Our health experience: ‘On that cold day in December I learned the fragility of human life’

Michelle Bell was diagnosed with leukaemia when she was six months pregnant. Her sister donated bone marrow to help cure her

Michelle Bell (left) at her home with her sister, Tina Kennedy. Photograph: Joe O’Shaughnessy
Michelle Bell (left) at her home with her sister, Tina Kennedy. Photograph: Joe O’Shaughnessy

Michelle: “People have often remarked how brave I am, but I don’t think I am brave. I think I am a normal person who had no choice but to get on with the treatment.”

On December 21st, 2010, I was diagnosed with acute myeloid leukaemia (AML), an aggressive form of blood cancer. I was 26 weeks pregnant with my first baby.

Prior to that, my husband and I were incredibly excited to be expecting our first child. I had been to the doctor the previous day because I was feeling unwell. My gums were bleeding and my appetite was poor.

That day started off so normal and ended in such heartache. That evening my consultant, Prof Michael O’ Dwyer at University College Hospital Galway (UCHG), told me that I had AML and that without immediate treatment I would have very little time to live.

I cannot possibly begin to explain the devastation that I felt. Anyone who has been through getting a cancer diagnosis will understand the fear, the sense of anxiety and the utter sadness and shock that comes with such a diagnosis. I was being told all this while a tiny little person was growing in my body.

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I cried for days. My husband and family were devastated.

One of the hardest things was telling my mum and dad. As a mum myself, I know it is every parent’s nightmare, no matter what age their child is.

On the night I was diagnosed my mum called me to see what the consultant had said. At this point my family knew I was in hospital and, like me, they were very upset. I had found out about an hour before my mum called, but I told her that I would not be finding out until the morning as I wanted my parents to have one more good night’s sleep. My mum seemed to believe me, but I know now she knew in her heart that I was very sick.

On Christmas Eve I started chemotherapy, which involved four rounds of treatment and complete isolation, with the hope that the first treatment would get me into remission. My first round of chemo was really tough. I worried from the moment I woke about my unborn baby. The only thing I cared about was his survival.

My hair fell out. My baldness exposed me in a way I could not hide. It screamed “cancer” in a loud voice and I had to accept that I had a long way to go before I would be well again.

A month later, on January 18th, 2011, my beautiful miracle baby was born. He was 10 weeks early, but he was perfect. We had happiness and joy in our lives once again. All thoughts of leukaemia drained from my body. I now had something much better to focus on. We had our precious son. We named him Harry Michael Bell.

This tiny baby gave us such love and hope, and I was determined to get better so that I could go home to him. That same week I was told my cancer was in remission but I had to stay in hospital for further treatment. My three sisters and my brother were all tested to see if they were a match for me. Thankfully, my sister Tina was a perfect match.

Eight weeks after Harry was born he was discharged from hospital but I had to remain in hospital. I was absolutely distraught that I could not be the mum I needed to be.

It was one of the hardest times I ever experienced. On May 12th, 2011, I was finally discharged from hospital. Life returned to normal, my husband returned to work and I started feeling like the old me.

But then in early April 2012 I started feeling very unwell and I instinctively knew the leukaemia had returned. I would have to be in isolation for months, and away from my little boy.

I knew that if the treatment did not work, my little boy would grow up without his mum, and I was inconsolable.

Two days after my world had turned upside down for the second time, I began chemotherapy again and literally just took it day by day. This time the treatment involved chemotherapy and a bone-marrow transplant.

I was very fortunate that my sister Tina was a perfect match. After nearly three months in hospital, I had my bone-marrow transplant under the care of Dr Conneally in St James’s Hospital in Dublin on July 16th, 2012.

I longed to see Harry, but I knew in my heart that I needed to be in hospital. I was feeling so unwell at the time, but nothing could control the mouth pain I experienced.

The doctors had warned me that this is one of the side effects of the conditioning treatment for the transplant, but honestly I have never experienced anything like it. I had ulcers all over my mouth and down my throat, and the pain was horrific. The pain was so intense that I could no longer speak, so I communicated by writing things down.

I was discharged a month after my transplant. Four months later, I developed graft versus host disease which is a complication of having a bone-marrow transplant. The new, transplanted cells regard the recipient’s body as foreign. The treatment for this is high-dose steroids. I found the side effects very difficult to deal with.

Dealing with cancer is so hard, and my family and friends were wonderful. People have often remarked how brave I am, but I don’t think I am brave. I think I am a normal person who had no choice but to get on with the treatment in the hope that it would cure me.

It is nearly three years since I relapsed and I am doing really well. I cannot pretend that this journey has been easy. It has been enormously difficult.On that cold day in December, I learned the fragility of human life. I struggle with the unknown, and am wary each time I feel sick.

People remark all the time that “You look great” and “You would never think you had cancer” – and yes, maybe that is true. Make-up and clothes can hide a multitude of scars. My scars are not visible. They have eaten me up inside but gradually, day by day, they are fading and that is a good thing.

Thankfully, my life is good. I am happily married to my wonderful husband, have amazing family and a wide circle of friends and I consider myself so lucky to be here. Our little boy Harry is the love of our lives and he makes me smile every day. My favourite thing in life is the sound of his footsteps coming in to our bedroom every morning, even if it is 4am. He makes life worthwhile.

I don’t know how I can ever thank my sister Tina enough. She saved my life and the words thank you do not seem sufficient, but she knows how grateful I am and she means the world to me. My sister has given me my life back, and for that I am eternally grateful.

Tina “As soon as the cancer came back, there was no question but that I was going to be a donor.”

My brother, James, and I drove to UCHG the day after Michelle was diagnosed. It was the time of the terrible weather. The drive took us four hours.

We met the clinical nurse specialist, who mentioned the possibility that Michelle would need a bone-marrow transplant down the line.

We were asked if we were willing to be tested to see whether we matched. There is a one in four chance, if you have four siblings, that one will be a match.

In the first week of January 2011, James and I went down to Sligo General Hospital and had our bloods done. It was a no-brainer for me. When it was mentioned that perhaps I could be a donor, I said, “Of course, I’ll do whatever I can.” I was found to be a match, but at that stage Michelle was in remission.

As soon as the cancer came back, there was no question but that I was going to be a donor.

The biggest thing to consider when you are a bone-marrow donor is the psychological factor. I had it in my head that if it doesn’t cure Michelle, it will be my fault, that my bone marrow wasn’t good enough.

I had to do everything I could to get myself as well as possible. In St James’s Hospital, they are excellent. They tell you what you have to do. You have to be the fittest and healthiest you can be, in terms of diet. I had to get my iron and haemoglobin levels up. The doctors did not want me to be on any medication. This was the best-case scenario for Michelle to get better.

When it came to it, I was admitted to St James’s Hospital on a Sunday night and her transplant was due for Monday. The harvest was taken very early on Monday morning under general anaesthetic.

I felt uncomfortable afterwards. I was given some pain relief, but it was no big deal. The recovery time is very quick. You forget about it. It’s just a bag of blood. If I was told that I wouldn’t be able to walk for a month, that’s okay too. You do what you have to do.

I don’t think in terms of having saved my sister’s life. Anybody in the same circumstances would do the same thing.

If I was asked to be a donor for somebody in another country, I would do it straight away. Who am I to decide how somebody should live their life?

Ronan McGreevy

Ronan McGreevy

Ronan McGreevy is a news reporter with The Irish Times