Glioblastoma- the confusing, scary and unknown!

[rarsie]

Hi Rain, so sorry about hubby, If we were told we would be staring this dreaded disease in the face many years ago, we all wouldve said "no I wouldnt be able to do what we are facing now, But guess what.. you are, I am and so many others are, just goes to show how when the going gets tough we get tough. May you keep keeping on and gain the strength you will need for whats in front of you and your family rarsie

[1232michelle]

Hi Everyone Apologise for not replying sooner. Welcome to all the newbies, although its not a you really wanted to join, it really does help. Since speaking last i have pretty much just been trying to settle back into living with Dad. He is going pretty well, just completed round 3 of 6 chemo sessions. He has minimal side effects which is great and it doesnt seem to stop him from doing much. After reading all your replies it makes me appreciate how well Dad still is and encourages to make the most of it. He is grumpy and gets overwhelmed by things easily and repeats himself alot, we've noticed he does not make eye contact with us anymore either. These things use to really upset me so I ended up going and seeing a psychologist. It was the best decision I have made. My poor husband is now working from home and is struggling with living in a new town so he is not the greatest support at the moment. However seeing the psychologist helped me see things in a different light. She explained that the lack of eye contact would more than likely be his brain only being able to process a small amount of things at once. The brain is trying to form the words and sentences and if he were to look at you as well it would be overloaded with trying to read your expressions and emotions.I have found that Dad does not know you are cranky or upset unless you literally tell him. Anyways she also gave me a little confidence in reassuring me that I will be strong enough to take on whats ahead and when things get a little out of control I just pop back and see her, this may not be for everyone but just so you know my Dr gave me a referal which meant medicare rebated about 83% of the money. Our next MRI is the beginning of July, i really hate these things, you either walk away happy and relieved or the complete opposite. Groenevelt68 - Dads last MRI had a blemish on it but the oncologist passed it off as markings from the radiation but a different oncologist said it may be the tumor, this worries me. Does anyoe else feel like things were rosy before this happening and now all you think about and do revolves around this gastly tumor? Best wishes to you all Michelle xxxxxxxxxxxxxxx

[tatsoi]

Hi all, I'm new on this journey. My dad (59) was diagnosed last week. It has been a scary two weeks leading up to the biospy result. and a devastating shock to get the news of GBM. I feel so teary and tired...to say the least. I won't write much just now....but would like to say Thanks for the stories. i feel less alone. xx

[rarsie]

Hi peanutz, just reading that hubbys tumor grew back in March, did you see it coming did you notice anything different, had he started more seizures Thanks take care rarsie

[rarsie]

Hi tatsoi. Yes this great to be able to go on and find you are not alone, you will find you can find out about us all when you go to each persons home page. Chin up keep fighting and take care of yourself otherwise you wont be able to take care of your love one Cheers rarsie

[peanutz]

Hi rarsie, My partner has never had what I would call a seizure. Whenever there is something wrong with him, it is usually related to brain swelling which causes him to feel sick, nausea, vomiting, headache, weak, and bad balance. Vomiting is the sure one for him being someone who hardly ever does it. Hope this helps.

[Groenevelt68]

