When my hubby was diagnosed with GBM in 2009 the DR said you will be dead in 3 months and walked out the door..He knew it was a brain tumour but he never researched it like me, never wanted to know and just believed he would beat it. Now it has just come back over 2 years later he has told the surgeon he never knew it could reappear. Looking back I'm wondering if that kept him so positive and alive for that time. Now he knows it can reoccur he is much more anxious and not as positive, hope he regains his thirst for survival with the kids and my help but it is a tough call. One only I think the individuals at the time can make together. Prayers for you and go have a wonderful holiday...I can't twist my hubbies arm to go anywhere and we soooo all need that break. ... View more

When my hubby was diagnosed with GBM in 2009 the DR said you will be dead in 3 months and walked out the door..He knew it was a brain tumour but he never researched it like me, never wanted to know and just believed he would beat it. Now it has just come back over 2 years later he has told the surgeon he never knew it could reappear. Looking back I'm wondering if that kept him so positive and alive for that time. Now he knows it can reoccur he is much more anxious and not as positive, hope he regains his thirst for survival with the kids and my help but it is a tough call. One only I think the individuals at the time can make together. Prayers for you and go have a wonderful holiday...I can't twist my hubbies arm to go anywhere and we soooo all need that break. ... View more

The above replies are so true, when my husband was diagnosed recently with a new GBM and especially while he was in the hospital, I got so many phone calls, text messages etc that between driving kids back and forth to school and going to the hospital it was almost too much because just when I sat down or laid down to rest someone rang and you had to repeat the whole story over and over. Now he is home, barely a call at all from anyone. I appreciated them but how quickly they forget and get on with their own lives. I try not to judge that as it will eat you up and just cause extra stress. I remember back to the life that once was and try to understand...people that have never had any major "event" especially a major illness in their lives just don't know the impact it has. My parents are very supportive but still struggle to be "there" at times for us, but they have said they just don't know what to do..and its very much to me like if "you haven't walked the walk...you can't talk the talk". So sorry for what you are experiencing, as hard as it is, try and filter out those people. I really like the saying: "Be who you are and say what you feel... Because those that matter.. Don't mind... And those that mind... Don't matter.." I used to worry about close family and friends going on holidays etc when we couldn't afford it or my hubby was having treatment, but I don't let it (most of the time anyway) take away my serenity. Very few get through life without "something" and as Wombat said those excluding you will have their own consciences to deal with. They just never know when your today might be their tomorrow and they may NEED you. ... View more

Sorry can't help you either with that question, my hubby gets alot of tingling in his limbs but no transient loss of function as yet. My main issues are that he is very indifferent towards the kids and I and lots of mood swings...its very wearing rolling with the punches, especially when often he doesn't realise to much later or even the next day what he has been like..seems to remember sometimes and apologises. We start chemo and radiation on these new frontal lobe tumours tomorrow, not looking forward to that especially for him...he doesn't seem well enough yet from the surgery. Huge appetite despite not being on dex which is a good thing so he has reserves if he gets sick again with chemo as he lost alot of weight last time. Thinking of all the others I have read their stories about..stay strong. ... View more

Hi peanutz and Sandra, Feel really bad now of how my post sounded, age group doesn't matter as GBM does not discriminate ah. Would love to chat with both of you, we all are going through similar issues so as I said , apologise for my post...not sure what I was thinking..must have been one of those "not functioning well days" :) ... View more

We felt the alternate therapy helped boost my hubbies immune system whilst he was having the nasty stuff...you know he has never had a cold or flu in 5 years despite the kids getting odd wogs..wcc and other blood never out of wack whilst on chemo and radium..hoping we can do the same this time, I have found you must go wiyh your gut feeling on stuff...you get so much information you just need to filter out what suits you and run with it...thats my experience anyway....from the hours and hours of research I have done on GBM's over last 2 1/2 years feels sometimes I am more informed than the doctors after all they are just focused on what they have learnt where those of us that search with an open mind find all the nitty gritty stuff!! ... View more

Hi, I am a new comer to this site, previously my husband had used it, but is not well enough to at present. I am his wife of 17 yrs and he was first diagnosed with GBM in the occipital lobe in August 2009. The surgeon only biopsied it, did not remove as said it was a risky area...had no bedside manner or empathy. Just told us the results said go and get your affairs in order, you will not make christmas. We walked out of that hospital with grief and disbelief but a fighting attitude. He had 6 wks of radiation and after 9months of temodal called it quits as he felt he was being poisoned too much. We both spent time at a health retreat on the sunshine coast, great detox and relaxation. We went and saw experienced bio dentist and had amalgams and my husbands root canal teeth removed. Over the next 2 yrs his health improved and with some alternate therapies the tumour shrunk away...all doctors were amazed. Booooom !!! April this year at a routine MRI (no symptoms) a new growth was found in the left frontal lobe...ended up being 2 after debate about swelling/radiation effect. Was GBM surrounded by lower grade II glioma. So the roller coaster starts again....we ar starting radium again on monday along with chemo. They are treating it as his first GBM with the same treatment because unusually it is so far away from the original it is out of the last radiation zone....not keen on the treatment after all the research I have done over the last couple of years, but between conventional and alternative you do not totally know what effect each is having. We have 3 teenagers, who have been wonderful, however along with myself are not coping with the personality changes associated with where this one is. I find I am a referee, carer, mum, alienated wife and nothing could have prepared me for the road we are travelling at the moment. My hubby remains positive he can beat this one also so we will begin to fight the beast again. Our strong belief in God gives hope...thinking of all the other families/couples/singles out there going through this awful experience. ... View more

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