Our Editor shares her thoughts on the challenges of aftercare, both for the patient and those who love them.
It’s tough to handle an illness when you are going through it. It’s sometimes just as tough to keep up with the aftercare once you’ve made it through the crisis. The emotional toll, the physical adjustments, the never ending doctor appointments, the financial strain – it’s all hard sometimes. For some of us, it’s hard most of the time. When I first got sick, I thought, “Okay, I have to get through this chemo and these surgeries and then I can get on with it.” That’s how I got through it, trying to keep my eyes on the forest and not just the trees. Although there were days when I could only focus on one tree at a time (actually, that was most days, but you get the idea).
Now, I try to not think about cancer any longer, but I am suffering side effects that make it harder to forget. Let me quantify this by saying, I am grateful to be here to talk about this, and I am aware that my issues are not as big as other people’s. In fact, I send love their way. However, my stuff is mine, and I have to deal with it every day. As much as I would like to be done with it, some things will always be different and I am still adjusting.
I recently made a new friend that had a similar yet different experience. As we told each other our stories, I was struck by the one thing that most of us can agree on – it just doesn’t seem real. It takes months, even years to process all of the emotional baggage that goes along with a life-threatening illness, especially one that you still have to manage.
I thought I would be done after the surgeries and back to looking like myself once my hair came back. Well, mostly I am. But I have gained weight, thanks to steroids during chemo and side effects from meds that hopefully keep the cancer from returning, among other things. What they are really doing is keeping me from losing weight, even with military precision workouts and rigid portion control. Some days I just want to hang a sign around my neck that says, “I don’t eat boxes of cookies. I look like this because of medication.” But that sign wouldn’t go with my outfits. 😆
Some days I look in the mirror and it’s just tough to see how much I have changed. The photos of myself from five years ago to today are remarkably different. I keep waiting to feel like myself again, but I am starting to get that it may never happen. And that starts the cycle of anger, frustration, and sadness all over again, unfortunately. My sweet SuperHubs always sees the positive side of things, bless his optimistic, sunny heart. He reminds me that my little body has been through so much, that it is strong and has endured even with constant blows that still keep coming. He tells me I am beautiful and kisses me like he did when we first met. That’s something, although it really speaks to the special, kind and wonderful man I married more than anything (he rocks).
I think ultimately, you just want to be yourself again, the self you were before you got sick. It is hard to accept that this won’t happen, although on my better days I think, it IS happening, it’s just different. My heart broke when I was talking to my new friend, when I saw how shocked and devastated she still was about her diagnosis, the horrible things she had to endure, the heartbreak and disappointment. It’s not just about the physical changes, or the emotional wreckage. It’s about the wonder of the people who didn’t show up for you, the people who are close to you who can’t handle you being sick so you have to be strong for them, the burden of taking care of other people’s feelings and psyches when you just want someone, for once, to take care of you. I wanted to change that for her, to make it better, but all I could do was listen.
Maybe that will help her, if someone who really understands what she is going through can just listen to her. I recently joined a support group for women with breast cancer. I’ve never been to a support group before, but I wanted to try it. I think when I was going through it, my support was my mother, since she was going through it, too. But now she’s gone, so I need the love and care of others who know how to help me with the surviving.
You may think that the person you love who was ill is fine now, just because they look fine, and maybe they are. Or maybe they are still dealing with it in a different way, every day, and they still need help. We have a dear friend who is diabetic, and when we are with him, I think about how I can help keep his numbers down. I try to plan meals without carbs, I make sure we get some exercise, and I ask if there is anything I can do. I can’t help it, I’m a caretaker, it’s how I roll. Everyone handles things differently, so while it may not be needed, he knows that I care and want to help him. That’s what matters.
So the message here is – the crisis may be over, but the wreckage may still need tending, particularly if it is now a lifelong affliction or concern. Be patient, wrap that person up with love, let them know you are there to help. Know that what they are wearing on the outside, may not match what’s on the inside. Especially if the sign doesn’t go with their outfit.