Well, I've had a really great weekend and am now tired, slightly hungover but very happy!
Friday started by meeting up with the Under 50 group in Wimbledon. We had over an hour with Professor Ray Powles who is an old hat in MM (Multiple Myeloma) and who spent the time talking to us all about what's in the pipeline and a bit about how we should think about facing/ managing our treatment as and when it is necessary. The great things I took out of it were that
a) my consultant is probably doing the right things for me (even if he isn't great at communicating with me about what is going on with my body and what MM is/ what it does/ what the indicators all represent)
b) not to get to worried about my Paraprotein levels as they are all individual and that we have to just look at the pattern once we have that first reading. That was really useful to hear as I always wondered how on earth I could have a reading of over 40 and not need treatment but other people have a reading of 13 and be talking about SCT's and chemo.
c) that it would be totally acceptable to get him to give me a second opinion if I wanted it, and that I didn't need to wait until I needed treatment.
It was just so useful and I could have spent hours in there talking through the stuff even though a lot of it was focused on those already on treatment. Someone asked if it didn't scare me listening to what I'm going to have to face in the future, but I just felt like it empowered me and that I was starting to understand this damned condition for the first time in the year since I was diagnosed.
Anyway off to the pub after that for a large number of G&T's and a chance to start to get to know my 'cyberfriends' that I have met via the website and talked to on facebook etc. That was just lovely as they were all SO SO nice. And in itself that was positive as it was great to see people making the most of life despite what it was throwing at them all. And people in the same situation as me too, dealing with jobs/ kids and the fact that life is going to be shorter for us than we had expected.
Back to my sisters after that and then home the next day where one of my bestest friends came round, was a bad influence and kept me up drinking till 1.30am....I am totally going to blame her (nothing to do with me of course!!). So now I'm off to bed as with the kiddies being up at 6.30 I'm pretty shattered....but very happy.
Here's to friends and to making the most of life with them!!!