The Last Throes of Treatment

Lucy On Her 1st Birthday

From now on, I think October will always be a weird time for me. It is that period when the days start getting shorter, and all of the enthusiasm of the summer sun is waning. I didn’t use to mind the shorter days; winter was actually my favourite time of year when I was younger. Me and my friends used to hang out together when we were teenagers in the local parks, and it was fun when it was darker. You felt inconspicuous. Nowadays, I realise that we probably looked intimidating, but we mostly stayed out of people’s way. There wasn’t a lot to do in the village we’re from, so standing around in parks felt like a pretty normal pastime.

Unfortunately, October is now known to me as the month where I was in and out of hospitals, trying to get the sudden sickness that had come over me diagnosed. It started out with me reluctantly going to A&E, knowing that it’d take away an entire evening of my precious life. Then it extended to a week of blood appointments and scans. Then a referral to another hospital with a more specialised Hepato-Pancreato-Biliary (HPB) unit. After 3 weeks of this, I’d been told that I had cancer but that it was a very slow-growing and non-aggressive cancer, which felt comforting. Another week passed; the diagnosis was wrong. By the start of November, I was learning the true extent of the issue. Pancreatic Cancer. You never think it’ll happen to you, but here I was. It was happening.

I’d be lying if I said that it does not feel significant to be sat here a year on. I remember attending the hospital throughout October and wondering when it was finally going to be over. I remember the first time I picked up a prescription for a drug called Creon – the enzyme replacement treatment that I am now all too comfortable with. At the time, the specialist told me that it might help to reduce the amount of pain I was experiencing in my abdomen. He told me to take one before and after each meal. I had no idea that I’d end up taking around 20 – 30 of those tablets a day. At the time, I think they believed my pancreatic functioning to be a little low, meaning I only needed a small amount of enzyme replacement therapy. Now, I have no pancreas at all, so all I have is enzyme replacement therapy. I constantly have to battle with the local pharmacies for more of the drug because I use so much of it, and they seem reluctant to stock too much of it. Perhaps the town I live in is full of people suffering from pancreatic issues. Maybe they should start testing the water and sorting out the issue – there isn’t enough Creon in this town for all of us. I hope I get priority as the flagbearer of pancreatic cancer (a title I have definitely assigned to myself and do not deserve based on any reasonable definition of ‘merit’).

It didn’t even occur to me last October that I might end up a diabetic, need major surgery, or have to do 6 months of chemotherapy. I was still assuming that it would be a quick fix – even if that was some sort of minor surgery. You don’t think you’re likely to have cancer when you’ve been running marathons like I had been doing throughout September. You just assume that people with cancer feel different, that their bodies can’t cope with the stress of training for more extreme fitness events. Unfortunately, they can. Bodies are resilient. So are human emotions of denial, especially where that denial can preserve one’s sense of normality. Going to the hospital was a concrete admission that something was wrong. I told myself that it was a food intolerance causing me pain. I told myself that it was minor and that it didn’t require further attention. The few times I did try and get diagnosed, I felt like I was making a mound out of a molehill; I wasn’t taken particularly seriously by any of the medical professionals I saw. That reinforced the feelings of inadequacy – inadequate to be taking away these people’s precious time; they could be seeing someone who really needs the attention, someone with cancer.

So, October drags on, and so does the treatment schedule. I’ve been back at the hospital to do bloods today before starting the mop-up chemotherapy tomorrow. The new treatment schedule is one consisting of 4-week cycles – 3 ‘on’ weeks and 1 ‘off’. On the on weeks I have a 30-minute infusion at the hospital and have to take chemotherapy tablets twice a day. On the ‘off’ weeks I forget about hospitals and get on with my life…until the next cycle starts, of course. The whole cycle repeats 3 times, and then I have to do another scan. Assuming that scan is clear, I’m then a free man! Until the next scan, then the next scan, but you get what I mean…

It means that The Chemotherapy Diaries series is going to have some new life breathed into it. Back by popular demand. I think I’ve probably had some of the biggest compliments on the blog from that series. Maybe the feelings that chemotherapy inspires are the exact point where cynicism meets defeatism, creating the perfect environment for comedy. Time to pick up my sick bucket and pull up my gloves again; the tingling fingers of a chemotherapy patient, tapping away on their phone, writing their blog where they moan about everything and don’t relent over anything. Oh please dear nurse, take more of my blood for I have no need for it. Shakespeare would have invented 500 words in 12 chemotherapy sessions; I barely managed to produce the ones I know. I usually sat with my head between my legs and my headphones on full blast. It was comforting until I got the inevitable tap on the shoulder from the nurse – “Are you sure you’re ok?” They’d say. “I’m fine. I always sit like this,” I’d respond, not moving my head from its brace position, still staring into the eternal void I’d created between my legs. Lovely, endless void, we meet again. That was always during bag number 2 – this time there is only bag number 1, and it’s only 30 minutes.

