Dear newly diagnosed cancer patient
Stepping into the box
Dear Newly Diagnosed Cancer Patient (I’ll call you A),
Not the news you were hoping for, right? I'm sure the last few days (or weeks) of additional scans, blood draws, and biopsies were filled with prayers and hopes for the all-clear, mixed with anxiety that "something" was malignant. I'm sorry that your prayers weren't answered this time. I really hope your cancer has been caught early and that you will have minimally disruptive treatment options.
Right now, I imagine you are sad, scared, angry, shocked, worried, maybe overwhelmed. This wasn't on your to-do list, and you expect everything in your life to change. Perhaps you are numb. You have one hundred questions, and you want answers about if your diagnosis is life-threatening and what your treatment options will be. Some immediately search Google for education, clinical trials, doctors, and support groups.
I know because I've been there. I received that fateful call from my doctor the day before I was supposed to have a bilateral prophylactic mastectomy. I received a call from my mother telling me my sister had cancer. I received a call from my father telling me my mother had cancer. I remember the call from my sister-in-law telling us she had cancer. Each of those conversations and the associated cornucopia of emotions unleashed remain at the forefront of my memory. Early-stage breast cancer has a 99% survival rate. After each of those calls, I quickly became certain that the diagnosis was unfortunate, unwelcome, and not life-threatening. Whatever it was, treatment would be something to endure for a time.
The narrative surrounding a cancer diagnosis is scary because cancer kills otherwise healthy people. A diagnosis opens the floodgates of medical appointments, scans, and tests that quickly overtake your life.
News stories, TV, books, and movies feature shaven heads, emaciated bodies, and tears. For some cancer patients, that is an authentic representation of their cancer experience, especially for late-stage cancers and recurrences. I was in the room with my parents when my mother's doctor apologetically told the three of us that mom's bladder cancer was back. That was a later-stage cancer, and the odds were a lot less favorable. We didn't know how that would turn out for years.
Cancer is one of life's big, ugly, unpredictable curveballs. Once you see that pitch, you will be in the "batter's box" until you are done with that cancer. The media story is that you will be weak, frightened, and out of control. That is one way to experience cancer. There's another - and it's the alternative path I took to transform the unwelcome cancer diagnosis into an opportunity to find laughter and joy every day, proactively and aggressively manage my care to minimize side effects to maximize my non-cancer time, reconnect and be uplifted by the love and support of people from every era of my life. My cancer treatment year was one of the best years of my life. I still wouldn't choose to get cancer, but if you are facing that curveball, I recommend my approach as a better way to live through it.
The first stage is the emotional reaction to the news - yours and your loved ones. The last few days/weeks have likely been full of uncertainty. I thought I was having major surgery and eliminating my breast cancer risk. Instead, the day before my surgery, I was told that my scans uncovered a tumor and I needed chemotherapy before surgery. I might have been less surprised than most breast cancer patients because I have a genetic mutation and a strong family history - but I was two steps before the finish line when I stumbled and lost the race. I was going to dodge this particular bullet. In addition to being sad, adrift, and annoyed, I was also furious with myself for waiting so long to do this surgery.
My recommendation to every newly diagnosed person is to let yourself feel the emotions - the feelings will NOT kill you. You can endure feeling shocked, sad, scared, mad, anxious, alone. I wrote my feelings into a private document to express them without worrying about how anyone else would react. My brain gets caught on auto-repeat in fear of forgetting something, but once I write it down, the auto-repeat stops. My subconscious seems confident that I will not forget what is written. It took 5-10 minutes and gave me space to feel without judgment. Anything you feel right now is precisely what you should feel. This is your experience, and you have yet to learn the shape of it.
Quickly following your personal emotions is your first decision - who do I want to tell immediately? You probably only know that it's cancer and what type. That's it! You don't know what stage. You don't know your treatment options. You probably don't know who your oncologist will be or when you will see them. So - tell the people who will give you the most support and tell them what you need. I told my sister (a survivor), my sister-in-law (a survivor who was staying with us to help with my now-postponed surgery), my best friend (who was already quarterbacking the food train for my now-postponed surgery), and my husband within the first hour of my diagnosis. I told them what I knew and that it was EVERYTHING I knew - that additional questions about the diagnosis weren't helpful. My parents and my children would be told later that day - but I wanted a few more answers before telling them.
OK - now you've cried, screamed, hugged, or done something with your feelings. A - you are NOT ALONE - you've started building your support team. I'm shouting at you because you may feel completely alone, and I want you to hear me. No one else will be enduring the treatment of your cancer physically, but you are not alone emotionally.
As I wasn’t having surgery, I told my parents why and what was happening. Mom is a survivor and they both endured my sister’s roller coaster ride twenty years prior. They were supportive and sad, but confident that I would get great care. I told my children with honesty, optimism and compassion. I have been one of them - I remember being told when I was 13 and 15 that my mom had cancer. It sucks the oxygen out of the room. You are scared for your parent and you are scared about what your parent’s cancer means for your life and your health. Then you feel guilty for thinking about yourself when your mother just told you she has cancer. It’s a mess of emotions. Luckily, I had processed enough of my reaction (the writing and first four really helped) to support them as they reacted.
More tomorrow - that’s enough for Day 1.
Hugs - J
What comes next?
