Harjeet Kaur: “Cancer is not your fault”

When Harjeet Kaur and her husband Anshul Narula immigrated to Canada from India in 2018, they dreamed of a good life … a prosperous life … the chance to build their careers, start a family, and enjoy the traditions and practices of their community in Canada.

What they didn’t expect, was having to face a life-threatening illness just over a year after arriving in Edmonton. They never believed their path forward would see Harjeet’s health deteriorate, bringing her to the ragged edge of life. And they could not have imagined that Harjeet would not only survive stage 4 cancer, but that she would find the courage and strength to become an advocate for cancer care and a vocal proponent of open dialogue in a community where discussions around cancer are difficult.

Fault in the Dream

It was 2019 when Harjeet began experiencing high fevers that lasted for months. There were multiple trips to emergency and countless tests, scans and biopsies, but doctors could not find the cause of the symptoms and worsening state of the otherwise healthy 32-year-old.

After a 10-12 week stay in hospital, just as she was reaching the height of hopelessness and despair, Harjeet learned she had stage 4 Subcutaneous panniculitis-like T-cell lymphoma (SPTCL). Her diagnosis was further complicated with an autoimmune disease called Hemophagocytic Lymphohistiocystosis (HLH). This particular diagnosis is extremely rare, with less than 150 cases reported worldwide. [Read details of Harjeet’s cancer journey.]

“One of the hardest parts for me was that we never talked about anything. My husband was always there for me – an amazing support. My mom came from India, my brother came from BC, and when I started treatment, my dad came from India too. They were all very good at taking care of my needs; food, medications, travel to appointments, all of it, but in our culture, we don’t talk about things. I could not share the pain I was going through,” said Harjeet.

Within days of her diagnosis, Harjeet began chemotherapy, and when it became apparent that she would need to shave her head, Harjeet was forced to confront the uncomfortable clash between her deeply engrained Sikh values, and this inevitable side effect of treatment.

“I had long hair, and in my community, in our culture, keeping our hair long is a very important part of our beliefs, so I really wanted to keep my long hair. I kept it for two rounds of chemo and then my husband came home from work and he shaved his head first – then he shaved mine. In our community we never see anyone with a shaved head. My dad found it hard, he could not see me like that, he had to leave the room. After that, every time I talked to my grandparents back home in India, I was told by my family to cover my head,” she said.

This was not the only difficulty Harjeet faced when navigating the conflicts between her health crisis and her faith community.

“There are a lot of stigmas around cancer in my community. It’s taboo to mention it, it’s contagious, it’s bad Karma, you don’t talk about it, and hearing those words – you have cancer – the only thing that comes to our minds is death,” said Harjeet.

After several months of chemotherapy, Harjeet was back in hospital for the next option that doctors hoped would extend her life – a stem cell transplant. She was fortunate that her brother was a 100 per cent match and could be her donor. Because of the pandemic she was forced to face this part of her journey alone, and while she struggled every day – fighting for survival – she found solace in journaling her entire experience.

“When I came home after 35 days of the stem cell transplant, I was completely bedridden. I couldn’t walk, eat, take a shower by myself – my mom took care of me like I was a baby. I couldn’t do much, but one thing I did do was keep writing my heart out as I wanted to express myself. I wrote my journey. I wrote my heart out. Thinking I might not make it through this, I wanted to express my feelings to my husband and my family. How grateful I am for them. The pain I was going through. Regret that we didn’t share our feelings,” said Harjeet.

Remarkably, Harjeet did make it through, but not without some huge losses, including her fertility. She also developed partial hearing loss, and she lost vision in her right eye due to Cytomegalovirus (CMV) retinitis. Still, she persevered and in the months after the stem cell transplant, Harjeet was given NED status – indicating there is ‘no detection of disease’ in her body.

While the journey continues with quarterly bloodwork and annual PET scans, Harjeet takes each day as a win, and has made it her mission to speak freely, raise cancer awareness, promote patient self-advocacy, and help shatter the stigmas in her faith community that hinder facing cancer and healing.

“In my culture, there are a lot of myths about cancer and I want to do something about that. I want to break the stigma and have open conversations. Cancer is not your fault and it doesn’t have to be a death sentence. It’s a disease; a medical condition which needs to be addressed. We need to be able to see it for what it is and talk about it,” she said.

Wellspring helps

When Harjeet found Wellspring online during the pandemic, she found a certain degree of comfort and support, but something was missing in her connection to this community.

“At Wellspring I found a supportive community, a place to keep my mind busy, people to talk to. But as an immigrant with South Asian heritage, I noticed that I never saw people of my colour and background in those groups. That’s when I knew there is this whole group of people with different backgrounds and cultures who don’t know how to get the help they need. They don’t know there are places like Wellspring that can support them,” she said.

That’s when Harjeet made it her mission to educate and advocate for others facing cancer. Today she spreads her message at Young Adult Cancer Canada (YACC) events, and speaks at various other conferences and health forums. She also has a blog, as well as Instagram which is devoted to helping cancer patients and particularly those of South Asian descent find accurate information and support channels. Harjeet will also be speaking at our upcoming online South Asian “Diverse Experiences of Cancer” event, which is open to the public. [Access Harjeet’s page online]

This winter, when Wellspring secured a grant for a South Asian Outreach Project, Harjeet was delighted – offering to help play a role in reaching this community and create programs specifically tailored for those she could relate to.

“I’m always looking for ways to collaborate and help get the message out about support and self-advocacy. I wanted my experience to mean something – to make a difference for others, especially those from my South Asian community,” she said.