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

At My Best Friend’s Wedding – 08.04.23

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Marathoner

Greg at the Iron Man World Championships

My slight insomnia seems more determined than ever right now, so I find myself starting writing this post at 00:30 on Monday morning. I spent Sunday attempting to support my eldest sister Becky as she ran the London marathon. My ‘attempt’ to support her wasn’t because I was not indeed supporting her through my thoughts and words, but because my physical attendance on the day was cut short due to some fairly routine stomach problems. It’s a shame as I came down to London this weekend specifically to support her on her big day, but after only managing to see her once at around the 13 mile mark, my stomach problems kicked in. I tried to persevere, but sometimes these issues aren’t down to perseverance, and I didn’t want to embarrass myself in central London, in front of my family and my new wife. That really would have been a test of our vows. ‘Bowels testing the vows’. What a horrible yet intriguing sentence. Perhaps it’d make a good play. Someone should write it.

Becky hasn’t run a marathon before and judging by her first message after finishing, I’m not sure she’ll be rushing to do another one. “Fuck am I ever doing that again,” read her first message in our family WhatsApp group. My dad isn’t a fan of swearing, so she must have really meant it. As we’ve gotten older, we’ve gotten lax with our swearing around our dad, but you could tell she really meant those words; it wasn’t just inflammatory for the sake of winding up my now retired dad (he’s finally officially a pensioner as of the close of business last Friday, despite actually taking his pension a few years ago).

Whether she does one again or not, it’s a huge achievement. I know people think every Godley has some natural trait which makes them able to do marathons at the drop of a hat, but it really isn’t true. Some of us go to pretty extreme lengths with our love of exercise – my brother, Greg, goes to extremely extreme extremes, but we’ll come back to that later. Becky isn’t typically one of them, though. She enjoys running to keep fit, but also enjoys actually having free time where she isn’t training. She also probably enjoys occasionally dressing up, having a few too many drinks and getting blisters from her nicer looking shoes, as opposed to already having them from running too many miles, too many times and over too many weekends. I hope she will get to indulge in a few of these now that the marathon is out of the way. She has earned it.

In all seriousness, she really isn’t one of the Godley’s who loves the punishment that comes with these more extreme events. Or she isn’t historically, anyway. Who knows where this will take her now… I know that people will think I’m being modest here, as I have completed quite a few marathons and even more ultramarathons, but I really do put myself in the same category as her in terms of natural ability. I don’t have a lot of natural ability with running, and I think she feels the same way. Any skill I had with running came from sheer determination. I just kept doing it and doing it and doing it, never getting loads faster, but managing to go a lot further. Each time I entered a new marathon, I told myself that this would be the one where I would do an impressive time, but it never really happened. At my first ever marathon, I finished with a time of 3hr 47, and I felt relatively happy, but I thought I could do better. The only other road marathon I completed was the Brighton marathon, and a combination of hot weather and having pancreatic cancer, but not knowing that I had pancreatic cancer, meant I finished with a less-than-impressive 4hr 3. The only thing that I consider quite impressive in my speed repertoire is my half marathon PB of 1hr 38, but this is still pretty slow for someone who trained as hard as I did. Ultramarathons were always more my thing – I could dig deep over distance, and that seemed to give me an edge. But anyway, this isn’t meant to be about me…

Becky may not love the punishment of a tough training schedule, and she may not have the natural speed and agility that my dad had, but she’s ran a marathon. In many ways, it is more impressive to see someone finish a marathon who is not a seasoned marathoner, than it is to watch someone complete their 40th marathon that year. The grit and determination that she showed to get over that finish line is admirable and inspiring. The fact that she also did the marathon in aid of The Christie, the cancer-specialist hospital that provide my oncology care and who have almost definitely extended my life considerably, if not actually saved it from the hands of pancreatic cancer, makes it even more special.

