Results Day: The End of Chemotherapy Scan

The Road to Recovery

Covid Check Mid-Cooking

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Waiting, Waiting…

The Road to Recovery

Mum and I Waiting to be Seen in the Oncology Office

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

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

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

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

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

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

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

Julie’s Lovely Card to Me!

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

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

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

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

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

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

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

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

Losing Hair

The Chemotherapy Diaries

Me and My Brothers in Primary School – Me, Freddie, Alfie and Greg (L to R). The Last Time I Had a Full Head of Hair

It feels like I haven’t written a lot for this series of late. I’m not sure why because I can’t see an obvious drop in momentum looking at the post dates. Perhaps it reflects the feeling that I have about me posting less on the blog generally, which I know to be true. I’m trying to cut myself a bit of slack, though. Making fewer posts but making them more interesting is better – right? I think so. Claiming that they’re more interesting is subjective I guess. I’m not even sure I believe that; it isn’t like I read back on my old posts regularly. My post dedicated to my good friend Drew Jones has been gaining a lot of attention these past few days according to the stats. I keep checking the news to see if he has been involved in a public scandal or something. I haven’t seen such news yet. Maybe it really is just sublime writing combined with a great character, a dangerous duo. Onto the topic at hand – hair loss.

I’m used to having very little hair. My hairline started to recede around the same time that I started puberty (not too far from the truth, but still mostly a joke). It was probably more like 16 or 17. I used to be extremely self-conscious about it. How couldn’t I be? No one wants their hairline to be very clearly receding before they have even made it out of their teenage years. I hadn’t even made it out of school yet. The self-consciousness was quite veiled and I think I mostly took the situation on the chin. There was no alternative – hats made me look stupid and I didn’t fancy maintaining a mohawk haircut. Various people had made the joke about my hairline looking like the McDonald’s M by the time I was about 21. It’s even more insulting as I truly dislike McDonald’s food. Every time I get convinced by someone to go, I end up with the same issue – I leave hungry yet feeling incredibly sick. The food is so terrible. The only thing on the menu worth considering is the McFlurry and they even rotate the flavours of that, meaning you find one you like and then they take it away. Perhaps I’m just bitter because of my hairline. At least no one makes that joke anymore (to my face); it’s probably receded too far for it to be funny anymore.

So I’m no stranger to hair loss. That being said, I am a stranger to the hair loss that I am currently experiencing. As I sat there in some shorts a few nights ago, I realised that there were incredibly smooth patches on the back of my legs. To my surprise, I started noticing them all over the top of my thighs too. My hair is quite light in colour so it isn’t very pronounced, but if you look closely you can see hair of all different lengths as you survey my legs. In some areas, it has completely disappeared, and in others it is just turning into stubble. I started noticing that a similar thing is happening to my arms too. Now I’ve noticed it, I can’t stop looking at how randomly it seems to have occurred. No rhyme or reason to where the hair has vanished and where it looks the same as it did before. As usual, I’m looking for a pattern that explains it – a way of understanding something that is probably just random. I do it about the cancer and now I’m doing it about the loss of hair.

It is almost vindicating to know that I have experienced some hair loss during chemotherapy. For the majority of people who have never experienced treatment, it is probably the most quotable symptom of it. I’m assuming if you surveyed a random 100 people and asked them what negative effect chemotherapy has on your body, they would say hair loss. It is part of the image conjured up in the media. A person with ghost-white skin and no hair, attached to a machine and hanging onto life by the skin of their teeth. I’m sure this is some people’s experience, and I don’t mean to downplay how awful it must be if it is. There’s another side to the story, though, and it is this side that dominates the wards I sit on during my treatment. It is mostly normal looking people, dressed in the same clothes they’d probably go to the shops in, trying to avoid eye contact, likely worried that it is considered prying under the circumstances. Sometimes you see someone who looks more ill and you feel sympathetic towards them – but they usually smile back if you catch their eye. Most people don’t want sympathy. They’re probably sick of the world looking at them as a wounded animal. People are much stronger than they appear. My dad says it about my mum. She is the most loving and sensitive woman I know, but I’ve seen her be incredibly strong. I remember being at the hospital with her visiting my grandad just before he died. He was asking where Jessie was (his late wife and my grandma), and kept thinking that he was in the bedroom of their house. “Is Jessie going to bring my tea up?” he asked over and over again. It was hard to be around; I can’t imagine how hard it was for my mum… but she had to leave the hospital that day, likely to make a meal for 6 ungrateful children, before tackling more of the endless washing pile that never got smaller. Life goes on. We all understand that, even if we don’t like it.

A few days ago I received a letter from The Job Centre stating that my last sick note ran out at the end of April. It informed me that until I get a new one from my GP, they cannot process my request for Employment and Support Allowance (ESA). To continue with the story, we need to cover some fairly boring informational stuff. Bear with me.

When you are on long term sick in the UK, the employer is obliged to pay you Statutory Sick Pay (SSA) for 28 weeks. Once this period is up, you have to apply for ESA directly with the government. The process is then managed by The Job Centre. You are requested to have regular meetings with a Careers Advisor. It is strange considering I am technically in full-time employment, but have too much cancer/chemotherapy to deal with to allow me to work. You do feel a little like you’re under investigation… but that’s because you are. There will be people who try and abuse the system, though, so it is necessary. The careers advisor I spoke to is a very lovely person who took away a lot of the feeling that I was doing something wrong, so that made up for any negativity I felt from the letters.

I contacted my oncology team and requested another sick note as soon as I read the letter. My original one was issued by King’s hospital when I was diagnosed with cancer. Other than this, I’ve never needed a sick note in my life so I’m not familiar with the process. They responded in the afternoon stating it is my GP’s responsibility to issue sick notes. Fine. I decided to just walk down to my GP as I had emailed two weeks ago about a few things but hadn’t heard anything back. I’m feeling pretty good right now so why not sort out some wonderful admin. Is there anything more sexy than a little bit of cancer admin? There definitely is – anything.

As I stood waiting in the queue to speak to the receptionist, a woman joined it behind me. To my surprise, I heard a voice say “Got toothache do you?” I turned and realised she was talking to me, before then realising that I was standing with my right arm folded across my stomach, and the other elbow resting on it, with my palm resting under my chin and hand across my cheek. I laughed and said “Nope… No… No.” I used to have a bit of wit about me but I’ve struggled more with social interaction since starting chemotherapy, I’m not sure why. She then said, “…because I was going to say that you’re in the wrong place.” She clearly didn’t want to waste a punchline that good. I couldn’t tell if it was a passive-aggressive way of trying to get one person closer to the reception or if she was trying to be friendly. I nodded and laughed a bit and then turned around. We didn’t talk again.

It took about 10 minutes before I was at the front of the queue. As I approached the desk, I explained that I was undergoing chemotherapy treatment at The Christie for pancreatic cancer and that I had an issue with my sick notes. The very lovely receptionist smiled and asked me to wait a minute whilst she speaks to her colleague, before popping her head into a back room. She then told me to go around the corner to resolve my issue, as it was considered ‘private’ – a very lovely gesture indeed. They resolved my issue quickly and I had my sick note about 5 minutes later. It was a great success.

As I was leaving the surgery, I saw the woman who made the joke about my tooth. I think she overheard that I had cancer and was on chemotherapy, as her demeanour was totally different towards me. She looked at me wide-eyed and gave me a half-smile that felt sympathetic. I smiled and told her to enjoy the rest of her day. She said, “take care”. I’ve perhaps created a story out of this in my head, but I’m not sure. I felt the sympathy, though. I understand the sympathy to an extent – I feel sympathy for anyone who tells me they are suffering from, or know someone who is suffering from cancer. It is especially so when they are particularly young or they have a particularly bad diagnosis. I guess I fall into the ‘particularly young’ category for some people. It made me think about what a ‘cancer patient’ really looks like. I’m constantly being told that I look great given what is going on, which is a lovely compliment to receive. I don’t always feel great, though. In fact, sometimes I feel absolutely horrific. And people seem to conflate looking good to how your battle with the cancer is going – something which will correlate to an extent but doesn’t hold weight in a lot of cases. I may have been running ultra marathons with cancer for over a year. That’s how long I was displaying symptoms of something, not understanding what it was. No one ever commented on how good I looked then!

