Race Day: Anna & Sophie vs 13.1 Miles

Sporting Their Christie Tops!

The day that Anna has been dreading had arrived. Race Day. Sunday, May 22nd – Manchester. The stage was set for her first ever half marathon. Sleepless nights, despairing days. “I hate running,” she would say to herself as she laced up her running shoes for another practice run. Her only motivation to continue doing them was the knowledge that she was raising money for an amazing cause – The Christie, where I receive my cancer treatment. The primary source of solace for her comes in the form of a vow… a vow to never run again once she crosses that finish line. Half marathon achieved; Anna Running Corp dismantled. All aspirations achieved and no interest in drawing up any news ones within the confines of awful running, the worst activity known to man (according to Anna).

With a start time of 8:40, it was an early wakeup. The alarm wailed at 6:00. Anna was up straight away, but I was not so eager. Neither was Lucy. The two of us refused to rise to Anna’s ‘I want to be on time’ game. We performed a dirty protest… the sleeping kind, we aren’t animals. Well, Lucy is, but you get it. By the time we got out of bed, it was 6:30. We had all agreed to leave at 6:45 the evening before. Anna wasn’t impressed.

We left at around 7:00 in the end. The sat-nav kindly informed us that we would be getting there at 7:53. That meant that Anna had plenty of time to meet her partner-in-crime Sophie (who is also Maid of Honour at our wedding) and make their way to the start. Any tension was dispelled – things were going to work out. We decided to bring Lucy the puppy along to see the city. After establishing herself as a beach girl in Whitby, we knew we had a difficult task convincing her that city life is worthy of consideration. It is a mountain that we must climb with her, though, as Anna and I usually live in London in normal life. This cancer malarky led us to move back in with my parents, in the much-smaller town that I grew up in. Lucy was then purchased for me by my lovely family as a surprise gift to help support me through the awful journey. She is now 8 months old and very much likes having a garden to run around in and fields to go walking in. It’s a huge problem as we won’t have either of those things once we’re in London. Also, due to her tiny size, she’s a little scared of cars. There are a lot of cars in London. Lucy won’t approve of any of it if we don’t start trying to convince her now.

Warming Up Against a Bar Window – Totally Normal

We arrived at roughly the time the sat-nav told us we would. Anna jumped out of the car and went to meet Sophie. My mum, dad and I found a parking lot and didn’t question its credentials. There were white lines, other cars and a machine to pay – it seemed legitimate as they come. Unfortunately, it wasn’t legitimate. Or I am assuming it isn’t legitimate. My dad returned from the parking machine and informed us that it cost just over 25 of his well-earnt-British pounds to leave his car on this piece of land for half a day. Now, I wish I could say there is nothing remarkable about this car park which would make it cost such a price but there actually are plenty of things that are remarkable about it. Here are some of the things that the car park did NOT offer for that price, making it remarkable – A barrier, a surface free of crater-sized holes or EVEN CCTV cameras (other than the cameras making sure those who entered and left had paid). Perhaps the fact that Britain has the second most cameras per person in the world, losing the title only to China, makes those who run it think that they don’t need to bother buying their own (stats supplied by random people in the pub and not verified; also the ‘China’ part of that fact may be British government propaganda to make us look better). Or perhaps, the company that own and manage this car park are just a bunch of money-grabbing twats. They can’t even pay someone to clean up the excessive amount of broken glass which was strewn around the place like spilt glitter on a carpet. Remarkably rubbish, but we paid for it. The joke is most definitely on us.

To be fair to the car park company, one of these problems actually seems endemic in the entire city of Manchester – broken glass. I studied for my undergrad in Manchester and lived in the centre of the city in my final year. It has always been the nearest city to my parent’s house, so when I was younger it would be where we’d go to go shopping, see bands live, etc. What I’m getting at is that I’ve spent a lot of time there in my life. Perhaps my memory is getting worse, but I do not remember the city having this much of a problem with broken glass when I frequented its streets. It is EVERYWHERE. I’m wondering if the local council have started trying to charge households for recycling glass or something. There must be some incentive driving people into yeeting their every bottle on a public walkway as opposed to putting it in a bin. It doesn’t even have to be a recycling bin. In fact, you don’t even have to put it in a bin, just don’t actively smash it on a public walkway, turning it into a trap for any innocent dog, child or adult that happens to be strolling down the road, not realising it is punctuated by jagged fragments. As me and my parents made our way to the spectating spot that we had picked out on a map, I feared for Lucy’s paws as we navigated the walkway – more glass fragments than concrete, and decorated with half-eaten food and rubbish. Lucy was a huge fan of the half-eaten food and rubbish, and my mum had to wrestle a couple of chicken bones out of her mouth over the day. Occassionally she’d pick up a bit of a polystyrene case which was left on the floor and proudly run along like she’d won the lottery. Good job shes cute because she’s also absolutely disgusting.

Mum Offering a Supporting Hand – Just Before Mile 2

We saw Anna and Sophie twice at our little viewing point – once just before mile 2 and again around mile 7. They were running side-by-side and were smiling ear-to-ear both times. They were enjoying it, no matter what they claim to the contrary. Both were sporting The Christie shirts, and Sophie even had a temporary tattoo of their logo on her arm. I’m hoping she will consider making it permanent in future but I suspect she won’t. She isn’t that committed to the cause. Despite it being quite overcast as they ran, the weather was proving near-perfect for running, remaining largely warm but with a cool breeze. The two stuck together all the way until the end, and the next time we saw them was on the run into the finish, with approximately 200 meters left to go. We cheered at them as we saw them emerging around the corner, and could see the smiles on their faces widen as they spotted the finish line in front of them. Music was banging, people were cheering and the voice of a woman announcing finishers was ringing out. They had done it. We made our way through the busy crowd to meet them.

Sophie’s Boyfriend Scott and Their Dog Narla – Surprise Support From Below a Bridge

Anna’s aunt, uncle and cousin were also waiting at the finish. Maureen, Anna’s aunt, also received treatment at The Christie for cancer. It was really lovely to talk to her about what an amazing place it is. There’s so much benefit in talking to someone who has beaten cancer and who understands the difficulty of going through chemotherapy. I have an incredible amount of respect for anyone who has withstood all of the struggles that come with a cancer diagnosis. The fact that I know they must be a strong person to be able to do such a thing then allows me to feel good about what I am doing. In turn, it makes me acknowledge that maybe, just maybe, I must be quite a strong person too. I haven’t survived, but I’ve made it through twelve rounds of chemotherapy. There’s a lot more coming my way so I need to try and celebrate every win. Finishing twelve rounds of Folfirinox is a significant win, no matter what the results of the scan are on Thursday. Celebrate it.

Anna and Sophie got to celebrate a significant win today too – they finished their first (and last, so Anna claims) half marathon. They also get to celebrate raising money for an incredible cause. Anna in particular has two people close to her who sing the praises of The Christie, and for good reason. Raising over £1,500 for them is incredible. It was great to see so many other participants running for them too. The hospital truly deserves it for everything it does. I’m so grateful to Anna and Sophie for choosing to raise money for them.

13.1 Miles Later

Being around all that running got me riled up and desperate to run myself. I’ve not been getting out of the house much these past few days. My body has been fighting back against the infection(s) and I’ve felt incredibly tired. After spending the day walking around Manchester, watching large swathes of people pushing themselves physically, I decided to try and get out running again once I got home. It’s funny when you get motivated to do something in this way – you watch people do something and convince yourself it’ll be easy if you just get out and do it too. It rarely is.

Between the age of about 8 and 13, I used to skateboard. If you have been reading this blog for a while, you may have remembered that I used to play the guitar a lot too at this age… Yes, Avril Lavigne must have been inspired by me to write her hit song Sk8er Boi. You’re welcome, Avril. I was never very good at skateboarding, unlike guitar, but over time I managed to learn a few tricks. Enough to go out with my friends and have fun without totally embarrassing myself. Me and my friends used to sit and watch professional skate videos together, where professionals would do mind-bending things on a skateboard and make it look incredibly easy. That is what is so impressive about people who are that proficient at a skill – you can watch them do it and be fooled into thinking it is easy, but you don’t appreciate how many different things the individual is accounting for to manipulate something in such a way. Skateboarding is one of the best examples of this I can think of. We’d get ourselves amped up watching these people throw themselves down huge sets of stairs, doing tricks that I couldn’t even do when slowly rolling along on a pavement. You’d then go outside, feeling incredibly motivated and ready to do whatever it takes to land that damn trick. You step on your skateboard, give yourself a small push so you’re slowly rolling, pop the board and the same thing that always happens happened – you’d enthusiastically gesticulate with your legs in mid-air whilst the board spins a bit, falls, and your feet land clumsily back to the ground either side of the piece of wood. You remember that it just isn’t that easy.

