On Ash Wednesday, February 26, 2020, two months after my thirty-nineth birthday, I became a cancer patient. My husband and I went to my doctor to get the results of some scans I had the previous week. She said the words you never want to hear: it’s a mass, and it doesn’t look good.
Up to that point, I had never had a major health issue and neither had anyone in my immediate family. I had just trained for a half marathon that I was supposed to run in December, but I ended up having to skip the race because of an ankle injury from martial arts. The day after my “Ash Wednesday” appointment, we sat in the waiting room of the oncologist’s office, blindsided by all of this. The oncologist asked if I was available for surgery next Wednesday. We cleared our calendar.
Mine was a rare disease, one that can hit anyone—male or female—at any age, and it has been observed in countries with very different lifestyles and diet. I was diagnosed with appendix cancer that was found after it had spread to my ovary. It turns out the slow-growing cancer had spread mucin throughout my abdomen (also called pseudomyxoma peritonei). According to my oncologist, the extent of the mucin indicated that this had probably been spreading silently for most of my thirties, a time when I had assumed I was in excellent health.
Within my lifetime, appendix cancer has gone from being a disease with a poor prognosis to being manageable and even treatable in some cases. As of this writing, I have been four-and-a-half years with “no evidence of disease,” which is the best doctors can say when you have a difficult-to-detect cancer that has spread. Often, appendix cancer comes back, but because mine was “low-grade,” meaning slow growing, I will only need annual bloodwork and scans. Lord willing, after this year, we can change to every-other-year scans, but because of the nature of this cancer, I will have to monitor it for the rest of my life.
It was with interest that I read a January New York Times headline that said cancer’s new face is younger and female. This is particularly the case of colon cancers and breast cancers.
However, more people are surviving cancer thanks to better detection and treatments, which also means these young adult and middle-aged cancer survivors will have specific needs that are different from the older person who is post-cancer. One obvious need is support. People in their 60s have either encountered cancer themselves or have had a friend or loved one with cancer. In my case, my peers did not always know what to do, and because my treatment was concurrent with Covid, most of them were busy navigating the disruption in their own families’ lives.
As this demographic grows, pastors and church ministers will likely have young and middle-aged cancer and post-cancer patients in their congregations, which drives the question for this article: What can the church do to support this growing sub-population of younger people with cancer and their caregivers?
My husband, my pastor, and I have all provided some ideas based on our experience with cancer.
What I Wish People at Church Knew
My husband and I called the cancer journey “going to Mordor,” from J.R.R. Tolkien’s The Lord of Rings. Frodo and Sam had to make their way through Mordor because Frodo was chosen to carry the ring of power through this hellscape to destroy it. The rest of their friends journeyed through Middle Earth, fighting battles and staving off the forces of evil.
The beginning of our “Mordor cancer journey” was marked by each procedure being worse than the last and each test result coming back with the results we didn’t want. Aside from the physical and emotional exhaustion, our experience was like Frodo and Sam in another way too. We had to do this. Yes, we had support through meals, prayer, and cards, but no one else could carry the “cancer ring.” For whatever reason, I was one of the 3-in-every-million Americans to get this disease, and David had to come with me into the alternative universe that cancer patients enter while everyone else lived their lives and fought their own battles, albeit during a pandemic.
There’s another way our journey was like Tolkien’s story. Frodo and Sam finally made it back to The Shire after enduring Mordor, but they were not the same. Frodo had to live with the physical and mental scars of his journey. Similarly, for me and many other people who have dealt with cancer, there’s “during cancer” and there’s “life after cancer.” Being in the middle of a traumatic situation requires a different kind of support than living in its aftermath. During cancer everyone is attentive and checking in with you. Afterwards, particularly if your physical scars are hidden, people assume you’re fine. In reality, while I genuinely believe every day is a gift, it doesn’t always feel that way.
How to Encourage Someone During Cancer
Because some cancers are avoidable with the right lifestyle choices or environment, there is a sense that all cancers must be avoidable. In our culture, cancer is sometimes viewed as a modern equivalent of the story in John 9 when the people, upon seeing a man who had been blind since birth asked, “Who sinned, this man or his parents, that he was born blind?” Jesus responds that it was neither the man nor his parents, but that the works of God might be displayed in him (John 9:2–3, ESV). The point of the man’s blindness was not a consequence of a specific sin, but his blindness, and Jesus’s subsequent healing, was part of a larger story than that of the immediate circumstances.
