Twelve Rounds with Folfirinox

The Chemotherapy Diaries

Me and My Siblings – Alfie, Rebecca, Freddie, Josie, Greg, Me; I’m Apparently Doing My Best Hannibal Impression

It has been a few weeks since my twelfth and final session of the Folfirinox chemotherapy. That feels like a suitable enough period to reflect on the whole experience before finally drawing a line under it. Whether that line is temporary or not, I’m not sure. I believe I’m likely to need more chemotherapy in the future, but not sure whether it will be Folfirinox or something else. If it was, I wouldn’t feel too excited about it.

Despite all of the experience I now have in tolerating Folfirinox, I never got to a stage where I looked forward to the treatment days. No one looks forward to receiving chemotherapy, probably, but I seemed to get more and more resentful of it as the weeks went by. In the first session, I was extremely scared, and then in the middle sessions I was grateful, knowing it was necessary, which made it feel better. By the final third, I was sick of Folfirinox. Getting an infection in the final cycle and having to go to the hospital twice in one day was the final straw. Chemotherapy and I had officially fallen out. By baking the nurses a different cake every treatment day, I provided an aspect of the process that I did look forward to at least. It was a useful distraction in the two-week cycle.

I’d usually trial the bake a few times in the week before, to get it to a place where I was happy I understood how to bake it well, then make it for them on the Friday before treatment, which was always on the Saturday. Each time I walked onto the ward, I’d casually hand them the cake and make some comment about it, slightly negging myself to give the illusion of modesty. In my head I’d be screaming “I KNOW THAT CAKE IS GOOD AS I HAVE FED IT TO MY ENTIRE FAMILY, ALL OF MY FRIENDS AND MY MUM’S DOG WENT TO GREAT EFFORT TO STEAL THE FINAL THIRD OFF THE KITCHEN WORKTOP!!!!!” The final point doesn’t speak of the quality of the baking to be fair. You could take some rotting lasagne from 5 months ago and leave it on the kitchen side, and he would do everything in his power to steal it. It’s not about the food for him, it’s about the thrill.

All humour aside, it really wasn’t as bad as I thought it would be. That isn’t to say it was fine either. My expectations of chemotherapy were sky high, in a negative way. I expected it to be absolute hell. At times, I probably would have argued that it was hell. There was a particularly bad cycle where my mouth was so full of ulcers that I couldn’t hold my tongue in its natural place in my mouth. To make matters worse, I then got some of the worst diarrhoea that I’d experienced up until that point…in my life. The combination of those things absolutely exhausted me. I remember laying in my bed, feeling more uncomfortable in my own skin than I had ever been. It will probably remain the most vivid memory I have of the entire chemotherapy experience. During that time, I told Anna that I “couldn’t keep doing this.” I wasn’t referring to the initial twelve cycles that I was engaged in, but the notion that I may have to repeat chemotherapy over and over again.

My oncologist at The Christie told me that chemotherapy may be used several times in my case, as it may take several different ‘techniques’ to get my tumour in a place that it can be operated on. The issue is that pancreatic cancer is extremely aggressive, meaning that it spreads around the body quickly relative to other cancers. During the break from chemotherapy, when other techniques are being applied, it gives the cancer an opportunity to spread ‘micro-cancers’ around the body via the bloodstream, increasing the likelihood of secondary tumours (or metastasis) growing in other locations. Chemotherapy helps to kill these micro-cancers, stopping them from getting around the body and taking hold elsewhere.

