October 7th, 2013 §
There comes a moment in many conversations,
I can see it:
They reach their limit.
Ten minutes in, or maybe only five,
They start to drift off,
Squirm,
Just want to be done with it.
Sometimes they even say,
“Let’s talk about something else” or
“Let’s change the subject”
Every so often they go as far as to say, “This is depressing.”
Being done with it is something I would love to do.
I’d love to tell the inner me to forget about it.
But that’s not possible.
It’s not mind over matter when that matter is making you sick, as are the treatments you need to fight it.
Metastatic cancer is background music, but it is a cacophonous roar.
I put it in its place,
But it has a place.
And the fact that it even has a place,
Well, that is just the way it is.
I try to keep its place as small as possible.
For as long as I can.
But I don’t have the luxury of changing the subject or forgetting about it for a while.
Like a greedy child metastatic cancer demands attention.
I tell it to wait,
Give me a bit of a break.
First I demand it.
Then, worried, I ask again contritely.
Then I downright beg.
Please, just give me some more time.
But I don’t believe there is anyone who hears me.
I don’t believe there is a god listening,
And I don’t believe cancer gives a damn about it all.
And so the plea evaporates as quickly as it came,
The tree in the forest with no one to hear.
I can only do my research, try to make the best decisions.
But in the end,
These cells will do what they will,
As they have,
Without respectful regard to all of my attempts to banish them.
That’s not how it works:
You can’t wish them away,
Hope them away,
Love and light them away.
Cellular biology is King.
But paired to that fateful ruler
I shall be an argumentative, rebellious Queen.
Wring the most out of each day.
Find those bits of joy and beauty,
Make sure that what I’m doing isn’t waiting around to die.
For truly, that would be a waste.
And in those conversations now I am grateful there can be other subjects to move on to,
Share the lives of my friends and support them,
Even if I am simultaneously pretending I can’t hear the roar.
The greedy child still tugs at my hem,
Will not be denied.
I needn’t let that noise drown us out,
And it won’t silence me just yet.
April 5th, 2013 §
For those who wanted to hear my interview on Doctor Radio and weren’t able to listen on Wednesday, here is a link to a downloadable audio file of the one hour show. Thanks to my brother, Mark, for doing this. That show leads directly into today’s discussion.
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I always get some heat about posting essays about the stupid things people say to those with cancer.
I know people come here expecting to learn. That’s what I’m trying to do: educate. People inevitably vary in their responses to what people say. After all, responses to books, movies, and comedians are all over the place.
Occasionally people will get defensive and say, “Well, I have said one of those ‘stupid’ things and I meant well.” I am going to take an unpopular stance and say that meaning well isn’t always enough.
Maybe the listener is scared. Maybe they’ve had cancer or a family member with it. Maybe they are just uncomfortable talking about illness and death. It’s important to remember: it’s not about you. It’s about the person with the illness. If you are a friend you will need to get over your discomfort or get out of the way. What you don’t want is for the ill person to have to be consoling the listener or trying to minimize the seriousness of what they’re feeling.
Do not turn it back on you, or when you had cancer, or when your child or mother or 2nd grade teacher did. It’s not necessarily the same. Types of cancer are not the same. Even subtypes of cancer are not the same. Now, I’m not saying you should always avoid interjecting something to let the other person know that you’ve had experience with cancer. But the first thing out of your mouth shouldn’t be to connect it to someone else and what their outcome was, good or bad.
Different diseases cannot be compared. Different cases of the same disease cannot necessarily be compared, either. Chiming in with, “Oh, my second cousin’s boyfriend’s dog walker had breast cancer” doesn’t help a person, especially if it’s followed by “She suffered in pain for a long time and died” (yes, this gets said more often than you can imagine). The other end of the spectrum is, “Oh I know someone who had that. They’re fine now.” (Okay, but some people are not fine… should they be jealous? Feel inadequate?) Someone told me in response to learning I had metastatic breast cancer that his wife “had a bit of that last year.”
If you had a coworker who worked the entire time she had treatment, that’s great. We are happy for her, truly. But that bears no relation to how someone else can handle their surgeries, treatments, and side effects. So while you might think it’s supportive (in your mind you’re saying, “See, I’m being supportive and reassuring her that it might not be as bad as she thinks”) what that person may reasonably hear is, “Wow, if you have to take time off work you are weak, or at least not as strong as my coworker was.”
What would be something better to say to a coworker? How about “Please tell me how I can help you during this time. Is there something at work I can do to make it easier for you? I hope you know I would like to help if I can. If you can’t think of anything now, that’s okay. Just let me know if/when you do. I’ll ask again to make sure you’re getting the help you might need.”
