The Road to Recovery

I finally had a diagnosis, even if it wasn’t one that I wanted. Things changed quickly from here. Anna and I made the decision to leave London and move back in with my parents in Cheshire for treatment, and the following week we were back home. The Christie arranged an initial appointment for November 17th where I would meet my specialist and do the required tests to become a patient and start treatment.

The period between my diagnosis at King’s and first appointment at The Christie was bad. I wasn’t sure how it had impacted me for a while. Whilst preparing to leave my bed in King’s after 3 days being an inpatient, I had a bit of an emotional outburst to my mum and sister which indicated my head was in a bad place. Anna was driving to pick me up with her best friend Sophie, so it was only Josie, mum and I in the room. Unprompted, I started telling them that the whole family had to move on if I die, including Anna. It couldn’t become a burden of the family, and they had to find a way to accept it, move on, and enjoy their lives. They both sat weeping as the words fell out of my mouth. I felt emotionless about it. It was as if I was reading them a shopping list. I thought I was accepting the situation and being a ‘realist’ at the time, I think. It was only when my mum uttered something like “you seem certain that you are going to die” through her tears that I suddenly started to process the weight of what I had been saying. This was the first time that I realised how negative my headspace was, but I don’t think I shook it for a while longer. I still haven’t in many ways, and the trauma of the diagnosis still surfaces from time to time.

In my appointment letter from The Christie, they told me that I was allowed to bring someone to support me as it was my first appointment, but after this I must attend alone. It made me anxious but it was understandable. A Covid outbreak here would be catastrophic for both the staff and the vulnerable patients receiving treatment. My mum reluctantly said that Anna should be the one to go with me, and the entourage was officially broken up. Thanks, Covid. We had a good thing going there.

My mum and dad dropped us off near the hospital, none of us realising there was a drop off zone right outside the entrance for patients. We walked over and entered. Another day, another hospital.

The Christie is undoubtably a nice-looking hospital, but it is a hospital none-the-less, and I didn’t really want to be there. We sanitised our hands, grabbed a mask and joined a queue of patients waiting to speak to the receptionists. What makes The Christie stand out is the people. As we approached the front, I handed the nurse my appointment letter and told her that it was my first appointment. She immediately made us feel comfortable. Her tone was lively as she stood in front of us – “Oh wow you’re coming from London – that is quite a journey, isn’t it?” I explained that I have had to move back in with my parents in Cheshire to undergo treatment. We followed her as she led us to the appropriate wing of the hospital.

“My mum has just been diagnosed with breast cancer. They want to send her for treatment in Leicester, but I want her to move in with me and come for treatment here. Not just because it’s the best place to come for treatment in the country, but because she’s too old to look after herself without cancer, never mind with it. I can’t cope with the thought of her dealing with this alone. How did you manage to get a transfer? I’d really appreciate your help. I’ve been worrying about it for weeks.” I felt invested in her struggle and I had only known her for 2 minutes. I told her how easy the referral had been for me once I explained the circumstances to the specialist and advised her to do the same. We arrived at the appointment location, and she seemed genuinely grateful as she wished us luck, smiled and told me she could tell I was strong. It already felt like a different world to the one I’d become accustomed to at King’s, where I had faced so much negativity and dismissive behaviour.

I signed in at the reception and was told to wait until my name was displayed on the screen. My bloods would be taken, then I would be called into an office to see the specialist. It had probably been the longest I’d been without having my blood taken in a month and a half. I felt nervous again. I’m not sure how I can still feel nervous about blood tests after everything I’ve been through over the last few months, but I have learnt that the experience varies greatly depending on who is doing the blood test. At its best, it is a light scratch sensation followed by an uncomfortable 20 seconds or so of you knowing that they are extracting your beloved blood directly from your veins. At its worst, you feel a needle digging around your arm whilst a nurse tells you “I can’t seem to pull blood for some reason”; you know why, it’s because they have stabbed the needle straight through the vein and they’re technically now performing surgery on you. This was more of the latter experience, and after I returned to the waiting room, I sat struggling to bend my arm. I’m pretty sure there is a piece of that needle circulating through my veins at this very moment.

There was a long wait before my name appeared on the screen again, probably an hour. We were taken into a nurse’s office, and she did the standard weight and blood pressure checks. I was noticing a pattern with every professional I spoke to at The Christie. They would see I was quite young and suddenly say something like, “Oh you’re the marathon runner from London”. The more times this has happened, the more certain I am that this is a misnomer for, “Oh you’re the guy who is 28 and has pancreatic cancer,” but that isn’t as encouraging a reason to know who you are, so they stick with the marathon/London thing. I usually correct them on the marathon part – “Ultra-marathon runner actually.” I’m kidding, I haven’t said that. Yet.

