the five most important things to do as a long-term survivor of Hodgkin lymphoma

Or…..”A few humble suggestions from an old-timer…”

By Erin Geddis Cummings

(Disclaimer: the following piece represents the personal views of the author. It is not intended to express the opinion of the organization, Hodgkin’s International).
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  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.

    In either case, it is important to get as much information about your medical history as possible, and as early on in your journey as possible. Copies of medical records, office visits, and in particular treatment notes can be incredibly valuable, especially when dealing with “Late Effects.” For example, knowing EXACTLY what areas of your body received radiation, what kind, and how much could be a predictor of whether or not you are at risk for heart and lung issues, breast cancer, thyroid disease, infertility, and a host of other health problems.

    Try to get in the habit of requesting copies of treatment notes, procedures, in-patient stays, etc., every time you are seen by someone or are admitted to the hospital. Many hospitals and clinics offer this data electronically through an on-line patient portal. For those survivors who were treated years, even decades ago, this can be a bit tricky. (If you know what the term “microfiche” means, then you were probably treated a long, LONG time ago!) You may have to do some serious digging and/or jumping up and down to get the hospital that treated you to locate and release records. It is your right, however, to demand these records if available. While there may be a cost attached to making copies, it could make an enormous difference in your follow-up care to have that information.

2. Find a doctor or medical team that you trust

Easier said than done, that’s for sure. We’ve heard from far too many survivors who have gone from physician to physician, trying desperately to get someone to listen, to take their complaints seriously, to simply acknowledge that there IS such a thing as “Late Effects”. If you are lucky enough to be in the care of a doctor or medical team that is knowledgable about Late Effects and is pro-active about your health care, anticipating possible issues and acting on them BEFORE they become life threatening, all the better. If, however, you are wearing yourself out by getting the “run around” or worse, being ignored by your health care provider, it might be time to find someone else. Survivors need all the energy they can muster just to get through each day. Using that precious energy to fight to have someone believe you is exhausting and counterproductive.

Again, do your research. If you need to find a different provider, find out who has experience in cancer survivorship, not just oncology. If possible, try to speak with others who have had a similar diagnosis and who have found a place to go where they feel well cared for. Look into Survivorship Clinics in your area. If there are none, contact the closest Survivorship Clinic and ask who they might refer you to. Check the names of providers in the clinic and see if they might be affiliated with other hospitals or institutions that could help you.

3. Make a Survivorship Plan

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This is especially important for survivors who DON’T have access to a specialized Survivorship Clinic. A Survivorship Plan can go with you anywhere. Think of it as the scaffolding for your future as a survivor- an essential guideline for optimum health and a way to get ahead of the Late Effects you may be at risk for.

A Survivorship Plan will include your medical history, any surgeries and treatments, a record of vaccinations, prescriptions, etc, as well as a schedule for future tests and procedures, such as mammogram, colonoscopy, pulmonary function tests, echocardiogram, bone density test, etc. The number and frequency of those future tests will depend on your personal treatment history as well as other health issues you have dealt with in the past, such as diabetes, high/low blood pressure, cardiac issues, etc. Keep your Survivorship Plan up-to-date and make sure that all of your health care providers have a copy.

Hodgkin’s International is in the process of developing our own Survivorship Plan and will be making it available shortly. In the meantime, here are a few links to other Survivorship Plans.

https://www.cdc.gov/cancer/survivors/life-after-cancer/survivorship-care-plans.htm

https://oncolife.oncolink.org/form/oncolife_v11/

(For further information about Survivorship Plans, please go to the “Resources” Page on our website)

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4. Don’t go it alone

There’s just no reason to! You are NOT alone. There are thousands of other Hodgkin’s survivors out there, all over the world. Our “tribe” gets bigger every day. There are many, many people who share your history. You might be surprised to find that there are survivors who have had almost the EXACT same experience that you have. It’s uncanny when it happens, but it happens quite often. At the very least, there are others who will hear your story with a sympathetic, caring ear because they’ve “been there.”

Those of us who have been at this for a while can tell you that we have taught each other a great deal. We have shared ideas, solutions, and sometimes life-saving information. We have held each other up when needed and we have celebrated even the most minor victories, knowing that this can be a difficult, unpredictable road to travel.

There are a number of Facebook support groups for Hodgkin’s survivors. Here are a few:

“Hodgkins’s International”

'“Living Life after Hodgkin's Lymphoma”

“Hodgkins Lymphoma/Disease Survival & Late Effects 1960 - early 2000's”

“Late Side Effects Cancer Survivors”

“Long Term Hodgkin’s Survivors”

Most of these Facebook groups are “private” and require that you provide a brief medical history when you request admission into the group. This is done for the protection of all members, as the sharing of medical information can have consequences. Additionally, some of these sites are designed to focus on a particular stage of survivorship.

In addition to Facebook sites, there are other support groups available to survivors. The American Cancer Society, the Leukemia and Lymphoma Society, and the National Coalition of Cancer Survivorship all have links to support groups for Hodgkin’s survivors.

Hodgkin’s International has its own Facebook site which is open to all. If you are interested in further information about finding a support group or just speaking with another survivor, please don’t hesitate to contact us through this website. We are here to help!

5. Live your life NOW

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Start with today. You can’t change what happened yesterday, or twenty years ago for that matter, and you can’t really know for certain what tomorrow will bring. Today, this moment, is the “one true thing”.

Many of us are still in shock that we’ve made it this far. Most of us are (understandably) terrified of what happens next. We’ve seen too much, read too much, and know too much to remain blissfully naive. Our cancer diagnosis and the collateral damage that it has caused have changed us forever. We will never be the same.

Just for the record, you have every right to be angry about having had Hodgkin’s. You didn’t do anything wrong. You didn’t deserve to have cancer. No one does. But….getting stuck in a hole of resentment and remorse will chip away at your life as surely as any other Late Effect will. Find someone you can talk to who will listen without judgement- a good friend, a therapist, or another survivor and “vent” away. Find a path to acceptance, optimism, and hope.

Cancer survivors often feel that they don’t get to “choose.”- that too many decisions are out of their hands. Here’s one thing we CAN choose- we can make a choice to live each day to the fullest, in whatever capacity we can. For some that may mean getting as far as the end of the driveway. For others it may be finishing a full day of work at a job that we love. Whatever a new day brings, we CAN choose to be fully present and accounted for, living each day as if it was a precious gift. And no one knows more than we do that it IS a gift, and that we have earned it. Through sheer determination and courage, we have EARNED it.

Keep moving, keep laughing, keep loving. “Hang tough” as they say. You’re a Hodgkin’s survivor. You are as tough as they come.