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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Marathoner

6th October 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Iron Man, Lifestyle, Marathon, Pancreatic Cancer, Positivity, Recovery, Surgery, TreatmentLeave a comment

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.

Drew Jones, a Biopic

23rd April 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Pancreatic Cancer, PCUK2 Comments

Raising Money for Pancreatic Cancer UK

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!

Ulcers, Ulcers, Ulcers

15th February 202215th February 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Lifestyle, Pancreatic Cancer5 Comments

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

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

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

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

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

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

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

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

World Cancer Day

4th February 20224th February 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Lifestyle, Positivity10 Comments

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

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

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

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

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

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

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

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

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

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

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

A Pain in the Mouth

2nd February 2022 godley93Blog, Cancer, Charity, Chemotherapy, Fitness, Fundraising, Health, Lifestyle, Running4 Comments

The Chemotherapy Diaries

I’ve written many of these Chemotherapy Diaries posts now, so I have an established process. I tend to write 2 per cycle. The first one is usually easy as I write it straight after treatment day and have a lot to say because this is the most eventful day in the 2-week chemotherapy cycle. Then, in week 2, I try to write another post. My process here is to read back the week 1 blog post and get a feel for the vibe. I then square this off against how the rest of the cycle has felt, and that sets my tone for the new blog post. Today, I read the last one back, and I think the tone is staying the same, which should be a good thing. The problem is that I feel like there is more to instinctively write about when I read back and feel very differently from the original post. So, if you get to the end of this post and think “wait, did he speak about chemotherapy in this post?” Probably not… chemotherapy has been, sort of, fine, dare I say it.

There has been 1 stand out symptom this cycle – mouth ulcers. Usually, I may get 1 or 2 in a cycle and, although uncomfortable, they are manageable. I have some special mouth wash issued by the hospital, which burns your mouth and then leaves it feeling very numb. When faced with standard mouth ulcers, it has been very effective at relieving pain. My mouth ulcers were King Kong-ian this time, though. Not only were they large, but they were also right at the back of my tongue on both sides; the perfect spot to consistently and very, VERY painfully catch on my teeth. They wreaked havoc in my mouth from Thursday in week 1. It was only on Monday that I started to get any relief from them, and it was welcomed with open arms. Before that, I had been through every stage of grief about 3 times with them. Then I had a harrowing experience with some chilli oil.

Sunday night, I was feeling good. I’d had a lovely weekend, seeing friends visiting me from London and enjoying myself (despite the mouth ulcers). I had spent Sunday afternoon out with Anna and my friend Cam, having a roast dinner in a restaurant and relaxing. The whole thing lulled me into a false sense of security that I had a normal life. Scanning around for recipes to make Sunday night, I set my eyes on a coconut and lime potato gratin from Ottolgenhi’s Flavour cookbook (a fantastic cookbook, by the way – I really recommend it for anyone looking for impressive vegetarian recipes). As is standard with this cookbook, it took a good 2.5 hours to make; the recipes are always worth it, even when they have rogue ingredients that require a trip to your local Amazon store. By the time I came to eat it, I was absolutely starving and ready to reap the fruits of my labour.

I was about to find out that I am not as clever as I think I am, which may not surprise my friends and family reading this. The recipe requires you to make your own chilli and garlic oil by frying red chilli, garlic and some spices in oil. The instruction is to do this with 150ml of oil, use around 60ml of it for the recipe and save the rest for other things. “I’m only going to do 60ml of oil and not 150ml,” I said to myself, feeling like I’d broken out of the matrix. I didn’t think about how much more intense the chilli heat would be when a lower volume of oil was used. As I ate the final product and felt good about it, I realised after about 3 minutes that my tongue and, specifically, my ulcers, felt like I had dowsed them in petrol and was chowing down on a plate of lit matches. I tried water, vanilla yoghurt, milk, mouthwash, more water and repeated for about 20 minutes before things started to feel stable again. It was a stark reminder that chemotherapy is king and that my happiness is a slave to it. I had some toast with jam on, sulked and went to bed.

