Ebb and Flow; A Critique of Social Media

I’ve written before about the pros and cons of social media. A while ago, approximately 6 years ago now, I deleted all of my social accounts. I only really used Facebook anyway and never had a Twitter or Instagram account. It was a very liberating process for me. I was never too into these platforms, so I didn’t find it too difficult to split with them. The anxieties mainly came from wondering whether I would have kept the social connections I had alive without it and whether I’d miss the random photos I was tagged in, the events that people plan etc. None of these concerns really materialised in the end. My relationships needed to mean more to me than indifferently scrolling through a newsfeed, getting updates on people’s lives that I mostly knew via tenuous links and convincing myself that the relationship was somehow meaningful. In reality, I decided that I needed to nurture the relationships that mattered and allow the others to drop off. I slowly realised that part of the con of social media is this idea that you constantly need to be involved in everyone’s lives all of the time. You don’t. I seldom speak to some of my best friends, and all that means is that when we do speak, we have a lot to talk about. We don’t need to constantly message or update a status to keep our relationship strong and meaningful.

However, with a desire for this blog to reach as many people as possible, I created a Twitter account. This was new ground for me. I’m not sure why the idea of Twitter appealed to me more than the other platforms; I just knew that I couldn’t be bothered to manage multiple social accounts. It’s hard enough for me to want to log in to one and post regularly, something which I most definitely do not do. Each time I write a blog post, I write a blurb on WordPress, and it is automatically posted on Twitter; I rarely post anything outside of this process. I try and check it each time I open up my laptop, though, to respond to any comments and look at my feed a bit. I follow a few people there, and I like to see how they are doing. Most of them are involved in pancreatic cancer in some capacity.

The draw to particular accounts on Twitter may be for a variety of reasons. Sometimes it is because someone has survived cancer, sometimes it is someone who has been fighting cancer for a while and so have good knowledge to share in their posts, sometimes it is a researcher posting about cancer. I do follow some accounts for other purposes, such as Artfinder, a website where you can buy art from individual artists, which I absolutely love; still, the account is primarily to engage with an audience about cancer, so I mostly keep it to this purpose.

This is where the pros and cons of social media come back into the frame. A year ago, I would have debated all day and night that social media only has cons; I still mostly have this opinion, if I’m honest. There are so many things about social media that I find terrible. One social media platform (of sorts) I have never managed to delete is Youtube. It is a bottomless source of entertainment, mostly mindless. I watch some educational stuff on there, too, such as The B1M channel, which produces fascinating videos on engineering challenges and successes around the globe. 95% of what I watch on there, though, I could stop watching today, and all it would do is grant me back time to commit to more productive hobbies I have such as reading, cooking or, basically, anything else. Sometimes it is valuable to just sit down and watch something mindless. I spend approximately 2 hours on Youtube a day, though, a lot of this time in lieu of watching actual TV. I’d like to bring it down a bit, at least on days when I’m not feeling devoid of energy from the chemotherapy.

A significant con is the commentary that you see on social media, in my humble opinion. There is something about being a faceless individual armed with a keyboard that seems to turn people into psychopaths, incapable of being reasonable and of displaying empathy. Similar to the effect that driving has on people – clutching a steering wheel also manages to turn reasonable people into ego-maniacs who can do no wrong, blaming the external world for every fault. I don’t believe that this many people exist in the world who scan the internet, leaving inflammatory comments on even the most innocent of videos. People will get angry and disagree over anything on the internet, and the level they then sink to belittle and shock each other is unfounded in any other area of human communication or, even, life. If you spend 5 minutes in the comment section of almost any video on Youtube, you are likely to encounter at least one comment or reply that is so horrifically racist, homophobic, hateful or a combination of all of these things, that it genuinely shocks you. They are only a few examples of the specific type of hate to be had on these platforms, too. It comes in all sorts of forms, against virtually anyone who dares post on any of these platforms, never mind just Youtube.

The thing that got me thinking about the pros and cons of social media on Saturday, though, was far more innocent than all of these things. It was a woman in her mid-40s who has been fighting pancreatic cancer since 2020 posting on Twitter. She posted a series of tweets detailing the timeline of her diagnosis. In summary, she was diagnosed in early 2020, was in remission a year later after a successful Whipple procedure, then a few months ago was diagnosed as stage 4, the cancer not only coming back, but spreading out of control. Her prognosis is not good as far as I can tell, and it seems that she has been given about 12 months to live. This is where things get complex for me personally with social media.

I’ve chosen to follow this woman, firstly. I knew her prognosis from her previous tweets, but I did not realise that she was actually in remission at some point and that this was until quite recently. It is heartbreaking to read. I always tell people who say that they can’t imagine how they would cope in my situation that it is impossible to know unless it happens to you. I’m going to be one of those people and say that I can’t imagine how it must feel to be in this person’s shoes, but it has forced me to really think about it over the past few days. Unfortunately, her story can easily become my story, and I may have to face that grim reality. The story highlighted that I may have to face it sooner than I even realised. It sounds like her remission lasted at most a year, if not less. That is a scary thing to consider.

