Being diagnosed with cancer introduces the need for a variety of new skills.
By: Alyssa Burkus Rolf
Being diagnosed with cancer introduces the need for a variety of new skills. You learn new medical terms to better understand conversations with your doctor or when reading medical reports. You develop new coping skills, both to manage new emotions and anxiety levels, as well as help others through their own struggles with your news. And patience. Lots and lots of patience. There is an inordinate amount of waiting that comes with a cancer diagnosis. It’s not unique to cancer of course, but when waiting is attached to the word “cancer”, there seems to be an added fear factor that increases anxiety levels significantly.
We waited many months for a final conclusion on the specific type of lymphoma I had. Each type of lymphoma has different treatment options, risks and potential outcomes, so the prolonged wait for a precise diagnosis left us suspended in time, worrying about my fate. We found ourselves hoping for certain types, (ironic, isn’t it, to be “hoping” for a certain kind of cancer?) and analyzing the potential implications of being in one patient group or another. We were referred to a local hematologist, but our concern about lack of specific answers regarding my diagnosis left us wanting a second opinion. Months later, we waited almost five hours on clinic day for a ten minute appointment at a major cancer centre, and didn’t ask many questions because we were overwhelmed and exhausted from waiting and worrying. It took a third opinion to have confirmation of my diagnosis, and I was told I had follicular lymphoma (fNHL), a slow growing form with treatment options but no known cure. The third doctor agreed with the second opinion, and left no doubt in our minds that this was an accurate diagnosis.
The recommended initial course of action was “watch and wait”, which involves only monitoring on an ongoing basis. We struggled with this recommendation, and it became the basis of much discussion and debate. The notion of not proceeding with active treatment was completely counter-intuitive to us. Up until now, everything we had heard about cancer was based on the idea that early detection provided the best possible outcomes. How could we simply sit back and wait? Do nothing? When you have cancer?
Explaining this idea to friends and family was even harder. Some jumped to scary conclusions at first, asking whether no treatment meant I was out of options and considered terminal, a word I have since come to loathe and avoid using. While I tell newly diagnosed patients to try thinking about a reprieve from any immediate, toxic treatment as a blessing, I was not able to live this way myself at the time. I was simply waiting for the other shoe to drop. I was convinced it would not be long before I would need chemo, and I simply waited for it to happen. It wasn’t watch and wait, it was “do nothing, and wait for what’s next”.
But sometimes, doing nothing is exactly what we need. In the months while we watched and waited, I learned everything I could about lymphoma and the treatment options that would be presented to me at some point. I found connections to other lymphoma patients, learned about their experiences, heard their stories. Watch and wait bought time to wrap our heads around the complexities of the disease.
I’ve tried to learn from this watchful waiting experience that taking time to step back and reflect can be critical to processing the major changes that can happen in our lives, often without warning. It isn’t always possible, and you might only have hours or days to make decisions instead of the months that I had, but trying to find a place where you can quiet your mind, and wait for the right answers to unfold can make it easier to manage the outcomes. It’s easy to be caught up in the what if scenarios, and there are always times when we need to move quickly, but if given an option, taking time to stop and pause, can give you the space you need to know the right answer when you hear it.
Ultimately, I had only seven months of waiting before I had to begin chemo and by the end, I was wishing we could wait longer. Such is the life of a cancer patient – even your choices to “do nothing” might not be your own for very long, and you never know how long you’ll have to be willing and ready to wait.