Chemotherapy

Goodbye, Portner in Crime

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The Port, Taken Shortly After It Was Put In – November 2021

You ever wonder how deep you could sink into nothing at all?

There are always multiple ways to frame situations in life. When the oncologists told me straight after my first ‘all clear’ scan that I needed to have my chemotherapy port removed from my chest, I could have chosen to take this as a positive. Surely they wouldn’t be requesting it to be taken out if they had any major concerns about my health. A few people I know have responded with this logic upon learning that the oncology staff want to schedule taking the port out, and I’m happy for them. I, however, am not one of them. To me, them telling me that my port can be taken out is them alluding to the fact that if the cancer comes back, I’m totally fucked and the port won’t make any difference whatsoever.

Having a port in your chest also comes with some increased health risks, so I think the actual reason they take it out is far simpler and more straightforward – it is just the process. If you aren’t on active chemotherapy, and the port is not being frequently ‘accessed’ (that is medicalese for a needle being plunged into the port in your chest, before pumping things into it; they aren’t small needles either), then dry blood can cause issues with it, causing the line to become useless. The device also increases the chance of a blood clot occurring, but only by a very small percentage. When I got it put in, the nurse putting it in told me that in other countries they don’t have a policy stating that they need to come out again once inserted and that they tend to leave them in for the rest of that person’s natural life. That sounds lovely. I bet those countries have more sun than we do in England, too.

To give some context, in case anyone reading this feels like they didn’t get the memo on what these ‘ports’ things are… A ‘port’ is a Portacath. It is a small silicone device that is inserted under the skin in the chest, that is connected to a line. When they put it in, they insert the line into a major vein in the neck, running it under the skin from where the silicone device is, north of your chest and into the vein. You can actually see it through the skin.

They are put in with local anaesthetic administered to the neck and chest area and I can confirm, it is pretty uncomfortable. Nowhere near as uncomfortable as having an endoscopy, but this isn’t Medical Procedure Top Trumps. They’re all terrible in different ways. I wrote an account of the procedure in an old post, actually, so my more dedicated and long-standing readers may already be aware of that, but it was ages ago. I’ve also written about my experience of having an endoscopy too, but that is a memory that is deeply entrenched in a dark corner of my psyche, and only comes out to play when my mind feels like re-traumatising me in the form of a bad dream or a rough mental patch. I have spoken to the odd person about their endoscopy and they’ve told me that they didn’t find it too bad… Although I respect these people tremendously, they really do need to have a mental evaluation to make sure that they are Ok. Despite an endoscopy being required to diagnose me, which makes me enormously grateful for its existence, it is, essentially, a torture method. I don’t fully remember the whole thing due to the sedative they administered to me before starting, but I remember black bile leaking out of my mouth, and the sensation of choking on my own sick whilst I struggled to breathe. Where else would you hear those kinds of things? Correct – a prisoner’s account of being tortured!

I was supposed to have the port taken out straight away once I was told that there were no signs of cancer anymore, back in February, but I asked if they could wait until after the next scan. It felt like tempting fate to take it straight out, and I was suspicious that the staff knew something that I didn’t. Why were they so sure I wouldn’t need it again? Am I actually fine now? No one will tell me I’m fine – I keep being told that I have to “live with cancer” for the next 5 years. Turns out, oncologists just really hate telling people with pancreatic cancer that they might survive, and like to adopt phrases such as “it’s a really difficult cancer.” I know that it’s a difficult cancer – I had it / have it / am living with it / am sick of thinking about it – I’ve seen plenty of things alluding to the difficulty of this cancer. I don’t actually know where I’m at with it. But I’m definitely living with it in some way – it won’t leave me alone.

Well, today was the fateful day. The port was coming out. I had already rearranged the appointment once, as I received the call about scheduling it approximately 10 seconds after leaving the oncologist’s office after being given my scan results. It was in that very meeting that I had reminded the oncologist that it needed to be taken out, so either the schedulers are mediums or the oncologist pressed his panic button under the desk, which must flash an emergency light in the scheduler office, allowing him to bash out my name in morse code for her to then find me on the system and call me to make the appointment. They also might just have had a working phone system, and the oncologist called them straight away, to ensure that it was scheduled before anyone forgot. It was probably the Morse code theory.

I chaotically said yes to whatever words came out of the scheduler’s mouth. Then, upon hanging up, realised that the time I had scheduled did not agree with my work calendar whatsoever, and that I’d need to reschedule. The problem was, this was Thursday and I was off work on Friday, and I’d just received some positive scan results. So I did what any respectable person would and waited until Monday to do anything about it, just over 24 hours before my appointment time. They were very accommodating, luckily. They had every reason not to be.

I’ve learnt to be a certain way before these types of events. It’s somewhere between tentative and apathetic. The resulting state is one where I waltz through the day or two before the procedure, never fully thinking or worrying about it, but never not thinking or worrying about it too. It is an ever-present threat which lodges itself in the brain. I know it won’t hurt, but it isn’t that which causes me to linger on it so much. Who wants to have their chest cut open and a device, which is connected to a major vein, yanked out? The same group of people who think endoscopies are bearable – of course. The whole thing just gives me the ick.

Getting it out is a different affair to having it put in. When it was put in, a plastic piece of material was used to stick the side of my head to the table facing the opposite way from the procedure. This time, a plastic pad was stuck to my chest, allowing the nurse to operate whilst keeping it as hygienic and mess-free as possible, but I could have, if I wanted to, picked my head up off the table and looked straight at what was happening just 10cm from my head. Of course, I didn’t, as that would have been an instant pass-out for a weakling like me. But I could have, and that felt empowering, when I eventually thought about the fact that I could have done that, half an hour after the procedure had finished. I didn’t have the guts to think about it during the procedure – I was bracing for dear life.

Last time, when it was inserted, I had to have a series of injections that were really painful to kill off the feeling in the area, but this time it was sprayed with something. Initially, it gave a cool sort of sensation, which then advanced to a sting, then, nothing. Perhaps the nurse injected something afterwards, but I didn’t feel it if she did. What I did feel was a couple of sharp twinges early on deep in my chest, shoulder and arm. I couldn’t tell what she was doing, but at one point, one of them made the right side of my body flinch involuntarily, and I started to profusely sweat. I let out an awkward sound, and she confirmed that I couldn’t feel any pain, only some “disconcerting poking”… It didn’t make me feel better. She was doing her best to keep talking to me, and I was impressed with her commitment to trying to distract me, but I was laying back with my eyes closed at this point, and wasn’t really responding.

