Where do I start? Do I talk about the operation and how a team of people tirelessly slaved away, working on my body for 13 hours, making sure that none of the tumour could remain? I wasn’t there for the surgery, so I can’t talk much of that experience, only the fallout afterwards. Do I talk about the stories I gathered as I was taken from room to room, doctor to doctor, fighting infections and numbing the different types of pain that were coming and going? Or do I talk about none of it at all, choosing to look forwards in my life for the first time since last November? “You will go and live your life now,” my surgeon said to me. Were the painkillers numbing my positive emotions too? I can’t even be happy about it; it just doesn’t feel real. My cancer hasn’t necessarily gone – I have to wait for the histology results to find out what comes next. I’m likely going to be back to chemotherapy soon.
It was hard to even think on it all too much for a few days, and I just burst into tears in the middle of the ward when I did. How has this actually happened? There was no version of events in my head where I actually survived this thing. I thought that my role in the world was to be that insignificant statistic who insignificantly died at the hands of a statistically significant cancer. You don’t boil yourself down to a statistic. Neither will your friends and family. Extend out a few more branches in the tree and you are in territory where you are a statistic, another name on a page. It’s how humans process information. It’s how we understand how good or bad something is. It’s how we make arguments about pancreatic cancer being one of the deadliest to have and how you have to be old to even be eligible for consideration. Yet, my surgeon sat and said to me in the most serious of ways, “We aren’t going to perform miracles, Dan. We can only do what we can with what is presented in front of us.” It seems that he has performed a miracle here, or has started the progression towards one.
So I haven’t been told I’m cured yet. Removing the entire pancreas is a good start, and I’ve only ever been told that I have cancer on my pancreas, so maybe it’s a really stupid thing to even suggest that I’m not. I’ve learnt not to assume anything with cancer, so I’m not going to assume anything. I’m almost certain there will be mop-up Chemotherapy, scans, and other bookmarks in the calendar that same carry a familiar type of anxiety. It sounds like the only objective is to get better for a good while though. Another surgeon who was looking after me for a while on the Sunday told me that the tumour would be cut apart the before performing some tests on it. That would help to indicate what the best next steps are in terms of treatment, as well as helping future research.
The headline really is that I don’t have a pancreas anymore. No more ripping on Dan Pan, Penny Pan Pan or Pan Can. This means that I am fully diabetic now and have been learning to interject insulin over the past few days. Alongside my pancreas being taken out, 3/5ths of my large bowel was also removed. Some major arteries were then reconstructed before I was finally put back together again.
I had a strange sensation on the Tuesday morning after the surgery. I’d been struggling to sleep and was overindulging in the pain relief button. It was about 4:30am. As I lay there; watching the nurses walk between their stations and the various beds, checking temperatures, replacing dressing and sitting on their computers reviewing data, I felt like I was in a game. They walked around with lights in their hands and shone them at exact spots for different reasons; because an alarm went off here, because they knew that they checked this this thing every 10 minutes. I started trying to learn their patterns and understand their movement, I was trying to figure out if I could fit in with them. Somewhere in the process, I alienated myself from them, and I sat there listening to the ‘moody’ playlist on Spotify and feeling lonely instead. My bed was in the corner and had a load of equipment next to it.
A few minutes later, the nurse surprise me and came over to get some equipment from the shelves next to me. I hadn’t predicted it. Damn it. “You do a lot for people you know,” I said to her as she filled up a box of various things from the drawers next to me. “We’re just here to take care of people, dear,” she replied with a smile. “It’s 4 o’clock. You need to sleep,” we were back to the games. I told her that I’d lost my headphones a few minutes prior after taking them out to talk to her. We found them together a few minutes later. It was a long night, why not waste a few minutes of her valuable time on my pointless games.
Stories are abundant in hospital, that’s for sure. My dad used to obsessively watch 24 Hours in A&E on tv here in England. It’s a show following the Accident and Emergency department of a hospital for 24 hours. It has everything that a compelling story might have – twists, tribulations, trauma. They don’t need to seek the stories out, only place the cameras in the buildings and wait. They knew that the stories would come from there. We haven’t been watching it so much these last few months. It isn’t so fun when your family is currently suffering from an ailment which affects you, very much centred around hospitals. My dad probably still does, but not when I’m around.
I don’t have enough energy to really speak at length about everything right now. Eventually, I’ll talk more about hospital and all of the challenges that came with it. For now, I wanted to think you all for the messages of support, and let you know that I’m doing well. I’m getting stronger every day and can walk outside the hospital when my family visit. I’m going stir-crazy on the ward and am hopeful that they will discharge me tomorrow so I can continue my recovery at home with my amazing family, fiancée and Lucy dog. The hospital want my insulin levels to balance before taking this final step, and we seem to have achieved this over the weekend.
I’m trying to do my best to remain grateful, but there is a lot of change on the horizon. It’s all very intimidating. I know that being diabetic will just be another thing that I’ll grow accustom too, but combined with the future threat of cancer, recovery from surgery and lack of any pancreatic enzymes in my body at all, it feels daunting. The next few weeks will be an interesting journey through these facets of the illness.
This is also the 100th post on the blog! What a momentous post to coincidentally fall into this milestone! Here’s to plenty more Ebb and Flowing (preferably without all the cancer, but we’ll see).
The day that Anna has been dreading had arrived. Race Day. Sunday, May 22nd – Manchester. The stage was set for her first ever half marathon. Sleepless nights, despairing days. “I hate running,” she would say to herself as she laced up her running shoes for another practice run. Her only motivation to continue doing them was the knowledge that she was raising money for an amazing cause – The Christie, where I receive my cancer treatment. The primary source of solace for her comes in the form of a vow… a vow to never run again once she crosses that finish line. Half marathon achieved; Anna Running Corp dismantled. All aspirations achieved and no interest in drawing up any news ones within the confines of awful running, the worst activity known to man (according to Anna).
