January Scan-uary

29th January 2024 godley93Blog, Cancer, Health, Hospital, Life, Lifestyle, mri, Pancreatic Cancer, Patient, Recovery, Scan, Scanxiety, Stage 3, Tumour8 Comments

In solidarity with my body, I signed up at my local dentist’s practice and got my teeth checked out for the first time in a year and a half. I was inspired by my wife, Anna, and our flatmate, Matt, who both took similar action, signing up for a dentist and attending appointments within a week of each other. I started to feel left out and self-conscious of my teeth. My sense of FOMO outgrew my urge to continue my dental lethargy, and I found myself sitting in the dental office on a Monday morning. The whole process was quick, I have to say. I called on Saturday and was there two days later. Not bad.

“How’s your general health, Daniel? All good?” The dentist didn’t realise what she was sleepwalking into with questions like this. Neither did I, for a second.

“Yeah, not bad, thanks,” I responded before realising that the question wasn’t just a formality and was actually part of the induction. I quickly backtracked. “Sorry, no. My health is ok now, but I had stage 3 pancreatic cancer in 2021. I’ve been clear for over a year, but I didn’t have any checkups at the time as I was advised against it whilst on chemotherapy.” I had my excuses armed and ready to go. Cancer is difficult to shoot down, so I felt safe.

The dentist looked a little dumbfounded for a second, but we pressed on. I explained about the chemotherapy, the operation, the diabetes, blah blah blah. I’m bored of writing it all out, so I’m sure you’re getting bored of reading it.

The dentist and I established some common ground along the following margins – Kings College London is an amazing hospital, modern medical technology is wonderful, how me being alive is proof that there’s a God (this was her take, but I placidly agreed with the sentiment) – before cracking on with the examination. My teeth are apparently in good condition. No fillings are required or anything. She did ask me if I drink a lot of coffee, which made me feel a little paranoid that it was this obvious just from looking at my teeth for a minute. The staining gave me away, but she said that the hygienist would be able to sort that out. I assumed this meant that my hygenist appointment would be with someone else. Lo and behold, my hygenist appointment was with her, too. Quite the trick to play on me, telling me that the hygenist would sort it out, only to reveal at my next appointment a week later that she is the judge, jury and executioner at this dental practice. Touche.

My cancer story has become my rabbit out-of-the-hat trick. It’s my only rabbit-out-of-the-hat trick, really. I’m a one-trick pony in that regard. But every dog has its day, and my day seems to be lasting a while. Thursday, January 25th, was my next opportunity to put this theory to the test. Another January scan-uary. Getting scanny in Janny. Well, here we go.

The Scan of Dan

A cruel part of being diabetic and needing regular CT scans is having to wear a Continuous Glucose Monitor (CGM) on your body. The device is a small plastic circle with a needle inside, which snaps in place via a plastic applicator. My device is made by a company called Dexcom.

Dexcom likes to remind you that the devices aren’t compatible with CT scans, so you should take them out before having any such scan of your body. I usually avoid this problem by wearing it on the back of my upper arm, so the device doesn’t enter the CT scanner (I have to put my arms above my head during the scans, so the X-rays can really hit that abdomen area in search of any pesky tumours). This stops it coming into contact with the scan and means I don’t have to take one of the devices out every time I have an appointment. It costs me £170 a month for the privilege of having these devices. They’re expensive business.

In a moment of madness before my last scan, I decided to try applying the device to my stomach fat to see if the readings were any more accurate. I’d gone through a period of having a lot of problems with the device when inserted in my arm – the connection was cutting out a lot, and my readings would frequently not line up with readings I’d take using the old-school finger prick method. I hoped that something about my arm fat was defunct and that I could solve the issue by applying the device to my stomach fat. This lapse in judgment only revealed itself to me the following day as I made my way to the hospital for the scan and remembered that the previous day, I had decided to install the device in the worst possible place for a CT scan of the abdomen.

