How poetry helped me through my darkest days with acute myeloid leukaemia

Looking back

When I look back at my journey since I was diagnosed with Acute Myeloid Leukaemia (AML) in April 2024, I sometimes find it hard to believe how much my life has changed.

At diagnosis, I had 82% blasts in my bone marrow.  Almost overnight, I was plunged into a world of chemotherapy, isolation, fear and uncertainty.

What I didn’t know then was that I was about to spend almost 12 months in hospital isolation, separated from my family and fighting for my life.

Somewhere in the middle of all that darkness, I discovered poetry as a way to express all of the feelings of fear and anxiety I was carrying.

I never imagined that the words I scribbled in a hospital room to help me survive my darkest days would one day become a published book - transforming something born from fear and uncertainty into a source of hope for others, while raising money for Anthony Nolan and allowing me to give something back for the precious second chance at life I was given.

When day turned into night

My AML treatment was complicated and challenging from the very beginning.

After my first cycle of chemotherapy, I was told it hadn’t worked. I still had 58% blasts in my bone marrow.

The leukaemia was aggressive. I had refractory AML with two genetic mutations, and my chemotherapy would have to be escalated to something even more intensive and toxic.

But even after my third cycle of chemotherapy, I still had 28% blasts.  Nothing seemed to be working. Nothing was going to plan.  And slowly, I began to lose hope.

I was eventually told that a stem cell transplant was my only chance of survival. But first, I needed to achieve a deep remission - by becoming MRD negative - and then a suitable donor had to be found.  I remember feeling utterly terrified.

A stem cell transplant can feel like such a terrifying and distant concept when you’re lying in a hospital bed, facing months of treatment and isolation. Especially when your whole world has shrunk to four hospital walls.

For almost 12 months, hospital became my entire world.

In between cycles of chemotherapy, I had to fight off several life-threatening infections, including fungal pneumonia, neutropenic sepsis and E. coli.

My neutrophils were so low and I was so vulnerable to infection that I couldn’t even hug the people I loved.

Days dragged into nights, and nights blurred into days.  There were frightening moments, setbacks and so much uncertainty. There were times when I genuinely didn’t believe I would survive.

When you are in that situation, people often talk about being strong.  But the truth is, I didn’t feel strong.  I had never felt more afraid or vulnerable in my life.  Yet I rarely allowed myself to show it.

I felt that I had to put on a brave face for my family. I didn’t want them to see how frightened I really was. I felt that if I started crying, the floodgates would open and I might never be able to stop.  So I wore a mask of bravery.  But wearing that mask was exhausting.

Inside, I was carrying an overwhelming amount of fear, sadness and uncertainty, and I desperately needed somewhere safe to let those feelings out.

That’s where poetry came in.

Finding a voice in the darkness

I started writing words down during those long hours alone in my hospital room.

I wrote about fear.  I wrote about hope.  I wrote about missing ordinary life.  I wrote about the people I loved.  I wrote about watching the world carry on outside while my own world had completely stopped.  And I wrote about survival.

Poetry gave me somewhere I didn’t have to be brave.  I didn’t have to reassure anybody else.  I didn’t have to put on a smile.  I didn’t have to pretend that I was okay.  I could simply be honest.

Sometimes the poems were raw. Sometimes they were sad. Sometimes they were hopeful. And sometimes they were simply a few words that helped me get through another difficult day.

Looking back now, I realise that writing became a form of release.  It gave my fear somewhere to go.

It helped me process emotions that were sometimes too overwhelming - or too frightening - to say out loud.  And in a life where almost everything felt beyond my control, those words gave me back a tiny piece of control.

It gave me a voice at a time when I felt completely invisible to the outside world. Throughout those long months of isolation, writing made me feel seen and heard. It gave me somewhere to pour the thoughts and emotions I was feeling, and somehow make sense of everything that was happening to me.

The gift of a stem cell donor

Eventually, after seven cycles of chemotherapy and seven months in hospital isolation, I finally received the news I had been desperately waiting for.

I was MRD negative.  I had reached remission.  A stem cell transplant was now possible.

For the first time in months, I was able to leave hospital. I was discharged home for a precious month to spend Christmas with my family while arrangements were made for my transplant.

