'I was told I could die within days'

At the age of 19, Emma Bowes-Romanelli was diagnosed with an aggressive form of leukaemia. Twelve years on, she describes her battle to survive
Click to follow
Indy Lifestyle Online

" Well," said the doctor, "there is good news and bad news. Which would you like first?" Opting for the bad - it's always reassuring to know that there is something else to soften the blow - I waited. Almost imperceptibly, she hesitated. "The bad news is that you have leukaemia. The good news is you have a 50-50 chance of living beyond the next few days."

" Well," said the doctor, "there is good news and bad news. Which would you like first?" Opting for the bad - it's always reassuring to know that there is something else to soften the blow - I waited. Almost imperceptibly, she hesitated. "The bad news is that you have leukaemia. The good news is you have a 50-50 chance of living beyond the next few days."

It had all started so well. We grew up - Jeremy, Hannah, Timmy, William and I - in a rambling Georgian house in Bedfordshire. Our world, behind its mellow red-brick walls, was vibrant and chaotic, filled with books, art, music, overgrown gardens and mismatched crockery. I loved to sing, write, act and dance - and I did so through school and out of its gates, arms outstretched, to greet the world that was waiting for me. Three months later, the doctors told me I was dying.

It was acute lymphoblastic leukaemia (ALL), and with the diagnosis our red-brick walls came tumbling down. Our sunny world now revealed its dark and shadowy places. If such a deadly foe could creep up on us without warning, surely there was nowhere to hide.

My mother had sensed it coming. She saw something "behind my eyes", she said, and feared that the tiredness I put down to burning the candle at both ends wasmore sinister. Well, it was - so I guess it was really love that saved my life.

When my GP called back on the very afternoon of my blood test to say that the hospital were keen to see me the following morning, I skipped downstairs eagerly to let my mother know. While my schoolfriends had been fainting in assembly, having allergic reactions to chocolate and all manner of exciting things, I had remained sickeningly healthy. The drama queen in me had to look on wistfully as said heroines were carried limply out of school. Now it was my turn - and the hospital might let me stay overnight.

I didn't know then, that I might never have come out alive. After the diagnosis, they warned us that the chances were not good. The fact that I was still alive at all was a miracle, as they suspected I'd had the disease - an aggressive childhood cancer of the blood that can kill within days - for up to six months. Developing ALL at the age of 19 is extremely unusual. The illness generally strikes children under the age of seven, and the older the sufferer is, the more difficult it is to treat. To me, that meant that I was still here for a reason, and I was jolly well going to stick around long enough to find out what that reason might be.

In truth, "death" was, I think, impossible for me to comprehend. "What does it feel like to be dying?" I was asked by one young nurse, who came and sat by my bed before flitting off into the night and the "real" world. "I've no idea," I smilingly replied. And we both laughed.

But it was true. The only way I could comprehend death was to picture my family pointing to me in old photographs and saying something like: "That was my sister/daughter/niece, but she died of cancer a long time ago." And I simply wasn't ready to become history.

For my family, though, the grieving began from the moment I was diagnosed. I sensed it when my grandparents sat beside me on my bed and cried. I saw it in the faces of my parents, a dark shadow behind their loving smiles. And my brothers and sisters? Well, it is only now that we are all able to share the legacy of the demons of leukaemia - to talk about the anguish of standing by as someone you love simply fades away.

If the leukaemia didn't get me, the treatment - two-and-a-half years of chemotherapy and radiotherapy - would have a good shot at it. It was a kill-or-cure regime, and even if I survived the onslaught, there were no guarantees of long-term survival. For the first year, I'd stay in hospital almost entirely. Assuming I was able to achieve a remission, I'd then continue on a maintenance course of oral and intravenous drugs in an attempt to consolidate the effect of those initial months.

Much of those early weeks were spent in isolation. In effect, ALL is a cancer of the immune system; the white immune cells develop a deformity, whereby they reproduce (in a damaged form and progressively more rapidly) at the expense of the other cells in the blood. Immunity to disease is systematically destroyed - and the increasing lack of red blood cells causes the body to become starved of oxygen. Were it not for the fact that dying is usually precipitated by an irresistible infection, the untreated leukaemia victim would slowly suffocate to death.

