Life & Health

Contemplating Chemotherapy: Round 5 – What You Say vs. What I Hear with Chemo/Grief

December 21, 2016

I have been wanting to write a post along these lines for some time now, but I figured now would be a good time to post in light of the holidays. Christmas is often a time to visit and spend time with family, and while all the advertisements become sentimental and fill our imaginations with dreams of a wonderful time for catching up and setting aside differences to love each other and enjoy the season together, we all know that more often than not it really is hard to spend extended time with people that we don’t keep up with very much (and sometimes would rather not spend much time with at all). On top of that, the holidays can be a very difficult time for people who have experienced some type of loss – either the loss of a loved one and the accompanying grief with that loss, or the loss of their own health in some way that limits their ability to enjoy all the festivities.

I’m in the unique position of being in both of these two categories: this is the first Christmas without my older sister, Christina, who died recently, and I just started round 5 of my chemo on Monday – so I’ll probably be feeling the full effects of that during most of this Christmas. This will also be the first time my whole family has gotten back together since Christina’s funeral, and we will all be in Houston together at my brother-in-law’s house, which is also near MD Anderson, where all this chemo stuff started. So I’ve been partly dreading this next week and partly looking forward to the time – not really knowing what to expect, exactly. I imagine it will be messy, with hard times that are still good, and happy times that are still tainted with sadness and loss. There will be meaningful conversations and also probably some disagreements or things said that we’ll probably regret later.

In light of all these things swirling about in my head – I thought it might be helpful to share my own experience of interacting with people in light of both my chemo and my grief around the loss of my sister (and dad). Sort of a “What You Say” vs. “What I Hear” post in light of both chemo and grief. My hope in writing and posting this is to help people understand in some way a little bit of what is going on in the minds and hearts of people who have experienced grief or the loss of their health recently. That way perhaps this can make some of those awkward conversations more meaningful and lasting during the holidays, or at least give you some insight into what your friends and family may not be comfortable telling you.


Disclaimer(s)

Before I start, I should make a couple of disclaimers:

  1. I am not claiming that I understand everyone’s loss or that this is how everyone hears what you are saying or asking in light of their varied situations. This is only my experience. Ironically, I’ve found that things said to me that were not helpful were very helpful for others, and vice versa. I’ve even found that things that helped me through grief with my dad are not so helpful in dealing with grief over my sister, and chemo is a totally different experience. So please don’t take this as canon law for interacting with people who are dealing with the loss of their health or loved ones. Everyone is different and every relationship is different.
  2. Inevitably, some of the things I write about in this post you may have already said to me without realizing they were not helpful, and possibly were hurtful. That’s OK. Please don’t feel bad about having said them. I honestly cannot think of a single person who has intentionally said something to hurt me during this time, and I know that most of what has been said to me has been with the explicit intention of being helpful and caring and loving. I’m not writing this to shame anyone at all, but rather to help people better interact with hurting people in light of my own experience.
  3. Even after reading this, you’ll probably say “the wrong thing” to someone again. That’s OK. I still do too. I probably will say “the wrong thing” this Christmas to numerous people. My hope is not to teach you to say “the right thing” only from now on – but rather to lift the veil and help you try to understand how people can mishear what you say, or how it can have an entirely different effect than you intended. This, like all relationships, takes patience and a willingness to ask for forgiveness and be wrong sometimes, even if you didn’t intend anything bad by what you said. Please don’t be afraid to say anything because you think you’ll say “the wrong thing” to someone – as I’ll share below, sometimes the most hurtful thing is when people don’t even try to talk to you or interact with you for fear of saying “the wrong thing.”

Ok… now on to the post. I’ll start with chemo, then end with grief. I thought about doing two separate posts for each category, but I’ve been surprised by how similar the two are, and thought that might be helpful for people to see. Also, I should share that part of my inspiration to write this was in light of this post about cancer and this post and this video about grief.

“What You Say” vs. “What I Hear” on Chemo

What you say: “How are you doing/feeling?

What I hearThis always brings up the debate in my mind: “Is this just the typical American greeting that I’m supposed to respond with: “Good, how are you?” Do they really want to know how I am really feeling? Are they asking this because they feel like it’s their duty to ask me?” Most of the time it feels like people are asking for a progress update, so I feel compelled to tell them a brief, encouraging: “Oh, chemo’s not that bad and it’s shrinking the tumor, and I’m doing as well as could be expected, mostly I’m tired a lot – so thanks for praying!” But sometimes I just want to say, “Chemo sucks, and I’m exhausted all the time and feel like crap, but I have to put on a pretty face because people get awkward when I say things aren’t going so great, and I’m an introvert and I desire to be seen as normal in public, not pitiable chemo-boy. How are you?” I’m sure that will go over well. Actually, I have said something similar to some people – mostly close friends/family. This question probably will never be easy, and probably won’t go away – and that’s OK. I usually try to be honest, but also gauge what people are expecting in response (and, I’m often wrong – sorry!) As a tip, you can take the initiative and say: “How are you really doing? And feel free to say ‘crappy’ or ‘not good.’ I really want to know.” Just be prepared to hear me unload on you.

