Just wondering how everyone is doing so far. Hope everything goes well. 🙂 ... View more

Here we are... not a good place to be but hope we will get through this 🙂 ... View more

Great job Ben. I didn't see you on TV but being a healthy cancer-free person I'm ashamed. I planned to do the City2Sea but didn't sign up as I thought I was not fit enough and wouldn't be able to finish. I might try it next year but a pair of black spandex is probably better. ... View more

Just when I thought we were doing alright... my partner finished chemo-radiotherapy on 10/10. At the moment, we are just waiting for him to start chemotherapy. We have an appointment with his oncologist tomorrow afternoon. The last few weeks he did OK but was tired most of the time. He felt dizzy sometimes. Occasionally, he felt good enough to go super slow jogging, 3-4 times from my memory. Last week we went on holidays in Thailand for a week and back on Sunday. He did quite well during the trip without any problem and felt better towards the end of the trip. However, since this early morning he has had quite a bad headache, vomited a few times today whenever he tried to eat/drink something, and been in bed the whole day. Still he doesn't want to go to a hospital, he really hates it there. 😞 I'll let him sleep in our bed tonight and tomorrow morning if his condition is not better, off he goes to the hospital. He's a lot bigger than me and I'm not much help when his legs go week and about to fell over. Is this the start of the 'down' trip? I feel helpless. I don't really know what to do. I have work to do, people to manage. I've been in my job for only 8 months and I already spent 8 days on carer leave this year during the surgery and recovery to support him. ... View more

Hi Geoff, Just want to say thanks for all the info. you provided. I really appreciate it. We have an appointment with a medical oncologist this Wednesday. I will ask him all about different drugs and clinical trials. Hope he is quite open mind about this. Thanks again. Nat ... View more

Hi Geoff, Thanks for the head up about EnGeneIC. The two scientists behind seem to be doing such a remarkable work but there is still a long way to go. I searched for the Phase 1 trial yesterday and I found a couple of links but not sure it is related to GBM. A Phase 1 Study of Epidermal Growth Factor Receptor (EGFR) Targeted, Paclitaxel Loaded EnGeneIC Delivery Vehicles (Erbitux®EDVsPac) in Patients with Advanced Solid Tumours http://www.australiancancertrials.gov.au/search-clinical-trials/search-results/clinical-trials-details.aspx?TrialID=83597&ds=1 So where are you and your partner going? Is it for holidays? From my understanding, it seems that all the patients are told there are six rounds of chemo but it ends up being extended anyway. I hope that's a good thing. Just wondering what the effect of chemo on your partner is like, full strength on it own, in comparison to the chemo-radiotherapy. My partner was told that he would have to take 2.2 times of what he's currently taking which is 160mg so that's around 350mg. My partner feels pretty tired the last couple of weeks. He tried to fight the tiredness feeling and not having a nap during the day but I told him to give in and get all the rest he needs. We hope he will feel much better once he has 4 weeks off from chemo & radiotherapy and hopefully chemo on it own is not too much for him. Cheers, Nat ... View more

Hi Geoff, Peanutz sort of comes from my Thai name which pronounce as 'Nut'. I prefer to write my name as 'Nat' though. Thanks for the info. It gives me some idea of what to expect. I am glad to hear that your wife is doing well or well enough to go overseas. How nice! I would like to take my partner to Europe for a few weeks next year. We actually started planning and got tickets a couple of weeks before we found this monster. We are not sure he would be well enough to go and no clue how to get travel insurance now. Have you got a travel insurance for your overseas trip? We are now in his 6th week of radiotherapy. His memory starts to go a bit, same as his health which seems to be up and down. His blood test is all good. His stomach feels a bit upset. He could still jog 4km last week and hopefully he could jog again this evening with me. I hope exercise is good for him. Next week, he has an appointment with a medical/neuro oncologist who will tell us when he will get a scan. Would it be MRI? I need a break, we need holidays but we cannot plan anything as yet. It is quite frustrating. Hope your wife's scan next week looks good! Nat ... View more

Hi Geoff, Thanks for the info. I feel a bit frustrated at the moment. Not sure what will happen next now that my partner is in his 5th week of radio-therapy. It is like there is some sort of treatment plan organised for him but we do not know the person who organised it. On the day he left the hospital after the surgery, we met a doctor (not the neurosurgeon), an oncology nurse, and a social worker who delivered the bad news to us. After that, we received a letter for 1st appointment at their Neuro clinic which we found out later that it's with his radio oncologist to talk about chemo-radiotherapy. When he's into his 2nd week of radio therapy, we received another letter for his 2nd appointment at the Neuro clinic again and we found out on the day that it's for his post operation check up - 4th week or chemo-radiotherapy. At this 2nd appointment, we were told that there will be another appointment (3rd one) with his neuro oncologist a week after the radio therapy. The appointment letter has not arrived yet. I guess this person would talk about chemotherapy. Why can't we just get a plan laid out or be able to talk to someone and get an idea of what will happen next rather than waiting step by step? We don't even know when his next scan will be and how often he will get to do it. :( ... View more

Perhaps, talk about how you feel may help. We are here to listen to you. 🙂 ... View more

"Unfortunately for those in the elderly bracket or those who have ‘Incurable dis-ease’ we are in the category of "sorry", we are not going to spend a lot of resources on you but, you have to listen to us as we are doing all that we can." This is so true. My partner just got frustrated with his radio oncologist this afternoon (again - for the third time out of four times we met him). The first meeting was good and informative. After that, the oncologist seems to lose interest in him and his questions. I guess the oncologist's attitude is you have GBM and chances are you could die in 2 yrs. So good diet, exercise, supplements do not help. ... View more