My brother who is in his mid 30’s is in the last stages of this awful disease. He has battled it for 7 years but in the last few weeks it has taken hold and literally exploded in growth. He has become sleepy, confused, agitated and wobbly on his feet. The decline in his health is unbelievable and taken us all by surprise. It has only taken 2 months for the tumour to suddenly reactivate after all these years of no growth from the first diagnosis to become about 6 times the size it was before. It was always inoperable due to it’s location. 1 week ago he had his third hospital admission and an increase in steroids but 2 days ago we had the most recent consultation and received the bad news. Even in the last 2 days there is a deterioration. It is incredibly distressing as he doesn’t always know who we are are what is going on. He is very confused and I am not entirely sure that totally understands what is going on. The palliative nurses will visit this week to start helping us and him prepare for his death. Words cannot express the pain we are all feeling, the only saving grace is that he seems to be pain free.