After 5 minutes or so, most of the uncomfortable feelings had gone. I assume that she had done the gross part at this point, and was just doing the admin work – the stitching of the wound and whatever other things she fancied doing whilst in there. Taking a look at my tattoos from the underside of my skin, dropping a little M&M in there maybe – disinfected, of course. The whole thing probably took 20 minutes max. I sweat so much that I felt concerned about it. Should I be embarrassed? I made some awkward remark about it. “I sweat more during that than I have for the rest of the year so far,” I mocked, trying to address the elephant in the room, and she peeled off the material that was sprawled over the bed. During the mop-up chemotherapy, I was sweating so much that I started wondering whether its purpose was to try and sweat the cancer out rather than kill the cells themselves. It is still a running theory of mine.

Now, as I sit on the train back to London writing this, the area does feel quite sensitive when I move it. I’ve taken paracetamol, which I’m convinced doesn’t do anything, despite having experienced what the liquid form of it does when administered directly into the bloodstream – it’s a totally different drug when it is administered like that. The tablets don’t seem to do anything. I’ve got a bandage on it which has to stay there for a week; once that is over, I get to take it off and pull off the paper stitches – fun! Something to look forward to, I guess.

I had a bit of a strange weekend mentally. Friday night I had a minor panic attack in bed, and tried to wake my wife up, but she was too asleep to care. Totally fair enough, it was 01:00 in the morning. I managed to navigate it, but it was a little weird. All of a sudden, as I lay there trying to fall asleep, I started having some really dark thoughts. It genuinely felt inescapable and for a second, I had no idea what to do to make it better. I grabbed my dog, Lucy, and held her in my arms whilst she absently groaned at me. She nuzzled her head into my armpit as I lay on my back. It made me feel a little better, and I reminded myself that I’ve been through a lot worse over this past year. I’m actually cancer-free right now – which is an amazing place to be. It is a place that I never thought I’d get to this time last year when I was receiving my end-of-chemotherapy scan results, and the surgeon was telling me that he didn’t think he would be able to get rid of the tumour.

Holding Lucy did help eventually, and I fell asleep. That temporal period of panic has stuck with me, though. It frustrates me that I have more episodes like this now I have some semblance of hope, as opposed to when I was in the middle of treatment and felt utterly hopeless. Trying to move into the rhythm of having a normal life is just difficult; I don’t know why, but it just is. I still don’t truly believe I’ll actually survive. I’m sure it’s to do with that. I have to force myself to acknowledge that it is a possibility now, even if it is still an uphill battle. How long can I spend worrying about something that hasn’t even happened? I find myself diagnosing myself with a reoccurrence only a few weeks after a clear scan, whenever I feel any symptom whatsoever. I’ve been moved onto 6-month scans. Surely that’s a good thing, even if the oncologists don’t specifically say so?

The weather is getting better and I have a busy few weeks ahead, so there is plenty coming up that will help to distract me, it’s just about maintaining the energy levels to enjoy it all and not totally crash. Now I’m portless as well as cancerless, maybe I’ll start to accept the distance that is forming between me and my diagnosis, rather than longing after it in some weird, backward way, where I feel more vulnerable with the more that time passes. The surgeon’s voice keeps ringing in my head loud and clear – “Not many people beat stage 3 pancreatic cancer,” I remember him saying. I too easily forget the other thing he said to me – “you have gotten this far against the odds. There’s no reason to believe that you won’t continue to beat them.”

Waitin’ Round to Die; Anticipating More Scan Results

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The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?

Mouth Ulcers and The End of Chemotherapy

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The Chemotherapy Diaries

Bedbound and Down

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

godley93, , , , , , , , 6 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

godley93, , , , , , , , , 8 Comments

The Chemotherapy Diaries

Me and Lila, My Mum’s New Puppy

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.

November 8th, 2021

godley93, , , , , , , , 17 Comments

The Road to Recovery

In Jordan, With the Wonderful Bride and Groom

It feels like a lot has happened since I last posted. I’ve been abroad for the first time since before the pandemic, I’ve completed the first cycle of chemotherapy and have now started cycle 2. I also marked the 1 year anniversary of my cancer diagnosis on November 8th – a scary yet momentous feat. Unfortunately, I didn’t manage to celebrate it with the same bravado that I was throwing at the cancer diagnosis this time last year.

The anniversary is a strange one. We didn’t throw a party with a huge ‘1 Year’ banner, or bake a cake with ‘Congratulations’ written across it. What is the appropriate way to celebrate your 1 year anniversary since being diagnosed with cancer? If it was my 1 year anniversary of getting rid of cancer, I may feel differently. That isn’t the case, though. This period has conjured up a mix of emotions in me, most of them negative. I wish I could shake those feelings, but I’m struggling to.

On the night of my diagnosis in King’s hospital, I remember sitting awake with Anna asleep next to me. As she slept, I sat staring at the ceiling. Throughout my life, I had been prone to thinking about the future and what it may hold for me. When I was younger, I would sit and wonder what I’d be doing a year from now at that exact second. In school, I would wonder if I’d have a new girlfriend or if I’d have done well in the end-of-year exams. As I got older, I thought about it less, but sometimes I would still entertain those thoughts. While living in Philadelphia, I’d wonder if I’d still be there or if I’d have gone back to the UK. It was a way of gaining some perspective on what was going on in my life, and it helped me appreciate the things that I enjoyed or didn’t enjoy about my current circumstances. The things that I fantasised about being different would usually be things that weren’t particularly working for me, and the things I hoped would have stayed the same, or developed further, were things that I was feeling content with.

As I lay staring at the hospital ceiling on the night of my diagnosis, I wondered whether I would even be alive a year from that moment. If I was, would I be happy that I was still alive? What if the cancer was out of control, and I was navigating a dark road to my ultimate end. I remember taking a deep breath, trying to be quiet as possible as I sat crying with Anna beside me, not wanting to wake her up. That night, we had expressed we had each other and that whatever happened next, we needed to spend it together and make sure we were happy. We’ve kept that promise so far.

It is strange being where I am now. The operation went far better than expected, which I am incredibly grateful for. That doesn’t change the fact that my life is a lot different now, though, and it will never return to the way it was. Without a pancreas, I am now diabetic in a way that I believe is much harder to manage. As far as I understand, the pancreas is not only responsible for producing insulin and regulating the body’s blood sugar levels, but it also plays a key role in regulating the hormones which control these processes. Without a pancreas, I have less control over those hormones. Some days I just cannot get my blood sugar to play ball at all. Some nights, my low blood sugar alarm will go off multiple times. Every so often, I’ll sleep through the first alarm and only wake up when I feel incredibly light-headed, with my legs shaking and a cold sweat starting to form on my brow. Sometimes, I’ll then sit there and wonder why the chemotherapy is deciding to wreak havoc on me at that moment before realising that my blood sugar is low. I’m still very new to diabetes, so the thoughts don’t always come naturally to me. I’ve gotten very good at having a broken night of sleep, and often have to eat fruit pastels at 4:00am to get my blood sugar up. Some people may think that is heaven, but it is far more annoying when you actually have to do it. I also have to clean my teeth after doing this, or I imagine my teeth rotting through the night and it stops me sleeping. Some nights I have cleaned my teeth 4 or 5 times because my blood sugar keeps going low.

