’re usually based on an Ok idea, I just get bored somewhere in the writing process and decide that what I’m saying isn’t interesting enough to share, or comes across too strongly when I look at it the next day with a fresh pair of eyes. Who is to be the judge of that, though, if I leave them derelict in the draft foder? Clearly no one reading this blog as you’ll never get the opportunity to read any of them. It is only my own ego which sits in judgement as I read back through them, finding it too try-hard or too emotional to acknowledge them as anything valuable. Some of them are just boring, though.

I’m glad to report that there isn’t much to report, which is the best kind of report to receive when you’re trying to survive cancer. Bastard fucking cancer with its hard ‘K’ sounds. KAN–SER. It sounds a little like the words “Can” and “sir” when you overemphasise its pronunciation like that. It makes me think of the classic line from Oliver Twist – “Please Sir, I want some more,” – which then seems totally out of place in this context, as I don’t think anyone would be begging Sir Can for some more if he was dishing up what he served me. I’d actually like a refund, if possible – 1 pancreas, 3/5s of my large bowel (I still find this a very unusual amount of bowel to report to have taken – wouldn’t you just say half to make things easier for everyone?!), 1 bile duct, 1 gall bladder etc etc. I’m not actually going to reel off a shopping list of the internal organs I lost in the operation; especially as it all resulted in 1 tumour also being removed, which does justify all the other stuff that went missing. Still, the list of things taken is eye-watering. Speaking of the tumour, I had some scan results a few months ago…

In one of my last posts before falling off the face of the internet, I said that I’d been to The Christie for a scan. The results of that scan took a few weeks to get back to me. No follow-up appointment was scheduled, and then when I received a letter informing me that it was booked, the date of the appointment read ‘November’. Usually, the team strive to give you your results about 7 days after the scan takes place, so this seemed fairly irregular, to say the least… I’d had the scan in July, after receiving a call from The Christie to request that I go in early, as they were very busy over the next couple of weeks. It is because of this conversation that I didn’t feel very alarmed that no follow-up appointment had been booked yet, but upon learning it had been booked for November, I did grow a little concerned at the lack of alertness. I played some mental gymnastics with myself – the conclusion I drew was that they had clearly reviewed the results, seen nothing to worry about, and put me to the bottom of the priority queue, where I was happy to be. There was a niggling feeling that I was expecting too much of the overstretched NHS, and that they hadn’t looked at the results, and wouldn’t until my appointment was due. I was wrestling between those 2 opposing theories.

Over the next few weeks, my mum would regularly bring up that I must contact The Christie and ask them whether the appointment was correct, or if it was a mistake. I was pretty confident it was a mistake, but I was also pretty confident that I wasn’t in a hurry to get the results. I’ve spoken before about how getting the results of a scan can feel like the critical point, as if receiving the results are the point in time where the problems begin. The problems beginning are obviously, in reality, when the damn problems arise physiologically in the body i.e. when your body gets bored of being cancerless and accepts another invite to the tumour’s cancer party – a ruse you really hope your body won’t fall for again, but one which you know you need to keep an eye on, as your body is a guilable bastard. The scan only alludes to whether there are any problems, and allows one to start addressing those problems (by ‘one’ I actually mean ‘the oncology team’ – all ‘one’ does is sit there absently through the whole affair and feel upset a lot). Still – it takes some mental effort to pick up the phone and explain the situation, effectively rerouting the collision course of your life back to the hospital, as opposed to anywhere-else-in-the-whole-world, which is much preferable. I think it took me about a fortnight before thinking that I was being very stupid by not making the call.

So I did it. I got through to the switchboard and asked for the scheduling department. The scheduling department told me that they would get in touch with the HPB team as their department does not organise any follow-up appointments, and only scheduled chemotherapy appointments. She told me that she would ask the team whether the appointment had been incorrectly scheduled and get back to me. The operator agreed that it seemed irregular to receive a follow-up meeting so far in the future once having a scan done, which was encouraging to hear. But my theory about the results definitely being good was out of the window, so that didn’t feel so encouraging.

Despite knowing all of this made logical sense, and fully assuming that the meeting would be moved forward, I was stunned when I received a phone call back about 30 minutes later from the same scheduler who askied me if I could attend the hospital the following Thursday. All of a sudden, I was a nervous wreck who wanted this random scheduler to console me in ways that I knew she was not able to.

“Do they think something is wrong? Why have they decided to prioritise me?” I asked, trying to mask my nervousness, but doing a very poor job of it.

“I’m not sure, Sir. They just said that they need to give you the feedback from your scan. Try not to worry about it. Can you make the appointment?”

I agreed that I could make the appointment, then babbled on a little bit more about this and that and cancer and reoccurrence and tumours and diabetes and blah blah blah. She was getting a live blog post – lucky her!

At some point the call ended and I felt regretful for pursuing the issue. Before, I was just a guy with an appointment at a hospital in November. November was 3 whole months away – 3 months!! 3 more months of being cancer-free! But I’d decided to schedule my diagnosis to be earlier. What an idiot. Who does that? I then felt weird reflecting on how I had reacted upon learning that I had an earlier appointment, especially as this was the exact result I had expected, and that knowledge is what had driven me to make contact in the first place. It didn’t make sense to have a scan in July and results in November – a lot can happen in that timeframe which would make the results irrelevant, so of course it was going to be brought forward. Still, the doom clock struck 0 and I reacted the way that I did. It is what it is. I’m sure it is rational in its own irrational way. Two amazing things happened at the hospital on the day I got my scan results.

Amazing Thing No 1

The first of those things happened as I sat there, waiting for the electronic appointment screens to summon me into a room. Me and my wife were in the usual mood that the hospital brings upon us – one characterised by quiet concern and looming doom. We speak little and do our own thing, mostly…

“Excuse me – are you Dan Godley?” The voice came from behind my chair. I turned around to see a woman standing in front of me with a neat smile painted across her face. I confirmed that I was indeed Dan Godley, and she proceeded to tell me that she was a reader of the blog.

We spoke at length about her diagnosis, stage 1 pancreatic cancer, and the difficulties of dealing with it all. There’s something magical about this blog – people who read it know a lot about me, probably more than I realise, yet I know very little or nothing about them. I often forget that I’ve written about something until I go to tell someone about it and I find that they finish my sentences for me, or ask a leading question which preempts the next part of the story. It happens a lot with my friends and I always feel a little silly, as if I’ve personally told them those things 5 minutes ago but then forgotten.

The fact that people know so much about me seems to disarm them of the normal filters which they may place around their emotions, and I find people speaking very frankly to me. This conversation felt a lot like that, with us sharing intimate details of the lows, the inescapable panic which comes and goes, the fear of receiving scan results and the difficulty in getting through chemotherapy, especially on the harder days. It was really lovely, and 20 minutes flew by in a flash – something which doesn’t always happen when you’re waiting for scan results.