What you say: You’re looking good, Jason!”

What I hearThis is another thing that people say with the best of intentions, trying to encourage me about the fact that I look somewhat normal even though I’m going through chemo. My oncologist said it to me on Monday, and I think he really meant to be encouraging – and I took it that way. The hard thing is, that it can often be surface level, and almost awkward to contradict. It almost imposes on me that if I “look good” then I must “feel good.” Unfortunately, that is not always the case. So I feel weird saying, “well, I don’t feel good right now.” This is one of the difficulties of dealing with an internal health problem, where much of the pain and symptoms aren’t visible to others. I was talking to my good friend a while back (who is a paraplegic and has to get around on crutches) about how a visible disability and an invisible disability can make people expect different things from people. In his case, since they can see that he is disabled, they often expect less from him and reward him for doing things that they expect from everyone else. For example, he has a handicapped parking tag, so if he parks poorly in that spot, he’ll often jokingly say, “Ah, they’ll see that I’m handicapped and think I couldn’t do any better.” But in my case, I can “look good” but inside feel really terrible, and no one would know the difference – so they expect me to act as I look. So telling me I look good sometimes almost implicitly denies me the ability to contradict that statement. It assumes that the surface tells the full story – and, unfortunately, it does not always do so.

What you say: “You’re so brave/inspiring, Jason!

What I hearYou are trying to encourage me, but without thinking about it you’re putting me on a pedestal that I don’t belong on. Sometimes I wonder if people think that my situation was like the Hunger Games and I shot up and said, “I volunteer as tribute!” As if God was handing out shitty diseases like FAP and colon cancer (heh, see what I did there?) and my family stood up and sacrificially said, “We’ll take this genetic disease – have no fear thou simple peasants, we’ll bear this burden for you!” I didn’t choose this. I didn’t choose FAP, and I didn’t volunteer for these tumors or chemo. I didn’t bravely step up so others wouldn’t have to deal with this pain. I don’t see myself like Job, where God was looking around for some super Christian and he thought, “You know that Jason, I think he’s pretty special and can handle a few tumors and chemo. That’ll be inspiring to others.” This is part of the broken and fallen world we live in because of sin. I don’t feel very brave or inspiring. Part of me just wants to be normal, not special. Now, God has definitely given me a lot more courage and peace than I expected – but it wasn’t because I somehow had a special surplus of it that he gave me FAP and chemo. I’m just like you, with the same fears and faults and failures. Please don’t put me on a pedestal and assume that I somehow am brave enough for God to “entrust” me with these difficulties. I’m glad what I’ve written or said or done has encouraged you, but I’m no hero – and I’m certainly not a saint. As Flannery O’Connor said of one of her characters in her short story A Temple of the Holy Ghost, “[I] could never be a saint, but [I] could be a martyr if they killed [me] real quick.”

What you say: “[Nothing about your own pain or struggles]

What I hearYou think that because I’m going through chemo that somehow you can’t talk about difficult things in your life, no matter how big or small. As if the cancer/chemo card trumps all other struggles in your life, and you’re insulting me by bringing up a “petty trial” compared with chemo/cancer. That is absolutely not true. I remember talking with someone about how hard it was for them to wait for an adoption and the struggle of the birth-mother deciding to keep her baby – and then all of a sudden they stopped and said something to the effect of: “I know this is nothing compared with what you’re going through.” My response was, “That doesn’t make it any less difficult.” Please don’t feel like you can’t talk about hard things around me because you think it doesn’t compare with what I’ve gone through. This isn’t the one-up game for trials and struggles, where we try to figure out who really has it worse than the other. Each person’s pain and struggles are not things to be compared and ignored because one seems worse than the other. Your pain and struggle are real, and just as valid as mine. I have no idea what it’s like to deal with a miscarriage, or wayward child, or divorce, or specific work problems, or any number of other emotionally, spiritually, or physically difficult things – but that doesn’t mean they aren’t valid and painful for you.

What you say: “I know exactly how you feel.

