I am a cancer researcher. When the disease hit close to home, I was overwhelmed with guilt

This First Person column is written by Sevtap Savas, who lives in St. John's. For more information about First Person stories, see the FAQ.

Being a patient advocate, a cancer scientist and having loved ones lost to cancer can be tough, motivating and emotional. I think and speak about cancer constantly, and it can make me sad, angry and hopeful — all at the same time.

I've decided it's time I write about it.

I started to work in cancer research when I was in my 30s and was recruited to Mount Sinai Hospital in Toronto for a post-doctoral fellowship. My primary focus was breast cancer and genetics. As a geneticist, I was confident with the genetics part, but cancer? Not so much.

So I started to read about cancer. The more I read about it, the more I got scared. It was such a common disease. Anybody could get it. It felt surreal — partly because I didn't have any relatives or friends affected by cancer at the time. 

That changed over time, of course. Now I have three close relatives affected by cancer. Two of them died because of it within the last five years.

Their deaths have profoundly affected me. I feel sad. But I also feel enormous guilt. How could I be a cancer scientist and not even be able to help my own family? How could I let them die? How could all my and others' cancer research fail them?

I dislike myself when I think about my failures as a cancer scientist. I do.

My sister

Fortunately, the third family member diagnosed with cancer is now a long-term survivor. She is the most important person in my life.

She is my sister.

Mehtap was in her early 40s when she became the first person to be diagnosed with cancer in my family.

She was diagnosed with a high-mortality cancer and was able to get surgery in a week. For a year or so, she had intensive treatment. She experienced lots of side effects but endured it and kept complying with doctors' recommendations. She says she pulled through the treatment phase and never lost her will to recover only because of the support of the family.

Throughout Mehtap's cancer treatment, my sister and I looked for information. We talked about her treatment and life in general. I refused to send her website links or translate pages (she doesn't speak English and lives in Turkey) that said what her survival chances were.

We talked about her will to live — not for a month or a year, but more. She wanted to live more.

Her doctors were great. They gave us all the information — and hope — we needed. We remember very clearly one thing Mehtap's surgeon said: we had "not used all the weapons at our disposal yet." 

My mom

Nothing prepares you to have a family member having cancer. Nothing.

After Mehtap's diagnosis, I kept saying to myself, "I do not like this life."

It was not supposed to be like this. My sister wasn't supposed to have cancer. It took me time to acknowledge cancer could happen to anyone, so my not liking life at that time was not even remotely relevant.

My sister's diagnosis made me more determined to keep going in cancer research, though I was full of sorrow, fear and hopelessness. At the time, I had just secured my faculty position at Memorial University of Newfoundland in St. John's.

Every day around noon, I would close my office door and call my sister at her home in Turkey.

Once, I heard her vomiting as a side effect of chemotherapy. Our mom, who was also Mehtap's caregiver, constantly soothed us and improved our morale. For months, we were hurt, pained, struggling and fearful, but she kept us all sane.

My mom is one of my loved ones who later died of cancer. She is the most beautiful person I have ever known. She was the most loving person in the family, and my siblings and I miss her so much.

I feel extra proud of my mom and, as a scientist, also extra guilty that she died. I sometimes feel that there is no space for me in a good place, metaphorically speaking — this is the level of the guilt I experience.

Caregivers do not get enough recognition and appreciation. Our mom not only took excellent care of my sister, but went to doctors' offices and treatment centres with her, did all the house chores and attended to everybody's pain, sadness and fears — including her own — all by herself.

I wish I could have shouldered some of her grief.

Facing the pain

Since I began working on cancer, I have been trying to solve the problems it causes — perhaps this also helps me put my emotions in a box in order to look at cancer objectively. Perhaps this dichotomous approach is what keeps me sane and allows me to attack this disease.

Am I suppressing my pain? Or do I have healthy boundaries? Maybe it's a little bit of both — and that's OK.

WATCH | Canada's cancer screening guidelines need updating: 

Canada’s cancer screening guidelines are out of date, doctors say

7 months ago

Duration 0:01

A group of cancer experts say Canadian national screening guidelines are a decade out of date, which is leading to people getting diagnosed later, when they are more difficult to treat.

In 2021, I started the Public Interest Group on Cancer Research. As the head of this fantastic group, which includes 10 public members affected by cancer and three Newfoundland and Labrador scientists, I am very proud of what we do together. While I initially envisioned it as a research group, it evolved fast and has become a great advocate for patients and families affected by cancer. We've also started to disseminate knowledge, lived experience and our findings.

We have organized a public conference, talked in public and academic events, helped students learn from our experience, published both media and scholarly articles among other things.

I believe we regularly face pain caused by memories of cancer. But I also believe that we find hope, support and strength in each other and in our work. The pain that comes with talking and thinking about cancer can be enormous. But we do the work anyway.

Maybe we find serenity in knowing that the next person will be better protected from cancer's effects, the next patient will be treated and supported better — much better than the patients in our lives. I believe we channel our negative emotions into collective hope.

For me, there is also a strange power coming from turning these emotions into an action or information that can benefit someone else. As I've said many times to our group's members, "As long as you stand next to me, there is nothing I cannot do."

In January, I created a new public partnership on cancer called the Patient Advisory Committee of Atlantic Cancer Consortium. I cannot wait to see how we will evolve and grow together.

Writing it down

I'm generally quite a reserved person, but opening up like this feels like the right thing to do.

Reading and hearing folks' cancer stories means I can at least put myself in a similar, vulnerable position — like they do — and honour them with my own, maybe relatively boring but honest, story.

I hope you will find something that resonates in my words. Whatever happens, I want you to know that you are not alone. Hang in there and your community will find you. They certainly found me.

Do you have a compelling personal story that can bring understanding or help others? We want to hear from you. Here's more info on how to pitch to us.

Download our free CBC News app to sign up for push alerts for CBC Newfoundland and Labrador. Click here to visit our landing page.