What I Wish I'd Known When I Was Diagnosed With Cancer
The oncologist doesn't have to be your friend. Maybe you wouldn't have liked him/her in the life you used to lead, the one where where cancer happened to other people. She does have to be "present" during appointments and able to talk about options and answer questions. With so many patients these days (I'm repeatedly saddened by the number of new patient faces I see during my stint with treatment, which is coming up on two years), oncologists have great demands on their time and I make it a point to ...
Write down questions and concerns every single time. I am really, really (really) bad about this. But I have learned that I can write down my questions and email them to the nurse ahead of my appointments. That way, the doctor sees what's bothering me and has time to consider all aspects and possibilities. And, since I always worry about being a pest during appointments, this method makes communicating straightforward.
You're going to feel alone. Nothing, and I mean nothing, prepared me for the fact that I am on my own, even in a room with other cancer patients. When I try to express this deep solitude to my husband of 20 years, I can feel alone and misunderstood. The key for me has been to accept this as a solitary experience in my life. My friends and family and strangers who offer support and love walk alongside me, but cancer calls on a willingness to find personal strength.
Cancer is an emotional roller coaster. On the negative side, there's fear, sadness, confusion but those are powerfully offset by love and hope. The ups and downs are a source of emotional stress that can be difficult to handle, whether or not you are surrounded by loved ones.
Cancer is not one-size-fits-all. After being diagnosed with breast cancer, it took some weeks for the final diagnosis of metastasis to be delivered. Because I was considered young for breast cancer (age 50 at diagnosis), so many people told me that I would be over this in no time and that "six months from now" I'd be celebrating. Breast cancer has many variations; find out what type you have and ask about what it means.
You won't always be tired. Treatment includes chemotherapy, surgery, radiation, tests, various doctor appointments and blood work. If you thought you were tired before, get ready. The good news, though, is that even during chemotherapy, many patients have beautiful, busy days. You will quickly learn how the drugs or other treatments affect you and will be able to plan to make the most of your life.
You will be one among many. Once I was over the shock of my diagnosis and was on a tour of the chemotherapy treatment area at the hospital, I was surprised that patients were treated in the open. There weren't individual rooms for everyone (there are exceptions of course) and I wondered at that. I know how I felt about being told I have cancer, but here were 30 patients being treated as though this was an everyday, tolerable situation. Sometimes that lack of privacy is difficult, but mostly it is for the best.
Decisions about your treatment come down to you. The days when everyone automatically did what the doctor ordered are gone. For this reason, it's good to have a couple pairs of eyes looking online and/or attending appointments with you. This can give you power because this situation can be scary for anyone not in the medical field.
Life goes on for everyone, including you. Despite the odd, “life-has-stopped” silence that filled my heart when I heard the word "metastatic,” life has a way of grabbing hold for most of us. It is easy to hide or limit activities and friendships, but try to grab life right back and do something that brings you joy.
It's scary to stop any treatment. Who would guess that even with radiation pain and the major hassle of getting to the hospital every day for six weeks, I'd wonder if I should actually be having more treatment. My friends who've been told they are "done" with chemotherapy tell me they experience the same feelings. That fear of not having done enough coexists with the urge that so many of us have to deny cancer. Don't let those emotions stop you from doing what's best for your health.
Your friends will come through (most of the time). Not everyone knows what to say to a cancer patient, whether newly diagnosed or facing recurrence, because every patient is different. Sometimes a patient wants to talk, sometimes she doesn't. The good news is that most friends and acquaintances want to be there for you. Let them.
Everyone has a cancer story. And a lot of them you won't want to hear. Be ready for it.