The new reality with Covid-19 has changed how we are all living. In these unprecedented times, Canadian WM patients have continued to support each other, but are doing it differently. Face to face meetings have allowed us to mingle and socialize as we give and get support. In the past few months, we have been able to continue supporting each other differently through virtual meetings. As one of the Toronto Support Group members, Ibrahim Abaza, said, “Now I have a WM family!” If you have not connected with a Support Group yet, consider joining a Zoom meeting! Please check our Facebook or website www.wmfc.ca for dates and times. Here are some of our Canadian Support Group stories.
In Atlantic Canada with the Pandemic/Lock Down upon us, in an ever- changing world, we introduced bi-weekly Zoom meetings mid-March, for our Support Group Members. They have been well attended by Patients and Care Givers. Topics discussed range from current treatment patients are undergoing, the forever changing protocols for appointments, blood collection, wearing PPE, to actually leaving our homes or not. It has helped to alleviate confusion and mental stress for members. Other topics have included dealing with self-isolation and how to stay connected to what is important and family. The sessions typically last one hour, with 100% participation from those attending.
Jim Mason (Co-Leader)
On Wednesday, February 26th the Toronto Support group met at ELLICSR: Health, Wellness & Cancer Survivorship Centre in Toronto General Hospital in downtown Toronto. After a few important announcements we watched part of the presentation that Dr. Treon gave to the Montreal Support group in November 2019 – Updates on the Genomics and Treatments of Waldenstrom’s Macroglobulinemia. Attendees found it very valuable. It was attended by 20 members and after the video, members were free to ask questions and provide updates on their WM journey. The next scheduled meeting was to be on April 29th at the same location. Due to the COVID-19 situation we decided to have a Zoom Meeting instead. About 20 people joined the meeting. For many it was their first experience with Zoom and it worked well. The meeting was moderated by Betty McPhee (WMFC Support Group Liaison) who did an excellent job of making sure everyone had a chance to speak and ask questions. Most of the time was spent discussing how everyone is keeping safe during these uncertain times, how they are handling doctor appointments, doing lab work, dealing with scheduled treatments and what actions people are taking to stay mentally healthy as well. It was so well received that the attendees asked to have another Zoom Meeting in a month.
Raffaela Mercurio (Co-Leader)
The spread of COVID-19 has changed the way the world communicates and has introduced a whole new way of life. Virtual hugs, social distancing, self-isolation, and quarantine are now a part of everyday life, an unfortunate necessity in order to help flatten the curve.
The Ottawa WM Support Group meets six times a year – four regular meetings and two social meetings. Our last meeting was scheduled for April 23rd. Needless to say, with a state of emergency declared in Ontario, our plans fell through. One of our members had the brilliant idea of holding a meeting over Zoom. We were very fortunate that Paul Kitchen – Board Chair of the Waldenstrom’s Macroglobulinemia Foundation of Canada – has a Zoom account that allows unlimited call time. Using Zoom was a learning experience for several of our members including myself. We had 15 members participate and we felt that it went quite well.
We learned several lessons from our first meeting. 1) Make sure everyone is logging in at the correct time – different time zones can cause confusion. 2) Sign on a few minutes early, in case you run into technical issues. 3) Most importantly, if you are not talking, keep your microphone muted – this eliminates extraneous noise from being transmitted.
I would recommend any secure video conferencing application for times you are unable to meet face to face. Not just during the pandemic, but afterwards as well – any time that weather interferes with your normal meeting, or when multiple members can’t attend in person but can attend online. As I write this, we are in our ninth week of self-isolating and social distancing, and the Ontario premier has just extended the state of emergency once again. Our motto continues to be “Stay home. Stay safe.” We must all remember that there is a light at the end of the tunnel, and that this will eventually be over.
Janet Parcher Cherry (Support Group Leader)
The Vancouver Support Group is doing well. Everyone is taking the restrictions seriously. We have a wonderful Provincial Health Officer, Dr. Bonnie Henry, who urges us to be calm, be safe and be kind. We are looking forward to our first Zoom meeting!
Catherine Schindell (Support Group Leader)
On Wednesday, May 13, a meeting of the Montreal Support Group took place thanks to Betty McPhee. Danielle Gagnon, Robert Perrault, Mark Seliskar, Lucie Martineau, Claude Gélinas and myself had a congenial and fruitful conversation. Although we are all fluent enough in English, Betty was kind enough to let us carry on in French. We all made a short narrative of our medical history and voiced our questions. As is probably the case with any support group, our stories are all entirely different, which makes the meeting all the more illuminating. Lucie and Mark having had substantial experience in consulting with the Dana Farber Institute, shed light on the best way to proceed and what to expect. We have decided to meet again in the fall and, confinement or not, doing it on Zoom is the only realistic way of getting together as only two of us are actually in the Montreal city area; one is 100 km northwest, another 125 km southeast and a third, 250 km northeast! Heartfelt thanks to Betty for bringing this promising group to life!
Paul Cadrin (Co-Leader)
Like other support groups, Covid 19 has forced the cancellation of our regular quarterly meeting. Following in the footsteps of other Canadian Support Groups, we thought that we would attempt our first Zoom Meeting on May 14th. We had 13 participants on zoom, with one audio only. We realized that a couple of our members do not have computers and a few live in the country where they have to pay for time on the internet. We have now learned that the audio only technique over a land line works very well and will be able to offer this service to these members for our next Zoom meeting.
Paul Kitchen, Chair of the WM Foundation of Canada, was our guest speaker and provided our membership insight into the workings of the Canadian Foundation along with a personal history of his journey with WM. One of the more interesting topics he touched on, was his recent participation with the IWMF Research Advisory Board, in their recent grant review and project awarding meeting for research in WM. As a result of this meeting and other discussions, the WMFC has agreed to participate financially with the IWMF in some of their selected research projects.
Our meeting included discussions about the effects of Covid 19 on WMers as well as how to book private medical lab appointments for both our annual and oncology blood work tests for our immune compromised folks during these times. This was followed by a lengthy round table discussion with each member updating the group with any changes in their WM history and upcoming treatment. Three of our members have had recent stem cell transplants and the group was very interested in the process, results and their individual recovery.
All in all, it was a terrific meeting, as we also welcomed 2 new members to our group. We are looking forward to the end of the Covid 19 restrictions and another Zoom meeting.
Cameron Fraser (Co-Leader)