I felt that familiar feeling as I set off running in the early-afternoon heat. Witnessing so many people running a half marathon gave me a false sense of my current abilities as a runner. I headed out thinking that I’m only doing 5 – it’ll be easy! I used to routinely run a lot further than this and wouldn’t struggle at all. Of course, the run was horrible and my body just wasn’t playing ball; I knew it within minutes of setting off. My heart rate was rocketing despite my lungs feeling fine. Your body just isn’t the same on chemotherapy, and the infections a few days prior probably weren’t helping.

Things aren’t normal for me at the minute from an exercise point of view; they may never be again, with me needing a major operation, more chemotherapy, and maybe other procedures that I don’t know about yet. Who knows what I’ll be like in the end. I’m used to loving going running and being quite good at it. I’m not used to having to walk several times whilst running 5K – I’m not used to having to walk at all when running. I am used to pushing myself, though, and despite feeling absolutely crap, I forced myself to keep going for an extra kilometre. It isn’t a lot, but it’s something. Hopefully I’ll be able to enter a half marathon and push myself like that again soon. Maybe even a marathon, but I’m sure that is a while away from where I am right now.

As I ran along a familiar country path next to an overgrown patch of land, I remembered my mum telling me that the only time she has seen a snake in this country was in this area. She said it was dead with some of its body poking out onto the path, I believe. Running along, I looked into the overgrown wilderness and wondered how many snakes may be in there. That overgrown mess is their entire world. Nothing else matters. Their life is hunting, resting and trying to find a mate. Repeat. Repeat. Repeat. They don’t care what is outside of this area – it is totally irrelevant to them. Every day is a fight for survival. One of those days they don’t come out on top of that fight, and they die. I wondered if I’d ever see one as I ran along. For a second I convinced myself that there was one ahead of me. As I approached, I realised it was just a stick. Shame, maybe next time.

The Overgrown Area Next to the Path

I thought about cancer and how arduous it all is. The long spells of treatment, the constant berating of statistics and the palpable uncertainty that hangs over everything in your life. I almost felt jealous of the snakes in their little wilderness. Then I wondered if we are in our own little wilderness and some higher power is looking over us, pitying how simple we are with our cancer, climate change and petty wars. Maybe they’re juggling much bigger priorities with much deadlier consequences. Suddenly I felt a bit better about the whole cancer thing. I’m still managing to run a bit, how bad can it be?

Anna and Sophie are still taking donations. If you would like to donate, their page can be found here. A big congratulations to both of them for challenging themselves and for absolutely smashing it! Can’t wait to support you both at the next one (hehehe)!

Scott and Narla Playing Where’s Wally?

Infections Ahoy: 2 Hospital Visits in 24 Hours

The Chemotherapy Diaries

Yestrerday morning, I was admitted to the hospital with a suspected infection. My temperature was 38.2. The ‘healthy’ range is about 36.1 – 37.2, I believe. If it is above 37.5, that is when the chemotherapy hotline become particularly worried by it. Who knew there could be another twist in the chemotherapy tale? It’s a good job I haven’t made any lofty claims recently about Completing Chemotherapy – that would make me look pretty stupid.

I’ve felt extremely tired these past few days, but that doesn’t raise an eyebrow in week one of the chemotherapy cycle. Randomly regaining consciousness on the sofa despite having no recollection of falling asleep is part of the first week’s rituals. Sure, I’ve been getting the usual attacks of stomach pain, digestion pain and general abdominal pain, especially during the night. Why would that be any more concerning than usual, though? You wouldn’t put a polar bear in a Tunisian zoo and then ponder over whether it is too warm. You know it’s too warm, you just want more people to visit your zoo. I actually did see a polar bear in a Tunisian zoo when I was 18. The poor thing was laying on the concrete in the scorching sun; it looked completely defeated. It was the moment I swore myself off zoos.

I got on with things as normal. Tuesday night’s sleep was broken but not too bad; in the morning I felt a little more exhausted despite sleeping for twelve hours. Still not too concerning. Wednesday I spent lounging around the house, slowly mustering the effort together to get out into the big bad world and walk Lucy the dog. Anna and I finally managed it at lunchtime. We were out for about an hour and the sun decided to join us. The rest of the day was a blur really – I can’t remember what else I did. Fell asleep more, read my book and lounged about, probably. Wednesday night was when the serious fatigue kicked in again. Not totally unusual, but I didn’t experience it like this often.

Walking Lucy – Picking Up a Gift from a Family Friend

I was struggling to stay awake on the sofa from about 21:00. Before this I was fighting the tiredness, but after 21:00 I simply couldn’t stay awake. The abdominal pain was also worsening which is unusual for the early evening. It usually only happens in the middle of the night and in the morning. I went to bed early and had a strange night, drifting in and out of sleep and feeling particularly bad. There isn’t a better way to put it really. Just bad. By the time it was morning, I had a high temperature and my skin was boiling hot. A high temperature is the clearest (and sometimes only) sign that you have an infection. Infections are extremely dangerous whilst on chemotherapy, and can be fatal if they are not dealt with quickly. Your body is busy processing the chemotherapy drugs, meaning that the load on your immune system is heightened. So, things which may be routine for your immune system in day to day life become big problems whilst on chemotherapy.

That is why your thermometer is your best friend whilst on treatment, and at first I hung out with mine regularly. As I settled into treatment, though, I started thinking I knew it all. I stopped really checking my temperature, deciding that chemotherapy was easy and that my body was an impenetrable fortress. The road to hell is paved with good intentions. I thought it was in everyone’s interests for me to not check my temperature – I save myself an entire 10 seconds every morning, no one worries about me having an infection and I don’t have to bother the staff on the chemotherapy hotline, who have older and more vulnerable patients to attend to. When I eventually conceded that I felt a little hot and Anna told me that my chest was ‘boiling’, I grabbed the thermometer. I put it under my tongue and waited for the beep. Beep – 38. Fuck. As stated earlier, anything over 37.5 is moving into abnormal. 38 is the highest I’ve ever seen my temperature go. The reality of the situation set in; I’m going to have to call the hotline in my final cycle, aren’t I?

It is amazing how quickly self-preservation kicks in when you are in these stressful situations. As I sat on hold to the hotline, I tempered my thoughts on whether what I was doing was appropriate or not. Despite reading online that a temperature of 38 on chemotherapy unequivocally requires the attention of the oncologist, and fast, I kept checking my temperature to see if it was a false reading. I got a few 37.8’s, a 37.9, a few more 38’s. All of a sudden, I got a 37.3. Phew, it’s normal again, I said to myself. Just before I managed to hang up, a woman picked up and asked for my hospital number. Damnit, they got me. She asked about my temperature and I explained that it has been a little bit all over the show. “What is the highest temperature you have recorded?” She asked. “Well, the highest is 38 but I’ve had quite a few 37.8’s…” she cut me off mid-sentence. “You need to come in, I’m reserving you a bed now. Can someone drive you and can you get here in the next hour?” I felt like a deer in the headlights. I resented the thermometer for doing this to me; that’s the last time I’m trusting you.

I knew something was wrong, though. Even now, 7 months after a cancer diagnosis, I still try to avoid doing anything which may disrupt the idea that everything is going well. Accepting that I have a high temperature and possibly an infection means that something needs to be done about those things. That something may result in more uncomfortable truths coming out about the cancer, treatment, or who knows what else. You want to curl up in a ball and wait it out instead. It’ll be fine. Probably. Unfortunately, that type of avoidant strategy won’t do you any favours in the world of your health. Putting off appointments, ignoring symptoms and pretending that you feel Ok, all just lead to bigger problems in the end. Even if it doesn’t – getting checked out will settle that voice in your head which tells you something is wrong in those quieter moments. You may have to do a few uncomfortable things in the process, but life is full of uncomfortable moments. It happened to me for over a year when I was trying to get my abdominal pain diagnosed. I never thought it would actually be cancer, no matter how many jokes I made about it being so. Those jokes seem in bad taste now, but that is clearly one way that I dealt with the uncertainty of not knowing what was causing the pain at the time.

