Scan Day

The Road to Recovery

Saying Bye to Lucy Puppy This Morning

The day has come again…. attending the CT scan at the end of phase one of treatment. My last scan was at the half way point after 6 chemotherapy sessions, at the end of February, and produced good results. My tumour had shrunk from 3.2cm to 2.1cm, my tumour markers had come down considerably and the tissue around the artery was looking ‘healthier’. It was positive, but I struggled to allow the news to settle in as we left the consultant’s office. Anna cried immediately. I suspended any positive feelings I had. I’m not sure if it ever sank in fully. The results were then taken for review at the MDT meeting, a cross-functional meeting including those all-important surgeons, who still determined that I wasn’t surgery ready. It felt disappointing at the time. It wasn’t disappointing, though. I haven’t spoken to anyone who has had their chemotherapy interrupted because they were surgery ready. I’m sure it happens, but if the chemotherapy is working, why not continue? It wasn’t the reasoning that the oncologist gave as he relayed the decision to me at the time, but it is the bright-eyed-bushy-tailed interpretation that I decided to translate it into. That argument for continuing with the chemotherapy could be applied ad infinitum, I guess. Perhaps I shouldn’t suggest to the oncology team that I am happy to do chemotherapy forever. They may class it as a clinical trial and keep me in a cage to observe me. “He seems a bit distracted today and he hasn’t showered in 6 days. It’s quite disgusting,” they’d say. “I understand you, you know. I’m not a rat,” I’d respond, laying in my wheel like it is a hammock. They’d give me a funny look, write something in their report and walk off together in their white coats.

I find myself starting to write this post in the CT Scan unit (Department 11) of The Christie, drinking my dye drink every 15 minutes and acting like I own the place. It’s funny how much bravado you can bring on only the second time you visit a part of the hospital. I caught myself showing off that I knew the process. The nurse took me into a private room just after I arrived to do the introductory survey. Before she got to the questions, I said “I asked the district nurse to leave my line in yesterday, so you guys don’t have to use a new one.” What a hero I am. I’m sure she’ll be telling all of her friends about me for the rest of the week. “What a forward thinking-gentleman,” I imagine her saying to the team later, out of earshot of the rest of the room. Perhaps I should tell her about my blog, too. Although, I’m sure she doesn’t want to read about cancer to unwind from her job where she stares cancer in the face all day, every day. Maybe I’ll just tell her I’m a writer; that’s a cool thing to say, right? I can even say I’m published! Ok, I’m not going to say any of this, but it’s fun to pretend. She’s probably already forgotten about me in reality, and that’s the way it should be.

The nurse asks you what flavour dye you would like after you have completed the induction questionnaire. I go for blackcurrant, but the aniseed flavour easily cuts through it. Why are 95% of oral medical consumables flavoured like aniseed? (Please Note: statistics are not accurate and have been made up by the author). You are instructed to drink two cups of the dye straight away, then have one more every 15 minutes until you are called for your scan. It works out as approximately 900ml of liquid in one hour. I made a bit of a fool of myself as she handed me my bottle and cup. “It’s just one cup every 15 minutes, isn’t it?” I only phrased it as a question to hide my confidence; showing off was my prerogative. “Yes, but you need to drink 2 cups straight away too.” Damn, Daniel – you forgot about the initial 2 cups. She’s not going to read your blog now – any cancer clout you had, you just lost.

That wasn’t the end of my over-confident adventures in department 11. A woman asked a gentleman next to me in the waiting area if she needed to take off her jewellery. He responded saying he wasn’t sure but he thought so. I then cut in, confident as an ox and ready to dish out more knowledge on the lucky souls who happened to be in the waiting room with me that day. “Yes, you take it off and then leave it in a locker around the corner. They let you do it before you go in for your scan.” This wasn’t my first rodeo. She smiled and thanked me. “No problem, I responded.” BatDan strikes again. Just an ordinary man with an extraordinary appetite for helping others.

The nurse called me about half an hour later, once all of the dye had been consumed and I was ready for the scan itself. I followed her to the next waiting room, which is situated outside of the room where the CT scan takes place. A few minutes later, she calls me into a private room to flush the line that is attached to my port, and ensure it is working. The nurses flush the line using a syringe with a saline solution inside. They attach it to the end of the line, and then push it into your bloodstream to ensure that the device is working properly. Once they have confirmed it pushes in, they use another syringe to pull out some blood. It is unusual at first, but you get used to it. The saline solution is usually cold, and you can feel it as it makes its way into your body via the port in the chest. Watching them then pull blood out of you makes you feel awfully human. All of those lessons in science really told the truth – we’re just skin, bone and organs with blood circulating around us. Who knew? I was sure I was above it all. Maybe I’m not indestructible. I mention to the nurse that I need to take off my ring, watch and bracelet. “You’re only having your chest, abdomen and thigh scanned so you will be holding your hands above your head. You can leave all of your jewellery on,” she said, to my dismay. I seem to be full of bad advice today – I need to learn to keep my mouth shut.

Fifteen minutes later, I was called into the scan room. The reason that you need a line in during the CT scan is so an additional dye can be used during the scan. I’m not sure what the difference between the two are, I just do whatever the doctors tell me like a good student. The dye that is provided intravenously carries a warning – it feels warm around your genital area as it is pushed into your body. You are usually put through the CT scanner once without the intravenous dye, then the second time you receive a warning that they are issuing the dye and you may feel an ‘unusual sensation’. What they are referring to is the feeling that you may have wet yourself, but you haven’t. It is just a strange feeling of warmth around that area. It is quite disconcerting the first time – you get used to it by the fourth (I’m showing off again, aren’t I?) I’m unsure if it happens to both men and women, actually. The whole thing is very unusual, but over very quickly.

That was it. Another progress scan completed. I met my mum and Anna in the M&S cafe in the main part of the hospital. Our number 1 cheerleaders were waiting there with them – Nigel the Pancreatic Cancer Killer, his daughter Julie and his wife Mary. They all read the blogs (perhaps not Nigel, but I forgive him), send me lovely presents regularly and even come to the hospital to support me, like they did today. Not a bad group to have onside when you’re going through something as traumatic as this. We sat and chatted for an hour and a half before deciding to give the rest of the customers some peace and quiet, and go our separate ways. It was a nice way to round off the afternoon.

I’ve been feeling unusual today if I’m honest. It isn’t nerves, I don’t think. The scan itself is almost irrelevant – you have to show up, follow the instructions and then you’re on your merry way. The letter scheduling the follow up appointment where I will receive the results came through this morning, though. Thursday May 26th. I thought I had more time to enjoy the bliss of ignorance. The oncologist said it’d be 2 weeks which would have been the following week, but he probably meant within the next 2 weeks. It should have gone to the MDT meeting by then at least, so what I will learn in that meeting will really determine the next phase of treatment. It may have thrown me, though, as I wasn’t expecting it to be next week. I’m glad it is – the sooner I know, the better.