The nurse then sat chatting to us about quite literally anything and everything as we waited for the specialist to become available. She was giving us the low down on the hospital. There was a new site opening in Macclesfield that she was moving to, The Christie was the best place she had ever worked, she doesn’t accept bad attitudes from anyone working there no matter how senior they are to her. She was very nice and was making us feel comfortable, but my head was entering panic mode. I still believed my diagnosis was fatal at this point. The way the news had been delivered at King’s had given me very little detail on what the problem was and had made it sound as though treatment was futile. In my mind, I was waiting for the specialist to come and tell me that there was a very small chance of treatment working but that they were going to do what they could. This mentality had been left unchecked for about 10 days, and I don’t think I realised the extent of its effect on me, even with the random outburst I described earlier.

After about 40 minutes of waiting, the nurse had to step out to help a colleague. As soon as she left my head dropped between my legs and I started struggling to breathe. Tears were coming and I was panicking. I had been trying to hold it together and continue engaging in the conversation with her, but the room felt like it was getting smaller, and the words of the diagnosis were bouncing around my mind like a pinball machine. As soon as she left the room, the tension burst. Anna was trying to comfort me; I was struggling to speak. The nurse came back in and immediately ran over to me and put her arm around me. “You’re ok, you’re going to fight this,” she was saying. After a few minutes I managed to get myself together again. I explained to her about the diagnosis and how traumatic it had been, how the doctor made it sound so hopeless and that I still didn’t understand the intricacies of the tumour. I’d been told to forget about the cyst after being diagnosed with pancreatic cancer, but I didn’t understand what the relation of the cyst was to the rest of the issue. The cyst was the reason I was ever taken seriously in the first place, how could I forget about it?

Eventually the specialist came in. He seemed quite young, maybe late 40s. He asked if a junior doctor could sit in the background and observe. I said he could. The vibe the specialist gave off could not have been more opposite to my experience at King’s. He radiated positivity. Everything he said added value, nothing went unexplained, and he ensured I was always engaged by asking me questions and checking on how I was feeling. I explained to him about my initial diagnosis, and how it had left me feeling like the doctors were speaking amongst themselves about my case as if it was hopeless, but that they wouldn’t tell me that. I conceded that it sounded paranoid, but I’d not had any medical professional since my diagnosis give me anything to make me feel positive.

The conversation with the specialist was good, and I finally understood some of the intricacies of the tumour, and why it was an awkward case. Pancreatic cancer requires surgery if the subject is going to recover. It is also an extremely aggressive cancer, meaning it will spread around the body if left unchecked. My tumour was not only big, but it was right next to a vital artery which feeds the lower part of the digestive system. Without the artery running, you quickly die. This makes surgery extremely difficult as it is too risky to attempt to cut out the tumour when it is so close to this artery. So, the reason for doing chemotherapy straight away is twofold– to stop the cancer spreading (luckily, my PET scan showed that the cancer had not spread yet which was very positive) and to attempt to shrink the tumour away from the artery, allowing surgery. Unfortunately, it is essentially blind luck whether the tumour shrinks away from the artery or not. I felt smart for a second. I stipulated that chemotherapy drugs are issued via the vein and so would travel through the artery, perhaps making it more likely to shrink away from it. The doctor admired my optimism but told me that it did not work like that. Of course it doesn’t. In some cases, chemotherapy does not manage to influence the tumour size at all. It does not mean that chemotherapy is pointless as it will still prevent the cancer from spreading, but it is not good news if this is the result of the treatment.

The specialist reassured me that there was a lot that could be done. Due to my age and health, they could use the strongest form of chemotherapy drugs at their disposal and for the longest period. If the chemotherapy drugs weren’t having the desired effects against the tumour, radiotherapy and/or Nano Knife treatment could be used to influence it. Chemotherapy would have to be peppered in between these other forms of treatment to ensure the tumour did not spread. I had said something melodramatic to the effect of “I feel like I should be planning my own funeral” earlier in our conversation. “You’re a long way from having to plan a funeral,” he said to me before leaving, smiling and rushing off to the next appointment. I finally felt like I was being reassured by a medical professional, and that there was some hope in my battle against the cancer. It was such a significant turning point in my struggle, and I have so much respect for that specialist. It finally showed me that the things I had been experiencing with other doctors were real, and that I had a right to feel aggrieved by the way they had spoken to me, their body language and the lack of detail they seemed to provide.

