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.

Results Day: The End of Chemotherapy Scan

The Road to Recovery

Covid Check Mid-Cooking

I woke up earlier than usual this morning. My eyes were reluctant to open, but my brain had made up its mind. Time to get up. I searched for my phone with one eye half-open; the other one hadn’t got the memo yet. Sunlight was peering through a gap in the curtains so I knew it wasn’t too early. 5:58. Ok, it was earlier than I thought.

Lucy the puppy was snoring and I could feel her body heat against my leg. She likes to sleep underneath the sheets, either in between my legs or between Anna and I. Sometimes we go to sleep with her in the bed, then wake up and she’s in her own bed on the floor, fast asleep. We used to wonder what we did to insult her during the night, but now we tell ourselves that she was probably too warm. I think it’s Anna’s snoring personally, but I do have a tendency to move a lot in my sleep so it might be that. Maybe I’m always dreaming of being a ninja, spin-kicking cancer in its ugly face. If that is the case, I haven’t remembered a second of the dreams. Maybe one day I’ll remember it all and experience it so lucidly that it feels like it is really happening. For a few hours, I’ll be content, beating up cancer with no regard for poor Lucy in between my legs. She’d experience each kick as a sudden jolt and eventually decide she is safer in her own bed. I’d try and fight the urge to wake up in the morning, reluctantly doing so in the end. “You were moving a lot in your dreams again,” Anna would say. I’d smirk to myself – “I was kicking cancer’s ass.”

The appointment with the oncology team wasn’t until 15:15. Before that, I had a bloods appointment scheduled for 14.15. That means that we didn’t need to leave the house until around 13:15. I knew I had time to kill, so I made a few plans in the morning to keep myself distracted. Those plans didn’t account for me waking up at 6:00am. They expected an easy-breezy wakeup time of 8:00, maybe even 9:00… make sure I’m well-rested for the big appointment – ready for any adrenaline hikes or dives that may kick in. 6:00am was unacceptable. I got up and went to the bathroom, then came back to find Lucy had gotten out of the bed and gone into her own. Proof – it was Anna’s fault all along, not my sleep-kicking. My only fault had been going to the bathroom…which meant I had moved…which may have disturbed her into going into her own bed…damn, maybe the evidence isn’t as conclusive as I thought. Luckily, I then slipped in and out of sleep until about 7:20. Better, but not perfect.

Once I got out of bed, I fumbled around the house a bit – cleaning this plate, playing with that dog. I then settled onto the sofa to watch a few YouTube videos. I can waste an impressive amount of time on YouTube. If it was a sport, I’d be in the regionals at least, maybe even pushing nationals. This session was short-lived, as my mum rudely interrupted me – “Want to do yoga, Dan?” she asked in her incredibly polite, caring and enthusiastic tone. “Yes, I’d love to,” I replied. How dare she suggest doing something useful with my time; I proceeded to get the yoga mat out, feeling deeply offended.

I then showered, before heading to ProCook with my good friend Jack. We’ve known each other since I first moved to Alsager when I was about 9 or 10. For all those years we spent playing on his farm, going to gigs together and attending football games, we had a first today. We’ve never been to a cooking store together. Who would have guessed it? He was after a set of knives, and I was flirting with the idea of purchasing a new baking tin. Adult life is one hell of a ride. Jack got his knives, and I left disappointed. They only had 23cm tins and I needed a 20cm one. I hoped this would be the only emotional turmoil I’d experience today, but there was a certain event lingering in the air that was threatening to topple it. I should probably just move on to the exciting bit, shouldn’t I?

We got to the hospital at around 14:00. Anna and my mum found a spot in the cafe, whilst I went and signed in at the desk. It was the receptionist that knew me well. For the first time ever, I approached and she simply said “Hey Daniel. Bloods and a meeting with your consultant today, correct? You’re all checked in.” Usually, you have to reel off your name, date of birth, home address and confirm that you are at the same GP surgery. I had to check if my mouth was open I was so shocked. So this is what it’s like to be a local at your local pub? You walk in to be greeted by a smile before someone tells you exactly what you were just about to order. I’ve never got to that level of familiarity before. It felt good. I’m going to start drinking in my local pub more.

I remember learning about pathetic fallacy in English when I was in school. The teacher used a scene from a film to help explain the concept. It was a sad scene, and as the actor sat there crying, the shot panned to a storm outside the window. She said that the weather was being used to emphasise the human emotion being displayed. This was called pathetic fallacy – the use of non-human elements to express or emphasise human emotions being portrayed in the scene. As we sat waiting for my name to pop up on the appointment screen, I couldn’t help but notice that it was torrentially raining outside. It had been sunny earlier in the day. I hoped this wasn’t a reflection of the results to come; if it was, there was a higher power mocking me today. That higher power was probably also responsible for giving me the cancer in the first place, so it was most definitely not the worst thing they’ve ever done to spite me. Perhaps it is the kind of humour I appreciate – the thought alone made me chuckle a little bit in a cynical kind of way.

