Mouth Ulcers and The End of Chemotherapy

25th January 2023 godley93Blog, Cancer, Chemotherapy, Health, Hospital, Lifestyle, Massage, Nurse, Pancreatic Cancer, Positivity, Recovery, Treatment, Ulcers11 Comments

The Chemotherapy Diaries

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.

Under Surveillance – The Final Cycle

8th January 202326th January 2023 godley93Anxiety, Anxious, Blog, Cancer, Chemotherapy, Christmas, Health, Pancreatic Cancer, Surgery6 Comments

The Chemotherapy Diaries

I draw a line in my life

Singing, “this is the new way I behave now”

One of my favourite writers is George Orwell. For years, I only really knew of his novel 1984 and the novella Animal Farm, and I wasn’t too fussed about either. It was only when I Googled for pieces of work similar to Bukowski’s book ‘Ham on Rye’ that I found out that Orwell also wrote a few non-fictional pieces. The best rated of these was ‘Down and Out in Paris and London’, a book written about Orwell’s time spent living in extreme poverty in Paris and London. He painted such a vivid picture of the exceptionally poor conditions these people lived in; his writing exuded empathy for their struggle, and you could always sense his appreciation for them in the way he wrote. The novel presents a cast of characters, very few of which have anything to be positive about in life. They are all living day to day, barely making enough money to put a roof over their heads, and frequently having to eat nothing at all, or settling for stale bread which they managed to negotiate the price of at the end of the selling day. I read the whole novel in a single day, and couldn’t stop thinking about it for weeks. Despite this being a favourite book of mine, I never got around to reading another one of his non-fictional pieces titled ‘The Road to Wigan Pier’, which has been on my radar for years.

A few days ago, as I sat absently watching TV, my phone vibrated in my pocket. I unlocked it to see that Audible had charged my account for a new token. If you aren’t aware of how Audible works, you essentially pay a monthly subscription fee which gives you a single token each month, which can be used to purchase any audiobook you like. If you wish to buy a book without a token, they are usually significantly more expensive. The scheme essentially encourages you to purchase a single item a month using your token, and then spend that month listening to it. These tokens build if you do not use them, and I had banked up a total of 6 during my time receiving treatment for cancer, as I had stopped using the service entirely. It would have actually been a great time for me to use it far more, but I used to listen to things primarily when walking around London, and I hadn’t been doing a lot of that over the past year, so the habit was broken, and it didn’t seem to be coming back. I’d subsequently decided to pause my account, so I wasn’t amassing enough tokens to purchase the entirety of Stephen King’s back catalogue.

Audible encouraged me to pause it for a set amount of time, though, as opposed to cancelling it, as that would lose me my tokens, and that set time had clearly come to an end. I decided it was time to start using some of those tokens, and I immediately purchased ‘The Road to Wigan Pier’. I may as well tick it off my incredibly dull bucket list… Some people want to skydive or visit one of the great wonders of the world, I want to sit in my bed and listen to someone reading back to me the depressing conditions that coal workers resided in during wartime Britain. Each to their own, I guess.

A few nights ago, I couldn’t sleep. It was about 3:30am; my abdomen was hurting, and I was concerned that something was going wrong with my cancer. At this point, I could stub my toe and 5 minutes later worry that my toe hurting may be linked to the cancer spreading. Can you get cancer in the toe? Probably not… If you can’t, I’ll likely be patient zero of the toe cancer world.

Laying in bed, I decided to cheer myself up by listening to ‘The Road to Wigan Pier’. The first few chapters are dominated by Orwell describing the brutal conditions of the coal mines. I sat with my headphones in, looking out of a small gap in the curtains. Through the break, I could directly see a streetlight on the road outside of my parent’s house. Rain was pouring down. I tried to follow single droplets as they made their way down the window pane, but they were quickly lost in the onslaught. Orwell was describing how coal workers have to walk anywhere from 1 to 5 miles underground to get to the coal face. The temperature in the shaft is unbearable, and the miners have to traverse a complex network, most of which they can barely even crouch in due to the size of the opening. That entire journey doesn’t even count towards their working hours for the day, and once they reach the coal face, they spend 7 hours on their knees, shovelling heavy coal onto a conveyer belt, before making their way back through the tight tunnel system, coal dust heavy in the air, before being pulled back up to the surface on the hoisted platform. I wondered if I had any right to complain about anything going on in my life compared to this world Orwell was painting. It may have given me some helpful perspective on my life, but it wasn’t helping me fall back to sleep. I turned it off and listened to some mindless podcast instead, which allowed me to fall back asleep in little time.

