I remember when I was first told that Abi’s tumour was benign. I was relieved. I thought that everything from thereon in would be okay. I remember feeling fraudulent because I figured Abi was out of the woods and I had seen children with far more severe illnesses. I started worrying about her shunt. I remember meeting Abi’s surgeon after one of her scans. I spent a good deal of time questioning him about Abi’s shunt. After a while, he stopped me, abruptly: “Mr Langston, why are you worrying about that? It’s the tumour you should be worrying about!” I wanted to scream at him: “But the tumour’s benign!”

A few years later and much has happened to make me realise that the surgeon was right. The shunt has worked perfectly, but Abi has since had more surgery and she’s suddenly confronted with a set of nasty options. Because now the surgical options have been exhausted, treatment for low-grade glioma’s, like Abi’s, moves to management, rather than cure. Mainstream medicine then turns to aggressive chemotherapy drugs or radiotherapy. Chemotherapy carries the risk of toxicity. Radiotherapy can cause damage to healthy brain cells around the tumour site, so it raises the grim possibility of impairing Abi’s cognitive functions.

So I dislike classifying my daughter’s brain tumour as ‘benign’. It hadn’t behaved particularly benignly. Brain tumours are inherently difficult, so I feel the classification is not preparatory for the bumpy road that may well lie ahead. To my mind, it would be better, when referring to different types of tumours, to use the terms ‘cancerous’ and ‘malignant’. I have become comfortable using the word cancer to refer to my daughter’s illness. It has helped me come to terms with the fight Abi has ahead of her. Brain tumours are cancerous if they grow and regrow, like Abi’s. Perhaps the term “malignant by location” would be more appropriate.

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