I’ve tried to write a post about the anniversary of my diagnosis about 6 times over the past few weeks. The first draft was almost fully formed, and I was ready to post it on the day of the anniversary, but as I read through it, I didn’t feel comfortable sharing it. There was a lot of emotion in it, and I could tell that my head wasn’t in a good place. I wasn’t sure it was the sentiment I wanted to put out into the world for critical review. A few days later, I tried to rewrite it, but I found myself pulling every word I wrote to pieces. For some reason, I was being extremely critical of what I was writing. The language was too flowery, or I was dancing around my central point too much. At one point, I deleted 5 drafts at once, not even bothering to read their contents before doing so. The experience has really affected my motivation to write.

Perhaps linked to this self-critical attitude is my mentality toward starting the second cycle of chemotherapy. I started again on Tuesday, 15th November. The day before this, I had to go and do my blood test, as is standard before every treatment day, to ensure that the body is ready to handle another dose of poison. I sat in the waiting room at the hospital, keeping an eye on the appointment board and dreading my name appearing. Once my name was called, I made my way down the corridor and into the bloods office. I hung my coat up and sat down in the chair. “How are you doing today, Daniel?” the nurse asked me. She wasn’t ready for what was coming; I don’t think I was. The next 5 minutes was taken up by me talking about how I’m worn out, that I’m reaching total mental fatigue with the treatment, and that I don’t even feel confident it’ll increase my chances of survival, as that was what the oncologist had warned me about mop-up chemotherapy when he introduced me to the idea. They have not done the research to prove or disprove whether it was useful, but they tend to do it anyway, he had explained to me. It was the perfect distraction from the needle being pushed into my vein, but it highlighted that my head was not in a good place. The nurse was lovely and understanding. She punctuated my rant with encouraging comments like “you’re so close to the end” and “everyone goes through tough periods with treatment.”

One of the sticking points for me around the anniversary has been that a year ago, I genuinely didn’t believe that I’d survive this cancer. Now, I have a better shot at survival than I ever could have dreamt of then, so why am I responding like this now? I feel like I had more positivity to offer myself last year, when everything felt bleak and the road to recovery seemed insurmountable. I told the nurse that I felt like a spoilt child complaining about the position I’m in after having a successful surgery and being so close to being classed as ‘in remission’. It is a privileged spot to be in and one that the majority of people with pancreatic cancer don’t get to experience. I’m sure that I read recently that 50% of people diagnosed with pancreatic cancer are dead within 3 months of diagnosis; thinking about that just makes me feel even worse for complaining about the situation I’m in. “You can’t control the way you feel, Dan. Don’t be so hard on yourself.” I knew that the nurse was right in saying this, but it did little to pick up my mood.

The week before I returned to treatment, I had been in Jordan on holiday. One of my best friends is Jordanian, and we went over there to attend his wedding. We spent 7 days in the country, mostly in the capital Amman, but we also travelled around a little bit. Of course, we went to see the awe-inspiring Petra, but we also spent a night in the desert at Wadi Rum, and another night at the Dead Sea.

The trip had been causing me a fair amount of anxiety in the buildup to it – it was the first time I was going abroad since before Covid but, more importantly, since being diagnosed. Now, when I go abroad, I have a truckload of drugs to take with me, as well as my various needles used to treat diabetes. It was too easy to envision a situation where I lose all of my stock of Creon, a critical drug I need when eating, or leave my diabetes pens somewhere, or the airline loses my luggage which contains all of my backup stock. I fantasised about going through security in Jordan, only to be stopped and accused of bringing in illegal drugs. Of course, I waltzed through without anyone even batting an eyelid at me. You are your own worst enemy.

Jordan contains many sites that are incredibly old, with amazing structures that have stood for millennia. Some of the artefacts that we saw in the museums were nearly 4000 years old. It is mind-boggling. As I stood in a small museum on the site of the Amman Citidel, I observed a small skeleton through the glass. The information card in front of it stated that it was a child’s skeleton and that it used to be tradition, if your child died, to put their corpse into a jar, then keep it under the floor. I had one of those moments where all of my concerns and dissatisfactions with the world felt infantile and pathetic; I’m only bones, after all. It used to be common for children to simply die during birth, along with their mother. Why am I so precious about my life? What do I even add to the world? I haven’t cured any individuals of disease or given up my time to help those in need. It did little to improve my mood, but the whole experience was inspiring. I’m sure on another day I would have taken a very different message from it, but I was feeling egotistical and sorry for myself that day. It was more fuel to throw on the ‘woe is me’ fire.

One of the most amazing things we did in Jordan was visiting the Dead Sea. It is quite a beautiful shade of blue, and as we sat in the car driving along a road which framed it, I couldn’t help but be taken in by its glimmer. The sensation when you are in it isn’t like anything I’ve experienced before. It pushes you upwards, so much so that if you lean to one side and throw off the balance of your body, it will force you onto your front. We had Googled whether any life existed in it earlier that day and learnt that life cannot be supported in it due to its high salt content. It is hard to believe that a body of water that large contains no life at all. My hatred of the sea is due to the fact that I know there could be things lurking around me in the murky water; it makes my skin crawl. As I floated in the Dead Sea, I couldn’t kick the idea that there was a leviathan lurking at the bottom of that lake, waiting for the day that Daniel Godley, from England, made his way into the water for a casual dip. No Leviathan ever showed up. Perhaps they heard me saying to Anna, “we’ve got to come back next year,” and decided to wait until then to reveal itself to the world, as it ate me up. I did lose my wedding ring in the water too – perhaps the offering was enough to buy me some time. I made the point to Anna that I am now single, all before the big wedding that we were due to attend at the end of the holiday – what a result! She wasn’t too impressed.

The Jordan trip was mostly amazing, but there were a few incidents which kept me anxious. I’m prone to random (incredibly painful) attacks of abdominal pain and stomach issues. Of course, one of these incidents came as I navigated the old tombs of Petra. The toilets at this site are far from good. I think that referring to them as a sleight against human decency is a more accurate description of them. Despite this, I was forced to sit in one of them whilst I gagged into a dry toilet basin, piss surrounding me on the floor and a man trying to sell ‘ancient rocks’ within earshot, on the outside. The whole scene did little to make me feel better, and in that moment, I swore that when I return to my house in England, I’ll never leave it again.