I’ve just started cycle 3, the final cycle, of the mop-up chemotherapy. Cycle 2 was a stagger – with 2 delays in treatment due to my liver functioning being too poor to proceed. The resolution to the issue seems to be the oncologists approving a new ‘permissible’ reading for the liver functioning tests, meaning that my liver can be slightly more fucked than it could before, without it triggering a delay in treatment. Although I am happy that delays are less likely to occur in cycle 3 due to this, I am sceptical.

Much of cycle 2 was spent with me feeling incredibly ill, spectacularly tired and constantly in fear of the next dose of chemotherapy tablets that I had to take that day. The dosage is 3 tablets, twice a day, and every time I have to take them, I throw them all back at once and quickly down some water to get rid of them. They almost make me choke every time; not because I struggle to physically get them down my throat, but because I can’t help but view them as evil little bastards that are going to make me feel more ill, more tired and more angry that this is really considered the best way to treat any illness in the modern world. The treatment might just save my life, though, and I do need to remind myself of that fact sometimes.

The final delay in cycle 2 meant that I would still be in the height of the chemotherapy treatment on Christmas day, whereas this was supposed to be during my week off between cycles. I was quite gutted about this, as Christmas is my favourite time of year. I wanted to feel my best around this period so I could see friends, eat too much and allow myself to decompress a little after a tough year. It wasn’t to be, though. I still managed to do most of those things, but there were a few dodgy periods.

A few days after Christmas, myself and 19 of my friends went to a local restaurant for a big meal. I’d really been looking forward to the event for weeks. We don’t all get together very often, so it felt novel and exciting. During the day, though, I’d felt very anxious and not myself. They are feelings that I am becoming better acquainted with these days, as I struggle to wrestle with the post-surgery world I inhabit. I’m constantly fighting with my volatile blood sugar levels due to having no pancreas, and the mop-up chemotherapy gives me more headaches in a single day than I have experienced in the rest of my life. They make it especially hard to get out of bed in the morning, and I frequently find myself unable to move for 2+ hours. Mornings used to be my favourite time of day; now they pass me by without barely acknowledging me.

For the first hour or so, I was quite enjoying the meal, but at some point, a trigger switched in my head without me realising. As I sat there, I looked around me at all the people I know and love, enjoying themselves, laughing, drinking and chatting away. I felt like a ghost; like there was a void around me separating me from them. I tried to shake it off and engage, but I couldn’t. All of a sudden, I felt like I was suffocating. I told the group that I wasn’t feeling too well, and that I needed to leave. After a few laboured goodbyes, I made my way out of the restaurant. The second the door closed behind me, I burst into tears. It surprised me as much as it surprised the man walking towards me on the street. He looked at me like I was crazy – he probably thought I was drunk.

I took a left turn to get off the main road and made my way back to my parent’s house via the quiet route, where people were less likely to see me and judge me. In the park next to their house, I sat on a wet bench and pushed my palms into my eyes, hoping to seal my tear ducts and stop whatever was going on. The episode seemed to be passing, so I made my way home. As soon as I walked into the front room with my parents, I tried to forget about what just happened, but couldn’t open my mouth without reverting straight back to that state. I burst out crying again, struggling to breathe; they asked me what was wrong, but I couldn’t muster an excuse. I still can’t. The whole thing was weird. “You’ve been through so much,” they both said to me in a comforting tone.

