Twenty months in hospital...

Simone Katzenberg thought her bone marrow cancer could be swiftly dealt with. Here, she describes the continuing, agonising battle

Telegraph 16 June 2004

Glad to be alive -Simone Katzenberg: 'My sons have been very brave and strong. They have supported each other and become responsible and independent. It hurts me terribly that they have had to suffer the trauma, and I want to do my best to make up for the lost time'

Monday, March 11, 2002, was just a normal day. I went to work, as usual, at a solicitors' practice in London, where I am a family law specialist. Afterwards, I went to my martial arts class, and then home to my husband and three sons. But the following day, I went to see my doctor to collect the results of blood tests he had taken after I complained of feeling exhausted and weak -and he told me that I had bone marrow cancer. I returned to my office, and set up an out-of-office e-mail reply to say I would be away for two weeks.  On Wednesday, March 13,1 was admitted to the Royal Free Hospital in London, and began chemotherapy. More than two years later, I am still hoping to return to work one day.

I was diagnosed with Waldenstrom's Macroglobulinaemia, a rare form of bone marrow cancer. My disease proved to be unusually aggressive and resistant to drugs. Seven cycles of five different types of chemotherapy over eight months had no effect on the malignant cells, which populated 95 per cent of my bone marrow. By the summer, it became clear that the only chance I had - albeit a small one was to have a bone marrow transplant. I was fortunate that my only sibling, my brother, was a perfect match. But with the transplant came the risk of developing severe graft versus host disease (GVHD), which itself has a high mortality rate.

I had the transplant on November 12, and developed severe GVHD, which seriously affected my gut, liver and skin. I was in hospital continuously from September 2002 until August 2003, and was desperately ill. I had to undergo many unpleasant procedures. I pleaded with the doctors not to hurt me, telling them that I have a very low pain threshold and was scared. But, sometimes, they did; they couldn't help it. Instead of getting used to it, I found each procedure harder to endure than the last, as I knew what to expect. For months, I was linked to a morphine pump. I quickly lost count of the number of blood transfusions I had been given and I almost glowed from all the X-rays and CT scans. Small scars are scattered all over my body from the biopsies and internal lines.

But my mind has been kind to me. I remember little from the periods when I was very unwell. Unfortunately, my mother, my brother and the few close friends whom I allowed to visit witnessed the horror. I looked like a monster - I had no hair and was bright yellow with jaundice from the attack on my liver. My skin was mottled like a reptile's and I was overblown from high-dose steroids. Retaining 10kg of fluid, I felt like the Michelin man and was so weak that I couldn't even lift a hand. I shrank into hooded sweatshirts my eyes, dark hollow caverns. For a time, I stopped communicating with anyone. I think that being silent, still and withdrawn was the only way my body could cope with the struggle to survive that sapped every bit of energy.

I was linked up to an IV stand (which I came to call "Robert") through which I was fed and given drugs intravenously. Neither a drop of water nor any food passed my lips for more than seven months. My gut atrophied, I was nauseous and threw up regularly. The gastroenterologists suggested I take a sip of water every hour; I couldn't even do that. When I asked if I would ever be able to eat again, my doctor replied: "I don't know." I had been bedridden for so long that I couldn't get from a sitting position to standing, let alone walk. Massive doses of steroids weakened my muscles and made me so tearful that I couldn't even speak. After spending 20 months in hospital on and off, I became institutionalised, and was frightened of being alone at night.

I hardly saw my children; they hated the hospital and I hated them seeing me as I was. I wanted to protect them from the awfulness of it, yet I missed them desperately. Last year, I missed all their birthdays. But my mother was with me constantly. My brother (ironically, a haematologist) flew over from New York every weekend, not knowing whether I would make it to the next. The bond between us has always been close but it strengthened even more while I was in hospital. Without the support of my family and friends and the medical staff at the Royal Free, I do not believe I would have been able to maintain the strength to carry on. Indeed, there were times when I thought I simply could not continue. I begged the doctors to show me one person who had been through what I was going through and lived. I needed a strand of hope to hang on to. But they couldn't.

Despite setbacks along the way, I have survived and all my major organs still function. Slowly, I am regaining my confidence and strength. I have learnt to walk again, albeit in a wobbly fashion, and I feel better every day. My gut has recovered and, after much perseverance, I now eat everything and anything, although I won't be wearing a skirt for a while, as my sparrow legs are still very thin. It is a miracle, but I am not out of the woods yet.

Hopefully, the GVHD will continue to be controlled by drugs until it burns out. The doctors don't know how long that will take. I go back to the hospital three times a week for treatment, and will take anti-rejection drugs for at least another year. While on the drugs, I remain susceptible to infection, so I can't go the cinema, theatre or to a concert, but I know my time will come.

Last October, I was rushed back into intensive care when the GVHD viciously attacked my liver. Fortunately, due to treatment that is still being trialled, the attack was halted and the damage was not irreversible. I spent January in hospital after the GVHD went to my lungs. Even as I write this, I am conscious that, next week, I could get an infection and not recover. I therefore have a sense of urgency that I must do what I can when I can. But I am sure that, in time, I will get back to the old me, or perhaps an even nicer me.

"I looked like a monster. I had no hair and was bright yellow with jaundice. My skin was mottled like a reptile's and I was overblown from steroids"

Today, for the first time in a very long time, I feel well, and have a zest and determination for life that I lost during the darker moments. Occasionally, I wonder if the past two years really happened to me, and I get scared about the future, but I have learnt to take life one day at a time. I feel very lucky, and it doesn't take much to make me happy these days. I am starting to get my life back together, and am very keen to get back into the real world. I can't wait to drive again and I love going out, being with friends -doing normal things.

My disease has had a devastating effect on my family and friends. My sons have been very brave and strong. They have supported each other and become responsible and independent. I hope that my being honest with them has helped them to cope. It hurts me terribly that they have had to suffer the trauma, and I want to do my best to make up for the lost time.

Two weeks ago, I went upstairs to wake my youngest son and wish him a happy birthday. He was 11. Warm and bleary eyed, he asked: "Did you come upstairs by yourself, Mum?" When I nodded, his face filled with a huge smile.

To join the bone marrow register, contact the Anthony Nolan Trust, tel: 0901 882 2234, or see www.antkonynolan.org.uk ; or the Sue Harris Bone Marrow Trust, tel: 020 8342 8733, or see www.shbmt.org.uk . To give blood, contact the National Blood Service, tel: 08457 711711, or see www.bTood.co.uk