I had waited until I was in the imaging department changing room to do anything about this realisation. Sitting on the wooden bench, I wondered whether I could get away with leaving it in. I read an article years prior to this about a woman who had a metal plate in her shoulder but did not warn the medical team when having a scan, and the magnets inside of the scanner ripped the metal plate straight out of her body. At that moment, this story was vivid in my mind. Risking leaving the Dexcom device inserted seemed illogical. This train of thought made me wonder why I was even considering leaving it in. What a stupid idea.

As I tore it out that day, depriving myself of those regular meter readings that provide me with so much confidence in my day-to-day life, I felt dumb. Really, really dumb. Why hadn’t it occurred to me that inserting it into my stomach on scan week was a stupid idea? Because I am dumb. That’s why. At least I’ve learnt that about myself. I do seem to learn from my mistakes, though, as I had inserted the device into my arm this time. Well done, Dan. I had managed to do the absolute minimum preparation I should expect of myself before a scan.

Yet, despite managing to prepare by not inserting my glucose monitor into my stomach, I did not manage to locate the pre-scan questionnaire sent alongside the letter notifying me of the scan date. This was pretty damn dumb. Considering I have had north of 8 scans at The Christie at this point, it should be pretty easy to remember this form. Well, if this is what you’re thinking, I’m about to make you look silly. I actually DID remember that I needed to fill in the form; I just had no idea where I put the form upon receiving the appointment letter, so I never had any chance of filling it in.

Anna, my mum, and I had planned to get to the hospital early to give me time to ask for another questionnaire. After a long lunch and a lengthy spell of sitting in various traffic jams due to us making our way to the hospital at the exact time everyone picks up their kids from school, we pulled up outside of the hospital at 16:00 on the dot. My appointment time happened to also be 16:00. That plan of being early tripped on the first hurdle, I guess… I got to the sign in desk a couple of minutes late, but nothing too bad.

Still, NHS appointments know a thing or two about being late, and this one was no different. It was 17:40 before I was actually in the room with the huge CT scanner. To be fair, it always takes at least 50 minutes from the appointment start time, as it takes this long to drink the dye required to do a contrast scan. The nurses give you a large bottle of liquid and a plastic cup once you have gone through the questions in the questionnaire. They tell you to drink two cups straight away, then another cup every 15 minutes until all of the liquid is gone. After about 45 minutes, most of the drink has gone, and they call you into the next area to have a cannula put in your arm before inviting you into the scanning area. This time, I had finished all of the liquid so long before being called into the next area that I started wondering whether it was OK for me to drink some water, as I was feeling thirsty.

The scan was nothing extraordinary. I don’t know when I’ll get the results as I haven’t received a note of my follow-up appointment. When I was still in the midst of fighting the cancer, the appointment was always within a week of the scan. Nowadays, I’m more on the periphery of cancer, so the turnaround times on the results have also gotten more lax. I’d rather my result appointment continue to be far away from my scan date if that is what happens to people who don’t have reoccurrences. It seems like a small price to pay. But it means that I generally unwind from the scan a little easier, as I know there is no immediate meeting to be stressed about. As soon as I know that date, however, that will drastically change. Waiting a couple of weeks for an appointment where you may be told there is another army of tumours waging war inside you is a little stressful, to say the least.

The Tuesday before my appointment, I had been travelling home from work on the underground. There were people packed into the carriage like sardines, so much so that if you were sitting down, you couldn’t see beyond the standing torsos in front of you. Somewhere in the carriage was a man whistling with a distinct vibrato. It was silent other than the whistling and the occasional cough. I was trying to read at the time but couldn’t stop myself from focusing on the whistle. I tried to look around me to see who was producing the noise, but it was impossible with how busy the train was. It sounded like the kind of thing that would be in a war film, with the soldiers waiting to be sent to the frontline. I wondered how he knew about my upcoming scan and why he felt it was appropriate to mock me like this. Perhaps he was mocking all of us who were returning home from our cushy city jobs, where we aren’t even exposed to the cold, never mind to the bullets and the death. Maybe he was just whistling a song he likes. Who knows.

