The Up’s and Down’s of Being Diagnosed During a Pandemic
Two weeks after my province closed schools due to COVID-19, I found a lump in my right breast. And so began my breast cancer journey, right in the middle of a global pandemic. Compared to what one might normally expect during the beginning of such a saga, my story looks quite different.
Right after saying, “Let me know if there is anything I/we can do to help”, friends and family would remark on how this was just the worst timing. As if cancer ever had good timing, but I got their point. In a world of physical distancing, it suddenly became much harder to determine how I was going to cope and how they could help, aside from perhaps food/groceries, and even that was now fraught with myriad potential pitfalls. Before COVID-19, I might have had help from friends as well as outside organizations with childcare, pet care, cleaning, face-to-face supports, accessories and supplies to look and feel better, but now there was a void. Friends were not able to come by and organizations, stores and classes were closed or on hold. Thank goodness for family, and especially my parents who had us move in with them and are helping my husband care for me and our little guy.
On the medical front, I met with the surgeon a week after my biopsy, when we knew I was estrogen and progresterone receptor positive, and was told there was no way I could get surgery right now – the ministry had shut down all elective and non-emergency surgeries. I failed to see how removing a cancerous tumour was either elective or not an emergency, but it was out of our hands and he did an admirable job trying to convince me that the delay would not result in my untimely demise. He planned to see me in four months and we’d reassess then. For better or worse, a week after that, I learned that I was HER-2 positive and the treatment protocol involved neo-adjuvant chemotherapy anyway, so suddenly the delay in surgery was just standard of care. I never expected to be relieved to need chemotherapy, just so I could receive the standard of care.
That said, although I started chemotherapy on April 30, my appointments are not quite standard. As no support people can come with me, my husband waits for hours in the car while I go to chemotherapy and other appointments alone. Most of my pre-chemo “visits” and all my scheduled follow-ups are over the phone and I’m not sure when I’m going to see my doctor face-to-face. I’m sure this will eventually occur, as someone needs to assess this tumour, but protocols are still in flux in this COVID-19 world. For example, due to the lack of in-person visits, I didn’t receive a complete chemotherapy teaching package, but it took multiple phone calls with different members of the care team for me to realize this and ask for it. It was no one’s fault, everything is just too new.
Despite the upheaval, there are some good things about receiving my diagnosis during this time. I was seen quickly, as all “non-essential” appointments had been cancelled. This allowed me to complete all my imaging and fertility preservation and to start chemotherapy within four weeks of my biopsy. Since most patients do not have support people with them for chemotherapy, I had a chance to chat with others and was really inspired by the woman in the chair beside me. I also had time to listen to music and focus on me, which was a nice change from running after a toddler.
Another benefit is that most of the public is being careful about infection control; it may be harder to catch something now than before. And with increased awareness of how COVID-19 can affect vulnerable populations especially, I don’t have to explain to friends why they can’t visit or why my son won’t attend playdates even when restrictions begin to loosen; they already understand.
Since no one has anywhere to go, I’m not experiencing much FOMO – no pictures of jet-setting friends on Instagram! No wishing I was out hiking, when no one else can do that either! Instead, friends have time to chat and check in; one group of us have set up a book club! And I’ve discovered there are ways to connect virtually with the cancer community and receive the support when I need it.
Most importantly, going through cancer treatment during a global pandemic has shown me that I am strong and am supported by a strong network of family, friends and supports. Do I wish it was different? Sometimes, yes. But it is what it is. It’s going to be a long, tough road and may not always be smooth. But we will get through this, all of us. – Lori Chen