Asking “Has this been a good week or bad week for you?” seems like a good bet to ask someone you might not be best friends with. It shows concern and they can be as detailed as they want in their response.
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A few weeks ago someone tweeted to me, “As a cancer survivor myself, I know that half the battle is the mindset. Be determined to defeat cancer and you will!” Then followed that one up with “I meant that if we believe we can win against it, we will.”
Comments about someone’s attitude are definite don’ts. Does that mean those who die every day are responsible for their deaths because they are weak-minded? If it were as easy to defeat cancer as mindset, people would not die of it by the thousands every day.
Similarly, comments about appearance while rampant, can strike the wrong chord. I can’t tell you how many times people find out about my stage 4 diagnosis and say, “But you LOOK just fine!” The two are not always correlated, most especially at the time of diagnosis. This is why many people don’t know they have cancer and are completely taken by surprise. When people tell me “You look great!” I know they mean something nice by it. But the rest of that comment, the dark underbelly, is “You don’t look like you’re dying” or in some ways more insidious, “If you look that good you can’t possibly be that sick/it can’t be that serious.”
Don’t say you know exactly how someone feels if you don’t have evidence to back that up. Being a compassionate person and caring friend does not require personal experience that is identical to what the person is going through. Let me say that again, a different way: in my opinion you don’t need to have had cancer to be a caring friend. It might help you to be a good friend if you have had cancer, but it’s no guarantee. People “do” cancer differently. While the experience might have similarities, it doesn’t mean we will necessarily agree on how to deal with it. Part of what I try to do here is level the playing field. I try to bring you information and advice you can use so that you will know more about helping than you did before.
Don’t tell them that their science-based treatments are bunk and what they really need to be doing is just changing their diet, breathing pure oxygen, or relieving their constipation to be cured of cancer. Do not tell someone who is in the middle of treatment that chemotherapy is a waste of time. You may think your suggestions of supplements/vitamins/tea are harmless, however, there are serious interactions that can dull the effectiveness of chemotherapy and other treatments. Not all lotions are good to use during radiation treatment. Not all vitamins are good additions.
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I like what @travisbhartwell tweeted to me: “Mindset changes the days you have, not the number of days you have.”
The worst thing that can happen is that friends disappear. This is happening to me in spades. It may be that they are afraid they’ll say the “wrong” thing and end up being written about. But I think it also has to do with the fact that death and illness make people uncomfortable. I represent their fears. People who should be in touch with me at least every week or two (because that is how often we saw each other before) have just dropped away.
That said, there are so many people in my life who are so wonderful. Who offer to help, who make it easy to accept it. Who send notes or emails of support months after the initial shock. Who keep asking what they can do. Who pointedly give ways they can help and ask if I could use it.
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One thing I think is very important is to always say to someone who is ill or has experienced a death in the family: do not write me a thank you note for this. Do not feel the need to answer this email. Do not feel the need to call me back.
If you live near the person ask them, “Would it be helpful if I texted you before I run errands so that I can pick something up for you?” Texting and email help because talking on the phone is almost always too much of an ordeal and/or inconvenient. I have friends who email me at the beginning of the week to say, “I’ll be at the grocery store, the drugstore, and the post office this week. Can I do anything there for you?” Some will text on the spur of the moment, “Running to Costco. Need anything?” These are invaluable offers.
If you have no knowledge of what information you are being told, admit it. People with serious illnesses do not expect you to know everything about their new diagnosis. They are probably learning a lot of information in a short period of time and may not even know the details of their diagnosis and treatment. They don’t expect you to have the knowledge but you need a way to connect. I recommend when someone tells you about a diagnosis you don’t know much/anything about you say, “I don’t know anything about what that diagnosis means. Would you mind telling me about it, and what it means for you?”
How is it affecting your day-to-day life and what part of that can I help you with?
I’m so sorry to hear that.
What is the worst part of this for you and how can I help make that a bit easier for you?
If your friend is dying or has a relative who is, and they refer to the death or how difficult treatment/daily life is, don’t brush it off, dismiss it, or say, “Oh, you’re not going to die. You’ll be fine. It will all be okay. Things will work out.” Saying this to someone with stage 4 cancer comes across as dismissive of the seriousness of their diagnosis.
