The experience of having cancer never ceases to surprise me. Now that my treatment is over and cancer is long gone, I assumed I would be well and would be able to resume a completely normal life. I am totally wrong about that.
I’m now almost three years since diagnosis and just over oa year after treatment ending. I know people think it should be a distant memory and that all is well now that cancer is gone. What I am learning, rather reluctantly, is that my body is probably going to take a fair bit of time to recover from all the treatments. I underestimated their impact on me.
I still have side effects from chemotherapy that go away in most people, but seem to be sticking with me. I have a level of fatigue that makes my body feel like I have a cold and can’t breathe every single day. I have always been a positive person and even when cancer was kicking me down, I managed to maintain my optimism. But I’m getting weary and I am constantly sick due to having poor or no immunity and living with a preschooler who is like a walking Petri dish.
People expect me to be fine, to be back to my usual self, and to be bulletproof essentially. They exclaim “you look so great” when they see me because my hair has grown back and sometimes I manage some makeup, so that the chronic anemia doesn’t have me looking like a ghost. And they want this for me because they care about me, and I think it also makes them feel less worried about themselves if this ever happened to them.
What I find hard to tell people is that the treatment for cancer is actually the best part, because you know people are watching and cancer won’t sneak up on you. And if anything goes wrong, you have an emergency number to call, a way to get on a list for someone to help you.
When treatment ends, you are on your own with your family doctor, and you hope like hell it is enough to keep everything at bay. But I’d love to know the answers to so many questions, like:
Is there a reason scar tissue can start hurting two years after surgery for no particular reason?
When should I worry if I have swollen lymph nodes in my neck?Right now I have a cold and a fever and so I’m chalking it up to that, but when do I need help? (As it turned out, I was brewing a serious infection which bought me a five-day stay in hospital, and two weeks of IV antibiotics at home.)
Why is there so little understanding and warning for patients to warn us about the need for extensive psychological recovery with cancer?
Why is the medical system still treating patients as if their minds and bodies are separate entities?
What is the chance that something was missed in my most recent mammogram because of all the scar tissue?
How can I rid myself of the fear of recurrence?
I find myself feeling guilty because I’m unable to work currently, even though I know I’m not well enough. I know that my employers are likely experiencing some challenges without me in my position, I know that even though it shouldn’t legally be this way, I worry my job could be in jeopardy one day if someone decides I’m out of time. The worry affects my sleep and mood.
So yes, I know it’s been a while, I know I “should” be all better, but cancer just doesn’t work like that.