My dearest husbands battle is coming to an end. It is at the point where death will be a blessed relief. The GBM brain tumour has sucked the essence of him out of the body that remains. This is the hardest time, watching someone you love suffer and feel so useless to help them. My darling children are suffering so much. It will be a blessed relief to have him go to God.
11 Comments
Contributor
sorry to of your suffering. it sounds like a truly awful time for you and your family. take care sending love, healing and light x
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Super Contributor
I'm sending lots of hugs to you and your kids.
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Not applicable
I feel for you so much, we seem to be traveling down the same terrible path together. Sending you love and hugs to get you through. Please please contact me if there is anything I can do to help or if you just need to vent to someone who is living this awful nightmare right alongside you Jan
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Contributor
im in the same possie as you... the nurse has said maybe 1 to 2 weeks.. and the thing is we only got married 3 weeks ago 😞 my new husband will be dead before christmas.. new year.. my birthday... i feel so numb i just am tired like you.. enough is enough now, enough pain and enough suffering.. im so very very over it! Every day is a stuggle for us.. please please have a shower but no he doesnt want to.. have your morphine but then i get 'your nagging me'... im utterly done! but at the same time i dont want it to be done.. i want peace but i want my husband with me.. what kind of warped world is this? fucked up i say! 😞 thinking of you xo
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Contributor
My heart aches for you and your children. Xo
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Occasional Contributor
We all seem to be in similar stages at the moment. My Hubby brain is really becoming more scrambled and you can hardly understand anything he is saying, or what he does makes no sense. Usually he doesn't leave the house, he just lye's down most of the day. Last thursday when I took the kids to school I left him on the couch with an ice pack for a terrible headache. When I got home he was gone...after searching etc a couple of hours past and I was beside myself..called the police who came out and were fantastic not long after he came through the door frantic..turns out he had started a fire by accident (not sure as he couldn't speak to us except for yes and no answers. He had no shoes on and had obviously tried to stamp out the fire with his feet. As a result he has huge blisters, all the skin burnt off one leg up to his knee. Ambulance came and took him to hospital to get his burns fixed. They are keeping him til monday when they will do an MRI. He has a nurse in the room all the time so he won't escape. When I visit he has no memory of what happened, is extremely paranoid about the room being bugged??? Won't let me feed him yet most of the food is landing on the bed and not his mouth. This is not my husband....I am getting a break I guess and still have the 3 kids at home for company but am so lonely and sad...just keep crying and feel like vomiting, as I can just see him there lying in bed just staring at the walls, but I know it is too unsafe for him to be home. Then when I do visit he gets angry at me because I leave him there. I don't want to go on like this anymore, the pain is just too unbearable but I have too be strong for the kids. This has gone on for too long, I am tired and just don't have the strength..need to go grocery shop but just want to stay in bed, as my emotions come out randomly and I am so sick of crying in public...anyway enough ranting. Hugs to you all, I too also want God to take him so his pain is gone but I don't want him to leave either 😞 😞 😞
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Yes we do all seem to be living the same nightmare, as are our loved ones! GBMs are indeed a horrible beast, they don't just take someone's life, they take all that is beautiful about them first, and they take everything that their carers have as well. I am so tired, what a cruel thing it is to have to watch your soul mate slowly die over months and months....it's been over 10 months now and John has been severely disabled for all of that time, thanks to a stroke after his surgery. A lot of people say 'let me know if you need anything' but I get they wouldn't be too keen if I asked them to help me roll John on his side so I can clean him up! They come, they visit, they coo and croon over the poor man. Stay awhile people, I'll be waking him soon to fight with him over taking his pills, letting me help him eat something, anything, or even whether or not I'm holding the urinal bottle correctly or just trying to trick him into peeing his pants! Some days I just want to scream but I'm afraid that if I do, I might never stop. Please all of you keep in touch, maybe together we can make it through this awful journey in one piece ❤️
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Contributor
Jan can I have your phone number an Netty I have tried to call you but never get an answer and wonder if I have the correct number.
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Frequent Contributor
I am so sorry there is so much pain here and I don't know how I can help anyone. I wish there is something I could do to help.
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Contributor
I cry tears for you I cry tears for the thought that I will write your words myself in the not to distant future. I pray that he gets peace, for him, for you and most of all for your children. Not only will our children have to live without their dads, but they have to watch this nasty thing take everything from them, and destroy them from the inside out.
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Occasional Contributor
Hi to my cc friends, this roller-coaster ride is really doing my head in. Firstly before I forget..Terese you do have the right phone number but I often unplug it from the wall when hubby is sleeping then forget to put it back in so on your end it just rings but we don't hear...sorry would love to chat, will try and keep it plugged in as he is sleeping less anyway atm. He is home from hospital after the burns incident and I truly believed he would not make it home. Wow the amazement of IV Dex...his wounds are dressed 3 daily and healing. He can carry out a conversation pretty well where on the day he went to hospital he could only mutter a couple of words which made no sense. We have a highset house so have made a bed downstairs for him to make life easier but feel like I have to sleep with one eye open. After taking his symptoms to a new level...leaving the house, getting burnt, etc etc it has scared the hell out of me and I freak out everytime he goes outside. I honestly thought we were in our last weeks with him , now apart from the very poor short term memory he is getting around himself etc. Can't keep up with the food intake (probs due to the increase in dex) and he gets quite aggressive if he does have a good meal all the time. I hate cooking and as the kids are now on holidays, they graze all day and then when I go to cook dinner, no one is hungry but him. They did an MRI whilst in hospital...same old story, radiation effects but the area the said is much larger than usual. The docs have decided to recommence his chemo as we had only had the first 2 months of it this time around, so that will begin next wednesday and we have another MRI in January. I am so weary of it all I just don't want to get out of bed. Things are going wrong around the house and he used to be the best handy man on earth. Now I am having to try and deal with all these chores, the car is way overdue being serviced and on and on it goes....this has been a long GBM struggle and it is all consuming and my patience is paper thin. I am jumping down the kids throats for everything, and every year for the past 3 I have said next christmas will be a good one, and something goes down just before hand to make me want it over..I should be grateful he is still alive, but then it is not him anymore and this lingering life is pure shit. Who knows what tomorrow will bring, can't make any elaborate plans. If you hadn't I am HATING life at present. At least the kids are home now and if I have to duck out someone can stay to keep watch, but not really rair on them. He did want to come to the shops the other day but an absolute nightmare, however, if I go out and not let him come he accuses me of keeping him hostage..have to remind him it is far better than hospital which is his other option. Still haven't found his car keys and his car is not in an optimal place...he will never remember what he did with them..all these little things don't seem like a big deal, but add them up and they become very frustrating. You cannot put a padlock on everything but occasionally when he is up to helping out, will put washing away. Kids have been looking for clothes etc..all found stuffed in the corner of his cupboard...aaarrghhhh..cancer is never nice but when it eats away at your loved ones brain...life begins to be a living hell and as everyone on here has said, all GBM sufferers seem to have quite different journeys and how long they go on for is the crystal ball I would love to look into. Everyone out there , take care and if anyone wants to come to Brissy and kick in some walls, I would be just great at it right now I know . xx
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