My husband, John, was diagnosed with a GBM in January this year. He had surgery to remove the tumour then two days later had a massive bleed into the operation site leaving him paralyzed down the left side. After a week in hospital he was transferred to rehab where he spent two weeks learning how to walk and talk again. He worked hard at getting the use of his left side back and could walk a little with a quad stick when he came home. Had our home assessed and got in a both chair, toilet chair, wheelchair etc.... Started radiation/Temodal in March (30 days of rads & 42 days of chemo). Six week break then round two of chemo.....sick as a dog and begun losing what little function he had left in his left arm and leg! Had an MRI on 1st August after 4 cycles of chemo and it showed regrowth, a tumour about the same size as the first along with another smaller one. Oncologist said there was no point in continuing chemo and basically told him to go home and get comfortable and the surgeon said there was no Wayne could operate again because of what had happened last time and the depth of the tumour in the brain. Got palliative care involved and here we are! He rapidly weakened and has been confined to a hospital bed in our lounge room. I am his sole carer and apart from a visit each morning from the community nurse to help me change his sheets I do everything for him. His mind is still pretty sharp apart from some memory problems. His sight is deteriorating and he suffers daily from anxiety attacks. He has seizures from time to time, which I have learned to deal with, although they scare me. His surgeon said back in August that it was doubtful that he would make Christmas but here he still is. I can't be out of the room for more than a few minutes at a time without him getting anxious but he does sleep pretty well at night thanks to some good meds! Nobody seems to know how long he has and I don't know how much l can go on this way. He is adamant he wants to stay at home to die.
I hate that I am starting to get irritated at him at times and I feel that I'm going to lose my mind. Has anyone else had the feeling of not being able to continue? Am I being unfair? I've been caring for him for so long now........
