Our living hell

Emma Bowes Romanelli was 19 when she was given a devastating diagnosis. Doctors told her she had acute lymphoblastic leukaemia and she would be lucky to survive the week. She did survive, but luck had little to do with it. Radical, intensive treatment saved her life, but ravaged her body, leaving her in a permanently frail, shattered state.

She has now written a book about her experiences, Between Angels & Demons, which is to be published by Next Century Books in September.

This is her story, but her mother has a very different story to tell.

"She has always been a gifted writer and certainly has a positive message of hope for others," says Ann Bowes, the new minister for Brafferton, Helperby, Myton-on-Swale, Thormanby and Pilmoor. "My message, if I have one, is very different. The book is Emma's way of dealing with things. But there is another side to the story. In fact, there are at least six other sides to the story."

This was a reference to the way her daughter's illness impacted not only on her own life, but on the entire family - her mum, dad and four younger siblings.

"We have all been seriously affected," she says. "The other children have had such a lot to deal with from a young age, but they have come through. When I retire I shall write the story from my point of view, as a novel. It's strange, isn't it, how sometimes you feel freer to tell the truth in fiction?"

In the meantime, however, she is happy to talk about her experiences and her continuing struggle to come to terms with what has happened to her eldest child.

As a former hospital chaplain, Ann knew the symptoms of leukaemia and recognised them in her ailing teenage daughter long before the doctors did. But even then she was not prepared for the diagnosis when it came.

The strain of leukaemia Emma contracted usually strikes children before the age of seven and is often fatal within weeks. She was 19 and had been ill for at least six months, but still the prognosis was not good. With little chance of her surviving more than four days, radical treatment was the only option. It was literally going to be kill or cure.

"I can honestly say I thought she was going to die," says Ann, "but no one else would acknowledge the possibility. There is this belief that we should think positively at times like this. But this doesn't give you permission to react realistically.

"People wanted to comfort me, but I didn't want to be comforted. They wanted to tell me everything would be all right, but I knew it would never be all right again."

Emma stayed in hospital for year. She was subjected to an intensive combination of cytotoxic (chemo) drugs and cranial radiotherapy. Doctors told her if she survived that, there would then follow a further two years of oral and intravenous drugs. After that, there were still no guarantees.

"I have got serious issues with what the treatment did to her," says Ann. "It was too harsh. But in those situations you are powerless and vulnerable. You basically have to do what the doctors tell you.

"I was terribly afraid of them using radiotherapy on her head, and I think my fears were justified. The treatment damaged her very badly. She now has only two hours a day when she has the energy to get out of bed. She's living with a kind of chemically-induced AIDS.

"I know she feels lucky to be alive, but it is not as simple as that for me. It is terrible to see your daughter suffer what she has suffered."

Both Ann and Emma feel there is inadequate provision for teenage cancer sufferers (a percentage of the profits from Between Angels & Demons will go to the Teenage Cancer Trust). Although Emma was 19 when she was diagnosed, her family feels she should have been given the same support offered to children and younger teens.

"Yes, she was an adult, but she was still too young to deal with this," says Ann. "She had to handle it herself from the word go because the doctors told her first and not us, so we didn't even have a chance to prepare her. This was momentous stuff for someone so young."

But Emma did deal with it and continues to deal with it with the help of her husband, Lorenzo, who she met at Oxford University, where she studied English between treatments at Stoke Mandeville Hospital.

Her siblings, Jeremy, Hannah, Tim and Will, have also had a lot to deal with. Tim has still not fully addressed his sister's illness and cannot bring himself to read her book; and Hannah recently told her mum she used to think her parents wished she had been ill instead of Emma.

Ann and Paul's relationship did not escape unscathed either. She had to give up work for a year to look after Emma full-time, leaving her exhausted and the family coffers seriously depleted. Thankfully the couple are now closer than ever, but their continuing financial problems mean they are now living hundreds of miles apart.

Ann is a house-for-duty minister in North Yorkshire, which means the church provides her with a house but no income, while Paul remains in Bedfordshire, trying to sell the family home and his bookshop to put them back on a sound financial footing.

