Longer-term cancer survivor shares strategies to cope with the appointments, tests, and results that always seem to be looming on the horizon.
Waiting is the hard part. Information helps reduce fear of the unknown and allows a newly diagnosed patient with cancer to move forward to treat their cancer and live their life. Still, it is hard to wait for the next appointment, the next test and especially the next test results on the horizon.
We live in the era of the Internet. For cancer survivors, it has changed our expectations, how we think and how we problem-solve. We have the instant gratification of a lot of information right at our fingertips in many cases, but not always for our own cancer battle.
When or if I get another cancer diagnosis, this is what I want to know right away: specific type of cancer; for example, more specific than "melanoma" for me was "lentigo melanoma." I also wanted to know my cancer's stage, grade and treatment plan. Armed with this information, there was less fear and panic. Armed with this information, a newly diagnosed patient with cancer can educate themselves about their disease and do their own research. A patient with cancer can understand what may be on the horizon.
No one wants to spend time waiting for a phone call, an online message or an appointment that they already suspect may deliver bad news. We each have our own preferences on how we wish to receive cancer news. We want to understand our cancer diagnosis both thoroughly and quickly.
Nine years ago, I had breast cancer and five years ago I had an unrelated melanoma. Last year I learned I have the PALB2 genetic mutation. They had not yet discovered that mutation as it relates to breast cancer at the time I received my diagnosis. Nine years ago, they tested for two mutations; this time, I think they tested for 19 mutations! My PALB2 mutation discovery resulted in a recent double mastectomy with reconstruction for me. It also resulted in a referral from my oncologist for an appointment on my calendar to meet with another oncologist who specializes in genetic cancers to learn if/what other cancers I should be screened for and what treatments I should consider because of the genetic mutation and my family history. Once again, I wait and watch the horizon.
Ironically, I also have an appointment with the pulmonologist for the results of my recent second sleep study. Leaping ahead to try to research my symptoms (not always a great idea), I have learned my sleep symptoms could either be innocuous or dire. Ugh. Too much information too soon? It is probably not cancer-related, though it is definitely health related. Not everything that goes wrong with our bodies is cancer. There are other illnesses out there too. This is something patients with cancer sometimes forget. Be careful out there. There are many things that can pop up on the horizon.
It is helpful for me to get the appointments scheduled on my calendar. Though they are "out on the horizon," I can know that I have been as responsible as I can be about my medical care and then I can get on with living the rest of my life in the present moment. That is important — living in the present.
I also remind myself that I am still here. I am fortunate to be here to wait for those appointments and test results. So once again, I am grateful for life and waiting is still the hard part.
To cope with the waiting, cancer survivors can learn what personally works best for them. When I work to cope with the waiting, there is less spillover and sideways stuff that comes out at the people around me. Here are some of my thoughts:
Dealing with cancer is not easy. It is hard to have something always looming on the horizon and it is possible to learn to cope with this new reality. We can hold hands and walk toward the horizon together and sometimes even enjoy the walk. And yep — I will report back on how my next appointments go.