Something she said really stuck with me… She was worried to see me at the hospital after not seeing any blog posts for a few weeks, thinking that I may have had bad news. It made me worry about the community on here and what they must think given the silence. I felt very motivated to write something that evening, but I didn’t find the time. That excuse starts to lose water when I consider that I got my results in mid-August and it is now nearly October. But I’m writing now. That’s better than nothing, right? This leads me onto the other amazing thing that happened at the hospital that day…

Amazing Thing No 2

Even for The Christie we were waiting a long time that day. I wasn’t called into the room until 2.5 hours after my scheduled time. It was about 17:15 when I was finally sitting in the consultation room, waiting for the oncologist. This part of the process always takes at least another 30 minutes, and it is the most nervy part of the day. Anna and I usually sit in heavy silence, listening to our heartbeats increase every time someone traverses the coridoor past the open doorway of the consultation room. The only thing which breaks the silence is the sound of the oncologist’s footsteps as he enters, solemnly smiling and closing the door.

Around this time there was a general shortage of Creon, which is the supplement that I have to take to allow my body to digest fats and other nutrients. Without it, my body cannot absorb a lot of the key nutrients from food, so it is critically important to me. Despite it being so important to my health, I cannot get enough of it to build up a stock as the pharmacy will only prescribe me enough for the next month, and the GP won’t sign off an allocation of more than this amount. That means that when I put in a prescription request for the next month, have it approved by the GP, then go to the pharmacy to try and pick it up, it is critically important that they have it. The problem is that they don’t always have it. I show up at the pharmacy only to be told that there is an issue obtaining it, and I have no backup plan as I haven’t been able to build up a store.

What I do know is that specialist centres get priority of specific medication, and The Christie always has a bulking supply of Creon. They had written an emergency prescription for me that day, but I had to wait for a GP to sign it off before I could pick it up. The pharmacy closed at 18:00, so upon being called into the room, the nurse encouraged Anna to go and pick up the medication shortly or we’d miss them. We waited for a while in the room, but it got to about 17:40 and there was still no sign of the oncologist, so I told Anna to go and get the prescription before it closed.

Obviously, about 2 minutes after she left, the oncologist walked in, armed with a smile, which could mean anything from “It’s good news,” to “try and stay calm, but I regret to inform you that you’re totally fucked.” I am pleased to report that it was the former and not the latter!

Not only were there no signs of a tumour still, but the enlarged lymph nodes which had been concerning the medical team in the previous 2 scans had returned to a normal size and were no longer visible on the scan. It was a huge relief. I don’t know how many times I need to receive good news before I stop presuming that everything is going to go wrong all of the time. Maybe that’s just how I’ll always feel about things now. I find it easier to enter these situations with my walls raised high and scepticism flowing freely so if it is bad news, I am somewhat expecting it. The problem with that scepticism is that it doesn’t only exist when attending scan results. It becomes a cancer in its own right that permeates through the rest of life.

None of what I am about to say here is new, but I’m going to repeat it anyway… Although I would describe myself as a fairly positive and enthusiastic person, I feel like I struggle to engage with the world in the same way that I used to. My ability to feel positive emotions has been blunted, and I’ve found a strange ether that I exist in, still feeling more certain than not that cancer will kill me, but not having quite the same ability to process that feeling in a healthy way. When I was on chemotherapy, I dealt with it all fairly well. It didn’t matter whether I had a week, month or year left – my focus was on being happy. It still is my focus, but executing it is a difficult feat. The looming shadow which cancer casts over your life – one which impacts your relationships, many aspects of your lifestyle, and a host of other things – is hard to escape from. Trying to make sense of all of that, as if it is normal, is difficult.

All of this sounds more melodramatic than I mean it to be. I’m not suggesting I am never happy or that I am unable to enjoy life with a positive perspective at all. I manage those things, but they are more difficult to achieve, and almost impossible to sustain. I’m sure that was true of my life before too, even if I can’t specifically remember it now. I am aware that the difference between ‘People who are happy’ and ‘People who are unhappy’ is not a straight split between those who have not had cancer and those who have, although I suspect those who have do find themselves being a little more unhappy – it would be worrying if they weren’t. The grass is always greener, and it is useful to remind yourself of that fact.

In many ways, that difficulty dealing with the reality of life now stems from a return to a more normal set of circumstances. I’m back to committing myself to work properly, hanging out with friends and nurturing my hobbies (I am cooking and baking for at least 2 hours a day at the moment, which is a little excessive). It’s a welcome set of circumstances to be, and I remind myself that I am grateful to be where I am every day. Knowing that I am grateful doesn’t erase all of the other feelings, though, so I still have to deal with them.

Yet under these circumstances, I still have a very good life. The summer was wonderful this year. I used to prefer winter because the long evenings felt comforting to me, but this year I found myself really enjoying the long hours of daylight. The transition back to darkness at 20:00 is a little disheartening, but I feel ever more confident that I’ll still be around to experience the longer days again next year. That feeling of hope is nice, and I try to dwell on that more than the negative feelings. Despite the bad dreams, the sleepless nights and the strange pains I get in my abdomen, my quality of life has reached a level I doubted it ever could again. I like to go walking, to eat varied food and even find myself enjoying baking, and enjoying the spoils of it. My new thing is trying to make perfect croissants – I’ve had 2 attempts so far, and the second ones were far more convincing than the first.

Croissants Attempt 2

I think the most productive mindset any individual can have is to just have goals in your mind and stay motivated. I don’t mean far reaching, difficult goals. I’m talking “find a nice lemon cake recipe and make it after work,” and “walk my dog for an hour today.” It doesn’t feel like a lot, but it keeps things ticking. I got through chemotherapy using that method, and I’m still alive today, so it must be worth something.

Another Cancer Story…

Finally, I’d like to give a big shout out to my friend George. He was diagnosed with testicular cancer this year at the young age of 27 (he beat me by 2 years – that bastard; I can’t say I’m the youngest to be diagnosed in our friendship group now). This is the same guy that weeks before his diagnosis had sent a video of him to me where he was dancing to Mr Brightside by The Killers, only to replace the lyric ‘It was only a kiss’ with ‘It was only a cyst’, referencing my original diagnosis – a cyst on my pancreas – which ended up actually being a big ole tumour. The video still makes me laugh a lot every time I watch it, despite the events which occurred just a few weeks after this took place. Unfortunatly for him, he was also told it could just be a cyst, but was then told that it was cancer.

Luckily, his treatment was straightforward – if having a testicle removed can be considered straightforward. The surgery went well, and he did not even require chemotherapy (HAH – I definitely win on the severity of diagnosis and treatment, so it’s 1 all). He was also treated at The Christie, the hospital where I have received all of my treatment.

To show his appreciation to the hospital, he cycled from the village we grew up in, to my flat in London, AND BACK AGAIN, all in 1 weekend – this weekend! It is just under 200 miles EACH WAY. Absolute psychopath.

For his efforts, he raised over £2000 for The Christie, and earnt the respect of everyone who knows him (and probably many that don’t). It is a phenomenal achievement, and we’re all so proud of him. Please enjoy the video of him arriving at the flat on Saturday night below!

George Arrives in London!

Thanks for sticking with me, and I hope all of the readers of this blog are doing well! I’ll try and not leave it so long before the next post but if I do, know it’s. forthe best reason – if ANYTHING goes wrong from a health perspective, I’ll be straight on here to complain about it! I’m going to sign off with another picture of Lucy, because I have them all over my phone and I feel a burning desire to share them with anyone I can.

