families living with gbm

[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

[exhausted]

I have sent you a private message.

[tropical]

Dear Sezzy1983, My heart breaks for you and your familly. I can't imagine travelling this road with babies, and I admire you for doing an amazing job. Every single Brain cancer carer on this board understands your fear and sadness. There was so much talk of the 'new normal' when my husband was diagnosed. For some reason, I thought it would be a happier, more content time. Unfortunately, this GBM diagnosis has kept us on our toes and I only recently realised THIS IS our 'new normal'. Having said that, compared with you and others, we've been fortunate. My husband has remained essentially himself. He can't stand looking in the mirror, but without the steroids, he couldn't function as well as he does. Do you have family and friends who can help you with your emotional and phyical work load? I'm so sorry I can't offer you anything else. Please take care.

[little_stitcher]

Hi Sezzy, I can't imagine what you're going through, but one thing that struck me as I read your post is that you may be eligible for some sort of government assistance. There is a scheme which gives people a certain number of hours a week of help around the house etc. The Cancer Council will probably be able to point you in the right direction if you're interested (Centrelink could also tell you, but dealing with them may just be too much stress). I'm sending you hugs. Emily.

[Melanie]

😞 I'm so sorry that you have to be going through Yes, I am unfortunately in the same boat- I'm 31, my DH is 35 and he was diagnosed with a stage 3 astrocytoma 1 week after my second daughter was born. It is hell, unbelievable, rollercoaster through hell. Although, it does get easier- I know that sounds hard to believe but it does. My eldest is almost 4 and my youngest is now 15 months, and life is alot easier for me & the girls now. Do you have family support? This is how I cope, and it is also how my girls get a bit of respite for themselves. They need someone who can give them 100% attention, just once in a while, which understandably is very very hard for me to do. If I take them out, in the back of my head I am worrying if he has fallen, or hurt himself at home. When we are at home, I am caring for him, then them, then cleaning the house & making the food. I joined a gym, Fernwood, for 2 reasons- one, so I could have a shower & breakfast on my own if need by and two, so I could get some exercise. It was the best thing I ever did, gave me perspective, especially during some of the dark times. I spent many a day crying on the treadmill. I am always around, if you need to chat, send me through a pm We will survive this, this I promise you.

[maddie86]

hey there im so sorry to hear about your husband... i hope you both have good friends and family you can rely on... would you be able to put your kids in childcare a couple of days a week? that would give you a break and would give you some time with your husband... i work in childcare and i think its wonderful for children to grow and learn with others their age.. i lost my husband in november last year and although we didnt have any kids i found it very tough.. he was only 26.. we wanted children but he was worried that the chemo and radio would have affected his sperm... please feel free to message me anytime xo

[jobeth]

Hey there. For mood, try Mirtazapane. It's an anti depressant and absolutely vital for terminally ill people. My husband was very low and very difficult to deal with. The meds worked. We are at the end of life stage. It's an awful disease. Take care Jo

[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

[pdh]

Hi Sezzy 1983, A bit of trivia, my niece is a Clinical Nurse at the Mater Private Hospital in Brisbane she too is called "Sezzy" real name Sarah and when her cousin was wheeled out and put into ICU after having a Craniotomy for clarification of her diagnosis of a Brain Tumour Sezzy told them " Look after my cousin or you will have me to answer to. A huge protection mechanism is put into place when someone so close has been diagnosed with this horrendous disease. My daughter, like your husband was told before surgery it was Oligodendroglioma but after the craniotomy was told by pathology it was a Oligoastrocytoma grade 2. Hers was inoperable to close to brain function that you need to get you through the day the Dr. said. So she had 25 sessions of Radiation. At this stage Chemo is not required so that is money in the bank for later on. She had only one part of the 1p 19q co -deletion which if positive for both the prognosis is better. Did your husband have either of these. My daughter was diagnosed just before her 37th birthday in 2011, she has just turned 39 and comes to Brisbane next Monday 26th May for her 6monthly MRI. As you well know we are feeling a little stressed at the moment. Her twins a boy and a girl had just turned 4 and her other little one was 2and a half at the time of diagnosis. Her husband is her primary carer and because I live in Brisbane I am her secondary carer. Your husband is so very lucky to have you as. My daughter is to have her wonderful husband. My daughter lives in central Qld so I fly out there often. I only came back a week ago and I am going back this week when she comes down for the MRI. Her twins are in grade 1 and the other one in kindy. They have their own business and my son-in-law sometimes has to work away so I take care of the children etc. my son-in law is wonderful just like you Sezzy , don't ever be to hard on yourself and you deserve to let fly with all that emotion that creeps up on you. Brain cancer has the biggest impact both. Emotionally and financially than any of the other cancers, because it is the Master Gland, it's what gets us out of bed in the morning and hopefully allows us to enjoy this life we were all meant to have. Do you have family around you although I have found they dont really understand. I actually find it hard to talk to mine and unless you are living it you really don't know only people going through it. When I wake each morning my daughter is the first person I think of and because I am in Brisbane I ring her to check on her day. Radiation has.left its mark and she is literally stuffed by the time she has to get the kids from school. So her husband try's as best as he can to organise his business around her day to be home to help. Most people don't think outside the square and I get rather annoyed Ihave to bite my tongue sometimes for fear of offending people. Your hands are full with your little ones and I know what twins are like I have been their with my daughter. Then there is the house shopping bills to be paid and lots lots more and that's without looking after your husband. I have another daughter in Brisbane who also has 3 little children and and up until recently I was helping her out 3 full days a week as she works part time, that has now dropped back to 2. I do that every Tuesday and Wednesday then jump on a plane and go to Emerald on Thursday to help my daughter if they need me which happens a reasonable amount of time. My husband is on long service and due to officially retire in July, no long trips away or exciting times to plan. If one more person says to me "Try not to dwell on it if you can" or "Stay Positive". I. Think I will scream. I even feel sorry for myself and I feel guilty about that. I just never thought one of my children would have a Brain Tumour and the fact. She is an adult child and I can only suggests things. She and her husband do include me which Is good of them. She just gets on and lives her life as she says she knows things will go belly up she just doesn't know when. Her Neurosurgeon didn't give a prognosis just said it will shorten her life. She lets me do all the research and checking on new drugs and treatments etc . When I look at my grandchildren it always goes through my mind how long. Will they have their Mum for as I am sure you do with your little ones where their dad is concerned.When I come home from being with them all I usually have a bit of a meltdown. It all becomes overwhelming at times and I cry, yell swear a bit, no make that quite a lot and really feel like slapping someone anyone just to get rid of those highly charged emotions.You are in a worse situation than my daughter and I am dreading any changes that I know. Which eventually happen . You are in my thoughts and I hope you have some good days in there somewhere. Take care of yourself, it's good you have a good network of people around you. They need to take care of the Carer.