Candid With Cancer #8 – My Second Cancer Diagnosis
Thomas Ashley details his battle against AML as part of a new weekly blog
After being diagnosed, a plan of action was being put into place which would change my life in a heartbeat, for the rest of my life. And I know it’s hard to see the positives, but I hoped one day it will be for the better. Though I wasn’t thinking it at the time, I would have no idea the person I would become after this and the person I am still becoming.
That evening I was transferred to BCH (Birmingham Children’s hospital) and placed on TCT (Teenage Cancer Trust). A ward specialised for teenagers going through cancer, so we can somewhat live as normal a life as possible whilst going through, what some would describe, hell. I didn’t actually realise how ill I was at this point, but I was very ill. So, I arrived on the Tuesday, after hearing something you thought you would never hear, in a hostile environment and no idea what the future holds. I remember looking around, the fancy chairs, the pool table, more dignified bays to ‘live’ in. But as I said before, I didn’t know what was going on. And deep down, I was still hoping this was all a big misunderstanding. That actually, somehow, I don’t have cancer and they made a mistake. But that wasn’t meant to be. And I guess this is where the story starts then. The beginning of my ‘new life’. The story of the person I became and how I became ‘him’.
On the Wednesday, I went into surgery for a bone marrow aspirate. A procedure I would become very familiar with. Through tests with my bone marrow, they would be able to determine what cancer I had, and the course of treatment needed. As well as the bone marrow being taken, I was also given my first bit of chemotherapy in my spinal fluid and brain. More as a precautionary procedure. After I came around, for the rest of the day, it was just a waiting game, trying to become familiar with where I was staying and trying to comprehend what was going on. It just didn’t make sense. I couldn’t make sense of it. How do you?
On the Thursday, my doctor took myself and my mum and dad into a private room. Though I knew what was coming, nothing could still prepare you for what was next. I was given my full diagnosis and the course of treatment I would need. That last little bit of hope I was just clenching onto, quickly extinguished. That was it. Confirmed 100 percent. I have cancer. I actually have cancer. Just how? And why? Why me? Why do I have cancer? What did I do to deserve this. I’m just a kid wanting to live my life!
The full diagnosis was Acute Myeloid Leukaemia (AML). AML is a rare form of blood cancer, which needs an extremely intense course of chemotherapy over the course of around 6 months. AML is a mutation of one of your white blood cells in your bone marrow, where all your blood is made. After the mutation, which no one knows why it happens, it starts to destroy your immune system. I was told everything. The fact I would be in hospital for 6 months, that I would be ill like no illness I have ever had, I would miss school and wouldn’t be able to see my friends. My body physically, would be as if I was reset to nothing. And this was the case.
One thing, I was never told or warned about, was the effect of all of this. The affect this would have on me as a person. On my mental health, for years to come and to this day. And how it would affect me in every walk of life. It was just painted over, as though it didn’t exist. That it didn’t matter. Imagine being told you could die, at any stage of the process, when your only 15. As though I would have my treatment, hopefully survive, and just pushed back out into society as though nothing had happened. The pain I have suffered because of this is indescribable. And now when I look back on this, it kills me to know what I was going to have to face. I knew the physical complications, well as much as they could tell you, but you didn’t know what was going to happen to you. You’re development, mental health, hormones etc. But these were questions I didn’t have at the time. Because your first point of call is getting through it. But no one told me. No one prepares you. If I knew what I knew now, maybe I would have given up. Maybe that’s why they don’t tell you.
On the Friday I needed to have surgery to have my central line put in. A line goes under your skin to a large vein by your collarbone. This would then hang out of my chest. And I can’t begin to explain how painful this was and restrictive. But this was necessary as I couldn’t have chemotherapy through a vein in my arm. At the end of the line, there were two connection ports which would attach me to the drugs I needed via a drip.
I was supposed to have my central line put in in the morning however, due to an emergency, my operation got pushed back. But before I started my chemotherapy, I needed to do a sperm bank. Another complication of chemotherapy was losing your fertility. And though at the time, there was too much and I was too young to question this, this was something I had to come to terms with later in life. At the time you just go along with everything, because you don’t have a choice. And only being 15, you don’t really understand the significance of being infertile. It’s only now I start to question it. But I went to do my sperm bank and this was the first time I was allowed out since Tuesday. A relief but at this point, I was becoming extremely ill. Very weak, losing weight and struggling. The cancer was taking over.
On the Saturday, having had my operation late the night before, I was woken up at 6:00am to start my chemotherapy. And that’s how my life changed and was flipped upside forever, within five cruel days. Even writing this, I don’t feel I can convey the pain, shock, exhaustion, disbelief and everything else that happened in the five days and continued to follow in hospital. There are not enough words and experience to understand. I can’t even understand it myself.
Just know, it is something I wish that no one should ever have to go through. And I mean that. I wish I could be able to let you know what it was like. As that would answer a lot of questions everyone has and myself. But that would make life to easy, wouldn’t’ it? All I can say to you is, try and imagine it then times it by 100. That’s how bad it was.