Saturday, 11 September 2010
Before I start writing about daily events, I should state as accurately as I can where I am at in terms of progress of the tumour and its effects, otherwise updates will be rather meaningless, and you won't be able to see how comparable my situation is to yours. I am assuming I am talking to the person with the brain tumour, but you may be a carer, family member or friend. I'll try to keep it short and direct, but if there is some detail you want, I'll try to give it to you if I can.
So, here goes.
I discovered I had this tumour on 3 December 2009 with a violent seizure of the right arm. I had a craniotomy on 17 December to remove as much of the tumour as possible from the left side of my brain in the motor function area. In January 2010 I began oral chemotherapy and radiotherapy at Peter Mac in Melbourne. This lasted until mid March 2010 when I returned to Armidale. All treatment since has been done in Armidale with MRI scans in Tamworth, about 110 km away.
The immediate ongoing effects of the tumour were further seizures of the right arm, lasting about 3-4 minutes on average. Treatment was with Dilantin and it was very difficult to find the right dosage - effectively a trial and error process. Later other anti-seizure drugs were introduced to give more stability but focal seizures still remain the most obvious and debilitating problem. The arm seizures resulted in loss of power to the arm and fingers, and the right arm at this point is very weak, prone to palsy and sometimes more a hindrance than a help.
Seizures - usually one or two a week - have indicated that containment of the tumour is not working - and an increase in inflammation of the brain is continuing. The seizures have extended into the right shoulder, right side of the neck, travelling down into the stomach then to the ankle and knee, and from there to the right thigh, causing serious mobility problems. Treatment was changed from oral chemotherapy to intravenous, to try a more aggressive way of containing the tumour and controlling brain inflammation. We believe it has had a retarding effect, but not enough to maintain quality of life, which is reducing day by day. Steroids were added 6 weeks ago to improve quality of life and they were very effective initially, but as we knew, they gradually declined over the period and are now much less effective.
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