I left the hospital feeling exhausted, but relieved. There was a plan, there were the right people available to execute it and there was finally some hope. The next big checkpoint would be the scan after 3 months of chemotherapy. That would tell us if the chemotherapy had any effect on the tumour size, whether it had shrunk away from the artery and would inform the next steps of treatment. It will not be until mid-February, so The Road to Recovery may go a little quiet for a while.

Hopefully the next update will be one of positive news and enthusiasm. The best-case scenario would be that the tumour is surgery-ready, no matter how terrifying that is. The worst-case scenario I guess, would be that the cancer managed to spread despite the chemotherapy, but it sounds unlikely that this will be the case. Whatever the result, I feel that I have a team of motivated and positive doctors at The Christie, and every interaction I have with them reinforces that fact. No matter what the outcome is, I have faith that they will do everything in their power to fight the cancer with me. For now, I fight through the chemotherapy and hold out hope for the scan in February.  

Alive

The boundaries are blurred so I wait
Observing from a distance,
I consider my fate

In time there’s some meaning
I establish my feelings
A calming naivety, au fait

As I recoil back within
Escape the prison of my skin
I know that I suffer, but I’m alive

There’s moments of fear
And flashes of pain

Some days last an hour
Some hours last a day

In confidence I cry out and drop the facade
But I fight on regardless

Alive

Discussion

I wrote ‘Alive’ about a week after being finally diagnosed with Pancreatic Cancer. I’ve been reading it in my notes on my phone since Monday, as I am finding myself relating to the words much more than I have been of late. This cycle of chemotherapy has been the most uncomfortable so far and my mood is suffering a bit because of it. At the time of writing this poem I felt unsure about my diagnosis and how worried I was. The first 3 verses were written about my struggle to come to terms with both the mental and physical elements of the diagnosis. The last 3 verses were then added the next morning when I woke up feeling particularly “doomy” about the situation.

Although I want to be as positive about my scenario as I can be, an important part of my process is always accepting negative feelings and trying to deal with them in a healthy way. Pretending that I do not get upset, scared or worried by the diagnosis, and what the future holds for me, will not stop those feelings surfacing. Unfortunately, I am having a few tough days where those feelings are getting the better of me. But it does mean that it feels right to share this poem now, so I hope you enjoy!

I’ll be back to the blogging shortly.

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.

Merry Christmas and Thank You!

And another year slips by in what feels like the blink of an eye…

This Christmas is feeling a little different for me in a few ways. Usually, I would have spent Christmas Eve having a few more drinks than the average night with my family and friends. In past years this has resulted in me struggling to eat my Christmas Dinner or, in particularly bad years, stopping me from enjoying a single second of Christmas Day. I can’t say that I feel disappointed about this change. I still had friends over yesterday though, and they had some drinks with my family. I just enjoyed the company, and they are always great company!

Finch waited until everyone was there before walking into the room with 2 wrapped presents and a card. Everyone was smiling and I was trying to figure out what sort of smile it was. Were they happy because they knew the presents were that good? Have they done something else that I was going to struggle to accept? Or were those smiles in fact smirks? Is this going to be at my expense? I was told to unwrap the presents in the order they were handed to me, including the card in the middle.

The first present was a book. ‘Everybody Writes’ by Ann Handley, a book about improving your writing. “So the first present was incredibly thoughtful,” I thought to myself. I read the card next – “To Dan and Anna. We have put something together which will hopefully help put a smile on your faces if future dates/appointments begin to become a little overwhelming”. My interest was well and truly peaked, but it seemed another undeniably thoughtful present based on the message. I unwrapped the last present and found it was a calendar with the picture from the surprise engagement meal on it; I used this picture in my Friends & Family post. What I didn’t know at the time was that this picture was a ploy. It was a façade placed there only to naively draw me in. What followed was me flipping page by page through the calendar to various levels of laughter, surprise and a peppering of disgust. Seeing as they gave me this calendar to hang in my house, I don’t think they will have a problem with me posting it here. Flick through at your own risk, there’s some disturbing content to say the least. It really is undeniably thoughtful though, and it will definitely put a smile on my face no matter what appointments I am having to mark inside it.