As we drove away from the hospital, I thought about that whistling. I couldn’t remember the tune or anything, but I remembered how I had felt listening to it. It was soothing yet strange. There wasn’t any place for it in that train carriage, but I felt that there was a place for it in the car. These things just aren’t there when you need them most. I relied on my memory to fill in the notes of the tune and wondered whether the whole experience signalled my imminent call back to the battlefield. Probably not – the appointment won’t be for weeks anyway, and I won’t even remember that the whistling happened by then. People have told me that my whistle has a nice vibrato, and I remember my grandad had an amazing vibrato in his whistle. Perhaps I just like whistling, and I derive a lot of meaning from it because of my memories with my grandad. Maybe that is all there is to it.

It’ll be fine. It has to be fine…

Scan Results & The Death of Summer

24th September 20233rd March 2024 godley93Baking, Blog, Cancer, Chemotherapy, Croissant, Dog, Health, Hospital, Lifestyle, Pancreatic Cancer, Philosophy, Positivity, Recovery, Scanxiety, Stage 3, Stage3, Surgery, Treatment14 Comments

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.

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

30th July 202330th July 2023 godley93Blog, Cancer, CGM, Dexcom, Diabetes, Health, Hospital, Injecting, Insulin, Lifestyle, Pancreatic Cancer, Positivity, Treatment, Type 1, Type 3C1 Comment

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…

Another Scan (L’appel du Vide)

23rd July 202324th July 2023 godley93Anxiety, Cancer, Depression, Diabetes, Hospital, Mental Health, Operation, Pancreatic Cancer, Recovery, Scanxiety, Stage 3, Surgery, Treatment, Tumour5 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Total Pancreatectomy: 1 Year On

16th July 202317th July 2023 godley93Blog, Cancer, Delirium, Diabetes, Diabetic, Health, Hospital, Lifestyle, Major Surgery, Mental Health, Operation, Pancreas, Pancreatic Cancer, Stage 3, Total Pancreatectomy, Type 13 Comments

The Road to Recovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Goodbye, Portner in Crime

22nd May 2023 godley93Blog, Cancer, Cancer Care, Chemotherapy, Health, Hospital, Lifestyle, Operation, Pancreatic Cancer, Port, Portacath, Procedure, Stage 3, Treatment2 Comments

The Port, Taken Shortly After It Was Put In – November 2021

You ever wonder how deep you could sink into nothing at all?

There are always multiple ways to frame situations in life. When the oncologists told me straight after my first ‘all clear’ scan that I needed to have my chemotherapy port removed from my chest, I could have chosen to take this as a positive. Surely they wouldn’t be requesting it to be taken out if they had any major concerns about my health. A few people I know have responded with this logic upon learning that the oncology staff want to schedule taking the port out, and I’m happy for them. I, however, am not one of them. To me, them telling me that my port can be taken out is them alluding to the fact that if the cancer comes back, I’m totally fucked and the port won’t make any difference whatsoever.

Having a port in your chest also comes with some increased health risks, so I think the actual reason they take it out is far simpler and more straightforward – it is just the process. If you aren’t on active chemotherapy, and the port is not being frequently ‘accessed’ (that is medicalese for a needle being plunged into the port in your chest, before pumping things into it; they aren’t small needles either), then dry blood can cause issues with it, causing the line to become useless. The device also increases the chance of a blood clot occurring, but only by a very small percentage. When I got it put in, the nurse putting it in told me that in other countries they don’t have a policy stating that they need to come out again once inserted and that they tend to leave them in for the rest of that person’s natural life. That sounds lovely. I bet those countries have more sun than we do in England, too.

To give some context, in case anyone reading this feels like they didn’t get the memo on what these ‘ports’ things are… A ‘port’ is a Portacath. It is a small silicone device that is inserted under the skin in the chest, that is connected to a line. When they put it in, they insert the line into a major vein in the neck, running it under the skin from where the silicone device is, north of your chest and into the vein. You can actually see it through the skin.

