I originally published this story on my blog and it is deeply personal. My sister and mother both had breast cancer, which took their lives, but not their spirits. They lived with hope and spunk and were an inspiration to me. My sister, photographed above, celebrated her birthday when she lived with breast cancer. She traveled. She went to plays until COVID took that away. I was their caregiver, although with my mother, I had a lot of help from PSWs who were angels.
Although this is sad, it isn’t everyone’s story. Even since my sister died in December of 2020, there have been advances in breast cancer research. This month is not only a dedication to the patients with breast cancer, it is dedicated to their families and caregivers too. I want other caregivers to know that they are not alone. I get it. Even though the story doesn’t have a happy ending, if you knew them, you would know that they were always filled with hope.
I remember the words like they were yesterday. I was sitting in the emergency room at North York General Hospital with my sister. She was angry with me for making her go. Her arm was swollen and she showed me, so I immediately said that we needed to get it checked out. She sat down with me after speaking with the triage nurse. I said, “So, do they have an idea of what it is?” I naively thought that the universe wouldn’t be cruel enough to give my sister a major illness. She looked at me, and said matter of factly, “I have breast cancer.”
I felt like I had been punched in the stomach. I immediately denied it, saying “That’s not true.” I realized, in horror, that it was. I remembering sobbing. I was unable to contain the grief I felt. It was the worst news possible, my mother was also dying of breast cancer. I didn’t know what to do with myself. I couldn’t stop crying, and my sister needed my support.
“How long?” I asked. She knew what I meant.
“I’ve known for a while. A few months maybe.”
“And you didn’t tell me or go to a doctor.”
“No,” she whispered.
“Is it because you were scared?”
She nodded unable to speak.
“I’m scared too, Michele, so scared. But I’m here, and I’m not going to go anywhere. We can’t tell Mummy until we know everything.”
She nodded in agreement. I proceeded to cry some more, still not able to control myself. I literally cried for hours. Michele was shocked at how broken I was over this. Although we all had our moments, I usually saved my tears for sad movies, or for my worry over my mother’s illness. Never in front of my mother of course, I only let her see me smile, or the odd time, at a doctor’s appointment, see my worry, although I learned to control that too and focused on being her advocate.
I was her primary caregiver – although I had help with the day to day with the most wonderful “ladies”, I went to all of the medical appointments. I ran my mother’s errands. I handled her finances (mostly just doing the legwork – her mind was a steel trap). I stayed with her for hours in the hospital. But, I just couldn’t wrap my head around this moment.
I couldn’t face the thought of losing my mother, but as sad as that made me, my sister’s illness devastated me. Losing your parents, although hard to bear, is natural. Your siblings are supposed to be there for you in your old age. In those moments, my unassuming sister finally realized how important she was to me. I realized that life would never be the same. Michele said, “It’s tragic.” I couldn’t speak, the lump in my throat was so large, so I just nodded. There was a lot of nodding.
As the clock struck midnight, the day gave way to October 19th. About an hour into the new day, Michele was finally called in to be seen. She looked at me, and said, “You aren’t coming in yet.” So, like a child, I stood outside of the exam room, mindfully doing what I was told. I knew that my sister was angry with me. She was angry because I was making her face the truth. She could no longer deny that she had breast cancer. I was shaking, because I knew that the ER doctor was going to confirm our worst fear. I heard him say to my sister, “You know that the news isn’t good, don’t you?” She simply said, “Yes.”
As he walked out of the exam room, he looked at me, and said, “You made her come in?” I said yes. He then said, “You did a good thing.” In that moment, I didn’t think so. It felt like Pandora’s box was opening, and the truth was too much to bear. I went into my sister’s room, and we looked at each other.
She said, “I’m going to fight.”
I said, “I’ll be there for you, every step of the way.”
And then, I broke down again, not realizing that there could be any tears left, and said, “Oh my god, how can we do this to Mummy?”
My mother had been through so much, and finally had a bit more energy. She was bedridden, but brave, and funny and herself. I adored my mother. Admired her. My sister did too, but as she always said, I was a suck up when it came to my mother. I was “the baby”, like it explained everything. No matter how old I was, my mother still introduced me to her friends as, “And this is the baby.” I’d smirk and Michele would roll her eyes….but….
I was the one that my mother relied on the most, particularly with her health. I could deal with doctors. I took the time to learn every facet of her illness. I fought for her. I was her voice when she was too tired to speak. I wouldn’t let the medical system write her off. Caregiving and advocating for my mother was the greatest thing that I thought I would ever do.
I read my mother’s charts, eliminating the scary information that no one wanted to hear. The doctors glossed over the facts with her, not delving too deeply. When I read her charts – growing up and hearing medical terminology my whole life helped – I knew how bad it was. She would ask, of course, what the charts said, so I would read her portions – only those portions that gave her the information that the doctor’s gave – my mother knew all of the same terminology that I did and more, having worked in my father’s office for so many years.
I was always so careful not to mention how broken her body was, because I didn’t want to break her spirit too. My sisters told me that they didn’t want to know what I knew. What could I do? I had to keep it to myself. I knew that I would have to do the same for my sister. There would come a time when I alone would know the secrets that she didn’t want to hear about her illness.
We left the hospital with an appointment in hand with a surgical oncologist. It was around 2:30am. When we walked in the door, I bent over a chair and sobbed again. My sister tried to comfort me, but she was exhausted. We slept on the sofas together in the living room. She was afraid to be alone and I was afraid of what would happen if I couldn’t see her. I tossed around all night – too afraid to close my eyes. She slept mostly. She told me to go to work the next day. I was supposed to go to my mother’s, like I did almost every day. We agreed that I would go, and that I would hold it together.
I remember when I walked in, I put a big smile on my face before I saw my mother. She smiled, her big beautiful smile. I held her hand and she asked why I looked so tired.
“No reason Mummy, I just didn’t sleep well. Work was busy, the usual.”
“Dayo – my Dayo, you are doing too much. You need to take care of yourself.” (Dayo was her pet name for me).
“I’m good Mummy, don’t worry about me. Save your energy for you. I’m ok.”
Only I wasn’t. How could I be? But, if you have ever been a caregiver, you know that there are days that you will be. And days that you won’t. It all depends on the people that you are caring for and their test results. You begin to live your life in 3-month increments – from CT Scan to CT Scan. If the results are good – you feel elation. If the results are bad – then you feel despair only you can’t show it.
Then you leave the appointment, look at your loved one and say, “The test results don’t account for everything. You are still here. You’ve got this.” Inside, you know that’s not true, but outside, they need to believe you. So you walk with them or push them in the wheelchair and you give them a reason to believe what you are saying, whether you yourself believe it or not.
October is Breast Cancer Awareness Month. Get checked out so that nobody has to have a night and a day like October 19, 2017 and so many days and nights before and after that. And remember that behind the walks and the pink ribbons, that there are stories of real people living with breast cancer. One of those people was my mother, the other my sister. Their lives deserve to be remembered and so do the lives of so many others.