I also wanted to add a couple of honourable mentions. Firstly, to Lucy Giannasi for making me the amazing ‘Ebb and Flow’ card. I love it so much and it is so beautifully done! Next, to the group of friends that are self-named ‘The Turks’. I met Dan Sayek at Arcadis when I used to work there, and he’s been a very close friend ever since. Lucky for me, Dan Sayek comes with a whole catalogue of other friends that he knows from Turkey. They all live in London and are amazingly intelligent, thoughtful and interesting people. Not only have they made the 3 hour journey from London to visit me recently, but they then sent a Christmas Hamper to Anna and I to say thank you. What they were thanking me for I am not sure, all I did was cook them some spaghetti and let them look after my dog. I am so grateful for them and all the support that they are providing to me.

Another change this year is that my brother Greg won’t be here as he failed a PCR test. The labs were struggling to meet demand with PCR results this week it seemed, and it took 5 days for him to receive his. He had packed up the car with his stuff and was ready to leave Manchester as he received the positive result via text. By this point, he was convinced that the minor symptoms he had experienced the weekend before were due to the booster jab. He had done 2 hardcore cycling sessions that week since experiencing the symptoms (for those of you who know him, you will know he doesn’t do easy fitness sessions) and neither of them phased him. He was pretty sure he couldn’t do this with covid, but he did also test positive for Covid a few days after competing in the Bolton Iron Man last year; we should have known better really. Apparently us Godley’s like completing challenging events with unknown health problems – I did my last ultra marathon with cancer and Greg completed an Iron Man with covid. Luckily, his wonderful girlfriend Kate is staying with him in Manchester, so I hope they have a lovely day together and I look forward to seeing them soon.

The biggest change for me though is my diagnosis. What is strange is that Christmas was one of the first things that played on my mind when wrestling with the idea of having cancer. “I wonder how many Christmases I have left,” I sat pondering at 4am in my hospital bed one night. It really bothered me. I wondered if I would be able to enjoy any single one of them, or if the pressure I’d put on myself to enjoy them to the fullest would make the whole thing overwhelming.

I am now in a completely different headspace to then. You cannot process news like that in a week. You can’t even expect yourself to process it in a month, or 6 months, or even a year. Everyone is going to be different, and what ‘processing the news’ means for you may be very different to what it means for me. It is also influenced by the people around you, including the doctors you have. My processing came in waves, across 2 diagnoses of very different severity and with a range of differing attitudes of different doctors and nurses. It was only when I got to The Christie in Manchester that I felt like a set of doctors truly spoke to me positively about the situation, and that made a huge difference for me. Until this point, I was still processing news that felt to me was almost certainly a death sentence, something which was taking me a while and was difficult.

Another thing worth mentioning is that I have started to use Twitter to follow others experiencing cancer. Those of you who know me likely know that I have been very anti social media for a long time (Strava doesn’t count as social media – don’t even try it). For me, I realised that social media gave me a false reality that negatively affected my relationships. It was a means of feeling like I had a lot of friends and that I was involved in their lives, but actually I was passively learning about the ongoings of their life with little effort or engagement from either of us. As a result, I deleted all of my personal social media accounts and decided that any relationships I have from now on, I must make an effort to sustain. It felt good, and I have stood by that stance for 6 years. Now that I have a Twitter for the blog however, I have started seeing some different positives to social media. Twitter is helping me find people experiencing similar things to me, which is wonderfully therapeutic and encouraging. I opened the Twitter app 2 days ago to find the following tweet at the top of my feed.

The treatment plan she speaks of here is the exact same treatment plan that I am currently undergoing. Folfirinox is the same chemotherapy type that I am on, 12 sessions (2 cycles of 6 sessions) is the current plan and the aim of that chemotherapy is to allow surgeons to perform the Whipple, which is the type of surgery required to remove the tumour. I was suddenly flooded with so much positive emotion. Primarily for this woman who I did not know, but that I knew was sitting somewhere in the world right at that moment, experiencing such an incredible feat. I felt so incredibly happy for her. But it also showed me that treatment plans work and, specifically, my treatment plan has worked for someone. It is easy to say that this should have been obvious to me, but it felt different to see a random stranger write the details of the very same treatment plan as me, within a message stating that she had beat the cancer. What an amazing feeling, and it’s another example of someone sharing their message and having a profound effect on the world around them. I responded to her Tweet, and she sent me a lovely message of positivity and strength.

It is on this positive note that I will sign-off the post for today. Thank you so much for reading my blog, it means the world to me. It feels like I have been doing it for so much longer than I have, and I keep reminding myself that it is new to me every time I get cold feet about a post or feel self-conscious about things that I am writing. I’m learning a lot about writing and about myself, and it is when I am learning that I am most motivated in life, so it is helping me tremendously with my diagnosis. I hope that you have a lovely Christmas day and spend it with whoever is closest to you, exchanging gifts and eating far too much food.