I tried to process what had brought it all on, but I couldn’t pinpoint anything. I just felt sad. More sad than I remembered feeling at any point during the whole 6 months of initial chemotherapy. The experience was annoying me – I felt angry at myself for not managing to be more positive under such good circumstances. My end-of-chemotherapy scan is at the end of January; if that comes back as clear, I will be classed as ‘cancer-free’ for the first time since my diagnosis. It should be so positive, but I now find myself looming over what that means. All of the statistics around pancreatic cancer are so depressing; you feel like the oncology staff are all treating you like a ticking timebomb who they expect will have a reoccurrence any day. It doesn’t feel like it is ‘if’, it feels like it is ‘when’. During a routine check-up call with one of my oncology team, I asked if I was technically in remission if that final scan shows no cancer.

“No, you’ll be classed as Under Surveillance,” she said. I was probably asking for the wrong reasons. I wanted to hear a medical professional tell me that I’d be getting that big green light. Perhaps they’d even ask if I want to ring a bell. Such celebrations don’t seem to be granted to those with pancreatic cancer. We’re put ‘Under Surveillance’; an Orwellian phrase with sinister undertones. Sometimes, you just want someone to buy into your bullshit. Is it so hard to grant me a single ounce of hope? I messaged Ali Stunt, the CEO of Pancreatic Cancer Action, explaining that I couldn’t find any definitions of ‘Under Surveillance’ on any cancer websites and that I just wanted to know if I could tell people that I was technically in remission if that scan is clear.

“You will be technically in remission, but they’ll be keeping a close eye on you,” she said. “They don’t like using the term ‘remission’.” She’s a wonderful person to be able to speak to about these things; she has been through it all. She understands how hard it can be.

Last Tuesday, I had my first infusion of cycle 3. As I waited in the chair for the chemotherapy nurse to come over and start my treatment, I had my head in my hands. The smell of the chemotherapy ward had made me gag as I walked in, not because it is bad per se, I just associate it with all of the sickness and hurt that I am feeling at the minute. Just being there makes my head spin.

The nurse came over and asked me if I was Ok. After I unloaded on her, she responded, “my sister died of pancreatic cancer about 10 years ago. They could barely treat it at all then.” She turned the iPad that she had in her hand around to show me the screen. At the top was my name and date of birth. Next to this was a section titled something like ‘Treatment Objective’, which was defined as ‘total eradictaion of the cancer.’

“They still see the objective of your treatment as killing all of the cancer, and giving you a normal life again,” she said as she pointed to the screen. It was quite awe inspiring; I wondered if it was a tactic she had adopted before. It’s a really powerful one. That did make me feel better, and I’ve reminded myself of the moment a few times since it happened.

I’m back in treatment on Tuesday for session 2, assuming my liver functioning doesn’t disrupt the schedule, like it did during sessions 2 and 3 of the last cycle. My challenge to myself is to try and get some of that positivity back that I used to have during my first bout of chemotherapy, and stop focusing on the negative. I’m not working down a dusty mine shaft, and my treatment objective is still to eradicate the cancer. There is plenty to be grateful for.

I hope that everyone reading this had a lovely Christmas and New Year, and that you are dealing with the January blues as best you can. It will hopefully be the month that I am told that I have no signs of cancer. What a way to welcome 2023 that would be!

Failing the Blood Test

6th December 2022 godley93Blog, Cancer, Chemotherapy, Death, Health, Lifestyle, Mental Health, Pancreatic Cancer, Recovery, Treatment8 Comments

The Chemotherapy Diaries

Last Monday, I read a victim story posted by Pancreatic Cancer Action on Twitter. I try to read them when I see them, as I’ve written for the charity a few times, and they generously shared my story on their website before. It feels like a tit-for-tat situation – people read my story, so I want to do the same in return. What I read that day instilled the fear of god in me, though, and it continues to haunt me.

There are a few things that are creepy about the story. Firstly, the subject’s name is Daniel. Who else is called Daniel? You guessed it – ME! Daniel was also very young to be diagnosed with pancreatic cancer, being only 37 years old. His diagnosis was stage 2, and he was able to go straight for surgery, something which I wasn’t able to do. On the day of his surgery, however, he failed the mandatory Covid test, and his operation had to be delayed. When they finally performed the operation, they opened him up to find that it had actually spread to an artery, like mine had. The surgeon thought in his feet and managed to get the whole tumour out, with good margins, by performing a total pancreatectomy. Who had a total pancreatectomy, and had their tumour removed with good margins? You guessed it – this guy writing the blog! Hopefully, you’re 2 for 2 in the Ebb and Flow quiz today.