The bloods appointment was approximately 30 minutes later than planned, which is reasonable. It went fine – we chatted about my tattoos and I complimented a few of hers. She told me that the one on her arm cost her £13 because her local tattoo shop does random tattoos for £13 on Friday the 13th. I remember my best friend Luke telling me about that once; it’s quite a funny concept. As if I needed more proof that blood nurses were vampires – this one brought up Friday the 13th out of nowhere. She’s mocking me… She managed not to lick her lips too obviously as she pulled the blood from my veins. I did notice her getting a little bit excited, though. She thought I hadn’t noticed, but I see everything with these monsters. I counted the canisters of my blood before walking out of the room – she had filled four. Is that a light snack or an evening meal? One day I’ll just ask, I’m sure they’re happy to chat about it once they know that the secret is out.

I made my way back to our spot in the cafe. More waiting, more rain, more anxiety. It was building fast now. My stomach was feeling tighter and I was getting restless. Finally – my name popped up. We made our way to consultant room 18. The nurse took my weight – 76.2kg – checked my blood pressure – a little high but not concerning given the context of the meeting – then she left Anna and me to the confines of the office. Nothing left to say, nowhere to hide. Approximately ten minutes later, the oncologist entered and introduced himself. Here we go…

In summary – the results were not bad. He stated this quite plainly as he began. “I don’t have any bad news for you today,” he said. I think those words may have been more reassuring in his head. In reality, that immediately said to me “he doesn’t have good news for you either, Dan. Prepare yourself,” and I was right to think that – he didn’t have any decisively good news to give us. In fact, I learned something that has worried me quite a lot, but I’ll come back to that.

The tumour has not shrunk any further since the halfway scan. My tumour markers in my blood are very low, which he emphasised was a good thing, but the main tumour seems to have stabilised at 2.1cm. That means I still have a net reduction in tumour size over the whole of my treatment, but it was disappointing news. The thing that I learned which worried me was in regards to what has previously been called the ‘cyst’. There had been mention of a cyst throughout the period when the doctors were trying to diagnose me. At first, it was the cyst causing all the problems, then the cyst had given me pancreatitis, and then they stated the cyst may have a soft tumour on it. The last time I heard about it was when I was finally diagnosed with pancreatic cancer at King’s hospital in London. I had asked the doctor who delivered the diagnosis if the cyst was in fact the tumour, but he had told me to forget about the cyst as it is no longer important. The oncologist today told me that they did not know what this “mass” was, but that it had reduced in size slightly. He said this could only be a good thing, but what concerned me was the whole ‘not knowing what this ‘mass’ actually was’ thing. Apparently, they know it is full of liquid, but they do not fully understand whether it is another tumour, whether it is a cyst with a bit of tumour attached to it or any other infinite amount of possibilities (the last part is my own interpretation). Hmm, concerning.

He told me that the case is being handed to the surgeons at Manchester Royal Infirmary and that if I do not hear from them within a month, to contact my surgeon’s secretary. That was it – that was the news. It felt extremely deflating, both because we did not get any news which felt overtly positive, but also because we had misunderstood the process again. We thought we would be getting more information on the next steps, but all we were told was that my team of surgeons will review the case and make a decision on what is next then contact me. That may be fully removing both the shady ‘mass’ and the tumour in surgery, which would be best, or it may be some lesser version of that, perhaps using the Nano-knife technique instead. I asked if anything but outright removal would be with a view to extend my life only and not cure, but he couldn’t answer as he was not sure. There were many things he couldn’t answer because he was not a surgeon. It makes sense, it just wasn’t what I expected. I thought The Christie managed my case, and the surgeons get involved in it when they are required. If that was the case, it would be reasonable to assume the oncologists would be able to answer more of the questions. That is not the case, though, so I understand that the oncologist’s role is now to hand over to the surgeons who will take the lead on the next part.

It was hard to not feel deflated. We were all upset as we left the hospital – knowing that we should feel positive overall but also feeling like we hadn’t quite got the final hammer blow that we wanted against the tumour. Now more waiting, and not knowing whether the next meeting will be when we find out the next steps, or if that meeting will be another ‘we need to discuss this further before making a decision’ type of meeting. The journey home was long and the traffic was terrible as it was rush hour. We didn’t speak a lot in the hour and a half it took.

As I got in the car, I’d just played whatever was last played on my Spotify. It was the ‘Moody’ mix playlist that Spotify makes automatically for me – perhaps not the best choice given the context. At one point, Bon Iver’s Holocene came on, which is a song I always find very emotional and moving anyway. I sat listening to him sing the words “And at once I knew, I was not magnificent,” and found it hard not to buckle under the weight of the situation. The song conjures up a lot of emotion in me at the best of times, but it felt extra hard to process during this moment. I’ve always found it strangely comforting too, though. The lyrics mean different things to me at different times. Today, it reminded me that I am another person trying to fight cancer, hoping I’ll have plenty more years to enjoy with my family, fiancee, friends and my dog. I want to see my siblings get married and have children, I want to buy a house in the countryside, push for a better job, support my friends when they need me, run 100 miles just so I can say that I could, and did. I want to see my parents grow old and be there for them as they do. None of it feels as tangible anymore; it feels like a far-fetched dream, as if I am asking to win the lottery. But I’m not magnificent and neither is my story – there are thousands of people attending appointments at The Christie every day who are suffering and hoping for the same things. There have also been tens, maybe hundreds of thousands who have hoped for the same things walking around that hospital’s corridors. A lot of them will have gotten their wish, but there are many who didn’t too.