The other thing is that it is early in the cycle for me to be being so active. I usually have a few days before I have any time constraints or commitments, such as hospital appointments. My chemo-fog brain feels like it is operating on auto-pilot. It may explain my inexplicable ramblings about the nurse at the start of the post, but I’d probably do that anyway if I’m being honest with myself. I’m now sat at home reflecting on the ongoings of the day… all I need to focus on now is pushing through the cycle and getting to that results appointment.

Before I finish the post, my Fiancee Anna and her best friend Sophie are running their first half marathon this weekend. They are raising money for The Christie, the incredible hospital that is providing my treatment. I’ve always been fond of the below lyric ever since I first heard it, and it feels relevant here. The band is a christian metal band that you are unlikely to enjoy, but you don’t need to enjoy the music to appreciate a well-written lyric. Those of you who have followed the blog for a while have likely experienced the breadth of my musical interest – I will listen to almost any genre to find something new and interesting.

“The walls of a church don’t make it holy.

It’s what’s authentic that completes the sum of it’s parts”.

The intention of the writer is to give credibility to his religion, I believe. The sheer act of building a church doesn’t make it a special building, it is the value that is then applied to it by the people who believe that it is of greater meaning than another structure. They use it as a place of worship and it represents something more to them – these practices elevate its status and create authenticity.

I feel the words are so applicable to The Christie, too. There are many things about a hospital that provide it with authenticity – the qualifications required to work there, the complex equipment used inside and the knowledge that you went there that time when you broke that bone, and you left with a solution that ultimately fixed it. The Christie adds another layer of authenticity, though. The staff, and the way that they talk to you and treat you, is unlike any other hospital I have set foot in. You feel that they care about you, and it doesn’t seem like an act. I’ve had so many deep, interesting and meaningful conversations with the staff at this hospital. They’re always ready to support you, whether that is having a laugh or sitting down and digging deeper into what is upsetting you. Sometimes, you just want to be treated like a human, not another roadblock to someone leaving work. At The Christie, I’ve never been made to feel like anything but a valued customer in a complex ecosystem, which is full of charged emotions, tough revelations and, sometimes, utter despair. It is an incredible place, and I’m so proud of these two for raising over £1300 for them already.

I will raise money for them myself eventually, when I am healthy enough to do so. For now, I will include the link to Anna and Sophie’s fundraiser here. If you can donate, please do. If my requests to donate to fundraisers is preventing you from turning your gas on this month, please do not. I don’t want to carry the weight of that burden – I’ve already got pancreatic cancer, didn’t you know?

72: A Post About Averages

The Road to Recovery

Sleeping on the Sofa with the Dogs – Typical Week 1 of the Chemotherapy Cycle

This will be my 72nd (published) post on the blog. As soon as I saw that the last one was 71, I knew what I wanted to talk about in it. 72 was not a significant number to me a year ago. My readers who are familiar with pancreatic cancer, or are good at internalising figures and have read my blog for a while, may know why 72 is a significant number now. It is the average age of diagnosis for Pancreatic Cancer victims, or I believe it is anyway. Originally I read 76, but I have since read 72 on various charity websites, so that is the one I regularly quote now.

I feel guilty for frequently using this statistic to comfort myself. “You’re much younger than the average person with this cancer, that must count for something.” It isn’t just me who says these things – I get it from doctors, nurses, friends and family. It does bring me some comfort. You have to find ways to cope under the circumstances you find yourself in. When I sit down and think about those people being diagnosed in their 60s, 70s and onwards, though, the feeling isn’t one of comfort. I feel sad. Even though it is better to be diagnosed with cancer at that age as opposed to in your 20s because you will have lived a lot more of your life, you still have a life that you want to hold on to. You likely have children you love, and you may have grandchildren you want to see grow up. It cannot be easy being diagnosed with pancreatic cancer and having to read the bleak statistics around it, knowing that you cannot find the same natural defences against these figures. The typical diagnosis is also in advanced stages – mine was locally advanced. That means that a lot of these people are also being diagnosed too late, making their chances of long term survival even slimmer. It is sickening, really. I’m not sure if locally advanced actually falls into the category of ‘advanced stages’, but I would imagine it does. I think, because of my age, the oncology team just felt that there were a lot of options for me. Perhaps there wouldn’t be so many if I was 72, I’m not sure. It still guarantees me nothing, of course. But there are no guarantees in life. We’re regularly graced with threats of nuclear war in the news right now. It isn’t a nice place to gain some perspective on my personal circumstances, but I cannot help taking some from it.

These feelings are tempered when I consider the case of Nigel, who I have spoken about on this blog a few times. His daughter contacted me through the blog and told me about his story. He was diagnosed at 71 – a year short of the average. I first spoke to him on the phone about what happened to him. He was diagnosed and given 8 months to live. After having an incredibly successful bout of chemotherapy, his tumour had reduced by 55% and the cancer, which had previously spread to his lymph nodes, had completely disappeared from them. Nigel finished his 6 months of chemotherapy treatment still believing that it was palliative, before receiving a phone call from the hospital a month later informing him that they were willing to try and operate. He’s now 3 years clear and full of beans. We’ve met up frequently and our families have become close. They’re invited to Anna and I’s wedding and I can’t wait to celebrate the day with them. Their support has been incredible and unrelenting throughout my treatment.

Nigel During His Treatment – Taken By His Lovely Wife circa 2018

His story is unusual, though. The statistics will tell you that much, although I’m not going to dig into them too deeply here. I’ve done all of that in previous posts and I’m trying not to dwell on them too much; no matter how young you are, they don’t give you a lot of hope for survival. Nigel’s story tells you that dwelling on the statistics isn’t helpful. It actually tells you that it isn’t worth dwelling on the things being said to you by the medical team too, but that is much harder to implement in my experience. If my team told me that I had 18 months, I don’t know how I’d hold myself together. But, I would have said that about any cancer diagnosis a year ago, so I actually feel confident that if something like that does happen to me, I’ll find a way through it. Especially with the support that I have around me. You quickly adjust to things – just like how we all adjusted to the ‘New Normal’ during Covid; the lockdowns, the new rules, the changes to social etiquette. We always adjust.

So, I strive on toward recovery. Not an average, not a number, not a statistic. Just another person with cancer who is trying to beat the odds, whilst trying not to dwell on those odds. My chemotherapy line will be taken out at some point today when the district nurses come round – that always makes me feel good. I finally get to shower again! Then I have one more session of chemotherapy before the big scan, which has been booked for Tuesday, May 17th. It is a bit unusual that it is booked in week 1 of the cycle – it was in week 2 last time and I thought the oncologist said that this was the most logical time to do it. I don’t mind, though. I might be feeling a little bit dodgy that early in the cycle but you get pretty good at feeling dodgy when you’re on this type of chemotherapy!

