Monthly Newsletter- October 15, 2022

"Overview of Cancer Survivorship Care for Primary Care and Oncology Providers"
Raymond Chan, RN,PhD, Larissa Nekhlyudov, MD, MPH, Patricia Ganz, MD

This is a "must read" paper for survivors and medical providers. It is EXACTLY what is needed in the world of cancer survivorship- a comprehensive template for insuring that survivors get the care that they need. Download it, pass it on, place it in the hands of your doctors and caretakers. It's key.
Overview of Cancer Survivorship Care
On Vaccines- Recommendations for Flu and Covid Vaccines, October 2022

Here are the most recent recommendations about vaccines from both the World Health Organization (WHO) and the Center for Disease Control (US). Our understanding is that it is still crucial that those who are immunocompromised are fully vaccinated. 
  • The COVID-19 vaccine does not protect you against the flu. Conversely, the flu vaccine will not protect you against COVID-19. They are two separate viral illnesses requiring two separate vaccines. However, flu vaccines and COVID-19 vaccines can be given at the same time.
World Health Organization Vaccine Recommendations
CDC Vaccine Recommendations
Common Myths About the Flu Shot
On Coping with "Scanxiety"-
in The Patient Story

This is a welcome article on a subject that many of us deal with on a regular basis. While anxiety about follow-up scans can begin early on in the cancer journey, it is not uncommon to be fearful of test results well into survivorship, especially if you have already had a recurrence. 
"What Lies Beneath"-
or, "Maybe I'm not as strong as you think I am"

By Erin G Cummings

How often has someone said to you, "You have SUCH a great attitude! You just seem so up-beat after all you've been through! You actually look really good!"

And your answer is.....

A. Beaver Cleaver/Opie Griffiths-  "Aw shucks...."
B. John Wayne-  "That'll be the day...."
C. Jack Nicholson-  "You can't HANDLE the truth!"

I'm going to guess that most of us mumble "Thank you," and quietly accept the praise. What we really want to say is, "You have NO idea. I am hanging on by a thread." 

How often has it been suggested to you that a positive attitude would help you get better? If being optimistic was a cure for cancer, there would be a lot more healthy, happy people walking around. 

I'm not saying that survivors should act as miserably as they often feel, nor am I promoting a sense of despair. But I do think that there is an expectation from others, even those who know us well, that we need to keep smiling through it all. They need us to be brave. They need us to be resilient. The need us to keep on going- accept more treatment, endure another surgery, and do it with a rosy outlook and a steadfast determination that all will be well. And, if at all possible, look like something you might see in "Fitness Magazine".

Why? Why do we do this to each other? And why do we tend to internalize those unrealistic expectations so that they become our own? What would be so terrible about just saying, "Well that's nice of you, but I feel like crap most of the time, I have no idea what's ahead for me, and I'm scared of dying young." I think that for many of us, THAT would be a truly honest response.

During a recent visit with a cardiologist who was new to me, I spent the first ten minutes of my appointment waiting by myself. (Shocking, I know). When he finally came in, he started out by apologizing for his tardiness (also shocking) and said that he was late because he wanted to take some extra time to review my chart. "There's a LOT to read," he said. He then looked at me squarely and said, "You look a lot better in person than you do on paper." He wasn't laughing. This doctor was about to tell me that I had yet another serious cardiac condition, for which there was no easy fix. 

Some may have been offended by his candor. Not I. I was relieved that he was telling me the truth. I do look better on the outside than I feel on the inside. How could this damaged body be hidden from sight? Aside from a few visible scars, there were no red flags waving to say,  "Warning! Warning! She looks OK but she's a medical mess!" 

That may be the problem for so many long-term survivors: we may LOOK pretty good, we may even FEEL pretty good most days. But both of those things belie the fact that we have endured many, many challenges. And that's exactly why those well-meaning compliments can be hard to accept. 

Maybe the key word is "well-meaning." Maybe we need to take ourselves off the hook and not interpret admiration as an instruction to be more than we are capable of. Maybe hearing, "You are so strong, please be strong, I need you to be strong," is just another way of saying, "I care about you. I want you in my life. I don't want to lose you."

That's a message I can live with.
Inspiration: How to Find Yours
by Gary McClain, MS, PhD, LMHC in Coping Magazine

from Erin-

"I was chatting with fellow Hodgkin's survivor and life-long advocate Susie Leigh recently about how difficult it is to feel inspired, especially when we are feeling tired and drained from all of our late effects. How do we make a move to get up and get going when all we want to do is collapse on the couch? How do we get motivated and STAY motivated? 

Let's start by saying that if this is you, you are NOT alone. You've got lots of company. Click the button below to get started on feeling inspired."
How to Find Inspiration- Coping Magazine
Video: "Advances In Heart Valve Calcification Treatment"
from Adam Pick at

Heart valve calcification has become increasingly common in long-term survivors, especially those who have had radiation treatment to the chest. We are always looking for new treatments, new procedures, and a better understanding of why this can be a life-threatening diagnosis. Click the button below to learn more.
Video on Heart Valve Calcification
The Facts About Hodgkin Lymphoma- 2022
by Jamie R. Herndon, MS, MPH in

Interesting update with current statistics on Hodgkin Lymphoma in the US, particularly regarding the breakdown by ethnicity. It looks like the rate of diagnosis is fairly close in Non-Hispanic Whites (2.9% per 100,000 people) and Non-Hispanic Blacks (2.7%), followed by Hispanic (2.3%), American Indian and Alaska Native (1.7%), and Asian and Pacific Islander (1.3%).

It makes us curious as to why we don't see more people of color on our social media support sites, such as Facebook. We need to do a better job of making sure that we are reaching ALL communities. 

Next month- a look at Hodgkin's statistics in other countries.
Hodgkin Lymphoma Facts
On Palliative Care- what IS it, and what is it NOT?
from the National Library of Medicine, Medline Plus

There have been an increasing number of cancer survivors, particularly long-term survivors, who have chosen palliative care as a way of treating and coping with symptoms, yet there are many who still confuse palliative care with hospice care. They are actually NOT the same thing. Here is a good article that addresses these differences. It includes this excerpt:

"The Difference Between Palliative Care and Hospice

Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. 

Hospice care is most often offered only when the person is expected to live 6 months or less."

Click the button below to read the full article.

Palliative Care
Copyright © 2022 Hodgkin's International, Inc., All rights reserved.

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