So, as the chemotherapy fog gradually clears over the next few weeks, I walk into a new sort of fog. No longer under that cover of protection that chemotherapy offers, I’m forced to address new realities about the future. Whilst on chemotherapy, you have a specific battle to refer to. You have side effects, illnesses and symptoms to fight. You feel like you’re in a struggle, and although that struggle sucks, it is real and you know it is for the best. There’s a number you can call whenever you need help, where someone picks up quickly and reassures you, telling you where to go and what to do. I didn’t realise that at the end of chemotherapy, I’d actually not be under the care of The Christie anymore. Now, The Christie is writing a referral to Manchester Royal Infirmary, who will be the new custodians of my case for the foreseeable future. Of course, this is a good thing. It is the next step in the journey, and a full removal of the tumour is still on the cards. It just feels like a shock and I’m struggling to come to terms with it. New faces, new processes, new unknowns. I’ll adapt to it, I know I will. It just leaves you feeling stupid – like you should have realised that this was the case, but you didn’t because you didn’t listen closely enough or weren’t smart enough to comprehend it. I’m getting the same self-critical feeling about the lack of positive progress in the second half of the treatment cycle – was it my diet, the fact that I couldn’t exercise as much over the past 3 months, did I not sleep enough to allow the chemotherapy to be as effective? It all feels like my fault, and now I’m paying for it.

Whatever happens, I know that I have incredible support around me. In reality, the news today was always going to ultimately be that it is now being passed to the surgeons for review and they will decide the next steps. I know that, but it doesn’t make it feel any better. We didn’t walk away with a big headline – THE TUMOUR HAS SHRUNK. Instead, we walked away with more questions and fewer answers. But it is back to being patient and embracing the unknown. The chemotherapy did shrink the tumour overall and even managed to shrink the unknown ‘mass’ too. Just focus on that and hope that the surgeons decide they can get the bastards out. If they can’t, hope that whatever path we are embarking on is still one that leads to being cured, not just being made to be ‘more comfortable’. After all, Nigel’s story tells us that there are people who are magnificent, and I haven’t been fully excluded from that category yet. The sun came out as we waited in traffic on the way back from the hospital – that higher power really is mocking me today. Maybe it’s in jest, communicating that things are going to be fine. Let’s hope so.

Waiting, Waiting…

The Road to Recovery

Mum and I Waiting to be Seen in the Oncology Office

Sometimes I wonder if purgatory is a real place. I sit and ponder over what it could be. Perhaps it’s a play area, but all of the slides are covered in hot tar that never cools down. Maybe it’s your favourite clothing store, but you don’t have any money to purchase anything, and it all looks perfect on you when you try it on. Or perhaps it is a corridor with pictures of everyone you’ve ever met hanging on the walls, but no actual humans to interact with; you spend all of your time trying to find the pictures of the ones you actually cared about, walking the endless hall and trying to remember where they’re located. My number one theory, though, is that it is a hospital waiting area where everyone seems to be seen before you. I think I may have gone there today.

The idea occurred to me today as I sat waiting at The Christie. My bloods appointment was set for 14:15, and my oncology appointment for 15:20. It is rare to have a face to face with your oncology team, and I wasn’t sure what this one was about. I knew it was probably a routine meeting, with my chemotherapy coming to an end. It didn’t stop me from pondering over it. A clinical trial that they want to put me forward for? Maybe my last blood test showed that my cancer has gone and the tumour markers are at 0 – the first case ever where the chemotherapy has completely killed the tumour. Maybe it’s spread… No, surely not. It’s probably just to tell me the potential next steps, which I think I already know. Do I know them? I probably misunderstood them but think I know them. Maybe I do need a meeting with the oncology team; it’s probably good that I’m meeting them then, I’m clearly confused.

I signed in at about 14:10. It wasn’t a receptionist I recognised. As I stated my name, date of birth and address (a standard protocol that you get used to), she looked panicked and asked me to slow down. “Can you tell that I don’t work the desk much?” She said as she frantically looked around the desk. It made me laugh and I told her not to worry. The other receptionist, the one I know well, reassured her and told her to calm down, then winked at me. I repeated the details at her request and she informed me that I was signed in. After thanking her, I awkwardly remained standing in front of her. “I’m so sorry, I’m not trying to test you, but could you also confirm if my treatment time is 9:30 on Saturday?” She rolled her eyes and smiled – “I’ll do my best.” Her best worked and she confirmed it was. I wanted to confirm as it is usually at 8:30. The detail I left out was that I’d lost my appointment card for the second time in 3 weeks, a feat I’m not proud of. My first one lasted me 4 months. I seem to be determined to challenge the hospital’s appointment card budget since then.