Outside Petra

There was another day in Amman where we had walked around the markets for a few hours and were now ascending a hill to see a famous street called Rainbow Street. As we made our way up the stairway to heaven (it went on as far as the eye could see and felt genuinely insurmountable if you dared look up as you climbed it), I started to get bad stomach pains. Once we got to the top, I decided that I needed to find a toilet and fast.

We went into a small coffee shop and asked if there was a toilet. The man warned me that it wasn’t in good shape but agreed to let me use it. He unlocked a door to the side of the counter and didn’t make eye contact with me as I entered. He knew he was stitching me up; he had tried to warn me. I shut the door behind me, then turned to look at the room. The sink was not connected to a drain, and there was half a mop was lying across the floor (who knew where the other half was). The whole room was thick with the smell of cigarette smoke, and everything was damp. As I lifted up the toilet, I took a deep breath. The water, if it indeed was water at all, was black, and there were 5 cigarette ends floating in it. That explained the thick stench of cigarette smoke, at least. I immediately dropped the toilet seat shut and decided that I’d rather shit myself than spend another second in there. I ran out, passed Anna, who was standing ordering a drink, thanked the man, and proceeded to run around Rainbow Street, looking for a respectable alternative. Luckily, I found one.

I think the trip to Jordan has added to my mental burnout now with the treatment. My oncology team had agreed to give me an extra week off to allow me to go on the trip, so I’d had 2 weeks off treatment, as opposed to the 1 week that was in the plan. It took most of week 1 to get rid of the mouth ulcers and stop feeling a constant level of sickness. A little like a school child who has been off for the summer holidays and is now resentful that they have to return to school, I feel resentful that I am back on treatment. On top of that, I really do feel one of the worst that I have ever felt during chemotherapy. Every morning I struggle to get out of bed, and I am regularly getting migraines. After eating, I often feel sick, and there is an iron taste of blood which lingers in my mouth after I take the chemotherapy tablets. I try brushing my teeth, and it relieves it for a while, but then the taste fights back, and I am left with an irony, mint taste that makes me feel even worse.

When I went for treatment on Tuesday, I couldn’t help but think about the needle being pushed into the port in my chest. The whole thing made me feel anxious in a way that it hasn’t since I first started chemotherapy a year ago. When you look at the needle in the nurse’s hand, it looks quite long. I’d learnt to not focus on it and to look away, but here I was, driving to chemotherapy, fantasising about the size of it. I thought about the sharp shot of pain that bolts through the chest plate as it enters the skin, then the momentary flash of heat that seems to rush through your body. I didn’t feel ready for it. In my mind, I contemplated how I could get out of doing the treatment. Perhaps I could tell them that I have Covid. I knew that it would just be delaying the inevitable, though, and that I’d only be deferring the uncomfortable for another week. It was going to catch up with me eventually.

I’m trying to remember how broken I probably was a year ago from now, yet how much better my attitude was then. I would have been 1 or 2 sessions into Folfirinox with an unknown outcome and an uncertain future. Part of me thinks that I should start going back to the blog posts that I wrote a year ago today to remind myself of how much better my attitude was then under much more difficult circumstances. The thing stopping me is that I worry I’ll only focus on the things that I don’t like about my writing and that it won’t actually help me gain any perspective at all. I can’t stop thinking of the quote – ‘Life is wasted on the living’. When I was certain I was going to die last year, I felt more energised and motivated to enjoy life than ever. As soon as I feel more comfortable in the situation, I find myself moping around and complaining about my treatment schedule, and taking every bout of illness to heart, as if it is the end of the world.

The fact is that I’ve been doing this for a year now, and although every treatment step is designed to ultimately make me better in the long run, they all actually make me feel worse in the short term. Every session of chemotherapy leaves my body more run down than the last; the surgery has taken months to overcome, and in many ways, I am still struggling to fight back from it. I felt well enough to run throughout my original sessions of chemotherapy, but I haven’t managed to run at all since the surgery. There has been very little respite in the process. The burnout is becoming tangible. I feel like a drag to be around. I want there to be a button I can press to fast foward the next 2 months. Such a thing doesn’t exist, and I am conscious that you should never wish your life away, so I’ll keep pressing on. Just another 6 weeks or so, then I can focus on getting on with my life – so long as the post-chemotherapy scans don’t throw any curveballs in the mix… I can’t be positive without countering it with something negative at the minute, can I?

Chemotherapy Returns: A Tale of Tiredness & Ulcers

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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.

The Last Throes of Treatment

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Lucy On Her 1st Birthday

From now on, I think October will always be a weird time for me. It is that period when the days start getting shorter, and all of the enthusiasm of the summer sun is waning. I didn’t use to mind the shorter days; winter was actually my favourite time of year when I was younger. Me and my friends used to hang out together when we were teenagers in the local parks, and it was fun when it was darker. You felt inconspicuous. Nowadays, I realise that we probably looked intimidating, but we mostly stayed out of people’s way. There wasn’t a lot to do in the village we’re from, so standing around in parks felt like a pretty normal pastime.

Unfortunately, October is now known to me as the month where I was in and out of hospitals, trying to get the sudden sickness that had come over me diagnosed. It started out with me reluctantly going to A&E, knowing that it’d take away an entire evening of my precious life. Then it extended to a week of blood appointments and scans. Then a referral to another hospital with a more specialised Hepato-Pancreato-Biliary (HPB) unit. After 3 weeks of this, I’d been told that I had cancer but that it was a very slow-growing and non-aggressive cancer, which felt comforting. Another week passed; the diagnosis was wrong. By the start of November, I was learning the true extent of the issue. Pancreatic Cancer. You never think it’ll happen to you, but here I was. It was happening.

I’d be lying if I said that it does not feel significant to be sat here a year on. I remember attending the hospital throughout October and wondering when it was finally going to be over. I remember the first time I picked up a prescription for a drug called Creon – the enzyme replacement treatment that I am now all too comfortable with. At the time, the specialist told me that it might help to reduce the amount of pain I was experiencing in my abdomen. He told me to take one before and after each meal. I had no idea that I’d end up taking around 20 – 30 of those tablets a day. At the time, I think they believed my pancreatic functioning to be a little low, meaning I only needed a small amount of enzyme replacement therapy. Now, I have no pancreas at all, so all I have is enzyme replacement therapy. I constantly have to battle with the local pharmacies for more of the drug because I use so much of it, and they seem reluctant to stock too much of it. Perhaps the town I live in is full of people suffering from pancreatic issues. Maybe they should start testing the water and sorting out the issue – there isn’t enough Creon in this town for all of us. I hope I get priority as the flagbearer of pancreatic cancer (a title I have definitely assigned to myself and do not deserve based on any reasonable definition of ‘merit’).