So far, so good. These stories are always hard to read, especially when you have pancreatic cancer yourself, but there wasn’t anything abnormal about this story yet. I was reading the story and thinking about all of those pivotal moments in my journey so far – the horrific news of the diagnosis, the anticipation before the surgery, and the elation upon hearing that the tumour had been removed with good margins. Then, I started to read some information which I couldn’t tether to my personal experiences so far…

Daniel started a regime of mop-up chemotherapy. Can you guess what regime he was following? You might be able to… he was on the exact same chemotherapy routine as the one I find myself on. Can you see a theme emerging?

Four cycles into his treatment, he became very ill and began projectile vomiting. After going to A&E, he learnt that his cancer had returned, was now in the bile duct and stomach, and was essentially out of control. Daniel was moved to palliative care. Despite being given only days to live, he managed to fight on, with the oncology team eventually deciding to put him on further chemotherapy after he miraculously started holding food down again. Unfortunately, after 3 further cycles of the new treatment, his tumour markers flared up again, and the decision was made to stop.

On June 5th 2022, my wife’s birthday, he passed away.

The story is tragic by anyone’s standards, but it hit me differently. So many things jumped out of the page at me. I tried to process what I had read alone. It didn’t work. I mentioned it to my mum, and she immediately broke into tears. I sent it to my wife, who was working down in London; she didn’t speak to me for hours, before ringing me and telling me that it had really affected her. I felt terrible, yet it stayed on my mind.

I’d written myself into the tale… Whilst recovering from surgery, I had to go into A&E after projectile vomiting for about two hours, but it turned out to be an issue with my bowel. What if that had been a spread? I’d broken down in tears in the hospital at the mere thought that it could be; I can’t imagine how I would have responded if it had materialised to be true. As I sat there processing what I had read, I imagined receiving the news that Daniel had at the hospital when he had gone into A&E. I’m not sure if it is how the article is written, or if I can just relate to it incredibly well, but the whole thing emanated pain and struggle to me. I was living it.

Then I thought about my treatment days. The main thing that keeps you positive about attending chemotherapy is the knowledge that it is the primary device you have in fighting your cancer. I hadn’t given much thought to the idea that you could show up to a chemotherapy session, only to be told that your blood results have shown a spike in the tumour markers and that you’ll be moved to palliative care. Of course, I knew something like that was technically possible, but I assumed that it was such a rarity, it was almost not worth worrying about. Now I was picturing myself walking into the chemotherapy ward, greeting the nurses with a smile and making some inane chit-chat about it being cold outside, only to be met with those eyes that I’d seen before my diagnosis. People steel themselves when they’re delivering life-changing information – it is palpable before a single word leaves their mouth; you know something is wrong. “Your markers aren’t good, Daniel. The team is deciding what the best course of action is, but for now, your treatment is on pause.” I was writing the script and everything. It felt like it was really happening to me. My sleep was laboured that night. I’m still struggling to shake it all off.

The next day I was due to have treatment at 14:00. At around midday, my phone started to vibrate. I looked at the screen and saw ‘No Called ID’. The hospital. I took a deep breath in and wondered why they would be calling me. I’d done bloods the day before. My mind was already hypothesising.

“Hey,” I said, nervously.”

“Hi, Daniel. It’s The Christie here. I’m sorry to tell you so late, but your liver functioning is extremely high. I can’t get hold of the oncology team at the minute, but I’m sure they’re going to tell me to delay your treatment by a week.”

This had happened to me before. I hadn’t thought anything of it last time. My liver is a busy body at the minute – trying to process all of the chemotherapy drugs (and the odd beer I have when I decide to ‘treat’ myself). Things weren’t the same this time, though. After reading Daniel’s story, I was prepared for a disaster. It was happening.

“What does that mean? Could it have spread?” I asked.

I honestly can’t remember what the nurse responded to me, but she wasn’t shocked by the question. She reassured me that it is very unlikely to be and that my liver likely just needs a break from the drugs. She then had the presence of mind and heart to ask me why that had been the first thing that occurred to me. I explained the story I had read the night before. She sighed and made a light-hearted joke.

