Monthly Newsletter- April 15, 2022

 Deborah Silberberg

"Too Many Goodbyes- Why Losing a Fellow Survivor Will ALWAYS Hurt"
By Erin G Cummings 

Every time I hear that a fellow Hodgkin's survivor has died, I feel like I've been punched in the stomach. Even when I might have expected it, even though I know it may mark the end of someone's suffering, a little piece of my heart breaks. Every single time.

If you are a long-term cancer survivor, you know this feeling well. You probably had your first gut punch when you were being treated. I received some of my radiation therapy at Memorial Sloan Kettering Cancer Institute in New York City, back in the early 70's. There were times when I would notice that another kid would be there one week but not the next, and it wasn't because they got better. I didn't have to ask, I just knew. That was my introduction to the saying, "There but for the grace of God go I," the Catholic version of, "That could be me." 

Fifty years later, I've uttered the phrase, "That could be me," many, many times. It is a consequence of being alive much longer than anyone could have predicted. It is also because I spend much of my time looking for other Hodgkin's survivors, researching Late Effects, and trying to find clinicians and researchers who can help us. In the past ten years or so, I have met some extraordinary people- people who are just as determined as I am to stay alive, to jump over every hurdle thrown in front of us, and to support each other every step of the way. 

That is why it is so painful to lose a Hodgkin's friend. It's not just because their death is a reminder of how vulnerable we are, it is because every single person that we have lost is undeserving of what happened to them. Each one was as courageous and resolute as the next. We were privileged to know them all, even if we didn't know them well. It didn't matter. They were one of us.

We recently lost Deborah Silberberg, who we featured in an earlier newsletter. Deb was a big supporter of Hodgkin's International and a dear friend to many fellow survivors. Her unexpected death left us reeling, once again. 

I always struggle with how to share news like this with the people who are close to me. Do I tell them how scared I am, how much it physically hurts to hear about one more person dying? Are they tired of hearing these stories? Do they wish I would just not say anything and deal with it myself? Am I meant to be perpetually optimistic, believing that I will have a different fate? Is doing anything less than that not making the most of the life I still have?

We wrestle with those same questions at Hodgkin's International. How do we let others know that we have lost a fellow survivor without scaring people? How do we acknowledge death while trying to instill hope? On the other hand, how can we NOT honor, or even celebrate, the life of someone we call one of our own?

We have to be able to do both. We have to recognize that the longer we survive, the more we will have to face loss, and it will always be tough. But we also need to remember those who have been a part of our Hodgkin's family, and in the way that WE might want to be remembered- as wonderful, unique individuals who made our lives a little better because they were in it.

The article below appears in Cure Today. It s a brief commentary on what it means to be "left behind." There are additional articles that follow.
"What Quirk of Fate Left Me Here?" Article in CURE
What's in a Name? The Problematic Term "Provider"

by Jonathan R Scarff, MD in The Federal Practioner

I recently came across this article via the National Institute of Health National Library of Medicine. I will admit that I had no idea that the term 'provider' was so controversial, let alone that it had such an ugly history. I should have thought about it more. It's just one of those terms that I've used forever, without really understanding its true meaning. The following article was a real eye-opener for me. Agree or disagree, there is a lot here to make you think. 
Erin Cummings
The Problematic Term "Provider"- Johnathan R Scarff
"I Have A Voice"

Long-term survivor Sandra Moss describes her cancer journey in  Coping Magazine

"It was not the cancer that upended me. Rather, I feared that the side effects would never get better and I would never have my quality of life back."

Sound familiar? Read this inspiring story from a 72 year old who has survived multiple cancer diagnoses for over 50 years. 
"I Have A Voice"
On Lung Cancer Screening for Hodgkin's Survivors- What Would YOU Do?

Long-term survivors of Hodgkin Lymphoma have an increased risk of developing lung cancer due to earlier radiation and chemotherapy treatments. Researchers are looking at lung cancer screening (LCS) programs for this particular population. Below is an interesting and thought provoking article on the use of LCS for Hodgkin's survivors. It begs the question, "If you COULD know that you are at risk for lung cancer, would you WANT to know?"

Click the button below to read, "The Perspectives of Survivors of Hodgkin Lymphoma on Lung Cancer Screening," Rachel Broadbent, et al, in
Lung Cancer Screening for Hodgkin's Survivors
"What Happens When a Patient is Diagnosed With Secondary Cancer Years After Treatment"
by Karen Blum, in CURE- Spring 2022

While we are now using the term "subsequent cancers," this is a good article on one of the more concerning late effects of earlier treatment. It begins with the story of a Hodgkin's survivor who was diagnosed at age 13 in 1966. Click the button below to find out more. Additional articles in CURE follow.
Article on Secondary Cancers- Cure Today
"Spiritual Care for Survivors of Cancer"
Rev. Susan P. Conrad, Mdiv, ACPE, and Jamie Alexis Cohen, PsD- in Coping Magazine

Most of us could use a little help when it comes to caring for our "inner selves." We spend so much of our precious energy on the act of physical survivorship, we often forget to replenish our souls. Click the button below to read more about what you CAN do, and why you shouldn't wait to do it!
Spiritual Care for Survivors of Cancer- Coping Magazine
Let's Talk About Sex......

Why? Because we often don't, and we should. The sexual health of cancer survivors is just as important as any other facet of survivorship, and yet it's the one subject we avoid like the plague. Hodgkin's International is hoping to schedule a Zoom session on this subject soon. We are in the process of contacting possible speakers. In the meantime, here is an article that describes the difficulty in making sure that survivors have their needs and concerns addressed when it comes to sexual health. It appears in the October, 2020 issue of The Asco Post.

"Sexual Health Often Overlooked in Cancer Survivorship Care"-
the ASCO Post staff

Click the button below to read more.
Sexual Health and Cancer Survivorship Care
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