Last Thoughts Before Surgery

The Road to Recovery

‘You wanna move mountains, go ahead
I think I’ll suffocate instead
A change of scenery won’t tame
The endless earthquakes in my head

So I’ll suffer through
A means to an end, it’s all I can do’

This will be my final post before I go into surgery on Friday. I would imagine that it will be at least a week before I post again, if not longer. I’ve been told that I will be on a high-dependency ward for the first few days. Once I am cleared from that ward, I will be moved to a more routine one for around a week. Of course, it all depends on what is done during the procedure, how well I recover and whether there are any complications along the way. If a Whipple procedure is possible, the impact will be much greater on my body than the NanoKnife.

As the dietician told me, the Whipple involves the surgical team creating 3 new joins in the digestive system. Hearing the phrase ‘new joins’ in relation to your digestive system is a little unnerving; I can’t say that it is an attractive prospect of surgery. The fact that the Whipple would probably be my best chance at getting rid of the cancer however, makes the concept of having new joins in my digestive system a very attractive thing indeed. Join me up, doc… that felt a little weird to type.

Cancer is always pulling you in a million directions. Your standard of life changes so much that you find yourself feeling grateful to be eligible for major surgery, strangely looking forward to potentially having your digestive system rearranged like a hamster run. Of course, the alternative, to not have an operation and allow the cancer to grow inside your body unabated, is most definitely not better. Imagine telling myself a year ago, “Hey Dan, in 12 months you’ll be eight months into treatment for stage 3 pancreatic cancer and looking forward to an operation,” I’d probably have replied with a laugh and a “Who would look forward to major surgery?” I also thought I was immune to things like cancer 12 months ago because nobody in my family has had it. I thought I was invincible so long as I was either training for an ultra-marathon, or actually running one. Turns out that running ultra-marathons doesn’t actually make you immune to cancer. It probably makes your body a little bit better at fighting it, though, so it was still worth something. Hopefully. I enjoyed it anyway so it was worth every second.

I say that I’m looking forward to surgery. I’m not. That probably isn’t a surprise. It would be short-sighted to not acknowledge what a privileged position I am in to be offered this opportunity, though. There are people that read this blog regularly who are not in the position I am in, some who have been definitively told they are inoperable. My surgeon told me that to the majority of oncologists/surgeons, I may have been deemed to be inoperable given the circumstances, but luckily I am with a forward-thinking and optimistic team who do see opportunity here. I am grateful for that, and thus, am looking forward to being afforded such an opportunity. Am I looking forward to going through it, though? Hell no. Am I looking forward to putting my family through it? Hell no. It isn’t good for anyone involved, but it has the potential to change everything.

With a Whipple procedure unlikely to be a possibility, it’ll probably be NanoKnife. Although that carries a smaller recovery time, it still requires the surgeon to cut into my abdomen and play around with the organs there. Clamping this, cutting that; the scene doesn’t inspire a lot of enthusiasm in my brain. Then I remember that one of the things being cut is the tumour itself, and all of a sudden I get all evil and masochistic. “Do your worst, surgeon! Make him pay!” I feel like rubbing my hands together and snarling as I grin, staring at my own stomach. I’d only be cursing my own body, though, and I will eventually pay a price for whatever is done to the tumour. Whether that price is recovering from a successful removal, or recovering from electric pulses being applied to my pancreas, is yet to be seen. Either way, I’m sure it is going to suck at least a little bit in the days, weeks and possibly months afterwards.

I don’t like the war analogy when talking about cancer, but it can be hard to ignore. It’s hard not to liken yourself to someone fighting against an enemy force, even though you feel like a bystander in that war the majority of the time. You attend appointments, anticipate scan results and cower whenever the hospital calls you, but you don’t do a lot else to contribute to the process. Your war is usually with yourself – keeping your head up, finding a way through the painful days and doing your best to sleep well at night. It’s a war of attrition, but the cancer doesn’t have a brain to disadvantage it. Your brain will do everything in its power to attack you. Mine has been telling me that my neck is swollen, that it’s got in my lymph nodes and that my abdomen hurts more than usual. Sometimes, I wonder who’s side it’s really on.