The cycle does sound much more manageable. It’s going to be interesting to see how much the mop-up chemotherapy affects my energy levels. They’ve been good recently – I’m working full time again, taking Lucy on regular walks and waking up relatively early without feeling devoid of all energy. The blog has been taking a hit now that I am working full-time again, but I’m figuring out how to create space for it in my more normal life. I’m finding myself staring at spreadsheets again instead of fawning over this word or that phrase. It’s been good, actually. I forgot how much personal triumph you can feel from working. When I have an idea about how to sort out a data problem that my team is having and I write the formula, then watch as I execute it and all problems are temporarily resolved in the world, I feel a rush of adrenaline. “This is living,” I think to myself as I take a sip from my coffee. Life is simple sometimes – Microsoft Excel offers refuge in the form of linear problems with linear answers. Dealing with chemotherapy doesn’t feel quite so linear.

Even the sickness I get after eating has been reduced. It is still a problem, but less so. Sometimes I manage to eat a meal without getting any sickness at all, though this is rare. The sickness is much more manageable even when it does happen. It’s more like an annoying voice in the back of my head telling me “you feel a bit bad after eating that sandwich for lunch, don’t you, Dan? Maybe you shouldn’t have put so much cheese on it, you pancreasless weasel.” Come to think of it, I should change my Twitter handle to Pancreasless Weasel. My Twitter account is far too serious currently.

The excitement at finding data solutions is yet another sign that my life is actually returning to normal. It’s crazy – I truly didn’t believe that things would ever get back to this place, or anything like this place. Despite knowing that I have another 5 years of regular scans before I can truly breathe, it feels like space is being created between the cancer and myself in my life. I’m starting to feel like someone who can talk formatively of cancer, not as someone suffering at the hands of it. No matter what happens in the next 5 years, I’ve gotten to a place which I didn’t even dare to dream of a few months ago. In the last 12 weeks alone I’ve come to be at peace with being diabetic, even finding the process quite fun. It is like a game that you are constantly involved in, yet have no choice over your involvement in it. It is similar to life itself in that regard, I guess, but the diabetes game comes with an app that has a nice graph and lots of statistics about how well you’re doing. Life doesn’t come with such an app. Perhaps I’ll try and create one.

Something that does feel somewhat significant is the fact that Lucy turned 1 at the end of September. We got her at around 8 weeks old, so the countdown is on to the 1 year anniversary of us first meeting her. She has enriched our lives so much. You really do see the best of the world when you spend time around a sausage dog. Seeing their impossibly long bodies bounding through the shortest of grass, yet making it look like a fully grown cornfield, is a comedy that you cannot really recreate any other way. I watched an interview with Christian Bale yesterday where he said “The best actors are children and animals because both don’t give a shit what anyone thinks about them,” and it is so true of Lucy. She is unapologetic in her approach to the world. I’ve spent so long feeling every negative and positive emotion under the sun this year. Everything has been intensified by what has been going on with the cancer. With a sort of end in sight, I’m beginning to get more perspective on everything and feel a sense of relief. As I start chemotherapy again tomorrow, I do so with a genuine end in sight. That certainly makes it easier. So does watching Lucy go about her life without any regard for the bigger picture. There is only this impulse or that desire. You can find plenty of lessons in watching a dog go about their day-to-day life of eating, pooing, sleeping, and repeating. Someone should turn that into a t-shirt or something.

A Not-So-Impressed Lucy

It doesn’t make the month of October any easier to deal with, though. I will forever blame this time of year for punishing me as it did last year. I remember an unusual period of hanging around the flat after spending whole days at the hospital, not knowing what the future was going to hold for me, getting increasingly frustrated at the lack of concrete answers, and the growing anxiety that was building. Who knows what I was doing exactly 1 year ago this second. In a way, it is easier now that I understand the extent of the illness and that I have been through so much to try and fight it. Better the devil you know than the devil you don’t. I’m married now, and I’ve got a little not-so-puppy puppy that has just turned 1. Life is good, so let’s hope this next bout of chemotherapy is good too (and generates some juicy content for the blog).