“I hope your mum and wife have banned you from the internet for a few days.”

She told me that the nurses were all there for me, that I could ring them whenever I needed to, and that I need to stay positive. It was helpful to hear those words, but I’d be lying if I said it resolved the issue. It didn’t. I spent the rest of the week feeling incredibly conscious of every abdominal pain, fantasising about it until it grew out of control. I didn’t need a scan or a doctor; it had spread. I knew it as a fact.

I’ve managed to settle down a bit since last week. Today I had treatment again. Apparently, my liver functioning is still high, but it is within the permissible limit. The thing that is still bothering me is how ill I seem to feel all of the time. This morning, after a week off the drugs, I was feeling better than I have been. I managed to have a solid morning of work where I finished a few things that had been hanging over my head. Treatment was at 14:00, and after about 10 minutes of being hooked up to the line, I started feeling notably worse again. Now, I feel tired and sick, and the nerves are starting to come back.

For some reason, one of the first things I thought about when I got home was how happy my dog Lucy is every time she sees me. It then occurred to me that if I did die, she’d never be able to understand what had happened to me. In my mind, she would forever think I’d left her and would be expecting the next knock at the door to be me back. Maybe I’m dramatising it too much. Maybe she wouldn’t even remember me after a few months. The feeling that she would always be waiting for me to return feels harder to process in some ways than my own family dealing with my death. At least they understand that this is all part of life and that someday the same will happen to them. I doubt a dog is aware of such things. It is all just a stupid, morbid thought anyway, but it is upsetting nonetheless.

I’m really not sure if it is because of the article I read, or if I’m just in that sort of mood at the minute. It frequently feels like life is just happening to me at this minute; as if I am not an agent in its happening. I feel myself getting frustrated at things that wouldn’t usually bother me, and I’m spending a lot of time being annoyed at myself for not being more present, or for not managing to enjoy things as much as I want to.

Two of my close friends have recently raised the subject of Survivor’s Guilt with me. After talking to them about the way I’ve been feeling, they both responded with the same thing independently of each other. Perhaps I am experiencing a bit of Survivor’s Guilt, but at the same time, I don’t classify myself as a survivor yet. Things are still very early on, and as Daniel’s story showed, a couple of months don’t mean that much when pancreatic cancer is involved. There probably is an element of it in play, though. It isn’t nice to read about someone’s story that is so similar to yours but with the worst outcome possible. One side of me selfishly doesn’t like it because it opens up that reality as a realm of possibility for my own fate, but it is also because I can relate to so much of the story. I’ve been in many of those positions spoken about, and I know how it felt to be there. The faces of my loved ones wet with tears; the sternness of the diagnosis. That feeling of utter helplessness when the reality sets in that your future feels more uncertain than ever before. It’s horrible.

But the tedious trip through chemotherapy drags on, and I’m grateful that it does. In spite of all of my negativity at the minute, I am managing to gain some useful perspective on my situation. I’m still plodding along; I’m still planning on moving back to London in a few months, so I must have some faith in the likelihood of me surviving this thing a little longer. My amazing friend Dee told me that I was probably in survival mode last year, which would have been helping me kick on in the hard times. I think there is truth in that. This time everything feels like a chore, and I just want to be rid of the entire experience. It was almost a relief to find out that my liver functioning was bad in some ways, as I thought the sickness was all in my head for a week or so. Now I just need that poor liver functioning to not result in some kind of spread of the cancer. I’m not drinking beer during the World Cup games, and I’m trying to eat as well as I can when I feel like eating… how much more can I give? I already hate every pancreas in the world, don’t make me start hating livers too.