It doesn’t help ignore the war analogy when you find yourself packing your bag the night before, knowing you have a critical period ahead of you. Last night, I was packing my bag and responding to all the lovely messages I’ve been sent. The war analogy felt real. Now, as I write this, I sit in the car on the way to hospital. It’s mostly silent… anticipation hangs in the air. I get the feeling that people feel more anxious than they’re letting on; you can sense it as we sit listening to the music playing from the speakers. Everyone is a sitting duck in their own head.

Anna has the password to the blog’s Twitter account, so that’s probably the best place to find an update soon on how things have gone. Thank you to everyone for the support. I will get back to all of the blog comments once I’m feeling well enough post-surgery! Thank you for continuing to read and I hope I’ll be coming back with some positive things to say next time I’m writing.

The Road to Diagnosis: Part 4

Despite all the advice to not panic, I was experiencing panic in abundance. How else would you expect someone to respond to this situation? The specialist had told me that she finished at 18:00 but should be around until 19:00. If I missed her, I would be spending the night alone in a hospital bed, bouncing around the worst-case scenarios in my mind, just as I was now. Your head can be a dangerous echo chamber, especially when the word resonating around it is ‘cancer’. My mind was racing, my body was shaking, and I felt terrified. We quickly got in Josie’s car and set off. The sat nav said that we would get there just past 18:00, but it wasn’t pre-empting the increased volume of traffic as we got closer to rush hour.

Josie was infallible. She was razor-focused on the road. The car was silent apart from the occasional doom-speak coming from my mouth, “What if it’s incurable?” I wasn’t making it easy for my mum and Josie to stay composed, but both were mostly managing it. I was frantically texting away on my phone, speaking to Anna, friends, anyone who would listen. Time was racing yet standing still. I couldn’t give my mind a second’s rest. It was hell.

The only respite to the tense atmosphere came about an hour away from London. “Do we have time to stop at a service station? I really need to wee,” I’d been holding it in for an hour but had other things on my mind. Now it was becoming unbearable. “I’m not sure. Can you go in a bottle?” Josie responded, originally only half-serious. “I’ll just hold it,” I responded after looking around me and seeing no plastic bottles.

Now, I’m not proud of any of the next bit of this story, please remember that. In 2019 I had purchased every member of my family a Chilly’s water bottle for Christmas. If you don’t know what a Chilly’s bottle is, it is a lovely brand of reusable and refillable water bottles. They have interesting designs, and I had tried to get each member of my family a design that spoke to a part of their personality or interests. I had also purchased myself one, and I had it with me that day…

After requesting that my sister turn the music up to a much louder volume, and asking them both to avoid looking behind them, I started the undignified action of weeing into a premium quality reusable water bottle whilst sitting in the back of my sister’s car, with both my sister and mum in the front seat. It isn’t my proudest moment, but it did make us all laugh. The panic set in when I realised it was nearly overflowing and I wasn’t quite finished. So, I had to force myself to stop weeing (not an easy thing to do), before pondering what to do with it. Well, it doesn’t take a genius to work out what the conclusion was. I wound the window down, looked out the rear window to make sure there was some distance between us and the car behind, and braced myself as I threw the liquid out… on the motorway…whilst travelling at 70mph. There aren’t words in the English language to adequately describe watching your own urine splat on the outside of a car before breaking out into the air behind the vehicle. The indignation is amplified when you know that your own mum and sister are also witnessing it. I went through the whole process again before closing the window and sinking into my seat. We all laughed about it, and to an extent, we forgot about what was going on for a few minutes. I haven’t used the bottle since and somehow managed to lose the lid in the process.

As we got closer to London at about 17:00, we saw the ETA creeping up on the sat nav. My mum and I decided to get dropped off at Ealing Broadway station and take the underground into Victoria, then take a train to Denmark Hill where the hospital is located. We hardly spoke as we sat on the tube. In between being plagued with my own thoughts, I listened to the conversations around me. A woman was chit-chatting to her boyfriend. She was annoyed at her friend for bailing on a night out. As I listened, I tried to empathise with her, but I couldn’t summon an ounce of pity. I longed to hear someone say something real and of substance. I wanted to hear someone talk of real pain, loss, suffering. Why did your friend not join you? Maybe she was going through something? Did you take the time to talk to her about what was going on in her life? I felt mad at her for having such fickle problems, for being so self-centric as she continued to complain. Every sentence was about her, never her friend. Maybe I was moving into my ‘anger’ phase I thought; the denial would surely come after the diagnosis.