I’ve felt so good recently that I really have managed to mostly shrug off the cancer. C’est La Vie; it’s so easy to say when things are going your way. I’m developing a thick skin developing and I am used to attending the hospital appointments, speaking about the cancer and dealing with the uncomfortable aspects of chemotherapy. I’ve always been someone who takes steps to adapt to whatever environment I’m in, so I think I’ve taken fairly well to the cancer lifestyle so far. The reality sunk in fairly quickly and, if anything, I overreacted to it initially. That is useful for my mindset, though, as once I manage to drag myself back a bit, I recognise that there is actually more potential in the situation than I am giving credit. It’s a nice way round to do things I think, as opposed to being numb to the news upon first hearing it, then spending weeks slowly unwinding the reality and dealing with the emotional burden that would place on me. Besides, I’ve always dealt with things this way, so I’m bound to think it is a better strategy.

The downside of growing accustomed to the situation is that you can be knocked harder by things that mess with your perception of it. There have been many things making life feel normal again. I ran just under 30 miles last week, and the times are getting better. My last chemotherapy cycle had a tough first 4 days, but then it’s been fine. I’ve felt more energised than I have in a long time and I’ve been doing a lot. Walking the dogs, cooking, engaging in getting back to work and looking into any potential financial benefits that the government provide which may help someone in my situation. I feel motivated to do things, it’s refreshing. But that has meant that I’ve felt more ‘normal’ than ever.

Finding out that my platelets were low was the first kink in the armour. I don’t mind missing treatment for another week necessarily; it’s actually a good thing for me, really. More energy, more running, more feeling good. But it is still delaying the inevitable, and it makes me worried that if my platelets can be low in the cycle I consider the best one I’ve had so far, how can I be sure this isn’t now going to be a staple of my treatment? Every 2 weeks I fail the platelets test and have to be held back another week. My treatment drags out longer, I have to wait longer to get that all-important end of chemotherapy scan and I struggle for even longer to understand what the future holds for me. It’s bleak and frustrating, but there’s nothing to be done about it.

Reading these tweets, though, provided a blow that goes far beyond revealing a kink. It reminded me that there is an entirely different part of this journey, far beyond the chemotherapy stage. That journey is stacked with challenges, most of them completely out of my control. People go into remission, only to be brought back down to earth again by another, sometimes worse diagnosis. Whether it comes within 6 months, a year or 3 years later. Sometimes that diagnosis is so devastating that there isn’t anything else to be done. Even thinking about this is speculative in my situation as I haven’t even managed to get the operation yet; I haven’t even had it confirmed that I will get the operation yet. To get to that stage, I may have to enter a completely different treatment stage involving radiotherapy, nano-knife, or both. That is part of the reality which triggered in my mind as I considered her story.

What feels worst about the whole situation is how it strikes hope in me that I don’t end up in that position. It feels amoral given that the whole episode was triggered by someone sharing intricate details of their story. The fact that someone is dealing with that reality, and I am hoping that I never have to join them in it, is itself a bleak reflection of human psychology. Of course, it would be far more strange if I hoped to also be diagnosed as terminal as a form of atonement for feeling this way, especially when this is a person I do not know personally. The way that my mind immediately went to my own situation, though, makes me feel selfish, and like I am lacking the correct type of empathy in the situation. I hope the best for her and her family. She has mentioned having a young daughter and a husband. As I said earlier, it really is impossible for me to imagine what it must feel like, but I’ve spent a long time thinking about it since I read her words. I’m taken aback by her groundedness and humility, both traits which seem to come naturally to many of the people I have met who have been dealt a tough hand by cancer.

So, I feel both grateful and resentful of social media again. On one hand, it allows incredible people to share their stories and give others some perspective on life. This is a huge pro. I’ve met many people through the blog and Twitter, some of which have become good friends in real life too. But the cons are that the algorithm starts to know you, and starts to push things your way that it knows are more likely to gain your interest. For me, because most of what I share, like and engage with is about cancer, this is the key focus of my newsfeed. It provides a rich mix of both positive and negative perspectives on cancer, and some days I go on there and find plenty to smile about, whereas other days it can be a harbinger of the grim realities of cancer. That helps keep me grounded and humble too, though.

It reassures me that I am making the right decision by only signing up to Twitter with the blog, and shunning Facebook et al. The whole metaverse thing scares me anyway. I’m pretty sure Mark Zuckerberg is an alien sent to earth to examine our species and send the details back to whatever super-race he comes from, so they can learn how to better indoctrinate us. I’m suspicious of him and Elon Musk. For some reason, I’m less suspicious of Bill Gates. Maybe he just invests more in his PR budget, and I’m getting swept into the brand. He seems genuine in his want to contribute to the betterment of society; Mark Zuckerberg seems to want to contribute to the betterment of himself regardless of what effect it has on society. Every time I see an article stating that Facebook’s usership is dropping, I feel giddy and I chuckle to myself. Hopefully, Twitter will appreciate my dedication to them alone and give me a little blue tick, implying the blog is much bigger than it is. Maybe then I’ll be invited into the inner-circle of the elite and find out more about this super-race they’re working for. But maybe that would be on terms that I must never be cured of cancer to keep my role in the group relevant…hmm, is that a price worth paying? At least I’m not thinking about those Tweets anymore…

Betrayed by My Own Blood

The Chemotherapy Diaries

Lucy and I Enjoying Our Sleep

I’ve spent the last week of this cycle dodging covid. Someone somewhere seems to have struck a deal with the disease and it has been hot on my tail ever since. The most hurtful detail is that the people hired to carry out the job include my own fiancee, one of my best friends and members of my own family. I’m still winning so far… I would estimate that I have done 10 lateral flow tests and a single PCR this week, and all have come back negative. It’s been close, though.

