Its been awhile now since I have been on , I think since xmas as the kids used up our downloads and it being taking an hour or more to load a page so i gave up. All good in that department now. Many thanks from Therese for phoning me as she had noticed i hadn't been in contact..such is the wonderful nature of this site.
We have been rollarcoastering and I really feel I am at my limit, wake up and don't want to leave bed, I feel nauseated most days and it takes all my strength to shower...doc says its my body saying you need to rest, others say I am lazy and need to be busy ...come live with me for a day is what i say yet no-one has taken up the offer.
Stephen ended up with bilateral DVT's which snake up each leg from ankle to knee...we were at the chemo clinic when my GP rang to say he needed urgent vascular scans. They did them whilst we were at the hospital....like I said I am on the verge if not already having a breakdown and told the social worker the whole house was falling apart. Our son and his dad were about to knock each others block off ,the girls were sick of him stalking their rooms for snacks (horrible effects of dex).
He was put on clexane twice a day for 6 months and sent home..half way home I got a phone call to say could we bring him back for admission.. they had had a discussion and reliesed I desperately needed time out. I had him back within an hour...sounds so mean but I didn't know how much more I could take without a break. I got 4 days which I am grateful for but in that time had to get dog vaccinnated, car serviced as miles over due etc etc so really no break to chill.
Since he has been home, very stressfull..is so obsessed with food, because I the high dex plus they have put him on zyprexa (a antiphyscotic) because of his slightly aggressive behaviour which they feared may get worse which also increases your appetite so according to him I never feed him yet he eats the house out so fast i cannot keep up with the food bill not to mention the huge amount of kgs he is putting on.
Its all soo soo sad,my heart breaks for him yet on the other hand I have had enough. The kids are retreating more and more to my mums and friends - I guess they find it easier out of here.
Had an MRI whist in hospital and the occipital lobe tumour which has been dormant for 3 years has now grown plus the frontal lobe 2 operated on in may 2012 are growing.
He has slowed down heaps in just the last month..memory worse and worse and he sleeps more often during the day.
Hospital he was in gave referral to palliative care which we have just been through this week...very traumatic having to make decisions such as no active resus if ambulance needs to be called (apparently QLD is the only state which still has laws that they have to resus, ventilate etc if called in emergency..if he is already in hospital they will do nothing active due to GBM being an incurable disease, but having to make that move on your hubby who is only 52 breaks your heart although alot of days I wish it was all over as he is just a shell of the man I married. There is slow deterioration on a weekly basis but the million dollar question is how much longer??? I believe i am very tolerant and when people visit he is so pleasant to them, but when the go I cop it....it does wear you down to breaking point, but for the sake of my 3 kids I have to go forward as much as I could pack it all in.
Enough rave you will be glad I haven't been on for a few weeks.
To all of you out there fighting on, keep the faith, its a hard relentless job and when the brain goes you have no emotional bond/support or soundboard so life can become very lonely....
We were given 3 months and have had 3 years so should be very grateful but now it has invaded the frontal lobe it is a whole new nightmare..his living was a handyman so ne has the foresight to see something has to be done but cannot carry through the task. It must be very frustrating for him but also myself as he could always fix everything, now everything seems to be packing it in, he can't fix it and so I have this overwhelming pile of stuff stacking up.
ALL cancer sux, GBM especially as it is our whole life atm and family and friends can not understand what you live with 24/7.
I guess thats why this place is a great place to vent as you know those who are going to read it will genuinely understand.
Cheers for now
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I have never heard of someone having to pay for radiation..it seems almost criminal to me. My hubby has a GBM (grade 4 brain tumour...has just finished his second lot of radiation as the tumour reappeared 2 yrs on. We were never ever told there would be a cost. I am gobsmacked...you need to be asking questions to your oncologist/radiologist or GP, my heart goes out to you as I think it is a disgrace. I live in QLD , not sure about you and whether other states are different, even try cancer council for advice.
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Give yourself a huge high five..you have done extremely well so far. I don't have cancer but travelled the addiction path to cope with hubbies illness..really bad excuse but we all make bad decisions.I still battle every day , but for you when the drugs are a necessity I admire what you have gotten off . Scream your lungs out, and with hubby if he has always been a support for you he will understand the issue with you today. My husband was never really supportive of me and now I am his carer...I often feel like screaming at him for so many reasons but I will feel really guilty afterwards and it won't achieve anything. But I am very over this rollarcoaster ride with cancer it has gone on and on for way to long and now hubby can do virtually nothing but eat, eat eat from those horrid dex..I do want do go to sleep and not wake up but with 3 teenagers thats not going to happen but life is very hard and I am exhausted...so if you hear a huge from Brisbanes direction, chances are its me.
Hope you have a good sleep and tomorrow it a better day.
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Hi Sweety, Absolutely cry if you want to. My Hubby is still alive but I cry most days now as I can see the deterioration and 24/7 . Happy Birthday and heaps of hug from me as I know I just want to escape this nightmare. As you say it is still raw and fresh..be kind to yourself (I know you are probably sick of hearing that as am I) but you need to my friend..wish I could change the world and rid it of this awful disease . May much love and hugs surround you at this difficult time. xxx
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Thankyou for your message..we had a great day as I truly believe this one will be the last with the kids and myself, but then with GBM"s you can never tell so I have seen. Hubby did struggle alot today but never complained once..I have so much admiration for him..not just his tolerance of pain but his wanting to be with us all day when I knew he needed to go lie down.
Hope you had the best Christmas as far as Christmas's go with CA sufferers .
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I agree totally with Emily..we are dealing with GBM but for the first 18 months were fairly ok...now we are hitting a dark stage..personality changes, him lashing out at my son in a big way..he doesn't act like an adult and to expect my son to tolerate him is questionable at the moment as I have explained as much as I can about the illness to the kids but clashes happen...I already also had an anxiety order plus PTSD so go figure....I hate to say this about my hubby but he is causing so much unrest in our family..eg when we go to bed etc it is driving us insane. enjoy xmas as we will try to as wellxx
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So grateful for your phone call..just when I needed it most. My thoughts are with you as you bring Stuart home for Christmas...just pray you have the strength to get through it and out the other side. It is going to be a bitch of a Christmas for alot of us :((((
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Can hear you my friend but haven't been to "that otherside" yet..can hear your pain but at this stage can only visualize the pain whilst still living..when hubby dies don't want to imagine the new greif. ATM having breakdowns with friends who don't understand, and got quite offended when he abused them for coming quite late one night (fair enough). I feel like telling everyone to just go away right now and give us all a break..they may mean well but I feel smothered and need a break... This friend is close so if she takes it personally maybe she is not meant to be in my life anyway....hating everyday at present, can't imagine being a newly wed and loose your loved one so fast...so awful words cannot comfort you. xxxx
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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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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.