"The effects of Emma's illness just go on and on," says Ann. "We are very lucky that she has such a wonderful husband, so we can all have lives of our own, but the scars of her treatment remain vivid for all of us."

Some people may be surprised by her continuing anger, by her only marginally-diluted bitterness and by her complete lack of self-comfort. They may even question why someone with such a strong faith should find her daughter's illness so difficult to deal with.

But, while Ann is a minister, she is also a mother and a realist who has learned from her own experiences that pious platitudes don't help anyone.

"I don't have all the answers, and I have learned not to pretend that I do," she says. "But I do know that this was not God's will. Our lack of care for the environment has done this to my daughter. We are to blame, not God."

Emma in her own words... and those of others

On being diagnosed with acute lymphoblastic leukaemia...

"For an instant the world forgot how to turn. Then reality and reason got up and left the room. The door banged shut behind them."

On being told about the gruelling treatment ahead...

"If the disease itself did not get me then the treatment might well do. Up until then I could host friends and family freely, could have flowers in my room, still belonged in part to the world outside; afterwards I belonged to them. I nodded in pretence of comprehension, and thus, like Faustus with the Devil, I made the pact."

On surviving...

"As far as I was concerned, my survival was a given. The real horror resided in the fight that lay ahead. The next few years seemed like an eternity - an endless landscape of pain and fear from which I could surely never emerge as whole."

On having cranial radiotherapy...

"They told me that if I moved, even the tiniest fraction, the Beast would take my thoughts, my intellect, my emotions and my capacity to live and burn them out of me forever. So I screwed up everything very tight within me and kept still. And because I held on to him so tightly, Fear stayed very quiet and still too."

On losing her hair...

"One terrible morning daddy awoke to find me standing barefoot on the lawn, my flimsy nightdress teased by the early summer breeze as the morning sun cast its shadows into the new day. But I didn't see him. I didn't see the sunshine, the shadows, or the new-green leaves that danced on that playful breeze.

"I saw only the blackness inside and knew only that I couldn't wait any more. So I reached up and tore at my scalp, tore out in handfuls the soft baby-blonde that clung tickling to my warm tears as it fell. I didn't stop until every last strand was freed and the waiting was over."

On her relationship with God...

"God is my friend. He was already living in our house when I was born and, undoubtedly blessed with the patience of Job, a phenomenal capacity for forgiveness and a notable sense of humour, He has continued to remain in residence ever since.

"Sometimes when I feel the wind on my face I know that God is speaking to me: His reassurance comes not in words but still He is reminding me that He is, and always will be, there.

Deep down I hear Him."

On her family...

"Selfishly, I was glad that if any one of us were to be so dangerously sick, then it was I. To watch one of the others suffering would be anguishing; to be isolated from them in that suffering would be intolerable. I had never been so conscious of the depth of my love for them all."

On life...

"This book is a celebration of life's journey; of the twists and turns that face one on one's path; of chance, coincidence, opportunity and 'fate'; and of whatever it is that lies just around the next bend. My life is still extraordinary because it is still mine to be lived."

Emma in the words of others..

The Duchess of York, who she met at Stoke Mandeville Hospital, in her foreword to Between Angels & Demons...

"Emma's day-to-day battle with leukaemia is told with candour and honesty, and her endearing humour shines through the pages of this inspirational and moving book.

"Her indomitable spirit and deep belief that there was a future beyond the end of the world carried her through this devastating ordeal."

Lorenzo Romanelli, who she met at Oxford, on his wife's love of life...

"Emma is physically badly weakened by the drugs and radiotherapy that saved her. She suffers near constant pain and the restrictions on her life increase as time passes. Yet, while I snarl my way homewards, weary after work, I know I will once again soon be face to face with the life-force-girl, brimming with excitement over the tiniest detail of nature, the faintest whisper of hope on the wind."

Between Angels & Demons by Emma Bowes Romanelli will be published by Next Century Books next month

Updated: 09:33 Tuesday, August 03, 2004