Oh, and my mum has a little puppy sausage dog now too. So that’s got to generate some good pictures for the blog, right? Lucy keeps humping her which is a little disturbing but further proof that dogs really just don’t give a shit. She’s 9 weeks old, Lucy. Tone it down a bit…

Lucy, Meet Lila

Note to Self (The First Meeting With the Surgeons)

The Road to Recovery

Anna and Lucy on a Dorset Beach

Elephants and Tea – Dear Cancer Letter

Elephants and Tea have posted my Dear Cancer story under the title Dear Cancer, Every Cloud Has a Silver Lining. You can find a link to the online post here. The full magazine can be found here. You can purchase physical copies of the magazine on their website which is a great way of supporting their work. It is free to view online.

They do amazing work, providing support for Adolescents and Young Adults (AYA) with cancer. Early on in my cancer journey, I sought out several support groups to help me feel less alone. Although some of them had amazing people in them, no one was under the age of 55. It did sometimes feel isolating, as if I was the only person this young actively seeking support. Finding Elephants and Tea was a huge relief to me, and their online resources really helped me out. I was incredibly happy when they accepted my submission.

In the June edition, you can find many other Dear Cancer letters, from all different kinds of perspectives. I’m still making my way through them but have thoroughly enjoyed the ones I have read. It is also the first time that I’ve seen something I have written in physical print – exciting!

You can follow them on Twitter and other platforms (I assume, I don’t have any others). They will appreciate all of the support, whether it is having a read of their posts, buying a physical copy of the magazine or just engaging with their social media accounts.


The next stage of treatment commences: I have my first appointment at Manchester Royal Infirmary with the team of surgeons. After the disappointment I felt at the final scan results post-chemotherapy, where I went into the meeting thinking I would be getting more information than I did, I’m trying to keep my expectations as low as possible. Maybe my life goal should be to become a blank slate with no hopes, dreams or inhibitions; that would make dealing with cancer much easier. It is tempting to convince myself that this will be the meeting where they will tell me I will be having this procedure on this day and everything is ready to go, but I feel I’m setting myself up to be disappointed by creating those expectations. Perhaps I need to go into the meeting having convinced myself that they are going to tell me absolutely nothing. “It’s an induction meeting,” I’ll repeat to myself over and over again until I truly believe it. That way, no matter what happens, it’ll feel like progress. Unfortunately, I’m not a machine and my stupid emotions won’t allow that to happen.

At this stage, I feel quite sorry for the medical professionals who are dealing with my case. I’m always extremely polite to their faces and truly do appreciate what they do for me, I want to make that clear. After we were told that it may take the surgeons a month to contact me, though, Anna and I left the meeting feeling surprised. An entire month to be contacted? Isn’t that far too long? Why the holdup? Surprise turned to righteous preaching as we spoke to friends and family about the meeting. “He even told us that if they do not contact us within a month, we should contact the surgeon’s secretary! How can they expect them to be so disorganised?” We were riling ourselves up. Righteous preaching turned to minor rage. Then, we realised that hearing nothing from them for a month meant a month of true freedom. No chemotherapy, no hospital appointments, nothing. We decided to do the things we haven’t been able to: go to London, visit Anna’s family in Dorset, enjoy ourselves. I’ve settled into the new life. It almost feels like I don’t have cancer anymore, other than how bad I feel every time I go running. For some reason that is only getting worse. Also the neuropathy. Also the abdominal pain. Ok fine, it doesn’t feel like I don’t have cancer. I’m even using double negatives now; everything is going wrong.

Wednesday evening, as I sat at my friend’s house in north London having dinner, I received an automated message from Manchester Roal Infirmary. ‘You have a new appointment letter. Click here to open it‘ it read. Here we go again – back on the appointment clock. The period of peaceful bliss only lasted about 12 days. Now I’m scorning the medical professionals for contacting me too quickly. I can’t even keep up with what I want from this process; I’d hate to be them on the receiving end of my negative energy (which I keep completely contained between me, my family and my friends, and which only ever lasts a couple of days before I see how unreasonable I was being). It is why I feel sorry for them, but I don’t actually criticise them. I realise that they are probably managing a lot of cases. You need to vent about things to your friends and family, it helps you process information that is difficult to comprehend.