The waiting began. I quite like waiting at the hospital. Sometimes I treat myself by not listening to any music and observing the world around me. It’s quite soothing to sit and listen to random conversations. The next thing I know, I’m jolting myself awake with my head propped up by my palm. Apparently, eavesdropping is too soothing. I wouldn’t make a good spy. At least the seats in the waiting area have armrests – I’ve been to hospitals that have horrible little plastic chairs with nothing to fall asleep on. They’re actually quite comfortable at The Christie. I checked the time – only 30 minutes had passed. What to do next?

Anna is working down in London this week so my mum came with me. Due to covid rules, no one has been allowed to attend the hospital with me throughout the time I’ve been receiving treatment. An exception to the rule is that you are allowed to be accompanied by one person when you have face to face appointments. You are actually encouraged to bring someone with you to help support you, and so you can both process the things being said. It is useful as putting the onus on the individual with cancer can be risky business. As a patient, staying focused isn’t always easy as an oncologist sits informing you about this medical procedure that will do that to your tumour and potentially leave you with this and that problem. Sometimes you sit nodding and smiling, thinking about how much you wish the tumour would just fuck the fuck off forever. That doesn’t do you much good, though, does it? Unless the wish works, but it probably won’t.

To my surprise, the hospital seem to have caught up with the rest of the country and relaxed the rules. There is no longer a desk as you walk in, surveying the people who are trying to gain entry to the hospital. It didn’t occur to me until this moment, as I tried to stay awake in the waiting room and pondered what I could do to keep myself conscious. “Oh wait, there’s no one restricting entry to the hospital anymore. I’ll ask my mum to come and join me here!” It was a true BINGO! moment. I’m sure a lightbulb appeared above my head for a second; I hope it didn’t disturb anyone around me in the waiting area.

My mum had been sitting in a cafe across the road from the hospital. She was having a coffee with our friend Julie, the daughter of the infamous Nigel, the 75-year-old pancreatic cancer slayer. He is a mainstay in this blog and it is a mandatory requirement that I bring him up at least once in each five posts. His daughter ain’t bad too. She got me the below card today to celebrate the last chemotherapy session on Saturday. Their family are always doing thoughtful things for us and I wouldn’t have found them without the blog. It is one of its greatest achievements!

Julie’s Lovely Card to Me!

Julie and mum made their way over and appeared in the waiting room a few minutes later. We went to the M&S cafe to wait for my name to appear on the screen. They have screens in that area too but I usually don’t wait there as I have no one to drink a coffee with, so it feels a bit pointless. We sat chatting and having fun. I ate a few oranges and drank a coffee. Still, no name appeared. I was keeping busy, though, so it didn’t matter.

It only started to matter when I noticed a group of the blood nurses walk past in their pedestrian clothes and with their personal bags. “That’s strange,” I thought to myself. It was 15:40 now – over an hour past my planned blood time and 20 minutes past my oncology appointment time. I’d also noticed that no one was being called into the Bloods Offie on the screen anymore. All of the appointments were to the oncology department or The Chemotherapy Ward. “I’m going to ask at the desk and see if everything is Ok.” My mum and Julie encouraged me to do so, and off I went.

No one was waiting at the desk this time, and one of the receptionists was packing away her things. I approached the other one, a different woman from earlier, but still someone I didn’t recognise. “My blood appointment was meant to be at 14:15 but I still haven’t been called. I’m pretty sure I just saw a cohort of the blood nurses leaving. Could you check how much longer it will be?” The receptionist looked concerned. “They all go home at quarter to four. I’m not sure if any of them are still in the office.” She rang through. Luckily, one nurse was still there. The receptionist hung up the phone and started focusing on the computer. “Oh, I’m so sorry, Daniel. You weren’t checked in properly. They didn’t know you were here. Your oncology team are at least an hour behind schedule anyway so it’ll be fine,” she told me to go through to the bloods office.

The nurse was really nice. We chatted about my tattoos and, to my surprise, she guessed what the ’42’ was in reference to on my wrist (it’s a reference to Hitchhikers Guide to the Galaxy, in case you’re wondering). She also laughed at my ‘Are we compelled?’ tattoo. It is on my right arm, right below the crease above the elbow…the exact spot where these blood-suckers extract my blood from every time. “You’d think I got it after I started treatment to stick it to you guys, wouldn’t you?” She laughed. “You aren’t compelled to show up, just don’t expect to beat cancer if you don’t!” It was a good point. The blood nurses won this round, even if it does pain me to say it.

I made my way back to the cafe, cotton bud attached to my arm and a smile on my face. It’s always nice to get the blood test out of the way for another cycle. This time there isn’t another cycle… even better! Julie left us at around 17:00. We thought it couldn’t be much longer before we were seen. Mum and I decided to move to the waiting area as they often call your name before it appears on the screen when you have face to face appointments. They finally called us at about 17:45. I’d figured this trick out before, though. They call you into the consultation room to take your weight and blood pressure, then leave you there to wait longer. Tricksie, but not tricksie enough. There’s no swindling me, dear Christie hospital. When the nurse asked me if I wanted a cup of tea, I knew we were in it for the long haul. Good job I like waiting; I’m preparing for purgatory after all.