We made the train at Victoria with a few seconds to spare, but we had been forced to run. It was busy but we managed to sit down. My mum held my hand, but I didn’t notice. Both of my eyes were focused in front of me. The world was happening around me, but I didn’t feel like I was taking part. How many times have I sat on a train with my headphones in and phone in my hand, not knowing that the stranger next to me was travelling to receive a life-threatening diagnosis? I was shaking. The 15-minute journey dragged, and the city looked grey out of the window. Nearly there.

Anna was waiting for us outside of the hospital building. We walked up to the bed’s ward and went to the reception. They took us into a private room with a bed and a separate bathroom. We were told the specialists would be along shortly. I sat on the bed with my mum and Anna beside me. We waited.

A few minutes later there was a knock at the door. It was my representative from the multi-disciplinary group who spoke to me on the phone with a surgeon I had not met. The head of the multi-disciplinary group who was supposed to be there had to fly back to India at very short notice as his dad had been rushed into hospital. This surgeon looked relatively young, perhaps late 30s, early 40s. I wondered how much he knew about the case.

“Tell me what you know,” he said to me. I wasn’t in the mood to do this. I gave a very quick summary of the cyst, the SPPT tumour and how I knew he was about to tell me that some of those details were wrong.

“It’s bad news I’m afraid…” He paused dramatically. I wondered if he had learnt to deliver bad news from television dramas, or if the dramas were just accurate representations of real life. I heard Anna and my mum immediately burst out crying. My hands both raised to the back of my head. I was holding the surgeon’s gaze. He had a solemn, serious look on his face. I wondered if the sternness was a part of his personality or another tactic to communicate the seriousness of the diagnosis.

“Am I dying?” I immediately asked, not understanding why he thought this was an appropriate way to deliver news. I wanted detail but all I was getting was dramatic silence.

“You have pancreatic cancer. It’s an aggressive form of cancer. We need to get you into chemotherapy straight away, but we can’t whilst you’re jaundiced. The priority is to install a stent in your bile duct to correct the jaundice, then get you onto treatment. The hope is that the chemotherapy takes, then we will need to perform surgery to remove the tumour.” He delivered the words like a death sentence. There was no emphasis on the fact that the cancer hadn’t spread or that I was very young for this cancer so could have a much higher dosage of chemotherapy than the average pancreatic patient. I had to find these facts out later, once I was referred to The Christie for treatment. For now, they bowed their heads and left the room. Anna and my mum were distraught and grieving. I sat feeling numb. “I knew it was bad,” I said. I was smiling by now. It felt vindicating to hear the news after the hellish journey and emotional turmoil of the day. The verdict I quickly drew was that this was likely to kill me, and that I needed to find peace in that fact. I turned to Anna: “Let’s get married. I haven’t got a ring yet, but I’ve been looking. I don’t want to waste any time, let’s just make it happen.” It was very presumptuous of me, and she burst out crying again. We all hugged, including my mum. I took it as a yes.

The procedure to install the stent was planned for the next afternoon. I was to spend a minimum of 3 days in hospital as general anaesthetic was being used, so I had to be monitored the evening before and the evening of the procedure. It was another endoscopy, but I was being put under general anaesthetic. To my relief, the head nurse recognised that the situation was particularly volatile and told Anna that she could stay in the hospital with me to provide emotional support. My mum left to spend the night with my sister Josie in West London.

There were a few reasons that I slept very little that night. A nurse was required to come in and check my vitals what felt like every hour, but it may have been less in reality. This didn’t bother me though. I liked it whenever I got the chance to interact with someone external to the situation. I could pretend that nothing had changed in my life, make jokes, build rapport, laugh. Then they left, and it was back to contemplating my life. Anna was sleeping. I listened to music, spoke to friends who lived in the states and were still awake, and watched some YouTube videos. Predominantly though, my mind was focused on the diagnosis.

“Everyone dies. I’m just more aware of what will probably kill me now than I was a few hours ago, and that’s fine. There are worse ways to go. I have my family and friends around me. I have my fiancé. Life is good.” It was beyond doubt in my mind. I was dying, and I could either accept that fact or let it overwhelm me and kill me quicker. The latter wasn’t an option. “I’m going to go out enjoying every second of it.” It almost felt peaceful in the breakthrough moments. In others it brought me tears; I grabbed my jumper and cried into it, trying to muffle the noises so as not to wake Anna. I skipped between feeling elated, to wanting to scream until my throat bled.