With a start time of 8:40, it was an early wakeup. The alarm wailed at 6:00. Anna was up straight away, but I was not so eager. Neither was Lucy. The two of us refused to rise to Anna’s ‘I want to be on time’ game. We performed a dirty protest… the sleeping kind, we aren’t animals. Well, Lucy is, but you get it. By the time we got out of bed, it was 6:30. We had all agreed to leave at 6:45 the evening before. Anna wasn’t impressed.
We left at around 7:00 in the end. The sat-nav kindly informed us that we would be getting there at 7:53. That meant that Anna had plenty of time to meet her partner-in-crime Sophie (who is also Maid of Honour at our wedding) and make their way to the start. Any tension was dispelled – things were going to work out. We decided to bring Lucy the puppy along to see the city. After establishing herself as a beach girl in Whitby, we knew we had a difficult task convincing her that city life is worthy of consideration. It is a mountain that we must climb with her, though, as Anna and I usually live in London in normal life. This cancer malarky led us to move back in with my parents, in the much-smaller town that I grew up in. Lucy was then purchased for me by my lovely family as a surprise gift to help support me through the awful journey. She is now 8 months old and very much likes having a garden to run around in and fields to go walking in. It’s a huge problem as we won’t have either of those things once we’re in London. Also, due to her tiny size, she’s a little scared of cars. There are a lot of cars in London. Lucy won’t approve of any of it if we don’t start trying to convince her now.
Warming Up Against a Bar Window – Totally Normal
We arrived at roughly the time the sat-nav told us we would. Anna jumped out of the car and went to meet Sophie. My mum, dad and I found a parking lot and didn’t question its credentials. There were white lines, other cars and a machine to pay – it seemed legitimate as they come. Unfortunately, it wasn’t legitimate. Or I am assuming it isn’t legitimate. My dad returned from the parking machine and informed us that it cost just over 25 of his well-earnt-British pounds to leave his car on this piece of land for half a day. Now, I wish I could say there is nothing remarkable about this car park which would make it cost such a price but there actually are plenty of things that are remarkable about it. Here are some of the things that the car park did NOT offer for that price, making it remarkable – A barrier, a surface free of crater-sized holes or EVEN CCTV cameras (other than the cameras making sure those who entered and left had paid). Perhaps the fact that Britain has the second most cameras per person in the world, losing the title only to China, makes those who run it think that they don’t need to bother buying their own (stats supplied by random people in the pub and not verified; also the ‘China’ part of that fact may be British government propaganda to make us look better). Or perhaps, the company that own and manage this car park are just a bunch of money-grabbing twats. They can’t even pay someone to clean up the excessive amount of broken glass which was strewn around the place like spilt glitter on a carpet. Remarkably rubbish, but we paid for it. The joke is most definitely on us.
To be fair to the car park company, one of these problems actually seems endemic in the entire city of Manchester – broken glass. I studied for my undergrad in Manchester and lived in the centre of the city in my final year. It has always been the nearest city to my parent’s house, so when I was younger it would be where we’d go to go shopping, see bands live, etc. What I’m getting at is that I’ve spent a lot of time there in my life. Perhaps my memory is getting worse, but I do not remember the city having this much of a problem with broken glass when I frequented its streets. It is EVERYWHERE. I’m wondering if the local council have started trying to charge households for recycling glass or something. There must be some incentive driving people into yeeting their every bottle on a public walkway as opposed to putting it in a bin. It doesn’t even have to be a recycling bin. In fact, you don’t even have to put it in a bin, just don’t actively smash it on a public walkway, turning it into a trap for any innocent dog, child or adult that happens to be strolling down the road, not realising it is punctuated by jagged fragments. As me and my parents made our way to the spectating spot that we had picked out on a map, I feared for Lucy’s paws as we navigated the walkway – more glass fragments than concrete, and decorated with half-eaten food and rubbish. Lucy was a huge fan of the half-eaten food and rubbish, and my mum had to wrestle a couple of chicken bones out of her mouth over the day. Occassionally she’d pick up a bit of a polystyrene case which was left on the floor and proudly run along like she’d won the lottery. Good job shes cute because she’s also absolutely disgusting.
Mum Offering a Supporting Hand – Just Before Mile 2
We saw Anna and Sophie twice at our little viewing point – once just before mile 2 and again around mile 7. They were running side-by-side and were smiling ear-to-ear both times. They were enjoying it, no matter what they claim to the contrary. Both were sporting The Christie shirts, and Sophie even had a temporary tattoo of their logo on her arm. I’m hoping she will consider making it permanent in future but I suspect she won’t. She isn’t that committed to the cause. Despite it being quite overcast as they ran, the weather was proving near-perfect for running, remaining largely warm but with a cool breeze. The two stuck together all the way until the end, and the next time we saw them was on the run into the finish, with approximately 200 meters left to go. We cheered at them as we saw them emerging around the corner, and could see the smiles on their faces widen as they spotted the finish line in front of them. Music was banging, people were cheering and the voice of a woman announcing finishers was ringing out. They had done it. We made our way through the busy crowd to meet them.
