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
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.