The first attempt on my life came on Tuesday. Anna and I have been feeling a bit under the weather, both of us waking up with dry throats and feeling more tired than usual. None of the symptoms were too bad, but Anna woke up feeling slightly worse that day so wanted to make sure it wasn’t covid. This was all going on upstairs, unbeknown to my mum and me who were downstairs watching trash tv (Come Dine With Me – the only trash TV worth watching), blissfully ignorant of the situation unfolding upstairs.

“Daaaaaan,” I heard from upstairs, there was obvious concern in the tone. “I’ve just tested positive. It’s only a really faint line but there’s definitely one there.” Mum and I ran into the hallway to find Anna standing at the top of the stairs, worry in her eyes. She showed us the test. There was a faint impression of a line. She did another test, which confusingly came back negative. No sign of a line whatsoever. We thought we’d take a final punt, a decider test. It came back negative again… not a great reflection on the lateral flow tests that everyone is relying on (which we are going to be charged extortionate amounts of money for in England from April 1st). We agreed to keep our distance and sleep in different beds until we could get a PCR to provide a more reliable result, which we got on Wednesday. It came back negative for both of us.

The next hired gun came in the form of my friend Drew. Well, his girlfriend Em was delivering the bullet, but I’m sure he was getting a cut. Tuesday was his 29th birthday, and we had agreed to hang out that night so I could give him his present and the sponge cake that I had baked for him. Pure unadulterated love went into the baking of that cake, and he still tried to take me down with covid. You can’t trust anyone these days. He called me at about 17:00 informing me that Em had just tested positive. I told him about Anna, as this was pre PCR test. Seeing as both of us felt equally at risk of being days away from testing positive, we decided to meet and have a distanced cup of tea. I drove over to his place and stood in the kitchen for an hour, catching up with him and his parents and eating a slice of the cake. It was delicious, if I may say so.

Drew’s Birthday Cake

The last attempt came from my own blood. My mum and I went to Nottingham to drop off some stuff for my brother, Alfie. We took puppy Lucy along for the ride. Once there, we decided to take Lucy on a walk around the local area, Beeston. Beeston is where my dad grew up and all of his siblings still live locally. Alfie is doing his PhD at The University of Nottingham, so he has lived there for a while, eventually settling very near to where my dad grew up, and where his siblings mainly still live. Whilst on our walk, we were going past my aunty Jane’s house. We decided to try our luck and knock on the door to see if Jane and her husband, Roy, were in. At first, we thought they weren’t as no one seemed to be responding to our knocks. We then noticed Jane’s figure peering out of the window, gesticulating at us. She then came to the door and informed us that Roy had just tested positive for covid. “Oh, what a coincidence,” I thought to myself, knowing full well that they were part of this ploy to infect me with covid. We stood talking to her for a while outside the door before Roy came outside and joined us. I’m not scared of no covid; that’s what I was showing them. It’s a dog eat dog world, you can’t cower away from these situations.

My immune system seems to have proven too strong for these weasels and I’m still testing negative at the time of writing. I did hit a roadblock today, though. It wasn’t covid who had the last laugh, but my blood. My own blood betraying me, and I’m not talking metaphorically about my family this time. My actual blood, in my actual veins.

I had my blood test scheduled for today at 11:05. As always, I arrived at The Christie 5 minutes early to ensure that I get through the covid questions at the main entrance, and can check into the relevant department in time for my appointment. Punctuality is my middle name, although my actual middle name is James, which is far less interesting. All was going well. I sat down in the waiting area, armed with my novel. These days I know the drill, and I know that these blood appointments never happen when they are scheduled to. Me and my book had a score to settle, as I’ve been ignoring reading lately. The book was feeling lonely, and I was actually excited to spend some time with it. Four minutes into waiting, at approximately 11:09, my name flashes up on the screen. I’ve barely read 2 pages. How things continue to go so well for me, in such a strange way, I don’t know. I reluctantly closed the book and stood up. “What else can go so well for me this week?” I thought to myself as I made my way across the hospital floor and into the bloods office, begrudging their lack of lateness for once.

The nurse who did my test was sneaky. She immediately started chatting to me about whether I had plans for the weekend. I told her that I have treatment the next day so my plans were pretty limited. Just as she was telling me about how she was planning a quiet weekend, she said “sharp scratch” mid-sentence, at the exact time that the needle pierced my skin. I almost jumped out of the seat. It was fantastic. I didn’t have time to do my normal routine of dramatically looking away and saying something pathetic like “oh I don’t like to watch!”. 30 seconds later, I was putting my jacket back on and thanking her. It all just happened so quickly – the waiting time, the extraction and now I was taking my leave. I felt like I’d been given back an hour of my life, on the same weekend as the clocks go forward in the UK, marking the start of British Summer Time. Everything was coming up roses. I had gained an hour back on the weekend where we frustratingly lose an hour in Britain. Covid was failing at hunting me down and now I was leaving the hospital early. Perfect.

