It's a funny time of year isn't it? That odd bit between Christmas and new year and nobody seems to know what day it is. Right now I feel like I am in limbo. I signed up for the Radar trial and given I am 47 and a single mum, they are going the aggressive route to give me as good a chance as they can. Thing is, apart from having the four days of steroids when I was in hospital (got my diagnosis when they found the broken vertebrae in my back late November), not much has happened. I wont lie to you, my eyes cross when I read all the treatment terminology that others are using. I imagine I'll understand it all eventually and be running it off my tongue as easy as that, but right now it is all mind boggling. I have an arranged dental appointment, and another bone biopsy due, but apart from that I have no idea when things will be going on. I feel like I should know, but the go to conversations I have had with nurses, doctors and receptionists always start with "Because it is the Christmas period...". I have an OT coming out, but to be honest, I don't know what to tell them other than my leg gives out sometimes, or that my back broke out of the blue. They know I struggle with the stairs now, standing for any length of time etc. My GP was great, she also said that no one seems to know what is going on at the beginning. I have to confess though, I am scared, like terrified. Not for me, it's odd because I am not scared of dying, and I know I might have a long life yet, or not. I'm scared for my teenage autistic daughter, leaving her. I'm scared how she is going to cope during my treatment, which I have been told might be brutal at times. Odd I know, but I am not scared about the treatment either, not that I am looking forward to it, but it doesn't worry me. She won't be able to visit me often when I am admitted as the hospital is an hour and a half away, we'll be communicating daily though via the laptop. Honestly? I feel like a bit of a disaster. Went from having ME, hypothyroidism, breast lump, pituitary tumour and now this (with a few other things scattered along the way) and I feel terribly guilty. I know I couldn't have done anything to prevent this, but I still feel it. I wish I could make things better. I know, if this trial is successful, it will help make things better, but that doesn't help the mental anguish my kid is feeling every day. We are doing normal things though, watching youtube together, playing video games, all that stuff. I just can't hide the fact all the time that I am in a lot of pain and incredibly tired, and that worries her, and then kicks in the guilt again. Argh!!!! I wish I had the money where I could make it all that little bit easier, have a place more suitable to live in, have the means to go and relax at a seaside somewhere, but today had me buying a medical alert bracelet and an overnight bag. Oh well! There is always that little hope I'll win the lottery 
I am pretty sure that my words are going to resonate with someone. It's just nice to have somewhere that I can put out my worries and just be me, no pretending, no false cheerfulness, no walking on eggshells.
