Another Scan (L’appel du Vide)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Total Pancreatectomy: 1 Year On

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

The Road to Recovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Cancer: When “Young” Doesn’t Equate to “Fun”

7th May 20237th May 2023 godley93AYA, Blog, Cancer, Charity, Emotion, Fundraising, Growth, Happiness, Health, Humor, Lifestyle, Mental Health, Oncology, Personal, Support4 Comments

I originally wrote this with the intention of sending it to a few media outlets, but I never did and it has been sat in my drafts for a while, so I thought I’d just post it. Enjoy!

The English language has some interesting colloquialisms, especially around the concept of being young. Many of them aim to bestow wisdom upon the subject, such as the popular idiom “youth is wasted on the young”. Personally, I find the risqué ones more engaging, like “young, dumb and full of…”. I won’t finish it off, no pun intended.

I feel strange describing myself as young. Not because I don’t feel young, or even that I don’t consider myself to be young, but because I’ve heard so many nurses, doctors and oncologists use the word to describe me, that I have started to associate it with my diagnosis. It is usually said in a tone of pity with accompanying wide-eyed sympathy. People are nice, and I’m grateful for that, but I’m still an adult who craves a more complex response than wide-eyed pity. For I was diagnosed with stage 3 pancreatic cancer at the ripe old age of 28, placing me firmly in the Adolescent and Young Adult (AYA) category of cancer sufferers.

To qualify for this coterie, you must be between the ages of 15 and 35, and you must, of course, have cancer. We don’t let cancer muggles sit at the table with us, just like we don’t let grey-haired sufferers of the malady have a piece of the pie either. It is our way of establishing exclusivity in a club that no one would ever voluntarily join. Previous cancer sufferers are welcome too, seeing as they can contribute to the woes of emotional turmoil that come with a cancer diagnosis in your youth, but that is it. Ok, perhaps those bereaved due to an AYA person dying of cancer can also come along. Perhaps they can invite their parents too. And their dog, who probably misses them dearly. But that’s it – period.

How it works if your age is borderline, or if you cross the bracket during your treatment, I’m not entirely sure. Let’s say that I was 37 years old – would I be turned away from the focus groups? Would my submissions to the AYA magazines be printed off by the editor, only to be scrunched up and thrown into the bin? I’d hope not. Lucky for me, I qualify, being the ripe age of 30 now, and I have a few years left before I must consider my maturity into the next category of cancer sufferers, whatever that is.

I’ve been navigating the world of being ‘young’ with cancer for over a year now. Things have turned out relatively well for me. The first seven months of chemotherapy showed positive results, shrinking my tumour by about a third. Despite this, I was told that the progress was unlikely to be enough for my tumour to be removed in surgery. Due to my age and health, the oncology team still passed my case over to the specialist surgeons for review, in hope that something could be done, even if a full removal was not possible.

The universe had other plans. I woke up following my surgery to the news that my tumour had remarkably been fully removed, but that they had to also take out the entirety of my pancreas. If that wasn’t enough to process, a few other things were removed too – over half of my large intestine, gallbladder, spleen, bile duct, some of my stomach and, for good measure, some of my liver. Two major arteries were also reconstructed, a sentence which still doesn’t mean a lot to me; it conjures up images of a surgeon laden in green overalls but with a yellow hard hat on and a hammer in hand, which emphasises how immature my understanding of surgical procedures is. I wish to keep it that way.

The recovery was harrowing. I wondered if I’d ever feel normal again, especially now that I am insulin dependent (AKA Diabetic). Nearly a year on from the operation, I do feel much better than I thought I would, but everything is very different. My life is punctuated by random abdominal pain and when I walk, I feel tension in the area around the scar, which intricately snakes across my abdomen. It feels strained. Most of the time I manage to forget about it, but it does bother me from time to time.

Sometimes, after meals, the skin around the scar bulges out, making my stomach look malformed. It can feel particularly uncomfortable when this happens, and it is the primary reason that I am slowly adjusting my diet, eating less of the foods which seem to make this happen. Of course, it is mainly carbohydrates, which is easily the best food group, but as I am diabetic, I already view them with suspicion, so it is probably for the best. Carbohydrates are, after all, trying to kill me. As the body breaks them down, they cause the blood sugar levels to increase. When I eat them in the evening, I find my diabetic alarm going off more frequently on my phone throughout the night. It is a sharp alarm noise and it is awful to wake up to. I’m essentially flipping the Pavlovian method on its head and treating myself to not eat carbohydrates in the evening by being woken up by a piercing alarm sound all night. It is slowly working, but carbohydrates are a hard habit to kick. Don’t even get me started on not eating chocolate in the evening.

One advantage of the scar is that getting it out has become my new party trick. It used to be my ability to put the entirety of my fist into my mouth, but I’ve retired that move. I was once at a party where someone did a backflip in front of a room of onlookers, who all burst out into cheers and applause as his feet landed safely back on the ground. “That’s a real party trick,” I thought to myself. I like to think that these days I’d give backflip guy a run for his money. A scar as big as mine is adaptable – one day I was hit by a double decker bus, the next I was attacked by a shark. The scar is all the proof I need. It probably wouldn’t erupt a room into jeers, though. It is more in the ‘interesting’ category as opposed to ‘enthralling’. Doing a backflip is interesting and enthralling… It really is the ultimate move. I don’t attend parties anymore, so I guess it doesn’t matter.

Of the things I’ve learnt from going through a cancer diagnosis, the most prominent lesson has been that people change in life. I found myself having to mould aspects of my personality into a different shape to better accommodate the challenges that I was now faced with. The treatment is gruelling; I constantly surprised myself with how much I could withstand. Chemotherapy, surgery, the feeling that death was always just a few steps behind me. I found a way through it all, but the journey wasn’t smooth. Support from friends and family is essential, but even that wasn’t always enough.

It is difficult to unload your true fears and compulsions onto people so close to you. They are going through it too. In some ways, it is harder for them, as they have no control over the situation. Sometimes, they are pedestrians, standing idle on the side line whilst you face obstacle after obstacle – the pain, fear and devastation which you become accustomed to, but that they never quite understand the extent of. The unknown can be more dangerous to the individual as it presents an inexhaustible amount of horror; friends and family can be locked in limbo, whilst you travel the length of your mental capacity, in search of something to keep you going, no matter how bad things get.

This is why the AYA community serves as such an important tool for people like me. Something that you are commonly told when you are young with cancer is that it “should not be happening to you.” Why wouldn’t it be happening to me? Why not now? Sometimes we draw the short straw, and there is no reason as to why. When I was first diagnosed, I wondered what I did to deserve this. Those thoughts do little to comfort you, and when you must deal with the reality of having cancer every minute of every day, you don’t benefit from having a victim complex about the situation. Stuff happens in life and sometimes, that stuff happens to suck for you in particular. It isn’t easy to keep that level of clarity all of the time, but it is a helpful tool to lean on when going through a hard time, whether that is physically, mentally, or both.

