A unique type of cancer has both pushed and inspired a local woman to action.
Article & image by Valerie Macdonald
Diagnosed in 2010 with multiple myeloma, a rare form of cancer that causes holes in bones, Alnwick/Haldimand resident Leslie Weatherby runs one of the few support groups in Ontario for people with the disease.
She has had two stem cell transplants, one in 2011 and the other in 2016. At present, drugs are keeping the disease in check. Some are covered by OHIP, and others she gets on “compassionate grounds” because their $10,000 monthly cost is prohibitive.
Multiple myeloma makes up just 1% of all cancers. It forms in the infection-fighting white plasma cells and accumulates in bone marrow killing off healthy blood cells causing pain.
Signs of this type of cancer include back pain, infections and fatigue.
Leslie has been getting good help from Dr Donna Reese who she met at a multiple myeloma conference in 2012 as well as her husband, Tony, who pledged soon after their meeting that he would raise $50,000 for the doctor’s research.
“That was three years ago,” Leslie said. Through fundraising initiatives and people contributing not just once, but multiple times, that goal has almost been reached. It’s now at $49,000.
Just one more fundraiser, likely a hockey tournament organized by their daughter Alana and the $50,000 figure will be met the couple said.
Like her husband leading his volunteer fundraising venture for multiple myeloma research, Leslie has become a volunteer with Myeloma Canada, a stand-alone group like the Canadian Cancer Society.
She organizes and hosts one of only 22 support groups in Canada.
Recently returned from the International Myeloma Foundation conference in Dallas Texas, Leslie continues to learn all she can about the disease and how to help others cope with it.
As a former nurse, helping is “part of what you do,” she said.
It took a long time for the medical profession to determine the nature of her disease. It began as undiagnosed back pain. Doctors didn’t have experience with it so “I started at square one learning about the disease,” Weatherby said.
She shares her knowledge and experience freely, feeling this supports others with Myeloma as well as their loved ones.
Her local group has about 25 members and brings together people from Northumberland, Peterborough, Belleville, Omeme and beyond.
“There is no other support group available outside of Toronto and Montreal” in this region, she said. She knows too well what it was like being diagnosed with no support group to go to.
The support group provides for education, but also sharing. It gives people a chance to talk about what they are going through.
Immune therapy is coming she said, “I won’t see it in my time.” Unlike chemo, it will not destroy good and bad cells or kill the patient as chemotherapy sometimes does.
Until that time, as a leader of the support group she founded, Weatherby will continue to share what she knows and feels, and continue to talk about what has been through while her husband will press on raising funds for research.