Surgery and Yellow Mayonnaise

Taken 04.06.22 at a Music Festival

It has been a few days since the meeting with the surgeon. The response has been a bit varied among my family and friends. Surgery certainly makes everything more real. Knowing it is a major operation which carries so many risks brings an entirely different element of worry to the situation, I get that. If the situation with the tumour was more positive and the surgeon was more confident he could do a full removal, the decision to push on with surgery would bring a further level of comfort that it is the best decision. Seeing as this is not the case and that the tumour seems to be surrounding the artery still, it brings much more anxiety for all involved. For me, I will not be conscious for any of the surgery, or even most of the intensive aftercare. It is everyone else who will have to painstakingly sit for hours, waiting for the news of how the surgery has gone, what they managed to do, and if there were any ‘complications’. By the time I’ve found out these details, it’ll likely be days after the operation. I’ll be off in dreamland, so deep under the influence of drugs that I’ll probably be exploring Narnia from my vantage point, riding on a dragon’s back (I’ve never had a dream like this so I’m not sure why I would start now, but it’s nice to dream about the potential of your dreams).

There have been a lot more tears since Tuesday. Perhaps it is a combination of learning what my staging is and having it clearly communicated that a full removal is unlikely. It could still happen if the scan failed to be accurate in its portrayal of the tumour, but he seemed to doubt it would be so wrong. I did do another CT scan at the hospital, so I’m waiting for the surgeon to call me with the results of that. Perhaps he will be more confident of what will be done in surgery once he has reviewed it, assuming the scan is better quality than the last one and offers more insight. Nano-knife is the most likely outcome. A full removal is not out of the question eventually, I believe, but the surgeon didn’t seem willing to discuss such a scenario. I didn’t try, to be fair. He had an air of confidence about him which was tantalising. Every sentence was carefully thought out, every word scrutinised in his head before it left his mouth. These situations are tense; you could tell that he was experienced in dealing with them.

I’m unsure whether he will do some form of partial Whipple no matter what he decides is possible with the tumour. I need to ask him when he calls me about the scan results, but it’s one of those things that I’m unsure whether getting an answer is better for me. It seems easier to just wake up after surgery and face the music then. The outcomes sound so varied depending on what they see during the operation that I doubt I’d get a straight answer anyway. At least I trust this guy to tell me that the answer isn’t easy and I’d believe him if he said as such. The fact that there is a cyst on the other side of the pancreas to the tumour indicates that the surgeon will have to do more than just deal with the tumour. We did ask him if he would be removing the cyst despite what happened with the tumour, and he said that he would. It was funny – his reaction was almost like this was a total afterthought – an irrelevancy in the face of the cancer. “Oh yeah, there is a cyst there too, isn’t there? Yeah, we’ll get that out,” he casually said when the question was put to him by Anna. Surgeons are so casual. They must realise that their job terrifies the other 99.9% of people on planet earth. I’m sure that there’s a smugness that comes with that territory. I’d certainly be smug about it if I were one. He didn’t seem particularly smug at all. After arranging the CT scan on the phone with the radiology department, he said that he needs to get a nurse to put the cannula in. “I can do surgery on you but I can’t cannulate you,” he chuckled – I suspected this was that smugness coming in to play.

One of the things I have changed about my behaviour recently is my diet. Since learning a little about the immune system and how it is constantly fighting ‘bad’ cells being created in your body, I have been much more taken into the idea that your immune system plays a vital role in how your body battles cancer. Before, I thought whether you developed cancer or not was more a thing of luck, with a heavy dose of genetic makeup. The book I am reading seems to suggest that this is not the case. He references a study about fostered children. The study was conducted in New Zealand as apparently they have detailed records about births and biological parents. In the study, they measured the cancer rate among a group of people who were fostered from a young age. If the formation of cancer was more down to genetics, the numbers in people who suffered from cancer would be similar between the focus group and their biological parents, irrespective of whether they were raised by foster parents or not. If the formation of cancer was more down to behavioural patterns rather than genetics (e.g. diet, exercise habits etc), then there would be less significance between children and their biological parents, and more significance in the trends between the foster parents and the children they adopted. The study showed the latter, indicating that the formation of cancer was effected more by behaviour than genetics.

Now, I’m not suggesting this single study proves the point entirely, and more importantly, I have not looked into this study myself and do not plan to. It is enough to convince me that behaviour must be more important than I perhaps anticipated. As a result, I’m trying to avoid processed food as much as possible, based on some scrutiny of these types of foods. Turning over a food packet to look at the ingredients and seeing different types of sulphites listed is a little concerning to me, even with my limited knowledge of sulphites (and believe me, my knowledge is limited). A quick Google tells you that they are only dangerous for a small number of people who have problems with asthma. Does this mean that it is only an immediate risk to these people, though? I can’t imagine digesting a lot of additional sulphites is good for you, never mind the fact that they are added to foods to preserve them. Anything that makes it harder for the world to digest the food (i.e. through the process of bacteria breaking it down), sure means that it is harder for your body to break it down. The more unnatural the ingredient is that you are adding to preserve the food, the more dangerous it would be for your body, I would assume. It makes logical sense to me. The world isn’t always logical, though, so maybe I’m barking up the wrong tree here.

Yesterday morning, I decided to Google ‘should you avoid food preserved with sulfites’ to test my theory. I had seen ‘Sulphite Dioxide’ on the back of the packet for some dried apricots and it got me interested. Notice that I did not add ‘if I have cancer’ onto the end of the question; I’m not even getting into that with Google. Searching for anything specific to cancer with Google can lead you to all sorts of dark corners of the internet. It seems to be the most prolific hearsay topic on the planet.

