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…

2024; Year of the Dragon

5th January 20245th January 2024 godley93Baking, Blog, Cancer, Chemotherapy, Cooking, Dog, Health, Lifestyle, new year, Pancreatic Cancer, Recovery, resolution, Writing6 Comments

2024. It’ll take an entire month just to naturalise writing the ‘4’ at the end. The ‘3’ and I had become friendly with each other, but it’s all over now, and it’ll never come back. I’m mentally scribbling down a few New Year resolutions in my head as I write this…

“Keep not dying of cancer…or anything else.”

Hmm, it’s not the snappiest resolution. It’s not the kind of thing I want to shout too loudly at parties, either.

“Stay alive”

A little bit obnoxious and non-committal. It makes me sound like I have problems holding myself to account, so I opted for the resolution with the lowest requirement in terms of actual effort. Perhaps I don’t need a resolution – I never usually bother, so why start now?

Staying alive is actually a lot of effort for me. Anyone who has diabetes will attest to this fact. All I would require to fail my resolution of staying alive would be a packet of dairy milk, a glass of coke, and the decision to not bother plunging any units of insulin into my stomach fat, of which there isn’t too much these days. There never was, but it’s a good segue into my next humble brag.

2023 ended on a high for me. I still don’t have cancer (I’m smashing resolutions I haven’t even committed to), I’ve been exercising 6 days a week, and I’m managing to go out and do things with only a moderate fear of throwing up or feeling debilitatingly sick. Quite the feat for someone with half his insides missing; I hope you’ll agree.

The way that the schedule has shaken out for my 6-month scans means that every year is now punctuated perfectly at the beginning and middle with a progress scan. This year, my January scan has been scheduled for the 25th, and I received the letter informing me of that just a few days before Christmas. “Wonderful… Here we go again,” I thought.

Predictably, this information was the catalyst of a few days of fear and loathing in Las Daniel. I had some strange dreams that made me feel uneasy, and I crawled back into my pessimistic headspace for a while. Every stomach ache was another tumour, more aggressive and spiteful than the first one. Of course, then the stomach ache goes, and I get on with my life as if the whole thing never happened. It’s all good. The rollercoaster of life does run-eth on-eth, as Shakespeare once said (probably). I do this thing when I’m feeling a little glum about cancer where I listen to a lot of emotionally charged music, don’t speak to anyone about the fact that cancer is on my mind, and get very mopey. These periods are when I get most tempted to write a blog post. I seem to enjoy surprising my wife by not telling her how I’m feeling, only for her to find out when I post a really depressing blog post on the internet for all to read. I’m trying not to do that now, but it means that I am starving myself of the most appealing time to write. It does paint a negative picture of how I’m feeling, though. In terms of my online persona, most people probably think I was better at cracking jokes when I was eyeballs deep in chemotherapy. The scary thing is that I might have been…

I’m past the trepidatious stage now. Well, maybe the trepidation has been transferred from the category of ‘cancer scan’ to the category of ‘January planning’. Cancer fear has a certain entropy about it – always transferring, never burning out. My wife and I started the year by considering buying a new house, which was terrifying and mesmerising in equal portions. Potential is a fine thing, and there’s a lot of potential in moving house, but then you remember that it involves selling your current flat, moving all of that stuff you’ve accumulated into another place, AND dealing with mortgages again. All are very unpalatable to the individual who just wants an easy life. Just writing all of that reminded me why moving house is, in fact, dumb, bad for you and an illogical life decision. Wow, I forgot how decisive this blog makes me. I should write here more often.

Luckily, the desire didn’t last long, and we’ve decided that we’re happy in our 2-bed flat for now, pushed into the eaves of a 3-story building with no lift. I like the exercise of traversing the stairs, but I don’t think our dog appreciates us having to walk her outside each time nature calls due to the lack of outside space. She shares our bed with us, too, so she gets to share all her most intimate moments with us – lucky girl.

There are exciting things brewing in 2024. We, the human race, are nearly a quarter of a century past the millennium, which is absolutely meaningless in reality but emphasises just how quickly time passes for me. I have vague memories of going to the Millennium Dome as a 7-year-old child, but I have far more prominent memories of going there as a 20-something adult and drinking myself half to death in some of the bars dotted around the strange dome building, just after I’d first moved to London. The fact that people born in 2006 will legally be allowed to drink in pubs in England by the end of this year is a detail that feels even more alarming to me. We really need to slow this down, guys; I’m starting to feel anxious.