Sophie’s Boyfriend Scott and Their Dog Narla – Surprise Support From Below a Bridge
Anna’s aunt, uncle and cousin were also waiting at the finish. Maureen, Anna’s aunt, also received treatment at The Christie for cancer. It was really lovely to talk to her about what an amazing place it is. There’s so much benefit in talking to someone who has beaten cancer and who understands the difficulty of going through chemotherapy. I have an incredible amount of respect for anyone who has withstood all of the struggles that come with a cancer diagnosis. The fact that I know they must be a strong person to be able to do such a thing then allows me to feel good about what I am doing. In turn, it makes me acknowledge that maybe, just maybe, I must be quite a strong person too. I haven’t survived, but I’ve made it through twelve rounds of chemotherapy. There’s a lot more coming my way so I need to try and celebrate every win. Finishing twelve rounds of Folfirinox is a significant win, no matter what the results of the scan are on Thursday. Celebrate it.
Anna and Sophie got to celebrate a significant win today too – they finished their first (and last, so Anna claims) half marathon. They also get to celebrate raising money for an incredible cause. Anna in particular has two people close to her who sing the praises of The Christie, and for good reason. Raising over £1,500 for them is incredible. It was great to see so many other participants running for them too. The hospital truly deserves it for everything it does. I’m so grateful to Anna and Sophie for choosing to raise money for them.
13.1 Miles Later
Being around all that running got me riled up and desperate to run myself. I’ve not been getting out of the house much these past few days. My body has been fighting back against the infection(s) and I’ve felt incredibly tired. After spending the day walking around Manchester, watching large swathes of people pushing themselves physically, I decided to try and get out running again once I got home. It’s funny when you get motivated to do something in this way – you watch people do something and convince yourself it’ll be easy if you just get out and do it too. It rarely is.
Between the age of about 8 and 13, I used to skateboard. If you have been reading this blog for a while, you may have remembered that I used to play the guitar a lot too at this age… Yes, Avril Lavigne must have been inspired by me to write her hit song Sk8er Boi. You’re welcome, Avril. I was never very good at skateboarding, unlike guitar, but over time I managed to learn a few tricks. Enough to go out with my friends and have fun without totally embarrassing myself. Me and my friends used to sit and watch professional skate videos together, where professionals would do mind-bending things on a skateboard and make it look incredibly easy. That is what is so impressive about people who are that proficient at a skill – you can watch them do it and be fooled into thinking it is easy, but you don’t appreciate how many different things the individual is accounting for to manipulate something in such a way. Skateboarding is one of the best examples of this I can think of. We’d get ourselves amped up watching these people throw themselves down huge sets of stairs, doing tricks that I couldn’t even do when slowly rolling along on a pavement. You’d then go outside, feeling incredibly motivated and ready to do whatever it takes to land that damn trick. You step on your skateboard, give yourself a small push so you’re slowly rolling, pop the board and the same thing that always happens happened – you’d enthusiastically gesticulate with your legs in mid-air whilst the board spins a bit, falls, and your feet land clumsily back to the ground either side of the piece of wood. You remember that it just isn’t that easy.
I felt that familiar feeling as I set off running in the early-afternoon heat. Witnessing so many people running a half marathon gave me a false sense of my current abilities as a runner. I headed out thinking that I’m only doing 5 – it’ll be easy! I used to routinely run a lot further than this and wouldn’t struggle at all. Of course, the run was horrible and my body just wasn’t playing ball; I knew it within minutes of setting off. My heart rate was rocketing despite my lungs feeling fine. Your body just isn’t the same on chemotherapy, and the infections a few days prior probably weren’t helping.
Things aren’t normal for me at the minute from an exercise point of view; they may never be again, with me needing a major operation, more chemotherapy, and maybe other procedures that I don’t know about yet. Who knows what I’ll be like in the end. I’m used to loving going running and being quite good at it. I’m not used to having to walk several times whilst running 5K – I’m not used to having to walk at all when running. I am used to pushing myself, though, and despite feeling absolutely crap, I forced myself to keep going for an extra kilometre. It isn’t a lot, but it’s something. Hopefully I’ll be able to enter a half marathon and push myself like that again soon. Maybe even a marathon, but I’m sure that is a while away from where I am right now.
As I ran along a familiar country path next to an overgrown patch of land, I remembered my mum telling me that the only time she has seen a snake in this country was in this area. She said it was dead with some of its body poking out onto the path, I believe. Running along, I looked into the overgrown wilderness and wondered how many snakes may be in there. That overgrown mess is their entire world. Nothing else matters. Their life is hunting, resting and trying to find a mate. Repeat. Repeat. Repeat. They don’t care what is outside of this area – it is totally irrelevant to them. Every day is a fight for survival. One of those days they don’t come out on top of that fight, and they die. I wondered if I’d ever see one as I ran along. For a second I convinced myself that there was one ahead of me. As I approached, I realised it was just a stick. Shame, maybe next time.
The Overgrown Area Next to the Path
I thought about cancer and how arduous it all is. The long spells of treatment, the constant berating of statistics and the palpable uncertainty that hangs over everything in your life. I almost felt jealous of the snakes in their little wilderness. Then I wondered if we are in our own little wilderness and some higher power is looking over us, pitying how simple we are with our cancer, climate change and petty wars. Maybe they’re juggling much bigger priorities with much deadlier consequences. Suddenly I felt a bit better about the whole cancer thing. I’m still managing to run a bit, how bad can it be?
Anna and Sophie are still taking donations. If you would like to donate, their page can be found here. A big congratulations to both of them for challenging themselves and for absolutely smashing it! Can’t wait to support you both at the next one (hehehe)!