I decided to try my luck and track down a nurse to ask whether my oncology team had managed to write a report on my health. I’ve previously mentioned some difficulties with returning to work. Essentially, my employer would not accept a plan I put together for me returning to work without Occupational Health (OH) getting involved first. OH did a phone interview with me where they asked me some fairly basic questions about my condition and the status of my treatment. From a purely medical point of view, the situation looks quite bleak. I’m on chemotherapy that is considered extremely toxic, with a cancer that has an extremely high mortality rate and I am currently classed as inoperable. The report they produced essentially warned any employer to run as far away from me as they can. At one point, the report actually states that I may need to be considered for ill-health retirement… What on earth would the point of that be? I’ve been paying into a pension fund for 5 years max, the first 3 of them with serious reluctance. The only reason I paid into it at that time was to keep my dad happy, who is pension-mad and manages to force them into any conversation about anything. Seriously, try it with him. Talk to him about ANYTHING, and I guarantee within 7 minutes of engaging he’ll be telling you about how important pensions are.

Anyway, to counter this OH report, I agreed with my line manager that I would get a written report from my oncology team. This report would support all of the things I suggested in my return to work plan. Not an unreasonable ask. Getting my oncology team’s time to create this report is difficult, though. Now, I’m not complaining per se, these people are doing incredible work to save people’s lives, including my own. The nurse who told me that they would do this, however, made it sound like an easy task. 2 emails, 3 voicemails to the specialist’s secretary and 3 weeks no luck in getting any contact would disagree.

I stumbled around the oncology department’s corridors looking intentionally lost. A nurse spotted me and came over to ask if I was Ok. Boom, the plan was working. “I’m looking for a member of my specialist’s team. I haven’t been able to work for half a year and want to return to work, but need a report from the oncology team to help my argument that I am healthy enough to return,” she then cut me off. “This is the breast cancer unit. I imagine you’re in the wrong place,” she smirked; I already liked her. After I explained that I have pancreatic cancer and gave her my specialist’s name, she said that his team were in today. She offered to track them down and speak to them and asked me to go back and wait in the waiting room. 5 minutes later she emerged again, recommending that I contact the secretary again, but giving me the details of the 2 head nurses in case I still didn’t get a response. A bit frustrating, but it’s progress. I counted it as a win and left the hospital with my head held high. Things were doing well, until about 17:00.

I was back home when I got a phone call from ‘No Caller ID’. Nothing ever good usually comes from these calls. What you quickly learn if you are being treated at The Christie is that these calls are almost always from the hospital. The other 20% of the time, however, they are from Carphone Warehouse and they’re trying to convince you that they can better your current phone deal. Luckily, this was the former. I honestly would choose a cold call from The Christie, the contents of which could be quite literally anything regarding my cancer, to having to speak to the random call centre operative from Carphone Warehouse. I’m 99% sure it is a scam anyway.

“Hi is that Daniel?” Not a great start. Who doesn’t know that I am, indeed, Daniel? My ego was already bruised. “Yes, speaking,” I heard someone say this on the tube once and have imitated them ever since. It feels so cool. “It’s one of the nurses at The Christie. Unfortunately, your platelets are too low to go ahead with treatment tomorrow. The bottom limit is 75 and yours are 72. We’re going to have to delay treatment by another week.” Well, that’s annoying. Anna and I had planned to go to Dorset next weekend, then I was going to spend a few days the following week in London before my next treatment. Chemotherapy is king, though, and I know I’m lucky to be getting the treatment I am, so I’m trying not to dwell on the minute details of how my plans need to shift slightly to make way for my potentially life-saving treatment. I can be a little frustrated though, right?

It is strange as after a tough few days initially, this has been the best cycle I’ve experienced by a long way. I’ve had very few side effects, I’ve been running a lot and doing some good times, and I’ve barely felt ill at all. It’s almost tempting to say I have managed to forget I have cancer at times, apart from the constant quips I manage to force into most conversations about having cancer. “Dan, can I watch this programme that I’ve been looking forward to for weeks?” an innocent bystander in my house may ask me. “I’VE ALREADY GOT CANCER AND NOW I CAN’T EVEN WATCH COME DINE WITH ME FOR NINE HOURS A DAY,” I respond, tears streaming down my face. I may as well milk it seeing as it is happening to me whether I do or not.

More seriously, though, I have been cooking and baking a lot again this week. One of the major benefits I’ve found of having cancer has been that I can go about doing things I enjoy, like cooking, running and baking, and people look at me with admiration for doing them. “It’s amazing what you’re managing to do considering what you’re going through,” people say. I have to feign some sort of achievement as I respond saying that I’m only human. The honest truth is that I love doing all of those things. I’d rather be doing them than sitting around feeling miserable. I also have a constant sous chef now as my mum is retired and has a vested interest in my cooking endeavours – she gets to indulge in the final products (unless they have chocolate in, as she gave this up for lent; why on earth someone would do this to themselves is a mystery to me). This allows me to summon my inner Gordan Ramsey. “IT’S FUCKING RAW,” I shout at her as she hands me the chopped carrots. It’s fun for both of us, honest.