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…

On… Dogs

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I’m sure this isn’t surprising to read, but dogs are disgusting. I’ve seen a dog throw up all over the floor and then immediately start eating it, only stopping because its owner dragged it away by the lead. It didn’t seem to understand what the problem was. Despite behaviour like this, many of us welcome dogs into our homes (and some of us even allow them into our beds). What’s the deal with that? Well…

I come from a family of 6 children. We’re all older now, with my eldest sister in her mid 30’s and my youngest brother in his early 20’s. I’m not sure if the big family experience has put everyone off, but none of us have had children yet. We have managed to acquire enough dogs to start a small kennel, though… six of them, to be exact. My mum claims 2 of that total, then my eldest sister has one, my other sister Josie has another, Anna and I have our little Lucy, and my brother Alfie has an utterly insane cocker spaniel, who also happens to be insanely lovely. My sister Josie’s dog weighs nearly 50kg, meaning he could either count as a young adult or 2.5 normal-sized dogs; because of him, it’s probably more accurate to just say that there are 8 dogs in our family, or 5 dogs and a horse/lion/shark hybrid. He is actually a sweetheart, but he has a habit of running straight at your genitals when he sees you, which never fails to be disconcerting. He also smiles when he is excited, but it’s easy to misinterpret that as being akin to the hyenas laughing in The Lion King when they do something evil and sinister.

Moose and Lucy

An unfortunate consequence of having so many dogs in the family is that when we have gatherings, the house is even more chaotic, which is hard to believe as my family are already very loud. It stresses out the owners of the dogs enough, but there are people in my family who are less fond of dogs. My brother Greg and his girlfriend Kate, who are not fond of dogs and don’t plan on owning any dogs, have to endure an army of them every time that we all venture home for some special occasion. I’m sure it would be just as bad, if not worse, with that many children running around, but you can just give a child an iPad and you won’t hear a peep out of them (probably) ((I’m not a parent)). The dogs just wind each other up, get in the way, bark, fight and everything in between. If a single child is thrown into the mix now, it might be enough to send my dad into exile, buying a shack in rural Norway and never revealing his location to any of us again. If another dog is added, the result might be even worse.

My dog was purchased for me as a surprise present from my family. I’m told that it was my eldest sister Becky who organised it, and many people generously donated towards the fund, both from my family and beyond. I had just been diagnosed with cancer and was facing the daunting prospect of chemotherapy. I’d seen a few notifications from a Whatsapp group called “Getting It Dan” on my wife’s phone, but I thought that was just their private chat to ask each other how I was getting on etc. Little did I know that they were planning the best surprise ever. Thank you by the way Becky, you really did make that horrible period a billion times better and have enriched my life immeasurably, to this day and beyond.

Becky, Lilah (My Mum’s Miniature Dachshund) and Her Dog Gus

They got me a little miniature dachshund called Lucy. Her coat is black with a dappled grey pattern all over. The name of her type is ‘silver dapple’, and they’re striking things. Her impact on me was immediate. From the second I walked into my front room and saw my family sitting around in anticipation, then saw her little face looking around the room helplessly, I was in love. She would ride in the car with me to the hospital when I was going to chemotherapy, then be waiting in the car when I came out again. She always wanted to sleep during the day, just like I did, whilst my selfish wife was busy working. On my bad days, I’d lay in bed with her in my arms, only to wake up 2 hours later and realise I’d drifted off. Lucy didn’t mind; she would be curled up, snoring in my arms.

Lucy played a special part in my life from the second I met her. If you have read this blog at all, you’ve probably seen pictures of her all too often. I like to slap them at the top of posts for no real reason, other than because she’s far cuter than me, and I have way more pictures of her than pictures of things relevant to the topics I discuss. Besides, why does it need to be relevant, when it’s reliably adorable? Exactly. It doesn’t. That’s why good-looking people don’t need to try in life – people just nod along to whatever comes out of their mouths, no matter what nonsense it is. Lucy has that gift, and she lives at the top of many of my posts.

She likes to do this thing where she looks up at me with the whites of her eyes showing at the bottom. She will stare deep into my eyes, especially if she wants something. I’m not sure if these tricks are a Darwinian trait which we’ve selected for since domesticating dogs, or if it is just a natural mannerism of their species, but my god it’s hard to resist. She does it when she wants me to feed her in the morning. My wife is better than me at resisting it; I just start throwing food at her and hugging her. Anna tells me that we have to wait until 9:00am to feed her, but by 8:30 I’ve usually caved. Anyone who can hold on until 9:00 should automatically be thrown into prison – they’re either a psychopath or a reptilian disgusting themselves as a human. But anyway, enough about my dog, let’s get back to the argument that dogs are awesome.

Dogs are pretty great. They’re much easier company than people. People want to talk about their day at work, how their friends have been ignoring them recently and how their toenails are too long, but they can’t be bothered to cut them. Dogs don’t have jobs, only want friends so they can sniff around their arseholes and chase them around a park, and couldn’t care less about the length of their toenails, though they can start to become problematic if they aren’t groomed appropriately.

My best friend’s dog is so easily amused that she doesn’t even require you to buy her a tennis ball; she finds a pebble on the ground, excitedly runs over to you with it in her mouth, drops it in front of you, then jumps about in anticipation of you throwing it for her. She finds more enjoyment in a single pebble than Gen Z manages to find in the entirety of their school life, social life, and family life combined. It is incredibly sweet to experience. And that isn’t the only advantage that dogs have over humans when it comes to being good company.

No human has ever been so excited to see me that they’ve lost all control of their bladder, but my dog manages to do it every day when I get home from work. There have been times when I’ve gone to the shop for a few ingredients, walked through my front door 20 minutes later with the various bits and bobs in hand, and Lucy has responded as if I’m returning from an active warzone after years of service. Her tail wags uncontrollably, she hops backwards whilst looking up at me in sheer disbelief that I’m actually back, and she stands on her back legs, trying desperately to reach up to me with her front poors. It’s bittersweet; I love the fact that she loves me so much that she can’t stand to be without me for half an hour, but I also like it when I don’t have to clean up urine from the floor. It would be nice for a human to occasionally show the same level of excitement upon seeing me entering a room, but they never do. A human could clean up their own urine too. And they walk themselves… Maybe I should consider getting a human next.

Since I started to bake more, which is basically from when I fell ill and struggled to leave the house as easily, I’ve occasionally let her lick the spoon before I wash it up after making a sweet treat. One time, I made the mistake of giving her whipped cream, and now she runs into the kitchen whenever she hears the loud hum of the standing mixer at work, anticipating that there will be some sugary snacks being made by an idiot who is willing to give them away for the fee of just one stare. It’s terrible, I know. I don’t give her chocolate as it is meant to be poisonous to dogs, but she gets the occasional lick of some vanilla cake batter or a little corner of flapjack, so long as it doesn’t have raisins in it, which are also poisonous to dogs. It’s mostly innocent, but it probably isn’t the best way to treat a dog. She also has her own Barbour jacket, but whatever, it looks cute.

Even more unforgivable is the harness that my wife purchased for her a few months ago. It is a small leather thing, which looks far more like a BDSM prop than a harness. Whenever strangers stop me in the street to stroke her, I try and preemptively bring it up as I know that they’re thinking it anyway. Better to beat them to it and try to get an excuse in. “The harness makes us look like perverts, but it was the only one in the shop that would fit her,” I say, knowing full well that it barely fits her, so the excuse doesn’t really hold up. In actual fact, my wife is obsessed with it because she says that it is “made for sausage dogs,” and that it “actually fits her.”

