My inability to remember pain is mysterious to me—not that I’m complaining. I can remember emotional anguish but I struggle to remember physical anguish. My skin is now healed so that you would never know that it was burnt in the first place, and my memory isn’t about the pain of it so much conversations I had about the pain of it. I remember one walk through northern California when my skin was so painful that I said, “This is unbearable!” That things are “unbearable” is a common cancer experience of mine. Of course I could and did bear it, but the strength of the emotion stays with me even as my skin has turned from burgundy to fuchsia to pink to white, from the texture of flaking old leather to soft, new, beautifully ordinary skin.
While the pain has disappeared, though, I find myself almost unbearably tired (there’s that word again—of course I can bear it). The nurse who gave me my belly shot this week told me that in her experience, radiotherapy exhaustion lasts longer than chemotherapy exhaustion which was a rather depressing notion.
I am someone who generally gets quite a lot done. I have often liked to think of myself as having a lot of grit and determination, but it’s at times like these that I realize I also simply have a lot of energy. Or at least, usually I have a lot of energy. It makes me remember (as so many things do) that I often assign a kind of noble characteristic to something that’s simply a circumstantial gift. My capacity to get a lot done is not the strength of my character; it’s been the strength of my body. Right now my exhaustion isn’t the weakness of my character; it’s the weakness of my body.
This (re)discovery, like so many other parts of the cancer experience, brings me to a more and more compassionate place. It is so easy to impose my own reality on the life of another person, and to utterly miss their lived experience. Being physically exhausted all the time is hard, and it can leave me feeling emotionally exhausted, and more easily sad. Being in pain all the time made me cranky. When I next see a cranky person, I hope I’ll wonder whether she’s also in pain, and I hope I’ll have more compassion for the parts of her life I don’t understand.
“Cancer related fatigue” is the number one side effect of cancer—the doctors say everyone gets it. It’s tiring to have cancer, it’s tiring to treat cancer, and it’s even tiring to be around someone with cancer (it’s the one cancer side effect that is shared by the friends and family of the person with cancer). But this post-radiotherapy fatigue is a whole different level of tired. I am tired to my bones, tired from when I wake up in the morning until I go to bed at night.
What helps? The magic of my hyperbaric oxygen treatment (this is the most powerful thing). Meditating, particularly to music designed to increase the theta waves of my brain (I listen to this one at least once a day ). Being outside in nature and remembering how vast and beautiful the world is. Spending three hours with 130 leaders who are struggling with too much complexity in their lives and showing them a new way. Baking oatmeal cookies for Aidan and Michael. Writing. Laughing with friends. And the kicker is that most of those things—which give me so much energy—also make me tired.
Now, you can see why I haven’t blogged this week. And even though this blog doesn’t quite yet say what I want to say, I’ll close it and post it now. It’s not that I don’t care enough or that I lack determination and grit. It’s just that I’m too tired tonight to get it right.
–The picture today is dawn this morning over Brisbane where I’ve come to work hard and, hopefully, to rest, though the massive cyclone bearing down on northern Australia is a little concerning…