Whilst discussing my mum, I have a funny little story from this week. We were out walking the dogs together on Wednesday. The sun was out and it was a clear day, so she decided to take her binoculars to indulge in a spot of bird watching (she isn’t eating chocolate so what else is there to indulge in?). At one point, she was looking through the binoculars whilst holding a bag of dog excrement. I’m not sure if she had forgotten it was in her hand or just didn’t care, but it was hanging right next to her face. I tried to get a picture, but she had just lowered the binoculars by the time I had my camera out. I was do disappointed to not have captured the key moment, but I got pretty close.

A Level of Commitment to Birdwatching That is Unparalleled

Anyway, back to my low platelets… with this being such a good cycle, I do find it strange that it is also the one where my platelets have fallen by so much. The nurse told me it means that my body is still working through the chemotherapy drugs and that it may be doing so at a slower rate because of the accumulation of drugs in my system. The result of the platelets dropping is that my blood doesn’t clot well. It helps to explain why when I removed the cotton bud after my blood test yesterday, it was covered in blood, and why it has left the below mark ever since. Gross.

Low Platelet Bruises Don’t Mess Around

So, although chemotherapy takes the overall victory this round, I do get another week of feeling good. Better just crack on and enjoy it, even if I won’t be able to go to the beautiful Dorset coast for a little bit longer. Lucy and I have been on a few road trips recently. The below picture was taken as we went to see my best friend Luke in Huddersfield. She really is a little heartbreaker.

Lucy Raring to Go to Huddersfield

I hope everyone has a lovely weekend. Here is a vibey song that reminds me of dancing in the sun at Glastonbury in 2019, before I had ever heard of Covid and when I would have bet every penny I owned that I wouldn’t be fighting cancer before the age of 30!

Days Away

The Chemotherapy Diaries

It’s been years with the hope kept close to my chest
That what I’ll get will be better than what I have
So I’ll stay inside and try to sleep my days away

Days Away – Pentimento

Picture from my 29th Birthday Gathering

It’s been a strange cycle so far. With the last one being 3 weeks long instead of 2, I got a taste of normality. The extra week did me a world of a good and it certainly helped my mouth settle down after ulcer-gate. I had actually forgotten what it was like to have a relatively normal amount of energy, but had not realised that I had forgotten, if that makes sense. The months on chemotherapy shifts what the standard is in your mind of what is ‘normal’. It is hard for me to truly remember what my energy levels were like before I started treatment now, but I also had another month-worth of time where I was very ill before starting treatment. This was when I was in and out of the hospital, trying to establish what was wrong with me. It means that I haven’t felt at full strength for over 5 months now. That third week I was given off chemotherapy is probably the best I have felt since before I even fell ill. I got quite caught up in it. My runs were faster, I was up earlier each day and life wasn’t fatiguing me anywhere near as much. It was easier to go to restaurants, laugh with friends and enjoy myself. I was also really happy with the few blog posts I did that week, and wish I had spent time writing more. The whole experience has made me yearn for a return to a similar state of normality. Perhaps that helps explain the last week I have had with cycle 8.

There isn’t a lot to complain about, per se. Physically, in terms of symptoms, it hasn’t been a particularly bad cycle. My nurse during treatment warned me about cycle 8. “A lot of people find this one the hardest. The accumulation of drugs and mental fatigue can take its toll. Let us know if you need a break. Your oncology team can give you a month off if you’re feeling run down by it all.” She had a lovely Geordie accent; I could have sat listening to her speak all day. She was also extremely complimentary about my baking and kept coming over to chat to me about restaurants that she recommends that were nearby in Manchester. It always makes the session go quicker when you have a friendly nurse who likes to chat – although, almost all of them are like this at The Christie. By the time I left the hospital, she had already eaten 3 slices of the victoria sponge cake. I was impressed she was so skinny – it must be those laps around the chemotherapy ward, turning off all the alarms on the machines and chatting to the patients.

The problems with this cycle have been more subtle for me. I’ve felt extremely disconnected, unmotivated and absent. For the first 4 days of the cycle, I really didn’t know what was going on, what I had done, when I had fallen asleep and when I had just been sitting there doing nothing. The world seemed to be happening in spite of me, as opposed to me participating in anything that was going on. When I finally got myself motivated to go running on Thursday, it didn’t feel like my brain was controlling my feet. There was a disconnect between the 2. I felt myself running along but didn’t feel like I had any autonomy over the situation. My body knew I was running and was doing it, but my brain wasn’t interested enough to be involved. It is this apathy that is hitting other areas of my life.

It is a strange phenomenon really. I can’t quite sum it up in a way that even makes sense to me. The lyrics quoted at the start of the blog post stand out at the minute because it feels that they describe the situation well. On Wednesday, I was trying to reflect back on the past few days but I genuinely couldn’t recall what I had done. I barely knew how often I had been awake or asleep. Everything had blurred into one elongated memory of me just sitting around the house, occasionally cooking, occasionally walking. My mum and I went and visited friends together on Tuesday which was really nice. I even drove there and back as mum doesn’t like the motorway, something which I am not usually able to do that soon after treatment because my fingers cramp up badly. It only lasts about 5 days, but I try and avoid driving during this time in case it happens and I suddenly can’t grip the wheel. This is what I mean about the cycle not really being as bad in terms of physical symptoms, though. My hands only cramped for a day or 2 this time. All of the shortcomings of the cycle feel relatively indescribable and intangible. After having such a good extra week in the last cycle, I now feel like I am holding onto hope that I will be able to feel like that permanently, but am condemned to continue with the hard miles for now; sleeping away the time if necessary, just trying to get through it.

