I haven't logged on here in months but I happened to log on tonight. I read your post, and I have so many similarities to your story. My husband was diagnosed with a grade 2 astrocytoma which then turned aggressive and 1 year ago he sadly passed away. It was only 18 from his diagnosis to his passing. We also have a 3 year old (who was 2 and 1/2 when his dad passed). I don't really like to give advice as everyone is so different, but I can tell what I did and what worked for us. I was advised for that age group to keep them in the loop, so my son was with us through everything, even staying with us at the hospice. Because the decline for us was quite gradual, (but speed up towards the end) our son got used to the changes in his daddy and never seemed too phased by it. I think he would have been more distraught to be separated from us and to be shipped off to stay with friends or family. It was always hard to balance between trying to have my son and husband spend precious time together, and keeping things quiet and calm for my husband as he suffered headaches, agitation, noise sensitivity etc The line that I found worked best when trying to explain things to my son, was that daddy's body was sick and that soon daddy will die. This means his body will not be here anymore. He wont be able to walk or talk or breath anymore, and we will not be able to see him. I also explained that even though we can't see him, daddy will still love us forever and that we can still love daddy and talk about him and see pictures of him and he will always be your daddy. I do not have a specific religion so I never bought up the heaven thing, and I was also advised against saying daddy will be sleeping forever or he lives in the stars now etc. Apparently that confuses them even more. I also was very open in saying that its makes people sad when someone dies because we all miss him so it is ok to feel sad or cry, but equally it is ok to not feel sad too. Being a toddler with a short attention span you will be amazed at how lightly they take most of this and that slowly as time goes on and they develop, different issues arise as their little brains start to work things out. They are not like adults who seem to grieve very heavily for a period of time. Toddlers seem to do it in shorter bursts here and there. At the moment my son is having a few issues with asking if I am going to leave him, or wanting to play a game where he wants to pretend that we are siblings and our parents have died - weird I know, but apparently this is how they figure it all out and I am just happy he is expressing himself and the topic of death is not taboo. I know exactly what it is like to watch your young husband, fade away into another world and also be a mum to a toddler at the same time. I am not going to lie, it is excruciating. One year on I am miserable and heartbroken but still standing, and my son is healthy and happy. I don't want to put too much info on here about the final stages of brain cancer as some may not want to read about it, but feel free to private message me with any questions. Also look up some of my previous posts as I have written about my situation before and you may find it useful. My heart breaks for you and I have so much I could say to you. But I will leave it there as this is already a novel! Please contact me if you have any questions or would like to chat further. Much love and strength to you and your precious family ... View more

This is a big regret for me, so well done on trying (and succeeding!) to live 'normally', as I know it is not an easy thing to do. I hope you enjoyed your holiday together. My husband lived with the GBM diagnosis for 18 months. From day 1 he was severely impaired (physically & mentally) so I felt a bit robbed of the chance to "make the most of life while we can". You are doing the absolute best thing for you and your family - loving and living, now go and enjoy!! ... View more

I am so sorry for what you are going through Dotty and Rex. I have been in your shoes and it is the hardest thing imaginable to witness and be a part of. Just the fact that you are still standing is a testament to how wonderful you are. As hard as it is to take, your husband probably feels you are the safest person for him to vent his anger on because he knows that you will still love him no matter what. And I am sure you know, that when cancer gets into the brain, the person is no longer the same. Sometimes you just have to tell yourself this is not the actions that your husband, it is the cancer taking over. I was the one without the illness and I even yelled and screamed at my poor husband at times, the stress of the situation is beyond what any loving couple should ever have to go through. Just try to love and be loved, and when you can't, don't beat yourself, or him, up about it. You are both doing the best you can do in an awful situation. Sending much love and peace you way xxoo ... View more

Hi Peanutz, My husband was diagnosed with GBM 2 years ago so I am very familiar with most of the costs involved. You will be happy to hear that there were not many times that we were out of pocket. We did not have any type of private health cover. One of the big positives is that Australia is very lucky to have the chemo (Temadol) subsidised so it is very little cost to you but it is actually worth thousands of dollars for each treatment. We moved to NZ during my husbands illness and it was not subsidised in NZ so it really made me appreciate the australian health system. If you have any other questions about anything to do with GBM then feel free to message me as I have become quite the expert! ... View more