Yet, the passing of time has allowed me to feel peace with my life again after that treacherous year. Cancer came, and cancer went. Eventually, it is all a vague memory, more associated with a particular set of smells and feelings than any particular event. There are sad tinges which have retained their venom, like the morning of my first-ever chemotherapy session when I sat on the floor of the shower and hysterically cried. I kept my hand tight over my mouth to mute the sounds so my family wouldn’t hear – I didn’t want to worry them. Or the moment I was diagnosed, when I surveyed the room around me and saw my fiancé and mum crying, but I struggled to feel anything beyond validation. I knew this would happen to me; I’d thought about it many times throughout my life. It took a few hours for me to feel anything else. The whole experience was enigmatic, and it remains so to this day. Sometimes, I feel sad. Sometimes, I feel grateful. I think that’s normal.

Whenever I have to go to the hospital now, the smell of the disinfectant still makes me cringe. I developed a really bad association with it during mop-up chemotherapy. A nurse from Macmillan came to see me during one of the sessions because the staff had informed her that I didn’t seem to be acting like myself. I’d been sitting on the ward with my head between my legs and my eyes closed. The smell of the place made me want to throw up – nothing to do with the chemotherapy coursing through my veins, I’m sure – and I was starting to hate having to go there. The Macmillan nurse gave me a foot massage, claiming that it helped to relieve nausea. The whole experience was really calming, but it hasn’t stopped me hating the smell of hospitals.

Pancreatic Cancer Action recently asked me to write a blog post for their website. I’d done one previously when I was in the middle of the first regime of chemotherapy. They said that they wanted to kick the year off with a positive story to remind people that Pancreatic Cancer does have some happy endings, despite what the internet portrays about it (just google Pancreatic Cancer now if you want to know what I mean – it’s a very doomy topic indeed). I liked the idea, and I was happy to oblige.

As I read the piece back, I felt it was more negative-leaning than I had intended. It made me think about the role writing played in my cancer journey – how it provided structure when I was unable to work and allowed me to connect with others who were going through similar experiences. I started to feel guilty that I’d left those people in the lurch for all of this time, people who may still be suffering from the ailment that bonded us.

So, I’m here to tell everyone that I’m doing alright and that things are still positive, despite all the negative shit I always bring up when I put my finger to the keyboard (the modern equivalent of putting ‘pen to paper’). Diabetes still sucks, but it sucks less. Cancer still sucks and will never stop sucking. Recovering from surgery still sucks and probably will only get harder as more time passes, and I realise that I am no longer recovering and that I’ll always have issues with eating and exercising. I try not to let that stop me from trying, though. Plus, I’ve developed a relentless attitude for cooking and baking and spend a good 2 – 3 hours each day in the kitchen, so I’m clearly dealing with the eating issues in the most Freudian way possible. I’ll post a few pics of the cooking at the bottom just for fun. It’s my blog, so if I feel like posting pictures of stuff I’ve cooked and baked despite it barely being relevant, why the hell not, right?

The blog post for Pancreatic Cancer Action can be found here. For avid readers of this blog, it may not present any new information, but you might enjoy it anyway. I will aim to update this blog at least once a month in 2024. Maybe I’ll even call it my new resolution, alongside not dying. Taking on 2 New Year resolutions is quite the burden for someone who usually sets himself 0. We’re moving into the Chinese Zodiac Year of the Dragon in 2024, so perhaps it is the year to push ourselves beyond our human boundaries… a little bit over the top, considering I’m talking about setting New Year’s resolutions…

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.

My Episode of the Project Purple Podcast

24th July 2023 godley93Cancer, Diabetes, Health, Pancreatic Cancer, podcast, Recovery, Spotify, Stage 3, Surgery, surviving, Total Pancreatectomy, Tumour2 Comments

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

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

Project Purple Podcast Episode 254 – Surviving Pancreatic Cancer with Dan Godley

A Link to the Episode on the Website

A Link to the Episode on Spotify

Another Scan (L’appel du Vide)

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!