Conversely, there are still people that meet the news with a strange callousness that I don’t understand. The people who hear that you have cancer, and respond by saying “you’re young and healthy, you’ll be fine.” I’m just glad that these people don’t tend to be oncologists, because I think the death rate among AYA cancer sufferers would be far higher if the consensus was that anyone young is invincible and, thus, will be fine. One of the first things I read after being diagnosed with my cancer was that people who are diagnosed with it seldom live to the 5 year mark from diagnosis. No one can prepare themselves for something like that, and to fall back on the notion that age guarantees survival would be careless. Optimism is a powerful tool, but naivety can be destructive. Sometimes, facing up to the reality of the fight at hand helps an individual to push their limit further.

AYA charities provide a space where young people with cancer can speak and relate to each other. In my experience of joining support groups of all ages, where many attendees were over 60, I left feeling more isolated. It reinforced a feeling that what was happening to me was unjust. AYA reminds you that you are rather unremarkable and that there are others experiencing very similar feelings to you. It makes a huge difference.

Further to this, many cancer charities are set up to support a traditional person with cancer, but not anyone else. I commonly find opening hours of charities to be Monday – Friday, 09:00 – 17:00. Although I understand why this is, it isn’t helpful having a workshop or support group in the middle of the day. I’m not retired, and I can’t afford to be signed off work forever. The AYA charities are better equipped for this, and I have attended many evening sessions with them, where I am not so constrained, and having to beg for time off in the middle of the day to attend an event.

Despite all of this benefit to young cancer sufferers, AYA charities go relatively unnoticed. Because of this, I wanted to write a piece on how much I appreciate their existence, and how they have helped me through some tough situations. In the UK, I have attended a few Shine events, and am looking to join their summer meet up in London now I am living back here, and in the US, I have had multiple pieces printed in Elephant & Tea’s magazines, as well as joining some very interesting events which they run; some of the stories I have read in their magazines have really resonated with me, and I find myself going back to read them frequently.

So, although you may not be an AYA cancer sufferer, I’m sure you have experienced the negative effects that cancer can have on an individual, whether they fall within the AYA category or not, and on the people around them too. In future, if you are looking to raise money for a charity, consider seeking out one of these smaller AYA charities and doing it for them. I know that they’ll really appreciate it, and you’ll be contributing to a service which makes a huge difference to people like me.

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.

Physical and Mental Wellbeing in Fighting Cancer

2nd June 20222nd June 2022 godley93Book, Cancer, Diet, Health, Lifestyle, Mental Health, Pancreatic Cancer, Positivity, Recovery, Treatment, Wellbeing7 Comments

Lucy and I, Staying Mentally Well Together

In general, I’ve stayed away from cancer literature. There seem to be so many different approaches and opinions that you can find evidence for any approach that you want to take. Want to eat bacon for every other meal? Find a website that promotes The Atkinson Diet and mentions a random study on decreasing cancer cell growth – success! A reader of the blog reached out to me on Twitter and recommended a book called Anticancer: A New Way of Life by David Servan-Schreiber. After Googling it and reading about the author, I was certainly interested. He managed to survive for almost 20 years after being diagnosed with a brain tumour, something which is absolutely amazing and shocking. Dealing with such a diagnosis for that amount of time is astounding, it must have been extremely draining both physically and mentally. He was treated for a brain tumour twice during this time, before unfortunately succumbing to brain cancer in 2011.

Some of the accolades awarded to him in his lifetime are quite astonishing. He was one of the founding members of the US arm of Médecins Sans Frontières, a medical humanitarian organisation best known for its work in conflict zones. The organisation received the Nobel Peace Prize in 1999. Looking through his work, he seemed to dedicate himself as a physician, assisting sick people in conflict zones for years. Places he spent time include Iraq, India and Kosovo, among other places. The accumulation of his work resulted in him being awarded the Pennsylvania Psychiatric Society Presidential Award for Outstanding Career in Psychiatry in 2002. What all of this information said to me is that this is a person who really does want to help people; he dedicated his life to doing so, and likely put himself in a lot of danger in the process. Couple that passion for helping others with a scientifically trained mind and a personal vendetta against cancer, and you have an incredibly powerful set of circumstances. It made me want to read the book. I ordered it off Amazon (I’m afraid to say), and it arrived the next day.

I’ve had it for a few days but only started reading it properly around two days ago. Some of it has been difficult to read, which is slowing me down. I’ll come back to that, though. The version I got is a second edition. Before the chapters started, there is a preface where the author discusses the changes between editions. Part of those changes was to add more evidence to chapter 9 – “The Anticancer Mind”. I haven’t read it yet, but he states that the chapter focuses on how keeping yourself mentally well can help your body fight cancer. The author states that people speak much more highly of the chapters on diet and foods that promote the healthy processes in the body which fight back against cancerous cells. These chapters seem to be Chapter 8 – ‘Anticancer Foods’, and Chapter 8(a) – ‘Anticancer Foods in Daily Practice’. Again, I haven’t read any of these chapters yet, but it seems fairly obvious what they are about; what foods can help promote the body’s natural defences against tumours and how to apply them in your day to day life. I may be proven wrong of course but if I am, that is because the author hasn’t described the chapters well enough. I, Dan Godley, can do no wrong! Although there is that phrase that to assume makes an ass of you and me. I’m only making an ass out of myself here if I am wrong. The author hoped by adding more case studies into Chapter 9 that people will take the anticancer mind more seriously and recognise its value.

I started thinking more about why people are less complimentary about a chapter on mental wellbeing as opposed to dietary changes. It is clear that diet is something physical. We generally know what foods are considered healthy. It would be more than a faux pas if we sat telling our work colleagues that we were on a diet over lunch, to help explain why we were digging into an entire cake and washing it down with squirty cream. There are some whacky diets around, but this would constitute a total failure of the educational system.

Things like pulses, fruit, brown bread etc, are considered to be healthy (or healthier) foods. Foods that are processed or contain a lot of saturated fat are generally thought to be less healthy. Of course, there are healthy fats, like those you get in nuts, but I believe that it is still better for you to consume these things in moderation. Similarly, you will benefit from an amount of things like butter in your diet, but they probably aren’t good in large quantities. If you regularly eat out at restaurants and wonder how they make the food taste so nice, the answer is probably butter and/or oil; lots of it. If you are trying to do some sort of diet, it is much better to make your own food. At least you know for certain what has been put into it and can control the ingredients. For example, Ottolenghi, a favourite chef of mine who makes incredible cookbooks, frequently uses large quantities of olive oil in his recipes. I will frequently tone this element of the dish down unless it is being used to create a flavoured oil, which I can save to use on other things I make.

