Chapter 4 - Treatment

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I was in the hospital looking after Max after a strong dose of chemotherapy. He was very sick, puking about four or five times a day and also urinating many times during the night. Each time I cleaned him up and called a nurse and together we changed the bed. It pulls you down very quickly having such disjointed sleep and tending to your child each time he cries out for help.

At that time Max was suffering a lot of pain but refused to take oral morphine because of the taste. He was also at a stage where he preferred the pain to the intrusion and invasiveness of the treatment. Throughout Max’s second cancer I found it very difficult to cope with his physical pain. All the emotions are yours and are under your control. They are difficult to control, but they are yours and yours alone. His pain is also yours, but there is no blocking of your child’s pain. It leaves you feeling very helpless and insignificant and it was heart breaking to see him crying because of the pain.

Alice, the nurse in charge of Max, came to tend him when the pain started. She had that ‘look’. It is the look where the professional mask drops momentarily, the look that shows that they too are affected, and have a horror and deep sadness at what they see. I am sure the nurses do not realise when this happens. In a perverse way I was glad. It makes then human. They are the kindest, most caring people I have ever met, but they appear to have this almost superhuman ability to keep caring, regardless, which sometimes gets to you. Seeing the mask drop showed what was really happening inside. I felt guilty at witnessing her emotions, but it was comforting none the less.

These little scenarios which demonstrated the true feelings of the doctors and nurses were very important to me. It made me realise that we were not alone and that they too are very human. I often wonder about the consultants, the nurses and ourselves, who cares for the carers?

Max's survival percentage of 5% was so insignificant that it became pushed to the back of our minds. There is no real way to come to terms with such thin chances on a day to day basis. We lived from day to day and the numbers drifted into the background.

Max had been responding to treatment and suddenly Hope started to raise its head. We had passed from total despair to ‘light at the end of the tunnel’. Let me put this into its true context. We passed from certain death into the possibility that Max might not relapse with another leukaemia and that he could survive the tumour treatment.

“The tumour seems to be receding, and Max seems to be responding to the treatment.”

“That's the first good news we've heard for a long time.”

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