16 Years On

If you must work,
Work to leave some part of you on this earth
If you must live, darling one.

Just live.

Keaton Henson – You

Yesterday was my transplant anniversary. Sixteen years ago I was battling to live. Without the bone marrow transplant, I would die from my leukaemia. Having it could have led to the same end game.

I never quite know how to feel on my transplant anniversary. There is too much tied up in that single day. So many memories, so many emotions. Regret at the life I have led since. Fear at what the future brings. Hate for the depression and anxiety it triggered in me. Joy at being here still.

Yesterday for the first time ever I forgot. I did not wake up in the morning with the anniversary the first thought pressing away at my mind. I did eventually remember and when I did, I mourned deeply like I haven’t for a long time.

People see me as a survivor, as someone brave. Most people seem to have forgotten that it ever happened to me. I never forget. Even 16 years on. I was not brave. It was not a choice. I had something living in me that would kill me. I could either let it or I could have treatment. That was my choice. Not being ill or surviving it.

People see the happiness of me still being here. Being alive.

And I do too.

I am here. I am alive when many others have not been so lucky. I breathe, I smile, I cry. I live. And that is more wonderful than I could ever put into words.

But I also see the scars. I see the physical ones when I look in the mirror. The scar from my hickman line, the loss of pigment in my skin and hair resulting in patchy skin and white eyebrows. I feel it in my hands that are so bone achingly cold sometimes.

I feel scars too. The fear when I think about the minute possibility of the leukaemia returning or the long term effects of my treatment. I mourn for the me I was before. I live every day with what it has cost me, the price I paid for it with my mental health. I carry the constant reminder that my brother (my donor) is no longer alive. That he could not save me again if it did return. The bittersweet knowledge that in some way he is still alive in me.

There are many scars. I wish I could forget them. That I had found the meaningful new way of life post-transplant that I see so often in inspirational stories about people who have, like me, faced death.

But I haven’t. I am still stuck trying to find my answer to dealing with my post-transplant life.

I am still here though. And I need to find a way to live this life