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.
7 thoughts on “The Road to Diagnosis: Part 4”
You really caught the essence in which I graced Brixton Hill Tesco express on that Monday evening! I’ll never forget the feeling when Anna rang me and told me the outcome of your second diagnosis Dan and the proposal. We were both sobbing (naturally) but the reasons for the tears were so conflicting. Will be here for you and Anna every step of the way!
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We could see you doing it, talking about it was one of the only things making us laugh at one point! I know you will – you’re amazing like that. Thank you so much, we’d be lost without you x
Hey mate. I discovered your blog today and have been reading ‘The Road to Diagnosis’ posts. Thanks so much for sharing your story – it is incredibly brave. My nephew had a form of Hodgkins Lymphoma aged 6, and now at almost 14 years old he is clear of cancer. He is the most resilient little dude you could ever meet, not phased by anything. I know by reading your words that you have found some of that resilience and humility in your own journey. I wish you all the best man, you can absolutely beat this. I look forward to reading more of your posts in the future 🙂
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I found your other comment! It just hadn’t been approved yet. Lovely to read it still, and no I have 2 wonderful comments from you so thank you so much for that! As I said, your nephew sounds incredibly brave and I bet that’s given him a resilience and view of life that he’ll never lose now. What an incredible guy. I have so much respect for him just off what you’ve told me alone. And I’m sure you witnessing them go through that made a lot of difference to you as a person too. Just being near it can have such an impact on someone. Thanks again for reading! Dan
Can I simply say what a comfort to uncover someone who really knows what they’re talking about on the web. You actually know how to bring an issue to light and make it important. A lot more people must read this and understand this side of the story. I was surprised you are not more popular given that you most certainly have the gift.
Just finished reading Road to part 4 .
My wife found your blog and recommended it to me.
I was diagnosed with pancreatic cancer a few months ago after several months of waiting for a scan and being passed from pillar to post . Like you I have endured several ‘unconcerned’ or ‘ uncaring’ medics and been left scared, confused and frustrated by poor communication and ‘ the system’.
I had a total pancreatectomy 8 weeks ago so now waiting with dread for chemotherapy.
Keep up the good work; it is great to know I am not alone and you understand completely what I and my family are going through.
I am feeling a bit low currently but will read the remainder of your blog with interest to try to reframe it all and some positivity back again.
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Thank you for reading – I’m not sure how therapeutic it is if you have gone through it all too, but I’m glad you know that you aren’t alone in your experiences. That’s definitely something I’ve learnt through people reaching out.
Wow – I had a total pancreatectomy about 10 weeks ago so it’s a very similar timeline! Currently waiting to start chemotherapy again too. Strange! I understand feeling low…it’s taking me so long to feel better, to the point that I’m really wondering if I’ll ever feel ‘normal’ again. I can’t eat without feeling sick and I’m just getting beaten down by it all. I’m told it will get better, though, so I just want to emphasise that to you too. I don’t know if you’re on Twitter, but if so, you can message me on there any time. Sometimes you just want someone to tell you that what you’re doing through is not abnormal, and I’m happy to be that person if it provides any comfort at all. Take care