I came across an inspiring story yesterday. Of course, its origins are tragic, as they often are with pancreatic cancer. Pia Eaves was a loving wife and mother of two daughters. She died of pancreatic cancer at the young age of 54, only 11 months after being diagnosed. The Walk for Pia campaign is a challenge created by her family to raise £100,000 for Pancreatic Cancer UK running from April 20th until May 1st, yesterday. During this period, they walked 200 miles and have raised over £90,000 – an absolutely incredible feat. I am totally in awe of them. Pia was a fitness instructor and kept herself in good shape. She was also well below the average age of diagnosis for a pancreatic cancer sufferer.

It was hard for me to not relate to what I was reading as I studied the website, reading the details of her life, and the disease which ultimately brought it to a premature close. I was running ultra-marathons just weeks before I went into the hospital, where we started to establish that what was wrong with me was not going to be easily sorted. Things continued to spiral downwards from there. The PET scan and endoscopy procedures are to thank for my diagnosis. Before that, the medical team seemed sure that my issues were all caused by a cyst on my pancreas, leaving me jaundiced. I’ll never forget the look on their faces as they walked into the room to deliver the final, crushing diagnosis… pancreatic cancer… spread to the artery, but not spread outside of the pancreas… straight into treatment… need the chemotherapy to ‘take’… an extremely aggressive form of cancer… the condolences as they left the room… the cries that echoed around me… the grin on my face and the shaking of the head… How is this really happening? I still ask myself that sometimes, but less frequently now. It doesn’t matter how it is happening, it just is. There isn’t a why, there is only a what. I’m ok with it.

On that note, I’ve been looking at jobs in cancer charities that I believe I could do with my experience and skills. There are a few in data and analytics that sound appealing. It made me feel motivated and empowered, feeling like one day I could be wearing my survivor status with pride, and using it to energise myself in a role making a difference in people’s lives. People who are suffering in similar ways to the way that I have suffered, striving to survive in the way that I am. There are so many of us out there that it forms more than just a community – it is a whole section of society. It only seems to be growing in number as the field of medicine identifies more effective ways to diagnose, and is successfully doing so earlier. I’m not even sure I would have been diagnosed 30 years ago with the symptoms that I was displaying. Maybe not even 20 years ago. I think it shows that I am in a good place that I am seriously considering a long term future, and what plans it might hold for me. Hope is a valuable thing when you’re fighting a life-threatening cancer. Even when the statistics tell you that you have a 1% chance of surviving 10 years past your diagnosis, you can hope harder than anything that you are in that 1%. Let’s see what the scan says, and what the next stages of treatment will hold. It’s an exciting but scary time, but it is necessary to move things along.

I want to dedicate this post to everyone who has been affected by cancer. Whether you are grieving a loved one, a sufferer yourself or you work with people affected by it. There’s a lot of pain and suffering involved in cancer, but there’s an opposite side of the coin where it can bring out amazing things in people; raising £100,000 in memory of a lost mother, to the benefit of the thousands of people who will be diagnosed with pancreatic cancer every year. I read on the website that around 8,924 people die of pancreatic cancer every year – an average of one person every hour… yet the cancer only attracts 2.1% of the UK Cancer Research Budget, it is the 5th deadliest cancer in the UK and has the lowest survival rates of the 20 most common cancers. As a sufferer of the cancer, the biggest source of hope I have found is by speaking to people who have beaten these odds, and who continue to send me messages of positivity, encouragement and unfaltering support. They tell a different story to the statistics – one that you rarely find online. That story says that it is beatable and that there is a future beyond it.

Heartbreaker Lucy – The Ultimate Chemotherapy Companion

Drew Jones, a Biopic

Raising Money for Pancreatic Cancer UK

Drew and I – Taken in 2017

I’m finally coming out the other side of the Coronavirus tunnel. Our house is a hotbed for it, though. Anna started the fire about 2 weeks ago, before passing the torch to me at the start of this week, and I have now inadvertently set my parents alight with the Flames o’ ‘Rona (not the most pleasant imagery – I apologise, especially to my family). As a result, the house is pretty locked down right now. My parents are both handling it well. In fact, had we not been testing frequently because of the recent confirmed cases, I’m not sure they would have bothered testing with the (lack of) symptoms they have.

Yesterday at about 17:00, Anna and I decided to walk Lucy along the canal to get out of the house for a while. I messaged my good friend Drew and asked if he fancied meeting up outdoors and having a beer once we got to the village he lives in. He and his girlfriend Em agreed, and it was settled. We sat there, having a beer, relaxing, soaking up the evening sun, and chatting to people as they walked past – mostly about Lucy. She’s still quite the head-turner, even if she has grown a lot in the past few months. It was a lovely way to spend a few hours in the evening, and it is the first time that this chemotherapy cycle has felt like it is truly subsiding.

I’ve been friends with Drew since early on in high school. I can’t remember how we started chatting, whether it was through a particular class or not. We had a similar taste in music at the time, so that almost certainly had something to do with it. What I do know is that he has been one of my best friends ever since. He’s taken on the challenge of running his first half marathon and is raising money for Pancreatic Cancer UK. You can find the link to his page here. He’s set himself an ambitious fundraising target but, if my Run 40 campaign taught me anything, it is to shoot for something impressive when doing these things. I started out hoping for £250 and ended up raising over £7000. A sizeable amount of that total was donated after Drew shared the fundraiser in a few local Facebook groups. I even like running so Drew deserves far more money than me, although I get the impression he is growing fonder of it. If you look at the Just Giving page, he’s also written some extremely charming things about me. Time for me to return the gesture and tell a few stories. Soon I’ll write a blog post about something other than nostalgia, I swear. Soon.

The walk along the canal that Anna and I did is nostalgic for me for two reasons. Firstly, I used to walk that way to work at The Broughton Arms, a pub located on the canal in Rode Heath. The pub has a big beer garden. As soon as the sun comes out, the beer garden is as busy as a dollop of jam next to an ant nest. I worked there for about 4 years, from when I was 16 to when I went to university when I was 20. Drew also worked in the kitchen as a chef. The downside of working at the pub was that it made you dread the sun, as that meant you were going to have the shift from hell. Even worse was when it was unexpectedly sunny because that meant that you didn’t always have the number of staff you need for the shift. That meant that you never got on top of most of the jobs during the shift, and you’d be there much later than usual making up for it. When this happened, Drew would turn the music up to 11 as soon as we stopped serving food, and we’d both run around the kitchen, cleaning the plates, mopping the floors and trying to speedrun the entire chore list. It takes a special thing to make you hate the sun, especially in England where the sun is rationed like meat during the war. That is just what happened when you worked at The Broughton Arms, though. Even when you weren’t working, the thought would occur to you every so often as you sat in the sun – “I wonder how brutal the shift is today,” you’d say to yourself, as you tried to enjoy your cold beer in the sun. You became conditioned to fear the sun. Our relationship was forged in that unique feat. I’m happy to say that I have recovered from this disorder now, and I’m sure Drew has too.

