Bored of Saying I'm Fine
I know I have probably written about this before. That’s the thing with being a chronic cancer patient, or I suppose a chronic patient with any illness. The same stuff comes up again and again but in slightly different forms. Different situations trigger the same emotions. Different conversations. Different people. Different settings. But it all boils down to feeling the same. I might just be a year older.
Feeling my energy levels decreasing
Over the last couple of months, my energy levels have been getting worse. Feeling heavy is returning. The lack of desire to do anything is becoming more permanent. A weekend at my parents doing nothing isn’t enough to recharge my battery. I thought I was done with this and I think that led me to resent how I feel more. For about five months I was feeling alright and when I started the new drug, I felt f***ing amazing!!! So feeling like this really feels like a slap in the face. I feel more fed up and angry about it all. I resent my treatment even though it’s the thing that allows me to live a ‘normal’ life. I feel fed up of saying that I feel fine when people ask how I am. This is really getting to me. It’s not fine. It’s anything but fine. But it could be so much worse. I have been worse. I am still surviving the day. I am still functioning. It’s definitely a lesser version of how I was a few months ago. And this is not fine.
I had a checkup 10 days ago. Waiting on my leukaemic results to see what my consultant feels happy doing. It should be really good; it has been really good. That is an amazing thing about this new drug. I am getting the best response in terms of my leukaemic rate in the quickest time, compared to others I’ve been on.
It's not fine, but it could be so much worse
So, as long as my latest result is as good as it should be, my consultant is thinking about letting me alternate my dose to see if that will help. So instead of it being daily, I take it every other day. I’m not sure if it will help. It takes me 10 days to feel like me when I come off treatment for a break, so I don’t know if alternating will help. I suppose it will mean there is half as much drug going into my body, which is not a bad thing. I definitely felt worse on the higher dose, so maybe being on half the lowest dose will be better. I don’t know. But I’m willing to try and I will go into it with an open mind.
It's always a problem that I am basically always on the lowest dose. There's not much they can do in terms of reduction, as I can't start cutting pills up.
I did ask if I could have 4 days on treatment and 3 days off, but that was a "no" because of the half-life of the drug. My consultant is worried that I won’t maintain my leukaemic rate and it will begin to go up. But, she did say she would think about it...
So at the moment, I’m a bit bored with it all. Especially saying it’s fine. But it could be so much worse.
What type of blood cancer are you or your loved one diagnosed with?