Last weekend was to have been the first ever conference organized by Hodgkin’s International, in Boston Massachusetts, but sadly the coronavirus pandemic necessitated postponement. As one of our main goals is to connect people who have been treated for Hodgkin’s Lymphoma (HL), it was arranged that we would have a virtual meeting instead, on the same day. What a positive and amazing experience it was to be there! I have been reflecting on some of the main themes to emerge from what was shared, and trying to put them into coherent words. As a board, we are also reflecting on what to offer next after the clear success of this venture. The over-arching message has to be the importance of knowing that we are not alone, as expressed by many of the participants during the meeting. This has been heartening, and at times life-saving, as we learn from and support one another.
We deliberately aimed for an up-beat tone to the meeting, which was noted and appreciated by the attendees. We offered everyone the opportunity to introduce themselves briefly. If wished, we suggested sharing where we live, how long since our HL diagnosis or treatment, and something positive that we had noted or experienced during the current pandemic. It was hard not to talk for longer, to explore resonances and respond to shared experiences, but everyone did really well in containing themselves verbally. There was lots of empathic body language going on though, which was wonderful to witness: smiles, tears, clapping, nods of understanding and more. We all loved hearing each other’s abbreviated stories.
Many people had found the enforced slowing down in recent weeks to be beneficial. The chance to work less or not at all for a while was helping people to learn to pace themselves better, to reconsider their future workloads. Some had been writing books, or joining online clubs and lessons, reconnecting with friends and family, learning to cook better, to speak another language, or spending time in grieving or in packing to move house. Many been learning to do completely new things, from mask making through being our own hairdressers to raising chicks.
Spending time with our families has been a positive experience for many, whether that be our partners or spouses, or our children, be they youths or young adults. This extra time together was overall much enjoyed. This has made us rethink, along with the whole world, what is important to us, with family and friends being right up there at the top. Even having to wait to see a new grandchild could be given a positive spin, as the joy on finally meeting was so great.
From a health perspective there was also much that was good. People had been exercising more, in various ways, and enjoying nature and their gardens. Even cancelations of appointments turned out to be really helpful for some, opening up space to rehab in their own way after surgery, or to learn to manage chronic pain. The most extreme example of this was improvement of heart function from constrictive pericarditis after a cancelled operation to the point where surgery is not currently needed.
There was a great appetite for arranging more online meetings, both with a social basis and those with more formal agendas aimed at helping us to learn more about specific issues and late effects. We will definitely be planning in the near future how we can put these in place. As one participant put it, “you inspire me and give me hope”, and I think we can all echo that. The average age of survival in this group of almost 70 people was over 30 years, meaning that our toast at the end to “being together today and in the future” was celebrating International Cancer Survivors Day with over 2000 years of well lived extra life in one virtual room together.