When we have been eating healthier foods, we typically will have tangible evidence that it is benefitting us. Our weight may go down, we may feel more energised or, if we are also exercising, we may notice a change in the way we feel whilst we’re pushing our bodies. If I eat a takeaway and run the next day, I sometimes feel as if my body is having to work harder to produce the same levels of performance; it may be in my head, but I doubt it. Takeaway food will typically be much higher in things like fat and salt, which will likely impact your performance. I also generally eat a lot more when I get a takeaway, partially because the food is there and I want to eat it, but also probably because of things like MSG being added to the food.

We may feel more hungry if we are changing our eating habits, but we accept that there are sacrifices to be made in the pursuit of a healthier lifestyle. If our own standard of eating was to order a pizza every night, changing to a salad will feel difficult for a while. We know that but consider it worth the payoff, if we are in pursuit of a healthier lifestyle. If we don’t consider it worth the payoff, we don’t stick to the diet. I’ve seen adverts on Youtube for people claiming to eat whatever they want and never doing any cardiovascular exercise, yet having Hurcules-esque bodies. It is usually promoting a brand new trend of the ‘make no changes, look amazing’ school of diet and exercise. I don’t buy it personally, but perhaps they truly do know more than me and I’m an idiot for eating well and exercising. I think they’re preying on this instinct that we have, though – to look good but eat what we want; to be both ‘healthy’ but not have to change any behaviours to get that way. Life doesn’t tend to work like that. We make certain sacrifices to gain benefits elsewhere. The more we dedicate ourselves to those sacrifices, the more they become behaviours that we stand by. I used to never enjoy eating salads when I was younger as they just seemed boring. These days, I love finding a nice salad recipe for a Saturday afternoon. I made a lentil salad a few days ago that was delicious, and since discovering za’atar, I’ve really enjoyed making salad dressings which use the herb mix.

Improving your mental state is far more difficult to measure, though, which may make it more difficult to justify. We may feel happier if we begin to practice yoga but it does not guarantee that we will feel vastly better all of the time; how much of the time is considered a success? And how do we know that we wouldn’t haven’t felt that happy anyway – is it easy to attribute feeling happier to the yoga specifically? What if it is that new cake diet you’ve embarked on?

The two things, physical and mental health, may also be at odds with each other. Your mental health may suffer if you are obsessing over the right foods to eat, and how anything outside of them will promote cancer in your body. The book states that a quarter of us will die of cancer – that leaves three quarters who won’t. Do those people avoid it because they never smoked a cigarette, ate a beef burger or had ten drinks with their friends? I highly doubt it. Were they all masters of zen, facing any adversity with a level head and a wise proverb to teach? I still doubt it. My grandad smoked most of his life, was a little overweight and, to my knowledge, never burnt a single calorie with the primary intention to exercise. Did he die of cancer? He did not. Did he make it to his late 70s? You bet he did. If I had asked him what ‘mindfulness’ meant, he’d have told me to get a dictionary and check. It wasn’t a concept he knew anything about. I remember he was a big fan of Star Trek. Perhaps that’s the secret.

My grandad seemed to be an extremely happy, positive and carefree individual, though. He didn’t need to work extensively on mindfulness to be content, or he was extremely successful in hiding it if he did. My brother in law Keiran is very similar in that respect. Keiran’s intentions in the world seem fairly simple – to make people laugh. I lived with him and my sister for three years when I first moved to London and he managed to be in that headspace 99% of the time. He’s very successful at it too and is one of the funniest people I know. If he fails to make someone laugh the first time, he’ll try again and again and again. Eventually, he gets somewhere. The other 1% of his headspace seemed to be dedicated to shouting at Fifa, a computer game that has the capacity to turn the nicest human into a bitter, angry individual. It can make you feel like the world is plotting against you, and there is nothing you can do about it but sit there and watch. No one is perfect.

My point is this: some people never have issues with their mental health, some people may have but never identify or understand it and some people are in a constant war with it. Individuals arent restricted to these categories and probably float between them depending on what is going on in their lives, and it can probably vary depending on the particular issue at hand. It is more of a scale than a restrictive list of categories. I feel like I am good at reflecting on why I behaved a certain way, but not so good at identifying it at the time. As a result, I can respond to something quite irrationally, only identifying that I had done so after the fact when it is sitting on my mind, bothering me. Over the years I have been much better at not doing this as I’ve matured and learnt more about myself, and the world around me, but it still happens from time to time.

Diet affects everyone in some way, whereas improving ones mental health may be less applicable depending on the individual. I know that the same case can be made for diet too, with some people having better metabolisms etc, but I still believe the intangible nature of mental health makes it far more difficult to define and measure improvements in, making it more difficult to convince every individual that it is helpful. Someone can be skinny whilst eating pizza every night, but it doesn’t mean that they are actually healthy. They probably have high blood pressure and a heart which is crying out for a more complex range of nutrients.

It is especially true in the face of a cancer diagnosis. Everyone accepts that in the face of such news, especially where the diagnosis is more damning, an individual will experience a range of volatile emotions. The emotions will come and go, and we expect them to last for months, even years in some cases. People may never get over them until the day they die. That makes it permissible for an individual’s mental health to deteriorate during this period. Of course, some breakdown of mental stability is sometimes necessary. I’ve cried uncontrollably at times, I’ve woke up scared and not remembered why, and I’ve felt incredibly angry at perceived injustices I’ve experienced; my employer not making it easy for me to return to work, or the original diagnosis at the hospital not being specific enough and carrying a lot of negative energy. It can be necessary to feel these things to help you process them. That is how I reflect on them, and it provides them with a lesson that you can apply in the future. You hope that next time, that lesson will stop you going to those same places mentally. When I speak to people about these things, they tell me that I’m right to feel that way. Sometimes, though, they remind me that there are much bigger things at play here and that keeping myself in a positive mindset is essential. I’ve felt the power of it and it has certainly changed me as a person.

Feeling scared, sad and angry over a period of time really takes its toll on you. In my experience, it makes me far more irrational, seeking narratives which support those negative feelings and using them to intensify the emotions even further. You get locked in that mindset and it keeps you prisoner. It has never benefitted me more to respond to events in this volatile manner. I can’t converse with my family in a positive way, I don’t allow myself to enjoy the things in my life that are special and I find myself moping about, not actually trying to sort out the issues which have made me feel that way in the first place.

