Patient Case Study: Matthew Cox (Bristol)
Patient Matthew talks openly about what is keeping him motivated during "the hardest time of his life".
I remember the day extremely well. I had gone in on the 5th March 2017 for a bone marrow aspirate. Something that was happening every 3-4 months. And throughout March, I was just waiting for results. They always say, no news is good news. The preliminary checks seemed to suggest this.
It was March 22nd, the day of the Westminster Bridge terror attacks. I had gone home at lunchtime as I had no lessons left for the day and was sat in the living room watching the news, to see what was unfolding as anyone would. At this point, I still had no idea what was to come. My mum was at home, as she usually is and my dad came home early, which wasn’t unusual. But then around 3pm, they both came into the living room. Which was unusual. They both sat down, either side of me and I thought I had done something wrong at school or someone had died. I didn’t expect what was next.
I believe it was my mum who told me. And just said that we had “got the results back from my latest bone marrow aspirate and I’m really sorry Tom but you’ve relapsed; you have cancer again.” They then both went on to say more and reassure me but at that point, it didn’t matter what anyone said. I was broken. I just broke down there and then. Just cried and cried. I didn’t want to believe it.
I didn’t know hearing you have cancer for a second time could be worse than hearing it the first time. It killed me. I was empty inside and all I wanted to do was die. And I am not saying that lightly. I couldn’t do it again. I knew how bad the first time was but I knew the second time would be worse. I knew I’d suffer again, not just physically this time but mentally as well. And I was scared.
I was scared I would and could genuinely die this time. I knew the survival rate. And I didn’t want to. The pain was unimaginable and you couldn’t just run away from it. I knew again, I didn’t have a choice and my only chance of survival, was going through it. But that doesn’t make it easier. I can’t physically or emotionally explain the pain and suffering I was going through at this point. There is no way to know unless you experience it. The suffering, The pain. The consequences. I have hoped I had never had to relive that day because how awful it is but also because I can’t find the words to explain it. And that makes it hard for me that people don’t understand me. That you won’t. There are no number of words that I could write to be able to fully describe what I was going through at this point. Just pain.
Later that day in the evening, I just went out and sat in my car in a co-op car park and cried. I didn’t know what to do. I was just… lost. I had just become a Prefect at school, which was what I always wanted, was going to South Africa, was finally sorting out my life and looking ahead to what was beyond school. What I had ahead of me. But it all got taken away from me. And I still can’t comprehend it. I lost so much that day. I lost everything… again.
I was given a date in April in which I would go into hospital and start my treatment. Easter was just around the corner, so I stayed at school but I struggled. I didn’t know if I should have left or gone but I did stay and had my inauguration for a Prefect and First Team dinner and carried on playing hockey. But I was dead inside. Just counting down the days. Knowing what’s to come or thinking I knew what would come. Everyone knowing I have cancer, treating you differently already. It just gets worse and worse. I was going to lose my hair again, my body taking a battering and if I wasn’t infertile, knowing I will 100% be this time. There is just so much. I just don’t know. You just wish you were unalive because it would make life easier for everyone. You’ve just lost everything and more… again. You just can’t stop questioning, why me? Why me again? What have I done to deserve this? I just couldn’t do it again.
When I went into hospital in April, I went to the Queen Elizabeth Hospital Birmingham (QE) because I was now an ‘adult’. I needed a stem cell transplant to replace my immune system and practically ‘delete’ my mutated gene. I was very lucky that my eldest sister, Eve, was a full match and donated her stem cells to me. Before the transplant though, I needed a lot more chemotherapy and ‘conditioning’ as they called it. There was a lot of paperwork to be done. And this stands out. As I am 17, I am the one responsible for signing my own life away.
There is a doctor and a nurse in the room, telling you that there is a high chance you can die from the chemo and the transplant, that the odds of survival with the type of transplant I am having are between 50-60%. They can’t promise you that you will live. That anything could happen. But you sign these sheets because you have no other choice. And this messed me up mentally then and now. No 17-year-old should be having to sign their life away, questioning their own mortality for the second time in their life already. I still remember that today. And it haunts me that I had to do that. It messes you up. It does.
It was a waiting game at this point, dreading what was to come because you knew what was coming. I knew how bad it was. I knew the processes that were to come. And the fact I couldn’t even describe it the first time, made this so much harder. Waiting for your fate, not knowing if you’ll even make it, but knowing what’s to come, is the worst. Like I said before, there aren’t words to describe it. It was the longest time of my life. Knowing what was going to happen to my body, having my central line put back in, missing school again, which I had worked so hard to keep up with. Knowing that I am going to be being physically sick and bed bound and exhausted. Not going to be able to walk on my own again. That I was going to lose my hair again. Just everything. But it was worse because there was more but you knew. You knew it was coming and it was happening. I couldn’t run. I wanted to. But I couldn’t.
Patient Matthew talks openly about what is keeping him motivated during "the hardest time of his life".
On Wednesday evening, the ATICUS Network in partnership with Cure Leukaemia was officially launched at the PwC offices in Manchester, in an event attended by businesses, clinicians along with a number of patients and their families.