They are put in with local anaesthetic administered to the neck and chest area and I can confirm, it is pretty uncomfortable. Nowhere near as uncomfortable as having an endoscopy, but this isn’t Medical Procedure Top Trumps. They’re all terrible in different ways. I wrote an account of the procedure in an old post, actually, so my more dedicated and long-standing readers may already be aware of that, but it was ages ago. I’ve also written about my experience of having an endoscopy too, but that is a memory that is deeply entrenched in a dark corner of my psyche, and only comes out to play when my mind feels like re-traumatising me in the form of a bad dream or a rough mental patch. I have spoken to the odd person about their endoscopy and they’ve told me that they didn’t find it too bad… Although I respect these people tremendously, they really do need to have a mental evaluation to make sure that they are Ok. Despite an endoscopy being required to diagnose me, which makes me enormously grateful for its existence, it is, essentially, a torture method. I don’t fully remember the whole thing due to the sedative they administered to me before starting, but I remember black bile leaking out of my mouth, and the sensation of choking on my own sick whilst I struggled to breathe. Where else would you hear those kinds of things? Correct – a prisoner’s account of being tortured!

I was supposed to have the port taken out straight away once I was told that there were no signs of cancer anymore, back in February, but I asked if they could wait until after the next scan. It felt like tempting fate to take it straight out, and I was suspicious that the staff knew something that I didn’t. Why were they so sure I wouldn’t need it again? Am I actually fine now? No one will tell me I’m fine – I keep being told that I have to “live with cancer” for the next 5 years. Turns out, oncologists just really hate telling people with pancreatic cancer that they might survive, and like to adopt phrases such as “it’s a really difficult cancer.” I know that it’s a difficult cancer – I had it / have it / am living with it / am sick of thinking about it – I’ve seen plenty of things alluding to the difficulty of this cancer. I don’t actually know where I’m at with it. But I’m definitely living with it in some way – it won’t leave me alone.

Well, today was the fateful day. The port was coming out. I had already rearranged the appointment once, as I received the call about scheduling it approximately 10 seconds after leaving the oncologist’s office after being given my scan results. It was in that very meeting that I had reminded the oncologist that it needed to be taken out, so either the schedulers are mediums or the oncologist pressed his panic button under the desk, which must flash an emergency light in the scheduler office, allowing him to bash out my name in morse code for her to then find me on the system and call me to make the appointment. They also might just have had a working phone system, and the oncologist called them straight away, to ensure that it was scheduled before anyone forgot. It was probably the Morse code theory.

I chaotically said yes to whatever words came out of the scheduler’s mouth. Then, upon hanging up, realised that the time I had scheduled did not agree with my work calendar whatsoever, and that I’d need to reschedule. The problem was, this was Thursday and I was off work on Friday, and I’d just received some positive scan results. So I did what any respectable person would and waited until Monday to do anything about it, just over 24 hours before my appointment time. They were very accommodating, luckily. They had every reason not to be.

I’ve learnt to be a certain way before these types of events. It’s somewhere between tentative and apathetic. The resulting state is one where I waltz through the day or two before the procedure, never fully thinking or worrying about it, but never not thinking or worrying about it too. It is an ever-present threat which lodges itself in the brain. I know it won’t hurt, but it isn’t that which causes me to linger on it so much. Who wants to have their chest cut open and a device, which is connected to a major vein, yanked out? The same group of people who think endoscopies are bearable – of course. The whole thing just gives me the ick.

Getting it out is a different affair to having it put in. When it was put in, a plastic piece of material was used to stick the side of my head to the table facing the opposite way from the procedure. This time, a plastic pad was stuck to my chest, allowing the nurse to operate whilst keeping it as hygienic and mess-free as possible, but I could have, if I wanted to, picked my head up off the table and looked straight at what was happening just 10cm from my head. Of course, I didn’t, as that would have been an instant pass-out for a weakling like me. But I could have, and that felt empowering, when I eventually thought about the fact that I could have done that, half an hour after the procedure had finished. I didn’t have the guts to think about it during the procedure – I was bracing for dear life.

