Surviving breast cancer involved everyone around me. This is what I learned in the process.
It’s been almost five years since I heard those life-changing words, “You’ve got breast cancer.” As I get ready to turn the page on what’s been a long and emotional journey, here are some things I’ve learned along the way that might have been helpful to know sooner.
I admit, before my own diagnosis, I never knew what to say to people who were going through cancer treatment. I remember struggling with it. Wanting to express my thoughts and say something to offer comfort, but trying to settle on the right time or the right words.
Now that I’ve been on the other side of the equation, I can’t decide which is best — the people who say nothing, or the people who say too much.
The silence can be terrible. Someone battling cancer is always thinking about it. Every minute. Of every day. Always. And it’s emotionally draining to try and move through a day as if nothing is bothering you. Faking normal. Feeling like a fraud somehow.
I remember growing bitter at times when those closest to me failed to acknowledge what I was going through. I usually blamed myself for not bringing it up often enough. Perhaps I should have complained a bit more, a bit louder. But I’ve never liked drawing attention to myself, so I usually waited until someone asked how I was doing—my own silence making the journey much lonelier than it had to be.
There were those people who knew exactly what to do or say. A short text — “thinking of you.” A quick hug. Even a plate of cookies left on my doorstep. The gestures were what meant so much, not the actual message or content. Somehow they understood when and how to acknowledge the elephant in the room. My hunch is that they’d been challenged by adversity themselves at some point.
Then there were the people who felt compelled to say too much. Almost as if they couldn’t help themselves. They may have asked a simple question about how I was feeling, allowing very little time for me to respond. Instead, they launched into a narrative about their own suspicious symptoms, or their own fears of cancer.
Everyone has a story and some are more inclined to share it in varying amounts of detail. I tried to see beyond how egocentric this could seem—they were most likely just nervous because they didn’t know what to say. But it wasn’t always easy. Especially when the timing was all off.
I recall feeling pretty overwhelmed one afternoon after a doctor’s appointment and a radiation treatment, when I got a call from someone who wanted to tell me about that her upcoming mammogram. She was anxious and wanted some assurances that it would be okay — which it was. But I was in no mood to be the cheerleader. When I told her about my own day, it didn’t register and she kept musing about how scary it is to get screened for cancer.
It is. Yes. But I already had cancer.
I was battling to keep it from spreading and couldn’t concern myself with someone else’s apprehension at that moment. Knowing this person pretty well, I was never going to get that message across, so I had to distance myself from that point forward. That’s something else you learn from cancer — who your real friends are.
Regardless of whether those around you say too much, too little, or nothing at all, it shouldn’t be interpreted as not caring. People express their feelings in various ways. I learned this early on after my diagnosis.
I have three kids — two girls and a boy. Girls being girls, they asked a thousand questions when I told them about my cancer. They’re older than their brother too, both in college. So, we had a lot of open dialogue. I worried about my son. He was entering his freshman year of high school and never said another word after I shared the news.
At I first I wondered whether he was that self-absorbed that it didn’t bother him. I never truly believed that, but proof to the contrary presented itself one afternoon when I was looking at the search history of our home computer. Even though he’d never asked a question of me or my husband, he sure had been Googling things like, “How bad is breast cancer? What’s an estrogen, progesterone positive tumor? Can people die from radiation treatment?”
And just like that I realized how heavily my situation was weighing on my little boy.
I eventually figured out a way to break through his silence. He needed to know I was going to be okay, and it was my job to communicate that, not his.
You need to get things off your chest, let a little air out of the balloon as I always say. It’s impossible to move through life carrying something as heavy as knowing cancer cells are growing inside your body without needing to talk about it. It feels good to unload some of that fear and angst onto someone you’re close to, someone who knows and supports you. I’m lucky to have people in my life that I trust with everything, and it helped that my best friend was unfortunately diagnosed with breast cancer a year before I was. She was my go-to, my rock, my “I couldn’t get through this without you” person.
But there are risks to putting everything out on the table. For starters, even though I felt blessed to have the support of someone who had already walked a similar journey, I never wanted to prioritize my feelings over hers. Although she held the answers to many of my questions about staging, testing, treatment and self-care, every cancer diagnosis is unique, and hers happened to be more aggressive than mine.
Sometimes I felt guilty for being afraid for what I was going through when she’d been through so much more. She never made me feel that way; it was all me. I tried not to compare, but it couldn’t be helped. I’ll always be grateful for how much she allowed me to lean on her — still do. I guess that’s what best friends are for.
