Still Standing this #WorldCancerDay.
Today is World Cancer Day. This time ten years ago, I was feeling pretty pleased with myself. I’d been diagnosed with leukaemia the summer before, and had made it through three rounds of chemotherapy and a stem cell transplant relatively easily. I had very few of the horrific side effects, and thought I’d got away with it. I didn’t know that in fact, my cancer story was just beginning.
I’ve told my tale enough times for it to seem superfluous now. Leukaemia, stem cell transplant, relapse, stem cell transplant, graft vs. host disease, liver failure, liver and accidental stem cell transplant, photopheresis, biliary reconstruction, sepsis, pulmonary embolism, collapsed lung, pneumonia. And that’s just the bare bones of it.
Anthony Nolan found my second stem cell donor. Without them and him, my transplant would not have gone the same way, my body would not have reacted in the same way, and my liver and third stem cell transplants would not have happened. I would almost certainly not be here. Not only did they find me a donor, but they have been a continued source of support after my transplants.
In 2016, their Patient Services Team offered me the opportunity to become a Young Ambassador for them, a role in which I am able to use my experience to benefit other people who will receive transplants in the future. My goal is for nobody receiving a stem cell transplant to have to go through what I have, because although I am still here, it has by no means been easy. I have survived, but at times it has felt like that is all, and to really live is something just out of reach. We all deserve the chance to live.
I am not ashamed to say that sometimes it is very difficult. It is no secret that people with chronic illnesses can struggle with depression, and prior to working with Anthony Nolan, I was beginning to feel like despite doing my best to raise awareness, I was not having much impact, and I could not see a purpose for the life I had. I did not feel the world would notice if I stopped. But now I do. Maybe not the entire world, I am not quite so egotistical to think that, but since I started working with Anthony Nolan, I feel like I have been able to make more of a difference, most of all when I have been with them to parliament to speak to people who can really force change for the way stem cell transplant patients are treated in this country. So not only did Anthony Nolan give me a chance at life, but they gave me a reason to live.
A lot has changed in the past decade. When this all started, I was a teenager, completely self-involved yet oblivious to the fact that I was harbouring a fatal disease. Now, I'm still self-involved, but more out of necessity than narcissism, and only too aware of every horror occurring in the wider world. I would say that is partly down to the technological leaps made in the last ten years (for example, I had a flip phone back then), but also due to my personal growth. I'd say it's almost impossible to confront your own mortality and not be changed by it.
Most immediately, I learned to appreciate my family. Nothing says I love you like a mother who will get up to turn you over in the night when you've lost all your muscle mass, a sister who will donate her own stem cells to try to save your life, and a father who continues to work to support a household alone and spend every minute he can with you too.
I've also learned a lot about grief. When you become a cancer patient, you become intimately acquainted with it. I have been to more funerals of friends than I can count, and that is something usually said by people sixty years my senior. It doesn't get easier. It never hurts any less. Even when you know it is coming, you can try to prepare yourself, but you are never ready. Last year I lost a friend I truly loved and the world is a darker place without him, but I am trying to use each day to make him proud and I am so grateful to have known him, even though grief is the price I pay for the privilege.
And I am have grieved for myself. This is not the life I planned, expected, or hoped for. I have lost people I never got to know - the partner I might have loved, the children we could have had. It was a choice I had to make: lose them, or be lost. I wasn't ready to leave, so I chose the sacrifice.
For all of it, I think I am lucky. I am loved and have people to love; I have enough bodily function to get by, and to enjoy the things in life I like; I know what is important, and who will be with me until the end of the line. For the most part, I am comfortable, and I am happy. It is not our circumstances that make us what we are, but our choices. I choose to celebrate the life that I have, rather than mourn for what I do not. In a week’s time, I am hosting a night of comedy called Still Standing at Union Chapel with my incredible friends Nish Kumar, Suzi Ruffell, Josh Widdicombe and Sara Pascoe in order to raise money for Anthony Nolan and remember how wonderful life can be. Tickets are available from the Union Chapel website here.