I’m not sure what the science is behind it yet and I hope the relevant chapters in the book will shed some light on it, but I can see how allowing yourself to remain in this state could promote the growth of cancer cells in the body. The feelings are debilitating – they can actually stop you from getting out of bed in the morning. If that is how they manifest physically in your behaviours, why wouldn’t they do something similar to the processes going on within your body? If our bodies are constantly creating ‘bad’ cells, as I read in the introduction of the book, but also has processes for dealing with them and stopping them from getting out of control, why wouldn’t those processes also be affected by these intensely negative emotions? All of it makes logical sense to me. I’ve experienced the difference in mindset between a good day and bad day of dealing with cancer; I’ll take the good days every time if I have a choice, and I do have a choice.

Nurturing behaviours that promote both physical and mental wellbeing are essential to me. My key techniques for keeping myself physically well are very similar to the mental ones really. Physical exercise, such as running and yoga, help improve both my physical and mental health. When I am in the zone with exercise, I feel a state of both intense contemplation, yet complete calm. It’s strange. I feel like my brain is ordering and dealing with things that are bothering me, but I can rarely recall any of it specifically afterwards. It is especially true of running. During yoga, I try to bat away thoughts and focus on the position and how it feels, which offers a different wealth of benefits.

Eating well is another technique for improving both my mental and physical health. The physical benefits are quite obvious and I spoke about them earlier, but the mental ones are more abstract. Eating well can make you feel better for the plain fact that you know you’re doing something that is good for you. The process of cooking is also great for me mentally. Sometimes during chemotherapy, cooking an evening meal was the only thing that got me out of bed or off the sofa. I found the energy to do it despite not finding the energy to do anything else all day. It is such a satisfying process, creating something from scratch that you then get to consume. Even when it is not the healthiest dish, you still feel a level of satisfaction that you do not get if you did not make it yourself. It is yours, and you can give it to the people around you that you love.

Finally, I want to talk a bit about the first two chapters, and why it was difficult for me to get through. The author discusses how he discovered he had a brain tumour. He was running a laboratory on functional brain imaging with his good friend and colleague, Jonathan Cohen. They had access to a new type of MRI scanner which was far more accurate than the ones widely available in hospitals at the time, which allowed them to create studies to investigate the prefrontal cortex of the brain. He states that this is a particularly difficult part of the brain to observe, so little research had been done up to this point. With access to this new type of MRI scanner and a devised technique for getting this part of the brain to show up on the scans, they had the perfect formula to start their research. Subjects would come into the lab and be put into the MRI scanner to be observed. Firstly, a scan would be taken of their brain before undergoing the task, then the subject would complete the task whilst another scan was taken. The task required them to use the prefrontal cortex as it required them to remember something and answer a question based on it, a feature which requires the use of this part of the brain.

One day, a subject didn’t show up. David was the least technical out of the people running the scans – he had come up with the method for testing subjects, but did not specialise in operating the equipment. They suggested that they scan him so the time slot is not wasted. After doing the initial brain scan, they told him that something was wrong with the equipment. They did another test, before entering the room and breaking the news to him… The equipment wasn’t broken, there was something the size of a walnut on his brain. They sent the scans over to the relevant department for investigation but David states that he knew what it meant. He had seen plenty of brain scans and could recognise when there was something abnormal going on. This was certainly abnormal. He speaks about going home that night and laying next to his girlfriend whilst she slept, smoking a cigarette and staring at the ceiling, thinking about how he was going to die at 31. I had to stop reading and take a minute to compose myself.

I’d been in that exact place. Reading it was so strange. When you read things, you experience them in a very different way to other mediums, such as film. That person’s thoughts are temporarily placed in your brain, with you still present but temporarily allowing yourself to experience the world through their thoughts. You get a feel for what they are like, what drives them and how they respond to things. A narrative is created in your head and that character sits there throughout the book. I had hardly read any of this book, and here was a man describing a situation and mindset that I had experienced. Not only had I experienced it, but it was the lowest point of my life. Laying in the hospital bed the night of my diagnosis, I stared at the ceiling whilst Anna slept beside me. All I could think was ‘how has this happened? I’m 28; I keep myself healthy. What have I done to deserve this?’ I was incredibly scared. David’s girlfriend is also called Anna which made it feel even closer to home. It was eerie.

After taking a few minutes, I continued to read. The next part really shocked me. I’ve taken a cut of it below, not wanting to paraphrase or misinterpret his words.

“Just as I was repeating, ‘It can’t be happening to me; it’s impossible,’ the other voice said, ‘You know what, David? It’s perfectly possible, and it’s all OK.’ Something happened then that was both astonishing and incomprehensible. From that second onwards I was no longer paralyzed. It was obvious; yes, it was possible. It was part of the human experience. Many others had experienced it before me and I wasn’t special. There was nothing wrong with being simply, completely human.” – Dr David Servan-Schreiber, Anticancer, Page 21

Sometimes you read something so apt that you are certain that you’ve thought it before. It is a sort of deja vu but for thoughts. It perfectly summarises the power your mind has over your emotions, and how they can define your response to a situation. David turned over those thoughts of fear and anguish in a few minutes using nothing but his own brain – a particularly powerful brain, of course. It demonstrates the power of mental wellbeing and how it can define how you deal (or do not deal) with a situation.

He says himself that the techniques in the book will not create miracles and that people should adopt the parts of it which work for them. I’m interested to see which parts really resonate with me, and to challenge myself to take more accountability in my fight against cancer. Up to now, I have mostly accepted that the oncology team provides the techniques and acumen to beat this cancer. Ultimately, they will always hold the keys to getting cured, especially where surgery is a requirement, such as with my cancer and diagnosis.

The author is not claiming that making these changes will miraculously get rid of your cancer, or replace the role that chemotherapy, radiotherapy, and other medical techniques hold in the process. The changes may provide that little edge that you need, though. Whether that edge helps get you another week, month, year, or all the way to being cured, it’s worth using them and seeing (in my opinion). Feeling in control of your life is difficult when dealing with cancer; even if these techniques only give you a new means of feeling in control of the situation, I think that is a strong argument that they have value. It is like every behaviour in life – so long as they do not dominate, delude and control your thinking, they can be used at your discretion where you find them useful.

An Unexpected Hiatus

28th February 2022 godley93Blog, Cancer, Chemotherapy, Mental Health, Scan, Treatment12 Comments

As an avid reader of this blog (which I am sure you are), you have probably noticed that I took a hiatus last week. It happened unexpectedly for me, too, so don’t feel cheated. I say ‘unexpectedly’ because I did not plan on having a few days off writing. Quite the opposite, actually. There were 2 posts that I had been working on, and I really liked both ideas. In fact, one of these posts is almost finished. Unfortunately, it panned out to be a bad cycle and a bad week for the world generally.