The point is that cancer can impact any of us, and it isn’t easy to identify someone who has cancer simply by looking at them. We don’t walk around hooked up to a chemotherapy machine, holding a mop bucket in case we throw up at any time. I follow a lot of accounts on Twitter of people with a terminal diagnosis who run marathons, cycle one hundred mile races and push their bodies to extremes. Usually, they are raising money for charities like Children with Cancer and posting selfless messages of positivity and hope, which brings me to the final part of the post.

If you are in the UK, you have likely read the name Deborah James in the news over the past few days. She is the host of a podcast called You, Me and the Big C, a podcast where the hosts speak candidly about their experience with cancer. The founder of the podcast, Rachael Bland, died in 2018 after a 2 year battle with cancer, only 6 months after the podcast was started. Unfortunately, Deborah James has announced that she is now on hospice care and is preparing to die. She wrote the below on Twitter.

I tried to read her final column for The Sun, but I couldn’t get through it. I wish I could, and I will eventually, but it is too much for me to manage right now. The details of decline and descriptions of ill-health towards the end of a life ruined by cancer create too vivid a picture for me. I hate to say it because I feel selfish for not persevering through someone’s written experience of something that is actually happening to them right now. Me reading it is nothing compared to them dealing with it. My issue is that I still do not understand what the actual dying part of cancer is like. I’ve never really understood what is the final thing that kills you; I know that it will be different for different people, but I’ve often pondered with morbid curiosity over what the dying phase actually looks like. Not because I want to know, but because I am scared to know. Deborah has addressed these things too well in her writing, and I just can’t read it without feeling terrified to my core of it happening to me. Death isn’t something that scares me, but the process of getting there is hard to fathom. You find yourself hoping that when it happens to you, it is a quick decline for both you and your family. I wanted to pull out the following quotes from the article:

“I do not want to die – I can’t get my head around the idea that I will not see my kids’ weddings or see them grow up – that I will no longer be a part of life that I love so much. 

I am not brave – I am not dignified going towards my death – I am simply a scared girl who is doing something she has no choice in but I know I am grateful for the life that I have had.

What an incredibly humble and moving way to summarise the destructive nature of cancer, and how its victims are left to simply observe as they deteriorate, to the detriment of themselves and the loved ones around them. I read that she was running 5K’s every day recently, and now cannot walk. It makes me resent this image of cancer sufferers as people who cannot strive to live a normal life, keeping physically active and doing what they can to keep themselves feeling as well as they can under the circumstances. People seem surprised to learn that I am trying to run whilst on chemotherapy. Sometimes I think people believe it must mean that treatment is easy for me, or that my body is naturally set up to cope with it. This last month has been extremely hard for me on chemotherapy and I’ve struggled to do a lot. It showed me that things can change quickly, and the state of your health is never as out of your hands as it is with a cancer diagnosis. You feel impotent in the face of it, so strive to control the things you can – keeping yourself fit, spending your time doing things you enjoy and staying as positive as you can. Every second you spend feeling any other way is wasted because you’re more cognizant of how valuable those seconds are, and you want to spend them making a positive impression on the world. No one has done that more than ‘Bowel Babe’ Deborah James, who has raised millions of pounds for Cancer Research UK and used her platform to educate, support and humour the masses.

I wish I had a positive way to finish the post, but I’m struggling to muster anything of substance. Deborah’s beautiful words just remind me what a dark, insipid beast cancer is for taking such a wonderful person away from her family, friends and followers at such a young age. I hope her final weeks are spent full of love and support and wish her family well.

Chemotherapy and Motivation

Time is passing by too quickly again. It’s somewhat a good thing considering I’m in the first week of the chemotherapy cycle, and always wish for this time to dissipate so I can enjoy the ‘recovery’ week. Of course, the recovery week isn’t really that. Week 2 is often where my mouth ulcers start playing up. I looked at my tongue in the mirror yesterday and noticed that I have some kind of scarring all down the side of my tongue. I read a bit about it and apparently your mouth recovers quickly so I’m hoping it’ll be back to normal after a few weeks sans chemo. The cycle is plagued by lethargy, though – my number one enemy. There is nothing more frustrating than having big plans for your day, only to lay down and not get back up for hours. It happened Tuesday, it happened Wednesday, and it nearly happened yesterday. I managed to finesse it on Thursday. Just.

I was laying on the sofa with the dogs and I was fast asleep, unbeknown to me. It wasn’t a planned sleep. It was one of the chemotherapy surprise sleeps where you wake up and have to recalibrate for a few minutes, figuring out which world is the dream and which is reality. The doorbell went and the usual scurry ensued – Dexter, my mum’s dog, suddenly bounced up and started barking to high heaven, surveying the house and being as obnoxiously loud as possible. He has obnoxious down to a tee – last night he brought in a plant pot from the garden, shook its contents all over the lounge floor and then pulled the plastic pot apart, just to make sure it really annoyed whoever was lucky enough to discover it later. Anna found it and she was very annoyed. Mission accomplished, Dexter.

Through the haze, I heard my mum greet someone at the door. The voice was that of my friend Finch – he had come to collect an item of clothing he had left here earlier in the week. He popped his head around the door just before he left. I’m not really sure what we said to each other, or if I said anything at all. Whatever happened, I wasn’t really a part of it. I just remember him smiling at me and saying bye. That triggered something in my brain. All of a sudden, I was determined to not let this be another throwaway day. I didn’t need the sympathetic eyes of an onlooker making me feel broken, like those looking into the enclosure at a zoo.

After another ten minutes or so of questioning how committed I really was to moving from the sofa, I finally got up. I went straight upstairs and got my running stuff on. Enough is enough. When they weighed me before treatment at the hospital on Saturday, my weight had increased to 76.7kg. That should be something to celebrate, but I actually think it is starting to get too high. It is much less worrying than the 63kg I recorded last November. I still feel a pressure to keep my body as healthy as I can under the circumstances, though. The last month has been laced with inactivity and illness; I really haven’t done a good job of keeping myself very active. Even walking the dog has been a bridge too far most days. I do tend to eat quite well, so at least I have that on my side. Apart from the occasional croissant… I had three in one day whilst I was in London last week. You can’t get nice croissants near my parent’s house in Cheshire so I thought I’d overindulge whilst I had the chance. But other than subsiding on croissants alone for three days, I have an alright diet.

I stood outside the house in my shorts, long sleeve shirt and gloves and braced as I started my running watch. It was always going to be a crappy run and I knew it. The temperature was also quite warm, about 14 degrees celsius, but my hands and feet just felt freezing. I had to wear extra thick socks to try and get some feeling in the end of my toes, but it didn’t really work. For the duration of the run, I kept trying to figure out if I could feel the end of them or not. They’ve been tingling for about three weeks now. I told the nurses and they said that it is still permissible to continue with treatment, so long as it isn’t stopping me from walking. The risk is that the chemotherapy permanently damages the nerve endings, something which the medical team try and avoid. The alternative is to lower the chemotherapy dosage, but it seems pretty pointless to lower the amount of a drug to save your nerve endings if it may make those drugs less likely to save your life. Here I was successfully running, so balancing didn’t seem to be a problem. It’s not a problem until it is, though, and when it is a problem, it likely ends with my face on a curb and legs extended to the sky like a totem pole. Not worth thinking about, just keep running. I got some funny looks because of the gloves but I’m way past caring about funny looks.

I just about managed to finish the 5km. It took a lot more walking than I’m used to, but that’s Ok. My heart rate kept sitting at 190bpm so I figured the least I could do was walk in intervals. As I got back into the house, I retreated back to the sofa and had a well-earnt nap. I did feel like I’d achieved something, which made me feel better. It made me reflect more on the week thus far.

I’ve felt more paralysed than I am used to this week. I’m not sure if it falls into the category of depression or is just the known side effects of the chemotherapy culminating – the lethargy and tiredness in practice. I’m trying to take more of an active role in critical things going on in my life, such as reaching an agreement on a return to work and applying for the various government grants that I need now that the employer’s statutory sick period is up. It is hard to stay motivated and I’m frequently hitting hurdles. I called to ask for an update on one of the Government grants and they informed me that the next stage is an interview. When I asked them if that would happen soon, they responded that it would likely be the end of June. Despite them backpaying you the money if you get approved, it makes me wonder how people survive in this situation. I’m lucky as I have parents that I can live with, a flat I own in London that I can rent out and an amazing family who are always offering to help me out. I’m sure that others aren’t so lucky. There are just so many things that you don’t want to have to think about in this situation, but you find yourself worrying about them constantly. You actually have more time than ever to ponder things. It can be quite dangerous if you have an active mind. I consider mine quite active, and I am starting to struggle to occupy myself lately.