On… Denial

5th July 20234th July 2023 godley93Anxiety, Cancer, Denial, Depression, Diagnosis, Mental Health, Pancreatic Cancer, Post Cancer, Recovery, Topical, Writing6 Comments

In general, I am a supporter of being in denial. Not the type of denial that allows one to do something evil only to deny it was you, or even to deny that what you did was bad, but the type of denial which allows you to get through life with a little less guilt. The sort of denial that allows you to believe you did better in a job interview than you did in reality, protecting your ego just enough to allow you to do another one without breaking down into tears. A healthy dose of denial to help bat away the crushing existentialism of waking up for work every day. The type that helps us forget that we won’t be able to retire until we’re over 80 years old, where we’re forced to play the lottery every week to try and scrape together a more sizeable income because the unregulated banks spent all of the money in the pension pot.

Denial is actually an essential ingredient in the life of a cancer survivor. Without denial, I’d spend my life in a tent outside of A&E, making the daily commute inside the building to inquire about every pain, ache and fear that my broken body seems to flare up with each day. There’s an abundance of them, believe me. Plausible deniability is the only plausible option sometimes. I’ve gotten good at mediating with my own internal doom monologue. I’ll adopt trickery to challenge my self-sabotaging tendencies. “Well, if cancer was going to kill me, it had a good opportunity to, but it didn’t.” My mood yo-yos from unbreakable confidence in my abilities as a cancer survivor to absolute terror at my prospects as one. I am actually well aware that I’m not a seasoned cancer survivor, but it feels good to deny the suggestions that it was all down to good luck and a very competent team who were treating me, and instead believe it is due to some innate skill I have to fight cancer… when I’m feeling good about myself at least. Perhaps I should fight a bear next time I am feeling like a world-beating cancer killer; that would put my self-confidence in my abilities as a fighter to the test. I’m pretty sure bears beat cancer in terms of strength, but maybe not in persistence.

There should be a concept of white-denies in English, so long as it doesn’t get misconstrued as some sinister extremist ideology, which it might. In my mind, they would be similar to white lies – things that we say that are technically lies but are over trivial matters, where lying is more beneficial, or where telling the truth is unnecessarily hurtful. For example, if a random person at a party asks me why I’m not drinking that evening and I reply that I am not feeling well, they would probably accept this reason and move on. In actual fact, I just didn’t want to drink and feel totally fine. Has this lie hurt anyone? No. Has it carved out an easy path through the conversation? I’d hope so. It’s a lie, but a cute little white one. Whereas if I said to them it was “because I had shit loads of cancer a year ago, have barely survived it, and am now scared of anything that could be damaging to my health,” they may be a little intimidated. It’s a little bit too much to put that on a random person at a party. Most people go to parties to have fun, not be a random man’s agony aunt.

In that vein, an example of a white-deny could be as follows… I am sitting on a train and a person on crutches gets on. I’m sitting in a seat which says ‘Priority’ on it, so I should clearly move for this person, but I am deep in the middle of watching a really important video on Youtube about how the hulls of large cargo ships are cleaned whilst the ships are still floating on the ocean (my most recent ‘Youtube Rampage’ has been watching videos on oceanic engineering challenges and how human’s overcome them – it is enthralling stuff, honestly). As a result, I don’t see this person get onto the train. Someone sitting across from me stands up and offers them the seat. The commotion around me causes me to look away from my deeply exciting and interesting video, and I realise that someone has offered up their seat in lieu of me doing so to this person struggling with crutches. I feel deeply bad about this, but tell myself that I would have given up my seat had I realised what was going on earlier. I deny the idea that I am the type of person who would force this responsibility on someone else, as that would make me feel like a bad person… and I think that I would have given up my seat had I realised, so it makes sense to deny a version of events where I purposefully didn’t look up to abscond myself from the responsibilities which I accepted by sitting in the priority seat. This hasn’t happened by the way, just in case you’re wondering. I always give up my seat… so long as I notice a need to…

Today, on the short 5-minute walk from the train station to my house after work, I saw a man decanting a can of strong beer into a water bottle whilst holding a cigarette in his mouth with just his lips. He was pulling on it and exhaling the smoke without touching it with either hand. If that wasn’t impressive enough, he was also shouting abuse at people walking past him, saying something along the lines of “All of you can fuck off.” Although it probably shouldn’t have been funny to me, I just couldn’t help but laugh to myself. I didn’t understand why he was decanting a beer into a reusable water flask, what his issue with the world was, and why he was so outwardly aggressive about it. I had started writing this post whilst on the train, so the subject of denial was heavy on my mind. I started evaluating the situation in my head and thinking about that man’s level of denial about his actions and their impact on the world around him.