The first article I clicked on was one titled 5 Food Additives You Should Avoid. According to this list, and after doing more reading around, it seems that sulphite dioxide has a low toxicity for humans in most cases, so is generally regarded as safe. As I stated previously, though, I’m sure it isn’t completely inconsequential eating it in a lot of your food, but anyway. The thing in the article which got my attention more was food additive number 1 in the list – Sodium nitrates. Want to know why? Because it states that they increase your risk of pancreatic or colorectal cancers. If there is one way to grab my attention, it is by throwing around the name of my beloved cancer. Pancreatic. Dancreatic. Dan’s Dancreas. Dan’s Dancreactic Dancer. Anyway…

Apparently, sodium nitrates are mainly added to meat to stop it from discolouring. That should make them extremely low risk for me, an individual who does not and has not eaten meat since 2016. Perhaps this is another cruel irony of the world, like when a non-smoker gets lung cancer. During the digestion process, toxic chemicals are released due to the sodium nitrates being broken down by stomach acid. It is them which pose a threat to humans according to the limited research I did on the web. Rather than always researching other people’s research, I thought I’d conduct my own. I headed down to the kitchen, opened the fridge and found a packet of bacon. It had come from Waitrose, one of the more expensive supermarkets here in the UK. I turned the packet over and read the ingredients. Just like that, I completed my study. Sodium Nitrate. Confirmed – it is indeed added to meat. Study complete. Science is so easy. You probably thought I was somehow going to confirm that the breaking down of sodium nitrates in the stomach releases deadly toxins didn’t you? I’m not that good – go speak to a real life scientist if you want real research.

It just feels like a minefield trying to investigate diet further. Information seems so inconsistent and you wonder how things get approved for use if they truly are so bad for you. What is true, apparently, is that cancer rates in the west are much higher than in the east, and it would make sense to me that the key difference between us is diet. We have been eating highly processed foods for longer in the West, with the quick growth of fast food since chains like McDonald’s grew in popularity. Now processed food is everywhere and considered very normal. We look at things like butter as being intrinsically bad, despite us being able to comprehend how butter is made. Look at the back of a margarine tub and try to figure out what on earth the ingredients are in it – half of them sound like they belong on the back of a toothpaste packet or something. Do we really feel better eating that just because it is lower in calories? Fats are very useful to us humans, we seem to forget that fact. My body struggles to process them now and I have to take supplements constantly to ensure they are being absorbed by my body. What I’m trying to say is that you should revel in the fact that your body can absorb fats naturally (if it can) and utilise it by eating full fat butter, damn it! I do it now more than ever and it is a beautiful luxury.

Sometimes I find myself pondering whether knowledge is power or not. Do I find myself feeling empowered by it or intimidated by it? The question never feels more applicable than when trying to research diet and cancer. My new thing is to mercilessly avoid food with preservatives in it, where possible. All of a sudden, I am not eating any crisps, baked goods from the shop or heavily processed chocolate bars; those of you who know me personally will understand what a huge deal that is for me. If I want something sweet, I try and bake something quickly. For example, I’ll bake apricot and walnut bars to have at breakfast, alongside fruit. I’ve started making my own mayonnaise instead of having it out of a bottle; the home-made stuff is much more yellow than white – it’s strange when you have only just started making it yourself. It really does taste lovely when fresh and you can mix up how much mustard you put in it, which is nice. The next step is to learn to make loafs of wholemeal bread but I’m building myself up to that. It’ll probably take me a morning to get into it as dough is not something I have worked with so far. Rivetting stuff, dear reader, I know. This blog is probably your guilty pleasure these days with such innane ramblings about diet and food, if you even try to have any pleasure from it. At least it isn’t all cancer cancer cancer; it also makes you feel guilty about enjoying the foods you’d normally mindlessly eat.

Yet, this obsession with avoiding preservates is probably just a new scheme to feel in control of the diagnosis. I’m not suggesting that it doesn’t assist in the fight against cancer too, but plenty of people have spent their entire life eating terribly, not having a care in the world about how many preservatives are in their bacon sandwich, yet don’t develop cancer. It is difficult to reconcile that, as I believe I’ve lived a fairly healthy life so far and still managed to get cancer. The fact that I likely ran 100km with the beginnings of cancer brewing in my pancreas is almost comical to me at this point. It was after I had originally got to the doctor’s complaining of stomach issues. The result of that was multiple scans at the hospital, but with no meaningful results. Their conclusion was that I had a strange form of constipation; it never convinced me. I guess when your tumour is 3.2cm at its largest, it is difficult to see with conventional scans. You have to step up to the expensive PET scan which they weren’t willing to do at the time. They don’t tend to assume that an otherwise healthy adult in their late 20’s would have pancreatic cancer; I know that from the first few weeks when trying to be diagnosed – “It’s probably pancreatitis but we can’t rule out cancer, although it’s very unlikely to be that.” I can’t remember how many times I heard words to that effect, but it was a lot.

So, here I am. Dan with the Dancreatic Dancer trying to research diet in an attempt to stop the Dancer getting the better of the Dan. Maybe the fight against preservatives will provide a useful distraction over the next few weeks, until the surgery day comes. Making everything from scratch is certainly time consuming. I’m getting used to the yellow coloured mayonnaise now, anyway.

I Hate the Sea and Everything In It

The Road to Recovery

Matt, Lucy Dog and Me at The Flat in London

It’s been a few days since I got the scan results. I wish I could write that my inner stoic has surfaced and that I’m taking the results on the chin. In a way, I think I am dealing with it fairly well, but it is still difficult to face. Although I did not get any bad news per se, the vibe of the meeting just left me feeling deflated. It worried me more that I was asking questions but not really getting any answers. Responses such as “I can’t answer that I’m afraid” and “It isn’t clear at this stage” aren’t necessarily a bad thing – I understand that giving an answer when you aren’t confident it is correct, or where it isn’t your responsibility to know, is not a better thing to do. A little bit of optimism or encouragement goes a long way in these meetings, though. I do not feel like I got a lot of that in the last one. Uttering “so, I don’t have any bad news for you today,” may constitute optimism in some people’s books, but in mine it constitutes the bare minimum amount of optimism you can provide as a foundation to a meeting. Maybe Dandard’s standards are just too high and I need to ground them a bit.

The event that originally charmed me about The Christie happened during the first meeting with my specialist. Up to that point, I had faced nothing but negative news, pessimistic outlooks and concerned faces. Having a medical professional utter things such as “we’ll get you back to running marathons” and talking about how I’m young, so there are many options for me, made an incredible amount of difference in my spirit. That is exactly what the oncologist did in my first meeting at The Christie. I practically skipped out of the meeting and felt so relieved that someone had painted a different picture of my diagnosis. All of a sudden, it felt like the possibility of a meaningful future still existed. That wasn’t something I’d managed to entertain until that point, since being diagnosed. Things got better from there; it was easier to feel like myself. Yet nothing had been promised to me. I wasn’t going to bang on the oncologist’s door and demand to know why he had told me that I’d be running marathons again if my tumour ended up being inoperable, or if there was a recurrence after surgery… or even if I was cured, but didn’t feel like running marathons anymore. I took it for what it was – a vote of confidence. A communication that things can return to normal, that there is a way to be cured from this disease and return to my normal life. It felt amazing, but it seems to be uncommon in the world of oncology to offer up such pleasantries.