We actually didn’t have to wait very long for the oncologist to see us. Probably another 20 minutes or so. That’s the easy mode of waiting – I wait 20 minutes for things all the time. Sometimes I wait even longer. Although we didn’t learn anything new in the meeting, it was good to get some face to face time with the oncologist. You don’t get time with them very often, so it is nice to ask some questions and discuss how things are going with them. He reassured me that my case is almost definitely going to be passed over to the surgeons, but then they will have to make a decision as to whether the whole tumour can be removed (best-case scenario), or if Nano-knife will need to be used to attempt to remove the tumour instead (second best-case scenario which means that the tumour is still too close to a major artery to remove in surgery). Nano-knife is a procedure where they use two electrically charged needles to shock the tumour, hopefully killing the cells. I didn’t actually realise that nano-knife was INSTEAD of surgery – I thought it was a means of getting to surgery by killing the tumour cells near the artery. A quick Google search tells you that it can be used for either method, but that there are few recorded cases of it being used as a pre-curser for surgery. Fantastic – another opportunity to be an outlier. Bring it on.

The next steps are: do the final session of chemotherapy on Saturday, attend the CT scan on Tuesday, and then get the results of the scan two weeks later. Apparently, I’ll have a few weeks of recovery no matter what is decided as the appropriate next step. I can’t wait to be 3, 4, 5 weeks away from chemotherapy. I’m really intrigued to see how much better I feel the further away from a treatment day I get, and if I’ll see a big difference in things like my energy levels. It also feels like I can confidently make plans for the first time in a while, even if only for a month or so. It’s good to feel like I have achieved something, and Julie’s thoughtful card is what put that feeling in my brain. I’ve made it to the end of chemotherapy, and it’s gone pretty well overall.

Life is good right now. Let’s hope the scan results get me one step closer to being one of the few who actually survive this bastard cancer. And if I don’t and I end up in purgatory, I’ll be well-read in the art of waiting. Even whilst everyone around me has their name called out. Give me a coffee and an orange and I can wait forever. I wasn’t even signed in, anyway; I do this for fun.

29 and Counting: A Birthday Post

Last Night’s Celebrations

Today is my 29th birthday. It’s been a tumultuous year, to say the least. Thankfully, I finally have some good news to cling to after Thursday, which has given me so much to celebrate today.

I’ve been very busy since getting the results on Thursday. We went walking with Lucy and a few friends yesterday afternoon. Then many more of my friends came over last night to celebrate the news with me and to surprise me with TWO entire birthday cakes! I also received some lovely presents, including an oil burner and a new baking book. As I write, the oil burner is on right now, and it smells wonderful. It is a ‘Focus’ one – Andy and Ruth told me they got it so I could put it on whilst I write.

Walking Lucy Puppy

Today, I’m going to be celebrating with my family and some friends. Dan and Em travelled up from London to hand-deliver some presents to me – one of which is this amazing apron! They only stayed for an hour or so; I feel very touched indeed but also feel bad that they are spending most of their day on a train.

‘Dan Godley Baking Queen’

It feels bitter-sweet receiving such good news this week and celebrating my birthday today; seeing so many videos and reading the news reports from Ukraine makes me feel somewhat guilty for doing so. There is so much suffering going on right now that I cannot help but think of it often. We find ourselves back in the unfortunate position of addressing the bigger iniquities of our species: our lust for power, propensity for war and conflict and a lack of empathy for others. I saw a video of children being arrested in Russia for laying flowers at the Ukrainian embassy, something which, if true, is truly horrific. Unfortunately, I don’t entirely trust our media to portray everything accurately or honestly either. This video of a child in a cage crying whilst her father tries to comfort her is incredibly disturbing, though, and did not seem fabricated.

I watched a documentary on the BBC about the conflict a few days ago, which was throwing around all sorts of theories about Putin. For example, he has become very paranoid during lockdown and was spending a lot of time alone, so he has now invaded Ukraine. How they would know such things is beyond me – but they had thrown the documentary together very quickly and were trying to influence the audience heavily towards what seemed to be baseless claims. All I know for sure is that there are millions of people now at risk of needlessly dying, that children will be caught in that number and that Europe seems increasingly complicit in the shelling and destruction of many major cities in Ukraine. There is also an entire country of individuals in Russia now being damned to suffer against a broken economy, a corrupt regime with a taste for war and a lack of any democratic process to hold those waging the war accountable. It feels like it will get a lot worse before it gets better again.

This post is not about the war in Ukraine, and I have written far more on it than I planned to. In reality, there is always a war being waged somewhere, a population of people suffering against some form of evil. It does not mean that we should not try and enjoy our lives. To an extent, enjoying our lives and exercising our freedoms is a stance against what is going on in Russia right now. No matter how much our government lies and frustrates us, we can confidently criticise it without fearing indefinite jail time and/or death. We shouldn’t have to overtly state that this is a positive of a government in the modern world; it should be the standard. Unfortunately, it is not, for far more governments than just the Russian government.