If the listener says, “Oh, that’s depressing, let’s not talk about dying,” it can isolate the person who is ill, making them feel they should not be thinking about what is a very real concern or outcome. As Julie Klam points out in her book Friendkeeping, acknowledging someone’s wishes should be paramount. She tells the story of her mother and her mother’s friend Patty who was dying of cancer. Patty wanted to give Julie’s mom a pendant. Rather than gratefully accepting it, Julie’s mom insisted Patty would wear it again, that she would get better. Instead, she died a few days later. Years later when recounting the story with regret, Julie’s mom said, “She knew she was dying. It probably would’ve been comforting to her for me to acknowledge that… I was just afraid that she had some small glimmer of hope. I just didn’t know.” I would bet that if that same scenario happened again, Julie’s mom would act differently.
Later in the chapter Julie recounts being a friend to someone who had to terminate a pregnancy. She asks Julie a question that continues to haunt me: “Will anything ever be good again?” It echoes in my mind now: Will anything ever be good again? Will anything ever be good again?
The truth of the matter is that for some it will. For some people, it won’t.
Check in with your friend intermittently. Give her reminders that she is not forgotten even if she is not out in public. I love getting cards or texts or emails that tell me what my friends are up to. As I write this my friend Kathleen texted me to say she was eating at one of our favorite places. “I miss your company” she said. How can you not love that?
I love written notes. I save my favorites. When I’m having a bad day there is something about pulling out a card, seeing handwriting, reading a message. It’s just more personal than seeing it on a screen. Of course texts and emails are great for frequent check-ins, but for a special message? Real paper can’t be beat.
Other winners to me are notes that remind me of a funny experience a friend and I had, a favorite memory. Many people know I love my garden and flowers. They will send me a pretty card and tell me what they saw at the farmer’s market or in their own garden or what they’re looking forward to about Spring. Sometimes they will tell me about being on vacation and how they thought of me when they saw the water or the tropical plants and they remembered a trip I’d blogged about.
Some send a favorite poem or story or memory. I like those. I don’t like religious quotations or cards that focus on people praying for me or hoping for a miracle. That assumes I am a religious person (I am not and I don’t believe in miracles). I think cards should focus on the person— the connection to that person, your friendship, not what types of religious comfort or explanation the writer endorses.
One Twitter friend, Neil Shurley, wrote me a song titled “We Love You, Lisa,” and then made a video with people holding up signs that say those same words. I still watch it. I always cry. It’s one of my favorite things anyone has ever done for me. This, from what most people would term a stranger. Another friend, Nichole, took photographs that people sent her, combined them with poems and sayings and turned them into a photo book for me. When I’m down it’s another thing I reach for to feel support.
Does the person who is ill have children? If so, you can do what one room mom did for me this year: For school events Lizzie always asked if I felt well enough to join on any party or field trip. She offered rides to school performances. When I could not attend, she (and other moms) took photos and videos and sent them to me… without being asked. My friend Zerlina put together a playdate calendar and a dozen moms signed up in rotation to have Tristan over three times a week for playdates for the past six months. This was especially helpful. Sometimes I’ve been well enough to say we would host the playdate here. But knowing there was fun built in with his friends was a relief to me.
Finally, I always love my mother’s suggestion for one of the best questions you can ask in any situation whether it be posed to a friend, a spouse, a child, a coworker. When someone comes to you with a complaint, a problem, or a rant asking the simple question, “Do you just want me to listen or do you want my advice?” is a wonderful way to be supportive. Sometimes a friend just needs to cry and vent, no advice wanted. By asking you will show sensitivity to the distinction. This is what I mean by not needing to have had the same experience to be a good friend. Listening matters. It’s free, and all you have to do is offer (and follow through).
And if you have a serious illness how do you respond when someone asks you how you are? If you don’t want to answer in detail, one suggestion is to say, “There are good days and bad days. Today is a … day.” This response is also a good one after the death of a loved one. If you are having a good day it allows you to acknowledge they’re not all like that. If you’re having a bad day it expresses that you know they won’t all be like that, either.
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I think we all like to hear that we matter, that we make a difference, that we are loved. In the end, you can never go wrong by telling (or writing) someone what they mean to you, what you like about them, and what you enjoy most about being with them. This is the essence of friendship to me. Some days you need a serious chat. Some days you need a friend to be silly with. Some days you need a friend to go shopping and have a gossip session with and try to put cancer in the back seat for a few hours. There are many ways to be supportive.
My dear friend Cathy texts me every morning to wish me a good day and asks, “How can I help you today?” I most certainly don’t expect that every friend should do this. But boy, it means a lot that she does. I rarely need something these days. But I will someday. And when I do, I know she’ll be there for me.