It seems pessimistic to even need such reassurance, as if I should know that there is a cure and that it is possible in my case. The literature around pancreatic cancer does not leave you feeling particularly confident that there is such a cure, though. Nearly all success stories seem to be where the tumour could be removed quickly, and where the cancer was identified at the earliest possible stage. My cancer was diagnosed early, relative to the average diagnosis, but it wasn’t early enough to allow for surgery. Pancreatic cancer is often diagnosed at a late stage as it only starts showing symptoms later on… or at least, that is when the symptoms get significant enough that pancreatic cancer is considered, as opposed to something much more minor. In my case, I was told that I was suffering from a mild form of constipation. Turns out that diagnosis was incorrect, unfortunately for me.

Despite being diagnosed relatively early, my tumour is still locally advanced and has other complications, such as it’s m unfortunate appetite for arteries, making it difficult to remove. There’s also the unknown ‘mass’ which is apparently bewildering the oncology team; previously known as a ‘cyst’, but becoming more mysterious over time, and even getting smaller in the last progress scan – a property of cancerous cells. The ‘cyst’ label seems to be a misnomer, but I’m not a huge fan of the nondescript ‘mass’ label that has now been assigned to it. Those facts are playing on my mind as I wait for the surgeon’s verdict. If my meeting had been more encouraging, either by having more positive results or having a more hopeful delivery of the results, I may be dealing with the anticipation a little better.

That isn’t to say I am blaming the oncologist either. Through a workplace help scheme, I got 6 counselling sessions paid for which I decided to start using a few months ago. My final one was today. It actually should have been a few weeks ago, but my counsellor suggested making the sessions 30 minutes instead of an hour so we’d cover a larger period. It was extremely kind of her to do so and she was under no obligation to.

Speaking to her earlier, we discussed how the oncologist’s job is actually quite prescriptive. It is a matter of enforcing processes, evaluating results and responding to those results in a mostly regimented way. For example, you are identified as needing x type of chemotherapy. Within the chemotherapy cycle, there are checks a, b and c which are used to determine how well it is going. If something goes wrong, there are appropriate ways of identifying the issue, and then responding to it. For example, if your platlets are identified as being too low for treatment, you will delay the treatment by another week and check the bloods again, to see if the levels have recovered. Everything is constrained, and the approach is standardised insomuch as it can be. Some things may fall out of the standardised approach, such as where the individual gets an infection and the team need to find that infection, assess how dangerous it is and then help the individual fight it. For the most part, though, an established process is followed. The surgeons work is where a more creative approach must be adopted. It is where the individual specifics of the case must be properly dealt with in a direct manner.

The surgeons also offer up the next major piece of progress, allowing the treatment to progress further. As far as I understand, the success of the surgery itself will determine what comes next in terms of a treatment plan. Sometimes the surgeon will go in and find a different situation to what they expect in terms of the tumour. For example, they may go in to find that many lymph nodes have also been impacted, making the surgery more time-consuming and risky. The fact that I also have an unknown ‘mass’ to remove will undoubtedly make the surgery more complex. Perhaps that means that they are less likely to consider a full removal as an option for me, or perhaps it makes them more inclined to try if leaving the mass increases the perceived risk of me dying. I just don’t know, but neither did my oncologist. Or he wasn’t willing to vocalise his opinion on the matter. I’m sure he has an inkling what the answer is, but it wouldn’t be in his favour to offer up an opinion if there was a risk that the decision from the surgeons does not go in that direction. I’m sure it’s more than just a risk that such an event happens.

I keep thinking of it in terms of my work experience to try and offer myself some comfort as to why I could not get my questions answered. If I am on a project and a client is asking about the budgetary constraints which I am not aware of, I would not offer up an opinion on the matter as it is not my expertise. At very least, I would tell them that I did not know, but will speak to the appropriate team and get back to them. Either this or I would organise a meeting with the appropriate team so that they could discuss it. What the oncologist did is not too far from this, which comforts me somewhat.

They did not attempt to get a surgeon involved in the meeting, to offer an olive branch in the form of asking one of the surgeons to call me sooner to answer my questions, or to get some detail from the surgeons to offer up alongside the news that the case was being passed them. Perhaps there is a specific reason for none of these things happening. My guess is that the teams are considered completely separate functions, divided not only by discipline, but by the actual hospital they operate from too; my oncology team are part of The Christie, whereas the surgery team are based at Manchester Royal Infirmary. That means that the oncology team probably do not have any right to ask for their time. I get that, but it would be beneficial for the patients if the oncology team could try and coordinate such a thing. It may lessen the anxiety ridden month that follows the news that your case is being referred to the surgeons. The surgeons must have representation on the multi-disciplinary meeting after all, seeing as that is the meeting where it is agreed that it can be passed to their team in the first place.

But anyway, criticisms aside, the task is to now keep myself busy and not dwell on what may or may not happen. For a month I have no treatment, no meetings, no appointments. There is a comfort in that. I’m trying to embrace it, use the time to start doing some normal ‘life’ things. Anna and I drove to London to spend a few days back in our apartment. On Friday, I attended some work drinks for my manager who is moving on from the company I work for. She has been a great support throughout the last 8 months. It is sad to see her go, but it was nice to do something ‘normal’ again in attending her leaving drinks. I hadn’t seen anyone from work for around 8 months, since I was first in A&E with abdominal pain, on a random Monday evening. Everything changed so quickly; nothing that was previously considered ‘normal’ feels normal anymore.

