Hi all,
I'm so glad to have found this community to be able to speak to people who know how I'm feeling.
I am struggling with mobility at the moment, due to a tumour in my spine. Hopefully this will get better with the radiation treatment I'm having, but all of this is palliative now so I know it's probably only going to get worse. I'm really worried about losing my mobility and what that would mean. I am yet to meet with the Palliative Care team so suppose that will help to clear things up. My doctors don't really want to do any more chemo due to the rare complications I seem to keep getting, but I just feel like I'll decline so very quickly without it. I'm scared of the possibility of deteriorating rapidly - not necessarily of dying overall, but of becoming too sick to do anything I want to do anytime in the near future.
I didn't ask for a timeline - my doctors probably wouldn't be able to give me one anyway, given how rare my set of circumstances are. I have a feeling that it's shorter than my family thinks it is, and I don't really know how to handle that either. I just feel like I don't want to talk about it at all, it makes me uncomfortable to discuss with people in my day-to-day life. Avoidance/distraction is working in a way, but I worry that it's not productive. But do I care about what's productive anymore, or am I just aiming to get by as happily as I can?
The steroids that I'm on are also affecting my sleep, which is obviously not ideal and makes me feel even more off-balance. Just feels like everything is piling on, and I don't know where to even start! I'm always the problem solver, but I've been presented with a problem that I can't solve and it makes me very uncomfortable.
I guess I just needed to rant a bit, which is what this discussion board is for, after all. If you have any advice or just want to commiserate alongside me, please feel free to do so.
Sending love, prayers and good vibes <3