Love, Dan x

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.

The Road to Diagnosis: Part 2

My response to the news was complex. I started to cry almost instantly but not for negative reasons. It was the first time that a medical professional had acknowledged that there was something wrong with me. The primary emotion I felt was relief. My girlfriend Anna immediately started crying as I broke the news over the phone. I called my mum and asked her to speak to Anna. For anyone who hasn’t had the pleasure of meeting my mum, she is the single most loving and caring person on this planet. There are 6 children in my family. Most people’s response upon hearing this is, “How did your mum cope?”. The answer? By being an actual, real-life angel. She has told me multiple times that she would take the cancer in a heartbeat if she could; something which is utterly beautiful and heart-wrenching in equal measures.

The drama of same-night surgery was short-lived. A specialist doctor inspected me and authorised me to go home for the night, requesting I return to the Ambulatory Care Unit of Lewisham Hospital in the morning.

I spent most of the week in Lewisham Hospital, attending various scans and having approximately 4 billion blood tests. I made it obvious early on that I was not a fan of blood tests, something which quickly became the joke of the ward. On one particularly blood-test-heavy day, the nurse popped her head around the curtain and simply said, “I’m so sorry”, with an insincere smirk on her face. This was the fourth time that day that she was sniffing around my veins, and I was starting to suspect that she was a vampire. I imagine the Ambulatory Care nurses are still sat around in the break room drinking my blood from pint glasses and laughing about that time they made me do 4 blood tests in a single day.

The first warning sign came during the ultrasound. Most people associate ultrasounds with babies, and likely have a positive reaction when a doctor hones in on a single spot around the stomach, and says to himself, “Well there’s something going on there”. When you are a 28-year-old male however, this sets off some alarm bells in your head. The situation worsened. He called to another doctor and said he needed his input. Both doctors then stood around the monitor whilst he massaged a spot on my upper abdomen. “Does this hurt?” he asked. “Yes, it still hurts,” I replied, starting to think he gets a kick out of this kind of thing. Somewhere during the scan, I hear the word ‘cyst’ uttered between them. This word would plague my life for the next month and a half.

By the end of the week, I had done an MRI and an ultrasound. We had been informed that there was a cyst on my pancreas, but the doctors were not sure why it had formed or how. The case was now being passed to a multi-discipline group of professionals, and I was being referred to King’s College London for further diagnosis. 5 days passed and I had heard nothing. I called the reception of the Pancreatic Care Unit at King’s College London and explained the situation. The receptionist checked their records and found no mention of a referral. Obviously, this wasn’t the news I wanted. I called the Ambulatory Care Unit at Lewisham and asked the nurse to chase it up with the doctor. The next day I received several phone calls from King’s College organising various scans and meetings with specialists. Now, it may be down to blind luck that this occurred the day after I chased it, but there is a pessimistic side of me that suspects otherwise. The nurses at the Ambulatory Care Unit were a reliable and dedicated group of people though, and I knew I could count on them to kick the doctors into shape.

Two more scans were planned at King’s College London: a CT scan and a PET scan. A procedure called an endoscopy was also arranged for the 25th of November. This frustrated me to no end as the date I received this appointment was October 20th, so it was over a month away. I tried to temper my reaction though and reminded myself that I was not a medical professional and that they must prioritise things as they see fit. Maybe it was even good news that they saw me as such a low priority as that must mean the issue is trivial. That theory didn’t last long.

The CT scan was standard and non-descript, other than the nurse’s response to me saying that I had an endoscopy planned. “Oh god I had one of those and it was the worst thing ever. No matter how bad you think it’s going to be, it’ll be 100 times worse”. I didn’t expect this to come out of a nurse’s mouth, but I felt weirdly grateful at the time for her being so honest. I wondered what other hobbies she might partake in though seeing as she clearly revelled in the morbid. She probably winds down from work by writing hate comments on puppy videos or something.


This is not so relevant to the diagnosis itself, but it is too funny not to mention in the timeline.

It was around this point that Anna and I woke up one day in our bedroom as normal, only for Anna to attempt to leave the room and find the door handle turned 360 without doing anything. “WE’RE LOCKED IN!” She immediately sounded distressed.

We were locked in our own bedroom of our own flat. I assume we aren’t the first ones to ever experience this situation, but it really makes you feel like you’re the only person that something this ridiculous could ever happen to. I felt an unparalleled amount of moronic impotence that I will probably struggle to feel again.

