The ward was so very busy that day, the waiting room was full and people were rushing back and forth hurriedly trying to get things done in a timely manner. I’m not sure if it was the stress getting to me, but I felt like I was seeing all the goings on through a weird lens. I felt distant but close to everything at the same time, my head felt full but also empty, everything just felt so overwhelming. But we were here in the waiting room, and so we waited and we waited, and we waited. We were waiting a very long time. I was becoming more and more tense by the second. My appointment time had passed and still, we were waiting.  Eventually my mum went to the main desk and asked if we would be being seen soon, and we were told that we would be next. 

Shortly after that, it was indeed our turn to see the doctor. He was kind, but frank, he was clear and honest, everything you could want from a doctor when you get bad news, and it was bad news. I had cancer, Adrenal Cortical Cancer (ACC). He explained that ACC is incredibly rare effecting only about one in one million people each year, that there were only two people currently facing a new diagnosis of ACC, and I was one of them. He further explained it was not in any way related to my NF1, answering perhaps for me, what was my most burning question. To that he explained there is no link between NF1 and ACC.  In fact, he said that only 3 people with NF1 have ever been known to have ACC. This was just typical really. Trust me to be the tiny statistic again. I’m always the medical anomaly. The doctor explained that whilst ACC was rare and often quite an aggressive cancer, we were in a good position in a way. The tumour was contained and, upon looking at the scan, did not appear to have metastasised. This of course means that operating will be simpler than it could have been. Although he did say that operating will not be easy and this will be a major operation.

The doctor was keen for me to meet my surgeon as soon as possible and in fact suggested that we all meet together not the following day, but the day after that. It all seemed so quick, and so although I was aware that the likely outcome of this appointment was going to be a cancer diagnosis, this all seemed so fast.

I was able to ask a few questions, although to be honest my mind was not fully engaged at that point, I was shocked and relieved in equal measure. I had as I said fully anticipated that would be the result of the appointment, but I think that still, a small part of me held on to the slight possibility that it might not be cancer.

I left reassured that we would meet again soon to talk through a plan regarding surgery and meet with my surgeon. The doctor had considered moving the appointment entirely so we could all meet together but wanted me to be able to have the time to hear the news before then having all the details of surgery thrust upon me. I am grateful that he did that. So again, off we went with more things to process, it felt so surreal walking out of the hospital into the big wide world, my world, having been turned upside down and nobody else knew. The people I was walking past all going about their lives, none of them having any idea that I had just been sucker punched with the news I think we all fear.

My mum had to leave us to go home, so, my partner and I went to grab some food, and head back on the train.

The following day I waited to hear about what do the following day for my introduction to the surgeon. I must have refreshed my emails one hundred and one times with no success. I had just about given up, maybe we would hear tomorrow? Maybe there was an emergency surgery that cropped up? I called my mum, about 8PM and we agreed I would call in the morning and, at least for now, to not worry and enjoy what was left of the evening.

Half an hour couldn’t have even gone by, and “ping” in came an email, we were to be in clinic the following day! At 11AM! I called my mum immediately, flustered, shaking and buzzing with anticipation. She was due to accompany me to this appointment because my partner had work commitments she had to attend.  So, it was arranged. We would be going back to London, to meet with the surgeon.

Needless to say, I didn’t sleep well at all that night. Soon enough it was morning, and my mum was at the door, ready to take the trip together back to London.