It's 2am and I am awake again. I have laid in bed trying to will myself to sleep for half an hour, may as well get up and 'update' on the last few weeks!
Greg has been home for just over a month, what a HUGE adjustment to our lives.
Physically: He has lost muscle strength. He is unsteady on his feet. He has a tremor in both arms most of the time,which sometimes intensifies for short periods in his left arm. He has the diaphragm reflex happening (like a hiccup/belch that is very strong and causes a real 'spasm' in his entire body). His handwriting is affected so is not very legible. He also finds that his hands are VERY sensitive to heat and isn't even able to hold a chip/piece of chicken with his bare fingers. Oddly, his tinnitus seems to have improved slightly! (Always a silver lining??!!)
Mentally: His thought processing is definitely impeded. He doesn't have a 'real' concept of time. His confusion is much less than it was during the time he was in hospital when the swelling was obviously creating big problems. He still gets muddled at times, not as noticeable to others as it is to me who is with him 24/7. Main issue is memory retention. He forgets that he has rung people and will ring them twice about the same issue. He doesn't comprehend things like he used to, things that used to be simple to him before eg. computer stuff, he is now having loads of problems with. He used to be very direct and to the point in his conversations (not in a rude way) but now tends to be more like me and give the looooooooonnnnnnnnnnnggggggg-winded version of events!! Very strange coming from him!!!
His behaviour is different too, he will have a visitor come to see him and while they are talking to him, he will pick up the phone and ring someone else and have a full on conversation on the phone. I find this quite upsetting, as I know that he would be horrified if he realized that he was being so rude. Problem is, his brain doesn't work the same now and so he doesn't know he is doing it.
Emotionally: Greg is finding that he is becoming more emotional now when he speaks of his 'situation' (which is totally natural and understandable). He says that previously he could talk about it quite 'matter of factly' and not get caught up in the emotional stuff, I actually feel that it is because he is talking about it far more often and in a lot more detail than he has done anytime in the last 10 months.
The Boys: Our two precious sons know their Dad has a tumour on the brain, they are seeing Silver Chain people, nurses (weekly),doctor (once for an assessment) and social worker (once to date) come into our home. They know we have a weekly visit to our family GP. They have had many 'playdates' while we have been to the numerous appointments in the last 6 weeks. We have taken them to one family counselling session and have another happening on Thursday morning.
Tomorrow or rather today as it is now 3.40am, I will be telling them that Daddy isn't getting better. I need to give them time to 'process' this news before school starts back on 1st Feb. It is causing me such pain to know that their world is going to lose its innocence.
Me: I feel pressure all the time from all different directions.
I worry about whether I have done the right thing with the boys up to now. I am anxious and scared and so very sad that this is happening at all. I feel overwhelmed about the mountain of things still to be done regarding our 'legal/financial' affairs. I know there are bills that haven't been paid just because I haven't got around to doing it. I look at the Centrelink forms and don't have the energy, physically, mentally or emotionally to complete them.
I am constantly trying to keep track of what Greg is doing/who he is talking to/what he is arranging to be sure that he doesn't do/say something that he shouldn't.
I don't feel like his wife anymore and that makes me feel really sad, it feels like I have three children now instead of a husband and two children.
If you made it to the end of this, then THANKYOU and congratulations, you deserve a medal for persistence and patience!!
I really should 'blog' more often and then it might not be so lengthy!!
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.