That is why it is important to stay motivated. It almost doesn’t matter what you are staying motivated for, so long as you are feeling it. The runs help to motivate me. I ended up going out in the afternoon and walking the dogs with my mum too, which also lifted my mood (and earnt me another hour of nap and a bath last night). They sound like little things, but they make a big difference to my energy levels and mood. Those small changes in energy level and mood then give you another 10% worth of effort to put towards something difficult that is on your mind. Yesterday, I made a few more calls and sent a few more emails about the grants and the return to work in the afternoon after getting back from the run. That left me feeling much better last night.

Now, I’m off to Whitby for the weekend to introduce little Lucy to the sea for the first time. No more worrying about any government grants until next week!

72: A Post About Averages

The Road to Recovery

Sleeping on the Sofa with the Dogs – Typical Week 1 of the Chemotherapy Cycle

This will be my 72nd (published) post on the blog. As soon as I saw that the last one was 71, I knew what I wanted to talk about in it. 72 was not a significant number to me a year ago. My readers who are familiar with pancreatic cancer, or are good at internalising figures and have read my blog for a while, may know why 72 is a significant number now. It is the average age of diagnosis for Pancreatic Cancer victims, or I believe it is anyway. Originally I read 76, but I have since read 72 on various charity websites, so that is the one I regularly quote now.

I feel guilty for frequently using this statistic to comfort myself. “You’re much younger than the average person with this cancer, that must count for something.” It isn’t just me who says these things – I get it from doctors, nurses, friends and family. It does bring me some comfort. You have to find ways to cope under the circumstances you find yourself in. When I sit down and think about those people being diagnosed in their 60s, 70s and onwards, though, the feeling isn’t one of comfort. I feel sad. Even though it is better to be diagnosed with cancer at that age as opposed to in your 20s because you will have lived a lot more of your life, you still have a life that you want to hold on to. You likely have children you love, and you may have grandchildren you want to see grow up. It cannot be easy being diagnosed with pancreatic cancer and having to read the bleak statistics around it, knowing that you cannot find the same natural defences against these figures. The typical diagnosis is also in advanced stages – mine was locally advanced. That means that a lot of these people are also being diagnosed too late, making their chances of long term survival even slimmer. It is sickening, really. I’m not sure if locally advanced actually falls into the category of ‘advanced stages’, but I would imagine it does. I think, because of my age, the oncology team just felt that there were a lot of options for me. Perhaps there wouldn’t be so many if I was 72, I’m not sure. It still guarantees me nothing, of course. But there are no guarantees in life. We’re regularly graced with threats of nuclear war in the news right now. It isn’t a nice place to gain some perspective on my personal circumstances, but I cannot help taking some from it.

These feelings are tempered when I consider the case of Nigel, who I have spoken about on this blog a few times. His daughter contacted me through the blog and told me about his story. He was diagnosed at 71 – a year short of the average. I first spoke to him on the phone about what happened to him. He was diagnosed and given 8 months to live. After having an incredibly successful bout of chemotherapy, his tumour had reduced by 55% and the cancer, which had previously spread to his lymph nodes, had completely disappeared from them. Nigel finished his 6 months of chemotherapy treatment still believing that it was palliative, before receiving a phone call from the hospital a month later informing him that they were willing to try and operate. He’s now 3 years clear and full of beans. We’ve met up frequently and our families have become close. They’re invited to Anna and I’s wedding and I can’t wait to celebrate the day with them. Their support has been incredible and unrelenting throughout my treatment.

Nigel During His Treatment – Taken By His Lovely Wife circa 2018

His story is unusual, though. The statistics will tell you that much, although I’m not going to dig into them too deeply here. I’ve done all of that in previous posts and I’m trying not to dwell on them too much; no matter how young you are, they don’t give you a lot of hope for survival. Nigel’s story tells you that dwelling on the statistics isn’t helpful. It actually tells you that it isn’t worth dwelling on the things being said to you by the medical team too, but that is much harder to implement in my experience. If my team told me that I had 18 months, I don’t know how I’d hold myself together. But, I would have said that about any cancer diagnosis a year ago, so I actually feel confident that if something like that does happen to me, I’ll find a way through it. Especially with the support that I have around me. You quickly adjust to things – just like how we all adjusted to the ‘New Normal’ during Covid; the lockdowns, the new rules, the changes to social etiquette. We always adjust.

So, I strive on toward recovery. Not an average, not a number, not a statistic. Just another person with cancer who is trying to beat the odds, whilst trying not to dwell on those odds. My chemotherapy line will be taken out at some point today when the district nurses come round – that always makes me feel good. I finally get to shower again! Then I have one more session of chemotherapy before the big scan, which has been booked for Tuesday, May 17th. It is a bit unusual that it is booked in week 1 of the cycle – it was in week 2 last time and I thought the oncologist said that this was the most logical time to do it. I don’t mind, though. I might be feeling a little bit dodgy that early in the cycle but you get pretty good at feeling dodgy when you’re on this type of chemotherapy!

I came across an inspiring story yesterday. Of course, its origins are tragic, as they often are with pancreatic cancer. Pia Eaves was a loving wife and mother of two daughters. She died of pancreatic cancer at the young age of 54, only 11 months after being diagnosed. The Walk for Pia campaign is a challenge created by her family to raise £100,000 for Pancreatic Cancer UK running from April 20th until May 1st, yesterday. During this period, they walked 200 miles and have raised over £90,000 – an absolutely incredible feat. I am totally in awe of them. Pia was a fitness instructor and kept herself in good shape. She was also well below the average age of diagnosis for a pancreatic cancer sufferer.

It was hard for me to not relate to what I was reading as I studied the website, reading the details of her life, and the disease which ultimately brought it to a premature close. I was running ultra-marathons just weeks before I went into the hospital, where we started to establish that what was wrong with me was not going to be easily sorted. Things continued to spiral downwards from there. The PET scan and endoscopy procedures are to thank for my diagnosis. Before that, the medical team seemed sure that my issues were all caused by a cyst on my pancreas, leaving me jaundiced. I’ll never forget the look on their faces as they walked into the room to deliver the final, crushing diagnosis… pancreatic cancer… spread to the artery, but not spread outside of the pancreas… straight into treatment… need the chemotherapy to ‘take’… an extremely aggressive form of cancer… the condolences as they left the room… the cries that echoed around me… the grin on my face and the shaking of the head… How is this really happening? I still ask myself that sometimes, but less frequently now. It doesn’t matter how it is happening, it just is. There isn’t a why, there is only a what. I’m ok with it.

On that note, I’ve been looking at jobs in cancer charities that I believe I could do with my experience and skills. There are a few in data and analytics that sound appealing. It made me feel motivated and empowered, feeling like one day I could be wearing my survivor status with pride, and using it to energise myself in a role making a difference in people’s lives. People who are suffering in similar ways to the way that I have suffered, striving to survive in the way that I am. There are so many of us out there that it forms more than just a community – it is a whole section of society. It only seems to be growing in number as the field of medicine identifies more effective ways to diagnose, and is successfully doing so earlier. I’m not even sure I would have been diagnosed 30 years ago with the symptoms that I was displaying. Maybe not even 20 years ago. I think it shows that I am in a good place that I am seriously considering a long term future, and what plans it might hold for me. Hope is a valuable thing when you’re fighting a life-threatening cancer. Even when the statistics tell you that you have a 1% chance of surviving 10 years past your diagnosis, you can hope harder than anything that you are in that 1%. Let’s see what the scan says, and what the next stages of treatment will hold. It’s an exciting but scary time, but it is necessary to move things along.

I want to dedicate this post to everyone who has been affected by cancer. Whether you are grieving a loved one, a sufferer yourself or you work with people affected by it. There’s a lot of pain and suffering involved in cancer, but there’s an opposite side of the coin where it can bring out amazing things in people; raising £100,000 in memory of a lost mother, to the benefit of the thousands of people who will be diagnosed with pancreatic cancer every year. I read on the website that around 8,924 people die of pancreatic cancer every year – an average of one person every hour… yet the cancer only attracts 2.1% of the UK Cancer Research Budget, it is the 5th deadliest cancer in the UK and has the lowest survival rates of the 20 most common cancers. As a sufferer of the cancer, the biggest source of hope I have found is by speaking to people who have beaten these odds, and who continue to send me messages of positivity, encouragement and unfaltering support. They tell a different story to the statistics – one that you rarely find online. That story says that it is beatable and that there is a future beyond it.