“The woman. in the shop measured it and everything,” she says. Clearly, my wife is too trusting as a person, and the person working in the shop didn’t have any stock that would actually fit her, so just said that it was the perfect size for her, after pretending to take a measurement and doing her best to keep a straight face as she put it on her, whilst saying something like “wow, it’s a perfect fit!” I bet she is still laughing to this day about that sausage dog who walked out of the shop looking like she was on her way to a Rihanna music video shoot.

Lucy And Her Harness

Now, I know there are people out there who don’t care for dogs, and who find this entire thing utterly repulsive and borderline creepy. To those people I say, wait for the next time that you have a really, really terrible day, then find a little sausage dog in the street and pick it up, embrace it like it is your own child, and see how it makes you feel. Tell me it doesn’t make you feel better… You can’t! I truly believe it is impossible to not feel just a little bit better for doing it, and sometimes that is the little boost that you need to get through another day.

I’m not going to suggest that without Lucy I wouldn’t have found a way through chemotherapy, or wouldn’t have survived as long as I have so far, but I can’t confidently say that those things aren’t true either. Not to take anything away from my incredible wife, family or friends, but they all have their own lives too and were suffering through the situation just as much as I was. Lucy might have had some intuition as to the mood in the room, but she goes through life unaware of the extent to which my life was in danger during that period. She’s just happy to be there, going out walking, sleeping on the sofa and howling with me in the morning. She has added so much value to me and my wife’s lives, as well as so many other people around us, and that is why dogs are amazing.

Howl Howl Howl

Don’t believe me? Well here is an obsessive amount of proof. Bon voyage!

Diabetes Anonymous

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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.

On… Email

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It is difficult for my generation to understand how the world worked before emails became a thing. As a 30-year-old, I remember what things were like before email was so prominent, but it was during a time when I wouldn’t have really used it anyway. Despite the fact that many young people now have smartphones before starting puberty, I suspect that few of them are using them to check their emails. Email is a boring medium with minimal intrigue to the Tik Tok generation. They don’t realise how good they’ve got it – having access to relentlessly addictive short-form content, which burns through brain cells like wildfire. When I was young, we had to play with Tamagotchis to get our digital fix, and we’d only speak to each other when we were physically together in school.

Email reminds us of a simpler time when we were grateful for any medium of communication which allowed us to speak without a delay of 3 days or more. Although the letter is often romanticised as a beautiful medium, it is annoyingly slow. It is also error-prone. Letters are easily lost, and they cannot be traced so easily. Emails build on each other, documenting what came before, making it easier to remember what the hell you said when you hurled that email over a few days prior. When reading a letter, you basically have to re-write your letter in your head as you read the response, or it won’t make sense.

Deleted emails go into a ‘Bin’ folder, so one can mull over the decision for a few days. The equivalent action in letters would be burning the paper, which probably feels more cathartic, but is frustratingly permanent. Deleting emails is anti-climatic in comparison. Burning letters contains drama and suspense, whereas you can scroll through your emails ticking little boxes then archive the entire set – how very boring. It is one area where the letter excels in comparison to email. Even setting the computer on fire won’t erase emails. They’re like the Freddy Kruger of communication.

Just as burning a letter is permanent, so are the etchings you make on the paper (assuming you are an adult who uses pens and not pencils). For the perfectionist, writing on paper is like walking a tightrope. Each successful word and sentence formed only adds to the tension, as a single mistake can lead to the undoing of the entire piece. No one likes to see a letter or word scribbled out, but there is no way around it when writing a letter. Your inadequacies are hung in front of your like fairy lights, illuminating the fact that you can’t spell ‘necessary’ correctly, always adding an extra ‘c’ and leaving out an ‘s’.

I created my first email address when I was about 11 years old, and it was something like down-with-kevs@whatever.com. ‘Kevs’ was a synonym for ‘chavs’ when I was younger. Wikipedia defines a chav as “a young person of a type characterized by coarse and brash behaviour.” I was a skater when I was that age, which meant that I used to hang out at different spots around the village all day, being really bad at skateboarding, but still enjoying it all the same. The chavs were seen as the enemy. They were the other group commonly seen hanging around, but we had a good reason to be where we were – we were skating and it was functional – chavs seemed to be there primarily to antagonise others. We were the easiest targets to antagonise, as they were usually older, and had a hunger for thuggery.

One time, when I was out skateboarding, a big group of chavs walked past us and kicked a ball at us. It hit my flip-phone out of my hand and I shouted, “Why the f*** did you do that?” They didn’t like this. Three of them walked over to us shouting some stuff. It was like the hyenas from The Lion King emerging from the shadows in a small pack. One of them grabbed me by the neck with one hand and tried to take the phone out of my hand with the other. I wouldn’t let go. Frustrated, he punched me in the head and walked off. The rest of the group were laughing. I was about 11 and they were at least 16, if not older. From then onwards, I had a potent dislike for people who I classed as ‘chavs’. So, of course, I had to use my private email as a political statement in protest against them. It deeply affected their image in society, and you seldom hear the term ‘chav’ used anymore, thanks to me. My email address single-handedly eliminated the group entirely, and they’re now considered a fringe group at best. You’re welcome, world.

I didn’t grasp the purpose of an email at that age. I can’t remember how much I used it, if at all, but by the time I was actually using my email and signing up for accounts on websites and other services, I realised that I needed to create a new one. My new email address is a variation on my name and some letters – very vanilla, just like an email address should be. No one is hiring down-with-kevs. Down-with-kevs isn’t winning any online giveaways or being put forward for any Nobel Peace Prices. Dan Godley isn’t either, but ‘down-with-kevs’ Godley definitely isn’t. The more successful you are in whitewashing your individuality, the better off you’ll be in the world. Create a boring email and use it to apply to boring jobs so you can earn boring money. Learn to loathe marketing lists, but never enough to unsubscribe from them. Welcome to adulthood – now check your email!

It is truly difficult to imagine how the working world worked pre-email. A hustle of people sat in offices, accosting each other at desks and feigning over endless stacks of paper. ‘Working from home’ was probably considered an oxymoron; something only possible in Sci-fi novels, in the same category as aliens or deadly mushroom viruses that turn people into zombies. Now, most of our working lives revolve around monitoring our inbox in one way or another. Though, there is a disadvantage to email… It leaves a paper trail more permanent than paper even manages. Paper is barely worthy of being included in the phrase ‘paper trail’ with how easily paper can be discarded forever. Paper has the advantage of conveniently going missing when the right people want it to. Most of us have watched a Netflix real crime series covering some untoward case, usually in America, where the key evidence went missing from the evidence room, or where a standard procedure wasn’t followed, but no one seems to know why, as the reports have all gone missing. Emails can be retrieved, to the detriment of corporations and dodgy folk everywhere.

I recently read a piece on Steven Cohen, the man who founded S.A.C Capital Advisors. In 2013, S.A.C was fined an astonishing $1.8 billion for allowing insider trading at the firm. Steven Cohen perpetuated a culture where insider knowledge was considered getting an ‘edge’ over your competitors, both inside your organisation and outside in other organisations. He encouraged the behaviour but recognised that he shouldn’t encourage it, so was notorious in the organisation for not wanting to do things over email. He preferred other, less traceable means of communication, such as a swift whisper in the ear, or a chat over a fancy meal, which probably cost more than the average person’s monthly wage. Still, even Steven Cohen’s despise for email wasn’t enough to stop the emails from doing him damage. Emails exchanged within the organisation were used as evidence in the case against S.A.C. Eventually, he was forced to close it down, but don’t worry, Steven transferred the business to a new name – Point72 Asset Management – and he isn’t doing too badly. In 2020 he purchased the New York Mets. I wonder how he feels about email now… angry, I assume.