The situation made me think about deniability, and how deep someone must be in it to behave like this without having some instinctive repulsion to doing so. It isn’t the decanting beer into a water bottle necessarily, or the no-handed smoking of the cigarette, but the abuse he was throwing at random people who were walking past. I just didn’t understand any of it at all. I’m sure he doesn’t think that any of it is rational, acceptable behaviour, but he must feel like it is warranted, for some reason. How deep is he in deniability to think that random strangers walking past him deserve to be hit with a barrage of abuse? Maybe he isn’t in denial at all, and he just doesn’t care. I’m not quite at the ‘shouting at random people’ stage in my grief, but I’m closer to it than I was a few years ago, so I can sympathise a bit. One day maybe I’ll be able to smoke a cigarette with no hands and tell a stranger to fuck off without feeling bad about it. I’m not sure I want that for myself, but it’s a strangely entertaining thought.

Denial has been failing me these past few days. I’ve felt especially tired out and more exposed by the niggles I have around my body. A few times after eating recently, I’ve felt strange. Sometimes it is a fairly straightforward sick feeling, other times it is a sort of heavy feeling around my stomach. I get a bit of a stabbing pain in my groin too, and earlier today I felt a shooting pain going up my arm and into my shoulder. I’ve also been feeling really fatigued, struggling to stay awake through the day and needing to sleep a lot more than usual. The whole thing has left me feeling hazy, and I’ve been fantasising about the scarier parts of post-cancer life… a constant obsession with imaging how the world will work without me; my wife crying in our bed whilst surrounded by our possessions, how far outside of my friendship circle the grief would reach upon hearing the news – whether it is a friend, a friend of a friend, or a friend of a friend of a friend. Who would be the break in the grief chain, the person who sort of shrugs and goes “that sucks.” My response to all of this is to blunt my moods, constantly operating with a dampened sense of being; struggling to fully enjoy anything positive, and soaking up everything negative. It’s tiring.

It’s given me a new-found respect for denial for without denial, my entire life would be like this. Many of these physical symptoms that I am experiencing are actually common in my life these days, but I usually handle them better than I have been these past few days. A line needs to be drawn – one which allows me to take things seriously where required, but one that also allows me to accept that a level of discomfort is normal for me now, after such a big operation and so much chemotherapy.

I have no idea how to draw such a line, and the generic tips that the oncology team gave me for looking out for symptoms don’t really help. “If you consistently feel sick after eating, seek help,” they said… “If you feel extreme fatigue, or notice your energy levels have dropped, get in contact with us.” I’d spend my life at A&E if these tips were anything to go off. Instead, I have to learn to embrace the denial in a way that lets me proceed with my life without getting tangled up in every feeling. Fantasising about what the world would be like without you is a depressing affair, for myself and the ones unlucky enough to be around me through such periods. It also feels incredibly narcissistic to focus on these things, but it is difficult to not for some reason.

And with this post, I have broken the pact that I made to myself to always keep these posts lighthearted, and try to disconnect them from my experience of cancer as much as possible. I guess I need to utilise my powers of denial to counteract the feeling that I’ve let myself down with it. It’ll be good practice at least – my denial powers are starting to fail me, so they obviously haven’t been receiving enough training. If I can start flexing my deniability muscles in aid of rejecting the idea that I’ve failed at keeping these posts lighthearted, perhaps I can then ignore the issues I’ve been having and get back to writing things that are fun to read. Let’s see how that goes…

Diabetes Anonymous

25th June 20232nd July 2023 godley93Blog, Diabetes, Emotion, Experience, Family, Health, Humour, Mental Health, Positivity, Recovery, Support, Topic1 Comment

The Dexcom Device in my Arm Which Sends Readings to my Phone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Diabetes for Dummies

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’.

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.

Failing the Blood Test

6th December 2022 godley93Blog, Cancer, Chemotherapy, Death, Health, Lifestyle, Mental Health, Pancreatic Cancer, Recovery, Treatment8 Comments

The Chemotherapy Diaries

Last Monday, I read a victim story posted by Pancreatic Cancer Action on Twitter. I try to read them when I see them, as I’ve written for the charity a few times, and they generously shared my story on their website before. It feels like a tit-for-tat situation – people read my story, so I want to do the same in return. What I read that day instilled the fear of god in me, though, and it continues to haunt me.