It didn’t even occur to me last October that I might end up a diabetic, need major surgery, or have to do 6 months of chemotherapy. I was still assuming that it would be a quick fix – even if that was some sort of minor surgery. You don’t think you’re likely to have cancer when you’ve been running marathons like I had been doing throughout September. You just assume that people with cancer feel different, that their bodies can’t cope with the stress of training for more extreme fitness events. Unfortunately, they can. Bodies are resilient. So are human emotions of denial, especially where that denial can preserve one’s sense of normality. Going to the hospital was a concrete admission that something was wrong. I told myself that it was a food intolerance causing me pain. I told myself that it was minor and that it didn’t require further attention. The few times I did try and get diagnosed, I felt like I was making a mound out of a molehill; I wasn’t taken particularly seriously by any of the medical professionals I saw. That reinforced the feelings of inadequacy – inadequate to be taking away these people’s precious time; they could be seeing someone who really needs the attention, someone with cancer.

So, October drags on, and so does the treatment schedule. I’ve been back at the hospital to do bloods today before starting the mop-up chemotherapy tomorrow. The new treatment schedule is one consisting of 4-week cycles – 3 ‘on’ weeks and 1 ‘off’. On the on weeks I have a 30-minute infusion at the hospital and have to take chemotherapy tablets twice a day. On the ‘off’ weeks I forget about hospitals and get on with my life…until the next cycle starts, of course. The whole cycle repeats 3 times, and then I have to do another scan. Assuming that scan is clear, I’m then a free man! Until the next scan, then the next scan, but you get what I mean…

It means that The Chemotherapy Diaries series is going to have some new life breathed into it. Back by popular demand. I think I’ve probably had some of the biggest compliments on the blog from that series. Maybe the feelings that chemotherapy inspires are the exact point where cynicism meets defeatism, creating the perfect environment for comedy. Time to pick up my sick bucket and pull up my gloves again; the tingling fingers of a chemotherapy patient, tapping away on their phone, writing their blog where they moan about everything and don’t relent over anything. Oh please dear nurse, take more of my blood for I have no need for it. Shakespeare would have invented 500 words in 12 chemotherapy sessions; I barely managed to produce the ones I know. I usually sat with my head between my legs and my headphones on full blast. It was comforting until I got the inevitable tap on the shoulder from the nurse – “Are you sure you’re ok?” They’d say. “I’m fine. I always sit like this,” I’d respond, not moving my head from its brace position, still staring into the eternal void I’d created between my legs. Lovely, endless void, we meet again. That was always during bag number 2 – this time there is only bag number 1, and it’s only 30 minutes.

The cycle does sound much more manageable. It’s going to be interesting to see how much the mop-up chemotherapy affects my energy levels. They’ve been good recently – I’m working full time again, taking Lucy on regular walks and waking up relatively early without feeling devoid of all energy. The blog has been taking a hit now that I am working full-time again, but I’m figuring out how to create space for it in my more normal life. I’m finding myself staring at spreadsheets again instead of fawning over this word or that phrase. It’s been good, actually. I forgot how much personal triumph you can feel from working. When I have an idea about how to sort out a data problem that my team is having and I write the formula, then watch as I execute it and all problems are temporarily resolved in the world, I feel a rush of adrenaline. “This is living,” I think to myself as I take a sip from my coffee. Life is simple sometimes – Microsoft Excel offers refuge in the form of linear problems with linear answers. Dealing with chemotherapy doesn’t feel quite so linear.

Even the sickness I get after eating has been reduced. It is still a problem, but less so. Sometimes I manage to eat a meal without getting any sickness at all, though this is rare. The sickness is much more manageable even when it does happen. It’s more like an annoying voice in the back of my head telling me “you feel a bit bad after eating that sandwich for lunch, don’t you, Dan? Maybe you shouldn’t have put so much cheese on it, you pancreasless weasel.” Come to think of it, I should change my Twitter handle to Pancreasless Weasel. My Twitter account is far too serious currently.

The excitement at finding data solutions is yet another sign that my life is actually returning to normal. It’s crazy – I truly didn’t believe that things would ever get back to this place, or anything like this place. Despite knowing that I have another 5 years of regular scans before I can truly breathe, it feels like space is being created between the cancer and myself in my life. I’m starting to feel like someone who can talk formatively of cancer, not as someone suffering at the hands of it. No matter what happens in the next 5 years, I’ve gotten to a place which I didn’t even dare to dream of a few months ago. In the last 12 weeks alone I’ve come to be at peace with being diabetic, even finding the process quite fun. It is like a game that you are constantly involved in, yet have no choice over your involvement in it. It is similar to life itself in that regard, I guess, but the diabetes game comes with an app that has a nice graph and lots of statistics about how well you’re doing. Life doesn’t come with such an app. Perhaps I’ll try and create one.

Something that does feel somewhat significant is the fact that Lucy turned 1 at the end of September. We got her at around 8 weeks old, so the countdown is on to the 1 year anniversary of us first meeting her. She has enriched our lives so much. You really do see the best of the world when you spend time around a sausage dog. Seeing their impossibly long bodies bounding through the shortest of grass, yet making it look like a fully grown cornfield, is a comedy that you cannot really recreate any other way. I watched an interview with Christian Bale yesterday where he said “The best actors are children and animals because both don’t give a shit what anyone thinks about them,” and it is so true of Lucy. She is unapologetic in her approach to the world. I’ve spent so long feeling every negative and positive emotion under the sun this year. Everything has been intensified by what has been going on with the cancer. With a sort of end in sight, I’m beginning to get more perspective on everything and feel a sense of relief. As I start chemotherapy again tomorrow, I do so with a genuine end in sight. That certainly makes it easier. So does watching Lucy go about her life without any regard for the bigger picture. There is only this impulse or that desire. You can find plenty of lessons in watching a dog go about their day-to-day life of eating, pooing, sleeping, and repeating. Someone should turn that into a t-shirt or something.

A Not-So-Impressed Lucy

It doesn’t make the month of October any easier to deal with, though. I will forever blame this time of year for punishing me as it did last year. I remember an unusual period of hanging around the flat after spending whole days at the hospital, not knowing what the future was going to hold for me, getting increasingly frustrated at the lack of concrete answers, and the growing anxiety that was building. Who knows what I was doing exactly 1 year ago this second. In a way, it is easier now that I understand the extent of the illness and that I have been through so much to try and fight it. Better the devil you know than the devil you don’t. I’m married now, and I’ve got a little not-so-puppy puppy that has just turned 1. Life is good, so let’s hope this next bout of chemotherapy is good too (and generates some juicy content for the blog).