At most I got an hour’s sleep, and that was mainly in small 10-minute intervals. My mind was haunting me. Strange things were happening in my sleep. One time I nodded off and, in my dream, I was in the hospital bed, but the door to the room was slightly open. Outside I saw a black thick substance all over the floor. It was slowly moving into the room. I suddenly woke up and felt awful. The whole thing was so ominous. It had been 15 minutes since I last looked at the time.

We spent the morning together in bed. I think we watched a bit of TV on the laptop, but we didn’t need to fill the time, it seemed to just pass. Eventually someone came to collect me for my procedure. I had to get into a wheelchair, and I was attached to a drip. It was the first time I really felt like a cancer patient.

I found myself in the same endoscopy preparation room as the first time, apart from this time, I knew I was going to be under general anaesthetic, so I felt rather smug about the whole affair. The doctor appreciated my gloating about it being my second endoscopy in 6 days – “That is good going. How was the first one?” he innocently asked. “I’m glad to be under general anaesthetic this time, put it that way,” I responded. He laughed; I wasn’t joking.

The procedure was needed as my bile duct was blocked due to the size of the cyst on my pancreas, not because of the tumour. The stent is a thin hollow tube that they insert into the duct, stopping it from being contracted and allowing liquids to run through it again. “It is a standard procedure,” I was told every time it was brought up.

Eventually I was taken into the procedure room, and my memory fades shortly after that. The nurse asked me my weight so they could issue the correct volume of drugs. I knew my weight had dropped a lot as I hadn’t been eating properly for weeks, but I wasn’t sure by how much. “73kg I think, but I’m not sure,” I responded. The doctor started speaking to me about the best oncology hospitals in the country for pancreatic treatment, but somewhere around here the general anaesthetic was issued, and I was out.

When I woke, I felt out of it. I was trying to sit up but struggling to support my weight. The nurses ran over to me and told me to relax. “There’s a lot of pain in my abdomen,” I told them. They immediately started issuing morphine every 6 minutes. I’d heard a lot about morphine, mostly positive. That was a different experience to mine. It may have been the lack of sleep, or the combination of it with all the other painkillers I was already on, or perhaps both, but I sat there feeling completely dissociated from the world around me. After about an hour and a half it was only me left in the observation room in terms of patients, but there were 4 nurses idling around waiting for me to be cleared to go back to my room. I got speaking to one of the nurses about her son, and she was showing me pictures on her phone. “I guess I might never have kids now.” The words dropped out of my mouth without me realising the weight of what I had said. She apologised to me and seemed ashamed of herself. I didn’t realise at the time. I wish I could apologise to her now. My mind was vacant and the words were more an observation than a realisation.

Eventually I was cleared for release once the pain had died down, and I was taken back to my room.

They discharged me from the hospital at about 16:00 the next day. They checked my weight as part of the discharge process and it was 66kg, far under the 73kg I had told the nurse. It must have contributed to how bad I had felt after the procedure. Anna’s best friend Sophie picked us up to take us home. She had also driven over a load of belongings from our house the day that I had rushed into hospital and went to the shop to buy the most complete bag of snacks I have ever seen. We pictured her running down the aisles of Tesco with her hand out, slapping one of every snack in stock into her basket. She’s helped us out so many times during the journey with cancer and beyond. Sophie is another amazing person that we have around us, and she is always checking in and making us laugh. Eventually I will manage to pay homage to every person who has been significant to us, but it will take a lot of posts. You see people’s true colours shine in these extreme situations, and I’ve been extremely fortunate to find out that most of the people I know are incredibly thoughtful, empathetic and selfless individuals. They make fighting the cancer so much easier with their support.

Anna and I were looking at moving back to my parents in Cheshire. I didn’t want to undergo treatment at St Thomas’s as it was in central London right next to London Bridge, the last place I wanted to be regularly going for treatment during a pandemic. It would also save us a lot of money, and my financial situation was looking bad since my employer would only pay me in full for 1 month. I had already been off for 6 weeks. At King’s, I had raised the idea of the move with the specialist, and she had told me that she would write a referral for me. 2 days after leaving the hospital it had been confirmed that I would be going to The Christie in Manchester for treatment. It was a huge relief, and The Christie quickly got in touch with me to arrange the first meeting. It was time to start embarking on The Road to Recovery.

