Hi Smiley, you sound very brave and strong both of which can be hard to be. My thoughts and possitive vibes are with you and your husband as you undertake this journey. You will be the guide for your boys, I know with my son he often took his lead from me in how he behaved and the conversations that we had. All I can say is be true to yourself and be kind to yourself. It is often the ones watching on that find it the hardest and can be too critical of themselves. Take Care ... View more

Oh Mands I am so sorry to read your post. Having just gone through this I feel your saddness. At the same time I wish to congratulate you as you not only gave him love but the support of you all being around him, that is so powerful. You have kept a possitive attitude and good outlook on life which can be difficult during this journey. Make sure you look after yourself and take time out when you need it. To everyone going through this, my dad would often give me a hug and say can you feel the strength.... well I send you a hug and hope a little bit of mine will help ... xxxx ... View more

Hi, I just wanted to thank you all for the lovely comments and condolences it really did mean alot it just took some time before I was able to read them. My dad's funeral was a true celebration of his life and I believe he would have been happy with it. Although it seems a strange thing to say we had many who told us it was a wonderful funeral and that gave us all such warmth. As much as it is so hard at the moment & I know it will continue to be I also know we were so lucky to have him for the time that we did and that this terrible thing never took his humour. To all those still going through this just remember this horrid disease cannot take your memories or your love away. Try where possible to look at possitives what ever they may be and dont let it eat you because that would be even sader. Love and good wishes to everyone. ... View more

Hi Everyone, It has been good & bad reading all these posts especially now. Dad was transferred to Pallitive care a couple of weeks ago and although required FULL nursing was content if that make sense. You would go to visit him and ask how are you and he would always say great! Last Tuesday we got a phone call to say he had started seizing and the only way they could stop was to sedate him and told us all to come and say goodbye. Dad kept fighting until Monday morning. It was so hard to watch him fight so hard but we stayed with him making sure there was one of us with with him all the time. We didnt want him to be alone. The funeral is this friday, his fight was only 7 and half months but he was so brave and we are so sad that he is gone but so blessed to have what we did. Tanya ... View more

Hi Melissa, it is easy to hate all of this! My dad was only diagnosed in June last year so my journey has been a bit shorter that yours. I also dont have the distance you do which I am sure must be difficult. I am about an hour from my dad and I find that too far sometimes. My dad has just been transferred from hospital after surgery for an infection to pallitive care as we have made the decision not to have anymore surgery etc as he is just not up to it. (this was a very hard decision) However he is relaxed, the centre is lovely as are the staff and he will acknowledge us and talk if asked a question and in a weird way almost at peace (i hope that makes sence)He is however bed bound. I think we are more stressed and upset than he will ever be. The one possitive thing for us is that he is totally unaware of what is going on and how much he has deteriorated. But as you say it is soooooooo very hard to watch someone you love no longer be who they are......I also understand about not wanting to burden others my family are all finding it very difficult and I tend to be the one they talk to so I tend to keep how I feel to myself. I hope this site will be helpful to you. Tanya ... View more

Hi Mands, Yes it is hard to watch someone you love become someone else. I suppose the one consolation as such is they dont seem to be aware of whats really going on. Dad is still happy to see us, can hold a conversation about any topic really just dosent know the details like who people are or their names. The infection is improving and he is more mobile I just dont know if the confussion will improve or if this is as good as he will get. He is dependant on nursing care at the moment. It must be nice and hard having your dad live with you. ... View more

Dad id ok, he got through surgery and has had some heavy duty antibiotics. Unfortunaltey he is still confussed and although he knows we are familar he dosent know who we are. How are things with you? How is your dad doing? Tanya ... View more

Hi Mands & thanker, We have just had a interesting week. Dad was put into hospital last Wednesday with what the ambos thought was bad gastro. He had woken to vomiting & diahorrah in bed with a fever. They took him to hospital and was treated for same then rang me for some info which I gave and then drove over (i live 50mins away) to see him and find out what was going on. When I saw him his head was very swollen (like a balloon that was about to burst) and then I noticed a small hole on the top of his head where fluid was coming out. I mentioned this the to staff who hadnt noticed! They then started doing more tests and decided to airlift him to Melbourne to put in a drain. On reaching Melbourne they then said no we want to do surgery we think he has meningitis! Which they did to remove a piece of his skull that had been infected. He is still in Melbourne but is slowly improving unfortunaltey he will be there for Chrismtas which has caused a bit of a rift in the family as not everyone is on the same page anymore. On a possitive note they did a scan while he is there and the tumor is not currently growing. Sorry that was a bit long winded. Tanya ... View more

Hi Mands, Yes it does sound like our dads are at similar stages. Mine has always been a very possitive man and remains that way at this stage. We have a appointment with his oncologist next week to get the results of the last MRI and will know more then. I also wish you all the best with what lies ahead and that you where you can enjoy your dad. Tanya ... View more

Hi, my dad was diagnosed with GMB grade 4 in July. He had surgery, then 6 weeks of chemo and radio, 2 weeks later he started showing symptoms of the tumour being back and was put into hospital, they did a second debulk and he is now out of hospital and having 5 days of chemo out of the month and has just started his second course. It is a horrible disease, my dad has also cannot drive or do much physically and like your dad finds it very frustrating. It is so hard to watch someone who has always been so independant, strong and a conversationalist no longer being able to be that person. ... View more