Chemotherapy Returns: A Tale of Tiredness & Ulcers

30th October 2022 godley93Blog, Cancer, Chemotherapy, Health, Lifestyle, Pancreatic Cancer, Recovery, Surgery, Treatment, Ulcers6 Comments

The Chemotherapy Diaries

Back in the chemotherapy fog…

As I lay on the sofa a few nights ago, the TV show I was watching ended. After a few minutes of adverts, a sound I dreaded came on… The news was beginning. I couldn’t see the remote around me, and I was feeling worn out from the chemotherapy. It’s becoming more regular for me to fall asleep on the sofa involuntarily, my personal signature of chemotherapy. I’d been in and out of sleep on the sofa for a few hours at this point. The sound of the news starting, with the summary of all the goings-on in the world and the familiar music, struck me awake, but not quite awake enough to get up and find the remote. I lay there for ten minutes or so listening to the headlines, feeling any enthusiasm and positivity I had for the world drain from my being.

I salute anyone who frequently and voluntarily watches the news. Although I think it is good to be aware of what is going on in the world, it really can bring you down. The list of awful events just reinforces this cynical idea I have in my head that there is a lack of cohesion between almost every force in the world. It leaves you feeling certain that we’re all doomed, and rightfully so. It is a feeling that I just can’t face when I’m already wrestling with the negative effects of chemotherapy. After those ten minutes, I mustered up the energy to push my body off the sofa and looked around the room to find the remote. I saw it on the other sofa. As I pressed the off button on the remote and deadened the life from the TV, I breathed a sigh of relief. Not today, I thought to myself. I’ve got my own battle to focus on. My battle against sleeping every second of every day. I’d been losing it that day.

It made me wonder whether news readers have to compartmentalize themselves from the things that they are reading every day. When it is your job to read that these 50 people died here and that this war rages on there and that there is a potential famine on the horizon in this country, do you just read the words and not process their meaning? Perhaps they are too focused on getting through the thirty minutes that they are on air to really consider the meaning of what they are saying. Maybe they attend parties and roll their eyes as everyone expects them to reel off line after line about how terrible that flood was last week, and how the death toll rises with every day that passes. The whole world becomes work to them, as everyone assumes that their favourite pastime is to discuss the headlines they report every day. A little like expecting an accountant to want to do your year-end accounts at a party because they must have gotten into accountancy as it was their passion – right?

Like the imaginary news reporter I have created here, I find myself struggling to consider the going-ons with chemotherapy this time around. During the first week, it was because nothing was really happening. I had my 30-minute infusion at the hospital and was surprised to learn that it really is just that – 30 minutes of infusion, then home. It sounded too good to be true, so I couldn’t believe it before I saw it with my own eyes. During Folfirinox, the chemotherapy I was on before my surgery, I would spend a good 5 hours at the hospital undergoing the infusion of various bags of chemotherapy drugs. This time, upon learning that I would only be required to do a single 30-minute infusion, and then take tablets every day, I couldn’t believe my luck. Week 1 reinforced this feeling that luck was finally on my side – it seemed that I’d sail through this treatment schedule and be clear of all of this cancer stuff. That is great for me, but it left me feeling dry in terms of content for the blog. There wasn’t much to report, and I don’t want to just continue blasting every nurse who takes blood from me every week; although, the nurse who did my blood test before my first treatment week did make my arm hurt for 3 days… These blood-suckers just can’t resist roughing you up sometimes.

The tablets that I have to take every day aren’t pleasant, but they felt much more manageable than an extended infusion at the hospital. I have to take 3 tablets, twice a day. I was getting into a routine of having the first 3 after my breakfast in the morning, then taking the second load after my evening meal. Because I had extremely bad mouth ulcers during my first phase of chemotherapy treatment, I’ve been conscious of not leaving the tablets in my mouth too long before washing them down with water. I’m sure that has no weighing on whether you get mouth ulcers from them or not, but I’ve convinced myself that it does, so the most stressful part of taking the tablets in that first week was getting the tablets down fast enough without nearly choking on the water. Other than that, it felt pretty simple. Onto week 2.

Week 2 is where the more ugly side effects started to reveal themselves. The infusion was all good again. “I feel like I’m being let out of school early because it’s been snowed off,” I quipped to the others sitting in the chairs around me in the hospital, as I picked up my stuff and left after another seamless 30-minute infusion. It genuinely felt like that; before I’d settled into reading a book or listening to an audiobook, the pump would be making its familiar alarm noise signifying that the cycle was complete. It catches me off guard every time – I just can’t believe it has really finished that quickly. Wonderful.