The 7 Days of Chemo

The Chemotherapy Diaries

The last Chemotherapy Diaries post was signed off stating that I have 2 weeks of suffering between chemotherapy sessions. I have a confession to make. It is more like 7 days of suffering, followed by 7 days of minor suffering. This doesn’t roll off the tongue quite as well though, so forgive me for being melodramatic. Today we’ll walk through some of the weird and wonderful symptoms of that first 7 days, based on my experience so far.

I’ve had 2 sessions of chemotherapy to date, my first on November 27th and again on December 11th. As my sessions are every 2 weeks on the Saturday, you may notice if you have a particularly impressive mind that my next session was due to be on Christmas Day. I had braced myself for this and was thinking of ways I could make it feel special. “I could wear a Santa hat,” I thought, realising that cancer has turned me into the most boring person on the planet. It needed to be something that would make it feel like Christmas at home, like drinking a White Russian.

My family has a tradition of drinking White Russians on Christmas Day. I’m not sure if this is a traditional drink to have at Christmas, but the drink is predominantly white in colour which is the second most Christmassy colour after red. Even more confusingly, I believe the tradition was started by my sister Josie who is a vegan. If you aren’t spotting why that is confusing, then you probably don’t know that a White Russian is a cocktail mainly consisting of cow’s milk. Her husband has accused her of downing milk in the kitchen at night when no one is awake: I can see where this theory may have come from.

I received the appointment card for chemotherapy session #3 and checked it – ‘Monday 27th December’. Well, there goes my opportunity to wear silly hats and sneak alcoholic drinks that I don’t want to drink onto the ward. I have started to bake things for the nurses on the ward though. For the first session I was too nervous to do anything but show up, but for the second session of chemotherapy I baked the nurses brownies. My nurse paraded them around the ward showing all the other nurses what they had to look forward to. I then received a steady stream of visits from them one by one accusing me of buying them from a shop because they were so nice and thanking me. Baking and blogging, I’m currently fluking competence at both. Maybe I’ll make them a Yule Log for the next session. I made some Belgian Buns that I was quite happy with so I am posting a picture of them. The bake isn’t particularly even and I don’t think I’d be getting a Hollywood handshake, but I’d like to think he’d give me a sympathetic smile or something.

As I’ve only had 2 experiences of the fateful 7 days after chemotherapy treatment, I am still learning about many of the side effects of it on my body. Despite my first actual treatment day being easier than my second, the following 7 days were considerably harder the second time. I’m hoping this trend isn’t going to continue as by session 6 (the final session) I will be unable to crack a single joke about any of it.

The symptoms that the doctors warned me of most, and that I already mentioned in chapter 1, is an adverse reaction from your body to changes in temperature. This manifests in various ways depending on the part of the body in question. For example, if my throat gets cold because I have gone outside without a scarf on, it will swell, and my breathing will become coarse. I start to sound like an excited dog on the end of the leash that seems to get a kick out of being strangled. My voice also sounds like I’ve smoked 20 cigarettes that morning after a heavy night on the town. You also cannot eat anything from the freezer, must avoid cold drinks and ice is your enemy. This was particularly upsetting to me. When I was experiencing a lot of abdominal pain, my diet consisted primarily of Orange flavoured Calippos. If you don’t know what a Calippo is, they are a delicious brand of ice lolly that probably have a higher amount of sugar in them than water. Part of my daily routine was to go to the corner shop and buy 3 during the not-so-warm months of October and November. The shop owner used to give me these strange looks that I didn’t even see him give to the alcoholics buying extra strong lager at 7am on a Monday.

I previously mentioned about the pins and needles in my hands in the first blog. This is another reaction to the cold. For the first 7 days after a treatment day, my hands are extremely sensitive. For example, I was cutting some chicken to give to my dog Lucy for her dinner one day. Upon touching the chicken, my fingers immediately cramped so badly that I couldn’t move them at all. I stood looking at my hand in utter disgust before running it under hot water for a minute or so, which finally restored some movement. Again, cold water is your enemy. Avoid at all costs. It will take away the movement in your hands and leave you with pins and needles so bad that the name is far too meek to adequately describe it: swords and sadness is a better name for this issue.

Gloves are an absolute essential, even when driving. The steering wheel is too cold in December to touch with chemotherapy hands, so I must dress like a chauffeur if I need to go out in the car. I don’t attempt driving until the second week of treatment usually, but this symptom seems to hang around more than others.

