Learning to exist in a new body

I’ve been post-treatment for a couple of months now, and I am still learning quite a bit. I love my oncologist and my care team, but man, I’ve been really shocked by how much goes unsaid. In one sense, I do understand the psychological aspect of minimizing hypervigilance in patients – and I could see how the awareness of all the possible repercussions could lead to some psychosomatic manifestations (is there likely something like a placebo effect but more insidious?). I’ve been relying on Reddit to seek some validation and information about what other survivors have found useful. I am finding that for the most part, I am so much more susceptible to getting sick. And it’s been so damn annoying. I am trying to do better with my precautionary efforts, but I wish I had been given a heads-up. My last bloodwork results said my white blood cell count was within range, but now, looking at it, it’s just right above the threshold for what is considered “normal.”

Since I was young, I’ve had the understanding that we are all going to reach a level of disability as we get older, and thus disability access is important to ensure a good quality of life for all. I am just finding that I never really thought of WHAT items I need now to help me live as comfortably as I can. I joke I am a geriatric 32-year-old, and it really feels that way. I’ve been undergoing a new treatment to ease the discomfort of my neuropathy, and I am excited for the results. After my first appointment, I do feel a big difference, but I just need to make sure that those results are consistent. One thing I am most thankful for is finding an amazing oncology masseuse. Seeing and feeling the relief of the lymphatic massages has been a godsend. I am now aware that I can only have massages from someone who knows how to move the body and skin in a way that targets the affected skin and muscle. I had no idea how the muscle and skin are truly affected by radiation. On the side where the cancer was present, I had an itching, stinging, annoying feeling since the surgery. And I am so shocked that there are so few credentialed oncology masseuses in this city. She was able to help resolve that spot, and I felt such amazing relief. I am truly thankful for her. She also made me aware that I need to be careful with cuts and accidents on my right arm. This is because I had lymph nodes removed, and because of that, I run the risk of lymphedema. I was told by the oncologist that it was low risk, BUT the masseuse said it was more common than we’re made aware of. Should I have a cut and not clean it and address it asap, it could trigger that process. I am concerned about it but thankful I don’t have any animals in my care that could possibly scratch me. It was also fucked up learning that that is now a lifelong risk. How fucking insane is that?!

I am still grateful to be alive, don’t get me wrong. It often feels like I am complaining non-stop, but I guess I am just venting. I’ve also just been dealing with body image issues, but that really seems like the least of it when so many other things take precedence.

I am traveling for work tomorrow, and I am anxious. Since starting at this new location, I’ve experienced a spike in stress given the state of things and the never-ending list of detective work to figure out the gaps I have to fix. I really need to do even more to get myself to a good place physically, and I am learning this job and field is no longer doable.

I think that’s all I have for now. I will update more soon. Thank you for reading!