The operator had told me to bring an overnight bag and set off straight away. I got a few things together and pulled myself out of bed. My head was spinning and it felt like someone had lit a fire inside it. I felt like a zombie as I walked, struggling to speak coherently and feeling fascinated at how the human body copes with the world. So, when you have an infection your brain heats up does it? Perfect.

Anna dropped me outside the front of the hospital. I had to go to a department I’d never been to before – Department 22. It wasn’t the ideal time for an adventure. If anything, the zombie description was only becoming more accurate as the day dragged on. Adequately stringing together sentences was becoming a unsurmountable task. As I walked the corridors of the hospital trying to follow the signs for Department 22, I felt my eyelids refusing to blink as fast as I wanted them to, and my feet dragging more than usual. It didn’t feel like I was in control of any of it. I made it to the right place and asked at a reception desk where the ward was – she told me to use the lift and go to the top floor. I turned around and walked in the completely opposite direction to the lifts. She called out to me and walked around the desk, putting her hand on my arm and saying she’d take me there. She smiled at me. Sweet pity was looking me dead in the face.

Once I reached the ward, I was taken into a private room immediately by two nurses. Both were extremely nice, as is standard at The Christie. Everyone who works there is always so lovely. One of them checked my blood pressure and temperature. My temperature was now at 38.2. My heart rate was at 201, which was far more concerning, but the nurse didn’t tell me that yet. She smiled and said, “I’ll be back in one minute, Daniel.” I smiled and said Ok. I’m sure she had noticed the vacant tone of my voice and the rolling of my eyes; I was actually feeling quite ill now. She came back with another device and put it on my finger – “Ok, good. The last device said your heart rate was 201 which would be very concerning. This one says it is 131. It’s still high but it’s much more manageable. I’m sure we’re making you extra nervous, too.” She wasn’t wrong. There was a lot of equipment in the room and I was suspicious of all of it. What are they going to do to me?

Drip Drip Drip

They put a needle into my port and extracted a few tubes of blood. The nurse then informed me that she also needed to take blood from my arm, as a means of trying to locate where the infection is. I knew this was going to end badly, but I also knew that there was no way of getting out of it. I didn’t say anything. She put the needle in my arm and I watched her pulling blood into a syringe. Now, I say I knew this was going to go badly because I absolutely hate doing blood tests at the best of times. My body does actually respond quite strangely when a larger amount of blood is taken, though, which is why I cannot donate blood. Also, they don’t usually extract blood from your vein using a syringe, and that in itself was making me feel queasy. Usually they use small plastic containers that they screw onto the end of the needle.

I’d seen that she had already taken quite a bit of blood from the port, and I was now watching her pulling it out of my arm. Couple that with the fact that my head was spinning and I was already feeling sick, and you get a recipe for disaster. At some point whilst she was taking the blood, she realised my arm had gone floppy. “Don’t pass out on me, Dan,” she said, “we’re nearly done.” The room was spinning and I was sweating profusely. Even my eyes were probably sweating. She finished, detached the syringe from the needle, pulled the needle out then lay me down on the bed. I couldn’t hear properly – like that part in a war film where the protagonist looks around in slow motion and sees all the destruction around them with an eerie buzz. My hearing was going and I had to shut my eyes, breathing heavy and focusing on staying awake. Then I came out with a rather unusual assessment of the situation – “I feel like someone has put a tin of beans over each ear.” I’m not sure where it came from but the nurse burst out laughing and said “that’s a new one”. I only realised how embarrassing it was once I was feeling better about 10 minutes later. “Where did that comment about tins of beans come from?” I said as she came back in to attach me to a drip. It needed to be addressed now that I was more conscious. What would a psychologist say about that? When my defences were down and my brain was at it’s most vulnerable, it chose to bring up cans of baked beans. Interesting. I even specified that the tins were used for beans; surely that detail would be irrelevant.

Anna’s Interpretation of the Tin Incident

Once I was feeling better, the nurse said to me “You probably think we’re vampires taking all of this blood from you!” Has she been reading the blog? Or can she read minds? Is that something that vampires can do? Now I have to watch what I say AND think around these bloodsuckers. What a disaster.

The next person to see me was the on shift GP. Now, I know I wasn’t completely with it, but I am 99% certain that this woman was an angel. She had the softest Irish accent I’ve ever heard and always looked deeply into your eyes as she spoke to you. Everything she said, she meant, and you felt it. I tried to focus on her questions, but I couldn’t help getting lost in her aura. Some people are so predisposed to just be be…nice. It can knock you back sometimes. She can’t always be like this, surely. Then I remembered that she become a doctor, arguably one of the most caring careers a person can pursue. It must be exhausting caring about every single person you come into contact with if you are a doctor, though. How on earth does she do it? Maybe I’m just drinking the kool aid and moments after I left the ward, she turned to the others and said “Hah – did you see how limp that wimp went when we took his blood? What a loser!” She definitely didn’t, but it makes me feel better to lie to myself that her angelical nature was a facade and that she was actually a horrible person. If I didn’t believe that, she’d make me want to become a better person. That takes time and effort. No thank you.

Dr. Angel listened to my chest, tapped around my back with her hands, inspected my body and asked me to breath deeply for her. She then sat next to me and chatted to me about all of the issues I’ve had throughout treatment, to try and establish any trends which could help identify the problem. I told her about the mouth ulcers. She shone a torch in my mouth to take a look. “Aw it looks so sore – you have signs of oral thrush. Have you been treated for it before?” I had, about 3 cycles prior. She said that she’d give me some tablets to help get rid of it. We then went down the dignified topic of diarrhoea. Talking about how many times you see blood in your poo in a typical cycle should be uncomfortable, especially when you’re talking to a real-life angel. Fortunately, it’s a topic which seems to come up every time you see an oncologist about anything. “My feet are constantly cold and numb,” you say to your oncologist one day. “That sounds awful, Daniel. Please rate how loose your stools are out of 10,” they reply, without a second of hesitation.

The doctor told me that I’m probably fighting some form of infection in the bowels, alongside some other issues like the oral thrush. She told me that they’d prescribe me antibiotics and send me on my way. I breathed a sigh of relief. The anti-biotics that the nurses had pushed directly into my veins had kicked in and I was feeling more like myself.

Dr. Angel told me that I needed to do an X-Ray of my chest just to make sure they can’t see anything worrying. The nurse walked in a few minutes later with a wheelchair. “C’mon – you’re going to help me get to my steps goal today.” This was only the second time I’d been wheeled through a hospital on a wheelchair. Knowing I was fully capable of walking, I kept offering to just walk, but she told me that she isn’t allowed to let me. There is something severley immasculating about being wheeled around when you don’t need to, as if you are conceding to some form of weakness that you insist does not exist. I decided to just sit back and enjoy the ride. It was like a fairground round and I was going into the staff only parts of the hospital. Exciting.

The scan only took a few minutes. I was then taken back up to the room. Dr. Angel came in a few minutes later and confirmed that the scan was clear. She actually described the X-Ray as ‘beautiful’. She’s definitely an angel – nothing else has the audacity to use that word in that context. Finally, I had the all clear to go home. I thought that was it for my temperature shannanigans for one day. Unfortunately, I was wrong.

After I got home, I showered, cleaned my teeth and got into bed. The rest of the afternoon was spent drifting in and out of sleep, sweating a lot and basking in the sunshine which was obnoxiously beeming into the bedroom through the window. My body was cold and hot at the same time. Perhaps it wasn’t the best idea to lay in direct sunlight for hours, especialy with the ginger genes that exist in my family (two of my siblings are ‘Strawberry Blonde’). The sun makes light work of my pasty skin. Anna and I had booked to go out to a local restaurant that evening with my parents. They were adamont that we should cancel, but I told them we should go. Walking a few hundred meters before sitting in a restaurant seemed like an easier task in my head; I couldn’t just stay in all night. I got some soup and ate it slowly. About two seonds into the main course arriving, I knew I’d made a mistake. I made a pitiful attempt at eating enough of it that it didn’t seem rude to the kitchen, then sat there trying not to fall asleep. Anna and I ended up leaving early because I was feeling too bad. When I got home, I lay in bed. Somehow, I was feeling even worse than earlier. After about 30 minutes of this, I reluctantly grabbed the thermometer and put it under my tongue. Please don’t be high. Beep. 39.1. Eugh.