I have my own fight to consider, though, and I have reason to believe that I may be winning it, for now. The tumour has reduced by around a third. It still feels strange even 2 days after receiving the news. If I could go back to myself sitting in the hospital bed, having just been told I had pancreatic cancer, and tell myself that this would be the outcome at the first scan, I wouldn’t have believed it. All I wanted was to hear that the tumour had stabilised, and I would have been happy. I had set myself up to be happy with any news that wasn’t the tumour spreading. Sitting in the room on Thursday, waiting for the specialist to come in, I told myself that I didn’t need the tumour to be smaller; I just needed things to be stable. As she read the report out and started reeling off the positive details, I was pulling out the phrases and trying to figure out if I understood it properly. “…reduced in size from 3.2 to 2.1…,” “…CA19 marker down at 200…,” “…will be recommending that your case is taken to the MDT to be discussed…” In my head, if this was the result, the nurse would have got out the ‘Congratulations’ banner, and the whole staff would run in clapping and whooping. Instead, it was read off the medical report like it was just another meeting. I think my expectations may have been off.

Even if I was writing a novel, I wouldn’t have written that I’d get these results straight away; it seemed too unlikely. Luckily, I have spoken to a few survivors whose diagnosis was similar to mine and who are now on the other side of The Whipple procedure, so I was aware it was possible. For every “some people survive, why wouldn’t you?”, I couldn’t help but think, “why would I?” That attitude has faded slightly more with this news.

What has also faded is the attitude that I don’t have something to celebrate on my birthday. I thought that it would be an intimidating day – celebrating surviving another year of life when I am unsure how many more of these celebrations I will have. It doesn’t feel like that after having some positive news. There is also the fact that your birthday means very little in reality and that we are all getting older every second that passes. It is more ritualistic than anything else having a day to celebrate it. I do have confidence that I will be celebrating many more birthdays, though, which is something I would not have said even a month ago. I certainly wouldn’t have said that in November last year, so I’m making progress.

It is strange fantasising about where I will be a year today too. I play this game with myself a lot – thinking about where I will be in 1, 2, 5 years from now. The game is even more interesting with the cancer in the picture. Will I be cancer-free? Will the war in Ukraine be over? Will Lucy have grown to be a normal-sized dog? The questions vary in their gravitas; the last one probably isn’t that important in the grand scheme of things, but she is so cute with her little legs and long sausage body.

The question ‘Will I be cancer free?’ reminds me of a catch-phrase my best friend Luke used to have, where he would say ‘x free since ’93’ because it rhymed. For example, before November 2020, I would have said ‘Cancer free since ’93’. I can’t say that anymore. What a shame! If I get rid of the cancer in 2023, I can still say ‘Cancer free since ’23’. Maybe that should be the aim, and I should refuse any attempts at the surgery this year. I wonder if the doctor would support it; he’d probably recommend I get a therapist and think hard about my priorities in life. He would be right.

For the rest of today, my plan is to chill out with my family and open some presents. Anna and I were meant to be going to the Lake District next weekend, but we have had to cancel because of chemotherapy being moved to next Saturday. Although it would have been nice to go away, I am looking forward to an extra week off the chemotherapy. My mouth is feeling much better already from the ulcers. I’ve already been running this morning with Finch. It was my first run with my new Garmin running watch, so I was playing around with the functions and seeing what new types of data it captures. I got giddy as I finished the run, and it started to cycle through various chart summaries of my performance. It is a bit sad, really. I did get a chemotherapy 5K PB, though… a little birthday present to myself.

Lucy, Anna and I During the Celebrations Last Night

Scan Results (World Book Day)

Pre-Scan

I’m organising this blog post in a bit of a different format. It is currently 10:15am in the morning. I am setting off for the hospital at 11:15. My standard bloods appointment is at 12:05, then my appointment with the oncology team is at 13:00, where I will speak through the scan results. I thought I’d write a little bit now before I set off to capture how I am feeling and share a few thoughts, then I will write about the results later on.

Today is World Book Day. For some reason, I find myself identifying parallels in the universe a lot these days. In my ‘The 1%‘ blog post, I drew a parallel between the 1% movement and the statistic that 1% of people diagnosed with pancreatic cancer survive past the 10-year mark. Today, the parallel I have found is that it is World Book Day, and I will be receiving my first progress scan results today; I will then write about it in the blog and hope to eventually turn it into a novel. The novel may not be the exact story of what has happened to me, but it will certainly draw on my experiences. Today is a massive part of that experience.

At this point, it is worth highlighting my brother’s costume for World Book Day. He is a science teacher, and his department’s theme was Alice in Wonderland. Obviously, he dressed up as Alice, as you can see in the terrifying yet hilarious photo below. His face is a bit messed up as he fell off his bike at the weekend and had to go to A&E.

