About sezzy1983

sezzy1983

I agree with everything that has been said, honesty is def the best option for your children. Im in a similar situation to you 'husbandhasgbm' my husband had an oligoastrocytoma 10yrs ago and we have had chemo and radiation off and on but kept it at bay, not really knowing if it were serious or not?? In November of last year he needed a secondary surgery (first one initially when fist diagnosed in 2003) and they found that the oligo had shrunk but part of it had turned high grade, which they weren't sure how long it had been like that? I have an 8yr old step daughter and her mum and i are very close so we have spoken on many occasions about what we should be saying. We've told her that her dad has cancer and he's very sick, i know he has a gbm and i know the stats and how much time people usually have (we always hope we can be the ones to beat those odds) but how much should i go into it with her? Our neuoro oncologist has never ever given us a time frame, and i'm too afraid to ask! Can i ask, did you approach the subject with your specialist or vise versa? Because we've never been given a time frame, do i really need to tell her about his death when we don't even know, or should i approach that subject with her when he's in the 'final stages' god forbid that to happen anytime soon?

sezzy1983

I agree with everything that has been said, honesty is def the best option for your children. Im in a similar situation to you 'husbandhasgbm' my husband had an oligoastrocytoma 10yrs ago and we have had chemo and radiation off and on but kept it at bay, not really knowing if it were serious or not?? In November of last year he needed a secondary surgery (first one initially when fist diagnosed in 2003) and they found that the oligo had shrunk but part of it had turned high grade, which they weren't sure how long it had been like that? I have an 8yr old step daughter and her mum and i are very close so we have spoken on many occasions about what we should be saying. We've told her that her dad has cancer and he's very sick, i know he has a gbm and i know the stats and how much time people usually have (we always hope we can be the ones to beat those odds) but how much should i go into it with her? Our neuoro oncologist has never ever given us a time frame, and i'm too afraid to ask! Can i ask, did you approach the subject with your specialist or vise versa? Because we've never been given a time frame, do i really need to tell her about his death when we don't even know, or should i approach that subject with her when he's in the 'final stages' god forbid that to happen anytime soon?

sezzy1983

Thank you everyone for your kind words. I'm very lucky to have a wonderful support network, i actually need to reach out more, i think as carers we tend to carry quite a bit on our shoulders and because we can't control whats happening to our families we take on as much responsibility as we can because we can control where the dishes go, what to cook, what way we need to clean, bringing in money etc, i believe it becomes such a robotic response that it's hard to 'let go' I'm hoping things get better, it's such a hard life, i know there are people worse off but i'd love to look forward to something you know? Living day to day, it's hard work, you can't plan/enjoy life because it's all based on how your loved one is feeling (most of the time moody and negative, not a nice household, especially because i consider myself a positive bubbly personality) not that i dont love my husband, i absolutley adore him with all my soul, i'm just losing the man i know and although i see snippets of him in there, its heartbreaking seeing the 'otherside'. I also want my children to have a great dad, a dad who plays with them and reads to them and tells them funny stories, a dad who they can look up to, a dad to adore........thats the most heartbreaking thing in all of this. I've looked into some services such as home cleaning, so someone is coming out to 'assess' our situation then do the required recommendation. I'll also chat with them re other services around and i'm on top of centrelink. I really do appreciate you all taking the time to respond to me, i hate that you are all going through similar things, at different stages, i hate that others are experiencing this, but in the same breath we are all in it together and i'll always be here if anyone would like to chat. Take care everyone xxx

sezzy1983

Thank you everyone for your kind words. I'm very lucky to have a wonderful support network, i actually need to reach out more, i think as carers we tend to carry quite a bit on our shoulders and because we can't control whats happening to our families we take on as much responsibility as we can because we can control where the dishes go, what to cook, what way we need to clean, bringing in money etc, i believe it becomes such a robotic response that it's hard to 'let go' I'm hoping things get better, it's such a hard life, i know there are people worse off but i'd love to look forward to something you know? Living day to day, it's hard work, you can't plan/enjoy life because it's all based on how your loved one is feeling (most of the time moody and negative, not a nice household, especially because i consider myself a positive bubbly personality) not that i dont love my husband, i absolutley adore him with all my soul, i'm just losing the man i know and although i see snippets of him in there, its heartbreaking seeing the 'otherside'. I also want my children to have a great dad, a dad who plays with them and reads to them and tells them funny stories, a dad who they can look up to, a dad to adore........thats the most heartbreaking thing in all of this. I've looked into some services such as home cleaning, so someone is coming out to 'assess' our situation then do the required recommendation. I'll also chat with them re other services around and i'm on top of centrelink. I really do appreciate you all taking the time to respond to me, i hate that you are all going through similar things, at different stages, i hate that others are experiencing this, but in the same breath we are all in it together and i'll always be here if anyone would like to chat. Take care everyone xxx

sezzy1983

Hello everyone, I was looking for some support and hoping to speak with people and families in similar situations as my family is currently In? My husband who is 35 has been fighting brain cancer for 10 years (diagnosed at 25 😞 ), as a stage 2 oligoastrocytoma it was manageable with chemo as well as surgery. Part of the tumors had turn high grade in 2011 so without hesitation we planned to get married as soon as possible. Over christmas in 2011/2012 he had radiation. After radiation we received the wonderful news that we had fallen pregnant with not one but 2 beautiful little boys who would be born 9 weeks prem (thats another story) our little miricles born early but completely healthy and free of any radiation/chemo affect. A few months after the boys birth in august, so november, the nasty thing started growing again so he had to have surgery asap, after surgey he got terrible headaches and we found out that the piece that had been cut out had grown back dramatically in only 4/5 months! We then found out we were eligable for a trial for gbm sufferers and it shed some much needed hope, this hope was shattered when at the end of our 8 week trial the tumor had grown even more debilitating my husband so severely he now use a walking stick, who is so swollen with fluid I dont even recognise him anymore, who is so lethargic and depressed I dont even know what to say anymore, how do I give him hope whem he's so used to horrible news? How can I keep him upbeat when he looks at himself in the mirror and he hates who he sees as its a constant reminder of what he has growning inside his head? I try to keep upbeat and show him how grateful he is to have such beautiful children, I do everything I can to help and make things easier but he feels useless, of course its natural, I want my husband back, I want him to work and help me raise our children, cook meals, clean up, but he cant and somehow I know I have to accept that but its so hard, for us both, for our children, im up and down as is he, so my question, how do we live?? How do we get the best out of this life? How do I look after 8 month old twins, a disabled husband who physically cant help and emotionally isnt coping and a house? How do we stay upbeat? Im angry and bitter, scared, sad, lonely, grieving for what was and what has become...........im EXHAUSTED how do we keep this up? Sorry to be a downer, im just really reaching out to those of you who are living this too? I wont let this disease beat my husband and family, but I feel like sometimes I dont have a choice and it pulls us down. Thank you x

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