Oh, and my mum has a little puppy sausage dog now too. So that’s got to generate some good pictures for the blog, right? Lucy keeps humping her which is a little disturbing but further proof that dogs really just don’t give a shit. She’s 9 weeks old, Lucy. Tone it down a bit…

Lucy, Meet Lila

Sonder

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‘The profound feeling of realizing that everyone, including strangers passing in the street, has a life as complex as one’s own, which they are constantly living despite one’s personal lack of awareness of it.’

Wikipedia, Definition of ‘Sonder’
Manchester Royal – 10 Days Post Surgery

I’m sure the title of this blog post will be met with glee by some of my closest friends, so I may as well get the story out of the way. When I was 18, I learnt the word ‘Sonder’ for the first time. I can’t remember where I heard the term; I have a suspicion that a band I liked put out a song with that title, but I’m not sure what band and I don’t have any recollection of the song itself. I quickly looked up what the word meant, and its definition immediately struck a chord with me, as it perfectly framed something that I had thought about many times but had never managed to properly define. It is such an interesting concept and one that still occurs to me frequently.

The most recent time it occurred to me was when I was sitting in a traffic jam earlier in the week. There were roadworks on, and some temporary traffic lights were in place to control the three-directional traffic. In a classic case of ‘The World vs Me’, I watched as the lights seemed to let every car come through from the other directions, then only allow about 5 cars through from my direction before turning red again. I was getting wound up despite having nowhere to be, and it all was pretty inconsequential whether it took an extra 5 minutes for me to get through these lights and get home. At some point, I became cognisant that I was being stupid, and I started telling myself that it did not matter and that I was one of many people who were experiencing the exact same thing at that moment. Then I started to think about the fact that someone else might actually be late for something in that queue – a spouse’s birthday party, picking their child up from school etc. Maybe someone was sitting in that queue after having a horrible day at work and knew they were returning home to an empty house, after recently getting divorced, or some other miserable scenario. I started romanticising the idea that my life wasn’t so bad, and that someone else in this queue was probably dealing with something far worse than me, and that I should use this time to just relax for a few minutes. It helped me gain some perspective, even if the scenarios were completely imaginary. I actually managed to forget that I have cancer for a few minutes, and was even claiming to have an enviable life because I didn’t have anything to get annoyed at these temporary lights for, other than the mild inconvenience. If only that was the measure of success in the world… I’d be a bona field Buddha by the now if it was.

Anyway, back to the story. Young, 18-year-old Dan, was totally in awe of this new construct that he had discovered. So what did he do? He got it tattooed across the right side of his chest… because why wouldn’t you do that? The word ‘Sonder’ awkwardly lay across my chest in a curly font for no real reason other than “I liked the definition.” It was my first tattoo, so part of me wanted to see what it felt like getting one too, and perhaps that made me more willing to randomly get a word tattooed on my chest. I was yearning for any excuse to get a tattoo now that I could legally do it.

I’ve since had it covered up. Not because I was ashamed of it, it just looked quite lost having a single word on my chest, and it was difficult to get things done around it without it looking strange. So, it is no longer there. I haven’t lived it down with my friends, though, and one of the common jokes was that it actually read ‘Sandra’ instead of ‘Sonder’. Despite never having dated anyone called Sandra, the joke was that I got an ex’s name tattooed on my chest before we broke up. I did play my own part in perpetuating this joke as I did find it very funny, and would regularly tell people that I had an ex-girlfriend’s name tattooed across my chest. Sometimes it is better to just indulge in the joke as opposed to becoming a victim of it. I also found the joke pretty funny, so that helps.

The ‘Sonder’ Tattoo – During Masters Year, 2015

I’m not sure why I thought the best course of action after discovering a new word I liked was to immediately get it tattooed on my chest. Whether I thought it made me more interesting, or whether I liked the way that this obscure word might help explain something about me as a person, I’m not really sure. I can’t remember how I thought then, and I struggle to relate to a lot of my actions throughout this period of my life now. After all, I was a very different person then, one who drank to extremes and actively ignored many uncomfortable truths about myself. I probably still ignore some uncomfortable truths about myself, but some, like the fact that I have cancer and am statistically very likely to die in the next 5 years, I feel like I’m pretty good at facing… maybe I’m even too good at facing those uncomfortable truths now, and the more pertinent challenge is learning to ignore them and just enjoy myself.

The thing is, I have a lot of tattoos now, and I don’t really understand why I got many of them, but that doesn’t mean I don’t like them. They capture something about myself, from a certain point in my life. I try not to regret any of them, even the one that I got covered up… Poor Sandra; the ex that never existed. As a concept, though, the term ‘sonder’ does still mean a lot to me, both because I decided to get it tattooed on me at some point, and because it did have such an impact on me upon finding out its definition.

The motivation for writing this post came at 4am yesterday morning, as I lay in bed struggling to sleep. For some reason, I decided to start making my way through some of the comments that have accumulated on the blog. I’ve had a backlog of comments which have built up over the past 2 months since I had the surgery. At first, they built up because I didn’t have the energy to respond to them. Then they continued to build up, and I continued to not answer them as it felt disrespectful to the older comments if I only answered the newer ones. Then, I had so many to respond to that I just shied away from the task. I haven’t been posting too often anyway, so I assumed that my readers weren’t taking my absence to heart. It must have been obvious that I was struggling, I thought, and that made me feel better that I had not been responding. I was struggling, so it was hardly a lie. I still am, but it’s getting easier.

Well, as I lay there unable to sleep, I decided that the time had come to start responding. I’m so glad I did. Although I had read all of the comments before, most of them whilst I was still in hospital, or only recently after I had got out, I’m not sure I had properly considered what many of them were saying. People can be so incredibly supportive – I felt really touched as I made my way through them and started responding. It got me thinking back on the concept of sonder and how profound it is.

We get so caught up in what is going on in our own lives that we can easily fall into the trap of thinking that we are truly alone in whatever struggle we are engaged in. That feeling of solitude can be detrimental to our well-being; sometimes more so than the struggle itself. I’m lucky that I have the blog, and this stops me from falling into such a trap so easily, as I have a small network of people who frequently reach out to me, with very similar experiences to the ones I talk about. It still surprises me just how similar some of the experiences that I read about are to mine, though. One person had recently commented on the blog stating that they had a total pancreatectomy (a full removal of the pancreas) only 8 weeks ago. I had the same procedure only 10 weeks ago. In the hospital (where I did suffer from feeling truly isolated and had nothing but time to dwell on my circumstances), I fell deeply into the feeling that I was alone – that what was happening to me was not being experienced by anyone else in the world. That feeling is crippling. It dragged me to the deepest pits of the human experience, resulting in an episode of delirium and some of the darkest thoughts I’ve ever had.