I was starting to notice that I felt a lot more tired in week 2. The chemotherapy tablets were starting to really mess with my stomach when I took them too, so I was starting to resent having to take them. I’d be eating my evening meal and trying to enjoy it, but every other bite came with another warning thought – “when this is over, you’re going to have to take those tablets again,” I’d say to myself. It puts me off my food as if it is the food’s fault. I know it isn’t, but it is nice to blame something. A few times, I’d totally forget that I needed to take them after eating, only remembering as I climbed into bed. That meant taking them on an empty stomach, which only seemed to make the symptoms worse. I’d swallow them and sit in anticipation as I wait for the sick feeling to come, the pains in the abdomen, the need to run to the toilet; it just wears you down.

The tiredness was getting worse too. I was starting to need twice as much sleep to be able to focus on anything. I’m working full-time now, whereas I didn’t work at all during the last 7 months of chemotherapy treatment. This cycle is definitely more manageable, so I don’t think that it is necessary to go off for the entire time again, but trying to do full days whilst on chemotherapy is hard in my experience so far. Your brain power is just shot – trying to focus on something for a long time is hard, and I get a lot of headaches on this new chemotherapy regime. When you have a banging headache, the last thing you want to do is sit staring at a screen. I’ve started having to take more regular breaks instead, and I’ve been starting a little later in the morning, but it all brings this feeling that you aren’t doing enough and that you should be forcing yourself through those tough patches. That brings a whole new world of anxiety to deal with alongside the already tough symptoms. It was about to get worse, though…

Towards the end of week 2, I started feeling something that I had been dreading. Mouth ulcers. My god if there is one thing I have learnt from going through all of this chemotherapy, it is that I absolutely hate mouth ulcers more than anything on this planet. Why oh why is my body’s default reaction to these toxins in my body to start punishing me even more in the most sinister and annoying way possible. I’d really love someone to explain to me why mouth ulcers are a thing, so I could simply shout “fuck you,” at that individual before throwing the glass bottle of Diflam mouthwash, issued by the hospital to help tackle said mouth ulcers, directly at the nearest wall, followed by a public protest of me licking up all of the green residue until none remained. The mouthwash doesn’t seem to do anything to actually tackle the ulcers themselves, it just numbs your mouth enough that you can’t feel how painful and annoying the ulcers are temporary. Although that relieves some of the symptoms, it does little to actually tackle the problem. I’ve lost faith in those little glass bottles issued by the hospital and engage in them with the same enthusiasm as a gazelle does a lion, as they catch eyes across the watering hole.

On Thursday, I went to Manchester to do some recording for the wonderful charity Pancreatic Cancer Action. They asked if I wanted to be featured in a video they are creating, to be released during Pancreatic Cancer Awareness Month – November, the same month I was diagnosed; another dark nod from the universe, grinning its ugly teeth at me. “Oh, Dan’s aware of pancreatic cancer,” I imagine the universe saying last November as it sat awaiting my diagnosis. Some people only think the universe is against them… I have proof that it is. Anyway, my wife Anna came along with me. Before our recording time, we grabbed some brunch together in a cafe, and I took my chemotherapy tablets. All was well, and the lunch was lovely. As we arrived at the filming location, I started feeling a bit worse for wear, and I was getting some cold sweats, and a sickness was building in my stomach. I was starting to feel bad. I kept my composure and made it through the recording. After that, my plan was to go to Huddersfield to see my best friend Luke. Anna had a work meeting, so she set up camp in the building where we had been recording. I grabbed the keys from her and made my way back to the car to grab my bag. By the time I got to the car, I was overwhelmed with the sickness. My head was spinning, and I was having to wipe sweat from my forehead with my sleeve. I meekly climbed into the back seat of the car, fashioned a coat into a pillow, and lay there with the car door slightly ajar in case I needed to throw up. I fell asleep like this, only to be woken up by Anna returning to the car about an hour later. It was official – I was back in the swing of chemotherapy. It was exactly how I remembered it.