I’ve read more on how cancerous tumours operate recently in the Anticancer book and it is incredibly interesting. Apparently, the primary tumour secretes a chemical called angiostatin. That chemical stops any metastasis in the body from becoming the primary tumour; even cancer is an egomaniac, obsessed with maintaining its heightened social status among its peers. It isn’t entirely different from some of us humans. This process is responsible for the development of other tumours post-surgery. The primary tumour is removed in surgery, ‘curing’ the individual. Microcancers may remain in the blood, though, and may even have a footing in other sites in the body. Without the primary tumour secreting angiostatin, the other sites are unabated and can become the primary site of a new cancer. I believe this to be true, if I understood it all properly, which I probably didn’t. It is extremely interesting whether I understood it all properly or not – I can see why it is of interest to people who work in the medical profession. The book was also published in 2008 so who knows if new information has come out, or new techniques for stopping this from occurring have been established. I assume the use of mop-up chemotherapy helps to stop this happening in many cases.

A quick Google of Folrifinox tells you all you need to know about it as a treatment. Pancreatic Cancer Action Network’s website states that it is ‘known to be a particularly powerful chemotherapy regimen and can cause severe side effects in patients’. It goes on to talk about a clinical trial of the chemotherapy, staying that ‘The patients in this trial received a modified version of FOLFIRINOX, which was intended to lessen some of the side effects. Still, more than 75 percent of patients who received adjuvant mFOLFIRINOX [modified Folfiriniox] in the clinical trial experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dosage was modified’. To paraphrase the above: Folfirinox is really fucking strong and if you are put on it you are VERY LIKELY to get gross side effects, like pooing blood and developing sores the size of islands on your tongue. To put it in terms that the average person may relate to more: Folfirinox is like drinking 6 pints of a beer that you hadn’t heard of, only to realise it is actually 46% and not 4.6%, but noticing this too late to do anything about what is about to happen to you. The key difference? Drinking beer probably won’t save your life; Folfirinox just might, if you’re lucky. I love the way that they state ‘more than 75 percent of patients…experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dose was modified’, as if this is meant to make you feel good about the treatment. “It’s ok, only OVER THREE QUARTERS of the participants experienced SEVERE side effects – but you’ll probably be alright. Good luck with your treatment, sir, we can always reduce it if we need to but it might not work as well. Why have you gone so white? And why is vomit coming out of your eyes? Have you started treatment already? That’s a common side effect of it if so,” I imagine the oncologist saying, as he welcomed the first patient for treatment after Folfirinox was approved for use.

In my experience, the most typical reaction from doctors/nurses/anyone who understands anything about chemotherapy when you say you’re on Folfirinox ranges from despair to awestruck. It is worth noting that these are the extremes of reactions and most don’t fall into these categories (the former is a total exaggeration; the latter is likely to be my own ego speaking and not based on a reaction from any walking, talking, breathing human). “That’s very toxic stuff,” or “You look amazing!” are the most common things said in response. For that reason, it is mandatory to be as smug as possible whilst being treated with Folfirinox; you may as well enjoy the very small list of benefits that come with being on it. My recommended responses are as follows:

Modest: “It isn’t that bad once you learn your cycle”

Coy: “Yeah, it’s been a little tough”

Forcing Sympathy: “It’s been incredibly difficult”

Brave: “I’m just keeping my head high and fighting through it”

Demanding Sympathy: “People who haven’t been on it just don’t understand”

Pushing It Too Far: “It’s the hardest thing that any individual has ever done, EVER”

I’m sure there are other responses outside of the above, but they’re a good starting point if you’re new to Folfirinox. Just play around with the wording and make it your own. If you want extra sympathy, really lean into those nasty symptoms – of which there are many.

For me, the worst symptoms (as mentioned previously) were mouth ulcers, diarrhoea and fatigue. Nausea was a problem on treatment day, and sometimes for a few days after, but generally it went quite quickly for me. The anti-nausea medication that the hospital give you is very effective. The same applies for the anti-diarrhoea that you are given. For some reason I thought I was doing a good thing by trying to not use the anti-diarrhoea until I decided that things were going too far. By about cycle 8 I had dropped this ‘heroic’ stance and realised that just taking the medication as soon as you had loose stools was far better. You’re only spiting yourself if you try to hold out, even if you think it is for good reason (mine was that I was “taking enough tablets”). The longer the diarrhoea lasts, the more nutrients you lose. It also results in extreme exhaustion. It just isn’t worth it.