I have so many people in my world who care. I know how fortunate I am. I hope that some of these suggestions will be helpful and I am sure you will find others as readers comment on the post. You don’t need to have many things to say… a few good options will do.
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I hope you all have a good weekend, we are starting to feel Spring here and boy, does it feel good!
April 2nd, 2012 §
We gather friends like seashells throughout our lives, tucking the treasures away to take with us as we walk. At different times, we appreciate different qualities of those friends; characteristics that initially attract us to someone may later be a source of discomfort. Some friendships last entire lifetimes, others are brief but intense. Friendship is an art form, one we must learn and practice daily.
I recently read Lindsey Mead’s post about friendships made during life transitions. She writes, in part: “It strikes me that it is not an accident that our truest and most lasting friendships are forged during times of life transition; we are closest to those who have shared experiences that changed who we are. Whether it was childhood, college, or becoming mothers, this is true for me.”
I’ve thought about this for weeks because while I absolutely understand what she is talking about (and do have some friends like this), I’ve also seen many of those friendships fall by the wayside. I have written before about the ways cancer and friendship sometimes don’t mix. There are friends who just can’t deal with a friend’s illness and/or death of a family member and they just disappear. In contrast, there are friends who seem to thrive on helping when there is a crisis underway.
When I was diagnosed with breast cancer at 37 I did not have any friends who had already had the disease. One of my closest friends has a son who had experienced leukemia twice and received a bone marrow transplant from his sister that saved his life. I talked with her a lot, not only because she had some sense of the fears I had but also just because she is my friend and a great listener. While I treasured that connection, though, I didn’t know anyone who had recently had a double mastectomy, chemotherapy, or needed to figure out how to balance those treatments with caring for three young children. My diagnosis preceded my involvement with Facebook and Twitter; social media would have greatly changed my experience with cancer.
I didn’t like support groups; they just weren’t right for me. Instead, I found myself talking to and finding support from a few women who used some of the same surgeons I did. We’d see each other in the waiting room at the plastic surgeon’s office when we went for weekly “fills” to add saline to the tissue expanders in our chest that were stretching the skin and making space for the implants some of us chose to receive. During chemo, nurses would often try to put younger patients in the same semi-private chemo room so they could meet and pass along wisdom and support.
Not every interaction I had led me to a friendship, of course. Sometimes in stressful situations we just need someone to help get us through. Like the stranger in the seat next to you during a turbulent airplane ride who chats with you and passes the nervous minutes, we rely on strangers to steady us when we wobble. We look for cues that everything is okay, that our experience is in the range of what might be expected.
But as my chemo and surgeries and constant doctor appointments waned, there was more room for “the rest of our lives” in the conversations I was having. One woman and I became quite close; we’d meet for coffee and spend hours talking about cancer, its effect on us, our children, our spouses. We were different kinds of people, though, in dealing with our similar cancer diagnoses. As time went on, it became more and more apparent. For example, she didn’t want to share as much information with her children about her cancer as I did. She turned to controlling food as a way to deal with her fears of a recurrence; she felt she would be immune from a recurrence if only she only ate certain foods. She wanted to train to be a Rekei healer. Eventually, though, it was our disparate attitudes about cancer that drove a wedge between us. She felt it was important to always put a sunny face on cancer; she felt it was necessary to find the joy in it. She had a “head painting party” when she went bald from chemo. She had her daughters paint her head with designs and words. She collected positive sayings into a little book that extolled the virtues of positive thinking as a key to remission success.
I could be her friend and listen but I could not agree with what she believed. The thought of someone placing their hands over my skin but not touching it and transferring energy to me (Reiki) did not work for me. I didn’t believe that food was key to avoiding cancer (after all, I had friends who had been vegetarians before they got cancer; if food were the simple key to avoiding cancer we’d have figured that one out by now, I thought). I felt control of food was a grief reaction, a way to manage fear in an uncertain world. That difference alone would not have come between us, though. I think it was the “positive thinking is the key” that I think was the biggest stumbling block. We just fundamentally differed about how to approach this disease that dominated that period in our lives.
I was strong, determined, motivated. I researched the available options and discussed them with my medical team. I pushed back when they suggested certain treatment options. I was a participant in my treatment plan. But I also felt that this thing called cancer SUCKS. And it was okay to say that. It was okay to have a bad day, or hate shaving my head. I didn’t have to have a head painting party and rejoice in the experience of going bald from chemo. It was okay for me to get halfway through shaving my own head in my garage on the morning of my second chemo and tearfully ask my father to help me finish because I couldn’t get it all. It was okay to cry, to scream, to pout for a bit. Then I picked myself up and moved on. That’s what worked for me.