The second reason that the canal walk is nostalgic for me is that we used to go that way to get to Drew’s house when we were younger. His parents have a holiday home in Europe so would go away most summers. Drew’s free houses ended up having quite the reputation and we all looked forward to them all year. We used to hang around playing video games and drinking, with some of us practically moving in for the period. He had a miniature schnauzer at the time called Hugo. I’ve heard a trope that some dogs look like their owners – I feel like this was most true of Hugo and Drew’s dad, Harry. It’s hard to put your finger on why, but I’m going to attempt to describe it (probably at my own peril)… They both initially look quite stern and serious, yet as soon as you have spent 5 minutes around them you realise that they are anything but… I can’t wait to see Harry again and see what he thinks of that. Anyway. Hugo must have had no idea what was going on during those free houses – suddenly having a house full of strangers who never seemed to leave. It was great fun, though, and he used to get involved in it. One time, he was standing staring at himself in the pond outside, I assume pondering his existence like all normal canines do when they see their reflection in the water. I went to jokingly nudge him, but the wooden floor was wet and he actually slipped in. I’ve never lived it down, and Drew still frequently brings it up. The dog was fine, perhaps a little traumatised. I think that experience made him a better man. I have witnessed a few of our friends get in that pond before and they didn’t need pushing, so that is probably more worrying.

Adam, Me and Hugo the Dog (A Very Bad Quality Picture from a Long Time Ago)

There was another time that we were at our friend Ben’s house drinking when we were about 18. For some reason, someone had brought some hair clippers with them and everyone was threatening to cut each other’s hair. As people got more intoxicated and lowered their inhibitions, there were more and more volunteers. Drew was not one of them. He resoundingly stated that no one was going anywhere near his hair. A bit later on in the night, Drew left the party to go and have a serious chat with his girlfriend at the time. They hadn’t been getting on very well, and things were on the rocks. Drew’s always worn his heart on his sleeve and can be quite an emotional guy, so we were expecting this situation to end very badly. He was quite drunk when he left, and he took a few beers with him for company. The next time I saw him was when he literally fell into Ben’s bedroom shouting “shave me” hysterically. It seemed he had decided that the best way to numb his emotional pain was to allow one of his drunk friends to give him a new haircut… Perfect! In case you’re wondering, none of us were barbers, none of us had desires to be barbers, and no one had each other’s best interests in mind when offering to cut their hair. The result is the below picture taken after a few people had fallen victim to the clippers. I have it marked in my favourites on my phone and frequently look at it when I need a cheap laugh at other people’s expense. It is a legendary photo. Drew looks particularly absent-minded in it.

Left to Right – Luke, Steve, Dave and Drew – All Sporting Some Terrible Haircuts

He has come a long way since those days. The guy owns his own record label, has an amazing girlfriend who he has been with for a long time and is now running his first half marathon. He’s even got himself a normal-looking haircut, but it’s debatable whether that is a positive or not.

Sometimes you meet people that are so unique in the world that you know you’ll never meet someone else like them. Drew is one of the best examples of that I know. Every time I see him, he says at least one thing which completely blindsides me and leaves me hysterical with laughter. He has quite a reputation among my friendship group for his choice of diction. The way he phrases things is always genius and he delivers the words with passionate vigour. It’s extremely charming of him to choose to run his event for Pancreatic Cancer UK and I know he appreciates every penny donated to the cause, as do I. If you can donate anything and want to help beat this absolute shit-wanker of a cancer, please do.

Love you very much Drew – I’ll be there to cheer you over the finish line on the day!

Dan Ran 40 for Pan Can

Lucy and Me in Bed on a Bad Chemotherapy Day

The Run 40 for Pancreatic Cancer UK challenge has officially finished! My Just Giving page is still up here if you are yet to donate and would like to. I thought I’d write some reflections now that the challenge is over and use all of the positive adjectives to describe the amazing, fantastic, incredible, awesome, wonderful, tremendous amount of support that the campaign received.

As I write this, the campaign is on £6,653. The original goal of the campaign was £250. I hoped to raise more than that original goal, but I never imagined it would get as high as it is now. I’ve seen so many names in the donations that I recognise from various times throughout my life; people in my year at school, people I used to work with, friends of friends I have only met a couple of times. There have also been an astonishing amount of donations from names I don’t recognise and many from the secret ‘anonymous’ society. My siblings have been touched by some of the donations they have seen from their old colleagues and beyond. It is truly amazing how far it seemed to reach and how generous everyone has been. Thank you so much for all the donations and for making it feel so special for me.

The support was so great that I was contacted by the local paper, The Chronicle Series, who wanted to write an article about it. Unfortunately, I never saw that article come to fruition and have not heard from the journalist who contacted me. I haven’t chased him either; I just figured it would come out eventually in the month of February. It is perhaps too late to expect to see anything now, and I fear I may never get my newspaper clipping to frame and put on the wall… I’ll have to think of another scheme now, damn it.

A local clothes shop called Wall Street kindly put up information about the campaign in their window. They also made flyers which they were putting in shoppers’ bags. This was all done without any prompting from us. The owner asked my mum if it would be useful, and then they did all of the work to create, print and distribute the materials. Every time I walk past the shop, I see my face in the window, and I awkwardly try not to look for too long. It feels like I’m being vain just by doing so, which is probably an incredibly strange reaction to the situation. That was another incredible gesture, though, and one that my mum especially appreciated. She has been shopping there for years and was very touched that they were willing to do this for her, as am I.

The most donations came after the link was shared in a few local Facebook groups by my friends. This sparked a chain reaction of donations and well-wishing messages. I felt like a celebrity as my phone ‘blew up’ with notifications from Just-Giving. For 24 hours, it barely stopped flashing, and the total amount just kept creeping higher and higher. The only person managing to check the donation amounts quicker than my phone could be notified was my mum, who sat reading every donation, every message, and puzzling over every anonymous; she has been absolutely obsessed. I think she could reel off every name and comment by memory now.