My best friend Luke went through a period where he decided that he was going to “bring emails back.” I’d frequently look at my inbox to find an email from him, containing various images off Reddit, and a few updates on his life. He was refusing to use smartphones at the time, but couldn’t resist the cultural drift into the modern age. “There must be a way to share these memes I look at all day,” he must have said to himself, before realising that email could solve all of his problems. Then, my friend George decided to do something absolutely amazing, and shipped his motorbike to Alaska in North America, to then fly out himself, meet his bike, and spend the next year or so riding it all the way south to the bottom tip of Argentina. Along the way, he logged in to a plethora of free Wifi services, ranging from hotels to cafes to superstores etc. Not wanting to use his own email, he decided to use Luke’s. Much to Luke’s dismay, he started receiving a steady stream of “Thanks for registering for the Wifi service” emails. It was a nice way to keep up to date with where George was, but he still receives emails from random establishments in South America and probably has scammers crawling over his emails like digital cockroaches. He has since got a smartphone and has given up bringing emails back. Now he is obsessively wearing dungarees instead.

Despite its shortcomings, I like email as a medium. It is much less obnoxious than its instant messaging counterpart. Email has a natural stagger to it. We seldom send an email and expect to receive a response in a matter of minutes. At best, we give it an hour, and even that is quick. Email is naturally asynchronous in a way that instant messaging is not. Instant messaging seems to tap into some social faculty that is defunct in our brains, one which readily believes that someone hates us if they don’t message back within 5 minutes of receiving our message. Sometimes, if I have something that I think is really important, I’ll send it on Whatsapp, then sit and watch the screen, wondering why I’m not receiving a response, as if that person is physically sitting in front of me and is ignoring me. I have to remind myself that it was my decision to message them and that they have no obligation to get back to me in any timeframe, let alone 1 minute. Email strikes the right balance – you’re there and you can respond, but no one is pressuring you to. It’s all chill – send an email, have a coffee, read a magazine, check your email again – no response; no problem, I’ve got Whatsapp messages to attend to –

“WTF!!!!!!!! I’VE EMAILED YOU FIVE ENTIRE MINUTES AGO AND YOU HAVEN’T RESPONDED. AM I NOTHING TO YOU? DO I EVEN MATTER? DO YOU EVEN CARE ABOUT ME?”

Emails combine the speed of digital communication with the penance of thinking about what you say, not just throwing out whatever you feel like at any given moment, which is what instant messaging services seem to encourage. There is a hint of drama when you refresh your inbox on your phone. A ‘whodunit’ moment, where you wait to see whether your parcel has been delivered, or if someone has added you on LinkedIn. It is a magical few seconds where anything is possible, which is quickly deflated when the only things that appear are marketing materials for a clothes website you purchased a present from 4 years ago. When you’re feeling brave, you can venture into your Junk folder and read about the penis enlargement surgeries, then run away from it again because you’re worried that you’ll accidentally click on the dodgy link. Your inbox is your fortress of communication, from which you command the world. You might have even received a link to this blog in your inbox, which makes it all the more exciting to write. If you didn’t receive it in your inbox, perhaps you should subscribe to it… just a thought…

On… Memory

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Josie, me and Keiran and Glastonbury – 2019

I’ve always had a bad memory. I can’t remember if it was bad when I was really young, because I don’t remember being really young, but I’m sure it’s been a problem for a while. When I hear people say that their first memory was when they were 4 or 5 years old, I assume that they’re lying. I’ve even heard people say that they have vague memories of being even younger than this, but I outright refuse to believe such nonsense. How can someone else remember being an age where their entire diction was no larger than 200 words, yet my first memory is of being 28 and being diagnosed with cancer? But in all seriousness, I think my first memory is probably when I was about 10. Even that might be generous. It really is that bad. I have vague feelings that I remember things, but they don’t translate into anything useful. I think I remember going to school in Hemel Hempstead when I was probably 5 or 6, but if I’m being honest with myself, I think I’ve just seen a picture of myself from around this time, and am misinterpreting my memory with the scene in that picture.

A few years ago, I read a book (I can’t remember what book, and that isn’t another joke) written by the man who holds the world record for reciting the most numbers of Pi accurately from memory. It I remember correctly, which I probably don’t, it took him over an hour of standing at the mic and calling out number after number before he got one wrong. The story blew my mind. Not because I was impressed that someone could do that, although I was quite impressed, but because it was even a thing. If your memory is that good, shouldn’t you be using it for something useful? Why is remembering Pi useful? Why is creating an entire event around it useful? I guess not everything has to be useful. If I could remember something that well, I’d want to make a spectacle of it. I bake cake after cake at the minute and I’m diabetic, so I eat very little of any of them, feeling too guilty to do so. That isn’t very useful. It’s fun, though. He probably thought reciting Pi was fun… It probably is fun when you can do it that well.

Fortunately, we don’t have to remember anything these days because we have Google. For example, I just Googled ‘Book man recite most digits Pi’. If I waffled like that to a stranger in the street, they would assume that someone had been filling my water bottle up with Absinthe. Luckily Google understands me, and according to its limitless knowledge, the book I read was Born On a Blue Day, by Daniel Tammet. I can hardly remember anything about it now. It begs the question – was it a total waste of time to read it if I don’t remember anything from it? Well, hopefully not, as I don’t remember most of the books that I read. Additionally, I don’t remember a lot of things that I have done in my life. If everything I don’t remember is meaningless, then I am notionally disregarding 99% of my life on the grounds that I don’t remember it, so it was irrelevant. Even people with phenomenal memories, like Daniel Tammet, would be disregarding a good 90% of their lives based on this principal, so I guess remembering something isn’t what gives it meaning. The important things probably directly influence you, in a way that is material and tangible, but everything else just helps to shape you in a more subtle way.

That leads me to wonder whether there are things that my brain has gone to great lengths to forget. Sigmund Freud would have emphatically told me that it has, as has everyone else’s. He is a little more successful than I am, so I would tend to agree with him. With regards to one of his more controversial ideas, the Oedipus complex, I’d be a little more cautious to agree. That theory seems to have not stood the test of time quite so well. Sometimes we reject something because it is too truthful, and could present us in a particularly bad light, one that we don’t like to admit about ourselves. Our sense of self-preservation kicks in. We may struggle to accept criticism or, upon hearing someone say that we are a depressing person, for example, we may kick back, telling them that we couldn’t possibly be a depressing person, because we hate depressing people, as if that argument is a tour de force which cannot be disproven.

I can think of times that I have had some negative trait pointed out to me that I have displayed, a trait that doesn’t necessarily agree with the image I have of myself. That has lead me to reject it and tell the person that they’re wrong about me. I’ll then think about it all day, obsessively playing scenarios from throughout my life out in my head, and thinking about how it actually supports what they have said. All of a sudden, the things that I am remembering all concur with what the person said, and I’m forced to admit something that I don’t like about myself. I hope that it has had enough of an impact on me to make me change, and I’ll frequently assess the way that I behave in situations against that critique, but over time I lose focus, and perhaps don’t improve as much as I’d like to. Other times I have, though, and I’ve managed to curtail a behaviour enough that I think I manage to reform it for the better. Other times, I really don’t believe that this person is correct, and I find amusement in their suggestion.

