Memories of Max - A Father's Story

Chapter 5 - Freedom

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When we eventually left the hospital after three and a half months of continuous treatment, we were nervous of the path ahead. Some of the biggest problems encountered by the families of childhood cancer patients occur when the treatment stops. The great umbilical cord was severed and we went back to the outside world. In reality it was not completely severed because we had immediate access to the hospital at any time. Psychologically, however, we felt very lost and alone.

When Max had his second cancer I used to find it difficult when families talked about how great life would be after treatment ended. It was a major goal. It had been for us but the reality was different. In many ways, life after treatment was more difficult than during it. During treatment there is the support of the hospital and other parents. During treatment there are very immediate hurdles which have to be cleared. After treatment there were no immediate hurdles. Instead there was a grey cloudy goal. Our goal was that Max should not relapse within five years. At that time, five years clear of AML suggested that the disease was unlikely to re-appear. That is a very long term objective when you have to live with that thought every day. The waiting was interminable and very difficult and there was no-one who really understood how we felt. What could you say to those parents who thought that salvation came immediately after treatment ended? For their sake I said nothing.

After Max’s leukaemia treatment finished and we left the Royal Marsden Hospital I rang the on-call doctor and during the conversation explained that we had been released a week earlier. She jokingly reprimanded me.

“We don't release patients, we discharge them. Release is what happens to prisoners.”

“We were there for nearly four months, it felt like a release.”

The world acted as if the treatment had ended, the disease was cured and life would continue as normal. This is not true. Life goes on, but it is never the same as before. You watch and wait. Constantly.

We went back to a strange house which seemed like nowhere we had ever been before. In the same way that you step from a normal life into the alien world of children’s cancer, you also have to make the transition back again.

What do you do now? Despite the short time span we had become almost institutionalised. It was very odd. We had, without being aware of it, become totally dependent on the hospital.

Our lives had revolved around the regime of the Unit. There was the timetable for meals, for Ward rounds, for giving drugs, for lights out and they became part of our daily life. Our closest friends became the fellow parents and patients and slowly our lives became geared to that of the Unit. We had been suddenly introduced into this new life and had slowly adjusted to it. Now we were suddenly removed from it. This loss of support can result in the collapse of your coping mechanisms.

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