The ulcers were back in full force. They were actually back in a way that they hadn’t been before, and for an unprecedented amount of time. It all began around Tuesday, but they did not get particularly awful until around Thursday. I have had yellow sores running along the underside of my tongue like a train track. When Anna shined a light in my mouth, we also noticed sores on the top of my mouth. Ulcers were dotted all the way to the back of my tongue like landmines, and nothing seemed to persuade them to leave. I have been in a routine of washing my mouth out with saltwater, followed by the hospital issued Difflam mouthwash and finally, Anna would dry the ulcers with toilet paper and apply Iglu to them. Iglu is a gel that forms a protective layer over the ulcers – much more effective than the Bonjela I had been using. “Bonjela just slides straight off the ulcers. I wouldn’t waste your money,” said the pharmacist when I went to beg her for a miracle remedy on Friday morning. I was always suspicious of Bonjela. Every time I applied it, my finger seemed to leave my mouth with most of the gel still on it, and the little bit that left I would witness disappear as quickly as I applied it. I assumed that the split second it made contact with the ulcer was enough, but apparently not. You will no longer be receiving my custom, Bonjela. Buck your ideas up, sucker.

The past week has been tough for a lot of people all over the world. Suddenly, the prospect of war in Europe turned from a tiresome storyline repeated too often in video games to a reality. It was the way that I learnt of the news which bothered me so much. On Thursday, I woke up at 4am with incredible amounts of pain in my abdomen. I reached out for my water bottle and took a sip before digging for some painkillers in my bedside drawer. Once I had taken them, I knew that I would not get back to sleep if I tried right away, so I grabbed my phone. ‘Russia declares war on Ukraine’ read the latest notification as the screen lit up in front of my eyes.

For a few hours, I sat on my phone, looking for more information on the situation and trying to understand how concerning it was. We have learnt since that it is very concerning. That first day I sat reading the news all day, constantly refreshing the BBC news page and reading every new piece of information. This type of behaviour is very uncharacteristic of me. I actually make it my mission in life to avoid the news as much as possible. I do not want to be ignorant of world events, so I leave notifications of a few news outlets on. This means that I see headlines and can dive in where something seems interesting, but it mostly allows me to be aware of things going on without bogging myself down in the details. It is like walking a tightrope of not wanting to be totally ignorant of the world but not making it my obsession to worry about everything. I also try not to buy into the press’s sensationalisation of every bad event, which is what it feels like the news is more about these days. Unfortunately, this particular story was very hard to look away from.

It doesn’t take a clairvoyant to guess how my mood was for the rest of Thursday. The mind is powerful, working both for and against us in so many ways. My mind was solidly against me from then on and for the next few days. How this then impacted me physically was quite shocking, even to me. I really struggled to get out of bed for the rest of the day. I kept trying my normal techniques: find a recipe that excites me, look at the fundraiser for the Run 40 campaign, think about a blog post I wanted to write. Nothing worked. All I wanted to do was sit and worry about the end of the world. I watched videos of people in Ukraine panicking with their families and trying to think how on earth I’d react. I read stories of brave men pledging to resist against any amount of force thrown at them. I use the word ‘brave’ here, which I don’t use lightly. Any time I am told that I am brave for how I am coping with my diagnosis, I feel like an imposter. My situation was forced upon me entirely; these people are showing far more bravery than I could ever hope to muster. The whole thing paralysed me, as I am sure it did many others. I cannot even begin to imagine how it feels for the people of Ukraine or those in Russia who watch as their leader makes casual threats of nuclear war. The Russian public can’t even protest in fear of being arrested, or worse. It is a horrific situation.

Between my obsessive refreshing of the BBC updates page regarding the war, and the ulcers making everything incredibly painful, I just collapsed under the weight of it all. I’ve hardly cooked, I haven’t baked, I’ve been sleeping far more, and getting the energy to do anything has felt difficult. It wasn’t helped by the ulcers, which got so bad I could not allow my tongue to rest in its natural place because it was pushing the ones at the back against my teeth, making them bleed. Then there was the stress of knowing that the big week was finally coming – the first progress scan and results.

I arrived at The Christie hospital this morning at about 8:15 for my scan. The appointment was at 8:30. I made my way to department 11 – a place in the hospital I hadn’t been to before. Exciting. Turns out it is pretty much like the rest of the hospital; a waiting room with a reception for you to sign in, then a corridor off to the functional rooms. I registered with the receptionist and sat down. About 6 others were waiting. BBC News was blaring from the TV talking about war, death, refugees. Even the hospital isn’t safe – I thought they’d make it a haven away from real-world events. Don’t people have enough to deal with here? As I looked around, trying to distract myself from the doom-speak, I noticed that everyone in the room had the same brand plastic bottle they were drinking something from. I felt left out and wondered if they were all from the same contractor services, waiting to do some form of work there. They didn’t look like they were affiliated with each other, though. It puzzled me. One woman also had a small plastic cup of milk. Her hand was quivering as she lifted it to her mouth; I wondered how much lay on this scan for her. Just at that moment, my name was called out by a man in a white coat.

Of course, the bottles contained a solution that we had to drink for the scan. I know that should have been easy to guess, but I have had about 3 of these scans since falling ill and have never had to do this. Inwardly, I felt very stupid even considering that this wasn’t a standard procedure for the scan. Why would a group of clear strangers, all sitting apart and ranging in age from mid-30s to approximately 70 years old, be affiliated with each other just because they are drinking from the same branded sports bottle. What an idiot. The scan went fine, anyway. I didn’t expect anything else. Thursday is the big day when I receive the results. Saturday is then the next chemotherapy cycle, and also my birthday. I can’t say I’m excited for the week ahead, but I’m trying to be.

It is going to be a strange week, that’s for sure. The idea that the best possible news I could receive is confirmation that I will be getting a major operation is, in itself, intimidating. I haven’t fully considered what the worst-case scenario could be. I’m not sure I even know what the worst-case scenario could be. Cancer blindsides you like that – you think you understand something, and then you learn that your understanding was wrong. Even I say that and my oncologist told me that I was the “best informed patient she had ever met” after asking me what I knew about the situation with my tumour in our first meeting. I felt rather flattered. Maybe she says that to all the patients. I hope not.

I’m hoping to kick back into shape this week. Back to the baking, blogging and running. Even a little bit of birthdaying (once the chemotherapy treatment is over). I’ll do a full chemotherapy diaries post and delve into the full details of the last week there. I wanted to write a little bit about why I had been quiet and give an update on the scan today, as many people have messaged me about it! I’m also going to write a proper post about the Run 40 campaign, which is finishing today. I really wanted to get another run it before it was over but I just wasn’t up to it today, unfortunately.