The worst symptom for me is the sheer tiredness. It is like nothing I can describe. You don’t just feel like you need a lot of sleep, it leaves you feeling utterly dissociated from the world around you. I have moments where I suddenly realise that I am participating in a conversation with someone, but I am doing so entirely on autopilot. My mind just cannot focus. I start feeling like I am floating through my day, falling asleep regularly and barely being cognisant when I’m awake. And when I do sleep, it is such a deep and unsatisfying thing. I tried to describe it to my brother as feeling like you’re having 3 concurrent dreams at once, but you don’t know what is happening in any of them and cannot even divide them from reality because you usually aren’t in your bed and didn’t plan on falling asleep. He pointed out that it sounded like I was describing the levels of sleep from the movie Inception. Fairly accurate, I guess.

A newer symptom is the chronic back pain. I’ve said it before and I’ll say it again, I’m not a medical professional and this is a very colloquial description of the problem. One of the joys of chemotherapy is that it hammers your white blood cells, leaving you extremely vulnerable to infection and diseases. To counter this, for 5 days after the chemotherapy treatment finishes, you must inject yourself in the stomach once a day. The injection forces your bones to create more white blood cells. Quite amazing really, except the well documented issue that this causes: body aches that feel like someone woke you up that morning by driving a train into your bed.

The pain I have started to get in my back is truly unbearable. The wonderful Anna has had to dedicate blood, sweat and tears to attacking my back with a massage gun at 2am, whilst our puppy Lucy watches in utter bewilderment from her bed on the floor. She must have no idea what’s going on. I called the chemotherapy hotline about this pain on Saturday. To my amazement, they told me to use the painkiller liquid I was issued to full capacity if that is what it takes to kill the pain. This liquid was given to me when I was experiencing a lot of abdominal pain during the night. It was issued alongside a stark warning that it is extremely strong. I can attest to this, and the few times I’ve had to take it I have sat wondering when it’ll kick in for about 3 minutes, before going into an alleviated state of euphoria which I usually wake up from 2 hours later having no idea what just happened. It’s like injecting yourself with absinth. Next cycle, I’m going to be hitting that bottle like it owes me money.

Finally, the jaw pain. Again, I have mentioned this briefly in the first post. It is the mystical symptom that is undocumented but apparently completely normal. When I first put food in my mouth, I get shooting pains throughout my jaw which are so painful I must sit with my head in my hands for about 10 seconds, teeth gritted and palm on forehead. The frustrating thing is that the pain is only in the exact part of my mouth where the food is; so, if I do not try and chew my food with all areas of my mouth straight away, I get the same pain repeatedly as food makes its way around my mouth. This symptom is the one that catches me off guard the most, and I find myself in the middle of a routine conversation with someone in my family whilst I eat my breakfast, only to unexpectedly flinch, utter every expletive under the sun, then put my head in my hands and moan for a few seconds. It’s quite the ride for my family. Writing this has also made me realise how repulsive it is to describe chewing food, so apologies for that.

These have been what I consider to be the most interesting of the symptoms. There are other, more predictable symptoms, such as nausea and an occasional aversion to food. But they are largely manageable with the drugs issued to you. Hair loss is a side-effect associated with my chemotherapy, but it isn’t guaranteed like it is with other types. I think most people who see me these days expect me to show up with even less hair than I already have, but my small amount of hair seems to be staying put for now.

After the first 7 days after treatment, I generally start to feel better. Most of these symptoms remain to some extent, but I can get out of bed and move around the house freely. I even manage to get out and see some friends, which is much needed after the stressful symptom-heavy week. It is to be seen if any of these symptoms worsen the more chemotherapy sessions I attend. Apparently, it is quite common to have a really hard treatment towards the end of the cycle, usually around the 5th session. Although I don’t want this to happen, it may make for some good material for the series. Time will tell.

The Road to Diagnosis: Part 3

So, I had a cancerous tumour, but there was a silver lining. The specialist explained that they believed the tumour to be a Solid Pseudopapillary Pancreatic Tumour (SPPT). They are extremely rare, but also extremely slow growing and have a very high recovery rate once removed in surgery. It was really good bad news. When I broke the news to my friends, one of them did some further research of articles about the type of tumour. He works in cancer research so was well placed to crunch the jargon. The studies he found seemed to reinforce the positive points about the tumour type that the specialist had informed us of. He also pointed out that the tumour was predominantly found in women in their 30s, a fact that they certainly enjoyed.

