Thanks Jobeth and Mango, As well as the highest burn out rate for carers, you've probably heard it also has the highest impact on family income! I'm thinking of you both. ... View more

Hello Trish, Thank you for your response. I also work for a large organisation and I have very supportive managers which really does help. This disease complicates life so much, I can't imagine working, so I was curious to see what others did. I'm sorry to hear your journey has proceeded at a faster rate than ours. My thoughts are with you and you husband. ... View more

Thank you everyone for your responses. ... View more

Hello Smiley, I'm sorry you're now at this point. We've been told that we gave to pay for the first few doses. I can't remember the number but we were told it's about $30 000. We've set it aside ready to go.... I assumed that we couldn't claim through our health insurance since it hasn't been approved for brain cancer in Australia. (From a cost rather than a clinical perspective.) That would be fantastic if it were covered but surely our treating teams would have told us? ... View more

Hi Supportivedaughter, I wish you and your mum all the very best. Last July, my husband ended up in hospital when he thought he was having a stroke. He worked in Brisbane and returned home to our regional town on the weekend. To cut a long story short, I left work, jumped on a plane to see him, and we didn't return home for 3 months. He has incurable brain cancer. Whilst I was worried about my husband, I was also desperately worried about my daughters who I just had to leave at home. They were in years 11 and 12 at the time. The year 11 child chose to go boarding, while my year 12 child chose to stay at home to look after our pets. Our extended family are all interstate, and both my parents have died. I felt awful and guilty but my husband was so sick there was no alternative. I aked her to concentrate on feeding herself and the animals, and not to worry too much about housework at the expense of study. I'm so proud of her. We still need to travel to Brisbane regularly and my elder daughter has taken a gap year from uni so we still have our pet sitter! The younger one is now in year 12 and continue to board full time. She loves it and it gives her some stability as we come and go. You've done really well identifying how you feel and reaching out. I hope you and you mum find all the support you need. Does the hospital offer support groups? My thoughts are with you and your mum. ... View more

The gout was in his left foot. When he woke, his foot was swollen to double the size of the other. It was hot and red. It was also so painful that he couldn't put any weight on it at all. It's a little better now. The treatment is steroids anyway and he's currently taking 2mg daily with no view to reduce further. (Each time we've tried, he's run into trouble.) We see the team in 2 weeks and it'll be good to know what they have to say... Paracetamol helped my husband's pain. Along with the knowledge it was the result of a bone problem as opposed to a brain one!! Well done for working still! On the one hand, I do a lot of sitting round and I feel like I'm wasting time. On the other hand, I hear the clock ticking... Our team never spoke about life span but I can't help thinking about it...When my husband was significantly physically affected, I had to break my life into 60 second periods. I'd say to myself "Well, that was a GOOD minute". That was my strategy for surviving those scary times. The worse thing for me is knowing that another crisis is looming. We just don't when....... I hope your husband is able to feel more comfortable. ... View more

Hi Mango, We live in the tropics too. We travel to Brisbane for treatment which adds to the challenge of trying to lead a normal life. We now spend half our time in Brisbane - our son's there - and half our time here by the beach. We had to desert our year 12 child last year! She managed to do well and is on a gap year. We have another year 12 child this year. I only hope my husband survives till the end of the year. As far as hope goes, I'm a hopeful realist. I have friends who have lost parents to GBM, and a colleague died also. I discovered this site when my husband was first diagnosed. There was another very active froup of GBM carers. As I followed their plight, I understood the reality of this diagnosis... I tried to return to work after radiotherapy, but we always had to make emergency dashes back to Brisbane. Recurrence, second craniotomy, cystic build up post op, uncontrollable seizures.... Suffice to say, I've taken leave from work. We had to cancel our planned month in Europe (we booked it 2 weeks prior to his diagnosis) once the seizures started. It was stressful enough trying to get him down to Brisbane. It would have been waaaay to scary to go overseas. On Good Friday we ended up in hospital - my husband coukdn't walk. He has gout! Wonderful side effect from steroid induced fat tummy I guess. I wish you all the best on this rocky journey. ... View more

Hi Jobeth, We're doing okay thanks. I'm thinking of you and your husband at this trying time. Take Care ... View more