The treatment regime seeks to destroy utterly the rogue white cells in the hope that the body will rally in defence and put forth a new bank of immune cells, minus the "blip". Unfortunately, the drugs they decided on would be unable to discriminate between healthy and deformed cells. As such, my entire immune system would be wiped out. Temporarily, they hoped.

When they said that some of the drugs - and one in particular, Daunorubicin - would make me sick, they didn't tell me that my body would be turned inside out, that my mind would warp with the anguish. Month after month, the lining of my tummy tore with the force of my retching. And, as my body writhed in an effort to rid itself of this evil invader, I knew that sometimes all you can do is stumble blindly in the dark and pray that, if your soul cries out loud enough, God will know where to find you.

And He was always there. I talked to Him mostly at night. Night-time in the underworld of the hospital isn't black with silver stars; it's a shivery grey, a cold, sad gloaming, presided over by a single fluorescent bulb that leaves you in a limbo between wakefulness and sleep.

In that limbo, I talked to God and to myself. He told me not to be afraid, and reminded me of all the trillions of cells in my body that resounded with life. And I could feel them fighting. Sometimes, when I thought hard enough, I could feel each cell quivering with the life that would triumph over death.

I thought about what lay on the other side of the vast mountain that stood before me: the green fields behind our home; the scent of the honeysuckle by my bedroom window; the bubbling of the stream that snaked along the edge of our ancient garden; and my interviews for Oxford University and a future beyond the end of the world. And we won! We really won! Me and the angels who fought with me - my parents, brothers, sister, and the battalions of friends who knew that the demons can never be allowed to win the war.

The challenge, we were warned, would be to achieve a remission of the cancer at all. So the bright December day they brought us the news was a day of celebration. The funny thing was that, for a while, everyone forgot to tell me. Doctors and nurses would appear in my room with beaming smiles, saying what a wonderful day it was. I smiled, bemused: from where I was lying, it seemed as grim as the one before.

Finally, I asked why. The answer was worth the wait. Though my body was not completely clear of leukaemic cells, they were reduced to a level that my immune system could cope with. Still, the doctors were cautious about predicting my chances of survival. It was just the first battle in a long, brutal war. Ultimately, we realised, only time truly determines the victor. But so far it's on my side.

Twelve years later, I'm still here. It's true that my body carries deep scars. The treatment that saved my life - in particular, the radiotherapy to my brain - has left my body severely weakened. There are complications with my endocrine and nervous systems, and my immune system is, in the words of a specialist I saw recently, "shot to pieces". A severe allergy to petrochemicals makes any expedition hazardous. I have radiotherapy-induced skin cancers, and we are warned to expect further degeneration.

But there is no doubt who the victors are. Though there are times when the pain is so bad that I wonder how I'll make it to tomorrow, and though much of my life must now be spent in bed, my spirit soars higher than ever. Without my illness, you see, my life would never have been so extraordinary.

I've always been an incurable optimist, always saw a silver lining. Since I was given a second chance at life, the clouds are luminous with silver. Even that old chestnut that "suffering makes you stronger" has truth in it. In me, there is the "knowing" that I have survived. I am learning about myself and life in a way I feel would have taken me 100 years without my illness.

Having a real enemy to fight gives you the chance to find the best in yourself - to rise up and show the demons what you are made of, and to know that every day that you live as richly as you can is a triumph. Even day-to-day things take on a momentous quality; each step is part of an epic journey, not just another tedious walk to the Tube.

Relationships, too, are extraordinary. I think it's because I'm vulnerable. That seems to allow people to be "real" with me. It bypasses the shield we all instinctively put up. Humanity is exposed - and so often it is a glorious beast that's just been waiting to break the bounds of all that superficial "stuff".

Above all, there are my angels - my family and friends - without whom this tale would have had a darker ending. Every day, I carry in me the knowledge that my life is a gift I must use fully and wisely. My life is still extraordinary, not least because it is still mine to be lived. And I really did live happily ever after. So put that in your pipe and smoke it, demons!

'Between Angels and Demons' by Emma Bowes-Romanelli is published by Next Century Books, £7.99