Today- I had to be very patient today. The Tuesday after Vincristine is always Vega’s worst day. She started the steroids yesterday and this morning she refused to go to school, although theoretically nothing was wrong with her. I had an appointment at the rheumatology clinic at Kings for myself and was less than thrilled to take a whiny Vega and a busy Alys with me.
I always really suffer during the steroid weeks. I find it so hard to deal with her and stay calm. Vega turns me into her personal slave and demands food, massages, cuddles, TV channel changes. She requests an apple, cut into quarters and just minutes later has a huge screaming fit because the apple should now be whole. She can scream at me one moment and then speaks just fine with Alys the next. I often feel used and unloved. It doesn’t matter how often I tell myself that she is not well, that it is the medication but it does little to help me keep calmer. It is usually during steroid weeks that I start feeling so terribly sorry for myself, I think of how much I have given of myself to look after Vega these last two years, how selfless I have been, how many sacrifices I have made. As a mother I don’t expect anything in return, but it is during these crappy steroid weeks especially that I long to be acknowledged more, that somehow in my head there is a Vega that can, through the cloud of chemo and steroids, at only 5 years old, see how difficult this is for me and maybe take it a bit easier for my sake. Steroids are really screwing with my head.