There is nothing worse in life than wishing time away, though, even if I am on chemotherapy. I’ve managed to make the most of the past 4 months and I shouldn’t be stopping that attitude now. The amount I am baking has settled down, but I am cooking a lot. My mum and I just started getting an organic veg box delivered to our house from a local company. It is quite ridiculous that I’ve never had to wash dirt off vegetables before eating them in my entire life, considering vegetables are grown in the ground. The modern world is so disconnected from the reality of food. Whilst watching Come Dine With Me earlier in the week (a TV show that I am watching far too much of these days), a bunch of guests criticised their host for bringing out the different cuts of steak and explaining to them about their relative qualities. The host of the dinner party was a butcher, so he had a keen interest in this type of thing. Considering all of the guests expressed excitement at seeing steak on the menu, I was surprised that 3 of 4 of them then started to tell him that he had done something wrong by bringing out the different cuts of meat whilst they’re having a dinner party. What do these people think they are eating? This man is explaining to you why different types of steaks taste differently before offering to cut you off a fresh piece of it and cook it to your liking – how is this not your ideal situation if you claim to love steak?! One of them said that they don’t like to see the meat raw unless it is in a packet. It is absolutely baffalling. Well, now I am getting in touch with the origins of my vegetables; I am scrubbing them clean like they are my own offspring, then cooking them with love, which is an unusual place to take this considering what I just said about my offspring.

The vegetable box also presents culinary challenges. So far in my culinary adventures, I have grown accustom to finding a recipe, getting the ingredients from the shop and then making said recipe. It is a pretty straightforward process and I haven’t seen anything wrong with it up to now (other than wasting ingredients more than I would like as I only need them for a single type of recipe). The veg box presents weird and wonderful vegetables that I wouldn’t usually use, however, such as swedes, as well as not giving you all of the exact ingredients you would need to make a particular recipe. That means either going rogue and trying to make something not from a recipe (gasp! gawk!), or going and buying more vegetables from the shop, which feels like you’ve failed at being a good veg box samaritan. Its my first taste of the Masterchef challenge, another TV show where the contestants are offered a large range of ingredients to choose from, then given a brief to cook to – ‘A journey through your childhood’, for example. My brief to myself is simply ‘use things from the veg box and try to make an edible meal’. It isn’t quite as ambitious. Whereas those contestants are incredibly talented chefs who make amazingly innovative meals up on the spot, I make honey roasted swede and carrot. I wanted to see if I can taste the difference between the organic veg and what I’d usually get from the shop, so kept it quite simple. Not too inspiring. The veg was really good, though.

The one thing I have been baking, though, is this Jammy Blackberry and Almond Crumble Cake. I cannot stress enough how good it is. It is SO DAMN NICE. I found it as I was looking for things to do with some almond flour that I was given as part of my amazing birthday present from my amazing best friend Luke. He got me a 6 month subscription to a service which send you 6 unique and unusual ingredients every month. I substituted the ground almonds for the almond flour and cannot believe how nice it turned out. If you’re looking for something to occupy you on this sunny Sunday, I wholeheartedly recommend taking an hour to throw this cake together. It is delicious.

The cycle is easing off now and I am feeling more with it. My challenge to myself is to enjoy the next week as much as possible before I am back to treatment on Saturday. I’m not sure why I have had such a hard time with the blog recently, but I have. The last post didn’t feel cathartic or encouraging, it just felt like I was airing out a lot of dirty laundry and not getting any release from it. I hope it didn’t come across that way. I decided to post it because I thought the things that I was complaining about will likely effect others in my situation, and the ‘cancer experience’ is a key part of this blog, so I felt like I should put those frustrations out into the world. I also want to try and write when I am in a jarring and frustrated mood because, again, that is a reality of having cancer. You can’t always expect yourself to stay afloat when facing such adversity. I’m glad to say that I have enjoyed writing this post a lot more. It feels good to just mindlessly speak about things and not try too hard to be funny, to be interesting, or to write well. Sometimes it is just as good to write whatever is on your mind, in whatever tone you feel comes naturally. Hopefully it is still enjoyable to read.

My friend Charl took the below picture of Lucy yesterday and it is absolutely BEAUTIFUL. Her new favourite spot to sleep is on the top of the back of the sofa in the lounge, where the sun hits for the majority of the day. She can lay there sleeping for hours. I’ve witnessed her fall over the back 3 times now, usually because she is twitching in a dream. The drop is extremely big considering her size and the first time I was very worried about her. I was sitting on the other sofa when I saw something in the corner of my eye. I looked over and it was Lucy’s 2 front paws clumbsily trying to grab onto something as her bottom half had already disappeared behind the back of the sofa. Her eyes were fully opened as she tried to comprehend what was happening to her. She was looking me dead in the eyes as if it was my fault as she finally succumbed to the inevitability of the situation and fell to the floor. All I heard was a large (and fairly comical) thud! I ran over to see if she was ok. She had already got to her feet and was shaking off the embarrassment (I assume this is what she was doing as she wasn’t wet). She then enthusiastically pottered around to the front of the sofa, jumped onto it, climbed onto the arm, made her way up to the summit and went straight back to sleep in the same spot. We could learn a lot from dogs if we really wanted to, couldn’t we? If only humans were that resilient.

