Hi Sandra - who's this co-ordinator?? a nurse? social worker? Our big old butch nurse who acts like a doctor and appears to be the one who coordinate thing is hopeless. I think she might have mentioned something along the line that she's the coordinator. She's the one who said good on you smart girl to me. I tried calling social worker at the hospital but none was available at the time, left a message but never heard back. I'm getting a palliative care nurse to come in for assessment on Monday. Hope they aren't hopeless and waste my time. Now looking back to the past year, when Dennis was part of the clinical trial, the doctor and nurse apologised if we found them too attentive and looked after him too well. We wondered what they talked about. We know the schedule, when to come to the hospital, what it's for, who we'll meet, what they will do, how long it will take even though sometimes we have to wait a bit for our appointment. Everything was organised. They checked his heart, his weight, etc. They were quite attentive and looked after us very well until they discovered the second tumour that keeps growing and kick us out of the program. It's probably not that bad but still. Take care Sandra. ... View more

Hi Sarah - thanks for this. I don't know about counselling, not sure how it works. I know I need to talk to someone, more like my friends but they aren't always available and I'm not good at initiate the talk so I whinge/rant/or whatever they call it on this site 😛 The bad thing is I don't get the feedback and hug right away which I sometimes need. People told me not to put a smile on my face and act like everything is fine all the time. Well, I don't if they hit the right spot or I'm drunk which I learn and try not to drink too much when people around. I couldn't believe I was crying with my partner's brother's wife whom I met 5 times in the past 11 years. Anyway, I'll get my friend to come over to have a chat a bit more. ... View more

Hi all, Thanks for your feedback. It's a tough call. I enjoy working and it helps keeping me sane. My partner can be very demanding and hard to live with. I know it's the medication and GBM that change him. I love it when we have good days and hate it when he's a different person. Everything he wants he wants it NOW or an hour ago. He whinges a lot and can't remember that he whinges. I can get into trouble for helping him and by not helping him. I got into trouble for cleaning the house and not holding him or stay next to him in bed while he has a nap which is most of the day. His family came over last weekend so I tried to tidy up the house a bit even though the main purpose of their visit is to help me with domestic work which is not my strength. It ended up Dennis changed the plan to get his family to come earlier and got out of bed in the last minutes, complained how untidy the house was (caused by him mostly) and bossed me around to put things away and off to have a shower. When he finished shower, he continued to boss me around to tidy up the house and asked "don't you think you need a shower before everyone's here?". So, I calmly said to him that he's lucky his family would be here in any minute; otherwise, he wouldn't live long enough for the tumours to kill him. It's good that sometimes he recognised and admitted that he's not the same and causes problems. He's now a bit more open for me to get help and probably why he doesn't want me home with him all the time either. We agree that I go to work (oddly) early (for me), leave early and take a day off here and there seeing my boss understands my situation and doesn't mind me working long than standard hour and allows me to take time off for those extra hours I put in. I also try to let go a bit. I figure his brain is still well enough even though his memory and speech are deteriorate. I can't force him to do thing, not even taking medication. He believes he can look after his own medication and refuses to have too many Dex. He refuses to take Somac to protect stomach lining. It's like what my dad siad. You can take your horse to a river to drink water, you can't force it to drink. Well, we have a meeting with a palliative care next Monday. Hope it's not a waste of time. Also, I find this Commonwealth Respite and Carelink Centre Website, not sure what it is about. How does it work? Should I get in touch with them? Take care everyone, and thanks for your support. ... View more

I find it's hard to read this post from Geoff. Seeing I'm feeling OK while at work and finished some work and having a break, I re-read the post and find similarities with my partner's current state as described by Geoff on Lorraine's current state: "She is tired and wobbly at times feeble and shake. She can get out still, but needs someone with her to steady & ensure she is OK. She rarely answers her phone Loss of communication - she tries to talk and most of what she says I dont understand ....this part is hard, she ends giving up trying to say what she wants - & sometimes making a joke that I don’t hear - she will eventually withdraw from me into some inner world of waiting" ... View more

I guess it's not too much of a disappointment that my partner went to the footy instead of spending time with me. I'm happy to see him happy and in a way I got time off from looking after him. Celebration for special occasion is overrated anyway. We try to find thing to celebrate when we feel like it :) I'm mad at the fact that someone who enjoys life and can still look after himself and occassionally go out were told that he hasn't had many months left. I don't know how fast people who has GBM can drift off but 2-3 months seem a bit on a pessimistic side, I think. I'm also mad that his brother didn't look after him well enough not to get him too drunk which resulted in a couple of falls with cuts and bruises afterwards. They are all grown up boys but I guess boys will be boys. ... View more

Thanks Terese. I have decided to get in touch with palliative care tomorrow and will get his brother to be here at the same time. Just in case he gets so crossed. I can deal with him getting angry with me but it would be so bad if he did it with other people who try to help him. ... View more

So sorry to hear you are in this situation. Please take care of yourself and do get support from Cancer Council's nurses or talk to your friends if it helps. I understand some people seek help from palliative care early on and see the benefits. I'm yet to try this myself even though I've been in this journey for a year now. Take care ... View more

Congratulations Rikki ... View more