On a more general note, the campaign really helped to focus me throughout February. I was always looking towards the next run, planning a new route, fighting harder to get out of bed each day and get out running. I may have underestimated just how much it did for my motivation last month, and it is now only becoming clear as I am in March and struggling to hit the same level. Even during the storms, I managed to get out and run, no matter how little I wanted to. I did also get fortunate with the chemotherapy cycles for most of February. It was only towards the end that I really struggled to get out running because of the chemotherapy. Luckily, I had already completed the distance by this point and was only aiming for more for my own ego. I wanted to get the total to 60 miles, but I only managed 53.64. This was mainly down to a bad final week where I struggled to do anything; the 2 runs I did manage were some of the hardest I remember in my life. On my final run in February, a 5K with my sister Josie, I had to walk about 3 times and felt like I was going to pass out at one point. I was not in good shape from the chemotherapy. Luckily, I ran yesterday, and I seem to have recovered from the worst of it now, but it has taken a long time compared to my ‘normal’ cycle.

Now that the campaign is over, I need to find something else to keep me going. If you read this blog regularly, you likely know that this is a tough week for me. Tomorrow I will receive the results from the CT scan I had on Monday. It will be the first update I have had on the tumour since November, and when I find out if the chemotherapy is working at all, and to what extent. My tumour is locally advanced, meaning it has not spread outside of the pancreas, but it has spread to a major artery. As a result, I cannot undergo surgery. Without surgery, I can’t be cured of the cancer, and it will kill me. Luckily for me, I am very young to have pancreatic cancer. You may be wondering why I used the word ‘lucky’ in that sentence… My youth and fitness mean that my body can take a lot of punishment and still recover relatively quickly. My oncologist warned me that there may be a lot of steps to take to get the tumour in a place where they can do surgery, but that I should be glad that those steps are available to me. Many others are diagnosed at a point where nothing can be done or are at an age where they are too vulnerable to have the full extent of chemotherapy, radiotherapy, nano-knife, and whatever other techniques are required. My age doesn’t guarantee me anything, though. I still may have a long way to go to get surgery, and it may never get to a place where it is possible. Tomorrow, I’ll discuss how the tumour has responded to chemotherapy and the next steps with the oncology team.

So as you can imagine, this isn’t a great week for me to understand how I am feeling about things. I am focusing on getting through tomorrow, then I can try and enjoy my birthday on Saturday (despite being in the hospital for chemotherapy). Next week I can decide what big schemes will keep me busy for the next few months until I finish chemotherapy in May (assuming the scan doesn’t change the treatment plan entirely). I’m hoping to get some more writing work for Pancreatic Cancer Action, and maybe some other charities/organisations, but we’ll see. I’ve also started to work on a few short stories and a book, but the progress on them is slow. I still struggle to actually sit down and just write. The blog has more direct purpose as I write it and know that I will upload it for consumption. I’m still not in a place where I feel any of the short stories, or potentially even my book, is for a bigger ‘purpose’. If I knew it would be published and that people would be interested in it, I may feel more motivated to do large writing sessions. Unfortunately, I haven’t convinced myself that any of it is for a purpose right now. I know that the right mindset is not to do it for any purpose, but just do it because I enjoy writing, which I do. I’m still new to writing, though, and it is easier to write things where you get quick and direct feedback from people reading. It’s all a process and I’m getting somewhere with it, I hope.

One last thank you to everyone who has donated and followed the progress on the Just Giving page. If there is anyone else you think may donate, please share the link with them. It’ll be open for a few more weeks yet! Today’s song is appropriately titled ‘Endorphins’ as that’s the best part of exercising – those juicy endorphins. The song also has quite a mix of sombre sounding lyrics whilst also being somewhat upbeat, a nice analogy of how my mood seems to be this week.

Run 40 for Pan Can? Completed It, Mate

Finishing the 40 with my younger brother Alfie

I hit the 40-mile mark in the Run 40 in February challenge yesterday. After running 3.5 miles with my brother Alfie, my total distance now sits at 41 miles. The total will also be much higher by the time February is over. True, I did upload a single walk of 2 miles, so my running total is 39 miles, but I also said that I could upload walks in week 1 of the cycle if I felt too unwell to run. I feel good that I only needed to do this once. It feels like a good time to reflect on the challenge and things more generally.

It has felt excellent challenging myself again. I’m so used to being in a cycle of entering fitness events, training for fitness events, recovering from fitness events that I did really feel the loss of it when I fell ill. Then came the weeks in hospital, the drip-feeding of worsening information about the diagnosis, and the eventual life-shattering diagnosis itself. When I think about it all now, it is striking how quickly things changed and how different my life is now. But humans are seriously adaptable creatures, and we mostly seem able to cope with change, no matter how drastic. In this situation, I didn’t have any other option.

I’ve always spent a lot of time and mental effort dealing with existentialism in some form. In this blog, I’ve spoken about this in various posts. When I was younger, it was mostly me obsessively worrying about my family and whether they were worried about things like death. Once I started dropping this obsessive worry-ception over death, it materialised more in me worrying that they may experience a lot of pain in their life because of something like a, I dunno, cancer diagnosis, to pluck a situation from thin air. These macro-worries were always peppered in with more micro-worries about just about anything in my daily life; whether I was liked by my peers, whether I’d ever find a good career, whether I’d find a stable relationship that I actually held together, etc etc. When I was 20, I got the below lyrics tattooed on my back; they demonstrate my slight obsession with death around this time. The lyrics are from a song called ‘Dirt’ by a punk band called The Swellers.

“No casket please

I’ll rot out with the leaves

No clothes for me to wear

The dirt won’t care”

‘Dirt’ by The Swellers; I got these lyrics tattooed on my back when I was 20

I’m glad to say that by my early to mid-’20s, I’d managed to drop a lot of this attitude. I learnt that it was unproductive. There is only so much you can worry about in life, and the worry itself does nothing to improve the situation. If there is something you can do to combat your concerns, then do it. If there is nothing you can logically do to combat the worry, then inject some reason to counter that voice in your head when it starts reeling off its negative script. It takes time, but it helps. I don’t regret the tattoo on my back. Overall, the song contains a good message – the lead singer is accepting death and telling his family to process it positively, as the final few lines demonstrate. It is written in the form of a note to them, and I have always found it a fascinating song lyrically. It won’t be to everyone taste musically, though, I concede.

“And I know,

There’s no headstone where I’m lying.

So where do you go when you’re crying?

Just hold on to a memory of me

Inside of your heart always.”