Besides the mouth ulcers, the cycle has been good since mid-way through week 1. Before that, it was still better than the average cycle, but I still felt tired and a little bit crap (a technical term used by the doctors). Week 2 has been particularly good, with me feeling better than ever. I baked my first Victoria Sponge cake for my friend Finch’s 30th birthday. As you can see below, my decorating skills are akin to a 5-year-olds art skill. That may actually be offensive to 5-year-olds. If there are any reading this feeling victimised, I apologise. Although the cake was really delicious, I did not realise what a pain in the arse they are to make. I had to add 6 eggs individually, whisking in between and alternating them with an additional tablespoon of flour. It was like a practical exam, something I hadn’t experienced since my driving test. I kept forgetting whether I had just done an egg or flour as I whisked and was getting flustered. So, despite it being delicious in flavour, I won’t be rushing to bake one again. The next time I can think of will be for my birthday, as it happens to be on a treatment day. There is nothing cooler than baking your own birthday cake to take to the chemotherapy ward, giving it to the nurses and reminding them that it is your birthday. Is it weird if I ask them for a slice and bring my own candles? Who cares, I’m doing it.

I also had another go at the oat, cranberry and nut cookies that I failed at last time. They turned out much better, but they finally proved that I am not a fan of pistachios and don’t care to admit it. They’re just pretty average, in my humble opinion. I also made some cranberry and chia flapjacks. Flapjacks are becoming my favourite thing to make for mornings before I go running. You just feel like they’re little buttery balls of energy. They’re probably helping me in my pursuit to put on weight too. All of the baking is probably helping out in that regard. Finch’s birthday cake definitely did – I’ve never used so much butter, sugar, cream and jam. You start to see why this stuff is bad for you when you bake it yourself. Ignorance is bliss; stay as ignorant as possible, especially if you have a sweet tooth.

Oat, Cranberry and Nut Cookies (Left) and Cranberry Chia Flapjacks (Right)

So I am walking towards the next treatment day feeling positive. The oncologist told me that exercise should help me cope better with the chemotherapy symptoms, so I will happily attribute this cycle being so good to the running and use that as an excuse to do lots more of it. I have another call with the oncologist tomorrow. During the last call, he said we would arrange the scan for the week of February 7th, but I have had a letter through from The Christie arranging the scan for February 28th. I assume this is probably because the team have decided to extend my chemotherapy to 6 months instead of 3. That means that the scan is less time-sensitive now, and so doing it slightly later is probably better for determining the next steps after I hit the 6-month mark in May. It will be good to confirm this with him, though, as I was surprised by it when I first opened the letter.

3 more months of chemotherapy give this series more longevity, which is good. Here’s hoping to have lots of uneventful cycles where I can talk more about baking than any of the horrible symptoms I am experiencing. My pessimistic side says this is unlikely to be the case, but you never know. Today I had my blood appointment at The Christie. All went well. The wait was just over an hour which is a little on the long side, but I try not to complain about such things. I am receiving world-class treatment and not paying a penny for any of it, a luxury that many don’t have. I then met the infamous Nigel, the main subject of my ‘Inspiring Stories from a Pancreatic Survivor‘ post. His lovely daughter Julie who introduced me to him, arranged for us to meet at a garden centre near their house. I managed to resist pressure from Anna to buy another plant whilst there. There isn’t any room left in our bedroom anyway – our window has already been turned into a conservatory. It was really lovely to finally meet them, and it was plenty of fun, as I knew it would be.

Anna’s Conservatory aka Our Bedroom Window

Finally, I absolutely smashed my 5K today. Up to now, I’ve been running them in about 35 minutes. I ran it in just under 30 minutes today, which is a huge improvement. I started running and just felt determined to push myself for some reason. Once you tap into that part of your brain, the rest is history. The next thing I knew, I was letting out a scream as I hit 30 minutes, stopping the activity on my watch and looking down to see 5.07km. It felt incredible and was totally worth the dirty looks I got from the elderly people across the road. I let out a big smile at them, and they probably thought I was a murderer, but I didn’t care. It was a celebration, and they were invited. Let’s hope the upward trend continues (in week 2 at least – I’m not expecting miracles during week 1).