Heartbreaker Lucy – The Ultimate Chemotherapy Companion

Legs Eleven: The Penultimate Cycle

The Chemotherapy Diaries

Another treatment day rolls around. I had secretly hoped that my platelets would be too low for treatment to go ahead. My pre-treatment bloods appointment was on Friday this time at 11:05, the day before I come into the hospital for treatment. I’ve developed a habit of looking at the amount of blood on the cotton wool when I take it off my arm after my blood test. If there is a larger amount of blood on the wool, it is an indicator that my blood platelets may have been lower because my blood hasn’t clotted as quickly as usual. If there is only a small speck, I know that they’re likely to be fine. As I sat in the car park, about to drive home, I took the cotton wool off and assessed it. There was more than usual, but not as much as the last cycle where treatment had to be delayed due to low platelets. For the rest of the afternoon, I kept my phone close to me in case the hospital called. They didn’t, and I find myself starting to write this whilst sitting on the chemotherapy ward, receiving treatment number 11. It is for the best that it has gone ahead really. I’ve only got to do this one more time after today and then I will have finished the full 12 sessions. My future from there is in the hands of my oncology team.

This morning, I signed in at the desk as normal and handed over my hospital appointment card so the receptionist can write down my next fortnight of appointments. I sat down for about 3 minutes in the waiting area before my name popped up on the screen. One of the advantages of having your treatment at 8:30 in the morning on Saturday is that you beat all of the chemotherapy queues. When I attend appointments during the week, I sit listening to the chitter-chatter around me in the busy waiting room. British people love to complain about trivial matters, so when you throw cancer and chemotherapy into the mix, they really get the wind in their complaint sails. I understand it to an extent and I have certainly commented on the wait times to friends and family, but some of the conversations you overhear in the waiting room start falling under the ‘toxic’ category. “I’ve never waited less than 2 hours for any appointments at this hospital. They’re absolutely useless,” one elderly man said to a lady sitting next to him as I waited for my blood appointment on Friday. I laughed a bit to myself and he turned and shot me a glance. I didn’t return the gesture – I’m here to fight cancer, not someone’s grandad. It was such a gross exaggeration that I couldn’t help but laugh. I also don’t like the way that they try and influence any stranger sitting near them that will give them an ear too. It just feels wrong. Notice that I used the word ‘commented’ instead of ‘complained’ when referring to myself… I’m clearly tactically absconding any guilt I may feel at having complained in the past. I don’t try and influence people around me, though, and I remind myself that the hospital is running a complex operation involving people’s lives. We should be grateful that we get such incredible care without being bankrupted. I appreciate that it is hard to fully feel that when you have waited for two hours to start your chemotherapy treatment, but we should still try.

Anyway, I made my way upstairs and sat down in the chair. I opened up my appointment card to see that I have an appointment with my oncology team this cycle. That is quite unusual. The nurse handed me the steroids and anti-nausea medication to take before my treatment starts. “Do you know if it is standard procedure to meet with your oncology team during cycle 11?” I asked. “Yes it’s part of the standard protocol,” she replied, smiling at me and putting her hand on my shoulder. “Thank fuck for that,” I didn’t mean to swear, it just happened. The nurse laughed. I had to take my top off so they could reach my port to insert the needle. There was a student nurse shadowing her today, which meant I had to talk two people through my tattoos this time instead of just one.

Once the treatment was up and running, I studied my appointment card again. Next to the final treatment appointment, the receptionist had written ‘last one’. They usually leave this column on the card blank. I wondered if this was her communicating a positive message – “you’ve done it,” I read in the subtext. Maybe that’s just my mind romanticising things. The same thing happens when I see my hospital number and think about its familiarity now. It feels as comfortable as my middle name or the numbers that make up my birthday. When I picture my hospital number in my head, it has a blue background like the hospital appointment card. I want to get it tattooed on me one day. Hopefully, it will carry a message of survival and strength, not one of sad solace. A song that means a lot to me came on random through my headphones as I sat contemplating it. The moment felt anthemic, like a scene from a film when something significant happens and a song introduced earlier in the theme comes on to underscore it. Is this what real hope feels like? I hope so. Hopefully, I’ll hold onto it until the scan.

“Last One” – My Appointment Card

I’ve made the nurses a cappuccino cake today. It has gone down very well. The cake consists of two chocolate sponge cakes, with whipped cream used to sandwich them together and then to decorate the top. The whipped cream has a small amount of strongly brewed coffee added to it. You have to let the coffee cool down before adding it so it doesn’t spoil the cream. The top is then dusted with drinking chocolate. It’s a very delicious cake if I may say so myself, and if I may not, I have been told it is delicious by 6 nurses so far, so it is delicious. Capiche?

Cycle 10 was a weird one. Having tested positive for coronavirus right at the start of the fortnight, I had a rough first week. Most of it was spent sleeping and feeling extremely lethargic. My throat was hurting a lot from coughing, something which doesn’t seem to be abating despite me not having a consistent cough for over a week now. I’ve also been feeling much shorter of breath than usual. About a week ago, I was baking when I started feeling very light-headed. Looking at my watch, it told me that my HR was 115 – very high considering I was standing idle and mixing some ingredients together. I had to go and lay down for 20 minutes then make my way back to the kitchen to resume. It shot straight back up again as soon as I did and I gave up caring. The cake won’t make itself. I think that was the first time I made the cappuccino cake, come to think of it. I always practice the cake I’m going to make the nurses earlier in the cycle to test it. Maybe it was the anticipation. If it was, entering Bake-off would definitely give me a heart attack. Would be good for ratings though, I guess.

There was a huge positive in cycle 10, though. I finally made it to London for a visit! My good friend Dan took me in for a few days. I knew I wasn’t in hospital until the Friday for my blood test and I was feeling pretty up to it, so I figured it was as good a time as any. I headed down on Monday and stayed until Thursday. I saw my lovely sister Becky in her workplace at The British Library. I hadn’t been in the building before so she showed me around. We had some delicious kombucha, a drink that my other sister, Josie, used to brew when we lived together in London. I’m not sure if you’ve ever seen kombucha brewing, but it is disgusting. She used to brew it in a large glass bottle on the kitchen counter. Inside was a cider yellow liquid with a thick culture floating in the middle. It wouldn’t look out of place in a horror film, in that scene where they pan around a dimly lit room with unusual-looking objects in jars of fluid, some reminiscent of human or animal remains. I tried to block the image out of my head as I sipped from the bottle. This kombucha was raspberry flavour; the raspberries really performed a miracle. The pleasant taste of the drink was stronger than the memory of brewing kombucha and I couldn’t pay it a bigger compliment.

My other lovely sister Josie (Kombucha Josie as she will now be known in the blog) and her husband Keiran then took me out that evening to Mowgli, an Indian street food restaurant that I’ve been wanting to try for a while. Keiran likes to brag about how rich he is after a couple of good years in his job. I let that slide so long as he offers to pay for things. You gotta put your money where your mouth is if you’re going to make those claims! And he did, to be fair to him. He’s also one of the funniest people I’ve ever met, so he does bring a lot to the table. That’s pretty much what he wanted me to say anyway. He paid healthily for that compliment so I hope he enjoys reading it.

The trip did so much for my mental well-being. You can get trapped in cycles in life and not realise how negatively something is affecting you. My cycle is mostly centred around my treatment. I didn’t realise how much the constraints of it were weighing on me. Doing something which feels nuanced and different can trigger a change in your mind. As I sat on the train home from being in London, I realised that I have been stuck in a bad place. For all the love, support and care that I feel from my family, the people who message me through the blog and beyond, I feel bad saying it. There are so many amazing people supporting me and I’m incredibly grateful to everyone. The human mind is complex, though, and you yourself can be clueless as to where your head is really at. I felt a calm and pleasantness that I hadn’t for a while. It felt like I’d achieved something. I managed to see a few of my amazing friends whilst down there too – I thought about them and smiled. I can’t wait to go back.