Half Way Blues

7th February 20229th February 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Lifestyle, Mental Health, Pancreatic Cancer10 Comments

The Chemotherapy Diaries

On Saturday, I had session 6 of the Folfirinox chemotherapy, marking halfway through the planned 12 sessions. I previously mentioned that I was looking forward to the progress scan on February 28th as it will illuminate the situation with the tumour, whether good, bad or somewhere in between. In true fashion of the blog’s name, I am feeling the full effects of the ebb and flow of life today, and over the past few days. Unfortunately, I don’t share the optimism of my past self currently. I am going through another mental low. I’ve been trying to do things to pick myself up a bit, such as putting together plans for the wedding and looking at all of the incredible donations on the Just Giving page for the Run 40 campaign, which cheer me up. There is still a mental lull that I am struggling to kick, though.

The problem with having a good cycle, like cycle 5, is that you can find yourself slipping into complacency with the situation. That is my experience anyway. Not just the situation with the chemotherapy itself, but the overall situation with the cancer. I spent the last 2 weeks feeling like a bit of a world-beater. The running was going well, the cycle was quite refreshing in terms of how good I felt and it seemed like everything was moving in a positive direction. Things are still very positive from the perspective of most of these things. Even this chemotherapy cycle hasn’t left me feeling really terrible, though it does all seem somewhat relative. I always compare it to the very worst I have ever felt during a cycle so until I hit that point, I tend to feel somewhat optimistic. I think I underestimated the impact that hitting the halfway mark might have on me, especially as the original plan was to only do 6 sessions and then review. Or that was how I understood it, but I may have misunderstood; it isn’t uncommon for there to be a miscommunication between us muggles and medical professionals.

Treatment day was a tough one. Not the toughest, but it was up there. During bag number 2 (my mortal enemy in this struggle), I just felt awful. My body felt really worked up, nausea kicked in badly, and I couldn’t get comfortable. It isn’t a nice feeling when you can’t seem to settle in your own skin, and it felt like it set the tone for the rest of the weekend. I’ve been feeling sick, my body feels really worked up, and I am very fatigued. It took the help of some anti-sickness tablets yesterday to feel somewhat better, and I was involuntarily falling asleep again from the fatigue. I did have a particularly delightful nurse during treatment. She was really chatty, and we had good fun. She definitely made it more manageable whilst I was at the hospital. The nurses seemed to like the cookies too. My nurse particularly liked the pictures I showed her of my new apron and oven mitts, bought for me by the pancreatic-cancer beater Nigel, his lovely wife and his wonderful daughter Julie.

I managed to get out of the house on a short walk yesterday and went for Sunday dinner at a local restaurant 100 meters down the road, but that was all I managed. 2 of Anna’s good friends were visiting so I’m glad I managed to get out and be somewhat social with them. Becky and Danikka enjoyed puppy Lucy’s company too.

My friend Andy has sent me a few online writing competitions that I have entered. For one of them I submitted my World Cancer Day article without any edits. I wonder if that may be a disadvantage as it was submitted as a standalone essay, which it probably doesn’t work as, as it has a few references to the blog and other things. I figured if they liked the writing though, they’d get back to me and show an interest. Another one was a brief for a short story. I hadn’t written a short story before so it was quite fun, and kept me busy for some time during the chemotherapy appointment on Saturday. If it does not get chosen to be published, I will post it on here so you can (hopefully) enjoy it. The brief only wanted a 206-word story, so it is very short, but it provided an exciting challenge. It is fun to write something purely for creative purposes too, although the genre was ‘horror’ and I haven’t read a horror novel in my entire life. I was fairly happy with the finished piece though, I just tried not to think about it too much and ran with an idea. More on this later!

The other thing is that the Run 40 Campaign and fundraising has really blown me away. I cannot believe where it is at now, with over £4,300 in donations. It is truly astonishing, and reading the lovely comments is so heart-warming, fulfilling and just downright incredible. I feel so lucky that so many people in the world clearly connect with the struggle, whether for personal reasons of being affected by pancreatic cancer in some way or just connecting with the writing. Pancreatic Cancer UK also posted about me on Facebook and Instagram, and the reaction was totally mindblowing. I don’t have accounts on either of those sites so I couldn’t write anything in response, but some of my friends commented linking to the blog and the fundraiser. Hopefully a few people reading this have come over after reading those comments! I have also just received an email from Just Giving stating that I am in the top 1% of fundraisers in the past month – out of thousands of campaigns on their website! I just cannot thank everyone who has donated enough – it has been the only thing that has brought me to tears in the last few weeks; not even the cancer has managed it lately! Hopefully, I’ll be keeping that trend up despite feeling pretty volatile currently. It is also nice to find myself in the top 1% of something, after writing a whole article on wanting to be in the 1% of pancreatic survivors still alive 10 years after diagnosis. Proof that I really can get into the top 1% of something – yay!

The Email from Just Giving – Top 1% of Campaigns Last Month!

So, I really do recognise that there are so many positive things going on and lots to feel grateful for. It is just another period where the situation with the cancer is weighing heavy on my mind. I had a fortified confidence last week that I can beat this cancer, and I still share that optimism to an extent. It is hard to make yourself truly believe something when your head isn’t in that place though, and I don’t truly believe it this week, unfortunately. Perhaps after a few more days, I will manage to get out and be more active, and this will bring my head back into a better place. How the physical symptoms pan out from treatment will also play a part in that of course. It is the kind of week where I am side-eyeing the Diazepam and fighting the urge to try it. I know that it isn’t an answer though; sedating yourself to get through the day is not ideal or a sustainable solution. It feels like an easy way of escapism occasionally may be granted in the situation, though. Or that is how I am justifying those thoughts.

I also was sent an article this morning about a new breakthrough in Pancreatic Cancer treatment that is due to come through over the next 5 years. Despite it having an overall positive message for those with pancreatic cancer, there were a few things in it that are now playing on my mind. It states that the outer shell of pancreatic cancer tumours are very thick, which is why they are difficult to tackle with things like chemotherapy. This new treatment manages to break holes through this shell, making treatment more effective. I haven’t cross-referenced the things in this article with any other news sources, and it is a Daily Mail article that I don’t usually read, but I don’t have many reasons to doubt any of the information. It perpetuates a feeling that it is just too far away for me to receive any benefit from it unless I am on the first human trials in the next few years, which isn’t impossible. I just always try and think back to Nigel’s amazing story, and how successful his chemotherapy was in treating his tumour. Let’s hope I’m still around to speak of a similar story in a few years.

We have to treat this with caution at this point as the study was done in mice. Once human trials have been conducted, only then will we know if this is such a big breakthrough for #pancreaticancer (but here's hoping 🤞) https://t.co/aJz1V3uF9m
— Ali Stunt 💜🇺🇦 (@AliStunt) February 7, 2022

Ali Stunt, CEO of Pancreatic Cancer Action, Tweeted This About the New Treatment

Anyway, I am currently waiting for the district nurse to come over and take out the line that I have to wear for 48 hours after my treatment day. It contains the final chemotherapy drug. Once that is out, I can finally shower and that will cheer me up a bit. Then I’ll hopefully feel more comfortable getting out walking. I want to try and get my first run of the week in on Wednesday but that is depending on how well the treatment goes. In the last cycle I managed a 5K on Wednesday in week 1 but then spent the rest of the day falling asleep, totally exhausted, so it perhaps wasn’t ideal.