I’ve written many of these Chemotherapy Diaries posts now, so I have an established process. I tend to write 2 per cycle. The first one is usually easy as I write it straight after treatment day and have a lot to say because this is the most eventful day in the 2-week chemotherapy cycle. Then, in week 2, I try to write another post. My process here is to read back the week 1 blog post and get a feel for the vibe. I then square this off against how the rest of the cycle has felt, and that sets my tone for the new blog post. Today, I read the last one back, and I think the tone is staying the same, which should be a good thing. The problem is that I feel like there is more to instinctively write about when I read back and feel very differently from the original post. So, if you get to the end of this post and think “wait, did he speak about chemotherapy in this post?” Probably not… chemotherapy has been, sort of, fine, dare I say it.
There has been 1 stand out symptom this cycle – mouth ulcers. Usually, I may get 1 or 2 in a cycle and, although uncomfortable, they are manageable. I have some special mouth wash issued by the hospital, which burns your mouth and then leaves it feeling very numb. When faced with standard mouth ulcers, it has been very effective at relieving pain. My mouth ulcers were King Kong-ian this time, though. Not only were they large, but they were also right at the back of my tongue on both sides; the perfect spot to consistently and very, VERY painfully catch on my teeth. They wreaked havoc in my mouth from Thursday in week 1. It was only on Monday that I started to get any relief from them, and it was welcomed with open arms. Before that, I had been through every stage of grief about 3 times with them. Then I had a harrowing experience with some chilli oil.
Sunday night, I was feeling good. I’d had a lovely weekend, seeing friends visiting me from London and enjoying myself (despite the mouth ulcers). I had spent Sunday afternoon out with Anna and my friend Cam, having a roast dinner in a restaurant and relaxing. The whole thing lulled me into a false sense of security that I had a normal life. Scanning around for recipes to make Sunday night, I set my eyes on a coconut and lime potato gratin from Ottolgenhi’s Flavour cookbook (a fantastic cookbook, by the way – I really recommend it for anyone looking for impressive vegetarian recipes). As is standard with this cookbook, it took a good 2.5 hours to make; the recipes are always worth it, even when they have rogue ingredients that require a trip to your local Amazon store. By the time I came to eat it, I was absolutely starving and ready to reap the fruits of my labour.
I was about to find out that I am not as clever as I think I am, which may not surprise my friends and family reading this. The recipe requires you to make your own chilli and garlic oil by frying red chilli, garlic and some spices in oil. The instruction is to do this with 150ml of oil, use around 60ml of it for the recipe and save the rest for other things. “I’m only going to do 60ml of oil and not 150ml,” I said to myself, feeling like I’d broken out of the matrix. I didn’t think about how much more intense the chilli heat would be when a lower volume of oil was used. As I ate the final product and felt good about it, I realised after about 3 minutes that my tongue and, specifically, my ulcers, felt like I had dowsed them in petrol and was chowing down on a plate of lit matches. I tried water, vanilla yoghurt, milk, mouthwash, more water and repeated for about 20 minutes before things started to feel stable again. It was a stark reminder that chemotherapy is king and that my happiness is a slave to it. I had some toast with jam on, sulked and went to bed.
Besides the mouth ulcers, the cycle has been good since mid-way through week 1. Before that, it was still better than the average cycle, but I still felt tired and a little bit crap (a technical term used by the doctors). Week 2 has been particularly good, with me feeling better than ever. I baked my first Victoria Sponge cake for my friend Finch’s 30th birthday. As you can see below, my decorating skills are akin to a 5-year-olds art skill. That may actually be offensive to 5-year-olds. If there are any reading this feeling victimised, I apologise. Although the cake was really delicious, I did not realise what a pain in the arse they are to make. I had to add 6 eggs individually, whisking in between and alternating them with an additional tablespoon of flour. It was like a practical exam, something I hadn’t experienced since my driving test. I kept forgetting whether I had just done an egg or flour as I whisked and was getting flustered. So, despite it being delicious in flavour, I won’t be rushing to bake one again. The next time I can think of will be for my birthday, as it happens to be on a treatment day. There is nothing cooler than baking your own birthday cake to take to the chemotherapy ward, giving it to the nurses and reminding them that it is your birthday. Is it weird if I ask them for a slice and bring my own candles? Who cares, I’m doing it.
30 Birthday CakeBirthday Boy Cutting the Cake
I also had another go at the oat, cranberry and nut cookies that I failed at last time. They turned out much better, but they finally proved that I am not a fan of pistachios and don’t care to admit it. They’re just pretty average, in my humble opinion. I also made some cranberry and chia flapjacks. Flapjacks are becoming my favourite thing to make for mornings before I go running. You just feel like they’re little buttery balls of energy. They’re probably helping me in my pursuit to put on weight too. All of the baking is probably helping out in that regard. Finch’s birthday cake definitely did – I’ve never used so much butter, sugar, cream and jam. You start to see why this stuff is bad for you when you bake it yourself. Ignorance is bliss; stay as ignorant as possible, especially if you have a sweet tooth.
Oat, Cranberry and Nut Cookies (Left) and Cranberry Chia Flapjacks (Right)
So I am walking towards the next treatment day feeling positive. The oncologist told me that exercise should help me cope better with the chemotherapy symptoms, so I will happily attribute this cycle being so good to the running and use that as an excuse to do lots more of it. I have another call with the oncologist tomorrow. During the last call, he said we would arrange the scan for the week of February 7th, but I have had a letter through from The Christie arranging the scan for February 28th. I assume this is probably because the team have decided to extend my chemotherapy to 6 months instead of 3. That means that the scan is less time-sensitive now, and so doing it slightly later is probably better for determining the next steps after I hit the 6-month mark in May. It will be good to confirm this with him, though, as I was surprised by it when I first opened the letter.
