By Rachel Gingold
Hodgkin’s International--and our online Facebook support groups--has a wealth of information about late effects from treatment for Hodgkin lymphoma. However, managing your anxiety, while learning about late effects can be a challenge. After all, some late effects (such as cardiac impairment and supplemental cancers) may be life threatening and thus frightening. It is common for cancer survivors to experience the dreaded fear of recurrence after they are done with treatment, so naturally, learning about new late effects can also leave us overwhelmed, and fearful of developing something new. How can we stay informed without panicking?
By Cathy Pipcho
This past July ‘21 I was given the opportunity to attend Epic Experience, a week long adventure camp held in the Colorado Rockies, to “experience life beyond cancer”. I had applied in ‘19 and was accepted after submitting an application, medical records and clearance from my doctor. After Epic’s own medical review I was notified I’d be at camp July ‘20. Last year had different plans for all of us but a few months ago when Covid numbers fell and effective vaccines were available I was alerted it was a go if medically reapproved.
I know all of us are anxious in the current CV19 atmosphere in addition to waiting to hear from our tribe member Lori Gluckman Winterfeldt to tell her personal account of a 3 week hospital stay due to coronavirus. Lori will be personally giving her detailed account in the future but in the meantime she felt it imperative to give an update, to share, to help, to uplift her fellow tribe members.
JOIN IN AND SIT AT OUR DINING TABLE
– By Cathy Pipcho
Hodgkin’s International was initiated after extensive planning and brainstorming. We had in mind that “International” would be all encompassing to include anyone diagnosed with Hodgkin’s Lymphoma.
Summer is just around the corner (FINALLY!), and we can all look forward to spending more time outside- on the beach, going for a walk or a hike, or just lounging around in our own back yard. As wonderful as that may sound, what you may NOT know is that being outside poses a potential risk for Hodgkin’s survivors who don’t have a spleen, or who have had an irradiated spleen- I’m talking about the dreaded tick.
Marjorie Rosenthal is an associate professor of pediatrics at the Yale University School of Medicine in New Haven, Ct. She is also a cancer survivor, as well as a contributing writer to WBUR and CNN. This article is from 2016 and describes the author’s personal experience as a “patient” in a survivorship clinic.
Hodgkin’s International is working hard to identify survivorship clinics around the world. We hope to begin to list them on our website in the very near future.
In the meantime, if any of you have specific thoughts, recommendations, or reactions to this post, please do not hesitate to contact us.
To read Marjorie’s story, click on the link below:
Despite all the late effects, the constant struggles, the pure weariness of having had cancer, there are a few fringe benefits that come with being a long-term Hodgkin Lymphoma survivor. Here are a few, in no particular order…
Put down your romance novel and pick up a REALLY great book!
These books are not exactly what we would call “light reading,” but they ARE books that we promise will inform, inspire, and maybe even change the way you think about survivorship. These are the stories of true warriors- those who have battled to survive and those who have fought to find a cure.
They are all heroes in our book.
1. Know your history
Most of us can remember almost every gruesome detail of our journey with Hodgkin’s- every surgical procedure, radiation or chemotherapy treatment, every infusion, needle prick, doctor’s visit, or hospital stay. As time goes on, however, even the most painful memories can be skewed by the mere struggle to get through the day-to-day business of surviving. It is also quite possible that your battle with Hodgkin’s may have been so long ago that it is just a blur at this point in your life.
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.