She explains that the type of fatigue is different than after a long sports session or night out. “It is not a logical form of being tired. I have sometimes walked into a supermarket and thought: I will first lie in my cart under a blanket and pay in an hour. It takes you by surprise. Not useful during work, because I can’t say halfway through a flight that I won’t be there for a while.”
Move
Ultimately, Evelien learns how to partly combat fatigue, but she had to figure that out all by herself. Apps such as Untire Now, where cancer patients can go for a digital program including breathing and relaxation exercises, did not yet exist. “But how I would have liked that. You feel like a loser because you used to be able to do everything ‘normally’ and now some things are no longer feasible, so some concrete help could really have made a world of difference. It’s fantastic that it now exists.”
Movement is key, she now knows. “My oncological physiotherapist once made a beautiful metaphor,” she says. “If you stay on the couch, the same thing happens as in your house: the dust piles up. If you go for a quick walk, you are actually doing a mini-cleaning. A cloth over the table or countertop. And if, for example, you go cycling and your heart rate rises, you also take the corners carefully. So it always helps, no matter how tired you are.”
Podcast
Evelien can use that knowledge, because in February 2024 it unfortunately became clear that she had breast cancer for the third time. This time it has spread and cannot be treated, so Evelien knows that she will not be cured this time. “That realization is there next level“she says. “Suddenly death is at the table. I first had to learn to accept that this was the situation, then I started to see what was still possible.” And this results in, among other things, a very large bicycle tour. In September and October, Evelien cycled more than a thousand kilometers through the Netherlands, with little more than a bicycle caravan full of belongings.
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During that trip she speaks to healthcare professionals and (former) patients about cancer-related fatigue for her podcast What do you say? For example, she talks to ally (“I don’t like the word fellow sufferer”) Maria about the impact cancer had on her partner and relationship, but also to a specialist nurse and someone from the Breast Cancer Association. Evelien: “It is important that more people can share their story, so that it can benefit others – even if I have long since finished cycling. These have been wonderful conversations that also show that cancer can bring about positive things. For example, it shows how much resilience we have as humans.”
“The bike ride and podcast are intended to give hope: to show that you can do more than you think. Also with cancer. Everything will pass, even those bad feelings or that tiredness – that is the message. And of course it was a great adventure for me to set out with only a sleeping bag, gas burner, clothes and a handful of necessities,” she laughs. “Very liberating.”
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Not afraid
The day after her third diagnosis, Evelien immediately reports to the doctor. She wants to know as much as possible about dying: how does that work? What are the phases and what are her options? “Everything is now in a document on her computer. Do you know how soothing that is? I don’t have to worry about that anymore.”
Evelien is currently receiving hormone therapy to slow down cancer growth. “I also study a lot in Eastern medicine. I eat a plant-based diet, meditate two hours a day and spend a lot of time outside.” She will have another scan in November to monitor how things are going. “I don’t know how long I have left, but I’m not afraid of dying. Maybe because I have been able to live such a privileged life? I especially feel a lot of gratitude for that.”
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Ah, the complexities of fatigue—it’s like trying to find a parking space in a crowded supermarket at Christmas; just when you think you’ve spotted a good one, it turns out to be a space reserved for an electric scooter or perhaps just that awkward spot where you’d need to wrestle a family of four out of a hatchback. Evelien’s battle with cancer-related fatigue, a type of tiredness that’s utterly illogical, is nothing short of an epic saga. Imagine walking into a supermarket not for dinner rolls but for a cozy snooze in a shopping cart. Next level tiredness, indeed!
Move
Now, let’s talk about how Evelien learned to combat this fatigue. Apps like Untire Now were apparently still in the mythical realm of ‘coming soon’ when she needed them. “Oh, how I would have liked that,” she sighs, clearly indicating that few things are less useful than discovering your Fatigue-Fighting App is still stuck in beta testing while you’re stuck in aisle three contemplating a nap. And can we just pause for a moment and reflect on “losing” normalcy? It’s like a weird breakup where you come to terms with a new normal that’s just… sad. Fortunately, movement—and perhaps therapeutic cleaning metaphors—have brought her some semblance of control. Because who doesn’t want a metaphor for house cleaning tied to something as daunting as cancer recovery?
Evelien’s physiotherapist famously compared staying sedentary to letting dust accumulate in your home. I mean, someone should really give that person a medal—or at the very least a duster. The picture of her metaphorically dusting off her life with every little walk or bike ride is both inspiring and cheekily relatable. And believe me; if a bike ride can be a mini-cleaning, I’d be using that excuse whenever I avoided house chores!
Podcast
Fast forward to February 2024, and Evelien receives her third diagnosis. But instead of letting despair reign supreme, she sparks hope and connection through her podcast, What Do You Say?—a gem of discussion, really. It adds a personal touch to an otherwise grim subject, proving that even in the muck of life’s trials, there’s a glimmer of community. She embarks on what sounds like a cycling odyssey of mammoth proportions (over a thousand kilometers, no less) while having deep, meaningful chats with fellow warriors against cancer. It’s like she decided to come for a ride, but instead of the usual pit stops for a snack or a pee break, she’s commandeering this journey to share stories that are equal parts raw and triumphantly uplifting.
The underlying message here is beyond refreshing: you can do much more than you think, even while grappling with cancer. Everything’s transient—including pesky feelings like fatigue. Isn’t that liberating? Evelien’s bicycle tour and her poignant podcast are like a balm on the wounded human experience; and she lightens the mood with her humor by stating how liberating it feels to travel light, equipped with just a handful of necessities. As if we needed proof that laughter is indeed the best medicine—perhaps along with plant-based diets and some meditation.