After a few minutes of minor (me) to severe (Anna) panic, I called my dad to see if he had any suggestions. He’s a very practical guy so I knew I could rely on him. Unfortunately, there were no keys to the flat in our bedroom, we had no tools, the door opened inwards making kicking it in difficult/impossible and none of our neighbours or friends in London had spare keys to the flat. My dad kept the suggestions coming and we kept cutting them down.

It was Anna who found a large bike lock under the bed that she hadn’t used in months, and suggested using it to bash a hole in the door. Now, this is where things got even more stupid… Instead of knocking the lock out straight away like rational people, we may have started trying to make a hole big enough for Anna to climb through… It was a stressful situation, please do not judge us. We probably spent 25 minutes hammering the middle of the door with the bike lock, with Anna footing a lot of the work due to the amount of pancreatic pain I had at this point. Eventually we realised what we were attempting to do was far more effort than just knocking the lock out, and about 3 minutes later we were out.

Anyway, back to the serious stuff.


It was during the PET scan that I started to sense that something more was going on beyond a harmless cyst. Before getting into the details, please remember that I am not a medical professional in any way, and some of the specifics of how these scans work may be incredibly inaccurate. A PET scan is essentially an MRI, but a radioactive substance is injected into your bloodstream before the scan takes place. It then travels around your body via your blood and clings to cells that have a high protein value, which is a characteristic of cancer cells. I found this information out from the doctor when he asked, “Any questions?” after injecting me with a fortified iron syringe with large toxic symbols all over it. “What actually is this scan?” I replied, wide eyed and bushy tailed. He explained the above, then told me that I would be left for an hour in the room with the lights off, and that I needed to try and sleep. I believe this is to keep your blood pressure as low as possible, as this ensures that the radioactive substance adequately clings to any cancerous cells in your body.

That was the longest hour of my life, and I definitely didn’t sleep. It dawned on me that this was quite a serious test, and it was the first cancer-specific test that I was having. I thought about my family and how much I loved them, and about how lucky I was to have met Anna in the previous year. Everything positive had a sombre feel to it. The more you have to love, the more you have to lose. At the time it felt like an overreaction, and I mocked myself in my more sober moments. I knew something bad was happening though and I felt powerless against it. It was the start of a dark week.

At this point I still believed that the issue had mostly been identified: I had a cyst on my pancreas that was so big it was blocking the bile duct from my stomach. This was stopping bile leaving my body, resulting in enzymes leaking into my blood which shouldn’t have been there (not a medical professional, do not hold me to account on the specifics). It was the high levels of this enzyme that was picked up in my blood tests at A&E. This condition is called jaundice, and it was the reason I was struggling to eat and felt extremely weak. Another symptom of jaundice is yellowing of the skin and eyes. Since experiencing it, I have wondered if the creator of The Simpsons purposefully made his entire character catalogue jaundiced. It isn’t a lot of fun and I don’t recommend it, and I can’t watch his show without suffering from PTSD.

A few days went by, and I didn’t hear anything about the PET scan. All of a sudden, I got a call from the endoscopy department at King’s College London. They told me that my endoscopy was being “re-prioritised” for the following week, November 3rd. This concerned me, but I was happy it was going to be done soon. Anna and my mum told me not to jump to conclusions about why it had been reprioritised. Perhaps they had a cancellation. I wasn’t so optimistic. The next day the specialist called me from King’s for a general chat about how I was. At the end of the call, I asked her if she had received the PET scan results. “Are you sitting down?” she asked. I said I was as I paced my front room, gritting my teeth through the growing sense of dread.

“The scan picked up a localisation in the expected area” she said. Unfortunately this phone call didn’t come with a translator so I had to dig further myself. “What does that mean?”, not an unreasonable question in context. “The scan detected a localisation in your pancreas. The good news is it that it hasn’t spread outside of this area”. I wondered if I was still speaking English. Does cancer also impact your ability to comprehend language? “So do I have cancer?” I replied, hoping that would do the trick.

“You have a cancerous tumour but we believe it is a rare form of cancer which has an extremely high recovery rate”. I stood there for a second and contemplated; Anna had run into the room and was staring at me. “So I do have cancer?”, it had to work this time.

“Yes, you have cancer”. She finally shut me up.