The problem with this method of self-improvement is that memories are notoriously difficult to accurately recall. How we feel during that second that we are thinking about the memory taints it, and our interpretation of it can change from moment to moment, day to day. A memory of a time spent with a significant other can bring plenty of comfort for years. Then, the breakdown of that relationship may cause that memory to taint, and it can be difficult to remember it without feeling a lot of sadness, anger, regret. Sometimes it takes years to look back on it with any fondness at all. Sometimes we never do again, and it will forever hold a negative place in our lives. Those happy memories haunt us, becoming the opposite of what they once were to us. If this is true of the memories that we are conscious of, who knows what becomes of the memories that we’re unconscious of, but that continue to impact our every thought, reaction and motive.

What makes someone like Daniel Tammet’s memory so good, and mine so bad, though? I have an idea of what may have negatively impacted my memory… As a teenager, my modus operandi when “socialising” was to drink myself into oblivion. “Pacing yourself” was a concept that I was aware of, but only came into my life in the form of a flippant joke, as I downed another can of something and became slightly less aware of how much of an idiot I probably looked. Sure, there were a lot of fun times, but I seldom remembered them. They live on in tales told between my friendship group, and I vaguely recall tiny snippets of these memories, probably constructed more from the narrative told than the experience itself. This was my approach to drinking for the best part of 8 years. It was a hard cycle to kick. In some ways, I think I was an alcoholic, but the fact that I established a healthier relationship with alcohol perhaps suggests otherwise. I assume that a true alcoholic can never have a healthy relationship with alcohol. Perhaps it is dependent on the personality type, or the specifics of the abusive relationship with alcohol, or a combination of those factors, and more. What I do know is that my memory is terrible, and I’m willing to bet that excessive drinking played a part in that.

Yet even my memory, plagued with blank spots and steep cliffs, will trigger upon smelling a certain smell, or hearing a certain word. Sometimes I’m not even sure what the memory is, I’m just sure that whatever triggered it means something to me. It’s a strange sensation. I wish I could think of an example, but that would contradict my point. Perhaps it is a familiar smell, one that I smelt during some significant event, but it isn’t enough to trigger an actual memory, it just conjures some emotion or feeling. There are fewer things more powerful than it. It is like that scene at the end of Ratatouille, when the food critic asks the mouse to make a meal for him, and the mouse chooses to make him ratatouille, a standard dish, and one that is not necessarily impressive on its own. But, upon putting the food in his mouth, the food critic remembers being a young boy and eating his mum’s ratatouille, and it brings a tear to his eye, then he announces that this mouse does indeed belong in the kitchen, against all health regulations, because he made a damn good ratatouille. Sure, why not. The central point of the scene is poignant, though. Smells and tastes can evoke a strong feeling. So strong that fast food companies apparently create the smell of their food in a laboratory; it sounds made up, but the smell seems to travel a fair distance from the restaurants, and it does seem to have its own defining personality, one that reminds us of all the other times spent there – with family and friends, through hard times and good. I don’t fall for it, but my memory is so bad that I don’t remember any good times in McDonalds, so I don’t fall for their trickery. There are other smells which evoke powerful memories for me.

The smell of wood being cut really reminds me of my grandad. He was a carpenter and had a cellar filled with big machines and devices used to carve wood. When I was in primary school, we made a model of an aircraft carrier out of wood together. The detail in the model was impressive, with little gun barrels poking out of the sides of the ship. They probably don’t even have turrets there, but I think my grandad was letting me be the creative director on the project. He clearly did all of the hands-on work. After finishing it, we painted it all a monotone blue colour, with no other detail whatsoever, and it looked a little bit unfinished. His field was carpentry, and it held a clear boarder for him. Decorating was a different department.

The smell of incense reminds me of going clothes shopping when I was about 10 years old. At the time, I was obsessed with skateboarding. My dad used to take me and my brothers to a shop called Dazed (I think that’s how it was spelt), and the shop always smelt strongly of incense. I didn’t know what the smell was at that age, or for a long time afterwards. I’m not sure when I eventually smelt it and made the link, but it was years later. “THIS SMELLS LIKE DAZED,” I shouted out once whilst at a friend’s house, after he started burning some. They didn’t have a clue what I was talking about. The sentence came out of my mouth almost involuntarily, and I had to explain to a small crowd what I was talking about, realising as I spoke that it was far more interesting to me than it was to them, or anybody… a little bit like the topic of this post? I’ll make next week’s extra stupid, I promise. If I remember…

My sister Josie claims to remember everything. She will constantly recite back things that we did when we were younger together. I respond with a blank stare, reminding her that I don’t remember anything from 2018, never mind when I was 8 years old. I’m convinced that she just has a more creative mind than mine, and she simply believes that a lot of these things happened because she can see them in her mind, but that they didn’t actually occur in real life. Perhaps that is me being cynical as it is so hard to envision such a world where one actually remembers things, when the one I am used to couldn’t be more different. We’re from the same family, after all. Shouldn’t we have the same propensity for remembering? I guess not. I can’t even remember why I started writing about this in the first place…

On… Commuting

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Early on in my career, I realised that half of the battle in staying happy in life is learning to enjoy your commute. If you find peace during that 45 minute journey, where you’re sat in stand-still traffic or pressed up against the inside of a train door, then you can do anything else in life with vigor. It is the key to inner happiness. When we think of Monks, we assume that it is their connection to their God and their studious nature which brings them inner peace. Although this is a nice theory, I believe it may be wrong. Monks spend their lives in monasteries, where commuting is a dystopian concept. It isn’t a coincidence. They’re probably unaware of the entire concept of ‘dystopian’ with all that peace and tranquility. To some of us, a monastery seems like a concept reserved for dystopia, but I’m sure everyone agrees that the lack of commuting is anything but. Perhaps I should become a Monk, come to think of it. Na. I like buying things too much.

‘Commuting’ is an elastic word. Although it is commonly used to refer to the regular act of leaving one’s home to get to one’s place of work, it could, in theory, refer to any journey that is made regularly. If I had regular piano lessons, and I travelled there every Saturday at 08:00 to arrive at 09:00, could I refer to this as my ‘commute’ to my piano lesson? I might. It might even be acceptable to describe it as such. It is certainly acceptable according to the Wikipedia page for commuting, where the following is stated:

Commuting is periodically recurring travel between one’s place of residence and place of work or study, where the traveler, referred to as a commuter, leaves the boundary of their home community. By extension, it can sometimes be any regular or often repeated travel between locations, even when not work-related.

Notice the use of the word ‘even’ in that paragraph? “…EVEN when not work related.” What exciting lives we lead in the modern world. It makes me think of the interview with then british Prime Minister Theresa May, where a reporter asked her what the naughtiest thing she had ever done was, with the slightest hint of sarcasm in her tone, but still said very professionally. Theresa May responded in a babbling fashion, trying to buy herself time to think of a realistic yet relatable answer – “Oh goodness me…. Erm, well I supposed the… Gosh… I’m not sure… No one’s ever perfect are they… Well, I have to confess, when me and my friends would, sort of, run through the fields of wheat…well, the farmers weren’t too pleased about that.” You can’t watch it without covering your eyes and cringing. I think Theresa May might have written the Wikipedia page on commuting, based on her response that day. I’m surprised it didn’t come up after that question was put to her.