There are a few things that are creepy about the story. Firstly, the subject’s name is Daniel. Who else is called Daniel? You guessed it – ME! Daniel was also very young to be diagnosed with pancreatic cancer, being only 37 years old. His diagnosis was stage 2, and he was able to go straight for surgery, something which I wasn’t able to do. On the day of his surgery, however, he failed the mandatory Covid test, and his operation had to be delayed. When they finally performed the operation, they opened him up to find that it had actually spread to an artery, like mine had. The surgeon thought in his feet and managed to get the whole tumour out, with good margins, by performing a total pancreatectomy. Who had a total pancreatectomy, and had their tumour removed with good margins? You guessed it – this guy writing the blog! Hopefully, you’re 2 for 2 in the Ebb and Flow quiz today.

So far, so good. These stories are always hard to read, especially when you have pancreatic cancer yourself, but there wasn’t anything abnormal about this story yet. I was reading the story and thinking about all of those pivotal moments in my journey so far – the horrific news of the diagnosis, the anticipation before the surgery, and the elation upon hearing that the tumour had been removed with good margins. Then, I started to read some information which I couldn’t tether to my personal experiences so far…

Daniel started a regime of mop-up chemotherapy. Can you guess what regime he was following? You might be able to… he was on the exact same chemotherapy routine as the one I find myself on. Can you see a theme emerging?

Four cycles into his treatment, he became very ill and began projectile vomiting. After going to A&E, he learnt that his cancer had returned, was now in the bile duct and stomach, and was essentially out of control. Daniel was moved to palliative care. Despite being given only days to live, he managed to fight on, with the oncology team eventually deciding to put him on further chemotherapy after he miraculously started holding food down again. Unfortunately, after 3 further cycles of the new treatment, his tumour markers flared up again, and the decision was made to stop.

On June 5th 2022, my wife’s birthday, he passed away.

The story is tragic by anyone’s standards, but it hit me differently. So many things jumped out of the page at me. I tried to process what I had read alone. It didn’t work. I mentioned it to my mum, and she immediately broke into tears. I sent it to my wife, who was working down in London; she didn’t speak to me for hours, before ringing me and telling me that it had really affected her. I felt terrible, yet it stayed on my mind.

I’d written myself into the tale… Whilst recovering from surgery, I had to go into A&E after projectile vomiting for about two hours, but it turned out to be an issue with my bowel. What if that had been a spread? I’d broken down in tears in the hospital at the mere thought that it could be; I can’t imagine how I would have responded if it had materialised to be true. As I sat there processing what I had read, I imagined receiving the news that Daniel had at the hospital when he had gone into A&E. I’m not sure if it is how the article is written, or if I can just relate to it incredibly well, but the whole thing emanated pain and struggle to me. I was living it.

Then I thought about my treatment days. The main thing that keeps you positive about attending chemotherapy is the knowledge that it is the primary device you have in fighting your cancer. I hadn’t given much thought to the idea that you could show up to a chemotherapy session, only to be told that your blood results have shown a spike in the tumour markers and that you’ll be moved to palliative care. Of course, I knew something like that was technically possible, but I assumed that it was such a rarity, it was almost not worth worrying about. Now I was picturing myself walking into the chemotherapy ward, greeting the nurses with a smile and making some inane chit-chat about it being cold outside, only to be met with those eyes that I’d seen before my diagnosis. People steel themselves when they’re delivering life-changing information – it is palpable before a single word leaves their mouth; you know something is wrong. “Your markers aren’t good, Daniel. The team is deciding what the best course of action is, but for now, your treatment is on pause.” I was writing the script and everything. It felt like it was really happening to me. My sleep was laboured that night. I’m still struggling to shake it all off.

The next day I was due to have treatment at 14:00. At around midday, my phone started to vibrate. I looked at the screen and saw ‘No Called ID’. The hospital. I took a deep breath in and wondered why they would be calling me. I’d done bloods the day before. My mind was already hypothesising.

“Hey,” I said, nervously.”

“Hi, Daniel. It’s The Christie here. I’m sorry to tell you so late, but your liver functioning is extremely high. I can’t get hold of the oncology team at the minute, but I’m sure they’re going to tell me to delay your treatment by a week.”