The Road to Diagnosis: Part 1

On November 22nd I happened to be watching BBC news as a special on Pancreatic Cancer was featured. It was an uncomfortable watch for both me and my family, but we persevered through and I learnt a lot of unpleasant information. Pancreatic Cancer is extremely deadly as it is difficult to detect, and is often found too late to give the individual a chance at fighting it. This is primarily because the cancer is mostly asymptomatic. I already knew that I was lucky to have been diagnosed, but the various examples I heard in this feature demonstrated just how lucky I am, and how much I have to be grateful for. It lead me to ponder over my road to diagnosis and view it in a totally different way. 

Before, I had felt let down by many of the medical professionals who I had seen about my issues. The feature highlighted to me that in fact, I was incredibly lucky. The average age of a person being diagnosed with pancreatic cancer is 78, they are typically diagnosed when the cancer has spread far beyond the pancreas and treatment is at best difficult, if not completely futile. It is also more common in people who have had a chronic drinking problem. Therefore, my diagnosis is extremely unique: I am 28 years old, I run marathons regularly and, despite my best efforts throughout my teenage and university years, I have never had a chronic drinking problem. Further to this, my cancer had not spread from the pancreas despite pancreatic cancer being an extremely aggressive cancer. It was described to me as an “ugly” cancer by a few medical professionals: a true lesson in euphemistic language.

Ultimately, this change in perspective has overhauled my ability to be positive in the face of the tragic news, and I truly feel happier than ever in spite of the cancer. I hope that you enjoy sharing the journey with me, and that you revel in the final message: that positivity is a choice, and an extremely empowering one to make. It is attainable in the most challenging situations, even where it may take more time and mental effort to achieve and sustain.

My story began in September 2020. I noticed that my abdomen felt tight when I lay down to go to sleep at night, and remained so when I woke up in the morning. The symptoms seemed to subside when I got up and moved around again and I assumed that the issue was linked to an eating allergy that suddenly came on. Still, after 2 months of this discomfort, I saw a specialist under my private health insurance – a benefit I had with my previous job. He suspected that I was constipated. I did not struggle to go to the toilet each day, but he explained that constipation is about more than that and may be due to food moving slowly through my bowels. I proceeded, unconvinced.

I had an ultrasound of my abdominal region which did not uncover anything worrying. I had another follow up with the specialist to discuss the next steps. He turned up 40 minutes late to the appointment and seemed extremely disengaged, making no eye contact with me and staring down at his desk whilst I spoke. Safe to say, I felt like his interest in my issue was similar to that of a neighbours car alarm going off at 3am – he knows that he should care as it may indicate something bad is taking place, but it’s also not entirely his problem (despite being paid a large sum of money to make it his problem). 

I left feeling totally deflated. I was already working to a diagnosis I was not convinced by and now felt that the specialist had little interest in seeing past his theory. Of course, some of this insecurity was because I thought there was nothing serious wrong with me and that I was also wasting both of our time; it is easy to forget that now I know that I do have pancreatic cancer. He told me that the next step in the process was a colonoscopy. I picked up the preparation kit for the procedure and left the hospital, certain that I would not be seeing that man ever again. I had no interest in doing the colonoscopy and was convinced that this was an issue I’d have to sort out by myself. The discomfort continued over the following months, with me trying various diet changes and eating behaviours to control it. None worked, but the issue did not seem to get any worse.

In around May 2021, I decided to have another go with my local GP. She was much more engaging than the private specialist but was far more limited in what she could do. We agreed that the starting point was various blood tests that had not yet been done and take it from there. The problem with this process is that the results of blood tests are sent via text message. This text message was an automated message to the effect of “Your doctor has reviewed your blood tests. No further action required”. It is a closed loop of communication.  I may as well have received a text saying “There is still nothing wrong with you. Stop being a hypochondriac”. It’s certainly how it felt at the time. To move the process along, the onus is placed on the patient to ring the surgery again at 8am, wait in a phone queue, explain the ongoing issue to the receptionist and then wait for the phone appointment with the GP (assuming they deem your issue requires a conversation or, god forbid, a face to face appointment). Naturally, I gave up again, assuming any more tests would lead me nowhere.

October 2021 is when the symptoms suddenly escalated to an undeniable level of severity. I had run a 35 mile ultra-marathon on the Saturday and was enjoying a well earned week off running. On the Tuesday after the ultra-marathon I decided to go to the gym and do some abdominal exercises, before heading home to have dinner with my girlfriend and a good friend who was visiting. 30 minutes after eating a meal of tofu and noodles, I got extreme pain in my abdomen. I was keeled over on the sofa, struggling to breathe and forcing back tears. The episode lasted about 15 minutes, but a dull pain remained in my abdomen that I never really got rid of again until my first surgery. 

