It has definitely been yet another rollercoaster over the past couple of months! After my last results showed an increase of 2, my February results were stable…..brilliant news of course, although I can’t really explain rationally why there was a small part of me was frustrated at the lack of pattern and the fact that my head seemed incapable of keeping up with the change of direction.
So I spent the next few weeks, trying to get my head around the fact that perhaps the rise of 2 was just a blip and that, yet again, I’d told too many close friends about it, when there was nothing wrong with me. Such an attention seeker. Such a fraud.
And then last month, my bloods came back having risen by 4. And I could tell from the tone of the email, that my consultant felt that this wasn’t good news…that and the fact he asked me to come back for bloods to check if it was an anomaly or whether we are dealing with a clear relapse. So yesterday I went back to have them redone and next Thursday, Nick and I will head back to find out more. That said, I can’t wait till then so have already asked to be told the results asap….and since 11am yesterday morning have therefore been watching my phone non-stop….argh!
I’m back to reading myeloma articles and starting to look into treatment options. There’s been some great news this week about a new drug being approved by NICE for first time relapse patients like me. So, I’m imagining that I’ll be deciding between that and going on the Myeloma XII trial …the first would be ongoing treatment, whilst the second would hopefully push me into remission again….who knows, maybe for another 8 years – but would make me severely ill for a while too.
I’m a bit all over the place if I’m honest. I just want to know if I’ve got to front into treatment and a new Stem Cell Transplant, or whether we can get on with things like normal. I can’t believe I’m back here. Back thinking about funeral songs, back thinking about what I can’t do if I’m back on treatment, back wondering about my ‘Bucket List’. It’s totally crap if I’m honest. I thought I’d got past all that negative thinking when I realised that I’d done so well with 8 years in remission. But now I’m back here, I realise it never fully goes away. The fears, the paranoia, the sadness.
Somehow I will get back to being my positive self. I think I need to get an element of control back to myself – that’s the worst bit about myeloma…you seem to lose all control. I don’t quite how I’ll do this….I’d like to get back into fundraising but I’m not sure how healthy I’ll be to do that, or exactly what I could do. If anyone reading this has any great ideas, I’d love to hear them. It really helps me take my mind off what is happening, but I need something that isn’t too stressful or too demanding if the chemo starts.