Greg’s World Book Day Costume – Greg in Wonderland

With regards to today’s scan, I’m feeling calm. I’ve had a lot of messages over the last 24 hours from people wishing me well, which has been really lovely. Thank you to everyone who has reached out! I’m in full stoic mode today, feeling very aware that the news is the news, and I can’t do anything to change it. It may just be easy to say that now as I am sat philosophizing about the situation, and perhaps it’ll be more difficult to put it into practice when I am sitting and listening to the news. It is definitely hard to put it into practice when I am waiting for my name to show up on the screen in the waiting room. This was the part of the process that broke me the first time I attended one of these meetings at The Christie. There had been too much waiting, it was an hour past my planned meeting time, and I just couldn’t keep off the weight of the situation. I had a bit of a breakdown in the office once we were in there and could feel the pressure building up in my head. That isn’t to knock The Christie’ they are running a very complex operation and balancing so many vulnerable people in one building. But the tardy appointments add another layer of stress to the process. Hopefully, now that I am aware that this is a risk, I’ll be able to manage it better today.


Post-Scan

The headline is: the tumour has reduced in size! From 3.2cm to 2.1! The specialist also said that the tissue around the artery is looking healthy. We now have to wait for my case to be discussed at the next MDT meeting on Wednesday. There are surgeons in this meeting who will review it, decide whether I am ready for surgery, then come up with a plan for doing it (if that is the decision). I will then find out what has been decided on Thursday next week via a phone appointment. My tumour markers are also at a low of 264 apparently, which sounds a lot better than the 16,000 figure that they started at.

As the nurse told us, Anna had to clarify with her. “So this is really good news, right?” The nurse responded, “yes, it’s really good news,” before Anna burst into tears. We are both still in disbelief, really. I’m not even sure the news has sunk in for me. I’m so used to having a high wall up and trying to keep myself level-headed that I feel like I cannot quite enjoy such a positive outcome yet. Of course, I still don’t know for sure that I am surgery-ready yet, but we have all of the best signs there that I will be approved. Even if I wasn’t, the tumour has reduced dramatically, and the tissue around the artery is well on its way to being healthy, which will allow me to do surgery.

The next piece of good news is that they have delayed my chemotherapy treatment by a week to let my mouth settle down from the ulcers (and allow me to enjoy my birthday)! After I complained profusely and allowed her to look in my mouth with a light, she agreed that it would be good to give it some time to settle down. I think she actually felt sorry for me and wanted to provide me with some relief on my birthday weekend, which is fine with me. I’ll play the victim if it gets me what I want… like a petulant child.

There are so many people that I wanted to message directly. It is just too challenging to keep up with everyone I should message at the minute, though. Although it is amazing news, I feel like I need to keep myself grounded and focused. Even with the best-case scenario, there is still a major operation to go, a big recovery, and likely more chemotherapy. Then, assuming that all happens and there are no issues, there are the regular checks and the fear of the cancer returning. It is far from over, but it is terrific news that I will hold tightly to my chest! Thank you to everyone who reads the blog for all the support so far. To anyone dealing with cancer, I hope this brings you some hope in your fight. The lows really are awful, but I can now confirm that the highs are really incredible too!

Dan Ran 40 for Pan Can

Lucy and Me in Bed on a Bad Chemotherapy Day

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

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

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

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

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

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

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

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

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

An Unexpected Hiatus

As an avid reader of this blog (which I am sure you are), you have probably noticed that I took a hiatus last week. It happened unexpectedly for me, too, so don’t feel cheated. I say ‘unexpectedly’ because I did not plan on having a few days off writing. Quite the opposite, actually. There were 2 posts that I had been working on, and I really liked both ideas. In fact, one of these posts is almost finished. Unfortunately, it panned out to be a bad cycle and a bad week for the world generally.

The ulcers were back in full force. They were actually back in a way that they hadn’t been before, and for an unprecedented amount of time. It all began around Tuesday, but they did not get particularly awful until around Thursday. I have had yellow sores running along the underside of my tongue like a train track. When Anna shined a light in my mouth, we also noticed sores on the top of my mouth. Ulcers were dotted all the way to the back of my tongue like landmines, and nothing seemed to persuade them to leave. I have been in a routine of washing my mouth out with saltwater, followed by the hospital issued Difflam mouthwash and finally, Anna would dry the ulcers with toilet paper and apply Iglu to them. Iglu is a gel that forms a protective layer over the ulcers – much more effective than the Bonjela I had been using. “Bonjela just slides straight off the ulcers. I wouldn’t waste your money,” said the pharmacist when I went to beg her for a miracle remedy on Friday morning. I was always suspicious of Bonjela. Every time I applied it, my finger seemed to leave my mouth with most of the gel still on it, and the little bit that left I would witness disappear as quickly as I applied it. I assumed that the split second it made contact with the ulcer was enough, but apparently not. You will no longer be receiving my custom, Bonjela. Buck your ideas up, sucker.

The past week has been tough for a lot of people all over the world. Suddenly, the prospect of war in Europe turned from a tiresome storyline repeated too often in video games to a reality. It was the way that I learnt of the news which bothered me so much. On Thursday, I woke up at 4am with incredible amounts of pain in my abdomen. I reached out for my water bottle and took a sip before digging for some painkillers in my bedside drawer. Once I had taken them, I knew that I would not get back to sleep if I tried right away, so I grabbed my phone. ‘Russia declares war on Ukraine’ read the latest notification as the screen lit up in front of my eyes.