The song that we’re signing off the post with today is one of my favourite discoveries from the Positivity Playlist, a playlist I made when I was first diagnosed to help get me through the negative thoughts. It epitomises the vibe that I wanted from the playlist the most. Good job to Sophie Bolland who added it – solid, solid work. She is also the chief bridesmaid for our wedding, and it is her 30th birthday the day after the event. We’ve said that at midnight it ceases to be our wedding day, and everyone present and everything that is going on is for her 30th birthday from that point. Anna and I are selfless like that. Love ya, Sophie!

The Road to Diagnosis: Part 4

26th December 202110th January 2022 godley93Cancer, Health, Journey, Lifestyle, Mental Health, Pancreatic, The Road to7 Comments

Despite all the advice to not panic, I was experiencing panic in abundance. How else would you expect someone to respond to this situation? The specialist had told me that she finished at 18:00 but should be around until 19:00. If I missed her, I would be spending the night alone in a hospital bed, bouncing around the worst-case scenarios in my mind, just as I was now. Your head can be a dangerous echo chamber, especially when the word resonating around it is ‘cancer’. My mind was racing, my body was shaking, and I felt terrified. We quickly got in Josie’s car and set off. The sat nav said that we would get there just past 18:00, but it wasn’t pre-empting the increased volume of traffic as we got closer to rush hour.

Josie was infallible. She was razor-focused on the road. The car was silent apart from the occasional doom-speak coming from my mouth, “What if it’s incurable?” I wasn’t making it easy for my mum and Josie to stay composed, but both were mostly managing it. I was frantically texting away on my phone, speaking to Anna, friends, anyone who would listen. Time was racing yet standing still. I couldn’t give my mind a second’s rest. It was hell.

The only respite to the tense atmosphere came about an hour away from London. “Do we have time to stop at a service station? I really need to wee,” I’d been holding it in for an hour but had other things on my mind. Now it was becoming unbearable. “I’m not sure. Can you go in a bottle?” Josie responded, originally only half-serious. “I’ll just hold it,” I responded after looking around me and seeing no plastic bottles.

Now, I’m not proud of any of the next bit of this story, please remember that. In 2019 I had purchased every member of my family a Chilly’s water bottle for Christmas. If you don’t know what a Chilly’s bottle is, it is a lovely brand of reusable and refillable water bottles. They have interesting designs, and I had tried to get each member of my family a design that spoke to a part of their personality or interests. I had also purchased myself one, and I had it with me that day…

After requesting that my sister turn the music up to a much louder volume, and asking them both to avoid looking behind them, I started the undignified action of weeing into a premium quality reusable water bottle whilst sitting in the back of my sister’s car, with both my sister and mum in the front seat. It isn’t my proudest moment, but it did make us all laugh. The panic set in when I realised it was nearly overflowing and I wasn’t quite finished. So, I had to force myself to stop weeing (not an easy thing to do), before pondering what to do with it. Well, it doesn’t take a genius to work out what the conclusion was. I wound the window down, looked out the rear window to make sure there was some distance between us and the car behind, and braced myself as I threw the liquid out… on the motorway…whilst travelling at 70mph. There aren’t words in the English language to adequately describe watching your own urine splat on the outside of a car before breaking out into the air behind the vehicle. The indignation is amplified when you know that your own mum and sister are also witnessing it. I went through the whole process again before closing the window and sinking into my seat. We all laughed about it, and to an extent, we forgot about what was going on for a few minutes. I haven’t used the bottle since and somehow managed to lose the lid in the process.

As we got closer to London at about 17:00, we saw the ETA creeping up on the sat nav. My mum and I decided to get dropped off at Ealing Broadway station and take the underground into Victoria, then take a train to Denmark Hill where the hospital is located. We hardly spoke as we sat on the tube. In between being plagued with my own thoughts, I listened to the conversations around me. A woman was chit-chatting to her boyfriend. She was annoyed at her friend for bailing on a night out. As I listened, I tried to empathise with her, but I couldn’t summon an ounce of pity. I longed to hear someone say something real and of substance. I wanted to hear someone talk of real pain, loss, suffering. Why did your friend not join you? Maybe she was going through something? Did you take the time to talk to her about what was going on in her life? I felt mad at her for having such fickle problems, for being so self-centric as she continued to complain. Every sentence was about her, never her friend. Maybe I was moving into my ‘anger’ phase I thought; the denial would surely come after the diagnosis.

We made the train at Victoria with a few seconds to spare, but we had been forced to run. It was busy but we managed to sit down. My mum held my hand, but I didn’t notice. Both of my eyes were focused in front of me. The world was happening around me, but I didn’t feel like I was taking part. How many times have I sat on a train with my headphones in and phone in my hand, not knowing that the stranger next to me was travelling to receive a life-threatening diagnosis? I was shaking. The 15-minute journey dragged, and the city looked grey out of the window. Nearly there.

Anna was waiting for us outside of the hospital building. We walked up to the bed’s ward and went to the reception. They took us into a private room with a bed and a separate bathroom. We were told the specialists would be along shortly. I sat on the bed with my mum and Anna beside me. We waited.

A few minutes later there was a knock at the door. It was my representative from the multi-disciplinary group who spoke to me on the phone with a surgeon I had not met. The head of the multi-disciplinary group who was supposed to be there had to fly back to India at very short notice as his dad had been rushed into hospital. This surgeon looked relatively young, perhaps late 30s, early 40s. I wondered how much he knew about the case.

“Tell me what you know,” he said to me. I wasn’t in the mood to do this. I gave a very quick summary of the cyst, the SPPT tumour and how I knew he was about to tell me that some of those details were wrong.

“It’s bad news I’m afraid…” He paused dramatically. I wondered if he had learnt to deliver bad news from television dramas, or if the dramas were just accurate representations of real life. I heard Anna and my mum immediately burst out crying. My hands both raised to the back of my head. I was holding the surgeon’s gaze. He had a solemn, serious look on his face. I wondered if the sternness was a part of his personality or another tactic to communicate the seriousness of the diagnosis.

“Am I dying?” I immediately asked, not understanding why he thought this was an appropriate way to deliver news. I wanted detail but all I was getting was dramatic silence.