The link that they had text me didn’t work at first. I called home and spoke to my dad to see if I had a physical copy of the letter but there wasn’t one. “Just move on,” I said to myself, trying to seize the day and just let it be. Ten minutes later I tried again; how can I seize the day when I might have a letter telling me that I am going to have my organs pulled apart by someone I have not yet met? This time the link worked and I was in the hospital mailbox. The letter didn’t contain the words ‘we are going to pull apart your organs’, which was a relief. They went for the standard template of time, place, person I would be meeting. A bit boring but understandable. Some may find ‘we’re going to pull apart your organs’ a little too direct.

As I left my friends house, I called my parents to tell them. Once I had hung up I think it all hit me properly. I sat on the train home, holding Lucy, thinking about what might come next. In my head, I bounced between telling myself that it was good and that I need to do this to survive, whatever this was going to be. Then I thought about potentially being under general anesthetic for half a day, about a knife cutting away at my organs, about waking up in a hospital bed and not being able to see anyone that I loved. It should have made the train journey go quickly, but it didn’t. As my mind played mental table-tennis with itself, my eyes evaluated the tube map over and over again, counting the stops before I got home. Lucy the puppy was sat on my lap. She was getting irritated as I wasn’t letting her on the floor. I could see her eyes surveying it for any crumbs that she could lick up. London has been a revelation for her. As you walk her down the street, you have to constantly look out for stray chicken bones and other food that has been carelessly discarded. It is everywhere and she loves it. I didn’t have the patience to deal with her at that time and it was another thing that was stressing me out.

By the time I finally got home, I felt stressed. It took me a few hours but I managed to get out of that headspace. It has come back a bit at times, though. Last night I lay awake in bed for an hour or two. I wasn’t focused on it the whole time, but it regularly seeped back into my mental. It never felt like I was struggling to get to sleep, to be fair. I’d watch something on my phone, listen to a bit of music, read a few articles. Anything to distract myself. Eventually I fell asleep but I don’t remember when. Anna was up at 4:30 this morning for work; I vaguely remember waking up and looking around as she got ready, but not really. Luckily I slept more and I’ve felt energised today.

I’ve spoken before about how quickly humans seem to adapt. We felt it during the Covid lockdowns and I’ve felt it throughout my journey with cancer. For six or seven months, the chemotherapy cycle was everything. None of it was enjoyable, but I made it work. I’d make plans with friends to take my mind of it, joke around with the staff whenever I was attending appointments at the hospital and I’d think of things to write in the blog. It all kept me busy; the time flew by. Post chemotherapy, it took about a week to start winding down from it. Not having these regular appointments anymore started off feeling very scary. As I resumed living a somewhat normal life, I realised that it was a blessing. I can be more independent again – there really is life after chemotherapy!That feeling stuck and it felt like I’d taken a big step towards beating the cancer.

Why did it feel like that, though? I’m barely through the first phase of a complex journey – ever changing and unpredictable. Perhaps it is a defence mechanism. Maybe it isn’t such a bad thing to feel like that; it did help me enjoy life much more while it lasted. Now I have appointments looming over me again and my expectations are building and building. What are they going to say? Will I finally get some concrete answers? Why can’t I just relax and let whatever it is, just happen? Doubt is back and the reassurance of familiarity is gone; no more appointments at The Christie hospital, no more nurses and doctors I recognise. It is all about Manchester Royal Infirmary now. I’ll have to make new connections, learn new processes. Who knows what I’m going to go through in those hospital buildings.

So, this blog post is more for me than anyone else, and it is to remind myself of a tough truth: YOU wanted this, Dan! You wanted them to contact you quickly, you want the surgery (or whatever other procedure you may need to get you to the surgery) and these days you have spent enjoying your life should be the motivation for getting back to normal life, cancer-free and rocking a badass scar. You can tell people that you were attacked by a shark or were involved in a skydiving accident. Or, you can tell people that you went through a major operation, after months of chemotherapy, and likely before months more of chemotherapy. Through the years of abdominal pain, the weeks spent jaundiced in hospital waiting rooms, the shifting diagnosis, the shared tears with your family and loved ones, the sleepless nights and the fear-filled days, you fought on. You did all of that. That should be enough. Sharks and skydiving aren’t necessary. It’s time to sink or swim, and although you hate swimming, you’d rather do it than sink.

‘Sink or Swim’ with Lucy