Leukaemic Rate Rising
Last updated: October 2019
It’s gone from 0.002% to 0.005% and for those of you into numbers, I know this is nothing. I really do! But, it’s gone up. There were around 6 or 7 detectable leukaemic cells for a couple of blood tests and now it's gone up to 30. Once again, I know this isn’t really anything. But, it’s gone up. And the thing that worries me the most is that it will continue to go up.
Worrying about the ups and downs
The logical part of my mind knows this is rubbish. These ups and downs happen. But, I want it to stay down. I don’t like the up. I don’t care if the results are still super safe and nothing to worry about. I’ve seen it creep up before and become not so safe and stable. And then the drug dose has to be increased. That’s what I’m worried about the most.
This is the first result while I'm back on the lower dose and I don’t like it. To me, it says that the lower dose isn’t as effective and I should be on the higher dose. But on the higher dose, I definitely felt it. And I’m feeling the lower dose at the moment. Which may be my fault for doing too much as opposed to it being the drug. But, I don’t want to risk it. As a sensitive responder, I do tend to feel worse as time goes on as the treatment accumulates in my system. I don’t care what they say about the half-life of the drug. It takes me around 10 days to feel like me again on a treatment break when technically it should be a day after I stop taking it. So half-lives mean f**k all to me.
Is it me or my treatment?
I have been wondering recently if I’m feeling more tired and the day is much harder because I’ve been on the drug for a while. And it’s not so much what I do, but rather time spent on the treatment. I have friends who do as much as me and they are great on 8 hours sleep. Not me. I can survive on 8 hours sleep. But I feel far from great on it! And I know those friends are 'normal' and not on treatment and that I do need more sleep than most. But still, it's just frustrating not knowing if it's me or my treatment. And not being able to survive on 8 hours sleep... that really annoys me. A lot.
So, the leukaemia rate going up a bit made my heart sink. I am back for a check-up in just over a week. I’ve had 2 months between checkups which is, well, astounding really! So we shall see what this next round of bloods say. I am hopeful. I’m always hopeful. My consultant isn’t concerned. But me, I'm just...
Obsessing over blood counts
I’m a bit obsessive about these little numbers. I would love it more than anything else to hit the ‘magic’ 0.000%. That means WOO HOO!!!!!! And let’s talk about coming off treatment if you sustain those results for long enough. That would be beyond amazing. That would mean I’m done. I can go. I have check-ups to see if it’s still not there. I would be more like a ‘normal’ cancer patient. I would be cancer-free! And that would mean I get my life back. I might never get completely discharged from the clinic. But I wouldn’t be on treatment. And well, that would be amazing.
But at the moment, that’s not quite the case. Not quite there yet. Still got those cancerous cells circulating in my body. But hopefully less than last time. I’ll know soon enough. Well, in about 3 weeks.
What blood cancer were you diagnosed with?