I got a little carried away and had three pints. It was over the course of about 4 hours, but I ended up getting in late, eating even later, and going to bed even later than that. Not a lot of alcohol is required to get my anxiety going these days. I lay awake at 5am, after getting a few hours sleep, in the spare room of my flat in London (the master bedroom is being rented to a friend Matt as I couldn’t afford the mortgage whilst not working). I felt angry at myself. My mind paced yet further through the emotional landscape. Anger turned to worry. “Why am I drinking three pints when I’ve got a tumour? Could it worsen my condition to an “extent that the surgery could be unsuccessful? Worry turned to pure pessimism. “Who am I kidding, I’m not going to get the surgery.” It sucked.

I wish I could be easier on myself – the logical part of my brain knows that I don’t drink often, and three pints is far from a ‘session’ by normal standards. Anything that can make you feel bad under these circumstances, will. It feels like it is part and parcel in these uncertain periods. Nothing is good enough, everything is intimidating. Any cracks in your mindset start to break into holes and the vulnerabilities you harbour start to rise to the surface. Perhaps it is necessarily to feel it to allow you to then process it all properly.

Saturday was busy. I needed it to be. We met friends for brunch in the morning before walking Lucy around Clapham Common. There were sausage dogs everywhere, and Lucy had a great time playing with dogs her own size for once. Then we went to a friend’s birthday drinks in Tooting. By about 17:00 we were back at the flat, getting ready to host my brother in law, Keiran, and sister, Josie. It was Keiran’s 30th birthday. He seemed to like his presents from the family which was nice! I also made him some double chocolate chip cookies. He had about half of one but I wasn’t offended – he is currently trying to eat less ‘bad stuff’ and they definitely fall in that category. The other 30 are being eaten by anyone else who walks into the flat. I’ve been sending people home with multiple just to make sure they don’t go to waste (and that the responsibility to eat them isn’t all left to me).

Lucy’s First Time on the Tube

On Sunday, my brother was competing in a cycling event in London. A few of my family members, including my parents, all met up in central London to meet him afterwards and go for food. I think the previous few days had caught up with me. We sat outside waiting for him to finish, but I managed to get incredibly cold, despite wearing two coats, a long sleeve top and a t-shirt. I’m not sure what was going on really. Once he had finished, we went to a local pub for some food. I was falling asleep and wasn’t good company at all. Anna and I left early and made our way home. Lucy seemed tired too so I think she appreciated it – the previous day had been a lot for her too. That did mean she couldn’t beg for any more food, though, so perhaps she was a little bitter. After getting home and napping for a bit on the sofa, I managed to force myself to run 4 miles. That felt pretty good and helped me a lot mentally, even if it absolutely killed me physically.

Working in a Cafe with My Bezzie Dee and Lucy

So, the mental back and forth continues. At times I manage to embrace my inner stoic and feel like I’m at peace with what is going on. I am in many ways. I accept the negative statistics that get plastered on every pancreatic cancer website, I just refuse to accept that it is inevitable for me to become part of them. If I do, I’m ok with it, but I want to know if that is the case. Currently, I reside in a place of limbo. Getting out and staying active seems to help, though it tires me out and leaves me feeling exhausted. I’m finding keeping busy to be a double-edged sword. It is good, but also leaves me feeling like I am avoiding some unpleasant realities about the situation. Those negative thoughts only emerge from the shadows of my mind when I have pockets of time to myself; it makes me realise that I am probably struggling to accept it more than I allow even myself to believe.

Cleaning Lucy’s Teeth

Perhaps I am over-dramatising the importance of the next step. I’ve really convinced myself that it is either full removal, meaning I can still be cured, or nothing. Not nothing meaning that the surgeons won’t do anything, but nothing that could lead to me being cured. I’m sure it isn’t that straightforward, but the oncologist couldn’t give me any answers of substance when I put the questions to him. As opposed to accepting that he really may not know, I can’t fight the thought that he does know, but it isn’t down to him to break the news to me. I’m sure that I am being paranoid and just not recognising that my brain is moving into a new phase of contemplation, paranoia, but I never got any reassurance from him that allows me to easily shrug off those thoughts. I’m heading to Dorset on Wednesday anyway. Lets see if the sand on the beaches, sound of the ocean and salty breeze helps improve how I am feeling about it all. There’s only one problem with that – I hate the sea and everything in it. It is lovely to look at, though.

Treatment Cycle 6 + 1

The Chemotherapy Diaries

So it has happened. I’m in chemotherapy cycle 6 + 1 (AKA Cycle 7). The original plan for my chemotherapy was to do 6 sessions before attending a scan to check how things were going with the tumour. After a few chemotherapy sessions, the oncologist told me about the tumour marker CA 19-9, measured in the fortnightly blood tests I do before my treatment day. My CA 19-9 had started at 16,000 in November when I started treatment. It then quickly shot down to around 5,000 in December. The last time I heard about it was in January, and it was around 800 then. I brought the CA 19-9 marker up during a Pancreatic Cancer UK call, and the nurses seemed very optimistic about the drop, especially given the short amount of time it took for the figure to drop this much. They did also concede that 16,000 is high. It was around here that I had a treatment day. The nurse informed me that I was down to have 12 cycles. I either had not initially understood my treatment plan, or my oncology team had decided to extend, given the ‘positive indicators’ from my blood results. I’m not sure which one is true. I haven’t heard anything about the CA 19-9 level in a while, so I’m unsure what it is now.

Chemotherapy cycle 7 started with a few differences from the established treatment morning routine. My mum and Anna usually take me, but Anna was away with some friends in The Cotswolds, and my mum was stuck in London, as the storms had shut down the entire train network. That meant my dad taking me this time. I drove us there whilst puppy Lucy sat on his lap; it’s hard to know what he really thinks of this. He generally says positive things about her, so I think he has a soft spot for her.

Upon arriving at the hospital, I grabbed a new mask, disinfected my hands and reported to the volunteers at the door that I had not developed any Covid symptoms since I last attended the hospital, about 21 hours ago, for my blood appointment. I then went to the appropriate department and signed in at the desk. The process for treatment days at The Christie is to hand in your blue card upon arrival. All appointments that you must attend over the next 2 weeks are then filled in, and the card is returned to you. Sometimes they return it to you minutes later as you sit waiting for your name to come up on the screen; other times, they will find you on the chemotherapy ward and hand it back to you during treatment, and I have once had to go searching for it after finishing chemotherapy by asking back at the desk. It keeps you on your feet. This day, I had barely sat down in the waiting area when the receptionist approached armed with my blue card. “Here you go, love,” she smiled as she handed me the card. “Ah, that was very quick!” I smiled back.

