Deborah and Rogelio’s story

Boom! A short chat with a consultant and our lives had changed forever. It was two weeks to the day since we got married, and on 19th July 2003, my husband, Rogelio (then aged 42) was diagnosed with chronic myeloid leukaemia (CML).

At first we thought the diagnosis was out of the blue, but looking back there were certain signs and symptoms that may suggest otherwise. We had a small family wedding and went to Edinburgh on honeymoon. It was lovely but worrying as Rogelio was clearly unwell. Some months back, he had been to the doctor complaining about fatigue and pains in his legs. Much to our disgust we were sent away and told he should get fitter.

On Friday 19th July, we went to Farnborough Hospital for Rogelio’s blood test. We assumed it might show he had an infection; never did we consider it could be cancer. We were just starting our lives together, surely this couldn’t be right? As soon as we got home, the phone rang and it was the hospital asking us to go back in. I must admit we were both scared. We packed a bag and headed to hospital admissions. Once we got there, we waited for over three hours to see the consultant who gave the confirmed diagnosis. Rogelio’s white blood count was 344 (normal is between 4 and 12).

I left my beloved Rogelio in overnight, sat up worrying endlessly, thinking about what this now meant for our future and us. He started chemotherapy that very next day. The next few months were rough; we read anything and everything we could. This is when we contacted Leukaemia CARE who were fantastic. Someone was always there to talk to and provide access to information.

Together we were strong, we talked through each step, each decision and each emotion we felt. The support we had from everyone was truly inspiring. From Autumn, Rogelio’s treatment would take place at King’s College Hospital as they were one of the few hospitals that offered Glivec (imatinib) a treatment for CML.

With my husband originating from Cuba and English not being his first language, I found myself playing the role of an advocate, the one who expressed our concerns or doubts, to ask questions and to feedback where necessary. I did anything I could to help him.

We had always wanted to try for a baby, it was natural that we wanted a family together and were determined not to let his diagnosis stop that. Given very little fertility advice throughout, we wondered how the chemotherapy would affect Rogelio and the baby. In late 2003, finally some good news, we were expecting a baby. We organised for the scans and one stressful week followed. This would tell us if the chemo and other drugs had affected the baby and also the week Rogelio would find out if the imatinib was working for him. Much to our delight, we found out we could expect a healthy baby girl and that the imatinib results were also very positive. We had a real future again.

Gabriella Anne was born on 11th August 2004, just over a year from Rogelio’s diagnosis.

It has now been ten years since Rogelio was diagnosed with CML. We still have to monitor his blood results closely but for now things are calm. He is in molecular remission, controlled by the drugs and only visits King’s College Hospital once every three months now.

Before cancer, in our early days as a couple, he promised me we’d be together for at least 40 years… I’m holding him to that.


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