Hello all:- 1232Michelle in regards to the blemish. We had an MRI in Sept last year (was it only then), which showed a blemish, the chemotherapist wanted to start Pieter on the trial of Avastin (we were to think about it), then in Nov she was away and the locum did not know about it and did not see what fuss was about with new MRI, so nothing done. Then in Jan this year the blemish was then 1.2cm in size and by March over 3cm in size (which by then was to big for surgery as it was located in left temporal lobe), had it been in the same area as the first two tumors then we would have had a greater success, and had Pieter for longer. So I am afraid there is a chance that a new tumor is forming but medical staff are still themselves learning more and more about these tumors, the brain is such a complex part of the body. Summer Fun in regards to tumors only being in the brain. GBM is a brain tumor, it affects the Glio cells in the brain. You know the old saying that we only use 10% of our brain, well apparently the other 90% (approx) is Glio cells and fluid which assist the neurons to work and it is a defect in the Glio cells that create the tumor. So yes, the cancer is only based in brain and do not travel through the body. GBM:- think of those little round mushrooms that you see, and when you touch it, it pops and the green spores flow away to land and grow again. Well GBM is similar, when operating the tumor once disturbed can do similar in regards to a cell or two breaking away and starting a new tumor within 2-5cm from original tumor, that is why most GBM tumors are clustered in one area. In regards to Pieter his first two where in right and left frontal lobe (within a short space from each other), but the third was in left temporal lobe (which was like GBM starting all over again as it was not associated with the first ones), which is why no surgery. For people who have re-occurring tumors in the same area of the original have a better chance for longer life. Rain76 in regards to repetitive phrases. Pieter also went through that, one day everything would be the word birdies, another flowers. Pieter also liked to know where we are, what we are doing. So I started talking all the time, just chatting so Pieter would know where I am, as he declined I would explain to him what I was doing, why I am doing it, it provided him comfort. In the end, as his breathing changed, I sat with him, telling Pieter I loved him, that we all loved him, and just before he passed away, I told Pieter that it was okay, that we will be okay (though inside I was screaming to Pieter not to leave me, us), it was his special time and to put my thoughts onto him would not have made his passing easier. I also prepared the funeral prior to Pieter passing and yes it did help. As I had started open dialogue with the funeral home and so once Pieter passed, the assistance from the funeral home was fantastic (it made me feel like they understood me). Though we did not get to change as much into my name as we should have so now the solicitors are helping me, so that I can get things arranged in regards to the property. So yes, I do believe that once cancer (GBM) is diagnosed, then changing details, making arrangements as much as possible is a great idea, as it does take pressure away. Peanutz in regards to tumor and spreading. I think I answered above. I am glad to hear hubby is going okay at this point. The journey is like a bad roller coaster in regards to how it affects the person and family. I think of you and all who use the site, as I have a good understanding of the current journey you are all on and I wish you all the strength, love, and a shoulder to cry on at any time. Remember that if you just want to vent, chat, or get stuff off your liver (so to speak) I am here.

[Summer_Fun]

Groenovel thanks so much for that information, quite useful. We just finished the third week of radiation treatment, we have to travel two hours south and stay at a house for cancer patients. It's a very supportive, caring environment, but I seemed to hit a hurdle last week and was very teary and sad all week. There has been no change in Dad, and he takes ages to do anything (half an hour to make his bed on Friday), and doesn't want to do anything but sit in his room. It's very sad. Great to talk about it here and share information.

[tatsoi]

has anyone read the dr Ben Williams book ? wondering if it's worth a read? also any other books that may have helped on this journey x

[peanutz]

I read this book. It provides you with Ben's journey with GBM, treatment options, and I think I stopped reading at the third part of the book which talks about problem with American health care system. My first impression of the book is that it gave me hope which in a way was good but on the other hand, I felt lost and frustrated when the doctors here did not agree to try anything but standard treatment. When standard treatment failed, you have 3 choices: try next chemo that is subsidised by the gov., find a clinical trial that sounds promising and hope that you can participate, or paying for your own next promising drug, Avastin - if your prognosis is not good and hope for the best. Ok, back to the book, if you are interested in the treatment options, it's best to read Ben's pdf file which is available from virtualtrials website, if I remember correctly. If you want to know about his experience with GBM, I find it's interesting but a bit short. I read Dr Chris O'Brien's book, Never Say Die, in hope that I would learn a bit about GBM and felt disappointed by the amount of content on GBM included in his book. I also read Life in His Hands which is about Dr Charlie Teo and a young pianist who was one of his patients, Aaron McMillan. I find this book is quite interesting in a way. It helps me understand what my partner has experienced. Something he tried to tell me and I couldn't understand, the author of this book captured and explained it well in the book. Having said that, talking with people here or other forums are pretty good as well.