Every time I got a piece of bad news or felt overwhelmed after a doctor’s appointment I allowed myself 24 hours to recover. That day I could complain, feel the injustice of it all, just react. But the next morning: it was time to get on with it. Those negative feelings were important to me. They were real. They were how I felt. And having someone constantly saying that I should only think positive rubbed me the wrong way. It was, to me, “pinkwashing”: making breast cancer seem less awful than it often is. If the only things I expressed were how “cancer is a gift” and I “had to find the beauty in it” (as she did) that denied a very real truth to me: cancer had fundamentally changed my life and those around me, and those changes weren’t always positive.
It didn’t mean there weren’t experiences or people or lessons that I appreciated. It didn’t mean I didn’t want to emerge a wiser person for having gone through it. But “cancer is a gift”? No way. I saw blogs and books where survivors wrote, “Cancer is the best thing to happen to me.” I will never say those words. I think of all of the people in the world who live with cancer every day, whose lives will be cut short by it, who have lost people they love to the disease. In my mind it diminishes their deaths and diminished quality of life to say their disease is a gift. I will not say that cancer was the best thing to happen to me.
My friend and I just sort of fell out of touch, though we have talked a few times in the last few years. We have only warm feelings for each other and wish each other good health and happiness. But we aren’t close. And what that tells me is that cancer is a part of life. You can’t make a relationship work just because you have the same disease. We have different kinds of friends for different reasons. Some we love them because they are “just like us” and share common interests or senses of humor. Some we love them precisely because they are different– they push us in ways we are not accustomed to or expose us to interests or information we otherwise might miss. In this day and age we have Twitter friends, best friends, school friends, Facebook friends, etc. We interact with a variety of people in very different ways.
I also realize that we have different levels of patience for conflicts at different times in our lives. Maybe the differences I had with my friend about cancer wouldn’t bother me so much now. Maybe we were both raw and stressed about managing our illnesses and our families. We supported each other through the hardest times and once that period was over we just moved on in different ways. Maybe that wasn’t even what really caused our relationship to cool off in the first place; after all, we didn’t part ways on bad terms, the friendship just “fizzled.” It happens.
I realize I’m more likely to make friends in the daily grind of life, and my life is full of more people I consider friends than ever before. I have a rich network of people I like, trust, and enjoy spending time with. We are not always similar, and we don’t even have to share the same beliefs all of the time. Respect and kindness are hallmarks of friendship, and every relationship for that matter. I really enjoyed thinking about the friendships I’ve made, how I’ve made them, and which ones haven’t worked. The topic of cancer and friendship is one I will continue to write about. I treasure the friends I have. I am fortunate.
Thank you to Lindsey for planting the seed for me about this topic; she and her blog frequently push me to think, learn, and grow. I’m still ruminating on this subject… and I like that.
July 3rd, 2011 §
Katherine Rosman’s piece “Why Friends Help Strengthen a Marriage” in this week’s Wall Street Journal is an insightful look at some ways in which friendships serve as additional support to the ever-challenging marital relationship. Noting that modern times have uprooted many from the anchor of their families, Rosman identifies that friends have become our “family of choice.”
Making friends with other couples is important, not only for practical and social reasons but also because they strengthen our own marriages. Rosman explains, “[A group of friends and I] all agreed that friends help you gather perspective on your relationship to your spouse: When you’re inside a marriage, it’s easy to focus on the points of friction and the minutiae of daily life.” Therefore, friends serve as a buffer, a release valve to ease tension.
As I was reading, however, I began to think of ways in which the opposite could be true. (I should note that I agree with everything Rosman says. Many/most of our own Saturday nights are busy with dinner plans with friends, people my husband and I both enjoy being with. I think it’s not easy to find couples where all four individuals truly enjoy each other’s company. Clarke and I treasure these friendships and really enjoy spending time with the people we care about. I do think it helps our marriage to be with other couples and to see how others interact. The “perspective” concept is vital.)
Here is a dynamic where I think the opposite could be true; that is, friendships with other couples could undermine the marriage:
You go out with couple A and see how they interact. Perhaps one spouse speaks really nicely to the other, compliments him/her in front of others. Or at dinner one spouse doesn’t talk too much and gives the other time to talk. One prompts the other with things like “Tell that story… I love when you tell it. It’s so funny.” Couple A spends time together, helps each other, and/or travels together. While they aren’t perfect as a couple, (who is) they are generally respectful and happy.
