Episode 248: . Understanding Scanxiety: How Caregivers Can Cope and Support Their Loved Ones
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Episode Transcript
I was talking with a caregiver the other day and we got on the topic of the anxiety they were feeling at the moment. They were new to the cancer world and their loved one had testing coming up soon. As they explained how they were feeling and how difficult it was for them to do everyday tasks because of it they said something important.
Am I the only one that feels this way?
Let’s talk about scanxeity
What is scanxiety?
Its a term many of us use to explain how we feel while waiting for an upcoming doctor’s visit or medical testing, during testing and as we wait to hear the results.
You don’t have to be a cancer caregiver to feel it. When any one of us has a loved one that has to have a medical appointment to check to see where they are, what they need and possibly have their treatment plan reassessed you can experience this.
In general it is a trying time and as a caregiver there is a heavy burden that can be attached to it.
You know that you’re feeling this if your anxiety levels become elevated around the time of scans, diagnostics and follow ups. You can find it hard to think or make decisions, restless, moodiness, trouble sleeping and trouble eating or over eating. You can also feel like your heart is racing, sweaty and or nauseous.
I personally found the weeks before my husband’s follow up scans to be some of the worse times of our cancer journey together in the beginning. First I didn’t realize what was happening. The stress levels we both were living with at that time were already through the roof. As we got closer to scheduled appointments I found myself withdrawing. It was hard to find joy in anything. I was easily irritated and reactionary. I didn’t have any energy so things like cooking felt extremely difficult. Overall I felt like crap, scared at my inability to function as an adult overwhelmed with extreme worry and angry that this would be a reoccurring scenario for the rest of our lives.
What made it worse was, I didn’t know other people felt this because I never shared it with anyone.
Why? Because I wasn’t the one with cancer and they weren’t my scans to take. Sound familiar? I was right there with all the other caregivers in the world dismissing my experience because I was quote unquote only the caregiver. I was the bystander just watching things happen while in the hospital with my husband. Sitting in the room with him while the CT scan pulled him in and out. Watching while he laid almost upside down for an hour with a tech pushing an ultrasound wand into his neck. It wasn’t happening to me… that’s what I told myself.
So I didn’t share how I felt with people around me. I also didn’t share it with my husband because I wanted to be the strong one of the two of us in these moments.
In the end the loneliness made these days scarier.
These periods of time in your caregiving life are impactful because the results could change your life and the life of the person you care for. You find yourself hoping, praying, wishing that they don’t find anything new as you sit in the waiting room. We all find our ways to cope but what I see looking back is that I didn’t always take the time to just sit with my husband. I spent a lot of time trying to distract myself which certainly changed my habits and patterns in the house and pulled me away from him. I found I became more easily irritated every little thing suddenly became a big problem and I was often in a spiral of what ifs while trying to pretend that everything was ok. What I wasn’t doing was enjoying time with him, living in the moment, or creating the space for both of us to support each other.
If I would have known that this was a normal reaction, that this was something others felt and experienced before these appointments it would have made it easier to handle how I felt. Sometimes being able to name what you’re going through helps you find a way to ease how it feels or at least validate what you’re going through.
If someone would have just said… ah man that time right before the scans is one of the worst right? Getting all anxious about the results, holding your breath until you get them. It can really ruin an entire month!
That’s what I hope to do here today. Let you know this is normal. Help you see how this anxiety might be affecting your life and give you ways to consider helping yourself and your loved one through it.
When my husband was diagnosed with cancer I was busy teaching yoga classes and my own yoga practice fell apart because of it. Becoming a caregiver just knocked all sense out of me and I instantly forgot how to care for myself. It took a long time for me to find my way back but once I did these moments of scanxiety were what showed me that my self-care was extremely important. It’s very important to have a plan on how you will deal with the way you feel when you have extremely anxious times as a caregiver. However, that should be your emergency plan that works off of your everyday plan. Your everyday self care is what will help you get through the more difficult times in your life. Having a holy shit back up plan plays off of things you already do. Resilience is built from practice… you can’t just find it at a moments notice.
Here are some things that can help when experience scanxiety.
1. Anticipate the shift - Most of the time we know when there will be another Drs app or set of scans or diagnostic testing. When you put that down in your calendar also work your way back at least a week and set a reminder for yourself to slow down. I know when I’m highly anxious it’s hard for me to make big decisions and sometimes even small ones. So I’ll put myself on a decision making ban. That also means everything becomes basic. Meals are the ones I can make without thinking. The refrigerator is stocked up before hand so grocery shopping isn’t an emotion based task. In fact, if I’m on my A game I have meals prepped ahead of time but that doesn’t always happen. If there is a decision that pops up during this week I assess if it can wait. Most times it can and I have no problem telling a person that I can’t make a decision on that matter until the following week. If it’s’ a now problem I will still take a day especially if it’s something that on a normal day could be made in the moment. It can be difficult on these days to make decisions that otherwise would feel easy and that’s ok.