I opened the card and looked at the appointments. ‘Thursday 3rd March: 10:45 Bloods. 13:00 Appointment’. My stomach immediately felt like it had concrete in it. My head sat heavily on my shoulders, and a cloud of dread came over me. It is amazing how little you can do to control your bodily reactions to these things. I’ve known that my scan date is Monday, February 28th, for a few weeks now, so it was inevitable that the follow-up appointment date would be provided soon. I’m not sure why reading it felt so uncomfortable. The final piece of the puzzle that determines what will happen to me over the next 3, 6, 12 months? I’m not even sure what scale the results of the scan could determine; I guess anything from the tumour spreading (which I think is quite unlikely given how quickly I was put into chemotherapy treatment) to it has been reduced in the exact way we needed it to, and I can be put forward for surgery. Both are scary for different reasons, but I am definitely hoping for something closer to the latter, not the former. There will be a whole spectrum of results that sit between those 2 extremes, though, I imagine.

My name came up about 5 minutes later. I’d spent that time texting my family Whatsapp group and a few close friends. The news had really rocked me; I didn’t feel like going upstairs and being put through 5 hours of chemotherapy. Once I was up there, though, armed with this weeks cake (my specialist Pineapple Upside-Down), I quickly got into it again. The nurses were all extremely complimentary about the cake, which helped my fragile baking ego. I was getting comments all morning about it. The other thing that helped was that I was sitting next to a woman fighting bowel and liver cancer who was fantastic company. We chatted a lot for the 3 hours that our treatments coincided. She told me about a friend of hers who had just recovered from pancreatic cancer at The Christie. It sounded like her friend’s initial diagnosis was bleak, being told she had 8 months to live initially. Fortunately, she went onto the Folfirinox chemotherapy, the same type that I am on, and it was extremely effective in reducing the tumour size. Her Whipple procedure had been very successful, and she was now 2 years clear. It was a positive story, especially after receiving the follow-up consultation date for the scan results.

She also spoke of a similar scenario to me with her diagnosis. I can’t remember what hospital she said she was diagnosed at. I think it was one in greater manchester, but she said that her cancer diagnosis was also delivered as a death sentence. Only when she got to The Christie did she meet any hope or positivity about the possibility of beating the cancer. The more people I speak to, the more this story seems to be some form of endemic in the cancer diagnosis field. I wonder why. Perhaps it is simply down to contextual factors: the doctors are there to deliver the initial bad news, which is fairly commonly seen as the worst type of news. We spend our lives hearing about cancer and how deadly it is – it is not easy to deliver a cancer diagnosis to anyone; I appreciate that. The oncology team perhaps has a more positive role in knowing the diagnosis when they enter the process, so they have the luxury of manoeuvring a plan to fight it and instil some hope (where possible). She spoke of going to therapy and being diagnosed with PTSD due to how she was diagnosed; I sympathised with her a lot. I feel the exact same way about how I was diagnosed.

I had my normal struggle during bag number 2, of course. Sweat was dripping off me throughout it for some reason and I felt quite nauseous. I say ‘for some reason’ as if that doesn’t normally happen, but it did seem particularly pronounced on Saturday. By the time I was finished, I was ready to run out of the hospital. I just wanted to be home. My mum had managed to get an early train back and was there to pick me up; routine restored. That meant dad got off the return trip shift.

The first few days of the cycle have been tough. I’ve felt a bit out of it, and I’m regularly experiencing indigestion again, similar to the issues I had before being diagnosed. It does feel more painful at the minute, though. My body is also particularly fatigued. All of it isn’t too worrying; I’ve had far worse symptoms in the past. I just need to get through these first few days then it should get better. There was a nice little pick me up in the form of the below biscuits sent to me by the lovely Larissa. They were to congratulate me on finishing the 40 miles in February challenge. Very cute indeed – thank you so much! The biscuits were delicious too. We tried to get a picture of them with Lucy in the background, but she wasn’t particularly interested in paying attention to the camera.

Biscuits from Larissa!

Scan-xiety – 10 Days to Go

The Road to Recovery

Me after running 10K in Storm Eunice

The Road to Recovery series has been quiet for a while now. During my first appointment at The Christie, I was warned that things tend to go quiet during chemotherapy. You get into a routine that synchronises with your chemotherapy cycle. That means fewer face to face appointments, fewer scans to determine the issue and a period of relative normality. Not the normal normality, of course, but the normalcy that is your chemotherapy cycle. For me, this is generally the following.

Treatment is on Saturday, which takes 5 to 6 hours and results in me going home with a line attached to a bottle that is full of chemotherapy drugs. My line is then removed by the district nurses on Monday. I feel especially ill, sick and tired until Wednesday or Thursday. Mouth ulcers form around Friday and remain until Tuesday. Wednesday or Friday I do bloods (if I have a call with the oncologist in that cycle, then I do them Wednesday otherwise they are on Friday). Thursday is my meeting with the oncologist to discuss how things are going (if I have one scheduled). Then it all repeats again on Saturday when I am back for more chemotherapy at the hospital. Sometimes there are ad hoc things in-between, but not too often with the oncology team. My other commitments are mostly attending various groups and/or calls with charities like Pancreatic Cancer UK.

It sounds a bit weird to put it like this, but the cycle does make time fly. It’s tempting to use the phrase ‘Time flies when you’re having fun’, but that would be very facetious of me. I wouldn’t do such a thing. There is plenty of fun to be had amongst all the cancer chaos, though. The staff at The Christie are always friendly and enjoy having a laugh with you. I mostly enjoy the car rides to the hospital, usually done by my mum, by Anna, or both if I’m particularly lucky that day. I say mostly because the car ride home from treatment days is awful, and I never enjoy that one, even if puppy Lucy is usually in the car to keep me company. I’m feeling too hot, sick and tired to deal with any of it.

There are also the little pieces of comedy that generally float around the world if you’re looking for them. Today, as I sat waiting to be called into my blood appointment, the name ‘Stanley Blood’ came up on the screen. Right place, right time, I guess. He was made for this. I sat waiting, fantasising about how he was probably a veteran of the hospital. In my head, I saw him attending his 1000th appointment and being given the holy title of ‘Blood’ for his long servitude and bravery to bloods. There is a big banner above the door going into the bloods office; all of the nursing staff and patients are clapping and whooping as he sits in the chair and exposes his arm. It was a stupid image, but it kept me amused for a few minutes. I didn’t even see what the actual guy looked like because I was humouring so many thoughts.