My Pancreatic Cancer UK Top Came in Time for My 5K

Run 40 for Pancreatic Cancer Begins

1st February 20222nd February 2022 godley93Blog, Campaign, Cancer, Charity, Fitness, Fundraising, Health, Lifestyle3 Comments

Today marks the start of the Run 40 for Pancreatic Cancer UK. I have written about it in pretty much every post since I signed up for the challenge, so I am sure you are as relieved as I am that it has kicked off. “Maybe he’ll talk about it less now it’s begun,” you may be thinking, and in response, I say – NEVER. It is now the perfect time to write an entire post on it.

My target of £2000 has been hit today, which is crazy. Thank you so much to everyone who has sponsored me so far. My Pancreatic Cancer UK shirt has not arrived yet, but I will be repping it for the runs once it does. It feels great to run for a charity whose cause is directly affecting me. I’ve run a marathon for Cancer Research UK before, but I did not have much personal affiliation with them then. It feels very different running for a cause that is now directly plaguing my life. I really encourage you to support campaigns for pancreatic cancer as well as signing up for events with them, like the Run 40 campaign. They help raise essential funds for their work and make a huge difference in people’s lives. I’ve found both Pancreatic Cancer UK and Pancreatic Cancer Action to be supportive, engaged and motivated.

The Just Giving page can be found here for those looking to support my campaign. I will be posting updates on there as well as through the blog. I’m going to raise the target again, this time to £2500. I started out with a target of 10% of that number, so it is incredible that so much has been raised. Thank you so much to all who have supported me financially in this campaign and generally through the blog. It was on my mind throughout the run today and it motivated me so much. A friend drove past me on my run and texted me, saying that I had a very determined look on my face, which made me happy. I feel highly determined, and it is a direct result of the generous sponsorships, so I’m glad that is the image I am portraying to the world. “What is that guy looking so serious about,” the random motorists probably say. ‘CANCER’ is the answer they probably don’t want or care to hear.

It’s amazing how much can change in 3 months. I’ve gone from eyeing up the next ultra-marathon, being excited about a challenging new role at a new company and loving my newly purchased flat in London to living with my parents, fighting cancer and not knowing what the future holds for me. Of course, some of my future is predictable, similarly to before. I believe the saying is ‘nothing is certain but death and taxes’. The cancer version of this saying would need to add chemotherapy, hospital visits and more blood tests than hot dinners. My new life sees me engaged to an amazing person in Anna, spending far more time with my parents than I ever thought I would again and focusing on a new set of skills. I am also looking at going back to work on a small-time commitment per week, which should be a really positive change. So although things may be different, there is so much that I feel grateful and content with.

Today, I had a taste of my old life back, though. I was starting out on a new fitness challenge and feeling more motivated than I’ve felt since being diagnosed. The sun shone directly onto me as I set out on an old favourite route. I’ve been running in the area since I was about 18, so it holds a lot of nostalgia for me. More so today than ever, I found myself reflecting a lot on the situation that I now find myself in. Those of you who have gotten very into exercising in your life may know what I mean by the meditative state you can achieve. You don’t always hit it, but it is so blissful when you do. In my experience, I know when I have hit it because, at the end of the run, I can barely recall a second of what I was thinking about. My mind never goes completely silent like an actual state of meditation, quite the opposite. I find myself processing lots of thoughts and addressing them with a razor-sharp focus. It is when I feel most able to cope with all of the quandaries and complexities of my life. By the end, I struggle to recall any of the things I dealt with, but I know I feel better about them. It used to help me deal with problems at work, relationships and general fluctuations in mood. Today was one of those days where I seemed to hit that stride again towards the end, and it felt sweeter than ever.

There was a strange moment on the run where I remembered being in such a mood on a previous run. I couldn’t pinpoint the exact run, time or place. I felt connected to the thoughts in such a vivid way that I am sure it was on that same route, but I am well aware that this could be nonsense. On that previous run, I had been thinking about someone offering to tell me exactly when I died, how and where. I can’t remember why I was thinking about it, whether it was something from a film or perhaps a discussion with friends, but I remember thinking about it. At the time, I felt that I would want to know, and I remembered telling myself that it would allow me to enjoy my life to the fullest, even if it said something unexpected and unappealing.