My surgeon told me that most oncology teams in the country, if not the world, would have told me that nothing further could be done based on my diagnosis (stage 3 pancreatic cancer, with an artery fully enclosed by the tumour) and the images produced by the CT scan post-chemotherapy. My specialist at The Christie recognises the limitations of these scans, however, and is an incredibly forward-thinking individual when it comes to the treatment of pancreatic cancer. He is an example of the excellence that The Christie has become associated with. That excellence attracts excellence, and that is how he became associated with my surgeon, Mr Nicola de´ Liguori. Together, their pioneering approach to treating pancreatic cancer, led to the full removal of the tumour, against all of the odds.

Where others would have accepted defeat, they pioneered an approach of calculated risk – daring to hope that by taking on that risk in major surgery, they might be able to generate a better result for me. They did, and I can’t thank them enough for it. Mr de´ Liguori specifically requested that I name him in my blog posts, as he wants to encourage this type of approach more often when treating pancreatic cancer. I’m unsure about my oncologist, and whether he would want me to speak about him by name, so I won’t name him specifically. Mr de´ Liguori has seen more people approaching him for a second opinion on scan results, and he wants this to continue. Many people don’t even realise that one can survive without a pancreas. My brother Freddie is the most recent person to experience this, as he told a friend in the pub that his brother had recently had his entire pancreas removed. “You must be wrong, Freddie. You can’t live without a pancreas,” his friend responded. Freddie then wondered whether he had got it wrong, or if I had even gotten it wrong and had misunderstood what had occurred in the surgery. Neither of us were wrong, though. It just isn’t common.

There are probably a lot of reasons that a total pancreatectomy is uncommon – sometimes the tumour is too established, and it wouldn’t save the patient’s life. Sometimes the cancer has already spread. I’ve seen it sighted online that it is the huge lifestyle changes post-surgery, with the patient being diabetic and needing enzyme replacement for life, that makes a total pancreatectomy an unattractive option. This last one intimidated me for weeks after the surgery, but I feel very differently about it now. The lifestyle changes are immaterial if it saves your life – I am proof of that; you can adapt very quickly, and all of the lifestyle changes just become normal. Far better than just dying. There are almost undoubtedly many cases where such an approach could save a patient’s life, or give them more valuable years. I’m lucky enough to have received treatment at two world-class hospitals, The Christie and Manchester Royal Infirmary. I’m about to start chemotherapy back at The Christie in a few weeks, and I’m extremely glad to be back under their care for what will hopefully be the last phase of my treatment for cancer.

Becky is just under £30 away from hitting her fundraising target, and it would mean the world to her if you could help push her over that goal. You can donate here if you are willing and able.

Becky Seeming a Little Delirious

My brother Greg seems to have far more natural ability in terms of speed and stamina than Becky and me. He gets that from my dad. I put myself far more in my mother’s camp – a person who has run a marathon in her day, and even did a few trail ultra marathons, but who did not indulge in a running schedule totalling an average of over 100 miles a week, acting like it was totally normal like my dad did when he was in his 20’s. Greg is definitely following in my dad’s footsteps. He may have even created his own footsteps on the path to self-damnation with his latest series of events, though.

In the past few weeks, Greg has challenged himself to 3 separate events. He has cycled from Inverness to Preston, done a double Iron Man (where you do twice the distance of the swim, bike and run) and he is currently in Hawaii to compete in the Iron Man world championship, after qualifying for his age category. I don’t really need to speak too much more about it all – the level of exercise that Greg is now engaged in is utterly ridiculous. There is a bittersweet element to watching him challenge himself in this way for me – I never really got into the Iron Man stuff, but we used to do a lot of ultra marathons together. I hope to get back to a place where we can do this together again, but I fear that I will forever be slowing him down now. Perhaps he needs slowing down a little bit, though.

Greg is raising money for Pancreatic Cancer Action, a charity who have helped me out a lot since being diagnosed. Their founder, Ali Stunt, is a 15+ year survivor of pancreatic cancer; that is not something you see very often. It would be easy to chalk this down to ‘luck’, but you start learning that there is more to these things than simple luck. Her determination to help others resulted in her setting up her charity and the work they do is so incredibly important to people like me. She has helped me out immensely throughout my treatment and continues to help me out now. I’m so grateful to her and her team for everything the have done for me, and am so happy that Greg has chosen to raise money for them.