What I hearYou’re trying to identify/sympathize with me, but you’re actually saying you get something that you have not experienced. There is a BIG difference between saying. “I identify with you at some level because of this or that” and saying “I know exactly how you feel.” Because, let’s be honest, you don’t. And I don’t know exactly how you feel, either. So please don’t pretend to understand something you don’t understand. One of the big places this comes up is when I say, “I’m tired” or “I didn’t sleep well last night” and someone goes, “Yeah, neither did I” or “I’m tired too.” No, actually you don’t understand what I mean when I say “tired.” Chemo tired is something completely different from not sleeping a full 8 hours at night. It’s a constant exhaustion that doesn’t go away, and I couldn’t have described it until experiencing it myself. On top of that, I often wake up every hour or two during the night to go to the bathroom because I have no colon – so if I have a night where I only wake up once, then I consider that a great night of sleep. If you tell me you have a newborn and haven’t slept in days, then perhaps you understand what it’s like – but waking up a time or two is not the same thing. I appreciate when people tell me they identify with me or are trying to relate what I’m experiencing to something they have experienced (pregnancy, is ironically one of the primary things that is similar to chemo, I’m finding) – but please don’t say you know exactly what I’m going through right now.

What you say: “[Nothing]

What I hearSometimes this can be welcomed since I’m an introvert. Sometimes it’s just easier to avoid talking about it altogether. But saying nothing at all to me can be very painful too – especially if you’re someone I care about. One of the most painful experiences I’ve ever gone through was having a dear friend not visit me (or even call me at all) when I was in the hospital after surgery. I know it was a difficult situation and that they were afraid of saying something wrong or miscommunicating – but their silence hurt worse than anything they could have said. I still feel that deep scar to this day. In the same way, some of the most encouraging things were when people just showed up to visit even if they had no idea what to say. It’s OK to say, “I don’t know what to say.” Nine times out of ten that’s better than saying nothing. Sometimes the pitiful/sad glances my way as I walk down the hallway past someone are harder to bear than when someone tries to say something helpful and messes up and says “the wrong thing.”

“What You Say” vs. “What I Hear” while Grieving

What you say: “How are you doing/feeling?

What I hearLike with chemo, there’s always the debate about how much you actually want me to tell you, and how honest I can be. But with grief, this often feels like you’re again asking for a progress report, and hoping I’ll say something like, “I’m doing better” or “It’s hard, but it’s getting easier.” I feel like I need to tell you that I’m getting better. Which sometimes is very true, so I can say it honestly. But other days it doesn’t feel like it at all, so I don’t want to disappoint you. Often I go to a rehearsed answer that is short and sweet because that’s easiest – like “I’m hanging in there” or “There are good days and bad days” or “It’s hard, but God is good and in control, so I’m trusting him.” It’s hard to be honest and it takes energy and time. I recently found myself accidently asking someone who went through a traumatic loss,  “How are you doing?” with a sincere desire to listen and be a comfort and help, and then realized how it came across when they gave me their rehearsed answer. A better question I’ve heard suggested is something like, “How are you doing in your grieving process?” That allows me to not feel like I have to be “better” and done grieving, when I most likely am not. Unfortunately, grief takes much longer to work through and often keeps coming back again long after everyone has stopped checking up on you or letting you know they are praying for you. We lose grieving people between the cracks because we think that it’s something that eventually goes away with enough time. It doesn’t.

What you say: “What can I do to cheer you up?” or “I just want to see you happy again.”

What I hearYou’re saying it’s wrong for me to be sad – or at least that’s what I hear. But there’s nothing wrong with sadness (watch Inside Out if you think so). Sometimes I just want to be sad. I can’t talk to my sister anymore – and I miss her. That makes me sad. Sometimes it hurts when people think I should be happy in spite of her being gone, because, you know: Jesus is good and God is in control and all of those Christian phrases. But Jesus was sad too. Jesus wept when his friend died, even after he knew he was going to raise him from the dead. So I can be sad. I can know God is good and that my sister and dad are in “a better place” and still be sad at the same time. That’s called being human. I can also be happy when talking about memories of my dad and sister and still cry because the memories are tainted with sadness too – but I wouldn’t want them any other way. Sometimes, I want to be happy too – and sometimes I really am happy. And sometimes I go from happy to sad really quickly because something reminds me of Christina or dad. I’m sorry it’s all confusing for you, but it can be confusing for me too. Don’t ever feel bad for making me feel sad about my dad or sister being gone – that’s how I should feel, and it’s good that I cry for them. I probably need to cry in the presence of someone else much more often than I do – so don’t apologize for making me cry or if you see me crying in public. You’re even free to cry with me too.

What you say: “Take hope in this verse [typically Romans 8:28] or this doctrine [God’s sovereignty, perfect will, etc.] or this promise.