Lucy’s Perch on Top of the Sofa

A Picture Is Worth a Thousand Words

Sat with Dexter and Lucy – Taken 9th December 2021

Anna and I were sitting in bed 2 days ago, watching some TV with Lucy before going to sleep and looking at photos on her phone. She stumbled upon the picture of me above. We both sat looking at it and said the same thing. “Look how skinny I was,” I said as we both gawped at the photo. It is strange as I knew my weight was low at the time, but I never really stopped to consider what I looked like at the time. I wasn’t overly concerned with my outward appearance; I was far more concerned with what was going on inside my body. To my knowledge, the lowest my weight got was about 62kgs. This was a drop from about 75kgs, which is what I used to hover around, I believe.

I’ve never been someone who obsessively weighs themself or felt overly concerned with my weight generally. As a result, I’m not confident that my weight did hover around 75kgs. It may have been higher. When I was standing in King’s College Hospital during the first visit, back when I couldn’t eat, sleep or walk properly, I knew that the 62kgs they weighed me at was low. Perhaps I didn’t realise how low. By the time I had the procedure to install a stent in my bile duct, it had increased to about 66kgs. They asked me what my weight was during that procedure, and I responded that it was about 72kgs. I had forgotten that they had weighed me a few weeks prior; the stress of the diagnosis the day before took precedent in my mind. The result was that I was issued with a higher dose of general anaesthetic, and felt completely out of it for 24 hours. That is my theory anyway – it is almost definitely wrong. You probably always feel like that after being under. This was my first experience of it, so I’m not a beacon of knowledge or experience in the area.

I don’t know how much I weighed when the picture was taken, but I look very skinny. I don’t remember ever seeing that image of myself in the mirror or in any other pictures taken at the time. There weren’t many pictures being taken though. You usually take pictures to capture memories. This wasn’t a period that any of us were trying to remember. There is a strange duality about this period, though. It isn’t one that we want to specifically remember – a cancer diagnosis, unable to do any of the things I’d usually be doing and spending more time in hospitals than in my own home. The duality comes from the fact that I was worried it may be my life from now on, and I may never recover. Do I try to enjoy it in any way I can? Do we take pictures of us sitting in the hospital waiting rooms? Do I celebrate the procedure to install the port under my skin, allowing me to start chemotherapy? It’s a strange world to inhabit. You don’t feel like celebrating these things, but you probably should.

What it demonstrates is the power of reflecting on a situation. It is hard to recognise that you are at your lowest in the midst of a situation. Looking back at the time in hospital at King’s College, just after being diagnosed, I didn’t even recognise that I was experiencing it then. I thought I was doing a good job of coping with the situation. Thinking about killing yourself if the cancer gets worse is perfectly natural, I was telling myself, and it probably is, but it doesn’t excuse the state your mind must be in to be doing so. There was even a point where I vocalised that I had been thinking about it to my mum and sister. “The train junction at the bottom of Mow Cop, where the mainline trains come through at full speed. I could do it there,” I said to them casually as we sat in my room at the hospital as if I was planning a holiday. On reflection, I realise why they were both crying, but at the time it all seemed quite nonchalant and boring to me. I was surprised that they responded so badly, amazingly.

My weight is now at around 71kgs. A good amount of this may be due to me running some-what regularly again. This means I am gaining muscle back, which was probably what accounted for the loss of so much weight when I was sick. I went from running 5 or 6 times a week, to barely being able to walk without feeling sick and getting abdominal pain. I am also eating much better than I was. In my Road to Diagnosis series, I spoke about how I became a big fan of ice lollies when I was badly jaundiced because they were the only thing that I knew wouldn’t make me feel bad or give me pain. Apparently, a diet of orange flavoured ice lollies isn’t enough to sustain a fully grown male – I’m sure this is shocking news to everyone reading. Now I regularly cook meals, bake desserts and enjoy going out for meals again. Of course, the chemotherapy still means I cannot always eat properly, but it is much more manageable.

What the experience has taught me is that you really do have to try and enjoy your life, no matter what situation you are in. You have to try and make memories wherever you can and enjoy life as much as possible, despite the situation you are in. I have no idea what has caused my situation to get to where it is. I don’t know what started the cancer, I don’t know why there is a cyst next to my tumour, which blocked the bile duct and got me diagnosed, and I don’t know what has caused my tumour to shrink. Of course, I know it is primarily down to the chemotherapy, but I know plenty of stories where the chemotherapy did not work effectively enough to save someone’s life. It still may not save mine in the end, but I am feeling more hopeful and positive than ever. What I do know is that I have found a way to enjoy my life most of the time. I’ve managed to get back to running, I’ve picked up a keen interest in baking and expanded my interest in cooking, and I’ve spent more time with my family than I have since I was a teenager. They’re all things to celebrate, irrespective of the wider context which led to them. There are bad days littered in between, and I still feel very low sometimes, but that is expected. Making the most of a situation doesn’t have to mean being in denial of its limitations.