Last time, when it was inserted, I had to have a series of injections that were really painful to kill off the feeling in the area, but this time it was sprayed with something. Initially, it gave a cool sort of sensation, which then advanced to a sting, then, nothing. Perhaps the nurse injected something afterwards, but I didn’t feel it if she did. What I did feel was a couple of sharp twinges early on deep in my chest, shoulder and arm. I couldn’t tell what she was doing, but at one point, one of them made the right side of my body flinch involuntarily, and I started to profusely sweat. I let out an awkward sound, and she confirmed that I couldn’t feel any pain, only some “disconcerting poking”… It didn’t make me feel better. She was doing her best to keep talking to me, and I was impressed with her commitment to trying to distract me, but I was laying back with my eyes closed at this point, and wasn’t really responding.

After 5 minutes or so, most of the uncomfortable feelings had gone. I assume that she had done the gross part at this point, and was just doing the admin work – the stitching of the wound and whatever other things she fancied doing whilst in there. Taking a look at my tattoos from the underside of my skin, dropping a little M&M in there maybe – disinfected, of course. The whole thing probably took 20 minutes max. I sweat so much that I felt concerned about it. Should I be embarrassed? I made some awkward remark about it. “I sweat more during that than I have for the rest of the year so far,” I mocked, trying to address the elephant in the room, and she peeled off the material that was sprawled over the bed. During the mop-up chemotherapy, I was sweating so much that I started wondering whether its purpose was to try and sweat the cancer out rather than kill the cells themselves. It is still a running theory of mine.

Now, as I sit on the train back to London writing this, the area does feel quite sensitive when I move it. I’ve taken paracetamol, which I’m convinced doesn’t do anything, despite having experienced what the liquid form of it does when administered directly into the bloodstream – it’s a totally different drug when it is administered like that. The tablets don’t seem to do anything. I’ve got a bandage on it which has to stay there for a week; once that is over, I get to take it off and pull off the paper stitches – fun! Something to look forward to, I guess.

I had a bit of a strange weekend mentally. Friday night I had a minor panic attack in bed, and tried to wake my wife up, but she was too asleep to care. Totally fair enough, it was 01:00 in the morning. I managed to navigate it, but it was a little weird. All of a sudden, as I lay there trying to fall asleep, I started having some really dark thoughts. It genuinely felt inescapable and for a second, I had no idea what to do to make it better. I grabbed my dog, Lucy, and held her in my arms whilst she absently groaned at me. She nuzzled her head into my armpit as I lay on my back. It made me feel a little better, and I reminded myself that I’ve been through a lot worse over this past year. I’m actually cancer-free right now – which is an amazing place to be. It is a place that I never thought I’d get to this time last year when I was receiving my end-of-chemotherapy scan results, and the surgeon was telling me that he didn’t think he would be able to get rid of the tumour.

Holding Lucy did help eventually, and I fell asleep. That temporal period of panic has stuck with me, though. It frustrates me that I have more episodes like this now I have some semblance of hope, as opposed to when I was in the middle of treatment and felt utterly hopeless. Trying to move into the rhythm of having a normal life is just difficult; I don’t know why, but it just is. I still don’t truly believe I’ll actually survive. I’m sure it’s to do with that. I have to force myself to acknowledge that it is a possibility now, even if it is still an uphill battle. How long can I spend worrying about something that hasn’t even happened? I find myself diagnosing myself with a reoccurrence only a few weeks after a clear scan, whenever I feel any symptom whatsoever. I’ve been moved onto 6-month scans. Surely that’s a good thing, even if the oncologists don’t specifically say so?

The weather is getting better and I have a busy few weeks ahead, so there is plenty coming up that will help to distract me, it’s just about maintaining the energy levels to enjoy it all and not totally crash. Now I’m portless as well as cancerless, maybe I’ll start to accept the distance that is forming between me and my diagnosis, rather than longing after it in some weird, backward way, where I feel more vulnerable with the more that time passes. The surgeon’s voice keeps ringing in my head loud and clear – “Not many people beat stage 3 pancreatic cancer,” I remember him saying. I too easily forget the other thing he said to me – “you have gotten this far against the odds. There’s no reason to believe that you won’t continue to beat them.”

Diabetes for Dummies

1st May 20231st May 2023 godley93Blog, Diabetes, Diet, Happiness, Health, Hospital, Lifestyle, Positivity, Recovery, Support, Values8 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.

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’.

