Our group started over fifty years ago!  Well, not really, but…

In 1966 I met Betty McPhee in Vancouver.  Three years later she was married and living in Philadelphia.  I was working on a medical team in West Africa.  It was over forty years later when we met by accident over coffee in a church in Toronto, where Betty and her husband now live.  But we had no time to visit — I was flying back to Vancouver later that day.  We agreed to connect on Facebook.  And that’s where Betty learned later that my husband had been diagnosed with a (non-WM) blood cancer.

Betty knew I was a registered nurse with a long career in health care.  She knew I was familiar with the chemo regimen for WM.  I’m not sure if she knew I had a lot of experience leading groups, but nevertheless, she asked me if I would consider facilitating a Vancouver group for WM people.  Betty came to Vancouver and we all met in a room provided by the BC Cancer Agency.  Bill, Brian and Jimmy (and his wife) were our first group members.  That first group was a small cosmos of what our present-day group is.  These three men were all at different stages of their illness.  And they each had something to offer and continue to offer to this day.  Bill still exudes hope and calmness.  Jimmy’s deep, quiet, intelligence gives us pause, and Brian’s long experience with WM and heartfelt care for everyone in the group is a gift to us.  And Janet, Jimmy’s wife, represents every caring spouse standing alongside their WM partner.

We started meeting in the lounge of my church in central Vancouver, kindly offered rent-free, with free tea/coffee.  Free parking too.  But there were downsides.  Anyone living in the suburbs had a lot of driving to do, and our afternoon meetings meant trying to get home before rush hour.  Taking transit was horrible.  We could really only meet a couple of times a year.

Meanwhile, in my life, our beloved granddaughter, Lucie, was diagnosed with leukemia.  Another blood cancer in the family.  And my husband’s remission ended.  Lucie was treated at BC Children’s Hospital, and their entire family of six lived in one room at Ronald McDonald House for eight months.  Her treatment continued for another year at home in northern BC.  By 2019 she was thriving!

And then my husband got a new, fresh, hungry cancer, unrelated to his blood cancer.  He’d survived a stroke, the blood cancer, open heart surgery and many other intrusions, but he could not beat this new diagnosis.  He died six months later, in 2019, after over 46 years of a wonderful marriage.

And then came the pandemic.  Obviously, our public meetings were out of the question.  We moved to Zoom meetings, new to most of us. Jimmy had a Zoom licence and looked after the technical part.  No one had to drive anywhere.  No one had to rustle up energy to leave the house.  For us, Zoom was a gift.

We had no idea what would happen next.  The group blossomed!  First, WM people who lived too far away to drive to meetings were suddenly able to access our group.  Then we expanded it to the whole province.  We started meeting monthly, and not a month has gone by that we haven’t welcomed at least one new member.  A few months ago, the WMFC asked the groups to find a co-leader for each group. Our group chose Brenda.  Brenda is one of our younger group members, and we’re a good mix.  Brenda brings tech knowledge I don’t have and whipped us into shape pretty fast.  She’s opinionated and smart.  She brings energy to the group and is utterly knowledgeable about everything happening in the WM world, and generously shares it all.  Where I’m quiet and reserved, Brenda is warm and exuberant.  I’m old.  She’s not.  We each have different skills and qualities.

Once we were established on Zoom, we were able to welcome Joe Lewicki, a WMFC board member.  I’d been hoping to have Joe as a guest speaker, but instead we have him as a regular group member, and this is so great.  Joe is a walking encyclopedia about Waldenstrom’s. Our gravel-voiced friend knows everything there is to know about this illness and is always willing to share his knowledge.  He doesn’t pretend to be a doctor.  He just shares his vast knowledge and has been hugely helpful to the group in general and individuals in particular.  And he has a sense of humour.  What more could we ask?

Our group is not a Waldenstrom’s Macroglobulinemia group.  It’s a group comprised of people who have Waldenstrom’s Macroglobulinemia — people with hopes, dreams, skills, courage, fears, patience, impatience, life experience.  Single people.  Married people.  Parents.  Grandparents.  And great big hearts.

Let me give you an example:

My little Lucie was doing so great in her recovery, when very suddenly, this Spring, she had a massive relapse.  She spent weeks back at Children’s in Vancouver with her mom, while Daddy remained at home in the Cariboo with the other three kids.  She was recently discharged to Ronald McDonald House again, and Dad and the kids have arrived to join them.  (This time they have two rooms!)  She can be with her family and still receive the chemo and other treatment she requires.

Unbeknownst to me, our group member, Brian, asked the group if maybe they’d like to send Lu a small gift.  Brian told me the response was overwhelming.  A short time later, Brian and his wife, Margaret (who also has serious health issues), went shopping and then personally delivered to RMH  age-appropriate gift bags of books and toys to ALL the kids, plus a gift certificate to a family restaurant and family passes to a local fun locale that does not require a lot of “hands-on” activity (important for immuno-suppressed kids).  And he even used his magic to get an autographed Canucks hockey stick for Lu’s beloved brother, Nolan!  I am overwhelmed with gratitude.

As I write this [July 2021], a number of our support group members are facing very critical medical issues.  This is a concern for us all.  We continue to meet through the summer because of this.  And Lucie has taken a very serious turn for the worse and has been readmitted to Children’s.  We anxiously await her bloodwork results each day.

In closing, this is not a report about a group.  This is a warm greeting to you all from a group of people in BC who are facing life in all its richness and all its complexities, one day at a time.

Kit Schindell (BC Support Group Co-Leader)

Kit is a retired former director with Providence Health Care in Vancouver. She has also been a freelance editor for over 25 years. She lives in beautiful Vancouver where she enjoys the twenty-minute summer, her grandchildren, her geraniums, her hundreds of books, and the occasional inch of vodka.

And to fill in more of the history of support groups in BC: Dennis and Charlene Kornaga were involved in starting a Vancouver Support Group in 2009.  They were also involved in the organization and planning of the Vancouver Educational Forum in 2014.  Unfortunately, the Kornagas moved to Vancouver Island and there was no one available to take their place.  During that time, Dennis faced some serious medical challenges (as did several other SG members), but we are very thankful to report that he is now doing very well and thriving in Courtney, on Vancouver Island.