I feel gulty about saying that it has been hard coping as a carer I feel bad because it is worse going through the illness obviosuly, but having to watch someone you love deteriorate in front of your eyes is something I never thought I would be doing.
My hubbie has the normal headaches in February 2009 and took the normal off-the-shelf painkillers. The headaches did not stop, he started slurring his speech and not making a great deal of sense. For the next three months the GP told him he had a headache and it would go eventually and just get on with it. I tried to contact the GP and tell them that hubbie was not right and his personality had changed, but they would not talk to me.
I lay in bed one morning and said to myself I am living with a completely different person. I moaned at the GP and we were sent to a specialist. He also told hubbie that he had a headache and it was nothing to worry about. He also would not listen to me even though I was sat there.
In May(!) when my husband was crawling on the floor I bundled him into the car and took him to A & E where he was admitted and the next day I was told on the phone(!) that my husband had brain tumors and they were rushing him to London for surgery. By the time I got there they had decided not to rush him to London, but put him on steroids. The pain went instantly - he has been on steroids ever since, but never had any pain again a consequence of the steroids is that he has put on 4.5 stone and can no longer move around.
After the MRI scane which took another 2 months it was found he had a spec on his lung and they considered that this was cancer and the brain tumors where secondary. He had two goes at removing a piece from the lung, by CT scan assisted biopsy and both these tests proved ok. This confused the doctors so they looked again and could find nothing.
It was then decided to treat the brain tumors by radiotherapy and try to reduce the steroids. This week he finished 5 days of radiotherapy and just feels very tired at the moment. We have been told that next week, the treatment should start to kick in and he may feel groggy and sick and have possible hair loss. Reducing the steroids should lessen the weight and hopefully he will gain more strength.
We are currently waiting for a wheelchair, some walking aids and some aid for the bathroom and toilet so that he can get up and down.
The temper tantrums and personality change have been the worse thing for us both to cope with. After and outburst he calms down and knows he has been really awful, but can't stop himself from doing it. I know it is the illness and that his personality has changed, but it is still a shock to have this angry person beside me instead of my mild mannered hunter gatherer.
People keep telling me to take time out for myself, but I really am not sure what that means. I don't want to leave him on his own as I don't want him to be ill and me not be around. plus he doesn't get time out for himself anymore so why should I?
It's onwards and upwards at the moment hoping and waiting to see if the radiotheraphy has helped.