‘Dirt’ by The Swellers – the last lines of the song

The cancer diagnosis has provided me with an opportunity to test my stoicism. My soon-to-be mother-in-law Kathy has provided me with a book on the great Stoics called The Daily Stoic, which I mention in my blog post 100 to 1. I’d really recommend it if you are looking for some calming wisdom in life. It has a page per day of the year and provides a quote of wisdom from an ancient philosopher and then a breakdown by the author. The idea is that you read the prescribed wisdom every day, bestowing it upon yourself and helping to apply it in your everyday life. It never takes more than 5 minutes to read, and some days I am genuinely taken aback by the words on the page. They really make you think, and some of them are really practical advice that can help you deal with day to day situations. Today’s page (February 17th) is titled ‘The Enemy of Happiness’ and contains a quote from Epictetus. To summarise its central point – happiness cannot co-exist with a yearning for more. It discusses conditional happiness – an example being someone who says to themselves, ‘I’ll be happy when I get paid x amount a year’. They state that these goals ruin your chances of being happy now. It’s a strong point, and I am most definitely guilty of thinking that some future event will be the thing that makes me fully happy. There’s always more we can work on to improve ourselves, though, so I’m not going to beat myself up too badly for it.

Although I think I was doing a good job of staying positive before I started running again, it has improved things to a large extent. Despite the limitations placed on me by the chemotherapy, I managed to feel almost normal in week 2 of the cycle. The oncologist told me that steady exercise would help ease the symptoms, and it really has in my case. It hasn’t lessened the ulcers, but that is a small price to pay given the accounts of others that I have heard who are also on the Folfirinox chemotherapy. It is a powerful drug, and I have listened to others talk of extreme fatigue, complete loss of appetite and regular vomiting. I’ve experienced some of these symptoms to an extent, especially chronic fatigue, but they never last very long. Since starting to run again, I can confidently say I am experiencing them less. My energy levels feel good, even towards the end of week 1.

Even ignoring the benefits I feel in terms of my response to the chemotherapy drugs, it is just nice to be achieving things again. I am no longer working, so I do not experience the highs and lows of challenging myself at work. Pushing myself physically feels like one of the last pillars of independence I actually have. Everything else important in my life is being managed by other people more adept in those areas – specifically, the oncology team dealing with my case. I’m not sure that what I have been doing always classifies as ‘steady exercise’, but when I spoke to other survivors at a Pancreatic Cancer UK support group session, they told me to do whatever felt normal for me. Pushing myself physically feels normal for me, so I am trying to balance accepting that my body’s ability is currently limited and doing something I know is both physically and mentally good for me.

In terms of the fundraising itself, I only have everyone who has donated, shared and taken an interest to thank. It is astonishing how much has been raised. I know I say that all the time, but I started out with a goal of £250. I thought I would achieve this, but I did not believe it would get anywhere near as high as £6,000. It’s a mind-boggling amount of money to see on the page. The donations have slowed down now, but that was to be expected. The page can be accessed here if you still want to donate or share. My biggest push came after the page was shared by my friend in a local Facebook group. It shows that sharing on social media really can make a huge difference, so if you can think of anywhere to share it where people may be interested, please do. I’ll continue to eat away at the miles and see how far we can push this thing!

Ulcers, Ulcers, Ulcers

The Chemotherapy Diaries

The last Chemotherapy Diaries post had a sombre feel, didn’t it? I’m glad to report that I did cheer up. A few things helped along the way. My best friend Luke made the journey down from Huddersfield to visit me on Friday. I had a few friends come up from London too. The fantastic power-couple Robbie and Norah came to stay with me all weekend, and then Gary and Amy came to visit for the day on Saturday. It was a busy weekend, which was nice. I think I’ve perfected the Pineapple Upside Down cake finally; the latest one was delicious. It all helped take my mind off the annoying and persisting symptoms of chemotherapy.

Me, Amy and Gary out for lunch on Saturday

Week 1 of the cycle was challenging. For the first few days, I was getting a lot of sickness and struggling to sleep, despite being knackered. My body felt too hot all the time, and I kept getting a strange taste in my mouth after eating. It was a bit metallic, a bit something else disgusting that I can’t quite define. There is quite a strange thing that happens with me when I feel sick on chemotherapy. The anti-sickness tablet that they give you at the hospital is apparently quite strong; I think it works well to stop me from actually vomiting, but my body still wants to react to the things going on with it. As a result, I get these strange hiccup type reactions after eating where I worry I am about to throw up but never do. It is always a disconcerting experience, I’m sure it’ll catch me off guard, and I will vomit eventually.

Those symptoms seemed to die down by about Thursday. Just in time for the mouth ulcers and the swollen tongue to waltz back into the frame. Why, oh why is this becoming a regular thing? I feel bad complaining about them because they sound like a minor thing, but it is anything but minor when it affects my ability to do trivial activities such as eat, speak and apparently breathe. “How has it affected your ability to breathe?” I hear you ask. Well, cynic, prepare yourself for a lesson in chemotherapy in the form of a story.

My best friend Luke surprised me with this Homebound jumper, the band that inspired the blog’s name

I went to the dentist to have a hygiene appointment on Friday afternoon. Shortly after arriving, the dentist beckoned me into her office from the waiting room.

“Any health issues you need to inform me of?” Quite an innocent question, usually.

“Well, I have pancreatic cancer and am on chemotherapy. My mouth is currently full of ulcers,” I said, only just realising that this may be a problem when attending a dentist appointment consisting of pocky tools being forced in your mouth at all sorts of awkward angles. She was looking concerned.

“Has your oncology team told you that you’re allowed to attend dentist appointments? It’s common that they tell you to avoid them whilst on chemotherapy.” She knew her stuff. I was in trouble.

“Well, they haven’t told me not to attend dental appointments.” I felt stupid saying it, which probably means it was a very stupid thing to say. I assume that subjects are usually advised not to attend dental appointments on chemotherapy for a few reasons. Firstly, the most significant risk whilst on chemotherapy is getting an infection. The drugs significantly impact your bodies ability to fight them, and you find yourself getting ill much more regularly. For example, my throat is constantly hurting at the minute, especially in week 1 of the cycle. A simple infection can be fatal on chemotherapy. Secondly, the aforementioned ulcers in your mouth, making a routine hygiene appointment feel like 30 minutes in Guantanamo Bay. I am assuming here, though. They seem like logical assumptions to me. I tried to move the conversation on quickly, so she didn’t have a chance to defer the appointment. I really wanted my teeth cleaned as I had been using Corsodyl mouthwash regularly and had staining on my teeth as a result. What I hadn’t realised about Corsodyl was that it is a very strong mouthwash and shouldn’t be used regularly. The dentist had informed me of this a few months ago in another appointment when I had complained that my teeth didn’t look as white as they used to. I had since stopped using it, but the stains remained.

She agreed to go ahead anyway but would not do as deep a clean as usual. Upon inspecting my mouth, she conceded that it was very swollen in a few places. I told her that I would still like to go ahead, and we did. It was bloody painful. Each time there was a stab of pain, I reminded myself that she had warned me and that I’d been the one playing big boy, saying it was fine. My teeth look lovely now, but I fought for it.

