Physical and Mental Wellbeing in Fighting Cancer

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

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

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.

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

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.