3 more months of chemotherapy give this series more longevity, which is good. Here’s hoping to have lots of uneventful cycles where I can talk more about baking than any of the horrible symptoms I am experiencing. My pessimistic side says this is unlikely to be the case, but you never know. Today I had my blood appointment at The Christie. All went well. The wait was just over an hour which is a little on the long side, but I try not to complain about such things. I am receiving world-class treatment and not paying a penny for any of it, a luxury that many don’t have. I then met the infamous Nigel, the main subject of my ‘Inspiring Stories from a Pancreatic Survivor‘ post. His lovely daughter Julie who introduced me to him, arranged for us to meet at a garden centre near their house. I managed to resist pressure from Anna to buy another plant whilst there. There isn’t any room left in our bedroom anyway – our window has already been turned into a conservatory. It was really lovely to finally meet them, and it was plenty of fun, as I knew it would be.
Anna’s Conservatory aka Our Bedroom Window
Finally, I absolutely smashed my 5K today. Up to now, I’ve been running them in about 35 minutes. I ran it in just under 30 minutes today, which is a huge improvement. I started running and just felt determined to push myself for some reason. Once you tap into that part of your brain, the rest is history. The next thing I knew, I was letting out a scream as I hit 30 minutes, stopping the activity on my watch and looking down to see 5.07km. It felt incredible and was totally worth the dirty looks I got from the elderly people across the road. I let out a big smile at them, and they probably thought I was a murderer, but I didn’t care. It was a celebration, and they were invited. Let’s hope the upward trend continues (in week 2 at least – I’m not expecting miracles during week 1).
My Pancreatic Cancer UK Top Came in Time for My 5K
Today marks the start of the Run 40 for Pancreatic Cancer UK. I have written about it in pretty much every post since I signed up for the challenge, so I am sure you are as relieved as I am that it has kicked off. “Maybe he’ll talk about it less now it’s begun,” you may be thinking, and in response, I say – NEVER. It is now the perfect time to write an entire post on it.
My target of £2000 has been hit today, which is crazy. Thank you so much to everyone who has sponsored me so far. My Pancreatic Cancer UK shirt has not arrived yet, but I will be repping it for the runs once it does. It feels great to run for a charity whose cause is directly affecting me. I’ve run a marathon for Cancer Research UK before, but I did not have much personal affiliation with them then. It feels very different running for a cause that is now directly plaguing my life. I really encourage you to support campaigns for pancreatic cancer as well as signing up for events with them, like the Run 40 campaign. They help raise essential funds for their work and make a huge difference in people’s lives. I’ve found both Pancreatic Cancer UK and Pancreatic Cancer Action to be supportive, engaged and motivated.
The Just Giving page can be found here for those looking to support my campaign. I will be posting updates on there as well as through the blog. I’m going to raise the target again, this time to £2500. I started out with a target of 10% of that number, so it is incredible that so much has been raised. Thank you so much to all who have supported me financially in this campaign and generally through the blog. It was on my mind throughout the run today and it motivated me so much. A friend drove past me on my run and texted me, saying that I had a very determined look on my face, which made me happy. I feel highly determined, and it is a direct result of the generous sponsorships, so I’m glad that is the image I am portraying to the world. “What is that guy looking so serious about,” the random motorists probably say. ‘CANCER’ is the answer they probably don’t want or care to hear.
It’s amazing how much can change in 3 months. I’ve gone from eyeing up the next ultra-marathon, being excited about a challenging new role at a new company and loving my newly purchased flat in London to living with my parents, fighting cancer and not knowing what the future holds for me. Of course, some of my future is predictable, similarly to before. I believe the saying is ‘nothing is certain but death and taxes’. The cancer version of this saying would need to add chemotherapy, hospital visits and more blood tests than hot dinners. My new life sees me engaged to an amazing person in Anna, spending far more time with my parents than I ever thought I would again and focusing on a new set of skills. I am also looking at going back to work on a small-time commitment per week, which should be a really positive change. So although things may be different, there is so much that I feel grateful and content with.
Today, I had a taste of my old life back, though. I was starting out on a new fitness challenge and feeling more motivated than I’ve felt since being diagnosed. The sun shone directly onto me as I set out on an old favourite route. I’ve been running in the area since I was about 18, so it holds a lot of nostalgia for me. More so today than ever, I found myself reflecting a lot on the situation that I now find myself in. Those of you who have gotten very into exercising in your life may know what I mean by the meditative state you can achieve. You don’t always hit it, but it is so blissful when you do. In my experience, I know when I have hit it because, at the end of the run, I can barely recall a second of what I was thinking about. My mind never goes completely silent like an actual state of meditation, quite the opposite. I find myself processing lots of thoughts and addressing them with a razor-sharp focus. It is when I feel most able to cope with all of the quandaries and complexities of my life. By the end, I struggle to recall any of the things I dealt with, but I know I feel better about them. It used to help me deal with problems at work, relationships and general fluctuations in mood. Today was one of those days where I seemed to hit that stride again towards the end, and it felt sweeter than ever.
There was a strange moment on the run where I remembered being in such a mood on a previous run. I couldn’t pinpoint the exact run, time or place. I felt connected to the thoughts in such a vivid way that I am sure it was on that same route, but I am well aware that this could be nonsense. On that previous run, I had been thinking about someone offering to tell me exactly when I died, how and where. I can’t remember why I was thinking about it, whether it was something from a film or perhaps a discussion with friends, but I remember thinking about it. At the time, I felt that I would want to know, and I remembered telling myself that it would allow me to enjoy my life to the fullest, even if it said something unexpected and unappealing.