For mouth ulcers, I really didn’t find a way to avoid them completely. I had to learn how to treat them better, which I covered in a previous post. Since writing this, I also started to swirl my mouth out with Milk of Magnesium; I’m not sure if it works well, but I was willing to try anything. The key one for me was applying the Iglu product early on. When I didn’t, the ulcers would get more irritated during eating and it would make them far more painful. In the last cycle, I was eating a sandwich when I realised there was red stuff all over the bread after I had taken a bite. I looked in the mirror and realised that the seeds from the bread had torn the ulcers apart whilst I was chewing. My teeth were all stained red with blood. You get so used to having pain in your mouth that it becomes difficult to know when something has worsened. The Iglu helps to prevent issues like this, so long as you consistently apply it. It doesn’t taste the best and it gets stuck to your teeth, but it’s a small price to pay if they heal quicker and are less painful.

Another, and more generic symptom of chemotherapy, is neuropathy. I say it is generic as it is not specific to Folfirinox, although I guess none of these symptoms only apply to Folfirinox but whatever, I stand by what I’ve written. It is where the nerve endings are damaged and you lose feeling or have a strange feeling of pins and needles. I believe it only occurs in the extremities of your body. It can take months to recover from, even after finishing treatment. Sometimes it never goes away and the damage is permanent. I have it in the end of my toes and fingers. The oncologist said that because it happened quite late in my cycle, he thinks I should recover fully, but it is currently worse than ever. I have a tingle as if I’ve slept on them all night, and woken up with hardly any feeling. It really does feel like the blood flow is being restricted sometimes. I’ve found the problems to vary between having neuropathy in my fingers vs my toes.

Having little feeling in my toes is annoying whilst running as I kick the floor a lot more regularly. My slippers also fall off when I’m walking up the stairs; I used to have to bend my toes a bit to keep them on as I climbed the stairs. They are slip-ons so fit quite loosely. Currently, I can’t tell if I am bending my toes enough whilst going upstairs, so they always fall off my feet. The biggest frustration with my fingers is completing tasks that require a level of feeling in your fingertips. For example, doing the buttons up on a shirt is really hard now. They’re small things that are impacted, but it isn’t a small thing to think that you may never go back to feeling ‘normal’ in those areas. It sounds likely that I will, but it has only worsened so far. Hopefully they will gradually get better, as more time passes from finishing treatment.

The headline of the treatment was that it reduced my tumour size from 3.2 to 2.1. All of this reduction came in the first 7 sessions. As the oncologist relayed this information to me during the mid-treatment scan result meeting, I had to scratch my head. I’d never been told how big my tumour was before. The figures didn’t make sense to me. “Millimetres are surely too small…it can’t be in meters, though. Does she mean centimetres?” My brain was trying to figure out how something so small could cause such a problem. After a few seconds, I asked “2.1 centimetres is that?” She confirmed. My naive non-medical brain was screaming “2.1 centimetres? Are these people serious? It’s absolutely tiny! JUST GET IT OUT OF ME!!” I knew it wasn’t that easy, but it really should be. 2.1cm is pathetic. If it ends up killing me, I’m going to be more indignant than sad on my deathbed. “2.1cm… that’s probably smaller than the circumference of a polo mint,” I’d say with my final breath. I wouldn’t regret it either.

