Spotlight on Lorelei Dalrymple

Person living with myeloma, Support Group Leader, Past Patient Advisory Council Chair, Myeloma Canada Board Member

(Edmonton, Alberta)

Editor’s Note : In celebration of our 15 ^th Anniversary, the Spotlight section of Myeloma Matters has changed slightly. This year, our Spotlight Stars have been asked to share their stories alongside their relationship and involvement with Myeloma Canada. We hope you enjoy meeting our 2020 Spotlight Stars and that the new format provides you with information you didn’t know before. To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.

Lorelei, how did Myeloma Canada come into your life?

Lorelei Dalrymple

When I was diagnosed with myeloma in 2009, my doctor gave me this wonderful patient handbook that was done by Myeloma Canada.

In the handbook, I remember having all the information a person could want. It gave me the opportunity to reach out and connect with people.

How is myeloma impacting your life?

Well, it’s been an interesting 10 years! I’ve had a stem cell transplant, radiation, and treatments while working full-time. It changes your life in so many ways. You start to appreciate things differently and you don’t sweat the small stuff so much. I think I have a better appreciation for the people I have around me, and for the things I have.

It certainly can be a hit to the pocketbook if certain medications aren’t covered! It’s not always the medications to treat the cancer, but often those that treat the side effects of these medications.

The disease has allowed me to meet a really amazing group of people from coast-to-coast, so definitely some pros! The cons would be having to say goodbye to some of them. Some of my friends went far too early in their journeys. [Myeloma] touches every aspect of a person’s life, it really does… your physical and emotional well-being as well as the financial impact, and what that may bring to relationships.

In what ways has Myeloma Canada helped you through your myeloma journey?

They’ve helped me become a far better advocate. There’s a lot of advocacy that we [Myeloma Canada and I] do, not just for access to drugs, but also on how to become better at educating patients so when they meet with their healthcare providers, they’re able to speak to the issues, ask good questions and not be intimidated by the medical professionals. Not that they’re intimidating, but because they are very, very good and are considered the experts! But, nobody knows your own body as well as you do, so it has to be a partnership.

Lorelei at the Montreal Multiple Myeloma

March in 2019.

Myeloma Canada has helped me understand that better. My relationship with my healthcare provider, is just that. It’s a collaboration and not a one-way street. I’m now far more educated and aware of what’s out there.

Myeloma Canada has also helped me connect with patients all over Canada and internationally, which is amazing. A lot of people think that Canada has universal healthcare but it really truly isn’t. Access to treatments is still determined province by province. The advocacy work that we do has really helped me understand how lucky I am to be in Alberta. Myeloma Canada has been very supportive, the team is so amazing…to share experiences with like-minded people is very helpful. The connections I’ve made with doctors from the Myeloma Canada Research Network and through Myeloma Canada’s Scientific Roundtable - I’ve been lucky enough to attend 5 of these conferences - just to see all those brilliant minds come together in one room, working on this one disease… it’s just, it creates hope. It creates hope.

How do you contribute to advancing the cause of those affected by myeloma?

Lorelei and Susan Dunnett,

from the University of Edinburgh.

I help with a local support group here in Edmonton. We make sure that folks in Alberta have resources to use. We have done educational conferences and wellness fairs locally. I have also been very active with Myeloma Canada which brings the patient voice forward - I participate on their advisory board - we are strong advocates for patients living with myeloma. I have recently joined the Board of Directors for Myeloma Canada and hope to bring the lived experience of the disease to the board.

Advocacy plays a major role in advancing access to new treatments, whether that’s spending a day at Parliament or a day at the Legislature here in Alberta. We [Myeloma Canada and I] also will do letter writing campaigns. We know how the system works with myeloma. There has to be flexibility with treatment options. We try and find whatever needs to be addressed, and beat the drums.

Why do you feel Myeloma Canada is the best "medium" through which to advocate for those affected by myeloma?

I truly believe that Myeloma Canada fully understands the Canadian experience and the landscape of Canadian healthcare. They bring healthcare providers together with patients and caregivers. They ensure that we have the tools needed to get specific treatments and to be the best educated patient group. And, going forward, that we’re able to advocate for ourselves and for others.

If you had one wish for patients and their loves ones, what would it be?

In the absence of a cure, a good life with minimal side effects.

Thank you for your time and insights Lorelei, and all you do alongside Myeloma Canada.

Thank you!

Editor’s Note: To donate to Myeloma Canada, please visit www.myeloma.ca or call us toll-free at 1-888-798-5771 .