Voices of Hodgkin’s Blog
Voices of Hodgkin’s Blog
Voices of Hodgkin’s Blog

The Five Most Important Things to do as a Long-Term Survivor of Hodgkin’s lymphoma

By Erin Geddis Cummings

1. Know your history

If you’re a Hodgkin’s lymphoma survivor, it’s likely that you remember every detail of your medical journey. Whether it’s the surgeries, chemotherapy, infusions, or hospital stays, these experiences are often ingrained in your memory. However, as time goes on, these memories may become distorted or fade into the background of your everyday life.

That’s why it’s essential to gather as much information about your medical history as possible, particularly when it comes to treatment notes and copies of your medical records. This information is extremely valuable when you’re dealing with the late effects of your treatment.

For example, knowing exactly what areas of your body received radiation, what type of radiation, and how much radiation can help you understand your risk for future health problems, such as heart disease, lung issues, breast cancer, thyroid disease, infertility, and many others.

It’s a good idea to make a habit of requesting copies of your treatment notes and medical records whenever you see a doctor or are admitted to the hospital. Many healthcare facilities offer this information electronically through online patient portals, but if you were treated a long time ago, it might be more challenging to access this information.

If you were treated years or even decades ago, you may need to do some research or advocate for yourself to get your hospital to locate and release your records. However, it’s your right to request these records if they’re available, and even if there is a cost associated with obtaining copies, it’s well worth the investment in your future health.

2. Find a doctor or medical team that you trust

It is not easy to find a doctor or medical team that you trust, especially when dealing with late effects of Hodgkin’s treatment. Many survivors struggle to find a healthcare provider who listens, acknowledges the existence of late effects, and takes proactive measures to address potential health issues. It’s crucial to have a knowledgeable and attentive doctor or medical team that can anticipate and address health problems before they become life-threatening.

If you’re not getting the care you need from your current provider, it’s time to look for someone else. Don’t waste your energy fighting for someone to believe you, especially when energy is so precious for survivors. Do your research and find a provider with experience in cancer survivorship, not just oncology. Seek recommendations from others with a similar diagnosis and look into survivorship clinics in your area. If there are none nearby, reach out to the nearest survivorship clinic and ask for referrals. Check the names of providers at the clinic and see if they have affiliations with other hospitals or institutions that could help you.

3. Make a Survivorship Plan

It is vital for Hodgkin’s survivors without access to a specialized Survivorship Clinic to have a Survivorship Plan. This plan serves as a framework for ensuring optimal health and anticipating potential Late Effects. It includes a comprehensive medical history, a list of all surgeries and treatments received a record of vaccinations and prescriptions, and a schedule for future tests and procedures, such as mammograms, colonoscopies, pulmonary function tests, echocardiograms, and bone density tests. The frequency of these tests will depend on your personal treatment history and any prior health conditions, such as diabetes, high/low blood pressure, or cardiac issues. Regularly update your Survivorship Plan and ensure that all healthcare providers have a copy for reference.

4. Don’t go it alone

There’s no need to go through this alone. You’re not alone, with thousands of Hodgkin’s survivors around the world and a caring community that continues to grow. You might be surprised to find others who have had almost the exact same experience as you, and many who will listen sympathetically and understand. We’ve learned from each other, sharing information, ideas, and solutions, supporting each other through this journey.

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

Most of these groups are private and require a brief medical history for admission for the protection of members.

Other support options include the American Cancer Society, the Leukemia and Lymphoma Society, and the National Coalition For Cancer Survivorship, which all have links to support groups for Hodgkin’s survivors. If you need help finding a support group or just want to speak to another survivor, feel free to reach out through our website. We’re here to help!

5. Live your life NOW

Start with today. You can’t change what happened yesterday, or twenty years ago for that matter, and tomorrow is anything but certain.

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 judgment–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, and keep loving. “Hang tough” as they say. You’re a Hodgkin’s survivor. You are as tough as they come.

Please note: the thoughts and opinions expressed within the content are solely the author’s and do not necessarily reflect the the opinions and beliefs of Hodgkin’s International.