There wasn’t any better news at the final scan. I’d already had my good news apparently. We went into the meeting hoping that the oncologist would tell us that surgery was now a foregone conclusion, but it wasn’t to be. “It is still not clear from the scan whether the tumour can be removed or not. The case is being passed to the team of surgeons to review and decide what they want to do next,” the oncologist said. He was living up to his opening promise of “not having any bad news” for me, but only just. ‘Not bad news’ feels like a pretty low bar to set as a standard. I might start measuring everything I do in life against it. “How was your week, Dan?” Someone may ask me in a few months. “It was not quite bad,” I’d reply with a half-smile to emphasise the uncertainty. I’m sure that response would be welcomed with an absent glance as they got their phone out and chose to read about whatever awful thing was going on in the world as an alternative to hearing about my ‘not quite bad’ week. At least the news commits to being about negative things all the time. They’d probably start ignoring me after a while – it’s pretty wearing dealing with that level of indifference.

I have to give credit to Folfirinox here. It did manage to shrink my tumour by around a third. If someone had offered me that outcome five minutes after being diagnosed in the hospital, I’d have cried myself dry. It’s good to remind myself of that when I start to feel disappointed in it. Ending the treatment on a high would have been great, with another resounding success in terms of further shrinkage, but it still has done a good job. My tumour markers also came right down, which is a very positive sign. Although it is a gruelling treatment regime, it clearly does work well. If the chemotherapy was only in clinical trials in 2018, I’m sure the improvements in statistics haven’t started being reflected yet in terms of survival rates etc. That makes me feel somewhat better about how bleak the statistics are, even if I don’t know it to be true.

To finish this, I will be more serious. If you are currently on Folfirinox, or any other chemotherapy, I want to say that you really are amazing. I’ve only got experience of the treatment I was on, but it was tough. Really tough at times. I know I have said in this post that it wasn’t as bad blah blah, but your standard for ‘bad’ quickly changes when you are diagnosed with cancer. You become used to living with a level of pain, uncertainty and discomfort that no one should have to face in their mortal lives. Definitely not at 29, though I am nowhere near the youngest person I saw in hospital receiving treatment. That is really hard to accept – but cancer doesn’t care whether you accept it, whether it is moral and who it is growing inside of. It’s almost pointless to evaluate it in such terms, but it’s impossible to not.

I’ve heard stories of people having far worse times with chemotherapy than I did, and I’ve seen plenty of people in hospital on other types of chemotherapy that seem in a bad way. Although it is tough, it’s one of the best ways that we currently have of fighting cancer. Similar to exercise – you have to push through some pain to improve your final results. Keeping yourself physically active, mentally well and having a relatively good diet was essential in my experience. It may feel like a lot to get out of the house every day, and some you won’t be able to, but it will really help you out. Chemotherapy may be tough, but you have a plan to follow and objectives to hit. Every treatment day you find yourself back at that hospital is another one ticked off the programme. It doesn’t last forever and you feel great when it’s over (and perhaps a little lost too, but that’s Ok). I know that for a fact – I’m currently feeling better than I have in months, and I’m hoping I’ll only be getting better with every day that passes until the next treatment phase begins.

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.

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

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.

Legs Eleven: The Penultimate Cycle

The Chemotherapy Diaries

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

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

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

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

“Last One” – My Appointment Card

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

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

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

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

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

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

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

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

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

Lucy Running Through the Grass

Covid, Meet Chemotherapy

The Chemotherapy Diaries

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

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

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

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

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

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

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

Lucy in the Sun on Sunday

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

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

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

Illegitimi Non Carborundum

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Illegitimi non carborundum

Betrayed by My Own Blood

The Chemotherapy Diaries

Lucy and I Enjoying Our Sleep

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

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

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

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

Drew’s Birthday Cake

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

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

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

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

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

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

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

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

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

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

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

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

A Level of Commitment to Birdwatching That is Unparalleled

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

Low Platelet Bruises Don’t Mess Around

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

Lucy Raring to Go to Huddersfield

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

Days Away

The Chemotherapy Diaries

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

Days Away – Pentimento

Picture from my 29th Birthday Gathering

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

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

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

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

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

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

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

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

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

Lucy’s Perch on Top of the Sofa

Treatment Cycle 6 + 1

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

Biscuits from Larissa!