So, as I started week 3 on Friday with the starting gun 30-minute infusion, which marks the start of a fresh week in the chemotherapy cycle, I was not feeling too enthusiastic. My family have been unlucky enough to bear the brunt of my negativity so far, as they are the main ones who are in earshot of my tired complaining, so I decided it was finally time to spread the weight of my complaints across a wider network. That network started with the nurses at The Christie, who I finally informed at length of the sickness I was getting when taking the tablets, and the constant tiredness I was experiencing. The tiredness seems like a pretty standard-issue symptom, and their remedy for that was more sleep… Reasonable, but my unreasonable brain wasn’t happy with it as a solution. I hoped they’d start dishing out speed tablets or give me an NHS-funded Costa card to start drinking coffee by the pint load – hospital orders, paid for by the taxpayer. For the sickness, though, they advised me to start taking anti-sickness tablets an hour before eating, and then see if that stops the sickness from arising when I take the tablets. They advised me that if this doesn’t work, they can issue stronger anti-sickness medication, as the one I am currently being issued is quite low-duty. I don’t like learning that I’m getting the low-duty stuff. Give me the good stuff; I’m not here to play games.

That was on Friday. Today is Sunday, and I find myself writing this after falling asleep on my bed for 3 hours in the early hours of the afternoon, after eating lunch and immediately feeling sick to my stomach for doing so. I think I’m going to need to make that call and get those higher-strength anti-sickness tablets. I’m still not sure what I’ll do about the tiredness, but starting Friday next week is my first rest week, so it should get better from there. All I need to do is repeat this 4-week cycle another 2 times, and then I’m free. 3 weeks of a single weekly 30-minute infusion, followed by tablets twice a day for 21 days, then a week off. It can’t be that hard right? I did double this length of time last time, on much more toxic chemotherapy. The mouth ulcers are still far better than they were at their worst last time, but they started mild then too… Time will tell, I guess.

Like my imaginary news reader, I find myself back at the mercy of my trade – regurgitating events on a page, and struggling to comprehend their meaning. Every second you experience a negative symptom, you struggle, but you understand that this is all part of the game, and there is little time to do much more than grit your teeth and push through to the next milestone, whether that be the next meal, infusion, or rest week. The words do little to alleviate the struggles because you’ve already wrestled your way through them. This is me living to tell the tale, and I’m still grateful for that, even if I do find myself co-existing with a legion of mouth ulcers. They did not have my permission to exist, and we shall never live harmoniously. I’ll continue drinking the Diflam mouthwash by the bucketload and, most likely, continue to be disappointed by the results.

Anyway, I’m going back to sleep. I’ve been awake far too long writing this.

Twelve Rounds with Folfirinox

9th June 2022 godley93Blog, Cancer, Chemotheraoy, Folfirinox, Health, Hospital, Lifestyle, Pancreatic Cancer, Positivity, Treatment9 Comments

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

20th May 202221st May 2022 godley93Blog, Cancer, Health, Hospital, Lifestyle, Oncology, Pancreatic Cancer, Positivity, Temperature9 Comments

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?

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…

15th May 202216th May 2022 godley93Blog, Cancer, Health, Hospital, Lifestyle, Pancreatic Cancer, Positivity, Recovery10 Comments

The Chemotherapy Diaries

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.

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

11th May 202211th May 2022 godley93Blog, Cancer, Chemotherapy, Death, Hair Loss, Health, Lifestyle, Pancreatic Cancer, Positivity4 Comments

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.

The tweet I never wanted to write. The time has come to say goodbye. 5 years to prepare, doesn’t make it any easy. I’m under hospice at home care, & I’m spending my time surrounded by my family. Please buy me a 🍷 to see me out and raise vitial funds. https://t.co/AztN5FziLR ❤️
— Deborah James (@bowelbabe) May 9, 2022

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

30th April 20221st May 2022 godley93Blog, Cancer, Chemotherapy, Health, Hospital, Lifestyle, Pancreatic Cancer, Recovery6 Comments

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.

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

19th April 2022 godley93Blog, Cancer, Chemotherapy, Covid, Health, Illness, Lifestyle, Pancreatic Cancer, Treatment14 Comments

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.

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!

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The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries

The Chemotherapy Diaries