Life After Cancer

19th April 202320th April 2023 godley93Cancer, Health, Hospital, Lifestyle, Pancreatic Cancer, Surgery, Treatment12 Comments

It’s been a minute…

The monthly subscription fee for WordPress has been coming out of my account every month. I usually open the notification from my bank when it appears on the home screen of my phone, and greet it with disdain as it torments me – a subtle reminder of how little I’ve been writing; I haven’t written for the blog at all. At least I am paying WordPress for the privledge.

My original excuse to myself was that I needed some space from it all. When you’re embroiled in a struggle against cancer, chemotherapy, recovery from surgery, you don’t find a lot of room for anything else. Similar to when you go and see a film in the cinema and you get lost in that dark room; when you leave, you almost feel shocked that people are walking the streets and driving their cars, going about their normal lives. Was I the only person locked away in that dark room? Did the world not suspend itself until I re-emerged 3 hours later? It should have. Nothing means anything if someone is not there to perceive it, and I, as the protagonist in this world, am the only thing that matters – right? Wrong.

I’ve spent a few months getting back into the swing of having a normal life. I say normal, I’ve still found myself rushing to A&E in an Uber, then painting the pavement outside of the hospital with my own vomit approximately 0.1 seconds after closing its door. Not necessarily normal, but that is my new normal. Since my operation, I’ve learnt that I have a large buildup of scar tissue in my bowel which occasionally causes the bowel to get blocked, or twisted during the process of digestion. It has led to me being admitted to the hospital about 3 times since my operation. One of these times I have already written about on this blog. The most recent one was the worst experience of them all. I was walking my dog in the park after going to the gym that morning when I started getting a stabbing pain in my groin. After cutting the walk short and returning to my flat, I spent about an hour moving between positions on the sofa, trying to find one that helped subside the pain. Nothing did.

Anna and I turned the flat over trying to find the liquid morphine that I was prescribed a couple of months ago to help with the more intense bouts of pain. We couldn’t find it; we still haven’t. Instead, I found some opioid tablets in my vast chest of medication (it is actually a hamper box that we received last Christmas, but ‘chest’ is a more satisfying description). I threw them back. They kicked my brain off kilter just enough to allow me to drift into a sleep for 45 minutes. When I woke up, the pain was angry. It had gained traction since I slipped off to sleep, and now the stab had graduated into a deep twisting pain throughout the left side of my groin. I pushed my fingers into the spot, trying to relieve it any way I could, but it didn’t do anything. Crying out in pain and struggling to breathe, we decided that we needed to go to hospital. I threw up, then the Uber arrived. 15 minutes later, I was throwing up outside the hospital, before being ferried in on a wheelchair. I must have thrown up another 6 times over the course of the next hour.

I spent 2 days in hospital and was barely conscious of any of it; morphine is a wicked mistress, but damn does it do a good job under such circumstances. I had a tube shoved up my nose and into my stomach, which kept me company for 30 hours. They kept mentioning the possibility of emergency surgery, depending on whether the issue started to subside on it’s own or not. No food. No water. No resolution. They let me go and said it might happen every few months; apparently, more surgery can just result in more scar tissue forming, so they only do it when the patient’s life is in serious threat. I think death would have been easier; the whole thing was terrible.

There’s a strange dichotomy in life after cancer. Reflecting on the months of chemotherapy, when I wasn’t sure if it would do enough to save my life, I actually think I was really happy. The diagnosis had given me so much perspective on what was amazing in my life. Every moment was beautiful in one way or another. Now, it feels like I am battling a veneer that sits between myself and my ability to be happy at all.

I’ve been reading Rob Delaney’s book A Heart That Works. It is about how his 2 year old son died of a brain tumour. In it, he says that he doesn’t feel comfortable around people that haven’t had some form of extreme trauma in their life. It really struck a chord with me this time around (I’ve read the book before, but I did so in a single afternoon and I could barely make sense of the words through the endless stream of tears that were forcing their way out of my eyes). I’ve found myself listening to someone complain about something, but struggling to process their problem. All that happens in my head is a voice starts saying to me “you’re going to fucking die anyway; why are you even bothering having friends at all.” I’m being a little tongue-in-cheek there, but it isn’t miles from the truth.