“You have pancreatic cancer. It’s an aggressive form of cancer. We need to get you into chemotherapy straight away, but we can’t whilst you’re jaundiced. The priority is to install a stent in your bile duct to correct the jaundice, then get you onto treatment. The hope is that the chemotherapy takes, then we will need to perform surgery to remove the tumour.” He delivered the words like a death sentence. There was no emphasis on the fact that the cancer hadn’t spread or that I was very young for this cancer so could have a much higher dosage of chemotherapy than the average pancreatic patient. I had to find these facts out later, once I was referred to The Christie for treatment. For now, they bowed their heads and left the room. Anna and my mum were distraught and grieving. I sat feeling numb. “I knew it was bad,” I said. I was smiling by now. It felt vindicating to hear the news after the hellish journey and emotional turmoil of the day. The verdict I quickly drew was that this was likely to kill me, and that I needed to find peace in that fact. I turned to Anna: “Let’s get married. I haven’t got a ring yet, but I’ve been looking. I don’t want to waste any time, let’s just make it happen.” It was very presumptuous of me, and she burst out crying again. We all hugged, including my mum. I took it as a yes.

The procedure to install the stent was planned for the next afternoon. I was to spend a minimum of 3 days in hospital as general anaesthetic was being used, so I had to be monitored the evening before and the evening of the procedure. It was another endoscopy, but I was being put under general anaesthetic. To my relief, the head nurse recognised that the situation was particularly volatile and told Anna that she could stay in the hospital with me to provide emotional support. My mum left to spend the night with my sister Josie in West London.

There were a few reasons that I slept very little that night. A nurse was required to come in and check my vitals what felt like every hour, but it may have been less in reality. This didn’t bother me though. I liked it whenever I got the chance to interact with someone external to the situation. I could pretend that nothing had changed in my life, make jokes, build rapport, laugh. Then they left, and it was back to contemplating my life. Anna was sleeping. I listened to music, spoke to friends who lived in the states and were still awake, and watched some YouTube videos. Predominantly though, my mind was focused on the diagnosis.

“Everyone dies. I’m just more aware of what will probably kill me now than I was a few hours ago, and that’s fine. There are worse ways to go. I have my family and friends around me. I have my fiancé. Life is good.” It was beyond doubt in my mind. I was dying, and I could either accept that fact or let it overwhelm me and kill me quicker. The latter wasn’t an option. “I’m going to go out enjoying every second of it.” It almost felt peaceful in the breakthrough moments. In others it brought me tears; I grabbed my jumper and cried into it, trying to muffle the noises so as not to wake Anna. I skipped between feeling elated, to wanting to scream until my throat bled.

At most I got an hour’s sleep, and that was mainly in small 10-minute intervals. My mind was haunting me. Strange things were happening in my sleep. One time I nodded off and, in my dream, I was in the hospital bed, but the door to the room was slightly open. Outside I saw a black thick substance all over the floor. It was slowly moving into the room. I suddenly woke up and felt awful. The whole thing was so ominous. It had been 15 minutes since I last looked at the time.

We spent the morning together in bed. I think we watched a bit of TV on the laptop, but we didn’t need to fill the time, it seemed to just pass. Eventually someone came to collect me for my procedure. I had to get into a wheelchair, and I was attached to a drip. It was the first time I really felt like a cancer patient.

I found myself in the same endoscopy preparation room as the first time, apart from this time, I knew I was going to be under general anaesthetic, so I felt rather smug about the whole affair. The doctor appreciated my gloating about it being my second endoscopy in 6 days – “That is good going. How was the first one?” he innocently asked. “I’m glad to be under general anaesthetic this time, put it that way,” I responded. He laughed; I wasn’t joking.

The procedure was needed as my bile duct was blocked due to the size of the cyst on my pancreas, not because of the tumour. The stent is a thin hollow tube that they insert into the duct, stopping it from being contracted and allowing liquids to run through it again. “It is a standard procedure,” I was told every time it was brought up.

Eventually I was taken into the procedure room, and my memory fades shortly after that. The nurse asked me my weight so they could issue the correct volume of drugs. I knew my weight had dropped a lot as I hadn’t been eating properly for weeks, but I wasn’t sure by how much. “73kg I think, but I’m not sure,” I responded. The doctor started speaking to me about the best oncology hospitals in the country for pancreatic treatment, but somewhere around here the general anaesthetic was issued, and I was out.

When I woke, I felt out of it. I was trying to sit up but struggling to support my weight. The nurses ran over to me and told me to relax. “There’s a lot of pain in my abdomen,” I told them. They immediately started issuing morphine every 6 minutes. I’d heard a lot about morphine, mostly positive. That was a different experience to mine. It may have been the lack of sleep, or the combination of it with all the other painkillers I was already on, or perhaps both, but I sat there feeling completely dissociated from the world around me. After about an hour and a half it was only me left in the observation room in terms of patients, but there were 4 nurses idling around waiting for me to be cleared to go back to my room. I got speaking to one of the nurses about her son, and she was showing me pictures on her phone. “I guess I might never have kids now.” The words dropped out of my mouth without me realising the weight of what I had said. She apologised to me and seemed ashamed of herself. I didn’t realise at the time. I wish I could apologise to her now. My mind was vacant and the words were more an observation than a realisation.

Eventually I was cleared for release once the pain had died down, and I was taken back to my room.

They discharged me from the hospital at about 16:00 the next day. They checked my weight as part of the discharge process and it was 66kg, far under the 73kg I had told the nurse. It must have contributed to how bad I had felt after the procedure. Anna’s best friend Sophie picked us up to take us home. She had also driven over a load of belongings from our house the day that I had rushed into hospital and went to the shop to buy the most complete bag of snacks I have ever seen. We pictured her running down the aisles of Tesco with her hand out, slapping one of every snack in stock into her basket. She’s helped us out so many times during the journey with cancer and beyond. Sophie is another amazing person that we have around us, and she is always checking in and making us laugh. Eventually I will manage to pay homage to every person who has been significant to us, but it will take a lot of posts. You see people’s true colours shine in these extreme situations, and I’ve been extremely fortunate to find out that most of the people I know are incredibly thoughtful, empathetic and selfless individuals. They make fighting the cancer so much easier with their support.

Anna and I were looking at moving back to my parents in Cheshire. I didn’t want to undergo treatment at St Thomas’s as it was in central London right next to London Bridge, the last place I wanted to be regularly going for treatment during a pandemic. It would also save us a lot of money, and my financial situation was looking bad since my employer would only pay me in full for 1 month. I had already been off for 6 weeks. At King’s, I had raised the idea of the move with the specialist, and she had told me that she would write a referral for me. 2 days after leaving the hospital it had been confirmed that I would be going to The Christie in Manchester for treatment. It was a huge relief, and The Christie quickly got in touch with me to arrange the first meeting. It was time to start embarking on The Road to Recovery.

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The Road to Recovery

The Chemotherapy Diaries

The Chemotherapy Diaries