Today, as I ran along a route well-trodden by me throughout my life, I felt that I had grown as a person as I remembered these thoughts. The truth is that at the time, I didn’t ever expect that I’d be dealing with such an awful cancer at such a young age. I thought I was too young, too healthy and too genetically lucky (there is very little cancer in my family) to suffer such a fate, especially at 28. It felt good to tell myself that I’d want to know what kills me and when because I covertly thought whatever killed me, it wouldn’t be until I was much older. Most people probably feel the same way who are in their 20’s and seemingly healthy; why would you assume otherwise? These days though, I have a genuine threat to my life. I’m currently classed as inoperable, and unless my tumour can shrink enough and away from the artery it has spread to, then I will die of pancreatic cancer. Even if this happens, I will need a very successful operation and recovery to keep the cancer away, as the reoccurrence rate is very high. Even with a very successful operation, there is probably a good chance it could come back. It all sounds very bleak, but it is the reality of pancreatic. I feel more understanding of the original diagnosis than ever. It was delivered in such a bleak tone. Until then, I had convinced myself that I was young enough to fight it and not be threatened by it whatever the cancer. This was the first time that faith had been well and truly shaken, and I have been pessimistic about the doctor who delivered it since. I don’t feel like that anymore; it is a shit cancer to have, and the news was delivered in a tone that represented this. He could have reminded me that I am young and very fit, though, just once. That’s what everyone else does, and it still makes me feel a little smug, even if I know it could count for nothing in the end.
Despite all of this, I feel happier and more accomplished than ever. As I ran, I thought about all of the people I’ve interacted with who have been affected by cancer. I thought about the posts I see on Twitter, the adverts for Cancer Research UK, and the grieving relatives I’ve met in support sessions. There are so many horrible things to focus on with cancer, but it is undeniable that it brings out an incredible amount of spirit in people. The support that my campaign has garnered already is proof of this. It allows me to feel grateful to the cancer for something, which feels like an important state of mind to hold in my situation. I cannot change my diagnosis, and being angry at the situation won’t increase my chances of survival. It may actually decrease them. There are people who are far more morally superior to me who have been diagnosed with cancer earlier in life, and morally inferior people to me who have tread many years longer without any health issues at all. It doesn’t mean anything in the grand scheme of things; I am proof that cancer isn’t too fussy about who it impacts. No amount of exercise and avoiding red meat stopped me from being affected by it at a statistically bullshit age (not a phrase used by the doctors… yet).
So, I ran 5 miles today without stopping. Full disclosure: I did walk at one point. I was going up a hill and realised that it would be quicker and more efficient to walk. It marks the first time that I have managed to run a 5K without stopping, as well as being the longest distance I have run since being diagnosed. The challenge really has got me feeling determined. It also helped that the weather was warmer, so my throat wasn’t closing up due to the side effects of chemotherapy. Usually, in the cold, I am wrestling with my throat feeling tighter and pins and needles in the back of it; it’s very uncomfortable.
I think my tactics for the challenge are going to be: take advantage of week 2 in the chemotherapy cycle and get the majority of miles in then, and record my walks in week 1 if I am struggling to run. The aim is to run the entire 40 miles, but allowing myself to record walks in week 1 ensures I cover myself if I have a nasty cycle. Hopefully, they continue to be like this one, which has been mostly Ok. I have learnt first-hand that the cycles can be highly variable, though, so I won’t be betting on it.
It has been a great first day, and I can’t wait to challenge myself over the remaining days of the month. The next mini target is to complete a 10K. I feel much more confident that I will do this after today, especially if we get some more sunny days. I’ve been enjoying signing the blog posts off with a song. Today’s is a song I found recently which is super vibey. It is the soundtrack to the start of the challenge, and a month of good vibes and achieving things, no matter what news the progress scan brings on February 28th.
There are some new challenges of chemotherapy seeping in. I assumed (perhaps naively) that I would understand the lay of the land by session 4 and that the difficulties would be mostly known in my treatment routine. It had even occurred to me that I might run out of things to write about… that is proving to be a preposterous thought. It’s becoming a game of ‘How much do I share?’ as more distressing and frankly disgusting symptoms start bearing their ugly head.
A reality of pancreatic cancer is that you have to get used to discussing some pretty unsavoury topics. I am referring specifically to toilet habits. Your stools are some of the best identifiers that you have pancreatic cancer. A primary function of your pancreas is to create enzymes that help break down fat in your food. When you have something inhibiting the functioning of your pancreas, such as a cancerous tumour, it will stop producing enough of these enzymes. The result is that you cannot digest fat easily, and your stools may float and/or appear a bleached colour. Originally, processing fats was only mildly uncomfortable for me, and I would have a similar feeling to indigestion as I lay in bed at night, which would remain until I got out of bed in the morning. It then became extreme after about a year of mild symptoms, which eventually led me to A&E. Of course, I did not realise that this was the problem at the time, I thought it was a mild food allergy or something.
I can’t remember when I first got asked the question ‘Do your stools float in the toilet bowl?’ by a doctor, but their foresight was bang on. I had not noticed until the question had been put to me, though. I didn’t tend to spend too much time studying the toilet bowl, surprisingly. Knowing these symptoms can ultimately be the difference between life and death, though. The earlier you can identify a cancer in your system, the better your chance at survival. It is especially true of pancreatic cancer, so I thought it worth mentioning here. The below post from Pancreatic Cancer Action details the main symptoms of the Less Survivable Cancers group. They’re worth knowing – I am an example of someone who was blindsided by a diagnosis and could have benefited from understanding these symptoms far earlier than I did. I only became aware of them after my diagnosis.
