I have been offline alot lately and to get on here tonight and see your story, i feel so unbelievably sad. Sending you lots of love and hugs xxx ... View more

Hi Everyone Apologise for not replying sooner. Welcome to all the newbies, although its not a you really wanted to join, it really does help. Since speaking last i have pretty much just been trying to settle back into living with Dad. He is going pretty well, just completed round 3 of 6 chemo sessions. He has minimal side effects which is great and it doesnt seem to stop him from doing much. After reading all your replies it makes me appreciate how well Dad still is and encourages to make the most of it. He is grumpy and gets overwhelmed by things easily and repeats himself alot, we've noticed he does not make eye contact with us anymore either. These things use to really upset me so I ended up going and seeing a psychologist. It was the best decision I have made. My poor husband is now working from home and is struggling with living in a new town so he is not the greatest support at the moment. However seeing the psychologist helped me see things in a different light. She explained that the lack of eye contact would more than likely be his brain only being able to process a small amount of things at once. The brain is trying to form the words and sentences and if he were to look at you as well it would be overloaded with trying to read your expressions and emotions.I have found that Dad does not know you are cranky or upset unless you literally tell him. Anyways she also gave me a little confidence in reassuring me that I will be strong enough to take on whats ahead and when things get a little out of control I just pop back and see her, this may not be for everyone but just so you know my Dr gave me a referal which meant medicare rebated about 83% of the money. Our next MRI is the beginning of July, i really hate these things, you either walk away happy and relieved or the complete opposite. Groenevelt68 - Dads last MRI had a blemish on it but the oncologist passed it off as markings from the radiation but a different oncologist said it may be the tumor, this worries me. Does anyoe else feel like things were rosy before this happening and now all you think about and do revolves around this gastly tumor? Best wishes to you all Michelle xxxxxxxxxxxxxxx ... View more

By the way I have started reading Days like these, i am up to page 40, ive cried, ive nodded, ive laughed already! It seems to be comforting in some weird way! ... View more

Good evening lovely GBM supporters Well weve made the huge move into Dads house and I couldnt be happier with the decision. Dad has really been opening up about everything and it seems he is understanding what is going on a little more. He has made the huge decision to retire but the scary thing is he doesnt seem to qualify for a disability pension until he uses up all his hard earned long service leave. This is a little tricky as he wants to use it to completely pay of his house, i dont want to sound horrible but my father has been handed a really crap deal and the government wont help him but they are happy to help out people who just couldnt be bothered working!.....sorry but i just had to let that out!!!!!!!! Dad has just completed his first of 6 rounds of temodol, he got a little sick, i think this was more due to the fact that he had an extra day by mistake (lesson learnt, be the one to sort the days for him!) We got through the first MRI with grey still being present in the scan but no new growth so the rollercoaster goes on and we deal with the next scan in 3 months! We leave in one day for a family holiday with Dad to Hamilton Island for some well deserved relaxation, it frightens the hell out of me that this could be his last holiday but I guess i really shouldnt think like that. A few questions for you all, are your husbands, sons, partners etc aggressive? Dad seems to say the most innapropriate things to people and he genuinely seems like he doesnt understand why they are offended. Second question, why chemo? I dont understand how it helps when this type of tumor does not usually spread. Is it just to keep the tumor at bay? Ok im just going to vent here for a minute then ill be ok......ungrateful petty people who complain about such tiny little things annoy me as I always think how hard it must be for dad to sleep, function etc knowing what is growing in his brain and not knowing when it will cause us grief all over again. I feel like the last 4 months are an out of control blur and i wish that i had control of something!!! Sorry for the bit of negativity with this post but if i type it on here than i am fine! THanks for reading xxxx ... View more

Good evening lovely GBM supporters Well weve made the huge move into Dads house and I couldnt be happier with the decision. Dad has really been opening up about everything and it seems he is understanding what is going on a little more. He has made the huge decision to retire but the scary thing is he doesnt seem to qualify for a disability pension until he uses up all his hard earned long service leave. This is a little tricky as he wants to use it to completely pay of his house, i dont want to sound horrible but my father has been handed a really crap deal and the government wont help him but they are happy to help out people who just couldnt be bothered working!.....sorry but i just had to let that out!!!!!!!! Dad has just completed his first of 6 rounds of temodol, he got a little sick, i think this was more due to the fact that he had an extra day by mistake (lesson learnt, be the one to sort the days for him!) We got through the first MRI with grey still being present in the scan but no new growth so the rollercoaster goes on and we deal with the next scan in 3 months! We leave in one day for a family holiday with Dad to Hamilton Island for some well deserved relaxation, it frightens the hell out of me that this could be his last holiday but I guess i really shouldnt think like that. A few questions for you all, are your husbands, sons, partners etc aggressive? Dad seems to say the most innapropriate things to people and he genuinely seems like he doesnt understand why they are offended. Second question, why chemo? I dont understand how it helps when this type of tumor does not usually spread. Is it just to keep the tumor at bay? Ok im just going to vent here for a minute then ill be ok......ungrateful petty people who complain about such tiny little things annoy me as I always think how hard it must be for dad to sleep, function etc knowing what is growing in his brain and not knowing when it will cause us grief all over again. I feel like the last 4 months are an out of control blur and i wish that i had control of something!!! Sorry for the bit of negativity with this post but if i type it on here than i am fine! THanks for reading xxxx ... View more

Peanuts it's so nice to know that other people completely understand. I'm sorry for the late reply, I am back in brissy packing up my house as my husband and I have decided to move our kiddies 11 hours south to live with dad so we can have as much time with him as possible. I also didn't think it was fair to leave all the drs appointments up to my 25 yr old brother. How is your partner doing at the moment? On tuesday dad has his first MRI since radiation, I'm a little nervous as I think it will be a huge shock to my dad if it's not completely clear. Love and strength to you both, and I completely agree on the roller coaster concept, that's exactly how I describe it to everyone! ... View more

Thank you for the reply smiley. I have now spoken to dad's oncologist and I found the cancer council hotline was amazing. We are now just over half way with radiation and everyone is struggling being in Sydney. We all seem rather snappy at each other. My brother and I are finding it hard to be super patient with dad and his memory loss and his inability to comprehend things. As he looks well and appears still quite healthy it has hard to remember that he cannot help it. He is determined to go back to work as soon as possible but their us no way that he could return to his former job. We would love for dad to retire and have some fun but it is really hard to approach tihis without upsetting him. Have you found anything like this? And if so how did you deal with it? Thank you so much Michelle x ... View more