There is no history of breast cancer in my family. I thought this would protect me. I would barely remember to book a yearly routine mammogram screening. I wasn’t anymore fastidious about booking a diagnostic mammogram every six months. When I was told there were three-millimeter cysts in my breast, it didn’t add up to much in my head. My family doctor phoned me within an hour of my mammogram to inform me I needed an urgent biopsy, but I thought, “It still could be benign.” It’s good to be optimistic.
The night before my appointment to receive my biopsy results, I had briefly looked up breast cancer on the Alberta Cancer Foundation website. On the off chance that it was cancer, I wanted to be able to ask informed questions about the next steps to take. But when the time came, I was still unprepared. The news hit me like a ton of bricks.
An unfamiliar doctor delivered the news to me. She said I should be prepared for surgery, chemo and possibly radiation. The doctor was proactive though: ‘I have already sent your chart to the Clinical Breast Health department. You will get a call from them to organize next steps,” she told me.
What made me really appreciate her was that she seemed to understand one of the most challenging parts of having cancer – learning to wait. Having the staff immediately fax my referral over to Clinical Breast Health before I even knew I had cancer spoke volumes to me. Her actions said, “We’re in control here, I know what to do and will act quickly to minimize your wait.”
What’s so tough about waiting when you have cancer?
Waiting during the cancer journey is easier when you feel like you have a degree of control. Receiving chemotherapy or radiation, adhering to the treatment schedule, even if it makes you sick, gives you that sense of control. You are actively fighting the cancer. The burden of waiting is lessened if you receive comprehensive information from your doctor about healthy lifestyle choices. Then, consciously choosing to live out that lifestyle – exercising and eating more fruits and vegetables – makes you feel in control, as if your choices might stop tumour growth or recurrence.
The hardest waiting you have to do after a cancer diagnosis is the period between the diagnosis and receiving a treatment plan. You already know you have cancer, so it’s easy to imagine it spreading throughout your body, but you do not yet know how you are going to get rid of it. I remember being afraid to move my arm. I knew that lymph fluid moves around when the muscles move, so I was afraid that it would cause cancer cells to spread around my body via my lymph system.
My cancer was diagnosed in late May and treatment started in mid-June or July. This coincided with oncologist holidays in an area already short on oncologists. A nurse was trying to find an appointment for me but having difficulty. Her communication was vague and she didn’t seem to be following a standard process. She had looked at two clinics but not a third for an appointment for me. Those were two very difficult days. The nurse said, “I don’t know when I can get you in.” My mind imagined receiving an appointment date, months later, in December; I thought it would be too late by then. When I asked when she would call me back, she didn’t have an answer. She informed me that her desk was full of charts of people just like me who needed appointments. I did not care. My own health and its uncertain future was all I could focus on.
If the ground beneath you keeps shifting, you need concrete answers. I would have appreciated that from this nurse— the reassurance she would call me back to give an update. As it was, I had to work very hard to believe in “the system” and in the work ethic of a nurse I had never met in person. I told myself positive things. Maybe by this time next week, I would have an appointment.
Two things minimized the impact of waiting for me: simplification and distraction. My memory became very poor with the stress of waiting. I lost my phone, keys and wallet multiple times a day, so I started carrying a fanny pack with just my keys, phone and wallet in it. We also simplified our meals, and bought things like prepared salad kits and entrees from the grocery store. A very good friend phoned frequently and, for distraction, we would go on simple outings to greenhouses and to a nearby lake for walks on the nature trails.
Waiting for healing was also difficult. My surgical wound needed eight weeks to heal before I could begin radiation treatment. To me, resting was time wasted in my battle against cancer, yet there was nothing else I could do speed up the process. Besides, the fatigue I felt made sure I was resting enough. During this time I participated in an online Art Therapy Chat Group. The assigned activities were simple and specifically designed to provide wonderful diversions to fill waiting time.
Hopefully, this will help caregivers, family and friends understand “what the big deal is” for those on the cancer journey. I hope I’ve enabled you to disarm some of the power that waiting has over us.