Now I know it’s the same for everyone but I’m really struggling at the moment to find enough hours in the day. Thank god I’m not back working yet! What with looking after the kids, trying to organise the ball and being ill, I just can’t quite keep up!!!
But generally things are going well at the moment and I am actually considering whether I could hold down work for a few hours a week. I need to see that I’m well over the next month or so, but assuming I am, I’d like to try to get some work. I’d hoped to do some voluntary work but that hasn’t come to anything so my first port of call will probably be to go back to hsbc whil I suss out how I cope. If they don’t want me, I want to get back into proper old fashioned personnel so may well offer my services to some companies for free to see how it goes while I get myself up to scratch again with HR law!!
But in the meantime, my health. Well, I had my appointment last tuesday and it went pretty well. I had asked to see my consultant as I wanted to talk through being ill so much to understand if the revlimid was the cause. Funnily she had wanted to talk to me anyway as my neutrophils had dropped to nearly 0.6 which is very low. She wanted me to have an injection to raise them but we also agreed to drop the revlimid dose. This was for 2 reasons. One is that she felt strongly that maintenance therapy is supposed to give you a good life, not make you ill. My transplant in the summer was supposed to mean that I could hopefully get a couple of years at least where life goes pretty much back to pre-diagnosis levels. And so far that’s not happening. Secondly it turns out that with at least one of the trials that showed revlimid to give a benefit, they had started patients on 25mg and dropped them to 10mg after 3 months. Well, I’ve been on 25mg for 3 months so I’d be doing exactly that. So my one fear that I’d be losing an opportunity is redundant which is great. Also, where I thought it extended my life, wrong again! They don’t know that yet. What they do know is that they think it can extend remission by up to 2 years. And they hope that will have a knock on effect of extending life prognosis too. Every year they extend it for me gives me the hope that just perhaps I’ll still be here when they find that cure!!!!
Right, I’m writing this on my iPhone which takes forever so I think I’ll leave the ball update till next time! Busy week ahead so I need some sleep.