I saw the below video on Pancreatic Cancer UK’s Twitter earlier. It is about Robert who died of pancreatic cancer at the age of 26. After regularly going to the GP for 5 years without getting a successful diagnosis, he finally went to the hospital. The diagnosis was bleak, and he only lived another 4 months. I’ve said it before on this blog, but sometimes you cannot help but be humbled by another story or situation that you hear about. This story makes me feel like I have nothing to complain about with any of my journey thus far. It may have taken me a few attempts banging on the GP’s door, then the hospital, but I was diagnosed. The fact is this: I am lucky to have been diagnosed when I was, lucky I get the opportunity to ‘fight’ the cancer and lucky to be sat here writing this blog post. I’d have struggled to look Robert in the eyes and tell him he needs to enjoy his life after a diagnosis like that, and I would struggle to say the same to his family, who are now grieving. Although I didn’t think I was the only person to be diagnosed with pancreatic cancer in their 20s, it really did shock me when I saw this story and saw how young Robert was. Someone even younger than me dealing with a diagnosis that any individual, any age, could not comprehend hearing. I am in awe of his amazing mother for sharing his story and speaking so well about such a traumatic and life-changing event.

Ann’s Story About Her Son, Robert

To end this on a more positive note, and on the theme of incredible mothers and, in turn, women, I want to shout out a few in my life. As you may be aware, it is International Women’s Day today. There are so many women in my life who are worthy of an entire blog post for a lot of different reasons. I want to keep it brief, so I will only speak about those in my direct family.

Everyone who has met my mum, Helen Godley, says the exact same thing about her… she is the nicest, most caring person on the planet. My friend Lauren recently came over with her young baby, and my mum was beside herself. As I watched her cradle this child, I realised that I have never seen my mum with a baby. This is a lie of course. I have 5 siblings, 3 of which are younger than me. I have definitely seen my mum with babies plenty of times in my life, but I don’t seem to remember a single one of those times. I barely remember my life before the age of about 13, and even those memories are few and far between. The way she naturally rocked her body as she sat holding the baby amazed me. Her life has been dedicated to the well-being of others. She dedicates herself to it as much as any person I have met has dedicated their life to anything; she does this without expecting a thank you in return. She is an amazing person.

Next up is my oldest sister Becky. Becky is the oldest in the family, and it is a difficult family to be at the top of. We all have different lives and opinions, but we still manage to get on most of the time. I think this is where she gets her tenacity from, though, as this is a quality that she demonstrates in every area of her life. Having found a pure talent in opera singing, Becky has been extremely studious and dedicated in her persuit of singing. I’ve gone to see her a few times and it is truly incredible to watch someone you know in everyday life get onto a stage and perform in such a breathtaking fashion. Her boyfriend Alex is also an incredible opera singer. As a result, their dog Gus is also an opera singer of sorts, as the below video demonstrates. Becky has a huge heart. She is the one who organised and executed buying Lucy, the puppy that my family bought me to help get me through chemotherapy. It is a great demonstration of how thoughtful, organised and loving she is.

Gus the Opera Singer Practicing with Human Alex

Finally, my older sister Josie. She is next in line after Becky. The fact that my mum had 2 girls, then seemed to make a biological decision to switch to boys and have a further 4 more kids, may sound like a negative reflection on Josie. She is, in fact, one of the nicest people I have ever met (next to my mum, of course). I have barely heard Josie say a bad word about anyone (apart from her husband Keiran, who gets berated constantly by her). She is always smiling, laughing and doing whatever she can to help those around her. Lucky for her, she is also incredibly smart. So smart in fact, that she became a vegan about a decade before it was cool. She used to have to tell restaurants that she was allergic to dairy because if she said ‘vegan’ they would have absolutely no idea what it meant, or wouldn’t care to understand it, and just give her dairy anyway. I think on holiday she was even given fish once, but I may have made that up. Whoever meets her loves her, and it is for good reason. She brightens up every room she walks into and has been an amazing support to me during this dark time.

So, I am now anticipating the conversation on Thursday with my oncology team, where I will find out if they are accepting that I am ready for surgery. My brother Freddie has tested positive for Coronavirus this week and is isolating himself in his room. I haven’t shown any symptoms yet and hopefully, that will continue. As much as I’d like to delay my chemotherapy by another few days, it probably isn’t good to keep putting off treatment. I have to say, though, the further away from treatment I get, the better I feel. This is the first time I’ve had an extra week off, and I have so much more energy than I have had in months. I’ve been cooking like a madman. Tonight I’m going to make a Gochujang Glazed Celeriac with black beans. We’ve just signed up for an organic veg box delivery service. My challenge to myself is to use up the entire box every week without wasting anything. Let’s see how that goes…

The Family After Climbing Snowdon

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

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.

Treatment Cycle 6 + 1

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

Biscuits from Larissa!

Scan-xiety – 10 Days to Go

The Road to Recovery

Me after running 10K in Storm Eunice

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

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

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

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

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

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

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

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

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

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

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

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

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

Facing the full wrath of Storm Eunice

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

The tweet to Asics

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

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

A Pain in the Mouth

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

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

Anna’s Conservatory aka Our Bedroom Window

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

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

A Bell of Hope

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

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

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

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

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

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

Lucy after a walk on Sunday afternoon

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