As I read that someone else had experienced the same surgery as me only 8 weeks ago, only a few weeks after my surgery date, I almost felt giddy. It feels sort of sadistic to admit that I was happy to read someone is going through what I am, especially knowing how difficult it has been. That shared experience goes a long way in normalising what is happening to me, though. Not ‘normalising’ in a negative way – not that you ever want to ‘normalise’ suffering from cancer, despite it feeling very normal when you see how busy the oncology wards are at hospitals – but normalising it in a way that makes it feel just that… Normal. At times, the most difficult part of going through everything that I have with pancreatic cancer is the feeling that I’m the only one going through it, due to the constant reminders from health professionals that “not many people your age get pancreatic cancer,” and the fact that “it is very rare for someone to successfully have a surgery like yours.” Even the latter, which is meant to be something positive, doesn’t feel positive when you’re still reeling from the surgery months later, struggling to manage the aggressive form of diabetes now bestowed upon you and still having to visit the wound clinic every day to change the dressings on your abdomen, because the wound still insists on bleeding to this day. Thinking that someone else is probably experiencing these same frustrations right now just makes me feel less abnormal. It is strangely comforting.

The problem with seeking out these types of shared experiences is that sometimes you find something which has the opposite effect. After spending about an hour responding to comments, I decided to look on Twitter, a platform I have been mostly ignoring since the operation. Due to me following a lot of cancer-centric pages and people on there, the algorithm has pinned me down as a real cancer-loving fellow. It is essentially all I see in my feed now. It brings a mix of personalities – the positive ones, the grieving ones, the defeatist ones, and a whole spectrum in between. Unfortunately, I stumbled across the below post at about 5am.

Considering I have scan results later today on Thursday, around 10 weeks after my surgery, this isn’t exactly what I wanted to read today, especially at 5am when I am feeling frustrated and tired. I’ve been comforting myself by saying that the scan can’t possibly pick anything up this quickly, and must just be a process thing to allow me to start chemotherapy, but this post made me think otherwise. I get that it is probably based on real experience, and I know that in most cases my cancer does come back in the form of metastasis to another part of the body, but what a bleak way of looking at things. Hoping to be cancer free should not be something worth criticising, I would hope. Let someone dream – hope isn’t always equivalent to denial. You can both hope to be cancer free and remain that way, yet know that it is unlikely to be the case. This is the world I find myself in – hoping I’ll stay cancer free, yet knowing it may, and probably will be, futile. Perhaps I’m just feeling a little defensive after an unwelcome dose of reality.

Still, the concept of sonder, where everyone has their own view of the world, and where everyone is at the centre of their own universe, can be incredibly comforting when you are going through hardship. No matter how bad things feel for you at any given moment, there is always someone going through something similar. Whether you seek those people out and communicate directly with them, through the internet or some kind of support group, or just allow the thought that they exist to comfort you, I hope it does comfort you when you are feeling low. If it doesn’t, I hope you have at least enjoyed reading about the concept of sonder, and next time you’re sitting in a traffic jam, it encourages you to think about all of those other cars and their occupants, and how they’re probably just as angry as you are about having to wait. I might even be in the car behind you…

The concept of sonder reminds me that these things that are bothering me are not unique to me. There is a whole network of others currently lying in bed, considering the fact that they have scan results for their own cancer later today. Some of them may have more on the line than me. I don’t really know what bad results would mean for me… another tumour? What would that actually mean? Different chemotherapy? No chemotherapy at all? Who knows. Someone is probably just being diagnosed for the first time this second, and I don’t envy them at all. That first diagnosis is soul-crushing. The words which trigger a plethora of existentialism, and start a new chapter in life; one of hospitals, sympathetic looks and a whole load of “I’m glad that isn’t happening to me”’s, even if most of them are probably only said in other people’s minds… Because if it isn’t happening to you, then you should be happy that it isn’t. Why wouldn’t you be? You should be glad it isn’t happening to you… I wish it wasn’t happening to me.

But I’m equally glad that it is happening to me and not to either of my parents, my siblings, my wife or any of my friends. Anyway, it is happening to them in a different way, and even that is hard for me to process. Let’s just hope that the scan is clear, so I can get on to the mop-up chemotherapy, and then push through to being ‘cancer free’, for a while, at least.

Wedding Day

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It feels a little weird to sit down and write a blog centred around a wedding. Usually, I feel like I understand my role in writing the blog – I describe gritty scenes of hospitals and feeling unwell, demanding the reader’s sympathy, all to make myself feel better about the predicament I find myself in. So where does a wedding fit into a cancer blog? Well, it was my wedding, and I have cancer… or I had cancer. I’m not sure what is technically correct right now. Until I’ve finished the mop-up chemotherapy, I don’t feel like I can say I’m cancer free, but the sugeron did tell me that I was technically ‘cancer free’ before I was discharged from his care. Considering I have just had another scan on Friday, I’m not going to curse it and start ringing the bell of success just yet. That would be tempting fate. Let’s say I do still have cancer, for now.

The wedding date was Friday, September 16th. Despite there being a few days of rain prior to the day itself, the sun showed up for the event. We did personally invite it, so it would have been rude if it had shunned us. Another issue had been looming over the event, though. Rail strikes were planned across England and were majorly impacting the train services which many of our guests would be using to get to the venue. In the weeks leading up to the wedding day, I was receiving more and more messages from friends stating that their trains had been cancelled. One friend who was travelling from France had messaged me to tell me that the Eurostar train service from France to England had even been cancelled, and she was having to seek an alternative route to the wedding. Everything was going wrong. Then, Queen Elizabeth sadly died the week before the wedding, and all train strikes were called off. The circumstances were unfortunate, but they did benefit us. Perhaps the omens surrounding the wedding weren’t so bad after all.

I started the day in my own bed, alone. Anna had stayed with her family in their Airbnb. A sudden panic had come over me as I had no idea where Anna’s wedding ring was, and whether I was supposed to have it. She didn’t inform me that she was going to ignore me all morning, but I got an inkling that this was occurring when she ignored my 3 calls to her that morning. Her mum rang me back a few minutes later, fulfilling her apparent role as ‘messenger’. Luckily, Anna and her mum had the ring. It then occurred to me, however, that I didn’t know who was supposed to have the rings for the ceremony. I understood it was the ringbearer, but who was the ringbearer? It should have been our dog Lucy, but we doubted the venue would allow it. Anna’s mum, Kathy, also would not have allowed the wedding to go ahead if we had actually given Lucy the rings, so the dream was already dead.