What I hearI’ve already heard this a million times before. And this is tough, because often times I need to know and understand whatever you’re saying about God (assuming it is true), but it typically feels really forced and honestly doesn’t really help that often. At best it’s a decent reminder, and at worst it feels like you’re trying to be a replacement savior to me and “fix” my problem with the right answers. As a general point of reference – you don’t have the right to say these things to me unless you’ve already showed you care by listening and being present. You probably shouldn’t lead off with these things unless you’ve already built up enough rapport with me through a long friendship or somehow demonstrating you care about me, not just my fixing my problem. I’m not saying you should never say these true things – I need to be reminded of truth while grieving, but there is a place and time for that within the context of a lot more time spent together. We so often want to just give the quick solution to fix grief instead of spending the hard time to grieve with people. Which leads me to the next thing people say:

What you say: “[Nothing]

What I hearTypically I’ll fill in what you’re thinking if you say nothing – or what I think you’re thinking based on your facial expression or body posture, or even your absence. And I’m not very good at doing that. Nancy Guthrie, in the video I linked to above, says that there are two things she’s afraid of whenever she goes to church: 1) that nobody will talk about her loss, or 2) that everyone will talk about her loss – and she’s not sure which will be worse. That’s exactly how I feel often, both with chemo and with my grief for my sister and dad. But the more I think about it – it’s almost harder for me when nobody says anything at all. Grief can be so lonely and isolating, even when your whole family is grieving the same person with you – because everyone grieves so differently. Again, nine times out of ten I’d rather people say something rather than saying nothing, even if it’s “the wrong thing.”

What you say: “[Nothing about my dad, Jay, or my sister, Christina – or nothing specific]

What I hearYou’re trying to fix my grief in general, but it’s hard to do when you don’t care about my specific grief. I’m not just sad about death and loss in general – as if I need some truth about death or loss from the Bible to fix me – I’m sad because someone specific that I love has died. So even though it is hard to hear and often makes me cry, I want to hear their names: “Jay” and “Christina.” I want to hear specific memories about them, and what they meant to you. It’s nice to hear that you loved them and miss them, but it’s even better when you share specific stories about them and who they are (not just “were”). One of the most healing times for me after grieving my dad’s death in college was when I got together with a friend who had lost her dad too. Neither of us knew the other’s dad, but we just shared stories about them for hours – what we loved and what we missed about them – and to this day I cherish that time so much. It was so healing to just be able say his name and share what I loved about him, and to hear the same from her about her dad. Please don’t avoid using their names because you think I’ve “healed and moved on” and don’t want to “reopen my wounds” – I’m never going to forget them, and I don’t ever want to forget them.

What you say: “[Everything “right,” but you don’t listen at all]

What I hearWhat I mostly need during grief, is someone to be present with me. As Nicholas Wolterstorff says in his book Lament for a Son, “What I need to hear from you is that you recognize how painful it is. I need to hear from you that you are with me in my desperation. To comfort me, you have to come close. Come sit beside me on my mourning bench.” Be encouraged: you don’t have to know the “right thing” to say to me. Like with chemo, it’s OK to say, “I don’t know what to say to you” or “I have no words right now.” Most of the time you just need to be able to listen. I remember another dear friend from college who never knew my dad, but he often just sat and let me talk about him. He would imagine what my dad was like right now after I told him my stories and favorite things about his character and person. He earned the right to tell me hard truths by being present and listening for long hours (when it was probably inconvenient to him, I’d imagine). Sometimes he just sat with me when I cried under a tree, and didn’t say anything. He was a great comforter. That’s what I look forward to most about going to Houston this Christmas – just being able to share stories and listen to stories about Christina – and even just sitting and crying together as a family. It’s weird to think that I’m excited about doing something I know will make me sad and hurt, but it’s true.

Hopefully something in here has been helpful, or will be helpful to someone. This isn’t a definitive list, and it’s probably smeared with chemo brain or too blunt at times. So if you have anything to add or clarify, please feel free to comment or message me.


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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2 Comments

  • Reply Talitha B. December 21, 2016 at 3:38 pm

    “This isn’t a definitive list, and it’s probably smeared with chemo brain or too blunt at times.”
    Nope, your post is very clear – it’s great. I love how you address the same responses but from the perspective of being sick versus grieving, and how the meaning is different depending on what place you’re at.
    One of the tricky things – especially while you’re going through chemo and grieving at the same time – is that a friend won’t always know which space they’re entering into – chemo exhaustion or grief. That’s why the permission to ask specific questions and fumble and possibly say the wrong thing – when it’s done with love – can free people up to move toward the hurting person.
    I think it also helps to have a safe person process the insensitive/off base things people say.

  • Reply Jason Custer January 3, 2017 at 3:52 pm

    Thanks, Talitha. I definitely agree – lots of times I wonder which hat I’m wearing and which hat is responsible for what’s going on in my mind or my reactions. It’s made me have a lot more grace for other people without knowing what they might be going through, and (hopefully) I’m learning to show the same grace when people interact with me during this season. Thanks for the comment!

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