Today, as I ran along a route well-trodden by me throughout my life, I felt that I had grown as a person as I remembered these thoughts. The truth is that at the time, I didn’t ever expect that I’d be dealing with such an awful cancer at such a young age. I thought I was too young, too healthy and too genetically lucky (there is very little cancer in my family) to suffer such a fate, especially at 28. It felt good to tell myself that I’d want to know what kills me and when because I covertly thought whatever killed me, it wouldn’t be until I was much older. Most people probably feel the same way who are in their 20’s and seemingly healthy; why would you assume otherwise? These days though, I have a genuine threat to my life. I’m currently classed as inoperable, and unless my tumour can shrink enough and away from the artery it has spread to, then I will die of pancreatic cancer. Even if this happens, I will need a very successful operation and recovery to keep the cancer away, as the reoccurrence rate is very high. Even with a very successful operation, there is probably a good chance it could come back. It all sounds very bleak, but it is the reality of pancreatic. I feel more understanding of the original diagnosis than ever. It was delivered in such a bleak tone. Until then, I had convinced myself that I was young enough to fight it and not be threatened by it whatever the cancer. This was the first time that faith had been well and truly shaken, and I have been pessimistic about the doctor who delivered it since. I don’t feel like that anymore; it is a shit cancer to have, and the news was delivered in a tone that represented this. He could have reminded me that I am young and very fit, though, just once. That’s what everyone else does, and it still makes me feel a little smug, even if I know it could count for nothing in the end.

Despite all of this, I feel happier and more accomplished than ever. As I ran, I thought about all of the people I’ve interacted with who have been affected by cancer. I thought about the posts I see on Twitter, the adverts for Cancer Research UK, and the grieving relatives I’ve met in support sessions. There are so many horrible things to focus on with cancer, but it is undeniable that it brings out an incredible amount of spirit in people. The support that my campaign has garnered already is proof of this. It allows me to feel grateful to the cancer for something, which feels like an important state of mind to hold in my situation. I cannot change my diagnosis, and being angry at the situation won’t increase my chances of survival. It may actually decrease them. There are people who are far more morally superior to me who have been diagnosed with cancer earlier in life, and morally inferior people to me who have tread many years longer without any health issues at all. It doesn’t mean anything in the grand scheme of things; I am proof that cancer isn’t too fussy about who it impacts. No amount of exercise and avoiding red meat stopped me from being affected by it at a statistically bullshit age (not a phrase used by the doctors… yet).

So, I ran 5 miles today without stopping. Full disclosure: I did walk at one point. I was going up a hill and realised that it would be quicker and more efficient to walk. It marks the first time that I have managed to run a 5K without stopping, as well as being the longest distance I have run since being diagnosed. The challenge really has got me feeling determined. It also helped that the weather was warmer, so my throat wasn’t closing up due to the side effects of chemotherapy. Usually, in the cold, I am wrestling with my throat feeling tighter and pins and needles in the back of it; it’s very uncomfortable.

I think my tactics for the challenge are going to be: take advantage of week 2 in the chemotherapy cycle and get the majority of miles in then, and record my walks in week 1 if I am struggling to run. The aim is to run the entire 40 miles, but allowing myself to record walks in week 1 ensures I cover myself if I have a nasty cycle. Hopefully, they continue to be like this one, which has been mostly Ok. I have learnt first-hand that the cycles can be highly variable, though, so I won’t be betting on it.

It has been a great first day, and I can’t wait to challenge myself over the remaining days of the month. The next mini target is to complete a 10K. I feel much more confident that I will do this after today, especially if we get some more sunny days. I’ve been enjoying signing the blog posts off with a song. Today’s is a song I found recently which is super vibey. It is the soundtrack to the start of the challenge, and a month of good vibes and achieving things, no matter what news the progress scan brings on February 28th.

A Bell of Hope

24th January 20222nd February 2022 godley93Blog, Cancer, Charity, Chemotherapy, Fundraising, Health, Lifestyle, Pancreatic Cancer, Recovery, Treatment2 Comments

The Chemotherapy Diaries

Saturday was chemotherapy session number 5. More importantly, I baked the nurses a Blueberry Cheesecake that seemed to go down well, but I didn’t hear how it tasted as I left before they went to lunch. I wish I had asked for a slice as the bake looked better than my trial one earlier in the week, but I would have been taking it from one of the nurse’s mouths, which wouldn’t feel good. They deserve it more than I (and I can always make more cheesecakes)!