I took an executive decision and gave my wedding ring to Keiran, my brother-in-law, and our new ringbearer. The decision was very thought out. “You can be the ringbearer,” I retorted to his complaints that he didn’t have a role at the wedding. Keiran’s thirst for attention needed to be sated somehow, so it seemed an easy fix to both problems. When it came to presenting the rings during the ceremony, he made a huge song and dance out of the whole affair, ensuring he was stood at the front for as long as possible. ‘Forgetting’ which pocket which ring was in, and taking as long as possible to dig them out and pass them over, Keiran made the most of his 5 minutes of fame. “Keiran nearly did a good job,” the registrar said at the end of the ceremony. Even she was sick of his antics; I’ve been putting up with them for 7 years now.

The day went very quickly, as everyone always tells you it does. I could barely breathe between conversations and was constantly getting dragged in twenty directions. All the nerves I felt came at the start of the day, when people started to arrive outside of the venue. Once the ceremony started, they mostly dissipated, only coming back again as the speeches began. My speech was third out of the four, and I sat trying to focus on what was being said in the speeches that came before me, but with one half of my brain focused on the impending speech that I’d have to deliver. Things went very similarly to my nerves at the start of the day, I felt incredibly nervous at first, but after a few of the routine jokes went down well and I really started to believe that I had the room on my side, it got easier. I then got to enjoy my best man’s speech with impunity. All of the speeches were great, and it was interesting to see all of the different approaches taken during them.

By the evening part of the wedding, I was starting to feel tired out. I lasted until about 23:00, though, which is much better than I thought I’d manage at the start of the day. Aside from the guilt of not speaking to anyone enough, the day went as well as we could have hoped it would. I thought that I’d suffer from a huge lull once it was all over. It has been a beacon of light ever since we set the date around 7 months ago; a safety net that was there to support is no matter how bad things were getting in the present. Strangely, I’ve felt quite the opposite. It has felt easy to appreciate that it was an amazing day, but that it is over now.

There is a comfort knowing that it all went so well, and that I am now happily married. I think it is a lesson that I have been learning over the past 12 months. As you adjust to a new standard of life, and a new reality that you exist in, one which requires you to be ever more conscientious of the fragility of it all, you learn to really enjoy something for what it is. We cannot go back and relive special days like our wedding day, we can only breathe life into those memories by chatting with friends and family about them, looking at the pictures and re-experiencing the key components – things like the first dance song or the main course that you chose. That has to be enough once the day is over. If it is not, you will mourn the fact that you can’t do it all again, and it will tarnish how you special it all was. Anna and I have been listening to our first dance song a lot in the past week. It’s been lovely.

The First Dance Song

After the wedding, we spent a night away at a very nice hotel called The Tawny in Stafforshire. We could only get one night at such short notice, which was unfortunate. It has lovely grounds around it, and we spent a few hours walking around and discovering some of the hidden treasures. We randomly found a tennis table as we walked along a path, and Anna proved just how terrible her hand-eye coordination is. It was good fun. I couldn’t take advantage of the hot tob like she could, as the wound on my abdomen is still open and at risk of getting infected. I sat next to the hot tub reading whilst she enjoyed the bubbles. It was a nice way to spend the evening and definitely made it feel special, as we would not usually do something like that so off the cuff. Perhaps we should start being more impulsive like this, but I have 3 more months of chemotherapy to get through first, which is why we hadn’t booked a proper honeymoon yet.

Exploring the Grounds

This week it has been back to the hospital appointments. On Thursday I had a meeting with a diabetes specialist nurse at Manchester Royal Infirmary. The nurse told me that she only did two days a week as a diabetes nurse at the hospital, and spent the others as a sports nutritionist for a university. As a result, we ended up speaking a lot about running and its impact on your body. I told her that I was starting to consider running again, and that I had been running throughout my first bout of chemotherapy. She wasn’t impressed. I didn’t know this, but she told me that your lungs and respiratory system are very vulnerable during and after running. With my body going through so much, with the chemotherapy, surgery, and with the upcoming chemotherapy, she told me that I should be careful. I asked her how long she would suggest waiting before starting again, and she responded that she would wait until at least 6 months after finishing chemotherapy. I was quite shocked, actually. It was a helpful conversation as it has convinced me not to start running too soon, but I’ll inevitably ignore her advice. I’m already itching to get out again and I haven’t even started the final 3 months of chemotherapy. Before I start chemotherapy, however, I have to receive more scan results.

On Friday, I had another CT scan at The Christie, checking for tumours in my body. It is never fun attending scans, and the period in between having the scan and receiving the results is never nice either. I’m still feeling very in the middle of the treatment, so I don’t feel too nervous about it. I think it is quite unlikely that a tumour would have taken hold in the time since my surgery, so that makes me feel better. My life hasn’t really returned to normal anyway, though, so I don’t feel like I have very much to lose right now. If I heard another tumour had started to grow somewhere, it would just mean more fighting. I don’t feel like I’ve left that mode in my mind yet, so fighting on would just be a continuation of the current status quo. It’ll be much harder to cope with the scans if I get to 2 years clear, and I have established a ‘normal’ life again. That will be when it risks completely unturning everything again, like my original diagnosis did. For some reason, I feel like a lot more hangs in the balance in that situation. Perhaps this is all just me rationalising why these results aren’t too important, making me feel better about them. Who knows. For now, it’s back to work, back to scans and back to the ‘real’ world. Anna and I had a few days where we treated ourselves, but it all needed to end at some point.

Sorry for disappearing on the blog again – it was a very busy period. I’ll be back to it properly from next week, complaining about having my blood taken and delving into all the doom and gloom of having/not having cancer. I have so much complaining to do about diabetes that I’m considering writing a book titled ‘Don’t Lose Your Pancreas’, which would be all about how fucking annoying life gets if you do indeed lose your pancreas. Maybe I should call it ‘Dancreas Pancreas’, actually. It sounds like a spell from a Harry Potter book, though. Maybe I’ll write some fan fiction where the world of diabetes crosses over with the world of Harry Potter. Instead of having a scar on his head, Harry could lose his pancreas and then have to manage his blood sugar whilst he tries to fight 3 headed dogs and woo Ginny. That’s probably the only way it’ll actually sell. At least I’ve got a plan for the book now. That’ll distract me from the fact that the wedding is over and I’ve got scan results coming up on Thursday…