Memories of Max - A Father's Story

Chapter 6 - Reactions

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Their remoteness also created additional problems. Sara and I felt that we were doing something positive in contributing towards Max's treatment. Our families wanted to do the same but felt very helpless because they were so far away. They also had the added disadvantage of watching our suffering.

Our families visited as often as they could. This too created problems. It is physically and emotionally exhausting nursing a child with cancer. There are logistical problems as you try to juggle everyone else's needs around your own need to be with your child. When people came to visit there were the problems of meeting them, feeding them and getting them to and from the hospital.

I became totally and utterly dedicated to Max to the detriment of all other requirements. This created friction between Sara and myself and is definitely not the best way to cope. Unfortunately there are no clear set of rules. You go with what you feel to be right.

I became resentful of visitors and found them an intrusion on my ability to cope. I wanted everything to be under my control. This was yet another defence mechanism. So much of the control over our lives had been stripped away. We were totally at the mercy of the progress of the disease and its treatment. To compensate I needed an unnatural control over everything else in my life. This is not the benefit of hindsight, I think that I knew this at the time, but it was my way of dealing with the situation.

I also grew resentful of the phone calls which we received. People would ring for news about Max’s condition. I was grateful for their concern, but they did not realise the strain that the calls put on us. Sara and I would take turns nursing Max and alternatively spending a night at home. At night the phone rang incessantly. Sometimes, after a completely sleepless night at the hospital, I would return and spend a couple of hours talking on the phone. When you are run down and emotionally low it is very demoralising having to explain the latest downturn to caller after caller. After a while we deflected some of the calls by asking people to ring the family for the latest news. The phone calls affected me far more than Sara. She often liked to be able to talk to people as a vent against the events that we were experiencing. Again it is a case of what suits one person may be totally unsuitable for another. Eventually I bought an answer-phone and would often just let the phone ring while I tried to wind down from the day.

I have described some of our reactions and those of our immediate family to Max’s illness, but we also witnessed some other very diverse and sometimes disturbing reactions.

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