I took my temperature over and over again, each time returning results around 39. It was even higher than earlier – surely that isn’t good. My mum, Anna and I then desperately started looking for the other thermometer. It’s broken, surely… Of course, it wasn’t broken. My eyes were actually burning and Anna said that heat was radiating off my body. I called the hotline. Once they picked up, I protested that it was probably nothing but that I wanted to double-check. As soon as I gave my temperature, the operator seemed concerned. “That’s quite a lot higher than earlier. I think you need to come in again.” It was around 21:30 now. Once I hung up, I lay idle on the bed for a while, wishing it would all just stop. It didn’t. We got in the car and set off, arriving at around 22:30.

The hospital was empty, as expected. Anna walked with me to Department 22. We went up in the lift together, before she was asked to leave the hospital. A familiar procedure started – blood pressure, heart rate, insert a line into my port. The nurse put her finger on my wrist to check my pulse. “You’re boiling sweety,” she said, before sticking the thermometer in my ear. “Wow, you’re temperature is 39.2. Let me get the oncologist quickly.” A youngish man, perhaps mid 30’s, walked into the shared ward and pulled the curtains around us. There were two other men on the ward. Both of them were sleeping. The room was punctuated by the occassional groan, and the sounds of restless sleep. Machines beeped, nurses giggled down the coridor and I sat wollowing in self-pity.

No surprises here, but the oncologist was a very nice guy. He wasn’t angel material, but he wasn’t far off. I think you just have to be an amazing person to dedicate yourself to the oncology profession. It is so brutal; the average person doesn’t want to be in the coal face of pain and misery every day. These people recognise the other side of that equation – how incredibly necessary their role is in fighting back against cancer, and how the people suffering from it are just crying out for a reassuring smile. Even when that smile is behind a mask. They make a huge difference, whether the story ends in tragedy or not.

He gave me two options. Option one: put me on antibiotics and monitor me overnight at the hospital. It was their preferred option because of my temperature, but he appreciated that it may not be mine. Option two: they take blood samples from me and confirm that they are ‘healthy’, meaning that this is just my body fighting the infection, and that there aren’t any indicators that my health is deteriorating. After explaining both, he smiled and said “you want option two, don’t you?” “Fuck yes,” I responded. It was probably a bit inapprorpiate but I think he appreciated the timing. He reitorated that I need to ring up if anything worsens and that they are only letting me go because I’d already been given a thorough inspection earlier, with anti-biotics issued. He said that he suspected my bloods would be fine, but also reitorated that they need to be clear or I’d have to stay.

The nurse came back in and took my bloods. She asked me if I wanted anything to drink. I treated myself to an apple juice and settled in, watching Youtube on my phone in between falling asleep. About an hour and a quarter later and the oncologist was back. “You’re good to go – the bloods are fine. You’re still fighting an infection so you are likely to have a high temperature for a few days, but we aren’t worried about it based on your vitals and the blood results.” I breathed a sigh of relief. Anna and my mum had been waiting in the car the entire time; Anna had spent as much time as I had at the hospital that day, without being allowed to be part of any of the action. It was probably worse for her, really.

Apple Head on the Ward, Waiting for the Blood Results

I made my way out of the deserted hospital, exchanging pleasantries with a random cleaner in one of the foyers. Part of me expected to see a cohort of blood nurses sitting in one of the offices as I walked past, downing pints of blood and cackling. They must have a private room in the back as I never saw them. It was so good to know that I’d be sleeping in my own bed. We got back at about 00:30 and all retreated to bed.

Any hope of cycle 12 being easy had been dashed. Luckily, I seem to be following a similar blueprint to a guy who has beat this bastard cancer. The incredible Nigel had to spend an evening in the hospital because of an infection when he was on the same chemotherapy as me. He is now 3 years clear of pancreatic cancer, something very few people can say, especially those who were diagnosed in their 70’s. Having one infection that gets you admitted to the hospital seems to be part of the winning formula for beating pancreatic cancer, so I’m choosing to take the positive from the situation. I actually got admitted twice, so I’m twice as likely to beat it now. Logic. Nigel’s daughter told me that he claimed the hospital’s thermometer was broken when they checked his temperature…it’s no wonder he beat this cancer with that sort of self-idealisation. How could my temperature be that high? I’m Nigel, don’t you know. I don’t get ill.

I’m hoping that the rest of the cycle is far less eventful. Hoping does little to change these situations, though. Better to just roll with the punches and see what happens, dealing with it when (and if) it does. Besides, the hospital’s thermometer was broken. I didn’t even have a temperature.

Scan Day

The Road to Recovery

Saying Bye to Lucy Puppy This Morning

The day has come again…. attending the CT scan at the end of phase one of treatment. My last scan was at the half way point after 6 chemotherapy sessions, at the end of February, and produced good results. My tumour had shrunk from 3.2cm to 2.1cm, my tumour markers had come down considerably and the tissue around the artery was looking ‘healthier’. It was positive, but I struggled to allow the news to settle in as we left the consultant’s office. Anna cried immediately. I suspended any positive feelings I had. I’m not sure if it ever sank in fully. The results were then taken for review at the MDT meeting, a cross-functional meeting including those all-important surgeons, who still determined that I wasn’t surgery ready. It felt disappointing at the time. It wasn’t disappointing, though. I haven’t spoken to anyone who has had their chemotherapy interrupted because they were surgery ready. I’m sure it happens, but if the chemotherapy is working, why not continue? It wasn’t the reasoning that the oncologist gave as he relayed the decision to me at the time, but it is the bright-eyed-bushy-tailed interpretation that I decided to translate it into. That argument for continuing with the chemotherapy could be applied ad infinitum, I guess. Perhaps I shouldn’t suggest to the oncology team that I am happy to do chemotherapy forever. They may class it as a clinical trial and keep me in a cage to observe me. “He seems a bit distracted today and he hasn’t showered in 6 days. It’s quite disgusting,” they’d say. “I understand you, you know. I’m not a rat,” I’d respond, laying in my wheel like it is a hammock. They’d give me a funny look, write something in their report and walk off together in their white coats.

I find myself starting to write this post in the CT Scan unit (Department 11) of The Christie, drinking my dye drink every 15 minutes and acting like I own the place. It’s funny how much bravado you can bring on only the second time you visit a part of the hospital. I caught myself showing off that I knew the process. The nurse took me into a private room just after I arrived to do the introductory survey. Before she got to the questions, I said “I asked the district nurse to leave my line in yesterday, so you guys don’t have to use a new one.” What a hero I am. I’m sure she’ll be telling all of her friends about me for the rest of the week. “What a forward thinking-gentleman,” I imagine her saying to the team later, out of earshot of the rest of the room. Perhaps I should tell her about my blog, too. Although, I’m sure she doesn’t want to read about cancer to unwind from her job where she stares cancer in the face all day, every day. Maybe I’ll just tell her I’m a writer; that’s a cool thing to say, right? I can even say I’m published! Ok, I’m not going to say any of this, but it’s fun to pretend. She’s probably already forgotten about me in reality, and that’s the way it should be.

The nurse asks you what flavour dye you would like after you have completed the induction questionnaire. I go for blackcurrant, but the aniseed flavour easily cuts through it. Why are 95% of oral medical consumables flavoured like aniseed? (Please Note: statistics are not accurate and have been made up by the author). You are instructed to drink two cups of the dye straight away, then have one more every 15 minutes until you are called for your scan. It works out as approximately 900ml of liquid in one hour. I made a bit of a fool of myself as she handed me my bottle and cup. “It’s just one cup every 15 minutes, isn’t it?” I only phrased it as a question to hide my confidence; showing off was my prerogative. “Yes, but you need to drink 2 cups straight away too.” Damn, Daniel – you forgot about the initial 2 cups. She’s not going to read your blog now – any cancer clout you had, you just lost.