Back to chemotherapy treatment cycle number 4. At the beginning of your treatment days, the nurses ask you a series of questions that they then numerically rate based on your answer. “Have you had any diarrhoea?” For the first 2 cycles, I gave a confident and smug “No!” By cycle 3, it was a meek “a little bit on day 7,” which is my off weekend Saturday. When I get posed the question on Saturday about cycle 4, I am not sure where I’ll start, really.
For the first 6 days, everything was pretty good. I had to convince myself to not run on the first Tuesday after treatment. While walking the dog with my mum, I was boasting about how good I felt. My little puppy Lucy was running after me as I jogged ahead. The oncologist’s words were sitting heavy in my mind, though – “Don’t do strenuous exercise in the first 7 days of treatment. Your body has enough to deal with processing the chemotherapy drugs, and you don’t want to give yourself chronic fatigue.” The little jogging game with Lucy was as far as I should push it, I thought, secretly plotting to run at this stage in cycle 5 if I felt this good.
Thursday rolled around, and I had the session with Pancreatic Cancer UK. The session was on Pancreatic Enzymes and Diet. In the ‘Adjusting to Life With a Less Survivable Cancer‘ post, I spoke a little about it. As I mentioned in the introduction, the pancreas does not function normally when suffering from some form of ailment. To supplement the suffering pancreas, Creon is prescribed to take with meals, food and fatty drinks, like those with milk in. This tablet contains pancreatic enzymes to help your body break down the fat. You take these tablets with every meal, eating them at regular intervals to ensure a distribution of the enzymes throughout the digestion process. We’re conditioned to think taking large amounts of pills is bad because it is with things like paracetamol. Creon is a different beast. I probably consume approximately 25 of these pills a day. You really do have to swallow them constantly when digesting something containing fat. There was a rather comical moment on the call where another attendee started listing foods one by one and asking if he needed to eat Creon with them. “I like to eat half a chocolate bar in the middle of the day sometimes. Do I need to take Creon with that?” He asked. The nurse politely repeated what she had already said many times, in many ways, that they must be taken wherever fat needs to be digested. “What about a packet of crisps?” he followed up. It was rather comical, but I was trying to hold my composure on camera. I really wanted him to start listing all the foods he likes to eat individually, but he stopped there. Shame.
Perhaps I boasted too much on the call with Pancreatic Cancer UK that the chemotherapy was going well, that my symptoms weren’t proving to be too bad. “My diet hasn’t even been impacted. I’m eating as normal generally,” I boasted, not realising fate was being baited right behind my back. It was ready to strike.
Friday, the diarrhoea started and didn’t really stop. There was blood by the end of the day, and I was on the phone to the chemotherapy hotline. I know this is disgusting, but it’s just the reality of chemotherapy, unfortunately. I spent most of the day in bed. It really was exhausting dealing with this stuff, and I felt terrible. On top of feeling drained, I felt uncomfortable in my own skin. It all came out as my fiance sat talking to her mum Kathy on the phone. It is strange how many times I have bared my soul on FaceTime to Kathy; I’m not sure why that scenario is the catalyst for me to do so. After my endoscopy, the true extent of the trauma only came out later in the day when Kathy asked me on Facetime how I was doing. Before that, I had been a closed box to Anna and my mum – only skimming over the horrific details.
“I just don’t know what will happen. I can’t confidently say I’ll be alive in 5 years, and what will I have gone through if I am. All of a sudden, I don’t feel like I can plan for any future.” The words were flowing. I didn’t even realise they were bouncing around my head, but they must have been because I was reeling it off like a script. It’s challenging to keep your head in a positive place when something is happening to your body that is so abnormal. I felt tired, dehydrated and bored of it all. Anna and I sat crying together after the call for a few minutes, then relief. We were laughing again 10 minutes later. We don’t stay down long.
Saturday, I thought things were better, even if I still felt terrible. Some friends from London came to visit, along with my best friend, Luke. We had a great day – lunch, dog walk, board games, bed. I even had 2 pints with lunch, something I haven’t done in a long time. It all felt… normal? It was exactly what I needed. Unfortunately, Saturday night, there was more blood. Another call to the chemotherapy hotline and a lapse in positivity. It was Ok, though, and by Sunday, I felt good again; other than being tired, but that is part and parcel of chemotherapy. Tiredness becomes as reliable as your shadow in the sun.
This week is going better. The sun has been shining, I’m getting back to being active, and my mum and I are doing yoga every morning. Today I went running again and hit the 5K mark! I walked for a few minutes at around the halfway point to give my body a bit of a rest, but ran other than that (albeit, slowly). Yesterday’s run provided me with a baseline, so I wasn’t quite as shocked by how my body responded to the exercise today. It’s yet another microcosm for the way I seem to process things. The event happens, and I respond negatively; then, after sitting on it, I work through that negativity and recognise the positives, allowing me to build on it. Yesterday, I felt disappointed that my body felt slower and more lethargic. Over the rest of the day, I felt more optimistic for having managed to run again at all. Then today, I better understand the parameters of my body and realise that I can still hit targets so long as those targets are adjusted for my new reality. That then allows me to push myself again, and feel good about things. Maybe one day I’ll be able to curtail the initial emotional and negative response. Maybe.
I am sitting writing this at 2:00am on Monday December 20th. My sleeping pattern is a bit unusual these days as I frequently feel tired (or just generally bad) throughout the day, so I spend a lot of time resting at unorthodox hours.
