I read a post yesterday on another cancer support site that reminded me of why we started “Hodgkin’s International.” It was written by a gentleman who was a Hodgkin’s survivor. He had been hearing about the long-term effects of treatment, had learned of the plight of some of his fellow survivors, and was beginning to have some difficulties himself. He was scared. He wanted to know if there was any “good news” out there.

​I can’t imagine that there would be a “good” time in one’s life to have cancer, but I CAN say, that from personal experience, the teenage years isn’t one of them.

​IF, AS A TEEN, YOU WERE NOT ALREADY WRESTLING WITH “NEGATIVE BODY IMAGE,” A CANCER DIAGNOSIS WOULD GET YOU THERE PRETTY DAMN FAST.I was diagnosed with Hodgkin Lymphoma when I was fifteen, in the summer between my freshman and sophomore year of high school. I had finally begun to shed the baby fat that had stubbornly clung to my stomach and upper thighs- the extra poundage that had forced me to shop in the “Chubette” section of clothing stores (and yes, there really was such a department). After years of sporting a short “PIxie” bob, I had begun to grow out my hair for the first time, impatiently awaiting the day when it would be long enough to toss over my shoulder or draw up in a pony tail. The shape of my face was finally catching up to the size of my teeth, which seemed enormous, slightly crooked, and were laden with silver fillings.

“Come On And Let Me Know- Should I Stay Or Should I Go?” The Clash

This is exactly how I was feeling about life three years ago. More than thirty years after radiation treatment- huge amounts of crudely aimed cobalt radiation to the mantle field- some serious late effects had come at me full force, one after another. My aortic valve was already under surveillance by the cardiac team when the breast cancer diagnosis came in. Over the next three and a half years, I underwent a double mastectomy, open heart surgery for a new aortic valve, and finally, a thyroidectomy. I was trying to hold my health together and stay afloat financially at the same time, performing contract work which barely paid for the health insurance and associated costs. I was sinking deeper into a bottomless hole.

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.