Now, Couple B sees this relationship. One person thinks, “Wait a second. Our marriage isn’t like that. Is that what it could be like? Why doesn’t my husband/wife talk about me that way or help me out. Maybe I could do better? Or I would rather be alone than be treated like this if I see some other people have these types of warm and supportive relationships?”
Suddenly, there is a comparison, a reference point. It is precisely this comparison component of friendship which can often be destructive. You might do the comparison on your own, or in a one-on-one chat with a friend (“How does it work in your marriage?”)
Besides comparison, another potential wedge can be introduced into a marriage with critique. Most often, we just need friends to listen. However, sometimes we ask for or they feel compelled to offer opinions, advice, and criticism. In our loyalty and love for our friends we may advise them “you know, your partner doesn’t treat you as well as s/he should.” What we take as normal, tolerable, average, a friend may plant the seed of doubt. In an effort to be supportive they may be “bashing” the spouse. “You could do better,” may be proffered.
I think Rosman’s scenario works but until a tipping point. When all of the couples are happy, (or at least have a similar sense of dissatisfaction) and the disagreements in the marriage don’t escalate, the friendships serve as buffers, releases for some of the frustrations that inevitably accompany two people in a long-term relationship. However, the critique and comparison can ultimately cause trouble. The tolerance for frustration may change as the number of years of marriage increase.
Finally, what happens if one of the couples eventually splits? Not only does that breakdown affect the dynamic of the foursome, (couples will be forced to “pick sides”) but it also serves as an example of how marriage can go awry. “If it can happen to them it can happen to us” may be a question difficult to dislodge. If comparison results in the opinion that their marriage was as happy as your own, the implications for your own long term success may eventually be called into question as the years go by and more and more couples split.
Comparison, critique, and divorce are three ways in which friendships may undermine our own marriages.
I really enjoyed reading Rosman’s piece; once again she has brought a fascinating topic to the page, one that many of us deal with in our daily lives.
June 12th, 2011 §
Cancer is not one disease and there is more than one way of coping with a diagnosis. While some patients research every aspect of their illness, treatment, and prognosis, others would rather have their physicians sift through information and chart a particular course of action for them.
While many people with cancer or other illnesses may agree on what they like to hear (or not hear) from friends, family, and acquaintances, Bruce Feiler’s New York Times piece “‘You Look Great’ and Other Lies” falls victim to assuming that just because it is true for Bruce means it’s true for all. While he does use “many” and “most” throughout the piece, his list is prefaced by “Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick.” If Feiler’s piece were a blogpost I might not feel the need to react in such detail; however, as a highly visible piece, I suspect there are many readers saying to themselves, “I say a lot of those things… was I really that wrong?” All day yesterday my Twitter followers were asking my opinion about the piece; they wondered if he was right.
I recognize that there is a lot of good advice in his piece, and I want to acknowledge how hard it is to write a short article about such an important and personal topic. I think that opening up this subject to a larger discussion may allow readers to see the variation in reactions: remarks are interpreted in a variety of ways by different listeners. Even the same remark may be interpreted as harmless one day and loaded the next; hard and fast rules are unlikely to apply.
Thus far on my blog I have resisted writing rules about what people should and should not say. Readers have forwarded many such lists to me for my opinion. At the time I was diagnosed, I was the first of my friends to have cancer; I didn’t have anyone I could ask for advice.
I was often annoyed with the comments people made. I felt some were just silly (“It must be nice to be able to have time to rest in bed during chemo”) while other comments seemed hurtful or downright rude (“Is your cancer what is going kill you?”). While I was frequently upset or offended by statements people made, I didn’t articulate a list like Feiler’s. Why? While I reacted negatively to some things people said, I still felt that in most cases their intentions were good. That is, they might have made comments that were not helpful, but they weren’t making them to be hurtful. They might have been nervous, naïve, or clueless, but they weren’t trying to be cruel.
While the hope is that people will think before they speak, saying “these are the things you must not say” will make people even more self-conscious. The danger is that people will do something even worse than the things Feiler mentions: they may remain silent and not offer any help or express any affection at all for fear of saying the wrong thing.
Many people don’t know what to say. It’s wonderful to have some suggestions of what you should say as Feiler does (and I think he’s spot-on with every one of those). The danger of criticizing in harsh terms is that every person you’ve interacted with then feels the need to ask, “Are you talking about me?” At that point you are put in the position of consoling those who should be helping you. Frequently I found myself in the position of comforting others about my own diagnosis or that of one of their relatives. My recommendation is to avoid telling a person with cancer about your friend or relative who either had it and has lived 20 years (implies their fears are unwarranted) or that a person you know died a terrible death (discouraging).