These episodes of severe abdominal pain continued to happen throughout the week, regularly resulting in me crying and feeling utterly helpless. I rang 111 on 3 separate occasions and each time was informed that I need to head straight to a centre, but needed a referral from a specialist beforehand who would promptly call me back. The first time I called 111 was at 21:30 on the Tuesday. I woke up to a missed call at 6:00am on Wednesday. I then looked up the definition of the word “promptly” just to confirm that it hadn’t changed. It was well over the hour I was promised it would take. Luckily (for my own sanity), I was asleep. It was yet another chip away at my optimism, and my confidence that the issue would be resolved continued to wane. I am not trying to blame any individuals here, but there is clearly something wrong with the process. Whether it is another example of the health service being pushed too far with lower funding, or is the result of the coronavirus epidemic raising demand on services, I am not sure. All I know is that I was told my issue was critical every time I rang, but I never received the follow up that I was told was required to go to a specialist centre.

The following Monday I had been on my bed struggling to breathe for 3 hours. My dad called me to discuss something trivial, and quickly became animated hearing my condition. He convinced me to go to A&E. I finally saw the severity of the pain as untenable and needed to act. I should point out that my dad has had a problem with his back for the duration of my entire life and has never even considered going to see a professional about resolving it. He used to lay on the lounge floor in severe pain in the evening, utterly convinced that his back was created broken and that nothing could be done to change that.

I arrived at Lewisham A&E and was promptly asked to wait in the Covid safe waiting room – some benches outside the hospital under a tent. After 30 minutes of waiting, the security guard called me in to talk to the receptionist. Safe to say, she wasn’t convinced this was serious based on my history of “trivial” abdominal issues. I heeded her warning that the GP would only prescribe me painkillers, and raised her a counter-suggestion: that the GP might just acknowledge that ANY pain which results in you struggling to breathe may need more than painkillers. We agreed to disagree, and I told her I would take my chances and wait.

After 3 hours I approached the nurse at the window and stated that I was leaving and to take me off the list. The receptionists words had resonated with me, and I was feeling worse dealing with pain in a not-so-pretty hospital waiting room. At least at home I can struggle to breathe in a comfortable bed, rather than try to suppress any pain I am feeling, in fear that the other ill strangers might throw me a concerned glance, or think I was behaving weirdly. Oh the social pressure I was under. The nurse behind the desk was extremely lovely. She told me I was next in the queue and that I would be seen shortly. I was encouraged to wait and told my problem needs investigating. It really saddens me knowing that this nurse may not be aware of how valuable her words were that day; she may be the first true intervention in this story that could lead to a 28 year old man surviving pancreatic cancer. Her actions epitomise the responsibility we all bear for each other in this world, and how “benign” things such as our attitude and choice of words can influence another’s path in the most critical of moments.

A modest 40 minute wait more and I was called into the GP’s office. She asked me for a history of the issue. Without being prompted, she told me that my issue was very concerning, and that others may struggle to uncouple them from the previous issues experienced. She inspected me and, importantly, requested blood and urine samples. The urine sample quickly showed no issues. “Here we go again” I thought… I went into a nurses office to do the blood test; something that always turns me into a babbling child. The first time I had a blood test at my local GP, I was woken up on some grass next to the surgery by an old man. He told me he had watched me flop to the ground like a sack of potatoes, and said I was white as a ghost. I stumbled the 200m home with him helping me and then my mum picked me up from the doorstep and immediately threw some sugary tea down my throat. Luckily, I haven’t ever passed out from one again, but I have the same nervous reaction every time. And I have had A LOT of blood tests at this point.

Before returning to the waiting room, the GP gave me some codeine and told me the results will take approximately 30 minutes. I’d never taken codeine before, and I hadn’t eaten anything since midday… it was now 21:00. Safe to say, the next 45 minutes in that waiting room floated by. I observed strangers, flirted with the vending machines and wondered what special drug might eventually cure my obnoxious abdomen. Suddenly my eyes noticed the GP running across the room, and was surprised when her final destination was right in front of my very chair. ”You need to come into my office”. Finally – the magical Abdominal Pain Purifier 3000 Prescription Tablet Set was going to be issued to me and I could be on my merry way, abdominal issues resolved.

She said something along the lines of “Your liver functioning is very poor. You have a dangerously high level of an enzyme in your blood that should not be there. They may operate on you tonight – you need to be inspected by the specialist staff immediately”.

Well fuck, that didn’t go to plan…