It almost certainly comes through in the blogs. The fact that the volume of blogs has decreased so much probably speaks for itself. I haven’t been filling my time differently and I’m still not working, so it isn’t due to any changes in the amount of time I have available to do it. It’s hard to put yourself out there when you are feeling down; I’ve certainly felt more conscious of the things I’m writing and how negative they sound, which makes me withdraw more. I’ve also felt quite critical of myself recently, not finding the things I want to write about interesting enough, and so deciding to scrap a lot of ideas. I’ve also had a few tough cycles in a row which bring their own challenges. Still, the blog started out as a place of escape. I hope that it remains that way. It is feeling that way at the minute.

Again, I want to thank everyone for their support. I wrote something on LinkedIn last month and received so many messages through that platform, from old friends as well as a few strangers who related to the content. It speaks again of the power of social media and the benefit to be derived from it. I was slow to respond in some cases but hopefully, I got back to everyone. If I didn’t, send me another message telling me how horrifically rude and undeserving of your well-wishes I am. I can take the criticism. I’ve got cancer and I seem to be dealing with that. Sort of. Sometimes.

That does remind me – I received my first ‘hate’ comment on the blog. It was quite comical and I wish I hadn’t deleted it from my ‘Spam’ section. I actually regret not approving it and letting it sit on the blog. It started off with a backhanded compliment saying something along the lines of “This blog post had such potential. It was unfortunate to find just another person complaining and moaning about things in their life that they should be grateful for.” The person actually wrote quite the paragraph critiquing me. The funniest part is that they had written the comment on one of my older blog posts which really wasn’t very negative at all. I read it back and felt genuine confusion over it. Maybe they had written it on the wrong post? I’m not sure. It’s good to read someone’s opinion, though, and I actually agree that I have moaned about things in this blog that I should feel grateful for. It’s hard to have that sort of purist approach to everything in life though, right? I think I am quite a conscientious person generally, and I like to try and check myself on the things I am feeling, saying and writing. The only reason that I deleted the comment was that it didn’t feel like it was offering me a lot of value to have publically sat on the blog, alongside other people’s sincere comments, where they are sharing personal stories and well-wishes. Next time I will approve it I promise, whoever you were. I’m ready for round 2.

It’s been a while since I’ve shared any Lucy content. The below video may fool you into thinking she is running through extremely tall grass. She isn’t. She’s just THAT small. Damn, she’s just that cute, too. We like to put videos of her in slow motion to add to the comedy. I hope you enjoy!

Lucy Running Through the Grass

Covid, Meet Chemotherapy

The Chemotherapy Diaries

It finally happened, I’ve tested positive for Covid. After avoiding it for an amount of time which can only be described as unfashionable, it’s finally got my number. I had my suspicion that this would happen. Anna tested positive a week ago today and we had been isolating from each other around the house. It all seemed to be going quite well. Saturday morning, treatment day, I was still testing negative and feeling fine. Knowing that a major impact of the chemotherapy on the body is that it impacts your immune system, I did speculate that the defence my body was currently putting up was probably about to diminish. It may have just taken this long to establish itself anyway; I had kissed Anna 10 minutes before she first tested positive, which was the most confusing part for me. However I caught it, I’m now finally part of the ‘C’ club. Not the Cancer one, the Covid one. Although I am part of the cancer club too, and I’m on chemotherapy. I even have a series called The ‘C’ Word series that tries to avoid talking about cancer. I’ve also noticed that I frequently sleep in a C shape now because it seems to cause me the least pancreatic pain through the night and in the morning. I bend my back like I’m bracing for impact on a plane, then tuck my legs into themselves. It’s very comfortable. I’m starting to feel a bit like Jim Carey’s character in The Number 23 where he starts to obsess that the number 23 appears everywhere in his life. The Alphabetical C with Dan G.

Saturday’s treatment was quite straightforward. The hospital seemed quieter than normal. I remember it being similar around Christmas time when I was in for treatment. I had asked my nurse that day why it was so quiet and she had replied that many people don’t have treatment around Christmas time, especially if their treatment is palliative. They opt to enjoy more time with their families instead. I wondered if that same principle would apply around Easter weekend too, with there being 2 public holidays on either side of it in the UK.

I arrived a little late after sleeping in until 7:40am. Oops. We usually leave the house at around this time, so it was considerably later than normal. We were only 7 minutes late to the hospital though, so it wasn’t too bad. I apologised for my tardiness as I signed in at the reception, then had to explain was tardiness was to the receptionist. She originally thought I was apologising for having a mental ailment which was extremely embarrassing for me; perhaps I’ll stay clear of using the word tardy so liberally in future. It is such a nice word, though. My name was called about 5 minutes later and I made my way upstairs to the ward.

It was all pretty non-descript from here. They weighed me, stuck the line into my port in my chest, and treatment had begun. For the first time since starting chemotherapy, I actually did very little during the session. I didn’t even use my headphones. I was just sitting watching videos on Youtube with subtitles on instead. I’m not really sure why – usually I get a good 2 or 3 hours of writing time in, and will read for at least 45 minutes. I did notice that I am becoming a bit of a chemo veteran as I eavesdropped on the various conversations going on around me. Straight across from my bed, there was a man who was attending his first session that day. He still had the dressings on his neck where they had inserted the port. I heard him say it had been installed Thursday morning. That was the exact same timeline as mine – Thursday morning they installed it and Saturday morning I was at the hospital, receiving my first dose of treatment. It felt strange thinking of all that had gone on between then and now. He seemed to be dealing with it well, though, and I hoped that was because his diagnosis wasn’t too bad.

I also heard a woman in a bed next to me boast that she was on session 7 and only had one more to go. She was dishing out advice on how to cope with some of the more uncomfortable side effects. My competitive side was kicking in and I was tempted to shout over that I was actually in the process of hitting the double-figure mark – session number 10. Maybe I’d sign an autograph for them or dedicate a blog post to them, where I impart all of my learned wisdom to them. She actually had better advice than me and was stating all sorts of hacks for the morning of treatment, the day before etc. Perhaps what I was starting to feel was inadequacy. She was recommending being extra healthy the day before your treatment; that’s usually the day I want to scoff as many takeaways and run as far as possible before I have to deal with the chemotherapy fog again for another week or so. Maybe she’s right. I should have asked for her autograph. She might have even had her own cancer blog that I could have followed. Damnit.

I left the hospital with little to report. I had baked the nurses some Almond and Raspberry slices, a recipe that contained pastry. I’d never made my own pastry before and fancied a challenge. Friday morning I did my first batch to test on my family and friends and they seemed to go down very well. Feeling confident that I was a natural – Pasty Dan the Pastry Man – I returned to the kitchen that evening to make another batch for the nurses. It went well, almost too well. As I handed them over to the nurses I said something attention-seeking and pathetic like “it’s my first time making pastry so approach with caution”. There was veiled confidence in the whole thing and I knew they looked good. Low and behold – I got ABSOLUTELY NO COMMENTS ON THEM. Of course, that’s fine. I bake for the nurses because they genuinely deserve it for being amazing people who dedicate themselves to a very tough and emotionally volatile job… but I’d be lying if I said I also liked the comments on how nice the baking was and how flattered they all are. As I left, one nurse said “I can’t wait to try one during my lunch break”. That’s what it was, they’re all waiting for lunch to eat them. I slept easier after convincing myself that was true. I’d tried them, I knew they were good. My dad had eaten nearly all of them after about an hour of them being baked, but that isn’t always a reliable test of how good something is to eat. More how easy it is to eat at that exact moment in time. It passed that test with flying colours.

The rest of the weekend was very chilled. For once, the sun came out to play on Sunday, so myself and the family had a BBQ and lay around in the garden. It was very nice. I basically spent the entire day sitting outside on the swinging chair and relaxing. Going through chemotherapy is much easier now that the weather is a bit warmer. It was quite miserable in November, constantly getting pins and needles in my hands and face and constantly trying to avoid going outside. If you want my advice, try not to get diagnosed in winter. A summer diagnosis has far more to offer the individual.

Lucy in the Sun on Sunday

It was Monday when I started getting a little suspicious of my body. It is quite normal for me to get cold-like symptoms after treatment for a few days. My nose usually runs quite a bit and my throat sounds hoarse, but I was actually coughing quite a bit which is more unusual. After digging around the house for a Covid test and not finding one, I gave up and decided that the UK Government clearly don’t want me to determine whether I am sick or not, seeing as they are charging for tests now. My dad had other ideas and immediately went out, spending about £70 on Covid tests. We then found one laying around the house anyway which confirmed my fate – it was to be a covidy, cancery, chemotherapy-y kinda week.