A lot of baking took place on the Friday before treatment.

I showed up to chemotherapy in quite a chirpy mood this week. I am feeling optimistic about the 3-month scan for some strange reason. Not necessarily because I think it will bring good news, but it will be the first look at the tumour since November, and I want to understand where we are at with the treatment. Anna and I have provisionally booked our wedding venue for September 16th, so I now live in perpetual fear of having a procedure arranged in the weeks before or having to do mop up chemo around the event. Of course, I talk of ‘fear’ here sarcastically – getting to the stage where it is operable is the ultimate goal of treatment and would be an incredible feat. But the deposit for the venue is also £1000… how valuable is my life? Hmm, I guess I could lose £1000 to better guarantee it. Perhaps.

The nurses seemed in good form too. I was chatting away with the team about baking, chemotherapy and working Saturdays. It is usually a sign of a good chemotherapy day when the needle is inserted into my port in my chest doesn’t hurt too much. It didn’t. “Short scratch coming,” the nurse said, and it was just that. The Monday after Christmas’s chemotherapy session felt like the nurse had stabbed me with a dagger, and I got shooting pains up my neck and back. When the district nurse came to my house to disconnect it on the Wednesday afterwards, she had shown me that the end of the needle had been bent, so she may have inserted it into the very fringe of the port. It made sense why it hurt so much. But this wasn’t one of those days.

I learnt something interesting during the delivery of chemotherapy bag no 1, AKA good cop. Around halfway through it, they link up another bag of clear fluid to be delivered simultaneously as the chemotherapy drugs. I always thought this was more sugar water to ensure your body is remaining hydrated and/or to keep the chemotherapy drugs somewhat manageable on your body. The nurse informed me that it was actually a mixture of nutrients that helped the chemotherapy stick to cancer cells. It is delivered through the remainder of bag 1 and then bag 2, AKA bad cop. It made me feel better, and I imagined the little nutrients high-fiving the chemo drugs as they flew through my veins to find those cancer cells together. Unfortunately, the good vibes didn’t last; bag 2 was in a bad mood this week.

Before starting bag 2, the nurse did their usual charm offensive to try and get me to take the injection before starting the treatment. It is supposed to help lessen the negative symptoms of god-awful bag 2. There is a catch, though. Once you accept the injection, you have to have it every session before bag 2. It also means that it has to be administered over an hour and a half period. I’ve managed to work the delivery time down to 30 minutes, and although it might be 30 minutes of overheating, discomfort and nausea, it gets me home damn quicker. I know which I prefer. No, thank you, injection.

During bag no 2, I usually sit forward in the chair with my eyes closed and put on some music to distract me. It’s only 30 minutes of hell; I’ve been on dates that have lasted longer and put me under more discomfort (full disclosure, this is entirely facetious). It’s nothing. Luckily, I sat without headphones on Saturday just as a woman came in for her treatment on the chair next to me. The nurse asked her to step onto the scales, which is part of the standard introductory treatment demands. She stood on, and the nurse emphatically said, “Amazing! You’ve put on 3kgs,” the woman then threw her hands up to her face and smiled in delight. “Only on a chemotherapy ward can someone announce that a woman has put on weight to the room, and it result in a Cheshire Cat smile on their face,” I thought to myself, temporarily forgetting how horrible I felt.

Fast forward about 45 minutes, and I was ready to leave. Anna and my mum were running a bit late due to traffic, so I wasn’t in a hurry. I got my things together and asked the nurses if I could get the bottom of my baking tray back. She did me one better and washed it for me – what a delight! I grabbed a coffee from the catering assistant who was making her way through the ward and packed up my bags. Another treatment day down. I felt a bit nauseous, my body was sweating and muscles cramping, but it was over. I started to make my way down the hall to the stairs, before descending to the main lobby to wait for the car.

