As the mother of a child with Down Syndrome, Sue Robins was no stranger to the challenges faced by patients and their families in terms of getting empathetic healthcare that addresses the mental and emotional needs. But when she was diagnosed with breast cancer at 48, Robins, an author and healthcare activist, was struck by the lack of compassion and humanity within the healthcare system that consistently affected her emotional recovery. So much so that she told her story in two books and a recently published photo essay called Twenty days of radiation.
Robins talked to Healthing.ca about surviving cancer, her experience as a patient, and the barriers that are getting in the way of compassionate care in Canada.
This interview has been edited for length and clarity.
What was it like to find out you had breast cancer?
I was 48 when I was diagnosed. I found a lump in my left breast, and fortunately, my family doctor listened to my concerns and ordered diagnostic tests. I thought I wasn’t at risk — there was no family history of the disease, and I had this idea in my head that I was immune to it. I breastfed my kids for a long time and I had read that this helps. But I’ve learned is that no one is immune — cancer does not discriminate.
Having cancer was a life-changing ordeal for me, and I have to say that I’m still grappling with it today. I am just monitoring myself to make sure the cancer doesn’t come back. One in three women end up with metastatic cancer so that’s always a worry that we carry around with us for the rest of our lives.
What was the scariest part about your diagnosis?
Waiting for the biopsy results was actually the worst part. I felt like I was living underneath this terrible, cold and clammy fear and I could think of nothing else. It took three months, but when I finally got the diagnosis, it was a relief.
What did you learn from the cancer experience?
I realized just how deeply cancer affected my family and how traumatizing it was for my partner who supported me every step of the way. Throughout treatment, I had been mostly thinking about myself, but this experience was really hard on my partner too. I’m very grateful for him because I know lots of women whose marriages have split up. I think that if you have a crack in your marriage, it can cause more cracks, but if you have a solid relationship, a cancer experience can bring you closer together.
You write in your books about the importance of mental health support for cancer patients.
Most people don’t get any mental health therapy when they go through cancer treatment, and I personally think that everybody needs emotional and mental support. Cancer opens up all of what you haven’t addressed or reconciled with in your life. I still see the same therapist today, and it’s been five years post-treatment. She is helping me grapple with the trauma and medical post-traumatic stress, as well as my own family stuff — but I don’t feel I’ll ever be fully healed from the cancer experience.
A cancer experience is a lot like grief — it’s something you learn to live with. With the help of my therapist, I am learning to find peace in my heart and not live in fear all the time.
You have spent a lot of time reflecting on your experience with the healthcare system. Where are we falling short in how we care for patients?
There was a real lack of compassion in the medical care that I received. If I had been shown more kindness and understanding, I don’t think the whole experience would have been so traumatic for me. Unfortunately, I was treated like just another middle-aged woman with breast cancer, which to my oncologist, didn’t seem that interesting.
Compassionate healthcare doesn’t take more time and it doesn’t cost anything.
The truth is that patients are harmed more when we don’t feel compassion from healthcare professionals. I was a breast tumour to them, and once it was cut out, they were pretty much done with me. And when you dehumanize the cancer experience, it makes the emotional burden of this disease even heavier on the person who is going through it.
In your book, Bird’s Eye View: Stories of a life lived in health care, you write candidly about what it felt like to be a vulnerable cancer patient. Why is the patient experience overlooked?
Patient feedback can be a real learning experience, but I feel that in oncology, doctors are so focused on the expert model — they think they know everything and they don’t want to hear from patients. Mortality seems to be the only metric they measure themselves against, and I think that they’re missing out on an opportunity to make a difficult experience easier on their patients. There’s more to life than just not being dead.
You recently had a photo essay published in the Journal of Medical Imaging and Radiation Science. What inspired you?
I wanted to document my experience and show what I was going through as a patient. Every day I took two images — one black and white image inside the hospital and one colour image outside the cancer centre. I wanted to show the stark contrast between these two worlds. Staff who provide care to cancer patients should know how the overall experience feels for us because for them, it’s an everyday thing. They come to work at the hospital every day and [it’s all the same] — they don’t even notice that the TVs in the waiting room are too loud, playing the news over and over again.
How do the gaps in our health system affect people with cancer?
There is a real lack of coordination and communication within our health system, so waiting for a diagnosis can feel overwhelming for a patient. People need support during this time — ignoring and dismissing the emotional and mental impact of being diagnosed with cancer is prevalent. There is also a tendency to minimize the side effects of breast cancer treatment. The whole ‘Your breast is burned to a crisp, but you’re alive so don’t complain about it’ attitude needs to change.
Those who have survived breast cancer don’t get tested after treatment and we aren’t adequately monitored in Canada, which doesn’t help with our emotional wellbeing. We’re expected to self-monitor and just show up at the emergency room if we are concerned about any new symptoms. I’ve had a number of friends who had breast cancer and their cancer recurred in another part of their body.
The element of kindness is missing in cancer care. The people who work in the system forget to look at us as human beings because they see people with cancer every day. Going through cancer is such a heavy thing to live with, but acknowledging how hard it is for people, asking patients what matters to them, acknowledging their loved ones and treating people like they’re more than a tumour can make a difference in someone’s cancer experience. Compassionate healthcare doesn’t take more time and it doesn’t cost anything.
Is there a way we can inject more compassion and kindness into healthcare?
We need humanity. I cover this in my second book, Ducks in a Row: Health Care Reimagined, which comes out early next year. Improving the physical space in cancer centres across the country so that it’s more of a healing environment — not playing the news, but instead incorporating classical music that’s composed specifically for health organizations, such as the music available through Australia’s Hush Foundation can make a world of a difference.
I also think that patients and staff need a safe space to share their difficult stories, and that mental health support for cancer patients should be universal and not just something that is available only to those who can afford it. Welcoming patient feedback and acting on it can also make things better for everyone.
When I went in for my first radiation treatment, the therapist said, “You have 12 minutes.” That was all the time that was allotted to me on the radiation machine and when you’re emotional and vulnerable, that’s not enough time to cry, ask questions or process what’s about to happen. We really need to dismantle the barriers and brick walls that are getting in the way of compassionate healthcare in Canada.
What advice can you pass on to other people with cancer who might be struggling?
Look for joy in the midst of the hard times, whether it’s in the city skyline or flowers in a garden. Find support online or through your cancer centre, and connect with others who have been through a similar diagnosis. It can help you feel less alone. I went on a Callanish retreat and met other people who were also going through cancer. It was so helpful to me.
Advocate for yourself. Ask for a warm blanket in the hospital. I talk about this in my book — the warm blanket is a metaphor for kindness. Document or journal your experience in whatever way makes sense for you, and don’t underestimate the importance of mental health support during and after cancer.
If you had only one wish …
I wish that the people who provide care to cancer patients would show more of their vulnerable side and let us peek into their hearts. I also wish that healthcare professionals would take the time to understand the full patient experience.
I’m not just a breast tumour.
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