Anna had a lot of questions about the diagnosis that I couldn’t answer, and the more we spoke, the less I felt I knew. She called the specialist the next day to clarify a few things. The main question pertained to how confident the doctors were that the diagnosis was correct. The specialist assured us that they would only name the tumour if they had a very high confidence interval. It was all down to the endoscopy. During that procedure they would take a biopsy of the tumour. That sample would then be tested, and we would conclusively know the tumour type.

It still felt confusing what news I was actually breaking to people at this point. I had managed to get imposter syndrome over my cancer diagnosis. Telling people that I had cancer felt insincere; cancer is dangerous and spreads easily, and what I had didn’t sound like those things. But it was also called a cancer, wasn’t it? Or was it a cancerous tumour? Was that cancer? And what about the cyst, was that also the tumour? Did I ask the specialist these questions? Oh whatever, the Endoscopy was in 3 days, and I was terrified of it. Just needed to focus on that. My mind was conflicted and there were too many things going on.

Finally, the day of the endoscopy came. It was E-Day, and I was very nervous. The idea of a camera being pushed down my throat whilst I was on sedatives alone had haunted me from the moment that I learnt what the procedure was. Further to this, I knew that they would be taking biopsies with a needle, as well as ‘draining fluid’ from the cyst. “These better be some powerful sedatives,” I thought to myself.

I arrived at the endoscopy department and waved goodbye to my mum and Anna. They were my entourage throughout my hospital visits and continue to be so to this day. After being signed in, I was taken into a small ward with individual beds and curtain rails around them. None of the curtains were being used, and everyone was exchanging the odd shifty glance. There wasn’t a smile in sight, but why would there be? We were all about to be assaulted by the men in coats, apparently for our own good. Stockholm syndrome was rife as we nodded at the doctor’s words and thanked them for their help.

The nurse came to put my cannula in. At this point, cannulas were becoming a routine pain for me. It didn’t make it any more fun to have them inserted, but I had stopped getting nervous about them. This time, they wanted to insert the cannula just below my wrist and to the right, just where a bone is. “It’ll hold well there during the procedure because the skin is tight,” the nurse confidently told me. I shrugged my shoulders and smiled. They were about to stab my organs with a device via my throat whilst I was awake… I couldn’t care less where the stupid cannula was, it was bottom of my priority list that day. He then pushed the cannula in, and I felt my soul throw up inside my body. The needle had scraped against the bone as it had been inserted into my vein, and I had never felt so repulsed in my entire life. “That wasn’t so bad, was it?” he said, as he attached the tape to hold it in place. I vacantly smiled as I tried to remember if I had accidentally smashed any mirrors recently. Where was this bad luck coming from? Anna always told me not to walk on 3 grids, and my response was to gleefully tic-tac-toe across them like a toddler whilst holding eye contact with her. Maybe I was paying for it.

After 45 minutes I was collected from the holding pen and taken to the procedure room. To my utter dismay, the original private specialist I had seen who had told me I was constipated just over a year ago was one of the 2 doctors present in the room, alongside a few nurses. I did not have time to think about it. One nurse had a suction tube which she said would be used to remove excess liquid from the mouth during the procedure. The nurse lay me on my side and various things were placed around me. They quickly injected me with the sedatives. I was asked to bite down on a silicone device that was then strapped to my face like a gag. It allowed the wire that the camera was on to enter your mouth and throat without you resisting it with your teeth. Where else would such a device exist? That’s right – Guantanamo Bay! Alas, we were away.

My memory of the procedure is hazy, especially the beginning of it. The sedatives have an impact on your ability to recall the memories, and they likely do a lot to stop various muscles tensing and resisting the advances of the tube during the procedure. In spite of this, I do have some memories that are traumatic to say the least.

I remember trying to throw up bile but it being stuck in my throat because the tube was blocking it. It was like being waterboarded with your own sick. I remember a black liquid coming out of my mouth at one point, presumedly from my stomach. I was trying to say “I need to stop” during a particularly painful moment but the nurse couldn’t understand me; I think it was when they were draining a large amount of fluid from the cyst. I’m sure I overheard the 2 doctors discussing cricket at this point. I guess it must become a trivial sight if you do it all day every day, and this is essentially their office. Nothing wrong with talking about cricket at the office, right? I also heard them say something about the situation being more complex than they thought, and that they needed to take the findings back to the group.

