A dragged-down heart, similar in feeling to when I was hospitalised after my first chemotherapy session, was the best expression I could find to cover the loss of conversations with my mother about our favourite authors, books and theories. In the year I cared for her full time our conversations had no time for meandering through texts or our shared past stories. The ever present scorched our lives so fiercely; I was holding onto the hours with sharpened nails, and what required attention: medical, emotional and legal.
I can’t get Herceptin the miracle drug, Mum said after ending the call with her oncologist – the one whose nameplate sat next to my future oncologist’s in Wesley Hospital private rooms.
Why not?
It’s only for a particular kind of cancer. Mum sighed, and then shrugged her shoulders, keeping her eyes to the front. The positive side of that is Herceptin treats a more aggressive cancer, which I haven’t got.
This was the cancer waiting for me four years later.
That’s good. You don’t want an aggressive cancer, I replied without thinking.
No, it’s just I was kind of hoping to get the drug as it works really well at keeping it away. Mum scrunched her nose up and looked over at me.
Some cost for having a nasty C. Better to keep the one you’ve got.
I didn’t know what Mum was talking about at the time. The name of the HER2 protein didn’t register, only the drug, Herceptin. I received Herceptin with each chemotherapy dose and continued to get IV shots of it every three weeks for eight months post-chemo. It didn’t make me ill like chemo, and this alone would have been a real positive for Mum – something she would have considered if she had been HER2 positive, like me.
I held such different views of Mum’s decisions and thinking around cancer care after I was diagnosed. What I thought were clear-eyed opinions weren’t. I believe now that fear informed her choices more than an understanding of the reality of cancer in her breast and the medical intervention required to eradicate it from her body. Maybe Mum’s initial rejection of chemotherapy drugs but acceptance of Herceptin as an option was another way of skirting around the edges of conventional medicine. She was comfortable using medicine’s well-researched drugs without the terror of chemo’s side effects: a half-in, half-out strategy. After my own diagnosis and reading up on my particular kind of breast cancer I had to acknowledge that my mother would have been profoundly disappointed after hearing her HER2 status was negative.
Sentinel node biopsies were in their infancy in 1996, so she didn’t have that option; only the full removal of lymph nodes under her arm and radiotherapy were offered, which would have likely left her with lymphedema (build-up of lymph fluid that would lead to swelling in the arms), so she’d had a lumpectomy only. The treating doctor suggested radiotherapy on top of surgery, but my mother refused it on the grounds that it hardened the breast tissue and could compromise healing, plus if it returned in that breast after radiotherapy a mastectomy would likely be the only option instead of another lumpectomy. She took the other route. The one that failed her. I only understood the degree to which she hung onto the chance of new cancer treatments in light of my now-lived experience.
By the third round of my chemo I had more of an idea of how to handle the anti-emetics and get through the nausea. It took approximately three to four hours to deliver my chemotherapy so the oncology nurses offered me a bed to lie down upon, usually near large windows that had metal shutters sandwiched between their panes of glass to make them dust free, and a warm blanket for my shrinking body.
By this stage in my treatment some form of scattered rhythm had formed: after the first week of ill health and extreme side effects from chemo, a glimmer of normality would return for the remaining two weeks. In these weeks, I cared full time for my son without assistance, and my health returned in a way I recognised wasn’t full health, but a functional health where I ran my life without a fogged brain and nausea weighing my movements to a snail’s pace.
Supine on my white bed I looked around and took in everyone plugged into their chemicals. It was a plain hospital room but held so much concentrated humanity. The atmosphere of many nurses, caring family members and visiting doctors in plain clothes made the feeling of being cared for sharper for me. The room was awash with cancer patients but we were safer from the disease than at any other time since diagnosis.
A corridor away a nameless, faceless chemist read our vital statistics and mixed a chemo-intoxicant tailored to us. Each of us sat with the slow drip of hope that what we were going through would cure us.
Plugged into my chemical infusion I heard soulful music by Joni Mitchell playing on another patient’s CD player. The patient was Mum’s age. I heard my mother talking again.
I spent most of my science degree in my room painting, Mum would say when we wandered into conversation about the life she had before me. As a post–World War II English baby Mum benefitted from a free and supported education – a saviour for bright working-class people.
I wasn’t allowed to study some of the harder sciences as a woman, said Mum. So I did biology, zoology and botany … the stupid things women had to fight to do. In 1960s Sheffield women in chemistry laboratories had to wear stockings and a skirt. I addressed the union, got a petition going and was then granted permission to enter the classroom wearing protective slacks like the men. The noxious fumes melted our nylon stockings off anyway.
I really missed my mother that day – and any day I remembered her feisty nature and her campaigns for women’s rights. She
