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