Hi all, I have been away from cancer connections for a while now. My hero, my father, took his last breath at 6.46pm on June 21st. He fought his GBM for 3 years and 2 months. I have a profound and deep whole in my heart and a burning anger in my mind over everything that has happened. His treatments, his decline, his care, my loss..... they all turn constantly in my mind. i wish you all the love, care and kindness I can send to you. Missy ... View more

Hi All, My Dad passed into eternal life on June 21st at 6.46pm with my mother, my brother and myself by his side. As emotional as it was, Dad did pass peacefully and as strange as this may sound, I was honoured to be there with him every step of the way. He held me and watched me take my first breath in life.....and I held him when he took his last. We have had a very emotional week, with my mum and brother not strong enough to make all the necessary arrangements, but I was happy to do it all. There isn't anything else that I will ever be able to do for my Dad, so i felt like I could handle making all the arrangements. I would like to thank each and every one of you for your updates and comments along the way..... you helped me a great deal and I say a deep and heart felt thanks. As empty as I feel, as much as I know that there will never be another person in my life that will replace the relationship I had with my Dad ..... I am so glad that I was blessed to have him, for whatever little time it was, because without him I would not be the person I am today. Hugs to you all, Melissa ... View more

Hi Exhausted, I'm not sure what to say. Dad was very confident that he would get better and NEVER wanted to talk about the future. But i guess that was a family thing too..... my mum and my brother didnt want to talk about the future either. Dad and I talked about stuff sometimes - I was well aware of what was coming and wanted to discuss some things with him, but the talks were short - he really didnt want to talk about it at all. Now, he's still in Pallitive Care, its been over 4 months and he's decline is painfully slow. He's not able to talk, and NOW, it seems to all of us, he wants to tell us things - he holds us and crys alot. We know what he's trying to say..... Advice? IS the hospital your recieving treatment from offering any support groups? My dad is in NSW and was being treated at the RNSH and they have a GBM support group. My mum told me the other day she only wishes now that they had gone, and maybe by being around other GBM patients they may have discussed things about the future. I have to agree.... I pushed for them to go, but Dad didnt want to. Its SOOOOO hard - you need some support too, and you will be able to get some, but you need it NOW, not like my mum when dads in pallitive care. Maybe if he's around others who are dealing with the same issues, he can listen, support them, encourage them and at the same time his awareness of whats around the corner will gradually develop? Its just SOOOO hard. This has been my experience with dad, and everybodys journey is different. I dont know if any of what i have said helps, but i hope somehow it has. Take care, Melissa ... View more

Hi all, I havent been online for a while, things have been tough. Dad has been in pallitive care now for 56 days, and has been making a very gradual decline. He cannot talk or move, needs complete care and is looking really unwell. What hurts the most is that dad never wanted this to happen to him, he never wanted to end up like this. And to make matters worse it seems to be happening so slowly. He has always been a happy, lively, independant person and to see him like this is killing all of us. Smiley, make sure you laugh, cry, do and say all the things you need to. Enjoy and grab a hold of everything that happens today. Because one day, you dont want to be like me, sitting there wishing that he could say "i love you too". Hope you are all taking care of yourselves, and by the way, thanks so much for all your support - it really has made a huge difference. Melissa ... View more

Hi Mands, I am so sorry for your loss - but what an amazing relationship you had with your dad - one that will live forever. Stay well, my thoughts are with you. Dad is very stable at the moment, so the Doctors estimate of 2 - 6 weeks has not been correct. Pallitive care will put a care package together for us after easter so that Dad can come home. They think his slide could take months. In many ways its nice to have all this time, but at the same time I dont think he wants to be in this position either. I just want whats best for dad.... Sending you all my best wishes, Melissa ... View more

Hi Hopeful, I just wanted to say that you are an amazing person. You are doing an absolutly wonderful job, caring for your husband the way that you are. I have watched my mother care for my father the same way, and seen and shared their pain, their ups, their downs, the struggles and the exaustion. PLEASE take care of yourself - you NEED to be well to take care of your husband. My dad is still being cared for in Pallitive care. He is deteriorating very very slowly, which is just so difficult to watch. He has always been a very strong, happy man - and now I see him cry everyday - and there is nothing I can do to make this all go away. Hugs to you all, Melissa ... View more

Hi Mandy, I'm so sad to hear. Stay strong in the knowledge that your dad has fought a massive battle, loves you and your family and will continue to always enbrace you with his love. My Dad has been in Pallitive Care 2.5 weeks now, and is ever so slowly making his decline into sleep. Hugs, Melissa ... View more

Hi All, Today the doctors have told us that Dad only has a few weeks. The cancer is highly active and the Avastin is having no effect. He has had a massive downwards turn in two weeks - from slurred speech and walking to no speech and in a wheelchair. His tumour is spreading at a fast rate, and so his oncologist has stated that anymore tests are unnessesary. We now have to face the reality that we are in the final stage. So, now we are preparing him for the transfer to pallitive care, so he can be well cared for and supported. I feel numb and scared. I hope you are all well, Melissa ... View more

To Tanya, I am so sorry for your loss. You did an amazing thing for your dad, and he will always live forever in your heart and through your memories. To all, Thank you so much. All your comments have helped me a great deal. I have realised that time is something that we dont have alot of, but i intend to make the most of it all. Melissa ... View more

Hi All, Hi Rach, Thank you so much for your post. It wasn't offensive at all - I'm glad that I'm finally able to connect with people that have empathy, understanding, strength and tell the truth about whats happening and going to happen. The doctors just continually say "we'll re assess in a few weeks" or "he's going really well". As far as I'm concerned, they are telling fibs, and just trying to 'keep our hopes up' instead of helping us prepare for the reality of the situation. Dad has had his second round of Avastin this week. Immediately after the first treatment his speech improved and he had much more movement and feeling on his right side. This time round the effects have not been so good, the improvements not so dramatic. I just dont think its working. Dads tumor is in-operable. Its growing around the nerves in the front left lobe (which control speech and movement). The surgeon has told us that dad will definatly become immobile and will need to go into full time care (he wont be able to feed, clothe, bathe himself) if we took that surgical option. So, basically we only have the chemo, radio and the steriods. Latest scan shows "dangerous" amounts of swelling around his tumor, that they cant seem to get down. They are pumping the drugs in and nothing seems to be happening. Im actually having a meeting with his doctors in a week to find out what is going on - if they know or dare to say. He's not coping well, hes very depressed. Im going to be making visits without the kids for a while now, because seeing them makes him very upset. He wants to be able to do what he did before, but just cant. I dont want to upset him. All i know right now is that i feel alone,im angry and sad all at once, im watching my hero leave and i just want to scream at the universe.... Thanks to you all i do feel better....I just wish they could make dad better too. ... View more