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Careless Words - Mary’s Astro Story
I was diagnosed with an astrocytoma tumour in 1996 or 97 and underwent a ventriculostomy the same year. This was followed by a further operation in March 1999 to de-bulk the tumour because it had re-grown. Because of its position (3rd ventricle, close to the brain stem) it wasn’t possible to remove it completely.
Some weeks later I was recommended for radiotherapy at a different hospital, had a protective mask made, and began a six week course of fractionated steriotactic radiotherapy (rt). At the initial consultation, after waiting for some time whilst papers were being shuffled and rustled in an adjoining room, Dr A, who was the neuro-oncologist, finally entered to confirm that I was being recommended for radiotherapy. She then said that had I been in my eighties rather than my forties (I was forty-three at the time), she would not have advised rt for me. She then added that, as things were, the treatment would give me about five more years of life, and I should not expect to reach my fiftieth birthday.
As you can imagine, I was devastated. I remember almost nothing of that consultation except that she seemed surprised at my reaction. But no-one had told us anything like that before, even though I already had had two rounds of surgery.Nothing so downright negative, and certainly not in such an offhand manner. I cannot explain how I (and my husband too) felt at that moment: the only word that comes to mind is stunned.
Near the end of the rt course I was booked for a review with the same consultant. I could not bring myself to see her, and told nursing staff I did not want to see her under any circumstances. In any case, after five weeks of rt and travel to and from the hospital, I was in no state to cope with seeing her again. Despite making myself very clear, I was terrified when she walked into the consulting room where I had been told to wait, I believed, for a different doctor.
She had come to apologise, but it was too late. Her comments, made before my treatment had even begun, had ruined my life. I know this sounds melodramatic, but that’s how her thoughtless and callous words affected me. In the weeks after my second round of surgery I was in turmoil.I was still reeling when I encountered this doctor to whom, naturally, I looked for help and support, but her heartless and cruel words led me into two years of hell.
After that, I was unable to talk about my condition or discuss it with anyone; I could not say the word “cancer”; I could not bear to hear anyone else say it. I could barely talk to my GP. However, without his support, and the support I received from a local Macmillan nurse, I dread to think how things might have turned out. I still phone my Macmillan nurse, and my GP is infinitely patient and can put my mind at rest. They are positive and have helped me re-build my confidence in myself and in my family again.
For a long time after, I was afraid for their well-being, so much so that if my husband was up a ladder fixing a window, I would insist on holding it for an hour in the freezing cold because I was utterly convinced he would fall and kill himself if I didn’t. You might think that’s not so very odd, but he is a joiner who has spent an entire working life up and down ladders! I could cite many other examples of how fear tortured my mind. When I thought I was behaving quite reasonably, other people thought I had gone mad!
Since then, my mind and my thoughts have calmed down, but minor things still make me anxious, and constant worrying wears me out. I am glad, very glad, to have proved her wrong and outlived her prediction, but I can neither forget nor forgive those few careless words that changed my life, and not for the better.
Brain Tumour UK Website: braintumouruk.org.uk