One main criticism of Feiler’s piece is that it makes no distinction of or allowance for social proximity. That is, the expectations we have for what others should say to or do for us varies in relation to how close we are to them. It may be reasonable to expect a spouse or best friend to clean your refrigerator but not for your child’s teacher to do so.
Now, on to more actual details of the piece.
It’s interesting that Feiler assumes the offer of food is innocuous. He claims food was one of his great helps and implies that this is a safe way to offer help to those in need. I explicitly forbade food to be brought to my house. I didn’t want anyone spending time or money preparing or purchasing food that might not get eaten. One friend reported that while her son was being treated for leukemia, well-wishers sent so many lasagnas that her kids could no longer look at the dish after a few weeks of receiving them. Similarly, smells eminating from food can often be offensive during chemotherapy.
Feiler starts his list of helpful speech and behavior by outlawing the questions, “What can I do to help?” and “My thoughts and prayers are with you.” he tells readers, “Just do something for the patient… Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.” Gee, I’d like someone to do those things for me even when I am not sick!
These things are not only unrealistic in most cases (live far away, don’t have a spare key to the house) but also impractical. These sound like suggestions for close family and spouses/partners. Perhaps saying, “Where’s your to do list—I’ll pick something off of that” might be more reasonable. I don’t want anyone in my house, actually, and how can you know what to do unless you ask?
To me, asking “what can I do to help” is not the same to me as “Call if I can do anything.” His point is that it “puts the burden back” on the person who is sick to come up with a way to help. I predict most people have their mental “to do” list available and could reel off a few suggestions to those who would offer. Close friends can just “do” or insist in a way that others can’t. I do agree with him that being more forceful about helping is the right way to go, just not to the degree he does. Taking children for playdates (phrased as “We’d love to have your child over, please let us/we won’t take no for an answer”) is a lot more likely to receive approval than, “What can I do to help?”
Further, those who are ill may take pride in being able to accomplish a task themselves. I wanted to be able to do small tasts to contribute to taking care of the house. It’s not realistic to think an acquaintance is going to march into your home and scrub your toilet; after all, it’s hard enough to get those who actually make the mess and live there to do it. Arranging for a cleaning service to come might be more helpful. Often it’s easier to allow strangers into the home than friends; and it could be done while the person it at chemo treatment, for example. (with care taken about fumes and smells that might trigger nausea). Offering to do grocery shopping or be available to receive an online grocery delivery might be good, too. There is a whole post I could write about suggestions for how to help a friend.
Feiler also outlaws “My thoughts and prayers are with you.” He writes, “In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending ‘thoughts and prayers’ are just falling back on a mindless cliché.”
First, I think this is an extrememly personal reaction. How a person deals with severe illness is highly charged. In my case, I don’t want your prayers under any circumstances. I don’t believe in God and I don’t want you to pray for me. I didn’t tell anyone not to do it; after all, it made them feel that they were doing something for me. However, it also smacked of illogicality; why pray now? The damage is done: I’ve got cancer. I don’t believe that your prayers will make the difference as to whether I live or die from it; after all, I am quite sure that the people who die from cancer every day have people praying for them, too. Feiler assumes again that what is good for him is good for all– not all people with cancer will find prayers comforting. It’s a bit confusing because he also says it’s something not to say; I’m not sure where he really falls on this matter.
Second, when someone says, “My thoughts are with you” (a phrase I use often and am not about to stop) I think it can be nice. When you live far away or don’t know someone well it can an expression said with genuine concern; when said to a close friend or family member it expresses affection while feeling powerless in such a terrible situation. I believe that to be true.
I counsel: empty phrases said without emotional authenticity are likely to fall flat with the recipient. But I think telling people not to say, “I’m thinking of you” is extreme.
I wholeheartedly agree with his #3 (“Did you try that mango colonic I recommended?”), #4 (“Everything will be o.k.”), and #5 (“How are we today?”): double emphasis on numbers 3 and 4.
Then we come to #6 (“You look great”). This is the one the title points to as “a lie.” One major criticism of the piece is that “You look great” is not necessarily a lie (and I believe the compliment most often is true). I think what Feiler is sensitive to is that we have no way of knowing if it is in our particular case that someone is lying or not. Even in the midst of terrible sickness it’s likely the speaker means “considering everything you’ve been through” which can still be an honest compliment. Also, many people appreciate being told they look great, even if the truth is questionable. Some days it doesn’t take much to lift your spirits. In the piece Jennifer Goodman Linn said, “When people comment on my appearance it reminds me that I don’t look good.” She is convinced she looks bad and doubts the honesty of the comment. Why can’t it be that she does look good? Why isn’t there room to compliment anyone on how they are dealing with things?