I understand the impetus behind the desire to find a cause for someone’s suffering. Many people are terrified of cancer. I was. Certainly, cancers that have no known cause are terrifying, but something I didn’t know, and what I wish fellow believers knew, is just how gracious God is to believers during difficult times. God gives extra measures of grace, strength, and resilience just when they are needed. I don’t want to imply that God takes away pain or always heals cancer on this side of Heaven, but going through cancer was eye-opening. As Amy Low has written in The Brave In-Between: Notes from the Last Room, we are part of God’s bigger story.[1]
Related to this, well-meaning people would sometimes recommend eating certain foods, taking certain vitamins, or drinking certain concoctions. Whether they meant it or not, it felt like they were implying I needed to change, or that my own efforts could keep the cancer at bay. Sometimes the recommendations would have hindered the chemo drugs or been too difficult on my system. Without meaning to, this kind of thing can make a person with cancer feel like there was something they could have done better, even though, at least with the cancer I had, there really was not.
Instead of trying to help by recommending something, offer to pray for the person going through cancer and send them a note of encouragement when you do pray. There were times when I was too tired, upset, or in too much pain to pray. I cannot tell you how much it encouraged me during some of the worst times to know there were people praying for me.
How to Encourage Someone Post-Cancer
Every summer, for one day, I am a cancer patient again. I go to the cancer center, get a CT scan, provide as much blood as they can squeeze from my arm (3 or 4 vials), and visit my medical oncologist and my surgical oncologist to discuss what they saw in the scans. In the days and weeks leading up to this, my head becomes muddled, and I have trouble keeping track of things. I catastrophize more and sleep less. Some people call this “scanxiety.”
I will be honest; I hate the word “scanxiety” because it’s too cutesy. We should just call it what it is. It’s post-traumatic stress. I don’t want to be a downer, but every person who is post-cancer will experience PTSD of some kind, be it depression or acedia, or flashbacks and anxiety, or any number of responses. PTSD is not just when people have annual scans; non-cancer related doctor’s visits, being home alone, or anniversaries of cancer milestones can trigger the brain fog and distorted thinking that comes with PTSD.
Everyone’s experience with PTSD is different. I’m a high-strung person, so anxiety isn’t unfamiliar to me, but this anxiety, the PTSD-induced kind, is different. We expected that I would have some post-cancer struggles because I was in the hospital alone during a particularly severe Covid wave in 2020 after a final extensive surgery that included a mega-dose of chemo. What we didn’t expect was that the PTSD wouldn’t kick in until over a year after treatment was done. After the initial elation of being done with cancer treatment, which was followed by a deep fatigue and processing what we went through, PTSD came sometime later. For me, it was off-and-on for 2 years, and at times it can still rear its ugly head.
When I read accounts of soldiers experiencing PTSD after being in combat, I related to what they were saying. I don’t want to suggest being on the battlefield or seeing someone you know die beside you is anything like going through cancer during a pandemic. Yet, the dissociation, the edginess, the inability to be alone, those were all familiar.
There’s a flip side, just like when two veterans meet each other, even decades after serving—people who have gone through cancer have an unspoken bond. This is where people can show those who are post cancer the grace they need when the anxiety knot tightens, the world has a dark cloud over it, and all your relationships seem fragile and distorted. Even if you have not been through cancer, it is important to show grace toward those who are struggling.
What a Caregiver Wishes the Church Knew
I asked my husband, David, what he wishes people in the church knew from the caregiver’s perspective, particularly someone who did not expect to be a caregiver at such a young age. Here is what he told me:
First, people going through a serious medical crisis need help, but they usually don’t know how to ask or what to ask for; and sometimes they don’t even know they need help. I had spent most of my adult life learning to be independent, so needing help felt like a weakness or something to be ashamed of. I had to learn to accept help from others, and to realize that it was often both a blessing to the giver and to the receiver. We have aphorisms and sayings that express this, but I didn’t really believe them or understand them.