Obviously, the appointment irritated my mouth even more. I should have known that the trained professional would be a more reliable source of information than the idiot who wanted his teeth to look slightly nicer against all warnings. That night, I cleaned my teeth as usual. The toothpaste was burning my mouth, but this wasn’t a new thing for me at the minute. My tongue is regularly swollen to this extent during the first weekend after chemotherapy. However, this time, it was as if I had poured chilli oil over my toothbrush instead of water, then started brushing directly on my tongue. I quickly stopped when I realised, but it was too late. What then happened for 10 minutes was that every time I breathed in, my tongue felt like it had been stripped of skin and dipped in vinegar. I sat in bed, trying not to breathe for a while. The ulcers were already making it painful to talk and eat; why wouldn’t they make it painful to just, exist?

Saturday night it was my friend Finch’s 30th birthday party. He hired a room at the back of a nice looking pub/restaurant. I’m not sure how many people were invited; I think it was about 50, maybe slightly more. I said I’d go along for the first hour or so. Covid is still a big problem for me because it can make me really ill and because it will delay my treatment schedule if I catch it. I wanted to go along for a bit, though. It’s the first large social event I have been to since being diagnosed, and I wanted to see how it felt. Unfortunately, I think it proved that it is difficult to attend such things on chemotherapy. Not only because of the physical symptoms but also because of the mental side of things. My mind was playing devil’s advocate as I stood in the busy room.

Firstly, there was the fact that I felt a little out of place. I have cancer, and I’m on chemotherapy; they aren’t images you usually associate with a bar full of people having fun and getting hammered. Then there is the fact that I felt like a social pariah who had forgotten how to have a normal conversation. People don’t really want to talk about cancer when they’re trying to have fun, and I don’t really want them to have to either. I tried to avoid the topic, but I had a sense of being the elephant in the room at times, and I didn’t really enjoy it. Of course, part of this is me projecting. I’m worried that people are worried about how to interact with me, which affects my behaviour. It doesn’t help that we have also spent 2 years in and out of lockdowns, so everyone’s social lives have been restrained for a while now. We’re all out of practice with seeing people and enjoying ourselves.

I left the party after 2 hours, but I spent the last hour standing outside in the smoking area, in the rain and the cold. I was getting paranoid about Covid, and the room was very loud and warm. My throat was hurting, and I was starting to feel nauseous. Outside was nice, and I spent it catching up with a few people I hadn’t seen in a long time, alongside hanging out with friends and family that were also there. I’m glad I went, but I think it’s a lesson learnt about where the boundaries are in my current situation.

When I got home, I checked my email and was surprised to read that the short story I submitted to a competition had been shortlisted, meaning it will be published! It may even be 1 of the 3 winners they are selecting, but they haven’t announced them yet. The email stated that there had been over 700 entries. It felt really good, and it’s motivated me to write a lot more outside of the blog. I started writing a short novel adaptation of The Road to Diagnosis today that I may send to publishers, but we’ll see how it turns out.

The Run 40 campaign has also had a fantastic week. In fact, that is a bit of an understatement. The total raised is over £6,000 now. It is totally unbelievable. I’ve run 38 of the 40 miles, so I should be able to get in a final 2 before the end of February… I’ve pushed myself a lot recently with it. The donations keep humbling me, and I feel that the only thing I can do to show my appreciation is to push harder on the miles. I’ve also been contacted by the local paper, The Chronicle, who are writing a piece on the fundraiser. I’ll share it on here as soon as it has been released. It will be interesting to see if it yields more donations for the campaign too. Hopefully, it does!

I’m debating whether I should raise the target again or whether I just take the win and accept anything above it as an incredible bonus. My friend Will recently donated £30 more (he had already donated £20 a while ago) to the fundraiser. He saw it was near the target, only realising afterwards that I keep increasing it as it is achieved. Sorry for misleading you, Will, but it is going to a good cause, so stop being a tight arse and donate some more when I inevitably raise it again, please! But on a more serious note, thank you to everyone who has donated and made it such a special fundraiser! I’ve been contacted by Pancreatic Cancer UK a few times, and they are astounded at the amount raised, as am I.

As of today, the mouth ulcers seem to have finally cleared up, and I’m feeling good. I randomly got a nosebleed today, which is very uncommon for me. I can’t remember if it has ever happened to me before, actually, but I assume it must have at some point. Earlier today, as I set out on my 5-mile run, I had a car beep at me, with the driver enthusiastically waving. I couldn’t see who it was as there was a glare on their windscreen. I waved back and smiled, thinking it may have been an encouraging stranger who had seen me in one of the shared Facebook posts. Then, this afternoon, I received a lovely card through the door informing me that it was Gaywin Dayson, a keen reader of the blog and mum of my friend Em. What a lovely, lovely surprise. Thank you so much, Gaywin – I love the card very much. It will be going on my card wall alongside many other charming cards sent to me over the past few months.

Gaywin’s card to me, featuring little Lucy in a red jumper

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!

World Cancer Day

It’s World Cancer Day today, and I have an awful confession. I didn’t know it was World Cancer Day until I woke up this morning and looked at Twitter. A year ago, on February 4th, I was in the hospital for an MRI scan of my hip. I only know this because I scrolled back in my photos app on my phone to see if there was evidence of what I was doing last World Cancer Day. I found a picture of me in my hospital gown that I had sent to my family Whatsapp group. It is perhaps a twist of fate that I was in a hospital because it certainly wasn’t a venue I often frequented at that time. The point is this, I was blissfully unaware of World Cancer Day, despite being in a hospital. Perhaps a notification flashed up on my phone about it from a major news outlet; maybe I heard a conversation between 2 people in the street about it. If I was made aware of it at any point, it didn’t stick. Not that year and not any other year. The same way that I used to purposefully scroll past videos of slaughterhouse conditions, where KFC’s main manufacturers are caught dipping live chickens in tar to remove their feathers. Watching the videos forced me to think about my complicity in such events because KFC was my “hangover cure”. Eventually, I decided to go vegetarian because I wasn’t comfortable with such things. Now, I have been forced to address my own ignorance over cancer.

The image I found on my phone of me before an MRI scan on my hip – February 4th 2021

It is easy to be purposefully ignorant of issues that you do not class as ‘your’ issue. Perhaps it is even wise as you cannot burden yourself with every issue which may impact you in your life. You’d have so much anxiety that you would likely stop trying to navigate the big, dangerous world and would stay locked safely indoors, avoiding anything and everything that may threaten you. The thing with cancer is, you seem to be in the minority if you have no firsthand experience of the damage that it causes. My first proper experience of it was when a good friend in school’s brother tragically died of cancer when he was 17, after years of battling the disease. I saw flashes of the damage this caused but not more than that. I remember being at my friend’s 18th birthday party years after his brother had died. My friend and another brother of his were crying, drinking Jack Daniels in his memory; they said it was his favourite drink.

