What being diagnosed with Leukaemia feels like – three years on

So it has been three years since that day… the day when one life ended and another began.   When I was in that hospital room with what I thought was some sort of infection and the consultant came in with tears in her eyes to tell me I actually had a very aggressive form of Leukaemia and that they would need to treat it aggressively, starting that very same day.  Wait… what?  Yep and some days I still can’t get my head around it.  That day I was told my fertility would be affected, my organs were in danger of long term damage, the very treatment they needed to give me could be fatal, I would be spending the next six months in hospital, the Leukaemia was likely to have spread around my body including my brain and even a simple everyday infection could prove life threatening.

At the time I did not know that the 21st April (the day I was given my diagnosis) was World AML Awareness day… how timely of me to get the diagnosis on this very day!  In fact I didn’t know anything at all about Acute Myeloid Leukaemia (AML) whereas now I’m quite the expert, having devoted much of my time to understanding it, sharing my story honestly and listening to other patients’ experience of the disease.  Early on I found myself wanting to arm myself with knowledge… knowledge is power and I never realised the true meaning behind this until recently.  At first I didn’t understand what was driving me but now I know it was the need to feel in control of this life limiting disease.  This cancer that came barging into my life, trying to get the better of me, developing in my bone marrow to literally shut me down like a hostile takeover.  Now I am better equipped, calmer because I have ‘it’ (AML) firmly around the neck,  staring ‘it’ straight in the eye as an equal opponent.  Whereas when I was given my diagnosis to say that I was on the back foot is a massive under statement.

The life I was living before my diagnosis has gone and that has taken some coming to terms with.  I’ve lost many things, some that I never could have predicted and so wrong that I still struggle to accept.  The best way to describe it is that its like you no longer fit into the life you are supposed to anymore, so much time has gone by since you were at home, you have been through so many frightening medical situations during your treatment and you feel like a stranger in your own skin.  You don’t even recognise your own face in the mirror and physically your body is incapable of carrying out the most basic every tasks such as washing and dressing.  I remember being terrified of going supermarket shopping for the first time after I finished treatment in case my weak legs gave out.  I even spoke to a friend about this particular fear and she offered to come and rescue me if it happened!  I’ve had to overcome many obstacles like this, each one testing my already compromised strength and mental willpower.

In many ways my diagnosis has been utterly devastating but it has opened my eyes, my mind and given me a confidence that I’d always wished for. They say every cloud has a silver lining and this has definitely taught me that.  This cloud is still hanging over me, every single day, but its silver lining is also present.

I have never celebrated, not at any point, not when I achieved remission, finally left hospital or hit any of the little milestones along the way.  I can’t because I no longer trust my own body, remission is not as good as it sounds and I will never ever have what I had before, what I took for granted… my health.  AML has a high relapse rate and the statistics don’t fill you with confidence.  Pretty much every day I am terrified at the thought of it, when I wake up and it hits me yet again.  Because at the age of 39 I was suddenly shown how wrong I was to assume that I still had an indefinite amount of life left to live.  My mortality was slammed into my consciousness, uninvited, no longer unseen, something I didn’t think about much because I was not old enough to think about my own death.   Yet now it is something I can’t ignore, I was taken right up to it and I know exactly how it feels to be scared to death.  No one can imagine how utterly, bone chilling this is unless they have been through something like this.

There are numerous set backs some that you don’t see coming, shocking you to the core and some that don’t surprise you at all.  Like hurricane season they keep coming, after recovering from the first one that came my way, naively thinking that it would be the last I was dismayed to find there was another one waiting to whip me up and throw me off my path again.  I am getting used to this now and am working on acceptance.

A leukaemia diagnosis, especially one that is described as ‘the deadliest form of blood cancer’ and ‘rapidly fatal’ has a profound affect on you.  I have really dark times, when I am literally paralysed by fear and anxiety so I have to talk myself down from the edge, calm the terrified butterflies badgering me from within.  Then there is the guilt that comes with it because of the effect this has had on my daughter (8 at the time I was diagnosed).  The questions I’ve been faced with have made my stomach drop to the floor… like ‘I am scared I will get cancer because you got cancer’ and ‘I am scared you are going to die’.  Then there are the times of dismay when you hear that yet another fellow AML patient has become a casualty to the disease.  You can’t understand why you survived and they didn’t when there is no difference between you.  They were exactly like you, with a child, a husband, a family and friends, so what made you so special, that you got to live and they didn’t.   Nothing at all, just fate and fate is nothing to be relied on to keep you safe… safe is something you never feel again.  The realisation of this, every time, scares the hell out of me.

I’ve feel like I’ve lived so much more in the past three years than I ever did before because it’s given me the confidence to say no to what doesn’t enrich my life and it’s unbelievably liberating.  In the past I gave up far too much of myself to dissatisfying, deflating situations whereas now I still give up my time but I do it for people who appreciate me and my contribution.

Now I know my purpose, know my worth and will honour those who didn’t survive by living a meaningful life with kindness and generosity.

I am stronger, wiser and certainly more alive… I know that my life has to have purpose. I can not, will not walk away after my life was saved and do nothing for future generations, blood cancer patients and survivors.

Every day I am grateful and living life at 100 miles an hour because deep down I am under no illusions that life is to be taken for granted… it is actually a precious gift that should be used wisely and lived fiercely.

Many, many thanks for taking the time to read this post… please leave a comment as I am always happy to hear from you… ButterflyinRemission

Understanding Acute Myeloid Leukaemia & its treatment