Here is some practical advice: As you reach out to a person or their caregiver, be patient. Make a concrete, specific offer and follow through with it. Vague promises or general assistance don’t really register with someone going through the fog and stress of a medical crisis. For example, I had a colleague at work say “I am going to bring you dinner on Thursday. How does a homemade Bolognese sound?” This was exactly what I needed. Many offers of “Let us know what you need,” while wonderful, were non-specific, and I could not articulate what I needed in a way that helped the person making the offer help me.
Second, you can keep checking in. It’s okay if a visit, text message, or phone call is brief. In fact, it’s probably better that way. Any short meaningful contact is an encouragement. Before our crisis, I would often talk myself out of a visit or phone call. “It would take too long.” “They’re probably tired.” “What do I even say?” Now I know. A short hospital visit is almost always better. Call the caregiver ahead of time and pop in for fifteen minutes. You don’t want to stay all day, and they don’t need you to (especially if the nurses are doing something embarrassing!). A short message letting someone know that you prayed for them is better than a Hallmark card you had to buy at the store.
Finally, keep it up! This is the hardest part because as illnesses drag on everyone gets tired, but caregivers, especially, might need help or a break several weeks down the road after the initial rush of assistance has tapered off. Sometimes there are months or years between significant doctor visits or scans and your check-ins or offers of help might be just what is needed at a time of apparent loneliness.
What I Wish I Knew When I Was a Younger Pastor
My pastor was incredibly attentive while I was going through cancer. And every year when my annual scans come around, he is sure to pray for me and check in to find out the results. At my first one-year scans, I told him over text that it was nerve-wracking because appendix cancer is the kind that can come back. He replied that he is sorry I have to live with this “Sword of Damocles” over my head. That was such a good analogy. I greatly appreciated his ability to provide the right word-picture for the situation.
I asked him if he would answer two questions for this article: (1) What do you wish you had known about caring for cancer patients in your congregation when you first started out as a pastor? And (2) What advice would you give to a pastor ministering to people with cancer, especially younger people with cancer?
Here are his answers:
I wish I would have known (understood) that I don’t have to have “all the answers.”
I definitely felt the pressure to know “all the answers” when I began ministry, largely because I am (and always have been) insecure about my ministry abilities.[2] So, I felt this pressure that it was my duty and responsibility as a pastor to have all the answers for people.
This raises a dilemma because there is a grain of truth in this. As an officer of Christ’s church, I am Christ’s servant with a calling to know and communicate biblical truth as it relates to specific circumstances. People should be able to go to a pastor to find answers to the big questions of life, and the pastor should be able to give definitive answers to those questions from God’s Word. However, with all that said, there is always the danger of becoming like one of Job’s counselors. Job’s counselors had correct “doctrine” in their answers, but they were far off base in rightly applying that doctrine to Job’s situation. I always face the same danger as a pastor, so I must have humility when considering the situations people face in life. There are far too many things that I DON’T know which should keep me humble!
Point them to a mature believer who has gone through the same experience.
I have found this is one way that the entire body of the church should be utilized. God tells us in 2 Corinthians 1:3-4:
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
God has equipped the body of Christ to minister to each other. The pastor is not the one who does “all” the ministry. The leaders of the church are the “equippers” of the saints (Eph 4:11–12), but it is the saints who are largely active in the actual ministry to each other. God has equipped each member with gifts to serve the body (Rom 12; 1 Cor 12; 1 Peter 4, etc.). But it is clear from 2 Corinthians 1:3–4 that God has also equipped members of the church with experiences which serve the body of Christ.
God brings a believer through the affliction of cancer by His power, comfort and grace so that the believer may in turn comfort others in their affliction with the same comfort he (or she) has received from God. The person who has gone through the deep affliction of cancer has a unique experience that can really help another believer who is going through the same thing. And that person can do it in a much better way than a pastor who has never gone through it himself.
Final Thoughts
In another article, I tried to write about the lasting effects of having gone through cancer during the pandemic. Like Frodo and Sam at the end of Lord of the Rings, my husband and I can’t go back to “The Shire” and to the way it was before, because we cannot return to the place of innocence when death was distant and abstract. Every occasion now has a shadow over it, and paradoxically now so many things bring us joy.
Notes
[1] Amy Low, “A Journey Complete,” Postcards from the Mountain, December 2, 2024, https://amylow.substack.com/p/a-journey-complete.
[2] So many people at my church have expressed how thankful they are for his many years of faithfully shepherding us well. –HZ