Memories of Max - A Father's Story

Chapter 2 - The Unit

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“Oh well my child has Leukaemia Extremely Raris but we have the complication of Lesser spotted Segaitis Majoris. It's a nightmare, they’ve never seen it here before. It's only occurred once before in the known Universe.”

“Yes but I heard he is doing well. My daughter may never play basketball again.”

This tends to happen only between the first timer parents and initially I thought that it was because we lived in a an affluent area where this type of petty competitiveness can be common. On reflection, given that the catchment area of the Royal Marsden Hospital covers the whole of the South of England, I do not think that this is the case. I found it very sad and very difficult not to get caught up in it. The statements are issued as a challenge. It's almost as if the competitiveness of the outside world has wormed its way into this sad and beleaguered community. Why? What good does it do?

On reflection I wonder if it is a cry for help. Parents are desperate and alone and want others to know how they feel. In the Unit this is difficult because everyone is in the same situation. You have never been prepared for your child’s cancer and it is the worst trauma you can imagine. In this environment the closest people to you are the other parents. There is a need to express your desperation but it is being made to the wrong people. They know your desperation because their situation is the same or worse. I found it very upsetting to watch this little vignette being played out time and time again.

This does not happen with the relapse families. The parents of relapsed children know better. They have seen all this before. They live on a different plane. They have lived with cancer for too long. They know the score and the score is this : Cancer - Two, You - Nil. They have no time for this petty game-playing.

You listen to parents and the complications of their child's illnesses and realise that despite the smiles and laughter that everyone is in a very precarious position. Underlying those smiles lies a lot of pain, grief, and suffering. There is no certainty. Children admitted for their first cancer die. Children admitted for relapses live. In between these extremes, some live and some die.

When we were admitted to the hospital for Max's second cancer I started by answering parent’s questions about his condition and watched their incredulity. I told it as it was and with no embellishment. I soon realised that it was too much for a lot of people to bear and soon stopped. I felt that I had a responsibility not to destroy their hopes. I was in their position once and decided to pull back from telling parents the reality of our situation. I just used to listen to their story and mutter that my son had a tumour. However bad it is the first time, you cannot realistically envisage a second cancer. A second but different cancer lies beyond reasonable expectation.

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