Memories of Max - A Father's Story

Chapter 6 - Reactions

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As parents we were confronted with the horrors of our situation and our varied reactions reflected the way we felt.

How did others react to our situation? Generally people reacted with care and sympathy but this was not always the case and the following chapter tries to convey some sense of our own reactions and the reactions of others that were experienced during Max’s cancers.

Childhood cancer is not a Child and the Rest situation. There is no separation between the patient, the family and the illness. There is ‘The Family’ and ‘The Illness’. The illness is like a parasite. It slowly gains control over your lives and over time you become at one with it. When this was explained to us by the nurses I remember thinking that I would be able to stand back and look at the situation dispassionately. It seemed so logical. If the treatment was progressing and if Max was suffering solely from the drugs then this would be obvious. Sometimes this was the case, but generally such detachment was just a fantasy. I had not realised the strain of the sleepless nights and the emotional stress which accompanied the treatment. I had no idea. No-one really does until they experience it for themselves.

The start of Max's second cancer left Sara and I feeling as if we were spectators on someone else’s nightmare. Our whole world became very unreal and events appeared remote and as if they were happening at a distance. It was like an out of body experience. We felt that this ‘cannot be happening to us’. But it was.

This was some sort of defence mechanism. Events became so traumatic that we dissociated from them. It used to worry me. What would happen when we truly took on board the enormity of our situation? The true significance of our plight only really sank in a couple of years later. Your perspective is distorted whilst in the eye of the storm. It is only looking back that you comprehend the full extent of the damage.

I had another reaction which started after Max’s diagnosis and continued until long after his death. This was a mental partitioning of the world around me. My world became divided into two categories. In one was my family and the desperate little band of parents and children at the Royal Marsden Hospital and in the other there was the Real World. I found it harder and harder to reconcile these disparate perspectives.

When I walked into town, I looked at all the people walking around leading their apparently normal lives. I felt like an alien. I did not belong here, I felt I was different. I wondered what people thought when they saw me. I was just one of the milling crowd and no different from the rest. Inside I had this desperate urge to scream at the top of my voice “My child has cancer!” I had a desperate need to let everyone know how my life had fallen off the edge of an unimaginable cliff. I wanted to tell them how it feels to be the parent of a child with cancer. I wanted to grab them, shake them and ask if they really knew how I felt.

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