I’ve received so many amazing comments on the blog so far and I feel so much gratitude for everyone who is taking the time to read it. “A problem shared is a problem halved,” I said to my friend Finch on Saturday; admittedly, I was talking about him coming over at the same time as our other friend Benedict who was also planning on visiting me. But the saying is very applicable to the blog and knowing that people are finding themselves invested in the journey makes me feel so supported and happy.
It is going to come with some growing pains, and I am still establishing exactly what I want to do with the blog overall. The posts so far have been very cancer heavy, which is to be expected. It is my life right now, and it takes a lot of my time and energy to stay on top of the battle. But cancer isn’t my life, and I like to think there is more that I can write about that is worth the interest of you, my dear readers. All these thoughts have led me to contemplate a lot of things about myself, and the unusual hours I find myself awake and active gives me plenty of time to do just that. So, I am challenging myself to write a single article a week where I am not allowed to use the ‘C’ word or discuss the ‘C’ word. This is my first attempt at doing so, and this paragraph is the only place that you will find the naughty word mentioned.
I’ve always found myself to be a person that spends a lot of time reflecting on the past. A ‘worrier’ is probably the not-so-technical term. It is something about myself that I have always found very frustrating, as historically it has led to me obsessively criticising myself and how I’ve behaved in the past, with no beneficial light to shed on the situation. When people use phrases like ‘know yourself’, it can feel like quite a vapid thing to say. In my experience though, it is extremely important to spend time trying to know yourself and what drives you in life, as it constantly seems to change and at a pace that can be hard to keep up with.
I am only realising this recently, and it is making me appreciate the time I spend reflecting on the past more. It allows me to discover things about myself and better identify some of my drivers, whilst trying to learn things from past situations. If you can learn something from what you perceive to be a bad situation, it makes that negative mean something to you. That gives it a value that it may not have otherwise had, and it should help change the way you cope with a similar situation in the future. I can think of a particular example from my experience that I hope demonstrates my point well.
When I was a teenager, I used to have a bad habit of binge drinking. Of course, this isn’t an unusual or undocumented part of British culture. I always knew that I didn’t like it about myself though. I would frequently drink to the point that I would completely blackout, I’d spend a lot of money that I didn’t have and then I’d feel sick and anxious for days afterwards. Despite this, I continued doing it for years, from about 16 until I was probably around 25, although it was less frequent as I got a full-time job after university. I guess it’s called being a ‘weekender’ really, and I’m sure many people genuinely enjoy this lifestyle in a way that I didn’t. For me, I always felt like I did it because I just did. What else was there to do on the weekend? How else would I remain relevant in my friendship group? It was this final point that bothered me the more I reflected on it.
Over time, I realised that getting absolutely blind drunk had become my main character attribute in my mind. I think now that it was a deep insecurity of mine manifesting itself from when I was young. I’m the guy that is always willing to get ridiculously drunk and make an idiot of himself, what else do I have to offer a group of people? Wasn’t that the only reason I had friends? I always felt a bit confused why people liked me when I was younger, and I’d regularly think people were talking about me or plotting against me for some reason. Every time I agreed to go on a night out at short notice or was one of the last people to go to bed, it felt like a tick in my social book. But I had a real personal interest in fitness by the time I was in my 20s and my favourite time of day was the morning, both aren’t compatible with a lifestyle revolving around heavy drinking. I was also getting much more anxious during hangovers after university, and the whole thing was starting to feel like a form of self-abuse.
Eventually I challenged myself to have more confidence in what my company offered people. If I lost friends because I left the pub after having 2 pints, then I decided that they weren’t the type of friends I wanted anyway. For a while I had to adopt various strategies for managing the problem. I would only drink shandy if I was drinking beer, or I’d suggest going for coffee instead of a pub when someone asked me if I wanted to meet up. The most effective strategy for me though, was finally committing myself to running. I always enjoyed running, but it would take a backseat in my priorities because I didn’t want to miss social events. I saw the 2 things as mutually exclusive because when I went out, I had to drink a lot and make sure I was keeping up my role in the group, the drunken buffoon.
By starting to enter marathons and ultra-marathons, I was starting to commit myself to a lifestyle that was the antithesis of the one I was trying to move on from. It gave me a motive to change that negative behaviour which had far more meaning and which communicated with the values and behaviours I wanted to see in myself. When I finished my first marathon in 2019, I knew I was really changing myself for the better. I had done it; I’d committed to training for something and made it all the way to the end. That same year, me and my brother Greg completed our first 100km ultra race together in the Peak District. I needed more.
In 2020 Greg and I were due to attempt our first 100-mile ultra-marathon – the GB Ultra Scotland. The event was cancelled days before it was due to take place. We had our accommodation booked and had trained ruthlessly all year. Instead of letting our fitness go to waste, we travelled up with our parents in support of us and set out to do the first 100km of the route; we decided it was too dangerous to attempt a 100-mile race unaided, around a course that we had never set foot on. It was an extremely challenging day. It took us 13 hours, 29 minutes and 44 seconds, and we climbed a total of 9754 ft (the equivalent of climbing Snowdon just under 3 times).
I was surprised at how much more confident I was feeling in myself. I’d have the occasional night where I’d get a bit carried away, but they were few and far between, and I didn’t feel like I was doing it for the same negative reasons that I had historically. I was just having fun and didn’t feel like stopping early that night. For the first time in my life, I felt that I understood my relationship with alcohol and wasn’t so reliant on it. It made my connections with my friends better, and they felt more genuine to me. It did also alienate me from other friends, but that was part of the challenge to myself. The point of all this is that by spending some time getting to know myself better, I made a change in my life that has made me so much happier. Try to learn something about yourself and see what challenges you can overcome. It pays dividends when it works.
Ebb and Flow 