He probably gets sick of people commenting on it in reality. It must happen all of the time. I regularly get called out by the staff for hating having my blood taken but having plenty of tattoos. “How can you hate doing your blood when you’re covered in tattoos,” they ask in playful bewilderment. “I’m a complex person; what can I say,” I quip back, looking into the distance and squinting slightly.

Today I had a funny exchange with my nurse about my tattoos. I usually let the nurses take blood from my right arm. This nurse was sat on the left side, though. As I sat down, I told her that I preferred blood being taken from my right arm. I then decided in my mind that this was an opportunity for me to grow as a person. “Actually, let’s do it from the left.” The stoic mentality is clearly working; I’m becoming a beast of burden. As I rolled my sleeve up, my ensō tattoo was exposed. “I like your tattoo,” she said, not ready for the depths I was about to take the conversation to. “It’s called an ensō. It’s my most recent tattoo; I only got it a few weeks before I first went into the hospital. The symbol is used a lot by people who practice zen. When it isn’t a closed circle, it’s supposed to represent the ability for movement and change, an appreciation of imperfection. It’s how I know the universe was fucking with me when I was diagnosed.” She laughed, and I was happy because I could see her attention trailing off towards the end of the lecture. She extracted my blood, and everything was fine. I tried to look in her mouth when she smiled to see if she had any vampire teeth, but she didn’t. I’m sure it’s a prerequisite if you’re going to take a job as a blood nurse. I can’t think how else they’d convince people to stab needles into others veins all day. It totally grosses me out.

(They’re amazing people, this is all written in jest).

My ensō tattoo next to my scar from the bloods appointment today

My chemotherapy routine is about to be disrupted slightly, though. In 10 days, on February 28th at 8:30am, I will be attending the all-important CT progress scan. This will be the first time that my tumour has had any imaging since my last scan in October, leading to the prioritisation of my PET scan. The PET scan then lead to the prioritisation of my endoscopy, which determined my ailment. Pancreatic Cancer. Damn Daniel, wasn’t that a shock? It feels like a lifetime ago. I can’t remember what it was like to not have pancreatic cancer now, but that’s for another blog post. The scan also happens to be the same week as my birthday, which is March 5th. Guess when my next treatment day is after tomorrow… March 5th! That means I may end up having my scan, getting the results and then having my birthday/treatment all in 1 week. What a rollercoaster it is lining up to be!

I’m still undecided how I’m feeling about the scan. As the chemotherapy feels like it’s going well, I do have a quiet confidence that this has to be a good thing. That also worries me, though, as confidence is wasted on cancer. I went into A&E initially confident that I’d be prescribed some pills or diagnosed with some minor food allergy, and that would be that. My symptoms seemed minor to me – I frequently got an uncomfortable indigestion feeling in the evening when I went to bed, which remained until I got out of bed in the morning. It wasn’t something I was that apprehensive about. Even when I started getting the bouts of severe abdominal pain, I still thought it was just an elevated form of the symptoms with the same root cause. I guess it was, technically, but I thought the root cause wasn’t a huge problem, so this didn’t worry me too much either; I just wanted it sorted. At the time, my remedy was to try to stop eating late. I suspected that it was a wheat allergy, so I was trying to avoid eating as much bread. It is quite laughable now I know what was actually going on, but naivety is a good technique for self-preservation, and I was exercising it to its full capacity.

What I do know is that the scan will allow us to know what is really going on with the tumour, no matter how good or bad. From there, my amazing oncology team can react in whatever way they deem most effective, and it will hopefully be another step towards getting better. Only time will tell whether it is radiotherapy, chemotherapy (if doing more chemotherapy is even an option; I’m not really sure), nano-knife or surgery (which would be an incredible outcome). Right now the tumour exists in a similar state to Schrödinger’s Cat in my mind – it has both spread out of control and completely disappeared due to the chemotherapy. It’s a confusing state to be in, so it will be good to get a concrete understanding of where we’re at.

As of today, I decided to arrive 20 minutes early to my blood appointment on purpose. This way, I thought, if I have to wait for an hour, as I regularly do, I’ll be able to get back out 20 minutes earlier than I would have anyway. This would mean me getting home slightly earlier, allowing me to run before lunch instead of being too hungry and having to wait until after. I would then have to wait for my food to digest, meaning I wouldn’t be able to go until about 16:00. The good news is that the plan was a resounding success. I had to wait 45 minutes and was back on the road by 11:30. I then got home by 12:20 and was ready to face Storm Eunice by 13:00.

Honestly, I impressed myself today with the run. I managed to run 10K in a storm, all thanks to my new Asics running jacket that arrived today. An elastic band in the hood stops it from blowing down in the wind, and there was plenty of wind today to test whether it worked. It really did work, too! Everything about the jacket did – I was warm, dry, comfortable, AND it looks good. On top of that, I got my chemotherapy 10K PB.

Facing the full wrath of Storm Eunice

As I ran thinking about how good the jacket was and how horrible the weather was, I decided I’d try and tweet Asics when I got home, encouraging them to donate to my Run 40 campaign in return for my field testing of their product. I did just that, and you can find the Tweet below. I’m 99% certain it won’t work but you can’t blame a guy for trying. Feel free to like and share it if you’re on Twitter and want to help!

The tweet to Asics

So, it will probably be a stressful period as the scan date approaches. Tomorrow is another chemotherapy day, which is my current focus. Get through the weekend, then worry about whatever comes next. I have to remind myself that the scan can also bring good news, not just bad; sometimes, it is easy to forget that. Like I said, though, I feel confident for now. I’m not struggling to eat, I find myself having more energy than ever and generally, the cycles are manageable. All of that cannot hurt me, no matter what the scan results reveal.

I’ve noticed that I have started to really mix the ‘lifestyle’ type updates into the blog posts no matter the topic I am talking about. I’m calling this my USP for now, but perhaps I will try and separate them out more. Hope you all have a good Friday! This song came on my playlist on my drive home from The Christie, and it gave me some great vibes. Hopefully, you get some from it too.