So far, I’ve just felt more tired than usual, which is saying something because I already do a good job at being tired this early in my chemotherapy cycle. I’ve slept most of the day away today. The blog is providing a nice distraction in the periods I manage to stay awake long enough to write something. Who knows what the standard of writing is like in this post, though, as I’ve mostly been floating through it with a mixture of geniality and unqualified wonder at whether any of it is interesting. The cough isn’t too prominent for me – it just randomly pops up every so often, politely reminding me that I do, in fact, have covid. I guess both covid and cancer are attention seekers in that respect; sometimes you forget you have them, then some side effect rears its ugly head and demands your acknowledgement. “Yes covid well done, you did make me cough,” or “Yes cancer well done, you did make me wake up at 4am feeling pain in my digestive system. You’re so smart. Now go back to sleep.”

Next on my list of frustrations for the day is my delightful employer who has randomly emailed me out of the blue, telling me that my Statutory Sick Pay is coming to an end. At least they’re consistent in their hands-off approach. The email simply read “Please see your attached SSP1 form,” which I then opened and saw that they will no longer be paying me sick pay from April 23rd 2022. Quite incredible really but I’m learning to not expect anything more than the absolute minimum from them. I’d like to think they had some form of cheatsheet for what this means and what could possibly come next for me but, again, that would be inconsistent with their general approach of “you all die alone anyway, figure it out for yourself.” Cool. I guess I better get my financial hat back on and figure out what the hell I can do next then, in-between sleeping and feeling ill from the chemotherapy of course. Never a dull moment!

Banality, A Bitter Pill to Swallow

I find myself trying to look at the current situation I am in from different angles. A portion of this is because it makes good content for the blog, but it is mainly because it is a good technique for gaining some perspective on the situation. The topic of cancer can become banal rather quickly, and regular readers of this blog may feel that the same content does get regurgitated to an extent. The fact is that dealing with cancer becomes somewhat banal, and leads to a lifestyle that reflects this reality. I try to mix the content of the blog up by dealing with specific events, like what happens during the different chemotherapy cycles, but there is only so much variation to be expected from it. I assume that no one is reading The Chemotherapy Diaries series and expecting killer demons to appear in the narrative. If they are, they’re going to be waiting a while and left feeling rather frustrated; I’ll consider it for chemotherapy session #666, but I’m hoping it won’t take this many sessions to kill my tumour.

Running with The Chemotherapy Diaries example, these posts consist of me attending treatment, spending a few days assessing how awful I feel, watching the cycle unravel in front of me, for better or for worse, and then preparing myself for the next one. This routine has become my life since November. It is the stories found within these constraints that I hope make the content more interesting and provide variation. Unlucky for me, but lucky for the series, chemotherapy does throw in some curveballs, and they help to keep it interesting. It doesn’t mean that things aren’t mostly predictable, though. I’m under no illusion that every post contains groundbreaking new content, unexplored themes or novel information about cancer. Fighting cancer is mostly a waiting game for the patient. I want to talk about this banality today, as it has been on my mind since the weekend.

I’m using the word ‘banal’ in regards to both the content of the blog, as well as the content of life more generally at the minute. Originality is a futile concept from the perspective of a cancer blog anyway – there are many of them around and the things I talk about are not unique. I hope that my writing style provides uniqueness to an extent, but I have read plenty of other cancer blogs that have their own unique tone and style. It is like claiming that every podcast on history is unique because the presenter has a different accent.

The concept of ‘originality’ in terms of life is more tenuous. When I state that life on cancer treatment becomes banal, I mean that you lose a lot of your ability to do novel things. You are constrained to a treatment schedule, as well as feeling the physical effects of the treatment on your body. Motivation to travel, even to close destinations, diminishes greatly if you can barely walk for 5 minutes without feeling sick. There is a small window in the cycle where you feel well enough to do more, but this tends to be towards the end of it, which is also where most of your pre-cycle appointments are scheduled. That means you cannot easily make plans during this part of the treatment, so your reward is usually that you don’t feel as terrible for a few days before you’re back at the hospital and doing it all again. Even simple things like eating have changed forever. Due to the type of cancer I have, I must take tablets whenever I eat. In my old life, I might see a food stall in a park and decide to try it. These days, I see a food stall in the park, realise I don’t have my pills with me and feel a renewed bout of anger towards the situation.

On Saturday, I walked into my bedroom to find my mum consoling my fiancee, Anna. She was upset because she felt that everyone around us was making plans and doing things, whilst we exist in a strange form of limbo. It is true. We have lost a certain amount of autonomy over our lives, especially me. We had made plans to go to Dorset to visit my fiancee’s family, followed by London to go back to our flat a few weeks ago. Of course, something went wrong in the chemotherapy cycle and messed up the plans. The message was clear – don’t get excited about things and, if possible, don’t even plan them in the first place, to ensure you can’t get excited about things. The cycle is king; everything else falls in line or falls off. I can’t exactly decide that I’m not going to chemotherapy this week because I would rather visit friends in London. Of course, I actually can do this, and the hospital would fully support me – they’ve made that abundantly clear. “If you ever need a break or you feel you’re struggling, just let us know and we’ll adjust the schedule,” that’s what the team said to me, and I felt extremely grateful when they did. Why would I do that, though? It would just delay the inevitable – sitting in that chair at the hospital for 6 hours, hooked up to the machine and feeling the colour drain from my face as the poison hits my system.

I’ve indulged in ultra-marathons during torrential rain – I pride myself on digging deep and doing things that feel hard. Embracing the struggle permits the downtime in normal life, but the downtime isn’t that rewarding with chemotherapy. You don’t feel proud of yourself as you fight through a haze of lethargy, sickness and diarrhoea, you just feel happy to go to sleep each night knowing you’re one day closer to finishing. Choosing to delay a cycle will just delay that end date of chemotherapy. The ultimate reward is being cured, but you don’t know if you’re going to get there. “Once you’re cured, you can have all of the fun you like”, you say to yourself, knowing that you don’t fully believe that you’re going to be cured, but also knowing that it is not very helpful to assume you’ll die either. Staying cured is even more out of your hands, assuming your idea of a good time isn’t swimming in a lake in Chernobyl whilst smoking cigarettes and eating red meat; you’re in trouble if it is, dear dark tourist.

Sunday was my mum’s birthday. All but one of the family made it back for a meal to celebrate. We had a lovely day and it was nice to get out and do something with family and friends. Life is not like this the majority of the time anymore. My old life was cadenced by plans and events – going to friends for dinner that weekend, working in the office 3 days that week, jetting off to that country in June. The gaps fill themselves without you even realising. Potential lingers in every thought – “maybe I’ll get a new job and leave London,” you think after a tough day at the office. Even if you don’t act on those thoughts, you have them and they aren’t preposterous. Planning for the future is preposterous once you’re getting treatment for cancer, especially one that is commonly put at the top of the ‘Least Survivable Cancers’ category. It doesn’t fill me with hope for my life, but there’s a sadistic satisfaction in topping a table. At least I’m winning something.

As you can tell, my bitterness is increasing. I’ve found myself quietly resenting the world around me more. Friends are starting to go on holiday, former colleagues are getting promotions or moving on to new opportunities and people are making bold decisions about their future. A simple message from a friend into a WhatsApp group asking if anyone is up for attending that festival in a few weeks is a reminder to me that life continues as normal for most people. I’m happy it does; this isn’t meant to be the start of my origin story, wreaking revenge on the world for daring to get on with their lives whilst I am struck down by cancer.

I’m allowed to feel a bit bitter though, right? I’m trying to muster up the courage to dare to claim that I might be alive in 5 years. That’s the new standard for me. Whatever I’m doing then is almost irrelevant so long as I am still living and breathing. Apart from it isn’t irrelevant, is it? I’m still a human with ambitions, desires and hopes for my future. I frequently worry that this ‘downtime’ is ruining my career, somehow making me less attractive to employers because I succumbed to cancer and the brutal means of treating it – the months of chemotherapy, the major operation and whatever else it threw at me. “Doreen worked all through her chemotherapy,” I imagine the two people reviewing my CV saying to each other, “this guy just wrote a blog for 12 months”.

