At a support group the other night, some of the folks mentioned that they found things got easier as time progressed. That is, it was really hard during that time of uncertainty when you first get your diagnosis, but it got easier as you were in active treatment. I hate to be the one to burst their bubble, but my reality anyways is that it has gotten a lot harder after active treatment. During active treatment your doctors want to hear about your side effects, they want to do something to help reduce the side effects you are experiencing. After active treatment, it feels more like they are abandoning you – you are not interesting anymore – and your longer term side effects are not something they want to manage.
So, for me, at this point in time, I’m finding things a lot harder than I did during active treatment. My doctors are telling me to go away and come back in 6-months, and yet I’m still suffering from side effects. I’m also having to deal with fear – the constant sense that every time a part of my body hurts I’m afraid of metastasis. Every headache, every muscle ache (bone ache), the arthritis in my back … all of it brings on a paralyzing fear of disease spread – and yet my doctors don’t want to see me anymore. I feel like I’ve become this high-maintenance patient because I want some form of follow up … I want some form of confirmation that I’m doing OK. I also want some validation that my side effects are real, and that they suck … and perhaps maybe something can be done about some of them (or not) … some of the issues will take time to get better, and there really isn’t much else that can be done … I do wonder if the doctors also feel powerless at this point? Maybe this is why they don’t want more follow-up? … because they cannot do anything about it either … only time will help heal some of my wounds.
My point is, I’m finding this time a lot harder than I found other times in this journey. I’m struggling to reclaim parts of my life, while I deal with debilitating joint aches, feet that hurt when I walk, difficulty standing up after sitting for a few minutes, and an inability to get a decent nights sleep … I’m trying to stay away from pain meds, and for the next week (pre-surgery) need to stop my anti-inflammatory meds, which in-turn means more joint pain and more difficulty moving, and more difficulty sleeping … and it all effects my mental and emotional well being. I struggle with not going down that rabbit hole of “what if the cancer spreads” but that fight is really difficult when I haven’t had enough sleep … maybe I just need a few more hugs … so if you see me in the next week, feel free to give me a real hug … cause right now, I don’t hurt so much physically as I do mentally and hugs really help!