Marlie Smith, (L), clinical nurse specialist in the Adolescent and Young Adult (AYA) program at Princess Margaret Cancer Centre, provides support to Jules Whish, a patient living with a cholangiocarcinoma diagnosis. (Photo: UHN)

When Jules Whish went to the doctor in 2021 with mild stomach symptoms, she had no idea she was going to be diagnosed with Stage 4 cancer.

Jules, 38, had given birth to a healthy baby two years earlier and was seemingly healthy.

"I thought the doctor was going to tell me to give up dairy or soy," she says.

"I never thought for a second that I had cancer. How can I when I'm totally fine?"

It turned out Jules had a rare bile duct cancer called cholangiocarcinoma, which had already spread to her liver and lungs by the time she was diagnosed. In spite of this devastating news, Jules was determined to approach her treatment with a sense of hope, meaning and even joy.

"No matter what kind of cancer you have or what stage you're at, it's going to be part of your life forever," she says. "It comes down to finding ways to live your life with the diagnosis you were given."

Jules uses art to foster a positive outlook, coming into her appointments at Princess Margaret Cancer Centre with what she calls "chemo glitter."

"My biggest message I want sick people to know is that there is still so much love and joy to be had – obviously there are days where I feel bad – but a lot of the time, I feel really good," she says.

Jules wears chemo glitter on her cheeks when she comes in for treatment to spread positivity and to spark a conversation with new people.

"Doctors and nurses always love it, and I love seeing smiles on people's faces" she says.

While many come to treatment seeking solitude, Jules searches for ways to find community and connect with others. She has even made a friend with someone her age with a similar diagnosis, prompted by her chemo glitter.

"She came up to me and said 'there's not many people here who look like you.' We exchanged numbers and became friends," she says.

Deena Blum, (L), and her sister, Nonnie Smith, share a happy moment together. (Photo: UHN)

Jules' age and type of cancer are especially challenging. The more common a cancer is, the more funding and research it receives. Cholangiocarcinoma is rare and critically understudied, often leaving Jules with more questions than answers.

"It can be isolating to be a young woman with such a rare cancer…where do you fit in?" she says, noting that breast cancer is the most commonly talked about cancer diagnoses amongst young women.

Marlie Smith, a clinical nurse specialist in the Adolescent and Young Adult Program (AYA) at the Princess Margaret, says the number of cancer patients in the young adult age group is less than 10 per cent of all adults who are diagnosed at the cancer centre.  

Marlie, who has provided support to Jules throughout her cancer experience, says this creates a gap in care.

"For patients with rare cancers who are also young, it's a two-fold setback since there's not that many and the community isn't quite there," Marlie explains.

"That trend is reflected in the clinical setting, where you see a lot more older adults, which can increase the sense of isolation that young patients are feeling when they go through their treatments."

Marlie notes the AYA program aims to give young patients navigating cancer an opportunity to connect with each other.

"I've taken what I've learned from her and have been able to relay that to other patients," Marlie says. "It's been very impactful not only for my patients, but for my own family too."

Marlie's aunt Deena is a lymphoma patient at the Princess Margaret. After Marlie saw Jules' chemo glitter, Marlie's mother, Nonnie, began putting make-up on her sister Deena, and bought her a pair of matching earrings.

"It's about fostering your sense of self-confidence and learning to live well in spite of such a life-changing diagnosis, and Jules has done an excellent job of that," Marlie says.

Deena and Nonnie wear the cancer bracelets that Deena made, designed by Nonnie. (Photo: UHN)

When Marlie was 16, her infant cousin, Melanie, was diagnosed with acute lymphoblastic leukemia. Melanie, who was Deena's daughter, passed away at six-and-a-half months following a bone marrow transplant.

That was a turning point for Marlie, who then decided to dedicate her life to helping children with cancer.

"We gave the stethoscope that we used to monitor Melanie, to Marlie," Deena says. "She went on to work at Sick Kids Hospital for seven was an honour to see her take a stand."

While Deena is not artistic, Nonnie is.

A tattoo artist with a knack for arts and crafts, Nonnie designed a cancer bracelet that was simple enough for Deena to make on her own. Deena makes the bracelets, as well as bedazzled gloves, to cultivate hope and meaning.

The bracelets are on sale at the Princess Margaret Wig Shop for a small donation, which will go towards lymphoma research.

"I wanted to do something that gave me a sense of purpose," Deena says. "Making bracelets gives me hope, and seeing people buying and wearing them is motivation to keep going."

Nonnie agrees, noting that art has been therapy for her sister.

"It's such an integral part of recovery," Nonnie says. "When you're doing something beautiful like this, you're putting all the bad things in life on hold and focusing on something that enables you to feel the joy that has become so distant."

While Jules, Marlie, Deena and Nonnie know first-hand how life-altering a cancer diagnosis can be, they all agree that life is still livable, even in the absence of a cure.

"We all have an idea of how our life is going to pan out, and a cancer diagnosis can drastically disrupt that," Marlie says. "But our patients have taught us that we can live well with cancer, and I hope to encourage every patient to continue setting goals and aspirations for themselves every day, one step at a time."

After this story was finalized, Deena Blum passed away. Her family hopes her story provides hope and inspiration to all reading, as this is what Deena was hoping to achieve.

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