How sad to hear that Lorraine's condition can deteriorate very quickly but it must feel like a life time for you. ... View more

I'm sorry Maddie.... all I can think of and try to accept is that people these days only concern about their own life and lack of compassion. Today I actually had a bit of thinking whether it's the Western style or modern way of living which cause this. The way you give so much freedom to kids to make their own decision, have their own lives, look after 'themselves' and probably forgot about others in the process. In your case, people who haven't RSVPd may be waiting to see how you go and don't want to give you too much pressure. I'm just trying to come up with something positive 🙂 ... View more

Hi Nicole, my partner goes to Monash but he went to RMH for a brief period for a clinical trial. NO at RMH mentions about the clinical trial you mentioned so thought your mum might go there. ... View more

Hi Geoff... sorry to see the position you are in. I'm so impressed that you can still joke in this situation. I guess it's how we can get through this sh!t. I had some experience with the same thing. You wouldn't believe that one night out of no where while I was sleeping my partner got up and say sh!t sh!t sh!t. I thought what was happening and started to smell something.... mmmm some strong smell.... he probably wanted to go to the toilet badly. Ok, I got up and turned the light on so he could make his way to the loo with ease and quickly. No don't turn the light on he yelled. Why not? I thought and turned around to see what was going on.... Oh yes... that's what he tried to give me a signal for. Not a pretty sight, something I had never ever imagined I would see a grown man doing. He had no clue how he did it. Our bedroom is at the front of the house and the bathroom is at the back, no ensuite. Imagine Mr Independent tried to go to the bathroom to clean himself up with bits that he wanted to get rid of all over his lower body while me yelling stop stop stop hoping that I could control the damage. Nop, too late. Unfortunately another incident happened within minutes after he showered himself and I cleaned up the bathroom and toilet. It's like Déjà vu that I couldn't imagine how it could happen just like that. Oh boy... I couldn't go back to sleep after cleaning it all up and swore that I wouldn't give him any healthy food again hoping that next time those bits would be solid and easier to clean up. Luckily, we haven't had another episode like this again yet but every time he passes wind I feel slightly squirmish. On a serious note, should I discuss with palliative care team to start planning for the worst? How should I prepare the house/bathroom/bed etc.? Do I have to hire a respite care worker? Basically, I don't want to do thing to make him feel that I expect him to get worse although I think it's very rare that people with GBM can get away with this situation. I'm so tiny comparing to my partner. There is no way I could carry him to shower. Our shower is over a spa bath so it's quite an effort for him to have a shower these days. I can't imagine how he could shower when he's in a poorer condition. At the moment, he showers 2-3 times a week. It's nice that he doesn't have bad BO hehehe When he showers, no help from me is required. Although I'm asked to stand and have a perve, then hand over towels when he's done cleaning himself. Sunshine.... quality of life is something you have to discuss with your mum. My partner is at the stage that he's so sick of the treatment. Chronic fatigue syndrome that he has together with the chemo pretty much knock him out. He asked me what's the point of all these when all he does are sleeping, waking up, eating, sleeping, getting up, eating, sleeping, getting up, eating, shower, sleeping, sleeping, eating, and sleeping and I go to work. He feels lonely when he's home alone. I feel kind of lonely when I'm home with him as he sleeps most of the time. All I do is cooking, cleaning, holding him in bed, surfing the net/watching movie in bed next to him while he sleeps. As for kids, I don't particularly like kids and don't have one so I can't help you with this matter 🙂 ... View more

Hi Nicole, just curious... does your mum go to RMH? ... View more

Hi Geoff, long time no hearing from you. Just wondering how you and Lorraine are doing. Hope things aren't too bad for both of you. ... View more

Thanks Silly 🙂 ... View more

Thanks Suzie. 🙂 ... View more

I'm sorry for your loss, Suzie. ... View more