It felt like I could finally begin to see a way forward. I could finally dare to hope that there may be a future for me.

But then, just as I was about to be readmitted to hospital to begin my transplant, I received devastating news.  My donor had fallen through.

The person who had been identified as my match was no longer able to donate, and a new search would have to begin.  I was absolutely devastated.

Christmas was approaching and because it was so close to the holidays, it was unlikely that another donor would be found before the New Year.

After everything I had been through, I suddenly felt as though time was running out again.

I was given a cycle of maintenance chemotherapy as a bridge to transplant, to try to keep the leukaemia at bay while the search for a new donor continued.

Then, just after Christmas, came the news I had been praying for.  A new donor had been found. A 10/10 match.  Someone I had never met was about to give me the greatest gift imaginable: another chance at life.

I don’t think you can ever fully put into words what that means. When you are fighting for your life, the generosity of a complete stranger can become the difference between having a future and not having one.

My donor gave me that future.

They gave me the chance to come home. 

To still be called Mum. 

To watch the seasons change. 

To grow older. 

To laugh, to love, to live. 

To experience ordinary days - something that had once seemed so impossibly out of reach, yet suddenly felt like the most precious gift in the world. I will never take that gift for granted.

From hospital poems to Poetry for Purpose

After my transplant, I began looking back through the words I had written during those long months in hospital - and I started to wonder whether they could become something more.

Writing those poems had helped me through some of the lowest moments of my life. Maybe they could help somebody else too.

Rather than leave my poems gathering dust in the notebook where they had been written, I decided to self-publish them - and Poetry for Purpose was born.

It is a collection of poems written during one of the darkest periods of my life. But the book has become something much more positive. It is my way of taking something painful and trying to turn it into something meaningful.

The poems are for anyone who has ever found themselves in a chapter of life they never expected. For someone facing cancer. For someone going through a stem cell transplant. For someone living with fear and uncertainty.  For someone who feels lost, overwhelmed or frightened about what comes next - and ultimately, for anyone who needs a little reminder that even the darkest chapters can eventually give rise to a new dawn.

Turning survival into purpose

I wanted my poems to have a purpose beyond simply documenting what I had been through. So the book is also helping me raise awareness of blood cancer and the life-changing importance of stem cell donation, while raising funds for Anthony Nolan. 

Because my story could have been very different if a donor hadn’t been found.

Without my donor, I wouldn’t be here. And without my donor, this book wouldn’t exist.

There are still so many people waiting for their match. 

There are still families desperately hoping for the phone call that says a suitable donor has been found. 

And there are still people who don't realise that one simple decision - joining the stem cell register - could one day give somebody else the chance to live.

I want my story to help change that.

If sharing what happened to me encourages even one more person to join the stem cell register, then something incredibly positive can have come from the darkest chapter of my life.

Written in darkness, shared in light

When I wrote those first poems in my hospital room, I had no idea where they would lead.

I certainly never imagined that the words I wrote simply to help me get through another day would eventually become a book that might help somebody else through their own difficult chapter.

But perhaps that is one of the most incredible things about life. Sometimes it is from our darkest moments that we can become a source of light for someone else.

My AML journey changed my life forever.  It took so much from me.  But it also taught me not to take life for granted.  It taught me that an ordinary day is not ordinary at all when you have fought so hard to be here to experience it.

And it gave me a desire to turn my experience into something that might help others.

A tribute to my stem cell donor

The first poem in Poetry for Purpose is dedicated to the stranger who gave me the chance to keep living.  To the incredible person who joined the register and saved my life.

This poem says everything I want to express to my donor when I finally get the opportunity to meet them and say thank you!

Because of you, I am still here.

Because of you, I still get to be a Mum.

Because of you, I get to grow older.

Because of you, I get to write this story.

And because of that gift, I now have the opportunity to give something back.

Giving hope and giving back

If my poems can give hope to someone facing their own darkest chapter, remind a patient that they are not alone, or inspire even one person to join the stem cell register, then perhaps the darkest chapter of my life has found a meaningful purpose.

All author royalties from Poetry for Purpose are donated to Anthony Nolan and University Hospital Southampton’s Room with a View Appeal.

Every copy bought helps me turn something that was born from the darkest days of my life into something positive - supporting the organisations that played such an important part in giving me a second chance at life.