And the Good News Keeps on Coming
It’s a bit weird getting good news two appointments in a row. I can’t really remember the last time that happened and I felt good! I used to get good Leukaemic rates repeatedly but I felt horrific, so I didn’t really care in the same way. Obviously, it was always good that it was behaving, especially if it dropped after shooting up after a drug change. But it was never really *that* great. But after my last appointment, not only was my leukaemic rate the lowest it has EVER been but my energy levels are also the highest they have EVER been!!! I even said to my consultant that I had been for a run. My consultant was, well, speechless isn’t quite right but she was certainly amazed. To be fair, so am I. It’s still really weird to be feeling like this, even though it’s been a few months now. I’m still not entirely sure how I should be, which probably sounds completely ludicrous. It’s just for so long, I haven’t been me. To be me again, well it’s really weird.
Finding the right treatment dose for my leukemia
Another great thing is that last November my dose was increased as I tolerated the lowest level so well in terms of how I felt, so my consultant thought it was a good idea to see how I was on a higher, more standard dose. I did notice that I began to feel more tired and didn’t feel quite as ‘me’ as I had before. I thought it might have also been because of doing way too much but I wasn’t sure. So I flagged this with my consultant in my check-up before Christmas and they agreed I could drop the dose back down. WINNING! And after a few days, I began to notice that I felt a bit lighter again. I wasn’t so tired in the evenings. Things didn’t take the same amount of effort and generally, I was happier again.
Hopefully, the leukaemic rate will have stayed as low as it was when I was on the double dose. I’m waiting to hear from my consultant. In all honesty, I wouldn’t be surprised if it has gone up a little bit, but because it is SO low, it really doesn’t matter at all.
A welcomed break between oncology appointments
I was also given 6 weeks off between appointments!!!!!! I genuinely can’t remember the last time this happened. I’m sure it has occasionally happened over the last 5 or 6 years, but it does feel like I have been there weekly to fortnightly to maybe 4 weekly for far too long. This is really good because going to the hospital is tiring. It does take it out of you. It does also take up half the day, so to have such a big gap is really fab.
I have noticed though, that since I've been going to the hospital earlier because of having more energy and being able to get up earlier, that the appointments are much shorter!!! Instead of at least 2 hours in clinic waiting, I have been in and out in just over an hour! And because the drug seems to be so good, I’m happy to take a prescription that covers a much longer period of time (I absolutely HATE drug waste) so I don’t then also have an hours wait for pharmacy.
So all in all, 2019 is turning out to be pretty good so far!
How long did it take to be properly diagnosed?