Today sucked. This week has sucked. Haven’t been feeling myself, haven’t been feeling well. Been trying to suck it up this week and work through it and act like all was well, but that’s a lot harder than it seems. A lot has happened since last week. The radiation has caused a lot of swelling. My doctor had to up my steroids once again in basically a week and I’m just feeling very frustrated. It seems that everything that could be going wrong, is. I’ve spent two evenings after work in waiting rooms instead of at home because the swelling wasn’t going down. 🙃
I honestly don’t remember much of these past two days. I feel detached from everything that’s going on and not because I want to be. The swelling is causing the tumor to put more pressure onto my brain, causing even more symptoms. My left hand has started to shake and feel all tingly. My speech isn’t always so good.. I don’t always seem to be able to put my words together and that frustrates me even more.
This tumor is taking things away from me. I’m afraid I´ll lose myself, that it’s going to change me in ways I don’t want it to. I’ve read all these stories about other patients and how the tumors take their speech, their ability to walk, move, eat, see. It takes their memories, basically takes their personalities. These people no longer have anything that made them, them. And that scares me. I know I probably shouldn’t be reading things like this, but how can I not.
My doctor decided it would be best to stop radiation for now due to too much swelling. They can’t get a clear image of the tumor as of right now, so they can’t rule out more growth just yet. (But I’m hoping it hasn’t grown😓) So we just wait for now. He is also pushing to get me evaluated. He wants a therapist to see how the tumor is affecting me emotionally and mentally. And If it’s causing cognitive issues because of how out of it they’re saying I’ve been at times. Looking into a physical therapist as well for my hand/arm before losing too much feeling and strength. This whole thing sucks.
Also had my eyes looked at this past weekend. Turns out I need glasses, ON TOP of my contacts. I didn’t know that was a thing! But guess it has already started taking things from me, huh… I went into radiation so confidently and now I just feel let down.. and to think this is probably only the first of many setbacks. 💔
I don’t think people realize how much a tumor affects the brain, malignant or not. The brain is the organ of self. It holds everything that makes you, you. It holds all your memories, all the function for the rest of your body, any slight disturbance changes things. And that’s freakin’ scary. Imagine losing control of movements, of emotions. But still, it’s underfunded and survival rates actually seem to be declining. I, along with others fighting the same battle, want more attention for this horrible disease. I want more people to be aware, to fully understand how much more research needs to be done so people stop losing their lives to this.
Spread awareness, donate, and help others like me.
Just “one of those girls” one of those strong girls.