I don’t understand how I can be so unhappy now, when the prospect of living is actually a very real and plausible possibility, yet I was so happy in those months of brutal uncertainty. It makes me feel selfish that I can’t be more grateful for the chance I’ve been given, but I know it is more complex than that. I hear people complaining to each other that they feel hungover, or how they hate Sundays; it bores me to my core. I feel an urge to seek out stories of intense pain and suffering. I find myself listening to more sad music. I think about how the sun is burning hotter and how the universe is doomed to die. It brings me comfort – my experience is futile in comparison. Children get brain tumours at the age of 2 and die, then their parents have to wrestle with the consequences. Why wouldn’t the sun burn hotter; who wants to live in a world like that anyway?

Cancer becomes an unwanted ghoul that rides on your back when you’re apparently clear of it. It has altered everything about me: my physical body has scars, my fingers and toes frequently seize up from cramp out of nowhere, my own mind haunts my every thought. During the results of my last scan at The Christie, the oncologist told me that some of the lymph nodes in the area where the tumour was located are dilated. He said they were not dilated to a point that they are considered a risk, but that we need to keep an eye on them. Ever since hearing those words, I’ve become an expert in lymphoma despite knowing absolutely nothing about it and trying to avoid Googling it at all costs. I’m constantly feeling my neck, cautious that it hurts and worried that I am developing lumps there; I vaguely know that lymphoma can show signs in the neck, so my mind ensures that I have a steady stream of anxiety about it, which seems to manifest as actual pain in my neck. It isn’t all in my mind, I really do feel things around my neck that I never used to, but I don’t know if it is just tension, or me perpetuating my own narrative. Even my chin bone has started to hurt and in one particular spot, I get a sharp pain when I turn my head in a certain way. I don’t understand any of it. It terrifies me.

I get similar feelings around my armpits, but it isn’t as pronounced as the neck pain. Sometimes, I think there’s a lump there too. For some reason, I find it easier to depart from these anxieties, though. Probably because I remember that I have a neck still, then I remember that I’m an expert in lymphoma, and I know that it always undoubtedly shows itself as a pain in the neck, and I remember that I also have a pain in my neck, so I determine that I have lymphoma. Lymphoma of the neck. 1 week to live. I sit in bed until 2:00am and don’t sleep a wink. What will I do with my last days? Fail at writing a book… I’m good at that. On top of this, there is the aforementioned absentness that I feel towards the world around me. I manage to feign interest for a while, and sometimes I actually am interested, but it inevitably gives way to the more difficult thoughts.

I’m working again, which actually brings a lot of relief. It is nice to travel into the office, which I do twice a week. I’ve been reading a lot more, and the journey ensures that I do at least an hour and a half of it on those days. Work gives me a reason to be interacting with people too. We’re talking about this project or that issue, and there is structure to it. It feels useful. My neck stops hurting so much because I’m focused. But then I return home and I feel like I’m a drag around my wife, then I look at my dog Lucy and get worried that she will think that I abandoned her if I did die, and I won’t be able to tell her that I didn’t. Nothing can just be good; I manage to take good things, process them through my negativity-lense, then beam them back in a shade of strident bleak. It pisses me off beyond all measure, and then I get angry at myself for doing it. The spiral continues.

It just feels so inescapable with pancreatic cancer. I have to remind myself that I actually know people who are 2, 3, even 10+ years clear of having the cancer; that it is possible to get there. I just can’t convince myself that it will happen to me. I feel like I’m a sitting duck, waiting for the symptom that turns into the cancer that will kill me. I don’t even have a pancreas anymore. I don’t know what the possibilities are in terms of things that can go wrong, but I’ve read enough stories of people having reoccurrences, of people being 2 years clear and then dying anyway, so I’m already convinced of the outcome.