Greg is a couple of hundred away from reaching his target – you can donate here if you would like to. The world championships are happening on Thursday in Hawaii, so be sure to check out the Just Giving page to find out how Greg does in the event.

Race Day: Anna & Sophie vs 13.1 Miles

Sporting Their Christie Tops!

The day that Anna has been dreading had arrived. Race Day. Sunday, May 22nd – Manchester. The stage was set for her first ever half marathon. Sleepless nights, despairing days. “I hate running,” she would say to herself as she laced up her running shoes for another practice run. Her only motivation to continue doing them was the knowledge that she was raising money for an amazing cause – The Christie, where I receive my cancer treatment. The primary source of solace for her comes in the form of a vow… a vow to never run again once she crosses that finish line. Half marathon achieved; Anna Running Corp dismantled. All aspirations achieved and no interest in drawing up any news ones within the confines of awful running, the worst activity known to man (according to Anna).

With a start time of 8:40, it was an early wakeup. The alarm wailed at 6:00. Anna was up straight away, but I was not so eager. Neither was Lucy. The two of us refused to rise to Anna’s ‘I want to be on time’ game. We performed a dirty protest… the sleeping kind, we aren’t animals. Well, Lucy is, but you get it. By the time we got out of bed, it was 6:30. We had all agreed to leave at 6:45 the evening before. Anna wasn’t impressed.

We left at around 7:00 in the end. The sat-nav kindly informed us that we would be getting there at 7:53. That meant that Anna had plenty of time to meet her partner-in-crime Sophie (who is also Maid of Honour at our wedding) and make their way to the start. Any tension was dispelled – things were going to work out. We decided to bring Lucy the puppy along to see the city. After establishing herself as a beach girl in Whitby, we knew we had a difficult task convincing her that city life is worthy of consideration. It is a mountain that we must climb with her, though, as Anna and I usually live in London in normal life. This cancer malarky led us to move back in with my parents, in the much-smaller town that I grew up in. Lucy was then purchased for me by my lovely family as a surprise gift to help support me through the awful journey. She is now 8 months old and very much likes having a garden to run around in and fields to go walking in. It’s a huge problem as we won’t have either of those things once we’re in London. Also, due to her tiny size, she’s a little scared of cars. There are a lot of cars in London. Lucy won’t approve of any of it if we don’t start trying to convince her now.

Warming Up Against a Bar Window – Totally Normal

We arrived at roughly the time the sat-nav told us we would. Anna jumped out of the car and went to meet Sophie. My mum, dad and I found a parking lot and didn’t question its credentials. There were white lines, other cars and a machine to pay – it seemed legitimate as they come. Unfortunately, it wasn’t legitimate. Or I am assuming it isn’t legitimate. My dad returned from the parking machine and informed us that it cost just over 25 of his well-earnt-British pounds to leave his car on this piece of land for half a day. Now, I wish I could say there is nothing remarkable about this car park which would make it cost such a price but there actually are plenty of things that are remarkable about it. Here are some of the things that the car park did NOT offer for that price, making it remarkable – A barrier, a surface free of crater-sized holes or EVEN CCTV cameras (other than the cameras making sure those who entered and left had paid). Perhaps the fact that Britain has the second most cameras per person in the world, losing the title only to China, makes those who run it think that they don’t need to bother buying their own (stats supplied by random people in the pub and not verified; also the ‘China’ part of that fact may be British government propaganda to make us look better). Or perhaps, the company that own and manage this car park are just a bunch of money-grabbing twats. They can’t even pay someone to clean up the excessive amount of broken glass which was strewn around the place like spilt glitter on a carpet. Remarkably rubbish, but we paid for it. The joke is most definitely on us.

