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

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The Life in Your Years

 


“It’s not the years in your life that matter…it’s the life in your years.” – Abraham Lincoln (*possibly*)


I had a completely different article in mind to write today. Instead I came across this article on the BBC website about journalist Helen Fawkes who died earlier this month.  It talks about how she faced her cancer with a ‘list for living’, blogging about her experiences both with cancer and with life. It made me cry as all too often stories like this do, I cry for myself.

This is quite a raw post for me to write and I feel more exposed and vulnerable than normal. I had a bone marrow transplant in 2001 for chronic myeloid leukaemia and have spent the 16 years since often grieving for the life I thought I would live before I received my diagnosis.  I have spent those years torn between fear of living and fear of not living enough. I am often paralysed, stuck between wanting to live, to experience this life to the full and yet unable to do so, terrified of what could go wrong.

I lost me after my transplant, I lost that person with dreams and plans for the future.  I wasn’t that person anymore and it took a whole lot of hard times, of fighting to get back to ‘normal’, to realise that person had gone and I was causing myself harm by holding on to that image of me.  Eventually I stopped looking back so much and looked for who I was now, for where I wanted life to take me.

My mind had other ideas though. It was almost like it saw me getting hold of myself and putting myself back together…and didn’t like it one little bit.  So it threw health anxiety into the mix.  Understandable perhaps given what had happened to me, the physical effects my treatment continues to have on me, the death of my brother and of Phillip’s parents.

Still it is one of the hardest things I have ever had to cope with. Constantly worrying whether this or that is a sign of something that is going to kill me, sheer overwhelming panic that I am going to die and the battling that goes on between my fear of doing anything and my fear of not doing anything, of not doing enough. I am tired of living like this.

So this article about Helen who faced her diagnosis with such a positive and open attitude really got to me.  She lived her life knowing her time was limited and determined to fit in as much as she possibly could. I cried for the years I feel I have wasted in not grasping hold of this life with both hands. It is such a brief, amazing, fleeting life we live and I am so aware of a need to make the most of it.  Too aware maybe.

I can’t do anything about what is in the past. Those years, all that time I feel I have wasted, well that is unchangeable.  And the future, who knows.  All I have is now, I need to stop worrying and put more life into my years.  So I am going to borrow Helen’s idea of a ‘list for living’ and fill it with things from the normal to the possibly impossible.  I don’t want a bucket list, that feels too much like having to achieve a list of things before I die.  I want things to aim for, I want to celebrate this life and I want to live it not simply be alive for it.

When my list is more than an idea, when it itself has life, I will share it with you. For encouragement, for support, for the sheer kick in the backside I will probably need to push through my worries to actually do this.  If you have any suggestions for my list, share away please!

If you are interested in reading about Helen’s story in her own words, take a look at her blog.