Dear Jan, So sorry to hear about your husbands passing, he is at peace now but such a shame our heartache goes on and on. Prayers and thoughts going your way xxx ... View more

So sad for your loss..I am really not sure what else to say, as I am still on the roller-coaster ride of this GBM nightmare love and hugs to you xxx ... View more

We all seem to be in similar stages at the moment. My Hubby brain is really becoming more scrambled and you can hardly understand anything he is saying, or what he does makes no sense. Usually he doesn't leave the house, he just lye's down most of the day. Last thursday when I took the kids to school I left him on the couch with an ice pack for a terrible headache. When I got home he was gone...after searching etc a couple of hours past and I was beside myself..called the police who came out and were fantastic not long after he came through the door frantic..turns out he had started a fire by accident (not sure as he couldn't speak to us except for yes and no answers. He had no shoes on and had obviously tried to stamp out the fire with his feet. As a result he has huge blisters, all the skin burnt off one leg up to his knee. Ambulance came and took him to hospital to get his burns fixed. They are keeping him til monday when they will do an MRI. He has a nurse in the room all the time so he won't escape. When I visit he has no memory of what happened, is extremely paranoid about the room being bugged??? Won't let me feed him yet most of the food is landing on the bed and not his mouth. This is not my husband....I am getting a break I guess and still have the 3 kids at home for company but am so lonely and sad...just keep crying and feel like vomiting, as I can just see him there lying in bed just staring at the walls, but I know it is too unsafe for him to be home. Then when I do visit he gets angry at me because I leave him there. I don't want to go on like this anymore, the pain is just too unbearable but I have too be strong for the kids. This has gone on for too long, I am tired and just don't have the strength..need to go grocery shop but just want to stay in bed, as my emotions come out randomly and I am so sick of crying in public...anyway enough ranting. Hugs to you all, I too also want God to take him so his pain is gone but I don't want him to leave either 😞 😞 😞 ... View more

Maddie, my heart goes out to you my lovely. So glad to hear you got married but so sad about the here after. I don't know if it will ever make sense, its something that I struggle with daily. My hubby is not ....dare I say at a coma state atm. Some days I get this boost of joy that he is recovering but by the afternoon of that day he cannot string 3 words together. I totally lost it last night which ended up in my 16 yr old son ringing my mum . It caught me by total surprise when she turned up..but I realise they are also at the end of the rope. But so am I ...I need a break but there is no choice but to carry on. Take care my friend and I am not sure if you are religious or not but I am so will keep you in my prayers..I so feel for your broken heart. I believe my hubbies heart etc are keeping him going as he is not the man I married and as days go by and he forgets the children s names, well it devastates them as well as myself. I can't tell you how it can ever make sense as it is my battle right now,all I can say is I am so sorry for what you are going through and you are in my thoughts daily. Hugs and sorry I can't find the words...take care Wynette xxxx ... View more

Hi Jan, Oh I so hate this GBM crap..my hubby was really quite good when we took a trip to Somerset Dam (QLD) on sat...yet when we get home I cannot get a conversation out of him..one word answers then other conversations are so confusing I have no idea and he just say don't worry and closes up. I am so up and down..most days he lies down alot and won't talk then for a while he is perky like nothing is wrong..I just don't get it, it is so distressing for the kids and I plus must be for him but don't seem to find an answer why in amongst these bad days he perks up ??? I pray for you all on this site and what you are going through it is so courageous of you. I want to come on and find out what is ahead of me but then it freaks me out of what is to come in the future. All I can say is hugs to you, you are so brave and like me and many others why us? why so much pain?? GBM sux. Take care Wynette ... View more

Hi Terese, Just wondering how you are travelling as if I don't know the answer. Thinking about you and sending hugs. xxxx ... View more

Hi Geoff, Thanks so much for you valuable info. I do have enduring power of attorney, we got that organised when he was first diagnosed as they gave us the 3months scenario..here we are just over 3 years later, so how wrong can they be. We are very fortunate for so long but what stressful years they have been, living from MRI to MRI etc but you know all that. Some of the other info I have not given a thought. The pallitive care team ...well I have the phone numbers etc but cannot bring myself to go there yet, however, I know I may well regret that when something happens for which I really need them. I just think I know that means the "real" beginning of the end and for some reason I panic and cannot go to that place. I guess that sounds really stupid and naive. I keep making excuses to myself like I'll wait until the results of the next MRI as that is only a few weeks away. Call me crazy I just don't want to go through this crap. Not sure if I have told you how sorry I am for your loss. So lovely of you all that have lost to come back on this site to help others, it must make you keep reliving it?? Also I guess the cyber friendships that are made mean alot. I will take on board all you have said and start putting more things in place...eg we have discussed the funeral...he is not that type of bloke, has always said for years if he every died put him in a cardboard box in the back yard. Not sure how to bring it up with him because he his not one like I said for any sort of fuss to be made. I know it can be simple but guess another place I don't want to go at the moment as it is really only the last 2-3 weeks I have seen him cry most days and talk about not getting better, so I don't really want to start talking about funerals. I am pretty confident I know mostly what he would like. Only regret I have is we haven't had a family photo taken for years, and I do wish I had of done that when he much more well, but never too late. Take care, you are an awesome human being and I know would have been an awesome husband to your wife. Wynette xx ... View more

Hi, I am beginning (I think) to go down the path you are at but you just never know with the rotton thing. After his second craniotomy in June he had a second lot of radiation for six weeks (because it was so far away from the first radiation site) which wasn't too bad just extremely tiring. Then after a month break we started 6 more months of Temodal..first 5 days of each month. We are just on the second month and deterioration has been rapid. He had lost about 7kgs, is very depressed, crying alot and also having major anxiety attacks. He is really only tolerating sustagen atm and meds which give him a good nights sleep although he we tell me he didn't sleep at all. I am also very scared and exhausted. A friend has contacted pallative care for me, and I know I have to go through with it but it is breaking my heart in a million pieces. The doctors are bringing his Dec MRI to 3 weeks time and then will make the decision whether to withdraw treatment. At this stage he has weakness but can get around and thankgoodness he has not had a seizure, that would be so frightening for you. I too get irritated and grumpy at him sometimes then feel really bad but I think that is ok we have emotions too and like yourself I am doing it alone. I do have 3 children but they are at school so running around for them also is exhausting me..I catch a nanna nap when I can but you sound like you are doing such a good job and should be so proud of the care you are giving your husband. I do not think you are being unfair at all. It is good to read your post for preparation but also makes me scared as hell that this is most likely to get a whole lot worse and the time frame and unknowns are really scary. Take care of yourself and hugs to you, you are not the only one fighting this way and I so wish it was none of us because like you its been so much stress for so long. ... View more

I know it is very difficult....I try really hard to keep it together around the kids so then it is usually when I am out that I loose the plot..really embarrassing, especially if its around men, I find they don't know how to react real well and must think I am a real loony. And can relate to Maddie, sometimes the anxiety is so bad I feel I am going to die...then it settles but I love going to bed for that blissful sleep of nothingness, shame its all there when I wake up. Take care xx ... View more

Sooo jealous, but so happy for you also. Can't get my hubby to go on a holiday which we desperately need, mind you now we are back on the chemo roundabout not a good idea. You will have a great time and be able to create so many good memories. Haven't got some extra space in your suitcase for an 3 kids and their mum lol. Can't wait to hear all about it on your return. Safe travelling. ... View more