Reporter: “So, Theresa, what is the naughtiest thing you have ever done?”

Theresa May: “Well, erm, I guess I’ve, erm, been a little aloof with my siblings in the past. I EVEN described my journey to my brother’s house for Sunday dinner as a ‘commute’ because I was doing it every week. He didn’t appreciate that.”

After she said it, you could sense the world collectively groan back at through their TV screens, before immediately changing the channel. It would have actually gone down better than what she said – at least it would have hinted at the fact that she had a sense of humour.

But I am not talking about the type of commute where you frequently make some nondescript journey. I’m talking about that forced journey that you make at the worst time of the day, during rush hour. When everyone in the world looks miserable because they got out of bed earlier than they wanted to, to go to a place where they’re constantly scrutinised on their ‘performance’, whilst making someone else a lot of money, which they only receive a small percentage of in return. That morning slog to your place of work.

If you’re driving a car and you’re unfortunate enough to meet another person’s glance as you’re sitting in traffic, you see the same misery that is painted over your face in theirs. You both quietly acknowledge it, before quickly looking away and pretending that you aren’t still wondering if they’re looking at you. What else are you going to do? Think about work? Gaup at another car? There’s nothing better to do. Just stare forward and try to think of nothing.

In London, on the underground, making eye contact with someone is considered assault during rush hour, and it is to be avoided at all costs. There are reports of people actually turning to stone upon making eye contact with each other on the tube in rush hour. I haven’t seen it happen myself, but I’m not willing to find out if the stories are true or not. Here is a little run down of my daily commute on the tube…

As soon as I enter the train carriage in the morning, I run for the only seat that is still available and throw myself on it. Then, I take out my book from my bag, ensuring that the only place I look is down, before opening it up at any page at all (I don’t care where, so long as I am too busy to engage with anyone around me), and that is where my gaze stays until it is my stop. Then, I put the book in my bag, immediately produce my phone from my pocket, check my emails quickly as the train pulls into the station and, when it stops, I finally look up, stand up, and leave the train. A sigh of relief involuntarily leaves my mouth, and I start to shake the hands of every person around me whilst staring them straight in the eye, like a politician, congratulating them for successfully making it through another commute. Then I realise that I have a 20 minute walk to my office from the station, which means that my commute is technically not over yet. Horrified at this realisation, I repent to the commuting Gods and ask that they forgive me for my transgressions, for daring to look another commuter in the eye. Then I nervously run to my office, purposefully barging into people in the street to make sure that they know that I am a commuter and I will damn well act like one, with my eyes fixed on the pavement in front of me and a total disregard for anyone or any thing that isn’t me. Later, when I get a notification from my bank telling me that London Underground have charged me for the journey, I am reminded that I actually pay to do all of this, and the indignation weighs heavy on me for a while. Then I get the tube home and forget about the whole thing. Same again tomorrow, I guess.

Commuting seems to drive people clinically insane. When I used to get the tube from London Bridge, in central London, to Canary Wharf, I would always take the Jubilee line. If it is running to schedule, there is a train every 2 or 3 minutes. It is quite impressive. Despite this, sometimes I would be walking towards the platform, where a train would be sitting with people alighting from it, and I’d accept in my head that I’ll just get the next one, as there are too many people around to allow me to sprint at it, and there will be another train in 2 minutes anyway, so why would I? Next thing I know, Tom in the Blue Suit is bursting past me from behind, as if this train was the last train to heaven and if he didn’t catch it, he would immediately be damned to the train to hell and nowhere else. I’m sure in his head he has a scene from an action film playing, and as he dives towards the train doors, the bell ringing out to signify that the train is going to leave and doors are closing, he thinks he has made a fantastic decision. Then, as he dives through the closing gap, the entire world probably goes into slow-motion a la Matrix style, as he narrowly slips through the gap, the door closing on the heel of his back foot. “Please do not obstruct the doors,” says the train driver through the tannoy, in a frustrated tone. Tom pulls his shoe from the gap with great effort as the doors angrily clap together behind him. He then smiles to the hordes of people crammed into the train, some of which he has just shoulder barged on his way in, then continues to look down and assume his position as unassuming commuter #235987245897349683045892034729845938460395863. Well done, Tom, you saved yourself 2 minutes. Enjoy getting to work earlier you absolute moron.

Of course, the recent wave of Working from Home has seen a decline in commuting. Whether working from home (stylised as ‘WfH’ or ‘WFH’) is a positive thing or not seems to split opinion. I feel like most people that I know are in favour of working from home, but I know a few people who are ardently against it too. In my experience, the answer seems to be in balance. Covid-19 presented us with a rare opportunity where we were forced to stay in our homes, and work from them all of the time. We had to do everything from them. I even had to do my family Christmas from my own home, via Skype, because Boris Johnson announced another lockdown about 2 minutes before I was leaving to get the train home for the holiday. Bah humbug.

Commuting became an ideal of the past, a distant memory of a world not plagued by… plague. One where it was common to see groups of young professionals outside the pub at 18:00 on a Wednesday, armed in suits and drinking beers, and where it was a given that we’d all be travelling into work the next morning, assuming it was a week day, but we all thought nothing of it. We all had more stamina then, and going out for mid-week drinks was part of the job. How life has changed.

Working from home was a benefit that I had experienced at my old job, but it was something that you had to beg for, and have a ruddy good reason for asking. Then, the pandemic happened, and all of a sudden the world required everyone to WfH all of the time, or risk death. We all started judging each other on how willingly we wore masks in supermarkets. I remember someone pointing out that all of the youths that used to love wearing masks in public were now refusing to wear them in an act of defiance, an apt observation which I thought of every time I saw a group of bustling teenagers in a shop, not wearing masks and staring you out for daring look in their direction.

I now go into the office twice a week and I have to say, it is quite enjoyable! It is nice getting out of the house, putting on some nice-ish clothes, and seeing people face to face. The whole thing feels quite novel. Yet, now there is more of an expectation on us to do so, the office is the worst thing ever again. There are no winners. Humans are destined to be unhappy – that is my takeaway from it all. If there is something to be dissatisfied with, we’ll find it and we’ll milk it dry. When we were working from home, we wanted more money to cover the extra heating bills, but now we’re back in the office, we begrudge having to pay the money to commute.

But I have lots of positive things to say about the pandemic AND about post-pandemic life. The pandemic actually presented me with a few rare opportunities, of which I will forever be grateful. I was living in central London when it hit. During my long runs on a Saturday, I’d run along the Thames path right next to the river, through central London and around Southbank. There was a time that I was running over the Millenium Bridge, the bridge which crosses the river next to The Globe theatre and leads you straight to St Paul’s Cathedral, and I couldn’t see a single person anywhere. It felt like I was in a zombie film. No tourists, no commuters, no street performers. Just me, the Thames, and an eerie sense that the world was ending. The world wasn’t ending. In fact, there were images of fish in the canals in Venice, and wild animals venturing into the towns in Wales… the world was actually doing better and we were the problem all along – who knew? But it was a peaceful time, and I’ve never experienced a London like it in all my time of living here.

