That is the question. And god is my mind in a mess today.
Yesterday was my monthly appointment. I drove down to the Marsden in good spirits having had another good month of feeling 100%. Work is going well, netball is fantastic (I’ve just invested in a new kit!), and I’d been really healthy. The summer holidays are here and we’re off to Morocco in a couple of weeks.
So I went into hospital, with my only worry being that I might be a little more neutropenic than I was last month and whether that might impact on my travel insurance cost! But the doctor happily told me that actually my levels had gone up to 1.45 and looked better….fantabulous…all was looking good for going on holidays and having a good time. He went on to say that all my other normal bloods (blood readings) were looking pretty good too.
So it was a bit of a shock when he then went on to say that my paraprotein had moved up very slightly. The paraprotein for those of you that don’t know, is, for most myeloma patients, the best way of measuring how someone’s myeloma is progressing. To give you an idea, mine was at 34 when I was first diagnosed and it was the reason they were worried I might have myeloma. It then rose and was about 50 by the time I had my transplant. But many people have symptoms when their levels are much lower, and second time round, it is watched much more carefully, and generally treated much sooner.
After my transplant my paraprotein level had reduced to 2 which was fantastic….and about 2 months ago, it even dropped to 1! I was talking about whether one day perhaps I’d hit zero with the aid of revlimid, and count as having reached ‘complete remission’. But last time, it had gone up to 2, and this time it had gone up to 3. Now these figures really are very small….they may even be a blip. There is nothing to say that this is major….apart from the fact that it HAS gone up. Even if it is only by 1. And that my doctor that I saw, raised it as a slight concern. He admits it may be a blip…but he also made it very clear that they will now be watching carefully and that if it continues to rise, that they will want another Bone Marrow Biopsy and set of xrays to see whether there is anything going on in those damn bones of mine. To the extent that he wants me to call in this week to see how my readings are as if they HAVE gone up, he wants me in earlier than I would have otherwise gone in.
So, what does that actually mean….haha…wanted to swear quite loudly there, but can’t use the language I want to given that my mum reads this! It doesn’t really mean much at the moment. And in the rational part of my mind, I know that until I phone for my results on Friday, I should just potter on with my life, think positively and not worry. I’ve spent the last two years becoming more and more positive, and feeling SO good for it.
But realistically…..well, I’m now in panic mode already. I’m already wondering whether I need to rethink about whether I should work; about how long, if I start treatment, that I’ll be able to continue to play netball for; about whether I’ll see Sam get to secondary school; about whether I should start planning my playlist for D-Day!
I’m already scared….it has reminded me of how it felt when I was living with a big unknown.
And for the first time since I was diagnosed (I think!), I have had the feeling that this is so unfair, why have I relapsed so early, why couldn’t I get the remission that some of my friends have had…..and then the guilt for not being grateful for what I have had.
And then of course, I slip back into slapping my wrist and saying that come Friday, my paraprotein may be back down at 2, and all this worry will have been for absolutely nothing! And that even 3, is a long way off 34!
Real or no real…..I just have to wait and see….wish it was more like the Radio One game where you got your answer straightaway….
