Sooo jealous, but so happy for you also. Can't get my hubby to go on a holiday which we desperately need, mind you now we are back on the chemo roundabout not a good idea. You will have a great time and be able to create so many good memories. Haven't got some extra space in your suitcase for an 3 kids and their mum lol. Can't wait to hear all about it on your return. Safe travelling. ... View more

Dear Maddie, Honestly can't answer you meds question as haven't been there yet but you are often in my thoughts and sending you bundles of strength ..and I know that sounds crazy as don't have enough of my own but you and I know we don't have a choice but to keep keeping on. Monday is our next chemo clinic for the 5 day dose so next week is going to be filled with vomiting and all that goes with that. Really hope this period settles for you very soon. xx ... View more

Hi Maddie, I soooo hear you...I had numerous things to do with my teenage kids over the weekend and I am sooo sooo tired. My Hubbies sister and brother who live about an hour away decided out of the blue to come on sunday to visit..who knows why they have never given me any help and just made jokes about his memory loss (these are 44 and 46 yr olds). I asked if they could help out and look after him for a week to give me a break....they thought it was the biggest joke, not sure why they visited, out of guilt maybe but he slept for 24 hrs straight after they left. I had to be up at 5:30 to have our son at school for a 3 day camp. This avo he woke up and wanted to come with me to pick the girls up from school..I seized the moment and took him to Mac Donalds for a coffee...He proceeded to fold all the rubbish from the food into little pieces, something he has never done etc etc will not go into it but I definitely need to adjust to this different behaviour. Like you can scream out for help but no-one REALLY wants to hear.. so busy running around with their lives.. please look after yourself and you are one of many doing the best they can in the worst of circumstances..xx ... View more

Hi, You are in a similar situation to our family. I have a 16 yr old son , 2 daughters 13 and 15. My husband (their dad) was diagnosed with a GBM in 2009 and against all odds it shrunk, sadly in June this year he was diagnosed with 2 more in another part of his brain, this time he is not doing so well, had his own business also but had to give that up and I care for him full -time now but all cases are different and you and your family seem so positive, keep it up. My son unfortunately doesn't let his thoughts out so freely and also going into yr 12 next year is going to be a very tough time for him. Its a credit to you to come on this site and share your story and feelings. Take care p.s you can gain alot of helpful insite on this site but don't let it get you down, but I have learnt that if you need to talk there are alot of supportive people here. ... View more

I am just crying with you and feel your pain, I too just wish it would go away. My 16 yr old just had a fight with his dad (he hasn't smoked in many many years but we found he has been lately, which definitely won't be helping his GBM) but I know he was also just trying to say Dad "I just don't want you to die"...the two younger girls retreat to their rooms because I can't stop from loosing it with him. Obviously the stress is overwhelming for everyone but he used to be a fighter, always going to beat this horrid thing..now smoking, has he decided to give up?? I asked did he want to go somewhere, do something, but he barely wants to even have a conversation anymore, doesn't joke with the kids etc.. I am so sick and tired of being sick and tired and scared and lonely . I never thought I could feel so much pain and we still have our loved one with me. I am starting to hibernate as I don't want to be out and loose it. I sooo HATE this disease and like you said with others passed on just recently on this site.. I too wonder how much time we have, and how we are going to get through it. I so know your relentless misery and am so sorry for you and your son. ... View more

So sorry to read your posts..I am feeling just like you at the moment..life sucks. My husbands recent MRI showed changes which they said were "radiation effects", don't believe them and just have to wait another 3 months for another. Like you I am sick of my friends saying I'm here for you but when you need them are running off to a barbaque, blah blah blah. My daughter had a melt down on the weekend at an outing and called one of the mothers a f%#.. bitch so her mum tried to tell me, crying I might add how she has had to watch her father die..sad ok but at 85 yrs old what does she expect, him to live forever...not something you say to a child as they watch their dad die. Went to use the toaster today found out he had cracked an egg in it yesterday..no wonder its smoking. I took the kids to school and usually he is up for a reasonable amount of the day be it confused and agitated. I was so scared to go look in the bed room as I feared the worst. Luckily, he wandered out at 1pm. So he's slept all night and 5 hours of the day, I asked if he was ok, had a headache or anything and he said no...next thing he is back in bed and said he feels unwell. I feel just like you, expect with kids..see happy families doing stuff, planning and having holidays, renovating, shopping and here we are living on the poverty line, having to always say no to the kids, crying but trying to hide it from them. I am so sick of the deep pain. So hope your CT scan is positive and you wedding is all you want it to be in 3 weeks. Although are circumstances are different the cancer journey is nasty for all of us. I worry about trying to sell our house, as we won't be able to live here when he is gone. Where will we live, how will???? everything...people say they will be there for me, but if they are now now when I need them, why will they appear later. :( ... View more

Hi, Bought tears to my eyes, sounded like a beautiful day for a beautiful person. I can already feel the pain, is it better to live with someone who is "not there" anyway. ???? (I am saying that to myself, not meaning you). The pain of trying to make adult conversation for more than 4 hours today and as it gets more frequent my heart just aches so bad. Thankyou for sharing your day with us here, I feel for you at this time, take care of yourself which I can see you are planning to do. Something I need to get off my butt and start doing now, especially the exercise as I can feel the "Big black dog" coming back into my life. Cheers Wynette ... View more

Hi, Bought tears to my eyes, sounded like a beautiful day for a beautiful person. I can already feel the pain, is it better to live with someone who is "not there" anyway. ???? (I am saying that to myself, not meaning you). The pain of trying to make adult conversation for more than 4 hours today and as it gets more frequent my heart just aches so bad. Thankyou for sharing your day with us here, I feel for you at this time, take care of yourself which I can see you are planning to do. Something I need to get off my butt and start doing now, especially the exercise as I can feel the "Big black dog" coming back into my life. Cheers Wynette ... View more

So sorry to hear of your loss, I have only partial understanding. My husbands recent craniotomy was very different to one 2 yrs ago because this time it was in in the frontal lobe and so the confusion and fear I could see in his eyes post-op were heartbreaking. I could see his pain but they said they couldn't up the pain relief, he accused me of putting him in a pych hospital and begged me to take him home because he couldn't remember he had had surgery. Despite being in a private hospital he walked out 2 nights after the op in the pouring rain, crossed a four lane highway..all with catheter etc , I was beside myself as they took 2 hrs to locate him. I know none of this relates to you but it helps me also because I can relate to...I had a husband one week that was finally tumour free..to another tumour, craniotomy and now a husband and father with a changed personality, sometimes I just go out and cry because the man I love and married is not there atm. I prayer some of this function can be relearnt but I also will never want him to go through that again and he also says it is his worst fear and at 51yrs I'm very afraid it will not be his last operation. I have a long relationship with my GP and he helps me through the bad days. Don't be afraid to seek help my friend, you cannot go through your life without getting some of those memories filtered out so you have beautiful ones of him. 2 of our daughters 12, and 14 insisted they be there after theatre, but in hind site I would wait until later. You do what you think best at the time, and they just were desperate to see him wheeled out alive. I prayer you get the right person to cross your path and you find some peace at this awlful time. ... View more