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.