Chapter 11 - Terminal

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These are difficult issues to explain. After Max's leukaemia I remember trying to explain my feelings to a colleague at work. She became very heated and angry. She said she would do anything to save her child. I agree, but there are limits to how much pain and torture those little bodies should endure.

There is also the reliability of the terminal diagnosis. Again, this comes down to the mutual trust which exists between you and the consultants, doctors and nurses. We had spent a long time at the Royal Marsden Hospital. I trusted them implicitly. We had asked to be told everything, and I believe that we were told everything that could be told. We were told when they had no idea what was happening. We were told many times when they knew what was happening and the news was bad. They had been very honest with us. When we were told that Max was terminal, we had no reason to doubt them. You may ask yourself "What if they were wrong?" They were not wrong. We could see the evidence for ourselves.

During the Consultation we were asked what we intended to do about telling Max that he was terminal. He was playing outside and was not party to these discussions. Sara and I didn't know what to do. We had tried to brace ourselves for the reality of another relapse. Yet again we were not prepared. It did not seem real. We both experienced a floating out-of-body perception that we were not really listening to someone telling us that our son was about to die and said that we did not know how we would tell Max. We were too numb to react, to even think. Max was called into the room and the Professor started to explain the situation. It was done with the best of intentions and he meant well. He was trying to spare us the pain but at the time we did not really understand what was happening.

He told Max that the treatment had not got rid of all the bad cells and that this was bad news because the cancer had returned. Max was sitting on my knee and holding my hand at the time. He tensed and gripped me tightly. His face cracked and he was upset. Max always used the term 'bad news' when he talked about the possibility of dying. We thought that he understood that he would die. It turned out that Max completely switched off once he heard that the cancer was back and absorbed none of the ensuing conversation.

Later I felt a quiet numb emptiness. The sword had dropped, the waiting was over. We'd arrived. We'd crossed the Rubicon. We'd reached cancer Class Four. I kept saying to myself that it's not over until the Fat Lady sings, or in our case, the little boy dies, but it was very difficult to be positive.

Max later told me how unfair it was that he should have the illness again. That summed up the muted anger that I felt. So terribly, awfully, horribly, fucking desperately unfair that this bright, considerate, intelligent, happy, child with everything before him was now terminally ill with his third cancer.

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