Practice What You Preach

The family climbing Snowdon for my mum’s birthday, 2017

I preach a lot on this blog, but I do not always follow my own mantras. On Monday 31st Jan, I was cooking with my mum and Anna in the kitchen. Together, we were all preparing some food for that evening. My mum had gotten some beefburgers out of the freezer and was attempting to separate 2 that were attached together. She decided to try and do this with a knife, which is surely against all Knife Safety 101 guidelines. I wasn’t privy to exactly what happened next, I just heard a screech from behind me. Upon turning around, I saw my mum holding her left thumb, and I saw blood.

“It isn’t too bad, don’t worry,” she said as she wrapped some kitchen paper around it. Anna wasn’t convinced, and I was already panicking. “Are you sure, mum?” I asked. She lifted the kitchen roll from her hand and showed the wound. It was deep and bleeding. A lot. “You need to go to the hospital now!” I wasn’t doing a great job of being brave, staying strong, controlling what I can control, anything really. I was shitting it, to put it one way.

After some debating about whether Accident & Emergency or a drop-in centre was more appropriate, my dad took her to A&E. To our amazement, they were back after about 2 hours, which is very fast for a UK A&E department. Her thumb had bled a lot at the hospital, apparently. The wound was a ‘good bad’ scenario in the end. She hadn’t damaged any nerve endings, no ligaments were severed, and it wasn’t too close to the nail. The nurse had closed the wound using Steri-strips and then had bandaged it up. That was it. She was told to leave the bandage on until Friday, then take it off. I’d be leaving it on for at least another week I thought to myself, but I’d also faint if I looked at that wound for too long, so I’m probably not a force of reason around the issue. To my amazement, she took it off last Friday, and it has healed impressively given the wound.

So my confession is this, there was a minor emergency, and I responded like it was a major disaster. My mind was running a million scenarios – the wound would get infected as she was dealing with meat at the time, that she had irreversibly severed an important part of her thumb and would lose movement, etc., ad infinitum. It felt like the mental equivalent of doomscrolling.

It made me reflect on what I ask of my close family and friends in relation to my cancer diagnosis. I’ve said a few times that I think the situation is worse for them than for me, and I am absolutely certain that is the case now. The entire time my mum was at the hospital, and for a couple of hours after she got back, my brain was in emergency mode. It wouldn’t settle or accept that the situation was ok. I replayed what happened to her over and over in my head, pictured her in pain at A&E, felt her anguish as the nurse tried to treat it. But it was all false; my mum didn’t seem phased by any of it. It is proof that practising what you preach can be extremely difficult, especially in emotionally charged situations.

Of course, it is impossible to hold yourself to such a standard all of the time. I can think of few people I know who would respond calmly to an array of bad, stressful situations. There are some people I know that I suspect would respond with a very calm, collected approach, but I am also sure that if I looked up ‘traits of a sociopath’, these characteristics would all appear on the list. That’s how I make myself feel better about my lack of those traits, anyway.

I’ve spoken in previous blogs about how I have a tendency to be a pessimist in the face of stressful situations. It doesn’t last long, and I have managed to get much better at fighting it, but my first response to stressful situations is seldom positivity. I need the panic to wash over me before I can inject a level of measuredness in my response. After being diagnosed, I spent a week certain that I would die and thought that the task at hand was to accept this fact. The idea that I could fight to stay alive took a while to sink in and feel realistic. I needed some help from the doctors, too – I needed to hear some positive words that told me it was possible, which I eventually got from my specialist at The Christie. This is an extreme example, though, and it takes a solid mind to respond productively to such news. Especially when the news was so unexpected.

I know myself, though, and I know that the way I responded to the situation with my mum was very ‘me’. I’m really not sure how I would deal with a family member or close friend being diagnosed with cancer like I have. It makes me respect all of those around me who are doing such an incredible job, of which there truly are too many to start listing by name. The support comes from all angles, including from people who only know me through social media and the blog. I have met amazing people and receive uplifting, wondering comments daily through the blog, Twitter and the Just Giving page for the Run 40 Campaign. But the real support, the nitty-gritty support where I have to be spoken down from awful places or propped up after a hard day, can only come from those around you. It can be tough to reach out and say exactly how you are feeling to those people who are so close to you, though.

That is where the blog is strangely helpful. Sometimes, I catch myself off guard with the things I write in these posts. Sometimes I will throw myself at them, feeling that I know exactly what the message needs to be and just write it. It happened most recently with the World Cancer Day post. After running 5K and obsessively thinking about the fact that it was World Cancer Day, I felt that I had essentially written it in my head. All I had to do was get home, shower, open up my laptop and write. The rest was history. I barely thought about a single word in the post and it all just came together.

In other posts, however, I don’t really know what I am going to say; I just know that I am feeling a certain way. On these days, the posts can take several twists and turns. In these posts, I realise more about what is bothering me than if I had not written at all. By writing, I allow myself to explore some of the parts of my subconscious that I perhaps don’t allow myself to access so regularly and readily without the blog. It does concern me, though, as I regularly see my mum crying as she reads the posts, or I will receive messages after releasing a post asking if I am Ok. It can be hard to strike a balance. I want to get across the positive feeling, the mental athletics and the ‘better’ sides of the cancer experience, but it also feels important to capture those other, more authentic moments of hardship.

What I can say is that I have had many comments from close friends and family who say the blog is very ‘me’ and reads as such. This is something I really am proud of. The inception of the idea for the blog came from quite a bleak place, really. I was lying in the hospital bed the night after being diagnosed with pancreatic cancer. It was late – probably 3am, 4am. I was contemplating the emergency procedure that I needed to have in about 12 hours to install a stent in my bile duct. I was terrified of the cancer diagnosis that I had been informed of only 8 hours prior. As I said earlier in this post, I was quite certain my task was to deal with my own mortality at this stage.