This had happened to me before. I hadn’t thought anything of it last time. My liver is a busy body at the minute – trying to process all of the chemotherapy drugs (and the odd beer I have when I decide to ‘treat’ myself). Things weren’t the same this time, though. After reading Daniel’s story, I was prepared for a disaster. It was happening.

“What does that mean? Could it have spread?” I asked.

I honestly can’t remember what the nurse responded to me, but she wasn’t shocked by the question. She reassured me that it is very unlikely to be and that my liver likely just needs a break from the drugs. She then had the presence of mind and heart to ask me why that had been the first thing that occurred to me. I explained the story I had read the night before. She sighed and made a light-hearted joke.

“I hope your mum and wife have banned you from the internet for a few days.”

She told me that the nurses were all there for me, that I could ring them whenever I needed to, and that I need to stay positive. It was helpful to hear those words, but I’d be lying if I said it resolved the issue. It didn’t. I spent the rest of the week feeling incredibly conscious of every abdominal pain, fantasising about it until it grew out of control. I didn’t need a scan or a doctor; it had spread. I knew it as a fact.

I’ve managed to settle down a bit since last week. Today I had treatment again. Apparently, my liver functioning is still high, but it is within the permissible limit. The thing that is still bothering me is how ill I seem to feel all of the time. This morning, after a week off the drugs, I was feeling better than I have been. I managed to have a solid morning of work where I finished a few things that had been hanging over my head. Treatment was at 14:00, and after about 10 minutes of being hooked up to the line, I started feeling notably worse again. Now, I feel tired and sick, and the nerves are starting to come back.

For some reason, one of the first things I thought about when I got home was how happy my dog Lucy is every time she sees me. It then occurred to me that if I did die, she’d never be able to understand what had happened to me. In my mind, she would forever think I’d left her and would be expecting the next knock at the door to be me back. Maybe I’m dramatising it too much. Maybe she wouldn’t even remember me after a few months. The feeling that she would always be waiting for me to return feels harder to process in some ways than my own family dealing with my death. At least they understand that this is all part of life and that someday the same will happen to them. I doubt a dog is aware of such things. It is all just a stupid, morbid thought anyway, but it is upsetting nonetheless.

I’m really not sure if it is because of the article I read, or if I’m just in that sort of mood at the minute. It frequently feels like life is just happening to me at this minute; as if I am not an agent in its happening. I feel myself getting frustrated at things that wouldn’t usually bother me, and I’m spending a lot of time being annoyed at myself for not being more present, or for not managing to enjoy things as much as I want to.

Two of my close friends have recently raised the subject of Survivor’s Guilt with me. After talking to them about the way I’ve been feeling, they both responded with the same thing independently of each other. Perhaps I am experiencing a bit of Survivor’s Guilt, but at the same time, I don’t classify myself as a survivor yet. Things are still very early on, and as Daniel’s story showed, a couple of months don’t mean that much when pancreatic cancer is involved. There probably is an element of it in play, though. It isn’t nice to read about someone’s story that is so similar to yours but with the worst outcome possible. One side of me selfishly doesn’t like it because it opens up that reality as a realm of possibility for my own fate, but it is also because I can relate to so much of the story. I’ve been in many of those positions spoken about, and I know how it felt to be there. The faces of my loved ones wet with tears; the sternness of the diagnosis. That feeling of utter helplessness when the reality sets in that your future feels more uncertain than ever before. It’s horrible.

But the tedious trip through chemotherapy drags on, and I’m grateful that it does. In spite of all of my negativity at the minute, I am managing to gain some useful perspective on my situation. I’m still plodding along; I’m still planning on moving back to London in a few months, so I must have some faith in the likelihood of me surviving this thing a little longer. My amazing friend Dee told me that I was probably in survival mode last year, which would have been helping me kick on in the hard times. I think there is truth in that. This time everything feels like a chore, and I just want to be rid of the entire experience. It was almost a relief to find out that my liver functioning was bad in some ways, as I thought the sickness was all in my head for a week or so. Now I just need that poor liver functioning to not result in some kind of spread of the cancer. I’m not drinking beer during the World Cup games, and I’m trying to eat as well as I can when I feel like eating… how much more can I give? I already hate every pancreas in the world, don’t make me start hating livers too.

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Amazing Thing No 1

Amazing Thing No 2

Another Cancer Story…

The Chemotherapy Diaries

The Chemotherapy Diaries