I thought it might be time for a bit of an update – I only ever seem to write when things aren’t so positive – or I’m after fundraising donations 🤣.
But actually neither is the case this time (well I could do the latter but I won’t!!). My paraprotein numbers continue to frustrate me, Nick and the consultants by going up and down so that we never quite know if a rise is a blip or something to start worrying about. They went up to 8.5 two months ago, but thankfully have dropped back to 6.5. I’ll find out later this week what this months look like – but to be honest we have to wait for two continuous months before we worry/ relax. It’s hard because it’s never off your mind but at least they’ll pick up problems early.
I think last time I wrote I talked about whether or not to stay on treatment. But I spoke to my consultant, and, unsurprisingly he convinced me that it was likely that the drugs were keeping my numbers down and that if I came off, that could change. I knew that of course. And I probably knew it wasn’t really a choice. But I also felt like I needed him to know I was struggling a bit with it all. The reality is that no matter how hard I can find it on treatment weeks, trying to balance work and home, that a new drug could be far worse for me. Far more toxic and far less accommodating. So I’ll stay on Dara for as long as I can – fingers crossed that will be for some time!!
And while that carries on, I’ll keep going with everything else. I don’t think life has ever felt so busy. Work takes up huge amounts of my time these days….but I really love my job and so it all feels worth it. It certainly helps to cover the current bills!! I’m still cycling regularly and try to do a 40 miler most weeks – two if I can fit it in around everything else we’re doing! I’m continuing to try to get Nick to join me but unless I can find a whisky bar at the end of the ride I’m not sure if it’ll ever happen! And we’re doing the ‘nearly last part’ of our house renovation. Just got Sam’s room to do after that – just when we thought we didn’t have to, he has started to keep it tidy!!
So that’s the update for now. I’m sorry if I’m rubbish at keeping in touch these days. I don’t mean to be, and people are always flitting in and out of my mind (often while I’m cycling!) so it’s not a lack of thought…just a lack of action.
Debs' Journey with Myeloma 