To be fair to the car park company, one of these problems actually seems endemic in the entire city of Manchester – broken glass. I studied for my undergrad in Manchester and lived in the centre of the city in my final year. It has always been the nearest city to my parent’s house, so when I was younger it would be where we’d go to go shopping, see bands live, etc. What I’m getting at is that I’ve spent a lot of time there in my life. Perhaps my memory is getting worse, but I do not remember the city having this much of a problem with broken glass when I frequented its streets. It is EVERYWHERE. I’m wondering if the local council have started trying to charge households for recycling glass or something. There must be some incentive driving people into yeeting their every bottle on a public walkway as opposed to putting it in a bin. It doesn’t even have to be a recycling bin. In fact, you don’t even have to put it in a bin, just don’t actively smash it on a public walkway, turning it into a trap for any innocent dog, child or adult that happens to be strolling down the road, not realising it is punctuated by jagged fragments. As me and my parents made our way to the spectating spot that we had picked out on a map, I feared for Lucy’s paws as we navigated the walkway – more glass fragments than concrete, and decorated with half-eaten food and rubbish. Lucy was a huge fan of the half-eaten food and rubbish, and my mum had to wrestle a couple of chicken bones out of her mouth over the day. Occassionally she’d pick up a bit of a polystyrene case which was left on the floor and proudly run along like she’d won the lottery. Good job shes cute because she’s also absolutely disgusting.

Mum Offering a Supporting Hand – Just Before Mile 2

We saw Anna and Sophie twice at our little viewing point – once just before mile 2 and again around mile 7. They were running side-by-side and were smiling ear-to-ear both times. They were enjoying it, no matter what they claim to the contrary. Both were sporting The Christie shirts, and Sophie even had a temporary tattoo of their logo on her arm. I’m hoping she will consider making it permanent in future but I suspect she won’t. She isn’t that committed to the cause. Despite it being quite overcast as they ran, the weather was proving near-perfect for running, remaining largely warm but with a cool breeze. The two stuck together all the way until the end, and the next time we saw them was on the run into the finish, with approximately 200 meters left to go. We cheered at them as we saw them emerging around the corner, and could see the smiles on their faces widen as they spotted the finish line in front of them. Music was banging, people were cheering and the voice of a woman announcing finishers was ringing out. They had done it. We made our way through the busy crowd to meet them.

Sophie’s Boyfriend Scott and Their Dog Narla – Surprise Support From Below a Bridge

Anna’s aunt, uncle and cousin were also waiting at the finish. Maureen, Anna’s aunt, also received treatment at The Christie for cancer. It was really lovely to talk to her about what an amazing place it is. There’s so much benefit in talking to someone who has beaten cancer and who understands the difficulty of going through chemotherapy. I have an incredible amount of respect for anyone who has withstood all of the struggles that come with a cancer diagnosis. The fact that I know they must be a strong person to be able to do such a thing then allows me to feel good about what I am doing. In turn, it makes me acknowledge that maybe, just maybe, I must be quite a strong person too. I haven’t survived, but I’ve made it through twelve rounds of chemotherapy. There’s a lot more coming my way so I need to try and celebrate every win. Finishing twelve rounds of Folfirinox is a significant win, no matter what the results of the scan are on Thursday. Celebrate it.

Anna and Sophie got to celebrate a significant win today too – they finished their first (and last, so Anna claims) half marathon. They also get to celebrate raising money for an incredible cause. Anna in particular has two people close to her who sing the praises of The Christie, and for good reason. Raising over £1,500 for them is incredible. It was great to see so many other participants running for them too. The hospital truly deserves it for everything it does. I’m so grateful to Anna and Sophie for choosing to raise money for them.

13.1 Miles Later

Being around all that running got me riled up and desperate to run myself. I’ve not been getting out of the house much these past few days. My body has been fighting back against the infection(s) and I’ve felt incredibly tired. After spending the day walking around Manchester, watching large swathes of people pushing themselves physically, I decided to try and get out running again once I got home. It’s funny when you get motivated to do something in this way – you watch people do something and convince yourself it’ll be easy if you just get out and do it too. It rarely is.