That wasn’t the end of my over-confident adventures in department 11. A woman asked a gentleman next to me in the waiting area if she needed to take off her jewellery. He responded saying he wasn’t sure but he thought so. I then cut in, confident as an ox and ready to dish out more knowledge on the lucky souls who happened to be in the waiting room with me that day. “Yes, you take it off and then leave it in a locker around the corner. They let you do it before you go in for your scan.” This wasn’t my first rodeo. She smiled and thanked me. “No problem, I responded.” BatDan strikes again. Just an ordinary man with an extraordinary appetite for helping others.

The nurse called me about half an hour later, once all of the dye had been consumed and I was ready for the scan itself. I followed her to the next waiting room, which is situated outside of the room where the CT scan takes place. A few minutes later, she calls me into a private room to flush the line that is attached to my port, and ensure it is working. The nurses flush the line using a syringe with a saline solution inside. They attach it to the end of the line, and then push it into your bloodstream to ensure that the device is working properly. Once they have confirmed it pushes in, they use another syringe to pull out some blood. It is unusual at first, but you get used to it. The saline solution is usually cold, and you can feel it as it makes its way into your body via the port in the chest. Watching them then pull blood out of you makes you feel awfully human. All of those lessons in science really told the truth – we’re just skin, bone and organs with blood circulating around us. Who knew? I was sure I was above it all. Maybe I’m not indestructible. I mention to the nurse that I need to take off my ring, watch and bracelet. “You’re only having your chest, abdomen and thigh scanned so you will be holding your hands above your head. You can leave all of your jewellery on,” she said, to my dismay. I seem to be full of bad advice today – I need to learn to keep my mouth shut.

Fifteen minutes later, I was called into the scan room. The reason that you need a line in during the CT scan is so an additional dye can be used during the scan. I’m not sure what the difference between the two are, I just do whatever the doctors tell me like a good student. The dye that is provided intravenously carries a warning – it feels warm around your genital area as it is pushed into your body. You are usually put through the CT scanner once without the intravenous dye, then the second time you receive a warning that they are issuing the dye and you may feel an ‘unusual sensation’. What they are referring to is the feeling that you may have wet yourself, but you haven’t. It is just a strange feeling of warmth around that area. It is quite disconcerting the first time – you get used to it by the fourth (I’m showing off again, aren’t I?) I’m unsure if it happens to both men and women, actually. The whole thing is very unusual, but over very quickly.

That was it. Another progress scan completed. I met my mum and Anna in the M&S cafe in the main part of the hospital. Our number 1 cheerleaders were waiting there with them – Nigel the Pancreatic Cancer Killer, his daughter Julie and his wife Mary. They all read the blogs (perhaps not Nigel, but I forgive him), send me lovely presents regularly and even come to the hospital to support me, like they did today. Not a bad group to have onside when you’re going through something as traumatic as this. We sat and chatted for an hour and a half before deciding to give the rest of the customers some peace and quiet, and go our separate ways. It was a nice way to round off the afternoon.

I’ve been feeling unusual today if I’m honest. It isn’t nerves, I don’t think. The scan itself is almost irrelevant – you have to show up, follow the instructions and then you’re on your merry way. The letter scheduling the follow up appointment where I will receive the results came through this morning, though. Thursday May 26th. I thought I had more time to enjoy the bliss of ignorance. The oncologist said it’d be 2 weeks which would have been the following week, but he probably meant within the next 2 weeks. It should have gone to the MDT meeting by then at least, so what I will learn in that meeting will really determine the next phase of treatment. It may have thrown me, though, as I wasn’t expecting it to be next week. I’m glad it is – the sooner I know, the better.

The other thing is that it is early in the cycle for me to be being so active. I usually have a few days before I have any time constraints or commitments, such as hospital appointments. My chemo-fog brain feels like it is operating on auto-pilot. It may explain my inexplicable ramblings about the nurse at the start of the post, but I’d probably do that anyway if I’m being honest with myself. I’m now sat at home reflecting on the ongoings of the day… all I need to focus on now is pushing through the cycle and getting to that results appointment.

Before I finish the post, my Fiancee Anna and her best friend Sophie are running their first half marathon this weekend. They are raising money for The Christie, the incredible hospital that is providing my treatment. I’ve always been fond of the below lyric ever since I first heard it, and it feels relevant here. The band is a christian metal band that you are unlikely to enjoy, but you don’t need to enjoy the music to appreciate a well-written lyric. Those of you who have followed the blog for a while have likely experienced the breadth of my musical interest – I will listen to almost any genre to find something new and interesting.

“The walls of a church don’t make it holy.

It’s what’s authentic that completes the sum of it’s parts”.

The intention of the writer is to give credibility to his religion, I believe. The sheer act of building a church doesn’t make it a special building, it is the value that is then applied to it by the people who believe that it is of greater meaning than another structure. They use it as a place of worship and it represents something more to them – these practices elevate its status and create authenticity.

I feel the words are so applicable to The Christie, too. There are many things about a hospital that provide it with authenticity – the qualifications required to work there, the complex equipment used inside and the knowledge that you went there that time when you broke that bone, and you left with a solution that ultimately fixed it. The Christie adds another layer of authenticity, though. The staff, and the way that they talk to you and treat you, is unlike any other hospital I have set foot in. You feel that they care about you, and it doesn’t seem like an act. I’ve had so many deep, interesting and meaningful conversations with the staff at this hospital. They’re always ready to support you, whether that is having a laugh or sitting down and digging deeper into what is upsetting you. Sometimes, you just want to be treated like a human, not another roadblock to someone leaving work. At The Christie, I’ve never been made to feel like anything but a valued customer in a complex ecosystem, which is full of charged emotions, tough revelations and, sometimes, utter despair. It is an incredible place, and I’m so proud of these two for raising over £1300 for them already.

I will raise money for them myself eventually, when I am healthy enough to do so. For now, I will include the link to Anna and Sophie’s fundraiser here. If you can donate, please do. If my requests to donate to fundraisers is preventing you from turning your gas on this month, please do not. I don’t want to carry the weight of that burden – I’ve already got pancreatic cancer, didn’t you know?

Completing Chemotherapy…

The Chemotherapy Diaries

Taking a Sip From the Chemo Cup

It is good to have a project. Better when that project is something of your choosing, but a project is a project. This blog started off as a project and it has taken some significant steps to get it going. They weren’t significant meaning it was a very tough and arduous process, but I was trying to learn about buying a URL, hosting the blog, designing it etc when I was at my most ill. It added a layer of complexity. There was the usual lull period at the beginning where I was trying to establish how the different aspects worked. I’d read about starting a blog here and there, but was relying on getting some time with my friend who had started a blog for his design work. Eventually, one night when I was sitting awake, unable to sleep, I acknowledged that I was using this as an excuse for not learning myself. There’s little point relying on other people for knowledge that you know would benefit you if you just pulled your socks up and learnt it. Getting them to impart some of their valuable knowledge onto you can be a great thing to do, but if not being able to get their time becomes your excuse for not progressing YOUR project, you’re perhaps not being honest with yourself about what the problem really is. I know that is what was happening to me anyway. So that night I dived into domains, purchased one, purchased an email account to run the blog from, started messing around with themes and the design tool, and a few hours later I had the outlines of a blog (and no sleep for another night). A few days later, I wrote the first Road to Recovery piece and launched the blog page. I then added some of the poems I had been writing in the hospital and voila, all of a sudden I had a blog. It was real and it felt great.

Boring Lucy With My Blog Posts

Chemotherapy was an involuntary project which was every bit voluntary, but it is involuntary if you want a chance at survival. Your body has been fighting it for as long as it has existed in some way, you just haven’t been aware of it. I was forcing my poor body to train for and run ultra-marathons. It must have been sick to death of me by the time I was diagnosed; it was very much making it known by the time I finally went to the hospital, when my weight was dropping like a stock price and I couldn’t make it through a meal without excruciating abdominal pain.

