Leukaemic Rate Rising

By Katie R

3 min read

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.

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Ann Harper Moderator & Contributor
<inline-mention user-id="3646379" username="Katie Ruane"/> I know the waiting and wondering is always difficult. Hopefully you will get the news you seek when you go back. As hard as it may be, try not to stress. The results will be what they are no matter your stress level and stress is never a good thing. Please keep us informed about your results and I will say a prayer you get good news.
Daniel Malito Moderator
<inline-mention user-id="3646379" username="Katie Ruane"/> Numbers, numbers, numbers. Sometimes I think that's all we worry about, like some demonic video game where if we don't get enough points or we get too many, we lose. I had to find a way to distract myself from the constant tallying. Difficult, but not impossible, mainly understanding that the cancer will be a part of me now and forever, and since I've done everything I can do at the moment to stop it, there isn't much point in worrying. That and hiding in the back room and singing when no one else is listening. It makes me happy. Find your song, your happy, and sing it, especially loud when no one is listening. 😀 Keep on keepin' on, DPM
nichola75 Member
Hi. Gosh, completely makes sense why you feel anxious! I hope it’s less and less circling this time. Your writing always makes me feel hopeful so I hope your results are on the up x
rcgjr Member
I’m sorry for your endless worry. I have it as well. The worry will not end in our lifetimes, at least mine won’t. So we’ll have to fashion lives that include our worries. It is all cliche, but at some point every day there are moments during which something or someone makes me smile, even laugh, and I am reminded to pay it forward. People visit me, wanting to help, and they do, but I want them to leave better than when they came. It sometimes happens! Tomorrow? More worries and more life, until there’s not.