2. Prepare for the day of scans (dinner, cleaning) - I know that when we come back from being at the hospital all day we will be exhausted. So I try to have things set up to make that re entry into our world easy. I’ll make sure the house it fairly clean. Especially make sure there isn’t anything to trip on or there aren’t dirty dishes in the sink. If I have the energy I’ll make sure there is an easy dinner plan for that day.
3. Take things slow/do less - Before and after these appointments I do as much as possible to not allow myself to be stressed out about things. I take things slow and do only the things that are necessary.
4. Do things that sooth my brain (re watch shows/ mindless/ soothing) - Find ways to distract. I do things that sooth my brain in my attempt to go slow at this time. That not only means keeping new decision making at a limit but also incorporating things that can help you stay calm and distract. That could look like re-watching tv shows you’ve already watched. Switch to reading an easy book instead of using social media. Allowing yourself to do things you might not normally do like take naps or even wear comfier clothing.
5. Indulge - One thing I love to do is take baths. I don’t take baths often so adding in something that feels like a treat but takes very little energy and is enjoyable at least once during this time can make more of a difference than you’d expect. It doesn’t have to be a bath but something that fits and feels the same as one would for you.
6. More walking - I find that walking helps me put things into perspective. It helps me think things through in a different way and it’s also a good way to walk with your loved one. Oftentimes when there are big conversations to be had or on topics that are emotional moving while having it makes it easier to have. You’re out in a different environment, together but both facing forward makes it easier to speak.
7. Laugh more - I know it can feel hard to do but laughing is a great stress reliever and if you can find the energy to laugh it can be of great help. Oftentimes my husband and I will watch a comedian on TV or we’ll be sillier in the days coming up to his scans. It isn’t easy but when you’re in the moment you realize that it feels so much better than how the stress makes you feel.
8. Be silly (sometimes forced so be weird) Which brings me to allowing yourself to be silly. I will walk into a room and find my husband deep in thought or possibly in a spiral of stress or anxiety all focused and based on having to go in for scans or Drs appointments. I always want to help him as best I can in these moments and if I’m too far into my own worries I can’t. So I take that as my cue to just be weird… which isn’t actually too hard to do. So I’ll do something or tell him a story that will at least make him smile. Some times I’ll have nothing and just give him a weird expression or basically just do anything weird that will make him laugh and take a break from what was going on in his head.
In doing this I also laugh with him. And laughing feels so good especially when you’re doing it alongside someone else. If you haven’t laughed in a while I highly recommend trying it.
9. Breathe - If there is one thing you take away from this episode it’s the next tip. Breathe. I’ve lead people in breathing exercise for over a decade in more than 3,000 yoga classes and meditation sessions. I know it works. I’ve seen the transformation happen right before my eyes in just minutes. A few minutes of deep breathing has the power to change how you feel and if done in a daily practice is really the key to finding the resilience you need as a caregiver. If you’re interested in learning more about this find my program Revive in 5 on the love your caregiving life website that teaches you 5 different types of breathing you can use for just 5 minutes at a time to alleviate the stress and anxiety that accumulates from caregiving. However, during a time of scanxiety it works to just simply take a few deep breaths. Even if it’s just 10 deep slow breaths in and out, especially if you really are having a hard time with anxiety in the days leading up to your loved one having scans or after while waiting for the results. Thing is, this can be done anywhere, at any time and no one has to know you’re doing it. But in the end you feel so much better.
10. Talk - talk to someone about your worries and fears. Tell them how waiting for scans is making you feel anxious or how stressful it is to wait for the results. Not everyone understands what scanxiety feels like or know that it even exists. Let them in to this part of your world especially if you are close with them and talk to them often. There’s no reason to hide how you feel on these weeks and it can make it easier for the other person to listen if you tell them you just want to vent and they don’t have to fix anything… just listen.
Talk to your loved one if you can. They probably want to hear how you’re feeling or would find relief in knowing that it makes you anxious to wait for these days to pass because it gives them an opportunity to share with you how they feel.
Or just say the words. Sometimes you just have to hear the thoughts and feeling come out. Sometimes you have to let them out so they don’t feel so oppressive or so you don’t let them grow out of control. Of course having a therapist to speak to is always good but just having a conversation with yourself if someone else isn’t available is also good. Sure it might feel weird. You can always record into your phone so that way it feels like you’re leaving a message or speaking to someone on the other side. I know some people journal and that’s great if you like to do that… however hearing what you are thinking really changes the perspective.
Being a caregiver highlights how very little control we have over things in our lives. You don’t have control over the scans coming up or the results but you do have control of how you allow them to affect your life.
Keeping in mind that this is a normal reaction to the additional stressor of tests and Drs visits looming in the future and having a plan on how to address how your mood, energy and life is affected by these times is helpful.
Scanxiety is real… it’s a valid reason to make changes that prioritize your own care, Try just one and see what works for you.
Thanks for listening.