During my meeting with my oncologist on Thursday, he had to reprint the form where I accepted all of the terms and conditions of treatment, and signed to agree to it. I had signed it during my first visit to The Christie but they must have sold it on eBay for an undisclosed amount of money – ‘Official Ebb & Flow Chemotherapy Form – Signed Original’. Someone probably Googled the blog and spent 50p on it, and is now praying I die and get some sort of notoriety posthumously for my cancer blog. For the record, none of this actually happened. The original had not been put into their system. There was a split second where I humoured the thought of threatening to sue them like we’re in the United States of America, but then I remembered that the care is all basically free and incredible. Reluctantly, I decided not to bite the hand that feeds. In all honesty, I’m just angry that I had to embarrass myself by showing another person my signature. It is not intelligible in the slightest and I should be far more embarrassed about it. They probably binned the first one thinking that someone had tested out whether the pen had ink in it by scribbling in the signature box.

It had been a nice few days running up to the final chemotherapy session. Anna came back from London on Friday, my best friend Luke and my amazing brother Greg have birthday’s this weekend, and there have been lots of people around to hang out with. Then the final chemotherapy session was yesterday, Saturday 14th of May! Well, the last for a while at least. I have the scan on Tuesday but won’t receive the results for two weeks. That means that there is a good window of opportunity to enjoy myself a bit and not focus on what they may say. Worrying about it won’t change them, just like hoping they are good won’t change what they are. At least it will identify what needs to happen next no matter what.

Let’s focus on some of the positives. I raised over £7,000 for Pancreatic Cancer UK, I have written a few posts for Pancreatic Cancer Action’s website, a good amount of running was done given I was on chemotherapy, no major delays in the chemotherapy cycle (although a few small ones), I had my writing published twice, and learned that my tumour had shrunk by about one third at the midway scan! I also baked the nurses 11 different cakes in total. I hate to admit it but I didn’t take one for the first session; it was before I started baking often and I was too scared to think about anything other than making it to the hospital and getting through whatever this chemotherapy thing threw at me. The start was rocky…

As I sat on the bathroom floor in the shower on the morning of the first session, I started to cry, anticipating what the chemotherapy was going to consist of. The oncology team had warned me that they would expect someone to be in bed about half of the time due to exhaustion. That’s twelve hours a day. It sounded like a lot and was worrying me. To make it worse, Google didn’t give me a lot of hope that the chemotherapy would do what I needed it to. Neither did the Pancreatic Cancer booklets that were handed to me after the diagnosis in the hospital in London. As I’d sat there struggling to sleep in the hospital room, I had decided to indulge in the ‘Pancreatic Diet and Enzymes’ booklet. It sounded the least risky; I was quickly proven wrong. One of the first things I read as I opened up the booklet was ‘In a small number of cases, the chemotherapy will successfully shrink the tumour.’ Well, that wasn’t what I wanted to read at that moment. It was never going to start well after that.

The first session was tough, there’s no doubt about that. It is also the one where you get an induction from the nurse and she tells you every detail of the chemotherapy; what it is likely to do to you, how bad it is for your body, all of the foods that you need to avoid, things to look out for that are definite emergencies, other things that are likely to be emergencies and finally, how some of the negative side-effects may last forever. The last point is referring to where you suffer from nerve-ending damage. When this does happen, the feeling in that part of your body rarely comes back. It has happened in my toes. If you touch the very end of them, I can only feel a weird sensation. The chemotherapy has also affected my taste and I struggle to fully taste food at the minute. I’m hoping that one subsides, pronto. What is the point in baking delicious cakes if you cannot even taste them? Oh right, it’s because your dad is addicted to cake and needs at least 5 slices before breakfast to ease himself into the day. If only I was exaggerating. For me, though, it isn’t worth the calories in the butter alone, and the five Creon tablets I have to take to break down the single slither of cake just put me off even more. I’m kidding, it totally is; that would be a damning review of my own baking to claim that it wasn’t worth the calories.

I heard the nurse inducting a man yesterday. He was sitting on the chair next to me so I heard every word – more eavesdropping at the hospital, I know. I really need to get a life, or watch more daytime TV if I’m this interested in other people’s lives. At least on TV programmes, people are choosing to put their personal lives out into the world voluntarily. When Anna and I were staying in Whitby, there was a book on the Kardashians on the shelf. I started reading it to see what this book could possibly be about but I got hooked pretty quickly. Their descendants were poor Armenians. The book covered these ancestors and how they moved to the west coast of America due to a prophecy foretold by a local man who claimed to see the future. A number of the village left within the next decade, and the remaining ones thought they were crazy believing this man. There was then some form of invasion from a neighbouring country, and the remaining people of their village in Armenia were killed in the attack. Not only had they avoided death, but they had moved to an area in America which was about to experience a boom. The building of dams in California meant that the area could be inhabited much easier. They made their lives there when it was tough (and cheap), but were there to reap the benefits as it became more and more popular, with Hollywood becoming the new epicentre for film. They started various businesses, which were extremely successful, and that is how her family started to accumulate wealth. One of them was a garbage collection business – I believe this was the first which was very lucrative, but I can’t remember exactly. SEE – I told you it was interesting! They know how to get you those Kardashians. I’m sure they approved the book before its release. I stopped again and we went out walking before I spent the rest of the weekend speedrunning the book.

Anna and I In Whitby – Half Way Through Cycle 11

Anyway, I was listening to the induction that the nurse was giving to the new patient. It is very interesting listening to it again when you are at the end of your treatment. You have such a different perspective on it all. Julie, a family friend, says that “you wouldn’t take paracetamol if you read the little booklet that came in the packet.” She’s so right. In the US, where Big Pharma actually advertise a lot of drugs to try and increase their sales, they list all of the side effects very quickly and comically at the end of the advert, usually with some montage in the background. It is like satire from a British show mocking advertising. The whole thing is very unusual when you are used to UK adverts.

An Example of an American Dug Commercial

As I sat listening to the nurse discuss some of the more harrowing side-effects I’ve heard, I couldn’t help but smile to myself. I was finally at the end, and none of it got too bad. It felt good, even if it is horrible to think that this must have happened to someone to be listed.

It is hard to feel overly positive about making my way through the chemotherapy when I have just learnt of another story which is extremely sad involving the same treatment. An incredibly supportive follower of the blog sent me a direct message on Twitter a few days ago, telling me that a family member who was critically ill with pancreatic cancer had very sadly passed away after only four sessions of treatment. Although I do not know them personally, the message was very moving and I could feel their pain, even if I could never know just how awful it must be coping with that pain right now. The harsh reality of cancer sinks in quickly sometimes; even the treatment is harrowing and causes a great amount of stress on the body and mind. It alone is sometimes responsible for the downfall of the individual. It makes me less ready to celebrate any victory I’ve had against the chemotherapy as it seems disrespectful. You have to find a way to enjoy these moments, though, as they do represent a real victory in a struggle which takes it’s toll on you. When a cycle is going well, you feel on top of the world. It makes you forget how potent these drugs are and what they are designed to do to your body. The brutal reminders come when you get a new symptom, or an existing one seems to worsen. Fear, anxiety and foreboding quickly dominate your every thought. “What if the cancer has spread?”, “what if the chemotherapy is leaking into my body?”, “why have I started shitting blood, does that mean that things have gotten worse?”. The mind can be relentless; you can’t shut off your brain.

But here I am, I have completed the initial twelve sessions of chemotherapy. It does feel good. Since Friday, I have been experiencing a new type of pain in an area just above my belly button. I keep worrying about it, fearing that it may be a spread to the stomach. I know that the cancer tends to spread more to the organs around it in the digestive system, with the most common spread to the liver (I believe). The pain seemed to subside when I ate. It is a bit unusual, but I don’t think it actually represents much of a threat. If it continues, I’ll call the hotline and get some advice from them. Guess where I won’t be going again? To Leighton Hospital. No way… I’ll take the hour drive to The Christie, thank you. Once you find a hospital you trust and a team that have your best interests at heart, stick with them. That has been my experience so far. Whenever I have attempted to go to another hospital to save time, I have ended up frustrated and more worried.

