I’ve been wondering what I would say to someone if they asked me what the worst part of having cancer is. I mean, I complain about everything related to my disease — nothing about it is pleasant. Ok, maybe the wonderful people I’ve met, but that’s about it.
I realize that it isn’t a specific thing or event that makes the cancer experience so bad for me. And of course I can only speak as an early-stager.
Let’s talk about chemo, for example. For me, chemo was not a walk in the park, but it was doable. I had some challenging side effects. Some days were better than others. There were times I felt so ill, I was not sure if I would survive the treatment. These chemicals are heavy on our bodies. For instance, I remember the terrible constipation that went on for weeks at a time because of Adriamycin – the worst constipation you can imagine. I wondered if I was going to lose my intestines. Eventually all this trial came to an end. But even after all this suffering, this is not the worst part of having cancer.
And what about radiation. Well, that wasn’t too bad compared to chemo. The most annoying thing was having to be at my hospital everyday for 21 consecutive days. The burns caused by the radiation were not pleasant but eventually the skin healed. I have to say though that, emotionally, radiation was worse for me than chemo. There was something about that machine shooting an invisible laser, and me not being able to move while being watched by an entire hospital staff staring coldly from behind a window that made me feel… subjugated. And yet, this is not the worst part of having cancer.
Let’s talk Tamoxifen. I know some patients have a better experience on this pill than others. I am not a happy camper when it comes to Tamoxifen, which I’ve been taking for almost 5 years now. My moods are all over the place. I experience pains everywhere. I often feel like an old lady. My intimacy is suffering a lot. I have to continually check my uterus to make sure the pill isn’t causing a secondary cancer. I am unable to build a family while I am taking this medication. At times — every day, really — I want to stop taking it, but I am afraid to. I know that eventually this treatment will come to an end. Perhaps this is why being on Tamoxifen is not the worst part about having cancer.
And it isn’t even the follow-up appointments and the anxiety I experience a lot of times in my life due to my diagnosis. And it’s not the relationships I’ve lost due to the different life I now live.
So what’s the worst part about having cancer?
For me, the worst part of having cancer is the fact that no matter how many treatments I’ve completed and how many times I’ve had NED (no evidence of disease) results, I am never really done with it. I always feel like cancer is watching me. Forever.
I’ve experienced some bad things in my life before. I believe I’ve overcame those things. When I think of those experiences today, I look back and say “damn, that was painful! But I am glad it’s over now”. I can’t say that with cancer though. True, it’s a great feeling not having to do those heavy treatments anymore, but the ghost that is cancer never leaves my life completely. I have to involve cancer in every decision I make. And because of this, every decision feels heavy, making my life more complicated to live.
Although I am done with chemo and radiation, I still need to be on a pill to help keep my cancer at bay. And after I am done with Tamoxifen, there’s another pill I may need to take. I will always need to be seen by an oncologist. Scans will never end for me. The fear that cancer will come back is always in the back of my head because there’s no cure for it, regardless of how early you ‘catch it’. No matter how many times I get good results at the doctor’s office, I am not completely done. And yes, I do embrace those moments when I receive good news about my health. Until the next time. And the next time.