As I was leaving the chemotherapy ward, a woman was being recorded by a nurse ringing a bell in the stairwell. This is a tradition when you have beaten cancer for those who don’t know. You ring a bell in the ward, and the nurses and patients cheer. I was unaware of this custom until I saw a video on Twitter of a woman doing it in a hospital in the US. This custom apparently is also followed in the UK, as I learnt in that moment. I didn’t want to walk in front of the camera and ruin her shot or utter a clumsy “congratulations” in the background of her precious moment, so I just side-eyed her and smiled. She was crying to herself. I heard whooping from back in the ward. It was hard not to imagine me in her shoes, feeling that same glee, letting out the pain and suffering of the last 6, 12, 18, however many months. It gave me hope.

Downstairs, I headed to the M&S cafe and grabbed another coffee. Sat in the waiting room drinking this coffee, I started to feel some pain in my abdomen. The feeling quickly changed, and I knew I needed a toilet pronto. Just as I stood up and started darting my eyes around the room for a bathroom, I saw Anna pull up in our car with my mum in the passenger seat. They waved at me, but I messaged them, saying I had an emergency. Diarrhoea at treatment is new for me, and believe me, I wasn’t happy about it. The Christie is an hours drive from my parent’s house – not ideal conditions for someone suffering from this ailment.

After spending 20 minutes in the toilet, I had to make my way back up to the chemotherapy ward to get some of the diarrhoea tablets that I had rejected at the start of the session. “I don’t get it too often, so I have loads of them at home. Don’t worry about it,” I’d said. Now here I was again, tail between my legs. “I was wrong. I’ve got bad diarrhoea. It’s an hour journey back to my parent’s house – would you mind if I got a box of the medication?” 2 of the patients could hear every word I was saying and were staring at me. You stop giving much of a fuck when you deal with this stuff so frequently, to put it politely. The nurse quickly clicked onto the system, got the drugs released and had them to me in 3 minutes. This is why I always bake for them; they’re utterly fantastic.

It took 5 of the 8 diarrhoea pills allowed in a 24 hour period to sort the situation out and get me home. We did have to stop at a motorway service at some point. It isn’t a lot of fun dealing with such situations in the services, and it really was a low point. I had my chemotherapy bottle in my pocket and linked to my chest, my head in my hands and my bum on a grotty toilet. Luckily, I was laughing about it to myself. It was all quite funny, really. I feel like I have a mental cadence where I sit in a situation and evaluate whether it is rock-bottom or not. It shouldn’t have been considering what happened to me recently (such as the diagnosis itself), but this situation really felt like a contender. Only another 30 minutes until home. Doable. I got up, left the cubicle, washed my hands, and went back to the car. Nearly there.

Finally home, but it had taken its toll. I was sitting on my bed upstairs, shaking a lot and struggling to keep my eyes open. I think it was a combination of losing a lot of fluid and my body dealing with the effects of the chemotherapy drugs. Luckily, a couple of electrolyte drinks and some support from lovely Anna and I managed to pull things back. Just in time for a few friends to come over and cheer me up. Robbie, Norah and Drew, 3 good friends of mine, spent a few hours at the house chatting away and taking my mind off the situation. It was wonderful. They came over again on Sunday afternoon to walk Lucy with me.

Now, I feel a bit dodgy, but it isn’t proving to be as bad as initially. I have a few blog post ideas bouncing around my head, which always cheers me up, and I have signed up to Run 40 for Feb, a money-raising campaign for Pancreatic Cancer UK. I’m going to be doing it throughout Feb, sometimes having to walk probably, but I’ll get it done. If you’d like to donate, the link to the page is here. I am currently sitting on a healthy £0 as I have not shared it with anyone, but hopefully, that’ll change soon. I’m going to donate some money myself, too, as I really do respect their work. Their dedicated nurse team are fantastic and so supportive. For now, I’m going to leave you with a song that nicely represents the mood of the article. I hope you have a great start to your week!

Menu

Ebb and Flow

Charity

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

Marathoner

Drew Jones, a Biopic

Raising Money for Pancreatic Cancer UK

Ulcers, Ulcers, Ulcers

The Chemotherapy Diaries

Half Way Blues

The Chemotherapy Diaries

World Cancer Day

A Pain in the Mouth

The Chemotherapy Diaries

Run 40 for Pancreatic Cancer Begins

A Bell of Hope

The Chemotherapy Diaries