The only other advice I can think of that is fairly new is in regard to mouth ulcers. It has been the killer symptom for me, getting so bad at one point that I stayed in bed for almost three days, struggling to talk or eat. The Difflam mouthwash provided by the hospital is good but mine stated on it to use a maximum of four times a day. Ignore that – it can be taken every 2 hours. I don’t use Bonjela as it doesn’t cling to the ulcers well. Iglu is much better. You need to dry the site of the ulcer using kitchen paper before you try to apply it. The gel goes hard and creates a layer over the ulcer, but it sticks much better when the area is dry. Once it is dried and you have applied the Iglu, fan it with your hand to make sure the gel hardens. It then provides a layer of protection which stops them getting irritated and also helps to heal them up. That method was by far the most effective. Then, stay away from any food with spice in it. I absolutely love spicey food so I would continually try to still make meals with similar levels of spice in them, but it isn’t worth it. Your tongue feels like it is on fire for at best 30 minutes after eating. Also, get SLS-free toothpaste. It tastes gross (mine tastes like anise, which reminds me of doing shots at university) but it makes such a huge difference. Normal toothpaste has a similar effect to chilli and can really irritate the ulcers.

Also, I know it is incredibly annoying always being told to stay hydrated, but it makes a huge difference when on chemotherapy. Forcing yourself to hydrate and get out of the house once a day is really important. I’d go easy on myself for the few days if I was feeling particularly tired, but there always has to come a point where you take the plunge and become more active in a cycle. The ones where I have been proactive about doing this have usually been my best cycles. Sleeping and lounging around is extremely beneficial in the right measures, but can be a double edged sword for both your mental and physical health if you allow yourself to become complacent and stop trying to get up. Even better, get a little sausage dog puppy that loves walking so you have a positive reason to leave the house most days. You won’t regret it. They love cuddles too.

Lucy Getting Close Enough to the Sea to Reap its Fruits (she wasn’t a fan)

So, I’m not sure what will become of the chemotherapy cycles posts from here out. I’ll do a final update next week to see how the chemotherapy is measuring out, then I’ll do another one in a few weeks to update on how well I am feeling the further away from a treatment day I get. Other than that, the next time I’m talking about chemotherapy may be in the context of mop up chemo. Perhaps it is too hopeful and optimistic to claim that, but why not have some hope under these circumstances. The oncologist seemed assured that the MDT will be reviewing it after the scan and handing over to the surgeons as they believe I am at a point where something can be done to progress this further… lets see what the next scan says and hope for the best.

I’ve thoroughly enjoyed writing this series and I think it is probably the most consistent one I have made. The Road to Diagnosis series was exciting as it was real and contained twists and turns, but that had all happened by the time I started the blog. The Road to Recovery is a slow burner for updates, but perhaps it will increase again now I am out of the chemotherapy bubble. For some reason, I always found this series the easiest to write for. I naturally found things around me to talk about, as if the series made me more cognizant of events taking place around me. I’d soak them in then think about how I’d write about them, and how they would compliment my overarching point within the post. It is nice when you find stories and poetry in the world around you – the ringing of a bell on the ward as someone celebrates beating their cancer, a man pacing outside the hospital and smoking after sitting next to me in the treatment ward looking incredibly ill, and the countless conversations with the nurses.

At the end of my twelth session, the nurse went to the kitchen and divided out the cake I baked them onto individual plastic plates. She then walked around the ward offering the remaining slices out to all of the patients. It was a really lovely moment, and I hadn’t seen them do it before. Various people receiving treatment were shouting over to me complimenting the cake. Some of them had tried other ones before as the nurses had offered them a slice when I had left. “Are you the guy that made the cappucinno cake?” one woman asked me. “Yeah, I was actually. How did you know that?” I responded, actually feeling quite charmed by it. “I’ve seen you with a cake every time you’ve been here at the same time as me. They’re really lovely. What a great idea!” It was so lovely of her to say. I then stood at my chair packing up my stuff and talking to her. She had an operation to remove her tumour a few months before, and was now on mop up chemo. The cancer had spread in her case, but it seemed as though they had controlled it, despite having a recent scare of it spreading to her bowel. I didn’t ask her what cancer she was originally diagnosed with – it feels too personal to ask straight out of the gate. She then asked about mine, and was surprised to hear that I was inoperable. “You seem like a fighter – that’s the most important part of fighting a cancer. Just keep going, that’s all you can do, love.” Her words echoed with me. I thanked her and wished her well with the end of her treatment, telling her that I hoped I wouldn’t see her around the hospital again, as she only had 2 weeks left on chemotherapy before she should be clear. She understood what I meant, but laughed at the (lack of) sentiment. “I’ll keep an eye out for you,” she said. I gave her a coy smile before thanking the nursing team who were looking after me that day.

A weight felt like it dropped from my shoulders as I made my way down the stairs to go and meet my mum and Anna. I’ve actually done it… I made it through all twelve sessions of the chemotherapy. Onto the next thing, no matter how scary it may be!

Taken November 10th 2021, the Day I Got Out of Hospital After Having a Stent Installed in my Bile Duct – My Skin Still a Jaundiced Yellow, But Closer to Normal Than the Previous Two Weeks

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.

Whitby

The ‘C’ Word

English people are quite bad at recognising that their country of origin is very beautiful. I know this because I am an English person and I frequently undervalue the appeal of my homeland. When it comes to holidays, we usually favour taking advantage of cheap flights into Europe to get better guarantees of good weather (and usually cheaper alcohol too, depending on where you’re going). After all, the English have a terrible reputation to uphold overseas. We’ll be damned if any travelling Englishman tries to improve it by learning some of the local language or by not drinking 8 pints at the airport pre-7am flight. But navigating airports is a pain in the bottom, and I need to see more of the wonderful English seaside. I only made it to Dorset for the first time last year and I was absolutely stunned at how beautiful it is. So, I thought I’d try my hand at some domestic holidaying this weekend. That’s why Anna, Lucy and I booked a little Airbnb in Whitby, a picturesque English town situated on the Yorkshire coast in North England. It is really worth a visit.

I didn’t know a lot about Whitby before visiting it. To be honest, I still don’t know loads about it, but I certainly know more. There is an astounding demand for fish and chips. Usually, you cannot walk for 5 minutes in an English town without seeing another pub, which is true of Whitby too. The difference in Whitby is that the pub will have a huge banner outside it stating that they serve the best fish and chips in the country, whilst being sandwiched in-between two other places which also, somehow, serve the country’s best fish and chips. I’m not sure if there is a recorded statistic on how many individual chips are sold in Whitby per year, but I bet it exceeds the total number of ants estimated to exist in the world. And who gets to eat all of the chips that don’t make it into the stomachs of tourists? The fucking seagulls.

Before I start on this topic – yes, I know seagulls aren’t only in Whitby. I even know that the seagulls in Whitby aren’t the worst in the country… that award goes to the Brighton seagulls, who are absolute thugs. Take the worst animal on the planet and give them the diplomacy of a Londoner being told that they have to wait an entire FIVE minutes before the next tube will arrive, and the result is the scum which is a Brighton seagull. The audacity of these things is off the chart. I saw a Brighton seagull divebomb into a young girl’s portion of chips which were in her hand, knock them on the floor and then proceed to eat the chips as her entire family chased it around in circles. The family abandoned the operation when the rest of its gang all flew in to obtain some of the loot. The girl was off crying to the side by this point… I think she had lost her appetite.

I do have a particular bone to pick with the seagulls of Whitby, though. I’ve been woken up by seagulls every single day at 5am. I’m pretty sure no sentient being would make the noises these birds do at this time if they weren’t also aware of how INFURIATING it is. Waking up to songbirds is one of life’s greatest pleasures and I am lucky enough to experience it frequently at my parent’s house in Cheshire, where I currently live. They have a nice sized garden which contains a lot of bushes and bird feeders, the perfect combination for attracting birds. The nice kind of birds. Seagulls, however, seem to have learnt their morning call from someone who hasn’t stopped drinking for an entire year and has now forgotten how to communicate. In lieu of real words, they have resorted to simply making whatever noise they feel they can vocalise the loudest to disturb the most number of people, in hope that one of them understands what they are actually trying to say. “GAH… GAH… GAH,” they call to each other over their morning coffee (which they probably fished out of the ocean). I know that a neighbouring dog also hates the seagulls because it proceeds to bark incredibly loudly back at them all morning. I can only assume the owners of this dog are deaf because they make no attempt at stopping it from doing so. The dog is on my side, though, so I shouldn’t be getting annoyed at it. It’s the seagull’s fault, Dan. Remember that. Seagulls are the most obnoxious animals ON THIS PLANET. If I had been starved of food for an entire month and someone offered me a plate of seagull, I’d throw the meat straight into the ocean and proceed to eat the plate itself.

