So, not everyone has survived brain surgery, twice, and battled brain cancer, twice. I fully recognize that. Living with cancer and the trauma of it all has brought me an invaluable perspective on life. I know that people cannot truly understand my experience without having personally faced cancer, or any life-threatening illness really. Even among cancer survivors, each and every one of us has our own story and struggle.
With all that being said, I was not prepared for the vast array of reactions to my diagnosis. I was told that people would surprise me in the most unspeakable, incredible ways, and others would surprise me in the worst ways. Truer words have never been spoken.
After learning I had been diagnosed with cancer, the majority of people said, “I just don’t know what to say.” Honestly, that’s all you need to say. There are really no “right” words. There may be a lot of wrong ones (I’ll get to that), but I found that as long as the love and concern was there, that was all that mattered.
The day before my surgery, I received a framed photo of a group of my friends, taken while we were in the Caribbean just months before, ironically celebrating my 34th birthday. As my friend handed me the frame, all she said was, “We love you.” It meant everything.
Following my surgery, one of first the gestures that struck me was the onslaught of food people brought over and sent to our apartment. It was amazing! I never imagined that such a simple thing would mean so much. By the way, I highly recommend chocolate. Chocolate helps everything. And while I couldn’t personally enjoy a glass of wine while recovering from surgery, my God, would I have loved a few bottles sent my way! Wine also helps everything.
Coming from a strong, Irish Catholic family, and having married into one, I received an incredible amount of prayer cards. I would not consider myself a particularly religious person in the conventional sense, but every prayer card and mass touched me deeply. I do truly believe all of the prayers helped in my recovery. Even if you don’t believe in God, or a higher power, I feel there is a powerful energy created by all of the good vibes/thoughts/rain dances people send your way.
I do not have any immediate family in this country, aside from my parents. Recognizing that, my husband’s family stepped in and scheduled among themselves what days they would each care for me in the weeks after my surgery. Not having to ask them for help meant the world.
Soon after my diagnosis, one of my closest friends dedicated a race to me, posting that I was an inspiration to her. Throughout our friendship, I always saw her as the strong one. Now, I was serving as her inspiration and strength.
These are only a handful of the incredible ways people responded to my diagnosis. Yet, there were many hurtful and painful surprises along the way too.
A week or two into my radiation treatment, and just about six weeks after surgery, a particular person asked how I was. I did not want to have a long conversation on just how badly I was feeling, so I breezed over exactly how I was doing. When I asked how she was doing, she started out by saying, “Uh, I’ve had the worst week of my life.” She proceeded to tell me the most mundane, ridiculous story about a series of meaningless events that happened throughout her week work. It was one of the most insensitive things anyone has said to me throughout this entire experience.***
During one of my particularly hard weeks, I mentioned to that same person that I was experiencing some very bad anxiety. Her exact words were, “What do you have anxiety for?” It seemed unbelievable to me that she actually couldn’t conceptualize how this experience could cause me anxiety. I reacted in a very snarky way, and not even recognizing my obvious sarcasm, she then proceeded to tell me what I needed to do to help my anxiety. It was not advice I wanted, nor needed.***
***And before you think, “Who is this person?, I will just say it is a person, who should have known better, but who I dearly love and care for.***
People just want to seem like everything is normal, so they tend to act like everything is normal. The problem is – being diagnosed with cancer in your early 30s is NOT normal. None of us want to be treated differently simply because of cancer. Yet, that term “perspective” constantly crosses my mind. Suggestion #1: Do not talk about your stray grey hair, as my hair is literally falling out in clumps due to radiation to my brain. Suggestion #2: Do not tell me that as soon as I recover from brain surgery, I can start thinking about having babies. Suggestion #3: Do not compare breaking your leg to my brain surgery and brain cancer – I’m sorry, but they are not the same.
“Don’t worry.” I have been told this more times than I care to think about. I do know that it comes from a good place, and that when people tell me this, they just want me to be okay. They don’t mean to place added stress on me, or make me feel like I have to be strong for them. I do just wish more people would instead say, “I understand. It’s scary. This absolutely sucks.” They could acknowledge how serious my diagnosis truly is and use multiple expletives, like I tend to do. When people tell me, “Don’t worry” I feel that it discounts or minimizes the legitimate fear I have about this possibly ending my life.
Another comment I’ve struggled with is, “You look so good!” I admittedly do not look like the “typical” cancer patient we see all over television and film. You know, the bald head, sunken eyes, grey skin and skeletal frame. I look just like everyone else, minus the bald spot and enormous scar on the top of my head. That may be what scares people though. I feel that when someone looks at me knowing I have/had cancer, while seeming so healthy and normal, it makes them fear that cancer can happen to anyone. It could even happen to them. In some ways, I think people would be more comfortable facing my diagnosis if I fit into that characteristic cancer patient aesthetic/chic.
Despite some of the more hurtful reactions, I have come to be extremely patient and empathetic towards other people’s struggles. The title of Robin Roberts book Everybody’s Got Something sums up that notion well. Everyone has their own pain, heartache, longing, fear. Again, we each have our own story and struggle.
No one is prepared for cancer. There is no handbook to direct us on how to react, whether you’re the person facing the diagnosis or you’re the loved one of that person.
One of the most poignant moments in discussing my diagnosis was when I expressed my worries about a recurrence with my oncologist. She looked me in the eye and said, “We will deal with that if it happens. Then, we will make a plan for what our next steps will be. For now, just live your life.”
So, every single day I come back to those words: “Just live your life.” No matter what the day will bring, or what the day has brought, this is my mantra. Cancer has brought some terrible things into my life. Yet, it has given me this new, beautiful, profound perspective on life, and that is something I will cherish forever.
