Cure Leukaemia Named Flutter UK&I Charity Partner
The announcement will see Cure Leukaemia work alongside Flutter UK and Ireland for the next 12 months
After my first round of chemotherapy, I was supposed to have another one, to prepare my body but having been so healthy and getting the cancer early, I didn’t need a second round. I could have a couple weeks out of hospital and then start the process for the transplant. I wasn’t prepared for the transplant; I don’t think anyone can be. How do you prepare? But I expected the worse and I got the worse, and more. I went in at the end of May, into my own room on this ward where I would be in isolation for 4-5 weeks. I started a week or so of this special chemotherapy, which was the worst. That’s all I can say.
After that, I had my transplant. June 6th 2017. The actual transplant only took 30 minutes. The rest was hell. What went on in that room for the next 4 weeks was awful. Physically and mentally. You are trapped and you can’t do anything. Can’t go anywhere. Can’t even leave the room. You were lucky if you could even get out of bed or talk. And if you could, it would only be staring out the window. Just like the first time in hospital, everything was a chore. Eating, cleaning, living. It was no way of life. No one could realistically live how I was living. Those 5 weeks in in isolation were the longest and worst ever. Worst is an understatement. It was gruelling and cruel and more. I was finally released from the room and hospital at the end of June. And it was amazing to be out. But there was a toll on my body, my health and my mental health. The process wasn’t over.
Even though I had left hospital; I wasn’t allowed to see anyone for at least 6 months. I couldn’t go anywhere, do anything or see anyone. Because of my immune system being brand new, like a baby’s immune system, my risk from infection was sky high. And just like I said previously, an infection would kill me. On top of that there were serious diseases which could kill you. One of them being graft vs host disease. Something I live in risk of my whole life as well as having cancer again, as having had it, you are most likely to get it again. Even though I was at home, I was travelling back to the QE every day or every other day, on some of the worst medication I think anyone could have. There was this one called Cyclosporin, which is an immunosuppressant which helps the host accept the new transplant. For me it was like swallowing used cigarette buds. 4 of them a day for 6 months.
On top of this I was having another 20 tablets a day. It’s hard to not forget, I was ill still as well. I remember the journey, back and from the QE, too well. And to this day, it is a journey I struggle to make. The associations I have with the whole journey, the scarring and trauma from it. I can’t do it. Even when I am not ill and make that journey, I become ill. I have made that journey for 6 years, consistently, and it gets worse. I don’t know how to describe it, or why it happens but I wish I knew why.
Even though all this was going on, one thing I knew what I wanted was to get my A levels done and move on in life. And that’s what I did. I didn’t go back to school till after Christmas 2017 but I had tutors that I could see when I was at home. I did 2 A-Levels. A lot of this period is a blur to me. It just happened. I put in 100% just so I could stop the suffering and move on. I don’t have any memories from school between 15 and 18. All my memories are the experiences I had to go through and the raw pain from them. They are the ones I remember because they are the ones which hurt the most.
All through my time in hospital I knew I was changing, though I didn’t want or haven’t admitted it. I knew mentally I was changing. Having experienced what I have, to be on your own for that long, to get through it yourself, to miss out on the important parts of your development. At the time I knew these things were happening. To be isolated and keep yourself company. You change. I can see where some things come from with how I am today. Being on my own, keeping myself to myself because I had to. There is a lot. I just don’t want and didn’t want what I had been through to be the reason I am like this. But it is. That is hard to come to terms with because I am still Tom. I am me and I promise.