So, I’ve tried to make something of my commute, as it is the only thing standing in my way of enjoying my 2 days in the office… I try and use it to do something useful. I’ve been reading through all of Patrick Radden Keefe’s books, an investigative journalist who writes incredible non-fiction, but has such a smooth writing style and finds such interesting topics to talk about, that makes you wish that the commute would never end. I’ve started writing on my commute on my phone too, or I’ll respond to a bunch of texts that I’ve been sitting on (apparently, a side effect of having had cancer is that you get really bad at doing life admin). I feel like it is reforming my opinion of commuting. It does help that where I live now is a little quieter on the commute, and I usually get a seat… I wouldn’t be spinning a positive ending on this if I still lived in London Bridge, that’s for sure. And I stand by what I said at the start of this – if you can find a way to enjoy your commute, you will probably be a much happier person overall. I feel like I’m moving past a notional concept of enjoying my commute, though, which is what I used to have, and am actually starting to enjoy it for real. If I see Tom in the Blue Suit, though, I’m going to trip him up and laugh to high heaven as his train departs the station without him!

On… Ennui

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There is a popular saying which states that ‘only boring people get bored’. I’m assuming it is popular. If it wasn’t, I doubt I’d have heard of it, but I can’t seem to attribute it to anyone in particular. Boring people presumably do get bored, but I think other people might get bored sometimes too. I’ve felt bored loads of times. Am I a boring person? Maybe.

When I’m bored, I like to find an over complicated word to describe something commonly referred to by another name, then drop it into conversation with someone, and act stupendously shocked when the unsuspecting party does not know what it means.

“What does ennui mean? Why it means ‘bored’, of course! You should read more; you’re falling behind my level of repartee [banter]!” There’s nothing like talking down to a close friend or family member for your own amusement, and the experience will pay dividends in keeping you anti-bored. You can think about it for days, weeks, months, even years. You’ll laugh to yourself, thinking, “Oh I got them so good that day. I wonder what they’re up to now? They don’t really speak to me anymore. Come to think of it, no one does.”

Boredom is the modern day plague, being passed from indifferent subject to indifferent subject. Our toxic boredom leaves us believing that there’s nothing left on Netflix that is worth watching, that our phone’s limitless capability is incapable of keeping us entertained, and allowing quick-fire apps like TikTok to flourish, because it removes the inconvenience of ‘thinking’ and ‘focusing on a single thing for more than 30 seconds’. We can’t even be bothered to have a favourite news outlet anymore, so we let social media tell us what news articles to read. Gone are the days of ‘journalistic integrity’, whatever that means. It’s all about clicks, clicks, clicks. Loyalty is just an archaic word now. We just open whatever is thrown onto our newsfeeds, moving seamlessly from one to the next, allowing the algorithm to dictate what we do next. One minute you’re reading about the Kardashians and how they wore clothes to something, the next you’re in the bowels of an extremist apologist page, finding yourself agreeing with the discourse, yet not realising that you’ve slowly been inveigled [persuaded].

We trust the algorithm of social media websites so sincerely that it is a shame it is a faceless, lifeless entity. We’d probably rather be friends with that than most of our real life friends; definitely our family – we don’t even get to choose them, so we’re bound to not like them. Besides, the algorithm takes time to learn what we like. Damn, it even tells us what we like. Over time it actually decides what we like, and it is far more adroit [skilful] at figuring it out than we could ever be.

But we like that, don’t we? I don’t have enough time to decide what I actually like in life anyway, so I’d rather let AI do it for me. That way I can dedicate more of my time to having nothing to do. I can maximise my boredom even more efficiently if I start to ask Chat GPT to write my blog posts for me, then get it to answer the comments from the community too, then hopefully, in time, it will attend my family Christmas meals for me, and make friends with my colleagues, and even do my work. In the future, it might even be a good husband to my wife for me, freeing up even more time for me to do absolutely nothing. I’ll have so much time to be bored – it’s going to be terrible. I can’t wait!

Boredom is promoted in our society, as the antidote to boredom is buying more things, going on more holidays and disliking others more for being less bored than you. That creates an environment where evil can flourish, the type of evil that is above boredom, and is ready to pounce on those negative feelings. Sure, we can eat grapes all year round thanks to globalisation, but that isn’t enough to feel happy, is it? No – we’re bored of all of that. Yet, while we sit bored, Putin is invading Ukraine, Amazon is the only company left in the world and James Corden still has a career, despite being a despicable human being who would pander to an autocratic psychopath if it would advance his career in any way possible. Avarice [greed] is held in high-esteem, whilst being satisfied is looked down upon, as if one is never supposed to feel content with what they have.

Yet even I, with my erudite [learned] understanding of ennui [boredom], occasionally fall into the trap. I’ll be sitting at home, too tired to read and the evening still too young for me to go to sleep, and I’ll think to myself – “isn’t life boring?” I wait for a response from the universe… nothing. Knew it; that would be too interesting. The mind can enter a free-fall mode when it is in this sort of defeatist mood. Everything reinforces that negative feeling; you message a friend to see what they’re doing and they don’t text you back for 30 minutes… well they obviously despise you and think you’re boring and don’t like you and are probably sat talking to someone about how annoying you are right that very second. You get off the sofa and try to cook something, but you’re out of that one spice that you need… so you plan on going to the shop, but the shop closes in 20 minutes. Besides, they never have that ingredient anyway – they’re always sold out of it. You’re always walking up to the shelf just as the last one is snatched up by someone better looking than you, right in front of your very eyes. Then you hate them for taking it, and for being better looking than you. They probably never get bored.

But there are people in the world who have a curiosity which pays dividends. Simple things can deliver a world of intrigue and pleasure, if allowed. For me, I like to find interesting words and write them down in the Notes application of my phone. I’ve got a long list of interesting words, with a short definition next to each, so I can trawl back through them when I’m sat around drinking my coffee in the morning, and recite the ones that I particularly like back to myself. Sometimes the sound of a word is pleasing, such as the word ‘vexatious’, which is defined as ‘causing or tending to cause annoyance, frustration, or worry’. Other words have a pleasing definition, such as the word ‘syllogism’, which is defined as ‘an instance of a form of reasoning in which a conclusion is drawn from two given or assumed propositions’.

(Vexatious actually sounds cool to say AND has a pleasing definition, but I couldn’t squander an opportunity to use ANOTHER word as an example).

Well, I am declaring war on being bored. My promise to myself is to never be bored again. Not by burying myself in social plans and never being alone; no. I’m going to become a master of being alone. I am going to abandon my loquacious [talkative] nature, which demands that I seek out large groups of friends and make them laugh until their jaws hurt (which I am an expert at on my good days, honestly). I’m going to watch paint dry for so long that I am engaged in it’s story, like watching Breaking Bad, or the first 5 seasons of Dexter (and strictly no further). I’m going to read the dictionary for fun – riding the pages like a rollercoaster, until I slam the back page closed and wonder where the time went. I’ll read the dictionary with such enthusiasm that my sobriquet [nickname] will be ‘Dictionary Dan’! My dictionary will be my closest confidant, never to be read sub rosa [in private].

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’.

Waitin’ Round to Die; Anticipating More Scan Results

godley93, , , , , , , , , 13 Comments

The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?