I thought getting things out of my system by writing about what I experience on this site would help. Not sure it works. I feel that I'm full with anger and sadness but I don't know who to talk to. I'm a private person and I try not to be a cry baby. My best friend is my partner and now he seems to live in his own world, deal with his own problem and try to fight with his exhaustion which seems to be all the time now. I used to tell him how I feel and he expressed concern now he hardly acknowledges it. I know what I'm dealing with can't be compared with what he's going through but he just doesn't try to make my life easier either. When he's sick, he doesn't want to go to the hospital. When he's struggle physically, he asks no help but for time to gain his strength which in a way I admire his spirit and stubbornness. Going to work is kind of a relief, getting away from the problem at home but worry me to death at the same time. He says he's fine but I just have to clean up after him wherever he goes... toilet, bathroom, kitchen, bedroom...... It's not pleasant and domestic work has never ever been my thing, let alone cleaning up toilet every time I want to use, picking up someone's shit, and smell it all over the house. There is no help I can get even I can afford. No cleaner, no gardener, no plumber, no builder, no palliative care. My partner does not want anyone except me and his family to step into our house. He believes he'll get better and being able to take care of what has to be done himself. He hangs on to stuff that he has accumulated through his life and we live with boxes every where around the house. There are so many incomplete projects lying around every corner and I'm f#@$! sick of it!! He said he's not giving up but he hates Dex and does not make an effort to take it. I've been contacting so many oncologists both in Australia and overseas looking for treatment options but as everyone knows there is no cure and we are nearly at the end of the road. I don't really know how to get this message across to him. ... View more

Bad news. My partner had a scan last Friday and the result is not good. His second tumour in the front left temporal lobe has grown from 2x2cm in early June to 2.?? x 4.6 x 4.1 cm even though the original tumour site looks good... a bit of a mixed bag. The doctor has decided to continue with Avastin and add Carboplatin to it for the next 2 doses before we decide whether Avastin works or not. Here comes the only good news we receive today, Roche has changed their policies after we pay for 2 doses so we do not have to pay anymore. How convenient after I questioned the amount of Avastin that the doctor prescribed being a bit lower than it should be due to lacking of proper weight check and adjusting the amount of drug to suits the weight prior to the infusion. My partner was 100kgs back in March when the doctor weighed him last and so he prescribed 1000mg of Avastin (10mg/kg) but he has since put on weight due to Dex and was around 120kgs when we made a decision to go with Avastin so he should have received 1200mg. I did mention about my partner's weight increase to the doctor but he took no notice. I also questioned the pharmacist at chemo day unit when I learnt that he would get only 1000mg which was odd but nothing was done about that. I'm so frustrated with our medical system. The other day I rang up an oncology nurse to find out who arranges all this appointments for the oncologist and the scan because we initially had an appointment for MRI on Tuesday (tomorrow) while the appointment with our oncologist is for Monday (today) which doesn't make sense. I really hated it when she said "Smart girl, good on you that you figure it out it doesn't make sense. Now ring the MRI department and reschedule it to be earlier.". I'm not asking for a compliment all I need is someone telling me what has to be done and I can arrange it all myself instead of them stuff it up and need me to figure it out that they stuff things up. Another stupid thing is we were given a number of registrar on call to call in case there is some issues. I called the registrar over the weekend due to my partner being sick but the response I received was "You've got the wrong number. (mmm... sorry they put me through to you.) I'm a registrar for stroke. I don't know anything about Avastin. I don't know your partner. If not urgent, wait until Monday; otherwise, go to Emergency." hang up.... I guess it's something I have to get used to and as the doctor said it could be all over in 2-3 months time. All I know is they can't fix the damn thing, how could they know how long someone is going to live for!? ... View more

My partner just had an MRI scan this morning. He's been feeling very tired this week. I hope it's from our 5-days trip to Tassie last weekend which he did quite well for the first 4 days and not from the tumours' growth. He didn't have his usual nap during the day while we were in Hobart and now he's probably paying for it. We have an appointment with his oncologist on Monday morning to see whether Avastin does the job. I don't expect a miracle but a bit of breathing space would be nice. ... View more