- Diagnosed with splenic marginal zone lymphoma

Celia's story

Where flowers bloom, so does hope

Five years ago, on her daily bike ride to work as an ESOL literacy tutor, Celia Hope felt a throbbing discomfort in her abdomen. She didn’t take too much notice of the pain; she was fit from cycling for many years.

But over the following weeks, she experienced dizziness and bloating when she ate.

“I couldn’t eat much at mealtime. I was so uncomfortable I told my husband, Tim: ‘something isn’t quite right; I think I need to get this looked at’.”

After Christmas, her GP ran blood tests and sent her for an ultrasound which picked up the enlargement of her spleen and liver. From there, she was referred to haematology and had a CT scan and bone marrow biopsy.

“Within a month, I was diagnosed with splenic marginal zone lymphoma (SMZL). It’s a mouthful.”

SMZL can be very difficult to diagnose as it’s rare (accounting for roughly 1% of non-Hodgkin’s lymphoma cases) and it can look like other types of lymphoma.

“That was a shock. It was difficult, because my mother’s health was deteriorating, and she passed away within a couple of days of my diagnosis. A double whammy.”

After immunotherapy treatment, the haematologist told Celia she was in remission. She spent the next year in relatively good health.

“In 2018 I felt really good. It was coming up to my 60th birthday, and I thought, I want to do something significant. I did a fundraiser for LBC! My plan was to cycle, cumulatively, 600km over the month of October, and raise $2,000.”

Celia surpassed her goals: “I cycled 700km and raised almost $4,000.”

But at the end of 2019, the bloated feeling came back. Another CT scan showed her lymphoma had resurfaced and she went back into treatment.

Tim was in his element as a carer and provider – giving her injections and contacting LBC Support Services when Celia couldn’t. They went to LBC support group sessions together and were grateful for the visits from Matt in the Hamilton Support Centre. But it was Tim’s positive attitude – and Celia’s – which helped her the most.

“Tim believed I would get through it, he was there to support me and would often leave me little encouraging notes.”

One of the hardest parts of her treatment was that she couldn’t join Tim for the bike rides they loved so much. “He’d pick flowers out on his rides and bring them home for me.”

Flowers were part of a tradition between Celia and Tim, who met on a bicycle tour across Canada in 1997 – back then, Tim helped Celia decorate her bike with daisies he had picked.

“He’s amazing. He was always there when I had the infusions. Once we got into lockdown, he couldn’t come anymore, but he was always there to pick me up – in both senses of the word.”

But on a Sunday morning in June, Celia’s life turned upside down once again:

“I was still trying to cycle a bit. We biked our usual route to the farmer’s market in Hamilton. On our way there, Tim was hit by a truck and was immediately unconscious. He spent five days in the hospital. He didn’t make it.”

“That was my biggest tragedy, yet I still had to get through treatment – that was my focus. I knew that Tim would have wanted me to do that.”

The grief was overwhelming, and chemo left her with terrible wrist pain from the IV. But Celia’s two brothers, cousin, sister, neighbours, friends, her dog Lucky and the LBC team gave her the support she needed.

After Tim’s death, Celia got a phone call from Zoe, an LBC Support Services Coordinator:

“That was just amazing. She was so caring. She helped me through the last treatment and put me in touch with the nurse specialist that I felt most comfortable with.”

Today, Celia feels healthy and positive about the future, and hopes to get more involved in advocating for cycling safety.

“At the end of January, I had a memorial gathering for Tim in our garden and had a memorial seat made. It’s outside our house, on the roadside and daisies are just starting to bloom beside it”