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?
First, let’s talk about anxiety. The definition of anxiety is “apprehensive uneasiness or nervousness usually over an impending or anticipated ill” (Merriam-Webster).
What happens when we are anxious? Our body responds. We go into “fight-or-flight” mode. Anxiety serves a very useful purpose when we sense a threat. It causes cortisol and adrenaline hormones to be released in our bodies, our heart beats faster so blood can flow to our muscles and away from organs so that we can run fast or defend ourselves. It is critical that we learn to recover quickly from “fight-or-flight” mode in order to prolong our health when a threat is not imminent. Long exposure to “fight-or-flight” hormones can cause inflammation and damage your health which is exactly what we are trying to escape.
So how do we stay informed without panicking?
Step 1: Stay in the Present
The secret is to STAY in the PRESENT. This sounds simple, but it is easier said than done.
Start by asking yourself: “What am I doing right now and how do I feel?” Awareness of your anxiety is the first step toward managing it.
If the answer is “ruminating about what-ifs,” check in and see if you are in “fight-or-flight” mode. Are you having trouble sleeping or feeling panicky? Is your breathing rapid and shallow? Is your heart rate elevated? Slow, deep belly breaths can help bring your heart rate down and help get you out of “fight-or-flight” mode. Describing what is happening around you right now (for example “it’s Tuesday, 1pm, May 3rd, I’m standing outside in…" etc.) can help nudge you into the present.
Step 2: Categorize late effects
The next step to remaining calm is to categorize your late effects. Here are some suggested categories:
1. Weird but manageable,
2. Weird and difficult to manage,
3. Life threatening but manageable,
4. Life threatening and really difficult to manage.
We may each have a different ranking depending on where we are in our late effect journey. That is to be expected.
In 2020, COVID-19 sent many of us into a state of high anxiety when, early on, it looked like it was a category 4 threat. Fortunately, now we have vaccines and treatments that bring it down to a category 1, 2 or even 3. But just like with COVID-19, each of us has our own level of comfort when categorizing our risk. So when something new pops up (a new pain, a skipped heartbeat or sudden dizziness, for example), instead of going into “fight-or-flight” panic, ask yourself the following:
1. “What am I doing right now?”
2. “Can I categorize this new thing?”
3. “Do I want to make an appointment or contact my doctor to get it checked out?”
Once I’ve chosen to take some sort of action, I move on. No need to live in “fight-or-flight” all day long.
Step 3: Find support
Having access to one or two medical providers who understand late effects (and know what to screen for) is crucial. It’s important to know that you have a comprehensive holistic care system and a team that has your back. There are two types of teams to consider:
MEDICAL: For long-term Hodgkin Lymphoma survivors, finding a survivorship clinic is ideal--yet, not everyone has access to one. That’s okay--a primary care physician (PCP) can be educated. If you have a PCP who is willing to learn about late effects, bring them a detailed copy of your medical history and a survivorship care plan. If you feel like they’re not responsive to your needs (or worse - dismissive or insulting), find a new doctor. You deserve the best possible care. Hodgkins International is here to help, and if you are having trouble finding medical support, please reach out.
EMOTIONAL: Talk therapy & connecting with other survivors can help you process a difficult diagnosis or overwhelming anxiety. Self-care--doing things that bring you pleasure--is also extremely important for emotional well-being. Having things to look forward to--a visit from a friend or family member, a vacation, an upcoming celebration--can all help to remind us to keep going when things get hard.
Step 4: Take control of what you can
For many of us, the loss of control over our health is a major source of anxiety. Late effects may or may not pop up at any time--like that Sword of Damocles--we can’t predict what or when. BUT there are some basic things we DO have control over that impact our health: food, exercise and sleep... and gratitude.
FOOD: As a long-term HL survivor, reducing inflammation that can harm our bodies, is a key to better health. Food can be a source of inflammation or a source of health. Certain nutrient-dense foods can actually combat inflammation. Your body deserves the best possible care. Ask your doctor about working with a nutritionist, or do some research online. There is a wealth of information about foods and good health.
EXERCISE: The cardiac benefits of exercise are indisputable. No, you don’t need to run a marathon (unless you are Erin…) but even 15 minutes of light exercise a day can be beneficial. Do what you can do safely and talk to your doctor if you have physical limitations.
SLEEP: If you’re reading an article on managing anxiety, you may also be experiencing insomnia. Lack of sleep is another cause of inflammation. There are many ways to manage insomnia. (Since my HL diagnosis I have been a horrible insomniac, so I’ve tried everything.)
Prescription sleep drugs can be helpful (just use with caution as some may be addictive). Exercise during the day can help (although some may need to run a marathon to sleep). Meditation, camomile tea, banning electronics in bed--there are so many techniques available for falling asleep--you can most certainly find something that works for you. If you are a parent who used bedtime routines to get your kids to sleep when they were little, try having a bedtime routine yourself as an adult. You can find apps with bedtime stories, guided meditations and sleep-inducing sounds online. The key is to keep to a regular bedtime and a routine each night that works for you.
GRATITUDE: Finally, finding things to be grateful for can relieve anxiety. It may seem corny, but if you find yourself spiraling into the depths of anxiety, stop for one minute and remind yourself of something(s) you are grateful for. Maybe it's a friend, family member, or a pet, or the weather or an accomplishment. Maybe its something you ate that was delicious. Remember to enjoy the little things.