But another risk of verbalizing every ache and pain, is that it can exacerbate the situation even further.
Expressing my anxiety often made me more anxious.
Talking about my fear could make me more afraid.
There’s no easy answer on how to strike the right balance here, but it’s important to understand that sometimes keeping things to yourself is a way of self-preservation, a means of protecting yourself from the reality of what you’re dealing with. I know that sounds a lot like denial, but in my experience, sometimes verbalizing my feelings pushed me further into despair.
I’ve received top-notch care throughout my cancer journey and I’m fortunate to have access to one of the best health care systems in the world. However, there are still limitations. And no one knows your body better than yourself. Over the last five years, I’ve learned to be my own advocate. To question the decisions being made for me and never just following the doctors’ orders unless I’ve done my own research.
This approach actually saved my life. Even though I see several doctors throughout the year, none of them detected the blood clots that were forming in my leg. Appointment after appointment, I complained about the ache in my calf and the swelling in my ankle, always pointing out that blood clots were the number one side effect of the medication I was taking. Still, no one suspected that could be the cause of my discomfort. It wasn’t until I checked myself into the emergency room that I was told a deep vein in my right leg was near 100% blocked, resulting in pulmonary embolism (i.e., blood clots that had traveled to my lungs).
If I hadn’t paid attention to what was happening in my body, I may not be here writing this piece. It’s natural to want to trust your doctors and do everything they say. But don’t do it blindly. They have plenty of experience reading test results, mapping data, and assessing symptoms that can help them draw conclusions and make recommendations about your care. But nothing is foolproof, and they only spend a fraction of time with you compared to the time you spend with yourself. Trust your own instincts and don’t be shy in advocating for yourself every step of the way.
Tap into it.
There’s a whole host of places to find answers to your questions. Treating cancer isn’t just about removing bad cells from your body and introducing chemicals into your system to make sure they don’t return. First and foremost, it’s about making decisions. The ones that are best for you. Not everyone opts for the same surgery, reconstruction, chemo, radiation and/or medication. Treatment protocols are as individual as patients, and even two people presenting nearly identical situations can select entirely different paths.
For instance, I interviewed three different breast surgeons before I decided on the one I ultimately used. One of them told me her philosophy didn’t involve performing prophylactic surgeries. In other words, if cancer was only found in one breast, she wouldn’t recommend having them both removed. We all know plenty of surgeons don’t share that philosophy as preventive mastectomies are performed all the time. Another surgeon I met jumped right to the conclusion that I wanted a double mastectomy and her focus immediately became the reconstruction. “How big do you want your breasts to be when they’re done?” she asked.
You’re the only one who can determine whose beliefs best align with yours. But how do you know what to believe in the first place? Especially if you only talk with one doctor and you decide to follow his/her advice without question.
I know it can be exhausting, but I recommend taking advantage of as many available resources as possible. There are plenty of nonprofit organizations out there to help educate on different cancers and treatments. I connected with one in my town and joined a support group, not only to learn from experts in the field, but also to meet others who were going through the same things I was, at the same time. They had nutritionists on staff to answer questions about what to eat and what not to eat during and after treatment, massage therapists, Reiki specialists, art therapists, and social workers. All are at your disposal to address any and all concerns.
If you’d rather gather information in the comfort of your own home, there are social media groups you can join to chat with other cancer patients and survivors, and other organizations that provide various programs over the phone or the internet. I belong to a Facebook support group for people taking the same medication that I am. It’s been a great place to get tips about managing side effects, and I love that they have a “positive vibes only” rule about posting. No one needs negativity while they’re battling cancer. We need to lift each other up.
Carpe Diem. Seize the Day. Gather ye rosebuds. Or in the words of my favorite country singer Tim McGraw, “Live like you were dying.”
No essay on lessons learned from cancer would be complete without a mention of how your perspective on life will never be the same moving forward. I’ve made several positive changes in my life over the last five years. I’ve learned to be more present — for myself and others around me.
I’d never say getting cancer was a blessing, but it sure taught me how to live life to the fullest and to never take anything for granted.
Thanks to my annual mammogram, my treatment was far less aggressive than it could have been. My surgeon said that I wouldn’t have felt the lump in my left breast for a very long time based on where it was positioned, and early detection is the key to surviving any type of cancer. So if you take one thing away from this piece, make it be that.