Sometimes I worry I’m using cancer as an excuse for my own shortcomings… maybe I should be working full time and not using this as an excuse to salvage my time; if I’m thinking that and I know how hard things have been, what must others think? These types of thoughts clash with the revelation that these might be my last years alive – do I want to spend them working at a job or indulging myself in a blog all about myself and my selfless struggle? And with regards to the blog, is there less of my self left for family and friends to enjoy now that I choose to put everything in a medium that is perfectly consumable by anyone who stumbles across the hashtag #Cancer on Twitter? Most of my family only found out I was in A&E a few days ago because I posted a blog about it. Is that really acceptable?

The struggle is complex but the subject’s life is anything but. Occasional dinners out, seeing friends when you have the energy and writing a blog. Most of the time, these things are enough. Today is just not one of those days. I guess I’ll eat chips for lunch, that’ll cheer me up; maybe a friend will even join me. I’ve already written a blog post today.

Illegitimi Non Carborundum

The Chemotherapy Diaries

Another treatment day rolls around… I’m not used to having to do things on Monday mornings anymore, so it’s been an anxiety-filled morning. My treatment day is usually Saturday but, because of the last-minute change of treatment after I failed the platelets test last week, they couldn’t fit me in on the weekend. That meant it was a Monday morning job for me. I make the platelets test sound like a qualifying round for a sport. Your platelet count is a key thing the doctors check in your blood tests before treatment. If they are below 75, it is a sign that your body is still working off the chemotherapy. Mine was at 72, so I was just below qualification the permissible level to undergo treatment.

I assumed traffic would be terrible so we set off at 7:45 for a 9:00 appointment. We usually leave 45 minutes before the appointment time, for reference. It appears we benefitted from the working from home revolution as there was very little traffic. The majority of people seem to have swindled Monday as a concrete working from home day. I can’t blame them. We ended up getting to the hospital 30 minutes early. Very punctual, but very annoying. 30 minutes less in bed. Woe is me.

Not only was it Monday morning, but I was feeling extra tired. Lucy decided that she would get up at 4am last night and start whining by the bedroom door. The notion that she may have needed the toilet did occur to me, but I was desperate to sleep more and not entertain it. She had the last laugh, as I heard her little feet tapping around the room a few minutes later and could smell something rather unpleasant. “Why didn’t I just take her outside,” I said to myself as I searched the room for the source of the smell. Being a small dog, Lucy’s ‘presents’ can be hard to find. Eventually, I found them behind the armchair in the corner of the bedroom. Thank you very much, Lucy. Four whole presents and it isn’t even my birthday…

This, in turn, meant I had to wake my mum up to help me clean up and wash Lucy. Being on chemotherapy, the internet advises that you regularly clean dogs if you are handling them and stay away from cleaning up their mess. The reason for this is that you are very susceptible to disease and infection when on chemotherapy. A Dog’s excrement and urine are filled to the brim with dangerous stuff, apparently (not a vet, or a medical professional; this is very much in layman terms). You really do have to love them to want them, folks. They’re not just for Christmas (or chemo). Anna is away all week in London so I’m heavily relying on my mommy again for these tasks – she’s a saint.

I struggled to get back to sleep after the incident. It was the typical scenario – laying awake in bed, knowing that you really need to sleep, and getting absolutely none as a result. My mum had a similar problem, she informed me in the morning. Lucy had the same problem too, but she can just sleep all the time and do nothing because she’s a dog. She poos constantly in the house, is a threat to my entire being and robs me of my sleep, but I still love her. For now.

Having had an extra week off for two cycles in a row, I actually was a bit nervous about treatment today. Not nervous meaning I was actually worried about the treatment, nervous because I felt like I was forgetting how to do the treatment. It’s stupid really. All I do is show up, sit down, get stabbed in the chest, then try and not feel too awful until I’m allowed to leave. There’s nothing to it really. I feel nervous about the needle going into my chest again, how shit I’ll feel during bag 2, and that the nurses won’t give me compliments about my cake. Well, the needle in my chest was fine, bag 2 was shit but it’s always shit and the nurses COULDN’T STOP TELLING ME THAT MY CAKE WAS AMAZING. Boom. Two out of Three ain’t bad. Take that nerves, you irrational, irritating irritators. I hate you bag 2, you are good for absolutely nothing (other than potentially saving my life and killing cancer).

The way that bag 2 makes me feel has actually evolved. I seem to be slightly better at handling it based on the amount of nausea I get now (or don’t get) during its delivery. That negative aspect of it has definitely declined in the past 2 sessions. It used to be crippling and I would have to sit with my eyes closed and head between my legs. I’d have a steady flow of nurses approaching me and asking me if I’m Ok, telling me to have the injection. “I’m fine thanks, I don’t need the injection,” I’d say, eyes still closed, head still framed by my knees. “Daniel…” they would start, indicating that I was in trouble, “just have the injection. It’ll make you feel better. You only have to stay an extra hour in the hospital. We aren’t that bad are we?”. This is what happens when an immovable object meets an unstoppable force. “I’m good, it’ll go in an hour or so,” I’d say, trying to sound as confident as possible, knowing I was mostly lying through my teeth and not moving my head from its brace position.

Nowadays, though, bag 2 just makes me sweat a lot, gives me a runny nose and leaves an awful metallic taste in my mouth during treatment. The nurse told me that the metallic taste is actually from bag 1, but it only ever comes on during bag 2 so I refuse to believe it. Bag 2 is responsible for all of the evil in the world, bag 1 is just an innocent bystander.

During bag 2, I overheard another patient asking if they could have some anti-sickness tablets. She had told the nurses that she didn’t need any more at the start of her treatment because she had a large stash at home; anyone who has been diagnosed with cancer will know that you build up your own little pharmacy over the course of treatment, so you start to decline the drugs after a while. The trouble was, her treatment had made her feel sick straight away, something which didn’t usually happen, she said. I learned all of this by being nosy and eavesdropping on their conversation.

The nurse told her that she would need to get the pharmacy to prescribe them and that there was a big wait – approximately 3 hours. Hearing this, and knowing that I had been given a new box of anti-sickness just 20 minutes before, I interjected. “I’ve got loads of anti-sickness if you need some,” before turning to the nurse, “I assume everyone gets prescribed the same pills for it, right?” The nurse said yes, then quickly walked away whilst saying “I’m not allowed to witness this happening!” She turned and winked at me, indicating that she wasn’t too mad about the situation. I gave the woman a strip of pills and she wished me well with my treatment. Hopefully, I purchased myself some good karma, although my intentions were completely selfless, of course.

Today contained another sobering moment too. You get used to these when you regularly spend time in a hospital, especially one specialising in cancer. I’ve mentioned before seeing a young boy with leukemia sitting in the M&S cafe with his dad, and another one where I witnessed a woman ringing a bell indicating she was cancer-free. These two examples demonstrate the different ends of the scale of experience – from negative to positive. Today, it was towards the negative end of the scale.

A man who was sitting next to me was just starting treatment for the first time. From what I could gather, his diagnosis was bleak and the treatment was palliative. He didn’t seem very old at all, I’d guess about late 30s, early 40s. I heard him say various things, about how his mum is struggling to deal with his diagnosis and how he doesn’t have anyone to look after him at home. He sat with his eyes closed as the drugs pumped around his body. I wish I could write about how I said some inspiring words to him, or simply offered him my best wishes. None of it felt appropriate. Everything was too personal and I felt bad for even overhearing the things I did.

It served as yet another reminder of all the things I have to be grateful for. My treatment is still aiming to cure, it isn’t looking to make my time ‘more comfortable’. I also have an amazing set of family and friends around me, as well as my fiancee. There’s so much to be thankful for in my situation; I try my best to always remind myself of that. These situations make you realise it more than ever.

The rest of the treatment actually went Ok. All of the nurses were lovely as ever and made the whole experience infinitely better than it should be. After about 4.5 hours of being hooked up to the pump, I was packing my things up and leaving with the baby bottle (of chemotherapy) attached to my port. My mum wasn’t going to arrive for about 20 minutes so I found a table in the waiting area and watched patiently out of the window at the drop off point.