Despite this experience, I still managed to be ignorant of the disease. I heard the odd story about someone else’s parent, grandparent, sometimes a sibling, but it always felt far away from me. There was seldom a case that hit close to home. The Cancer Research UK adverts went over my head, generally. That isn’t to say I ignored them, but I felt the sadness as I watched the advert, then quickly moved on to the next thing. It didn’t stick with me. Even when I ran a marathon for Cancer Research UK in 2018, I read the emails they sent and contemplated the ‘1 in 2 of us will get cancer in our lifetime’ statistic, but it all still felt far from me. I felt like I was raising money for a good cause, but it didn’t feel like my cause. I didn’t have a particular name to put on a t-shirt or an ‘In memory of…’ to write on social media. That’s ok, I still raised a good amount of money for them, but I felt like a valiant philanthropist raising money for an ailment that didn’t even affect me.

After being diagnosed with cancer, something changed. Suddenly, I started seeing cancer everywhere and the ‘1 in 2’ statistic started feeling more real. I felt like I couldn’t go anywhere without hearing more stories about the damage cancer has caused. Friends telling me that both of their grandparents died of a particular cancer, that their mum had it and survived it, and that they have to be screened for it every year and are waiting for the time that it comes back positive. I remember reading a book a while ago that discussed how you learn about a topic and ‘raise your consciousness’ of the world. Once this happens, you struggle to go back to your old consciousness. It happened to me when I read a book about the anatomy of birds. Suddenly, I started noticing that birds of prey fly around our motorways and train tracks everywhere you go in the UK. Now, whenever I drive somewhere or I’m on a train, I spend time looking for them and observing them. My consciousness was raised to their presence in the world, just as it has now been raised to the damage that cancer causes.

Of course, the reality is that something didn’t ‘change’ per se. After being diagnosed with cancer, I had a personal stake in it, and it was a catalyst for others to share their stories with me. It is a major reason why I started the blog. It feels like everyone has at least 1 story of cancer and how it has negatively impacted that individual or a very close relation. By writing the blog and sharing my experience, I hoped it would encourage others to talk more about their experience. It can feel like you are a fun sponge discussing such issues, but these stories are what make us human. They encapsulate the struggle we all feel in life – whether struggling with an awkward colleague, a changing relationship with a close friend or a life-threatening illness. Any situation can feel world-ending in a particular context, with a certain mindset. Cancer has forced me to change so many of my behaviours and re-evaluate my old priorities. It has afforded me the luxury of focusing on 1 thing above all else – staying alive.

My experience of the struggle against cancer is this… It is going to bed feeling positive, only to wake up at 4am after having a horrible dream and only having the dark to contemplate it with. It is having a good couple of days where you feel normal, only to catch yourself in the mirror after a shower and seeing the chemotherapy port under your chest, reminding you that things aren’t normal. It is seeing a headline about a celebrity who has died at an unusually young age, 30s, 40s or even 50s, and trying to guess what type of cancer they had as I open up the article; sometimes it says pancreatic and it feels even more soul-crushing. It is having a pint with friends in the evening at a restaurant, only to reflect the next day and wonder if my behaviour is careless, if that pint will be why my next scan tells me that my cancer has spread. It is enjoying the minutes I spend with my family, fiancee and puppy, only to worry that it may be the last year, 2 years, 3 years that I get to spend with them. It is walking into a health food shop and asking the owner if they sell organic milk, only to end up in a conversation about my cancer; being told that ‘alternative research’ has shown that milk makes cancer cells grow quickly and that all of the specialists at The Christie, where I am receiving treatment, are signed up to Big Pharma’s ‘agenda’. It is googling statistics only to try and forget them, worrying about diet constantly, wondering if you’re doing the right thing trying to exercise when on chemotherapy, or if you are over-exerting yourself. Would that make cancer grow faster? The internet will tell you yes, no, maybe and everything in between.

A Chemotherapy Port – it sits under the skin and is linked to a line that goes into the vein; the chemotherapy is delivered via the port

The problem is that my experience of cancer is also this… it is finding a reason to write, something that I have always wanted to do but never had any confidence that I had something worthwhile to say. It is engaging with incredible people from all over the world, all involved in a genuine struggle against cancer, whether it is themselves or a close family member. It is learning to view the world completely differently, recognising that there is only so much you can control and that there is a huge amount of comfort in that lesson. It is proving to myself that I am strong enough to withstand what life throws at me – the tests, the procedures and the chemotherapy. It is getting engaged and spending more time with my parents than I ever would have been able to again. It is having the most genuine conversations with my friends, family and beyond, where we talk about the good, bad and the ugly. It is reconnecting with people from throughout my life, receiving heartfelt cards, messages and even presents.

So, I’m torn, really. I don’t want to sing cancer’s praises, but I also don’t want to spend my life berating it and talking about how miserable it has made my life because it hasn’t. I have it better than people did even a decade ago with my cancer. Last week I learnt that the chemotherapy I am on was only in trials in 2015, so the positive effect it has had on survival rates may not have even been recorded yet. But at any one time, the current sufferers of cancer carry the cross for future victims, just as the past sufferers carried the cross that has allowed the current treatment methods. The other day, I saw a post on Twitter by a woman with a stage 4 diagnosis of pancreatic cancer currently being treated under a clinical trial. She said that she asked the nurse if it was normal to have rashes all over her body and how long they would last, to which the nurse responded, “well, that’s what you’re on the trial for. You’re going to help us answer those questions.” It is a stark reminder that before things get better, they often get worse. The scientific method requires subjects, and those subjects reveal the true potential (and limitations) of a new treatment. By the time a new treatment is proven and put into use, it has been built on blood, sweat and tears. I remind myself of that when I am sitting on the chemotherapy ward, suffering through 5 and a half hours of a potent form of chemotherapy. 10 years ago, it may not have been a specialist form of chemotherapy drug that targets specific cancer cells; it would have been a more generic, unsophisticated form of chemotherapy. It would have sucked a whole lot more.

I am nearly at the end of my soapbox speech. Thank you for sticking with it this long. If you are wondering what you can do as a mere pedestrian in the struggle against cancer – raise money for charities, offer support to friends who are suffering from a diagnosis or whose families are. You can make a massive difference in the world by just being there for your friends in times of hardship, and that will make you a better person. My personal ask to you is this, share the blog and my Run 40 fundraiser on social media and tell everyone that it is in aid of World Cancer Day. Force the issue with the World because it has a tendency to turn a blind eye to important issues that may eventually impact it, just as I used to.

A Pain in the Mouth

The Chemotherapy Diaries

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.

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

Run 40 for Pancreatic Cancer Begins

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.