Visiting Slovakia with friends, 2017

Suddenly, I felt obsessed with my legacy, not in an egotistical fashion, but in a far more human sense. I felt sure that I would die of cancer during this period at the hospital, just after diagnosis. I wasn’t sure when, but I felt like the doctors had little hope for me, and I wasn’t in a position to start fashioning any myself at this point. I was in shock. I wanted to do something that would harbour a piece of the true essence of me for my family and friends. I’m not the sort of person who would feel confident enough to vlog – I hate my voice, my mannerisms, and it would come off very disingenuous. I decided that writing was the most effective way of leaving a piece of myself to those who cared enough to read. I hoped that it would allow them to get into my head, to hear my voice again and relive the things that make me ‘me’. Every time I get told that the blog has my humour, voice, etc., I feel I am fulfilling that brief. It feels good.

As I develop in my diagnosis and manage to piece together more hope for survival, I find myself desiring that the blog serves more of a purpose than just this. It seems to be helping people for a multitude of reasons. This, of course, makes me feel extremely fulfilled and happy too. The fact that it extends beyond just my family and friends consuming these words is a wonderful thing, and I hope whatever currently interests you in the content continues to be a pull.

But, to bring this back to my original point… The situation with my mum has really proved to me what an amazing job all of my close friends and family are doing in dealing with the diagnosis. For all the support, love and unfaltering determination that you all show, you make me learn so much more about myself and my ability to fight through the difficulties of this situation. I am only the way I am because of all of you, so every compliment to my character is directly attributable back to you all. Though I am glad to not be finding out how I would respond to any close family or friends receiving a cancer diagnosis, I really hope that the way that I am coping with it offers you some solace, no matter what happens in the end.

Some of the Godley’s together in London, 2018

Some Positive News

The oncologist called me yesterday with some good news. The tumour indicators in my blood are down from 15,000 to just over 900. Feel confused about what that means? You aren’t alone, but it sounds good, doesn’t it? “It’s the most positive sign that we can have at this stage that the chemotherapy is having an effect on the tumour,” he said. It was followed by the usual caveats and expectation-managing jargon, of course. “It doesn’t guarantee that the scan will show a reduction in the size of the tumour,” I tried to resist rolling my eyes. Just give me my 5 minutes of unabated hope, damn it.

It is the first ‘breakthrough’ that I’ve experienced. I realise that it is not a true breakthrough, but it is the first piece of positive news I have received in The Road to Recovery. I’m reserving my right to refer to it as a breakthrough. I may even say it has given me some hope… but that would be far too eager. Being truthful, though, it does provide me with hope, which also worries me. I managed to relieve myself of some positivity last night, though. What a relief…

Waking up in the night has become a benign reality of my life these days. Usually, I wake up, look at a few things on my phone, put it down again, then fall back asleep. Simples. Occasionally I get a night like last night, though, where I wake up and don’t sleep again. I sat up in bed and knew it was one of these times. I left the bedroom and came downstairs to the lounge, wrapped myself in a blanket, and sat under cover of darkness for a while. Initially, I thought I may fall asleep if I gave myself nothing to do, but it wasn’t to be. I grabbed my phone and decided it was the perfect time to start Googling about the Whipple’s Procedure for some reason unknown to me.

The Whipple’s Procedure is the only known cure for pancreatic cancer. Or so I thought; I read a story on Pancreatic Cancer Action’s website where a woman named June Simpson was cured using chemotherapy alone, which is interesting. Perhaps this is a rarity, so oncology teams are not generally speaking to patients about it. I will be investigating it further, though, now back to the Whipple.

I sat reading about the procedure, feeling any positivity I had mustered drain from my being. Despite its cheery sounding name, it is a scary procedure. The head of the pancreas, gall bladder, some of the bile duct and the top of the small intestine is removed. I believe its primary aim is to remove as much of the area as possible to give the best chance of removing all cancerous cells and stopping any more tumours from growing. Pancreatic cancer is an aggressive beast, though, and I believe it is common for a tumour to return where some cells are missed. That is why it is so crucial for chemotherapy to provide visible results against the tumour, as it proves that it is having a positive effect on getting rid of the cancer cells.

Next up, I tried to find some success stories of younger people who have been through the procedure. This, unfortunately, didn’t turn up many results either. I’m still not sure if this is because my case is rare. Perhaps the procedure has not been around long enough to have such a case. I saw mention of it in a paper from the 80s, though, which makes me think there should be a case study of a 30 or 40-something getting it and surviving for 30 years. I didn’t find it if it existed, and the dread was setting in. The middle of the night blues was upon me, and there wasn’t anything I could do about it. It isn’t fun when it’s your cancer on your mind. I did what any respectable 28 year old would do and rang my mum. She was upstairs in bed. I asked her to come down and sit with me. Nice Dan, you’re officially 12 years old again. I should have asked for a hot chocolate and sat in anticipation, waiting to see if she put marshmallows in just to make it extra special. We sat up together until 7am when I attempted to get more sleep.

I’m now left with a plethora of questions about it all. Does the Whipple procedure significantly impact your life expectancy but allow for a longer life than leaving the cancer to spread out of control? Can you survive for a long time after having the Whipple procedure, or is this currently unknown? Is it possible that chemotherapy alone can cure pancreatic cancer? I know that I can ask my oncologist these questions, but I would really appreciate some feedback from other survivors or people who have experience with pancreatic cancer. The internet is dangerous when wanting straight answers, especially where cancer is involved. I did not have much to show for my web-wandering last night, and it left me feeling somewhat overwhelmed about everything. I have yet to find another example of a 28-year-old getting pancreatic cancer at all, but I was warned by the oncologist that this was an extremely unusual case.

But let’s finish by emphasising the positives here. My tumour indicators are down, and we have to assume that is good. The oncologist certainly thought so. The first scan will be booked for the week commencing February 7th, just after my 6th session of chemotherapy. I should receive the results that same week. He also informed me that I would continue with chemotherapy, irrespective of the scan results. I thought this would dishearten me, but the chemotherapy gives me confidence that I am fighting back against the cancer. All of the negatives I feel on my body are indicators that those cells are struggling, which gives me great pleasure. I’d take 5 years of chemotherapy if it was likely to give me a life afterwards, so bring it on. I’ve run 100km in the hilly Scottish countryside in November; I can sit around my house feeling crap quite comfortably. So fuck you, cancer.

The following words were written to me on a card by some very close family friends. They’re some of the most powerful words I have received. I like to remember them when I am feeling down, and they always lift my mood again.

“You have been assigned this mountain to show others it can be moved.

Know that cancer is only going to be a chapter in your life, not the whole story.”