Between the age of about 8 and 13, I used to skateboard. If you have been reading this blog for a while, you may have remembered that I used to play the guitar a lot too at this age… Yes, Avril Lavigne must have been inspired by me to write her hit song Sk8er Boi. You’re welcome, Avril. I was never very good at skateboarding, unlike guitar, but over time I managed to learn a few tricks. Enough to go out with my friends and have fun without totally embarrassing myself. Me and my friends used to sit and watch professional skate videos together, where professionals would do mind-bending things on a skateboard and make it look incredibly easy. That is what is so impressive about people who are that proficient at a skill – you can watch them do it and be fooled into thinking it is easy, but you don’t appreciate how many different things the individual is accounting for to manipulate something in such a way. Skateboarding is one of the best examples of this I can think of. We’d get ourselves amped up watching these people throw themselves down huge sets of stairs, doing tricks that I couldn’t even do when slowly rolling along on a pavement. You’d then go outside, feeling incredibly motivated and ready to do whatever it takes to land that damn trick. You step on your skateboard, give yourself a small push so you’re slowly rolling, pop the board and the same thing that always happens happened – you’d enthusiastically gesticulate with your legs in mid-air whilst the board spins a bit, falls, and your feet land clumsily back to the ground either side of the piece of wood. You remember that it just isn’t that easy.

I felt that familiar feeling as I set off running in the early-afternoon heat. Witnessing so many people running a half marathon gave me a false sense of my current abilities as a runner. I headed out thinking that I’m only doing 5 – it’ll be easy! I used to routinely run a lot further than this and wouldn’t struggle at all. Of course, the run was horrible and my body just wasn’t playing ball; I knew it within minutes of setting off. My heart rate was rocketing despite my lungs feeling fine. Your body just isn’t the same on chemotherapy, and the infections a few days prior probably weren’t helping.

Things aren’t normal for me at the minute from an exercise point of view; they may never be again, with me needing a major operation, more chemotherapy, and maybe other procedures that I don’t know about yet. Who knows what I’ll be like in the end. I’m used to loving going running and being quite good at it. I’m not used to having to walk several times whilst running 5K – I’m not used to having to walk at all when running. I am used to pushing myself, though, and despite feeling absolutely crap, I forced myself to keep going for an extra kilometre. It isn’t a lot, but it’s something. Hopefully I’ll be able to enter a half marathon and push myself like that again soon. Maybe even a marathon, but I’m sure that is a while away from where I am right now.

As I ran along a familiar country path next to an overgrown patch of land, I remembered my mum telling me that the only time she has seen a snake in this country was in this area. She said it was dead with some of its body poking out onto the path, I believe. Running along, I looked into the overgrown wilderness and wondered how many snakes may be in there. That overgrown mess is their entire world. Nothing else matters. Their life is hunting, resting and trying to find a mate. Repeat. Repeat. Repeat. They don’t care what is outside of this area – it is totally irrelevant to them. Every day is a fight for survival. One of those days they don’t come out on top of that fight, and they die. I wondered if I’d ever see one as I ran along. For a second I convinced myself that there was one ahead of me. As I approached, I realised it was just a stick. Shame, maybe next time.

The Overgrown Area Next to the Path

I thought about cancer and how arduous it all is. The long spells of treatment, the constant berating of statistics and the palpable uncertainty that hangs over everything in your life. I almost felt jealous of the snakes in their little wilderness. Then I wondered if we are in our own little wilderness and some higher power is looking over us, pitying how simple we are with our cancer, climate change and petty wars. Maybe they’re juggling much bigger priorities with much deadlier consequences. Suddenly I felt a bit better about the whole cancer thing. I’m still managing to run a bit, how bad can it be?

Anna and Sophie are still taking donations. If you would like to donate, their page can be found here. A big congratulations to both of them for challenging themselves and for absolutely smashing it! Can’t wait to support you both at the next one (hehehe)!

Scott and Narla Playing Where’s Wally?

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!