Scared to ask......how are things? xxx ... View more

Oh I am so glad I was some help to you. It is hard sometimes to know if you are saying appropriate things as none of us on a chat site no each other. I was hoping I had not scared you to much with all the the talk on dying. I know I used to find it extremely hard to talk about it even though I knew it was coming. How is he going today? Things can change so much in such a short time. How is the food thing going? My husband survived on only those drinks for the last few months of his life. He hadn't eaten real food for ages. You may want to discuss with the medical team about your options for stopping his oral intake all together. Sometimes you have to bring these matters to their attention yourself. If your gut tells you that this is his time, (and from what you said, your father is ready if it is his time) then maybe it is kinder to stop the drinks. It is inevitable that he won't last too much longer once the oral intake has ceased. It is a huge decision and was one of the hardest days of my life, when I had to decide this for my hubby. But it is that whole 'you have to be cruel to be kind' thing. It seems so wrong to stop trying, especially if he is still fairly conscious. But I really think, in our case anyway, that it was the right thing to do. It kind of speeds up the process of the inevitable. Your dad may even have stopped his intake by physically not being able to do it anyway by now. So glad you have great support from your partner and family etc. That was the worst thing for me, I was dealing with the hardest thing ever in my life and I was doing it without my husband. Yeah I have family support etc but its no where near the same as having my man :-( I am actually a registered nurse and because of my hubby's illness I am now a bit of an 'expert' on this topic so please feel free to fire any questions you may have my way. Anyway, not having the best day myself so will leave it there. Lots of love xxoo ... View more

Hi Peta, I just replied to you in a different thread before I had read any of your dad's back ground info. Now that I have a better understanding of your situation I just wanted to say a few more things.... Firstly, I understand your fear of the situation, it is so scary. BUT now that I am through the other side, I realise I did not need to have so much fear. If you have a good palliative care team then the best thing I recommend is handing all your fears and stress over to them and just be there for your Dad. Its hard to imagine what he must be going through but having you right by his side will most definitely be helping him. I had a lot of conversations with my husband (even though he could't respond) about giving him permission to let go etc. To help somebody through this awful time in their lives is such a privilege and really goes to prove the strong bond and love that you and your father must have for each other. The other thing is to trust your gut instinct. If you feel as though your dad is uncomfortable or stressed in anyway, then ask for help. And by help I mean more medication! I think the reason my hubby was so comfortable was because they kept him medicated appropriately. Now is not the time to hold back on the med's!! You know him better than they all do so you will be the best judge of his comfort. Your Dad sounds like he has been through so much in the last few years so if this is his time to go, then let him go. My hubby was only 34 and I was so mad that he was dying but once he passed I just felt such a sense of calm for him. After seeing him suffer so much it really did seem like the better alternative was death. It is not fair and doesn't not really make sense but I feel as though you get to a stage where you just have to let nature take its course and stop fighting the fight -as it is so exhausting for both of you. After what your dad has been through I do think it may be kinder on him that this stage is moving fast. As hard as that it is to accept for you. Anyway, I am sending you all the love in the world. Please get strength from the fact that other people have been through this and are still standing, and we really feel for what you are dealing with. xx ... View more

Hi Peaacal Glad you found that website handy. My husband actually passed away 3 weeks ago. As the website says, people go through all those stages at their own pace, and I must admit my husband took months to go through what some of those people went through in just days. Mainly because he was so young and fit so his body was hanging on even though his brain was so unwell. I did sort of see a repeat of all of those things happen again though in his last few days so I knew we were getting close (the pointing into thin air, talking to 'no one' etc even though he hadn't spoken for months!). And, as well as that, our 2 year old son told the nurse one morning that daddy was about to die soon - and sure enough he passed away that night! So, if you don't have a 2 year old around to predict the future, then I def recommend keeping up with that website! I would like to add that he died a very peaceful death and was very comfortable. I highly recommend taking all the help that you can from your hospice as I believe their help is why he passed so comfortably. His breathing was very rapid but he was very restful and he just slipped away in the night while we were snuggled up together. Hope your father (and YOU!) are doing as well as can be. Much love and respect to you for helping your father through this, it is not easy xx ... View more

One week ago my sweet husband lost his 18 month battle with brain cancer (GBM). I am now a widow at 29 years old. At first I just felt happy for him that he no longer had to suffer but it is getting so much harder to cope everyday. I don't think I will ever recover from this. Luckily our 2 year old son to keeps me going but I am just so gutted and empty and devastated. What just happened to our beautiful life? I want him back!!!!!!!!!!!!!!!!!!!! ... View more