As I waited for my mum to pick me up, I saw the man who had been next to me in the chemotherapy ward walk outside and light up a cigarette. He was pacing, staring at the ground. I just sat watching him and wondering what was going through his head. I wondered how he could smoke after chemotherapy – he had seemed quite distressed on the ward, I guess that emotion making him want a cigarette was more powerful than the sickness of the drugs. Maybe the cigarette even relieved some of that tension for him. It was hard to blame him, especially if he’s addicted. His body was probably crying out for something normal, maybe even something destructive.

The novel I’m currently reading, Don’t Point That Thing At Me, reminded me of the mock-Latin phrase ‘Illegitimi non carborundum’, often translated as ‘Don’t let the bastards grind you down’, despite not actually meaning this in Latin. The source of the Latin-English pun has been attributed to the British army in World War 2, and I’ve always loved it for its very British-style humour. It manages to perfectly symbolise both hope and cynicism at the same time somehow. I like to think of it when things feel hard. As I watched this man pacing and smoking his cigarette, I said it to myself in my mind. I wished there was a way I could communicate it to him which would adequately get across the good sentiment, but there wasn’t. He’s been in my thoughts for the rest of the day.

Unfortunately, my state descended a bit as the day wore on. Although the treatment went well on the chemotherapy ward, it started to deteriorate in the waiting room. I got diarrhea and started feeling really nauseous. Sitting in a tiny public bathroom in the hospital, I was starting to feel horrible. The car ride home was a struggle. Every sharp turn, speedbump and roundabout made me want to throw up. My puppy Lucy was on my lap and her body felt hot, which made me feel extremely uncomfortable. I’ve spoken on here about how I’ve always had a weird phobia of feeling too warm. Sitting and sweating is my idea of hell, and it is emphasised by other things being hot. Sometimes I even hate it when people touch me if they feel too warm because it makes me feel weird. There’s a strange thing I have where in certain moods I want my food to cool down before I eat it too, not because it’ll burn my mouth but because it makes me feel uncomfortable. I don’t know what it is, and I attribute some of my obsession with exercise to it. Keeping myself very fit means my resting HR is lower and I sweat less; that’s how I feel anyway, I don’t know how valid it is in reality. Lucy’s hot body laying on my lap was making me feel worse, but I persevered. She’s too cute to disturb.

I got home at about 14:30 and got straight in bed, which is where I remain now. I’ve been in and out of sleep all day. Things still feel positive. I’ve had much worse first days in a treatment cycle, but I’m back to walking the hard miles. Having that extra week in the last two cycles has been a blessing and a curse, really. It’s great to have that third week off, feeling better than ever and enjoying life more than I’ve been able to in a long time. The mentality shift when you are back at treatment is tough, though. It feels like the time off makes you less prepared to deal with the realities of the current situation. I fight on, though. Cycle 9 has begun and I only have 3 more to do before the next scan. After that, I finally find out if I can have the surgery. If I can, it will probably be followed by a day of pure euphoria, followed by the realisation that I am going to be having a major operation and all the dread and anxiety that brings. If I can’t, it’ll be adjusting to the next thing that the oncology team throw at me and trying to stay positive about things.

Illegitimi non carborundum

Dear Cancer

This was written for a competition I saw on Twitter. The brief was simply to write a letter to cancer. I thought I’d do it as it sounded like an exciting concept and a fresh take on a subject that I have obviously tackled to death in this blog. Writing in a letter format was a bit of a struggle for me, and it felt pretty jarring with my natural writing style. I also wasn’t sure how to address the ‘cancer’ as a subject and struggled with the best way to approach this. That also made it a nice challenge, though. I’m reasonably happy with the end result, I think. It was nice to just try something new. I’ve also been looking for inspiration in my writing, and these sorts of competitions add a pinch of excitement. Upon entering, I didn’t see any conditions that mean I cannot share it on my own blog, so hopefully, it isn’t a problem. I can always delete the post if I need to and claim ignorance.


Dear cancer,

In November 2021, I was diagnosed with you after five weeks of hospital appointments, scans, and blood tests. I was 28 years old. I’m 29 now and eight cycles into chemotherapy, with four more to go before the next progress scan.

I’ve learnt to facetiously refer to you as ‘The ‘C-Word’ because of how people react to your presence. Some people tune out as I talk about you, probably choosing an ‘ignorance is bliss’ approach to the topic and assuming it’ll never happen to them. Others can’t bear to face the reality of it. “You’re young; you’ll survive.” It can almost feel callous when people say words to that effect, but I know that isn’t their intent. The fact is that you are scary. You’re the diagnosis that no one wants to hear, the one that everyone fears – the great equaliser. Every time I see a headline that a celebrity has died at an unusually low age, I reluctantly scan the article. Your name is commonly there. Sometimes the word ‘pancreatic’ proceeds, and my stomach sinks even more.

Many people, medical professionals mainly, express how unlucky I am to be dealing with pancreatic cancer at my age. Statistically, I am very unfortunate. I have heard several figures quoted as the average age of someone diagnosed with my ailment, all of them over 70. I’m a touch younger than that.

The week after I was diagnosed, I purchased a lottery ticket. I’m not a superstitious person usually, but I couldn’t help myself. I was confident I’d win something. How could I get pancreatic cancer at 28 and NOT win a simple lottery? It was easy compared to what I’d managed to achieve with you. The day came; I checked the Lottery app to see if I had won. Not one number. You have my number, though, and I’m left dealing with the consequences.

At first, that consisted of much existentialism. Immediately after my diagnosis, I spent three days in the hospital. Sitting in the bed as I waited for a procedure that afternoon, I thought about how long I’d be alive before I finally succumbed to you. Maybe three years. Maybe one. Perhaps I’d be cured; no, that last one couldn’t possibly happen. It’s undoubtedly a matter of time now. Better face the reality of the situation than delude myself with hope, a dangerous thing.

The ‘doom’ phase lasted a few weeks, sparked by the leaflets, and fuelled by some pessimistic doctors. “In a small number of cases, chemotherapy will reduce the size of the tumour,” I read in a leaflet titled ‘Pancreatic Cancer and Diet’; I thought this would be the least risky leaflet to read but even this contained harrowing information. The doctor had told me that I really needed chemotherapy to work if I was going to survive. I’m currently classed as inoperable because the tumour has spread to a major artery. I not only need chemotherapy to shrink my tumour but also to shrink it away from the artery, something which is down to potluck, apparently. Without the artery being healthy, I can’t have the operation. Without the operation, I can’t get rid of the cancer. Upon reading the sentence, I sat crying in my hospital gown and wishing I could just opt out of the whole thing and die. At the lowest stage, I thought about a train crossing I used to cycle over where the locomotives came flying through at speeds of up to 180kmph. That’s where I’d do it.

I’m happy to say that you’ve given me far more to be grateful for over time than to loathe you for. Reading has always been a big hobby, and I’ve always wanted to try writing, but I didn’t think I had anything interesting to say. After starting chemotherapy, I created my blog called Ebb and Flow. It doesn’t get a massive amount of views, but it is far more than I thought it would get when I started it. People comment on the quality of the writing, which makes me feel more accomplished than anything I’ve achieved in my job as an IT consultant. I participated in the Run 40 in Feb campaign for Pancreatic Cancer UK, raising over £7,000 for them; my campaign was in the top 1% of fundraisers on Just Giving in February. I’ve also asked my girlfriend to marry me and have spent more time with my parents than I ever thought I would again; I had to move back in with them as I couldn’t afford to live in London anymore whilst undergoing treatment. Every cloud has a silver lining, and I’ve found my fair share of silver linings over time.

None of these achievements mean as much as this final one, though… I’ve proven that I can fight you, cancer. I remember seeing the adverts for Cancer Research UK before I was diagnosed and having so much admiration for those fighting against you. “I could never do that,” I said to myself. I really believed it – I couldn’t even have a blood test without feeling like I would pass out. At the three month scan, I found out that the chemotherapy was proving effective and that we had almost halved you. The tissue around the artery is looking healthier, too. There’s still a long way to go before I can say that I am cured. The surgeons need to approve the surgery, which may take other methods such as Radiotherapy and Nanoknife to achieve. Then I need that surgery to be successful. After that, I go into the stressful stage of remission, constantly fearing that at the next progress scan, I find out you have come back with a vengeance, lurking like a shadow, dormant until detected.

It’s a long road, but it’s the only way out of the woods. I’m tackling it with my head held high, surrounded by loved ones and holding onto whatever hope I can. The worst that can happen is you win, and I die, but at least I’ll know I gave it a good go and found plenty of happiness doing so.