Despite being a walking zombie due to lack of sleep, I managed to pull my walking socks up and do a beautiful 7-mile walk along the coast on Saturday morning. We got the bus to a place called Robin Hood’s Bay and embarked on the walk back to Whitby. The weather started out a little cool, making us both panic that we had under-dressed as we got off the bus. That theory lasted about 30 minutes before we realised that we were absolutely boiling already and that it was only getting warmer. Anna tied her coat around her waist but I couldn’t bring myself to do it. It just looks so weird. I opted to carry mine for the best part of 5 miles.

Lucy absolutely loved it. For such a small dog, she really can walk a long way. I doubted that she would be able to see the walk through and suspected that we’d have to carry her some of the way. We didn’t! There were a few firsts along the way too; the first time she met a lamb up close, the first time she stepped onto a beach, and the first time that she saw the sea. She did not like any of them. At one point, we encountered a lamb which had managed to get through a fence and was on the walkway. It seemed quite distressed and (what I assume was) its family were on the other side, also panicking. They weren’t doing a good job of helping it resolve the issue. As we approached and decided we needed to assist, Lucy went into meltdown mode. She had no idea what it was, but she wanted Anna and I to know that she was not happy about it being there. Lucy has met sheep before, but they have always been far away or on the other side of the fence. I didn’t realise that she took confidence from fences separating her from other threatening animals – it actually makes me think that she’s smarter than I give her credit. I had to pick her up and turn away from the lamb to try and stop her barking and crying whilst Anna opened a metal fence and encouraged the lamb through. The lamb did so and then the entire herd ran as far away from us as possible. We like to think that we earnt ourselves some good karma from it. A couple walking slightly ahead of us totally ignored its plight.

Lucy On the Run – ft Terrible Australian Accents

The walk ended in Whitby. There are the remains of an abbey on a hill overlooking the town. It’s called Whitby Abbey, for some reason. Next to it is a brewery that serves pizza. We decided to call into it and have a pint and a pizza to celebrate. It had just turned 13:00 and we felt accomplished. The second we sat down, Lucy passed out and wouldn’t be stirred (other than when there was pizza on the table – you could get her heart to start beating again by waving food in front of her nose). It made for quite a cute sight and a few people came over to chat to us about her. She couldn’t have cared less and would only briefly open her eyes to give us ‘the stare’ if we were moving her too much or being too loud. The brewery is lovely – I’d really recommend doing the coastal walk and finishing in there. We didn’t go into the ruins of the abbey; It cost £10 to enter the site and we could see it from our table in the brewery anyway.

Another thing I’ve learnt about Whitby is that apparently, it has an association with Dracula. I haven’t read the book or seen any of the films which I assume exist, so I’ve only read what the relationship is about on Google. There are 199 steps up to the Abbey that he walks up in the novel, and they are now famous because of it. I didn’t count the steps myself but I’m willing to concede to what the legend says. There is Dracula merchandise in all of the gift shops and a museum called The Dracula Experience. People go Dracula mad in Whitby. Anna told me to strike a Dracula pose as we descended the stairs from the abbey. The one day that I didn’t wear my cape and fangs to go out walking – how frustrating. I didn’t manage the most convincing image and I’m pretty sure no one would ever guess I’m trying to be Dracula from what I am doing. If I’d just had chemotherapy it would have been better as the process seems to wipe any colour from my face for a day or two.

Dracula Dan Climbing the 199 Stairs

On Sunday we decided to drive to Newcastle as neither of us had ever been there. It’s another hour and a half north of Whitby. I wasn’t really sure what to expect. After spending the morning Googling ‘what to do in Newcastle’, I established that the main things were to walk the various bridges over the river and enjoy the quayside. Ok, not really, but that’s what someone suggested on a random forum when someone asked ‘what can I do with a few hours in Newcastle’. We decided to park South of the river and walk over one of the bridges, then find somewhere to eat.

As we made our way over The Tyne bridge, I suspected that we had over-anticipated just how good walking over a bridge could be. It wasn’t bad, it just wasn’t groundbreaking either. It is essentially a dual-carriageway with a pavement next to it but elevated from the ground. You did get a nice view down the river and into the city, but it wasn’t amazing. In Philadelphia, I used to regularly run over The Benjamin Franklin Bridge. That bridge was much higher, and pedestrians had their own separate walkway which went above the level of the traffic – a much cooler bridge experience. I always did my hill repeats on it.

As we approached the north side of the bridge, I noticed something laying on the ground. Lucy ran towards it with purpose so I assumed it was food. I pulled her back to inspect it closer. To my surprise, it was a used tampon. I didn’t see it on TripAdvisor, so I’m assuming it wasn’t a piece of shock art or a historical artefact. We took the executive decision to not let Lucy anywhere near it and proceeded to the quayside. Quite an introduction to the city. I’ve never seen Geordie Shore, but I assume it is a result of that show somehow.

We spent our few hours there walking around and getting a feel for the city. Neither of us ate breakfast, so we wanted to find a nice cafe quickly. The one we chose didn’t end up being very good. Hunger defeated logic. All of the food was overpriced and the quality was poor. I’m not going to name it as I’m not writing the blog to critique restaurants. Lucy seemed to enjoy herself, though. After incessantly crying because she was on the floor, I decided to pick her up and have her on my lap. She’s well behaved usually but she had been sitting in a car all morning, so I think she was a bit restless. We hadn’t walked around very much at this point. I was eating a cheese and tomato croissant when all of a sudden, Lucy lunged and ripped the top half of the croissant off and wolfed it down. The table next to us were in disbelief and couldn’t stop laughing. A woman on another table just looked horrified, but she looked that way before Lucy nicked the croissant; she didn’t seem too enamoured by the small amount of space inside, the pushy waiting staff or the large, overambitious menu options. Inside my mind I agreed with her, but I doubled down and ordered plenty of food just so I didn’t leave hungry AND disappointed. I had nothing but admiration for the move from Lucy. The croissant was quite average so it wasn’t a huge loss. I also wouldn’t usually order a filled croissant – why mess with something that is already perfect? I think Lucy wanted to teach me a lesson. Lesson learnt. We left feeling full but disappointed. The rest of our time was spent walking around parks and looking at some of the local sights. The only time we recorded anything was when we saw The Angel of the North from the motorway on the way home. It isn’t as big as I thought it’d be, but it was still cool.

Wow – The Angel of the North!

We got back to Whitby at about 17:00 and chilled out for an hour at the Airbnb. The sun was fully out now but it was still a bit cold. As it is our last night here, we wanted to go into the town for a while. We headed back out and went to a dog-friendly beach by Whitby harbour. We figured out how to make Lucy like beaches – show her that you can dig in the sand without consequence. Lucy is a big fan of digging. My dad, however, is not a fan of her digging. He is forever shouting at her for ruining the flower beds and digging up bulbs to chew on. Of course, knowing that she isn’t meant to do it only makes her enjoy it more, comme stealing croissants or trying to eat tampons off the street. Once Anna encouraged Lucy to dig and she realised it wouldn’t get her in trouble, she fell in love with the beach.

Lucy Finally Digging the Beach

So, I’m finishing this blog post off whilst sitting in the Airbnb on our final night here. My family got me a voucher for Airbnb my birthday – what a lovely and thoughtful present from them. We tried to book a few different weekends away but had to cancel, either because I felt too ill or because other medical issues got in the way. It is nice to post all of these pictures and videos and reflect on the past few days, knowing that I’ve successfully got out of my bubble. I like my bubble, but it is so beneficial to break out of it occasionally. We’ll spend a bit of time walking around the town tomorrow morning and give Lucy another run around on the beach, then we’ll make the two and a half-hour drive back to Cheshire before the evening rush hour hits. It’s been great, Whitby. I’m sure I’ll be seeing you again in the future.

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