It’s always been a problem of mine – I’ve obsessed over death in a way that I’m sure many people do, but I’ve felt vindicated beause I’ve then been diagnosed with a deadly cancer at a young age. I remember sitting in the hospital bed after being told of the seriousness of the cancer and thinking to myself “I knew this was going to happen. I always knew it. I didn’t know what it would be, but I knew something would happen.” It is hard to kick that feeling now. But, something else has happened which may be spurring these feelings on.

Recently, another good friend of mine has been diagnosed with cancer. He is even younger than I was when I was diagnosed. Luckily, all the signs are pointing in the right direction. There doesn’t seem to be any spread, and they believe that they have caught it very early, though they can’t confirm this until they have removed the tumour in surgery and done a biopsy on it. I don’t want to say what the cancer is, and I don’t want to give too much information on the story, as it isn’t my place to say, but he is dealing with it incredibly well.

Hearing him talk about the diagnosis – how he felt like it was going to be bad news when he got a call from the hospital saying that he needed to go in for an appointment sooner than planned, how he saw the nurse point him out in the waiting room, how he was the youngest there by a number of decades, not years – felt very familiar. It felt weirdly nice to speak to someone close to me about the disorientation you feel in those meetings – how you’re told not to worry, but are then given a leaflet on dealing with cancer, and are assigned a clinical nurse specialist who will “assist you through the coming weeks and months”. Suddenly, you aren’t a thriving 20-something, you’re a cancer patient. It’s hard to adjust to, but I know he’ll be ok. I sincerely hope that I am too, despite all this talk of death and nihilism.

I was recently the best man at my best friend’s wedding. It was an amazing day, and they put their heart and soul into organising the event. As is tradition, I had to write a speech. Going through the process reminded me how much I enjoyed writing. Finding solutons to awkwardly worded sentences, trying to convey an emotion in the right words – it is a complex riddle that I always enjoy engaging in. It convinced me that I should write again, so, today I wrote for an hour on my book, before deciding that I am going to come on here and throw as much negative bullshit at the wall as I can. I wanted my first post in a while to be positive and jovial, but then I wrote a few paragraphs for the book that I felt proud of, and decided to blow off some steam on the blog. I think it has helped.

On a more positive note, I am feeling physically much better than I was after the mop-up chemotherapy, other than the psedo-pain in my neck and armpits. My life is different and it is taking a lot of adjusting to. I’m eating better than I ever have, and I’m getting out walking a fair bit, which is nice. Despite the tone of this post, I am finding happiness here and there, but it is a battle to stay in those places. Perhaps that is just how it is post-cancer. I was so razor focused when I was actively fighting cancer, and the outcome felt so uncertain, that I found it sort of easy to be happy. I had the ultimate objective in front of me – do whatever I can, just stay alive. Once that is gone, I found myself questioning whether that is still the goal. No doctor will confidently tell me that I am definitely cancer free, and I am yet to find a medical professional who will reassure me that I am likely to survive in the long term, so I am well within my rights to feel a little nihilistic and defeatist. Just writing this post has made me feel quite a lot better, though. Now that the clocks have gone forward, at least the evenings are lighter and the temperature is getting warmer. My next scan at The Christie is next week, so I’ve got a healthy dose of scan-xiety coming up. Perhaps if the results of that are positive, I’ll spoil myself and write something nice on here. Fingers crossed.

Mouth Ulcers and The End of Chemotherapy

25th January 2023 godley93Blog, Cancer, Chemotherapy, Health, Hospital, Lifestyle, Massage, Nurse, Pancreatic Cancer, Positivity, Recovery, Treatment, Ulcers11 Comments

The Chemotherapy Diaries

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.

Sonder

29th September 2022 godley93Blog, Cancer, Chemotherapy, Diabetes, Health, Hope, Hospital, Lifestyle, Pancreatic Cancer, Recovery, Scan, Scanxiety, Surgery9 Comments

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

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

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

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

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

The ‘Sonder’ Tattoo – During Masters Year, 2015

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

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

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

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

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

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

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

I cringe internally whenever I read that after (insert treatment or surgery) someone feels they'll be cancer free. I honestly hope that person will be free of this crap, but how many do we know that find out a short time later that the cancer is still there or has metastasized?
— Mindy (@MinThomp) September 25, 2022

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

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

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

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

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