I met a child who had relapsed nine times over five years. The disease had not spread, but kept reactivating like some demented alarm clock. I talked often with him and eventually met his mother. She told me that they were waiting for a final diagnosis. I saw the consultant go to talk to the parents around the curtained bed and then watched their reactions afterwards. They were utterly distraught. I realised that they had been told that this time there was nothing more that could be done to stave off the disease. You share a very small fraction of their suffering and pray and pray.
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The day after the mother had been told, I asked her how she was. I felt that I had to ask and to recognise their suffering. Even in the Unit there is often the shunning defence of denial. If you don’t ask then you can deny to yourself the reality of the situation. Observers often shut out the reality because it is too much for them to bear. By saying something, however difficult and ineffectual, I felt I’d shown that I cared. This family had suffered so badly over the years. She told me their situation and I listened. What an earth can you say? I am lost for words to describe what they had been and were going through. I was lost for effective words to reply to this distraught mother so I just listened. Often that is all you can do.
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On another occasion I talked to a father whose child had a brain tumour. The child was suffering from MRSA which is a bacteria resistant to most antibiotics and the bane of many hospitals. In a cancer ward where the patients have a minimal immune system it is life threatening. I tried to help him be positive. Max had also had suffered from MRSA and had survived. I tried to encourage him with Max's success. As the conversation progressed he asked me more about Max's illness. If I was ever asked directly about Max’s history then I would volunteer the information. For me lying was too close to self-denial and if asked a direct question I would answer truthfully. I told him what had happened to us. At the end of a brief and very potted history of Max’s cancers he replied, “I was feeling down until I talked to you but I never thought it could get to this.” Nor did I. At the beginning of this conversation I realised that he wanted someone to talk to and needed consolation. The resulting conversation was not exactly solace but in a strange way it helped him.
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Around these distraught families are the nurses and doctors who hold sway over your child's balancing act between life and death. I generally found them to be exceptional in their jobs but despite their proximity to so many cases, I do not believe that the doctors and nurses can ever really appreciate what happens to families under these circumstances. They can watch and predict reactions, but they can never really understand how it feels to be a parent of a child with cancer. That sad honour goes only to those that are members of the select little community that make up the families within the Unit.
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