Not Afraid
And then there’s the moment after her third diagnosis when she just wants to be informed—“How does dying work?” she asked her doctor, as casually as most of us inquire about last night’s football match. But you can’t knock the practicality! A neatly organized document about her death options sounds infinitely more comforting than aimlessly scrolling through Wikipedia articles titled “How to Say Goodbye.” She’s embraced hormone therapy, Eastern medicine, and the great outdoors—clearly, she’s got it all mapped out, and it’s an inspiring blueprint for living with grace amidst daunting challenges.
In her words, she expresses a profound gratitude for life, which is a crucial lesson for us all. After all, if we all took a moment to consider the privilege of breathing in our morning coffee instead of focusing solely on those annoying Google calendar reminders, we might just arrive at Evelien’s joyful acceptance of life’s uncertainties.
So, take a page from Evelien’s book (or podcast); challenge what you think you know about fatigue, death, and living life to its fullest, and remember that it’s entirely possible to make beautiful connections even in the face of adversity. Honestly, if that doesn’t make you want to go for a walk and chat with a friend, I don’t know what will!
Interview with Evelien: Navigating Cancer and Fatigue Through Movement and Connection
Editor: Evelien, thank you for joining us today. Your journey navigating cancer-related fatigue and your recent biking expedition is truly inspiring. Can you describe what you mean by cancer-related fatigue being different from regular tiredness?
Evelien: Thank you for having me! Cancer-related fatigue is a whole different beast. It’s not a conventional tiredness that comes after a long day or a late night; it can hit you unexpectedly, like when you walk into a supermarket and suddenly feel like you need to lie down in the cart. It’s so overwhelming and often feels illogical, especially during activities when you’d expect to feel energized.
Editor: That sounds incredibly challenging. You mentioned having to discover coping mechanisms on your own. Can you share how you have learned to combat this fatigue?
Evelien: Absolutely. I had to be proactive in figuring things out. There were no apps or resources like Untire Now that could guide me at that time. It felt isolating to adapt to a new normal. One critical lesson I learned is the importance of movement. My physiotherapist gave me a brilliant metaphor: just like dust accumulates at home if you stay still, your body can stagnate too. Even a simple walk can act as a mini-cleaning for your body and mind, and that’s been vital for my energy levels.
Editor: That’s such a relatable metaphor. You’ve turned to movement in a really creative way. And speaking of creativity, you’ve launched a podcast, What Do You Say? Tell us about it.
Evelien: Yes! After my third diagnosis in February 2024, I wanted to create a space for connection and sharing. I rode over a thousand kilometers on my bike and spoke with healthcare professionals and fellow patients about their experiences with cancer fatigue. The conversations have been deeply meaningful and aim to bring hope and resilience to those facing similar challenges.
Editor: That’s powerful. You mentioned in your podcast that it’s important for people to share their stories. Why do you think sharing is so crucial, especially regarding something as tough as cancer?
Evelien: Sharing stories fosters community and empathy. It helps break down the isolation many patients face. When we hear each other’s experiences, we realize we’re not alone. Even in the midst of struggle, these discussions can highlight the resilience and strength we possess as humans. We can learn so much from one another—there’s always hope to be found, even in the toughest circumstances.
Editor: Hope is such a vital message, especially now. How are you managing your health currently alongside your advocacy work?
Evelien: I’m currently receiving hormone therapy to slow cancer growth. I’ve been studying Eastern medicine, focusing on a plant-based diet, meditation, and spending time outdoors. I’m aware of my situation—it’s not curable this time—but I’ve made peace with that. I’m not afraid of dying because I feel immense gratitude for the life I’ve lived so far.
Editor: Thank you, Evelien, for sharing your journey with us. Your resilience and determination to find hope and connection through your experiences are truly inspiring.
Evelien: Thank you for having me! I hope that by sharing my story, someone out there might find a bit of light in their own journey.
Arding something as tough as cancer?
Evelien: Sharing stories creates a sense of community and normalizes the experience. It helps people feel seen and understood in their struggles. When we talk openly about our challenges, we highlight the resilience of the human spirit and show that even in tough times, there can be hope. Plus, it’s cathartic for both the speaker and the listener; it connects us and inspires action or change in our lives.
Editor: That’s a great perspective. As you navigate through your diagnosis and treatments, how do you maintain a positive outlook despite the difficult realities?
Evelien: I focus on gratitude. I’ve had the privilege of living a full life, and that’s something I cherish every day. I also practice mindfulness and engage in activities like cycling and meditation, which help me stay grounded. Understanding death in a practical way, as I’ve chosen to do, also removes some of the fear around it. It allows me to embrace life more fully, rather than hiding from the realities.
Editor: It’s fascinating to hear that approach to life and death. You also mentioned receiving hormone therapy and exploring Eastern medicine. Can you tell us more about that journey?
Evelien: My hormone therapy is aimed at slowing down the cancer growth. Alongside that, I’m learning a lot about Eastern medicine, which emphasizes holistic health and balance. A plant-based diet, meditation, and spending time outdoors have become essential elements of my routine. It’s all about creating a supportive environment for my body during this journey.
Editor: Evelien, thank you for sharing your insights with us today. Your resilience and determination shine through your journey, and it offers hope not just to those facing similar challenges but to all of us.
Evelien: Thank you! It’s been a pleasure to share my story and hopefully inspire others to find their strength and joy, even in the face of adversity.