At the end of the procedure, I sat up on the bed and the private specialist spoke to me. In the preparation notes for the procedure, I had been told that the doctors would inform me what they saw and give their initial opinion on things. Unfortunately, that didn’t seem to happen for me. “Can you give me a history of the problem?” he asked. He didn’t remember me, but why would he? He had barely looked at me in any of our consultations. I thought that my name might have jolted his memory if he was in the cross-functional team dealing with my case, but apparently not. I informed him that the issue had started over a year ago and that I had seen him about it first. He looked baffled, got his phone out, searched his emails for my name and found the details. I filled him in on the rest of the timeline to the present day.

“Well, today we have managed to take a few successful biopsies, but we could not easily identify the tumour on the camera. We also drained all of this liquid from the cyst,” he held up 2 tubes of a thick black liquid. It was like a scene from Alien. I felt sick. “Do you think what you saw supported the theory that it’s an SPPT tumour?” I asked. “I’m not sure, maybe,” he responded, dismissive as ever.

The nurses wheeled me to the recovery room where I had to be observed for about an hour before being picked up by my entourage. It was over, but it took me a few days to fully calm down from the experience. Everything about it rocked me. I wondered if the sedatives were actually really effective and that I had imagined that the private specialist was one of the people in the room. Maybe the experience I remembered was constructed from a nightmare? But no, I saw the endoscopy notes which had been sent to my GP and reviewed the sign-off names. The story’s main villain had written himself back in and put me through an endoscopy. Touché, private specialist, that is definitely 1 – nil to you.

I went home to my parent’s house that weekend to relax. My sister Josie had driven my mum and I back the day after the procedure on the Thursday. I had warned the team at King’s that I wanted to go home to try and relax for a few days, and they had approved for me to do so. The next meeting with them was the following Wednesday, so we had time.

On Monday, my sister and mum attended a funeral in Alsager, where my parents live and where I grew up. They were due to get home at about 14:00. We were going to head straight back to London once they were home. At about 13:45 my phone started buzzing. I looked at who was calling – No Caller ID – the hospital.

It was the beds department at King’s College London. “Hello Daniel. I’ve been told to assign you a bed on an emergency basis for your procedure tomorrow,” the gentleman said. He sounded very nice, but the words he was saying didn’t and I had no idea what he was talking about.

“I’m sorry, emergency procedure? I didn’t know I had a procedure tomorrow. No one has told me. What’s going on?” I was panicking. This wasn’t what I needed. I was in Alsager in Cheshire, about a 4-hour drive from London, probably more at that time as rush hour approached. “Oh, I’m so sorry, Daniel. Your specialist should have called you. I’ll speak to her again and ask her to contact you shortly. Don’t panic.” I didn’t heed his advice. It was back to pacing the room.

My phone rang again after only a few minutes. It was my specialist team’s representative. She apologised that the beds team had got to me before she had and explained that I needed to go into hospital as quickly as possible that day. King’s College London had a bed reserved for me and I was due to have an emergency procedure the next day. “Has my diagnosis changed?” I was struggling to string the words together. I’d never been admitted to hospital before and had never had a procedure which required me to be under general anaesthetic. There were too many things to process, and I wasn’t even in London.

“Yes, your diagnosis has changed. We can’t talk about it over the phone. How quickly can you get into hospital?” Her calm words were scraping down my brain like fingernails on a chalk board. I felt like I was going to pass out; for the first time in my life, I really felt like I was having a panic attack. “I can’t, I’m still at my parent’s house. I need to set off right away and I still might not make it until 19:00. I can’t cope with this. Why can’t you tell me over the phone?” I was pleading with her; the tears were coming faster than ever. It must have been hard for her. She always gave off such a positive and well-meaning aura. I knew this part of the job was hard for them too.

“Just get here as quickly as you can. I will be here until 19:00. Come straight to the beds department and ask for me and we’ll talk to you then. Try not to panic, it won’t change anything”. The last words echoed out in my head like a gunshot in an alley. I had to get to London. I had to try not to panic. I was already miserably failing at the second one, better work on the first. My mum and Josie walked into the house.