For a few hours, I sat on my phone, looking for more information on the situation and trying to understand how concerning it was. We have learnt since that it is very concerning. That first day I sat reading the news all day, constantly refreshing the BBC news page and reading every new piece of information. This type of behaviour is very uncharacteristic of me. I actually make it my mission in life to avoid the news as much as possible. I do not want to be ignorant of world events, so I leave notifications of a few news outlets on. This means that I see headlines and can dive in where something seems interesting, but it mostly allows me to be aware of things going on without bogging myself down in the details. It is like walking a tightrope of not wanting to be totally ignorant of the world but not making it my obsession to worry about everything. I also try not to buy into the press’s sensationalisation of every bad event, which is what it feels like the news is more about these days. Unfortunately, this particular story was very hard to look away from.

It doesn’t take a clairvoyant to guess how my mood was for the rest of Thursday. The mind is powerful, working both for and against us in so many ways. My mind was solidly against me from then on and for the next few days. How this then impacted me physically was quite shocking, even to me. I really struggled to get out of bed for the rest of the day. I kept trying my normal techniques: find a recipe that excites me, look at the fundraiser for the Run 40 campaign, think about a blog post I wanted to write. Nothing worked. All I wanted to do was sit and worry about the end of the world. I watched videos of people in Ukraine panicking with their families and trying to think how on earth I’d react. I read stories of brave men pledging to resist against any amount of force thrown at them. I use the word ‘brave’ here, which I don’t use lightly. Any time I am told that I am brave for how I am coping with my diagnosis, I feel like an imposter. My situation was forced upon me entirely; these people are showing far more bravery than I could ever hope to muster. The whole thing paralysed me, as I am sure it did many others. I cannot even begin to imagine how it feels for the people of Ukraine or those in Russia who watch as their leader makes casual threats of nuclear war. The Russian public can’t even protest in fear of being arrested, or worse. It is a horrific situation.

Between my obsessive refreshing of the BBC updates page regarding the war, and the ulcers making everything incredibly painful, I just collapsed under the weight of it all. I’ve hardly cooked, I haven’t baked, I’ve been sleeping far more, and getting the energy to do anything has felt difficult. It wasn’t helped by the ulcers, which got so bad I could not allow my tongue to rest in its natural place because it was pushing the ones at the back against my teeth, making them bleed. Then there was the stress of knowing that the big week was finally coming – the first progress scan and results.

I arrived at The Christie hospital this morning at about 8:15 for my scan. The appointment was at 8:30. I made my way to department 11 – a place in the hospital I hadn’t been to before. Exciting. Turns out it is pretty much like the rest of the hospital; a waiting room with a reception for you to sign in, then a corridor off to the functional rooms. I registered with the receptionist and sat down. About 6 others were waiting. BBC News was blaring from the TV talking about war, death, refugees. Even the hospital isn’t safe – I thought they’d make it a haven away from real-world events. Don’t people have enough to deal with here? As I looked around, trying to distract myself from the doom-speak, I noticed that everyone in the room had the same brand plastic bottle they were drinking something from. I felt left out and wondered if they were all from the same contractor services, waiting to do some form of work there. They didn’t look like they were affiliated with each other, though. It puzzled me. One woman also had a small plastic cup of milk. Her hand was quivering as she lifted it to her mouth; I wondered how much lay on this scan for her. Just at that moment, my name was called out by a man in a white coat.

Of course, the bottles contained a solution that we had to drink for the scan. I know that should have been easy to guess, but I have had about 3 of these scans since falling ill and have never had to do this. Inwardly, I felt very stupid even considering that this wasn’t a standard procedure for the scan. Why would a group of clear strangers, all sitting apart and ranging in age from mid-30s to approximately 70 years old, be affiliated with each other just because they are drinking from the same branded sports bottle. What an idiot. The scan went fine, anyway. I didn’t expect anything else. Thursday is the big day when I receive the results. Saturday is then the next chemotherapy cycle, and also my birthday. I can’t say I’m excited for the week ahead, but I’m trying to be.

It is going to be a strange week, that’s for sure. The idea that the best possible news I could receive is confirmation that I will be getting a major operation is, in itself, intimidating. I haven’t fully considered what the worst-case scenario could be. I’m not sure I even know what the worst-case scenario could be. Cancer blindsides you like that – you think you understand something, and then you learn that your understanding was wrong. Even I say that and my oncologist told me that I was the “best informed patient she had ever met” after asking me what I knew about the situation with my tumour in our first meeting. I felt rather flattered. Maybe she says that to all the patients. I hope not.

I’m hoping to kick back into shape this week. Back to the baking, blogging and running. Even a little bit of birthdaying (once the chemotherapy treatment is over). I’ll do a full chemotherapy diaries post and delve into the full details of the last week there. I wanted to write a little bit about why I had been quiet and give an update on the scan today, as many people have messaged me about it! I’m also going to write a proper post about the Run 40 campaign, which is finishing today. I really wanted to get another run it before it was over but I just wasn’t up to it today, unfortunately.

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.