As I see it the real core of the problem is that “you look great” might imply that “you can’t be that sick.” Observers are trying to reconcile the disease inside with the appearance outside. When pictures of Gabby Giffords emerged yesterday, for example, everyone including newspapers commented “how great she looks.” I did not. While I thought it, and believe it (I guess Ms. Linn would find that impossible to believe), I didn’t say it because I was not trying to undermine the seriousness of her condition. Just because she looks good doesn’t mean she isn’t terribly affected cognitively and physically by the aftermath of being shot in the head. Just like when your hair grows back after chemo and everyone takes this to mean you are “all better,” serious medical situations can be present even when not visible to outsiders.
I loved when people told me I looked good. I looked sick, of course. But the effort I took to put makeup on or compliments to how I wore a scarf to coordinate with my outfit were nice. On a day I felt sad I always loved a compliment.
The irony is that illnesses that are invisible can be harder to live with. “I know you are sick but you look so healthy” is not helpful. It’s always disconcerting when someone who “looks healthy” is diagnosed with a serious disease or dies suddenly. These situations strike fear in all of us because being healthy makes us feel protected. When someone looks like us but is concealing serious sickness it can make us feel vulnerable– but that is not the patient’s problem. I again revert to the advice that you should say what you honestly believe. I don’t think it’s always a lie and I don’t think it should be on the list of outlawed expressions.
“People reminded me that I had a free ‘No’ clause whenever I needed it,” said one person in Feiler’s piece. My advice: let those who need to use it do so. When a friend got her own diagnosis of breast cancer, she assumed she would easily be able to opt out of being a Girl Scout troop leader during surgery and chemotherapy time. Instead, she was not given a gracious “pass” and no one offered to fill her spot (that would have been one way to really help). Instead, “But you’re still going to be able to be a leader, right?” was the reaction that met her.
I totally agree with the suggestions Feiler makes for things to say (Don’t write me back, I should be going now, Would you like some gossip, and I love you). I think there are more, but I think he’s got some perfect ones to start a list there.
Elsewhere I’ve asked readers to contribute the strangest/rudest things people said to them when they (or a loved one) had a serious illness. Some of the responses there are definitely statments I would caution people to think twice about saying. I also heard:
“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing” (similar to Feiler’s “Everything will be okay”). And there are many more.
There is an anger that can divide friends and family once a person is diagnosed with an illness. “You just don’t get it” or “You wouldn’t understand” can be a common refrain whether silently or outwardly expressed. The same words spoken by a friend/acquaintance/colleague may be interpreted differently depending on the day or mood of the patient. I quickly learned that physical pain and emotional agony trumped all; I had little patience or care for others when I was hurting. I learned to withdraw during those times or only discuss it with those who did understand. My hypersensitivity was undestandable but not necessarily easy to be around. The desire to be understood is part of how the ill connect, attract, and cling to one another. The fact that most people with a serious illness can rattle off offensive or ineffectual questions or comments made to them means they are important.
Feiler’s piece struck me as one in which his feelings of “you just don’t get it” were overwhelming and raw. While much of the advice is good, in the end I am critical of him for the same reason I didn’t make such a list during treatment: if you go around telling people how what they did was so wrong all the time, and things they should never do, soon enough they won’t say anything for fear of disappointing or offending you. In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them. I guess I shouldn’t say that will work for everyone, but that’s what works for me.
June 3rd, 2011 §
More often than not, cancer creeps into conversations with friends. New friends, old friends.
I don’t think I’m obsessed with it. I don’t have to talk about it. Why does it come up?
Is there a cancer radar?
Is it just that when cancer folks are together we let our guard down to share?
Do we want to compare notes and try to get information from each other?
Probably all of the above.
Here’s also where I think it comes from: talking about illness is grounding. It puts the emphasis where it should be. I have many friends who have family members who either have had or currently have cancer. We’re a club. There is a support we can provide for each other, a language we can speak. Stages, grades, blood counts, oncologists, PET scans, MRIs, tumor markers… and on it goes. I really think I should get credit for CSL… cancer as a second language.
I like people who “get it”; I find more and more that I am naturally drawn to them. I’m rarely surprised to find that new friends of mine have had some type of hardship in their lives.
Maybe it’s just that more and more people have “something” in their life story.
Maybe those are the people I gravitate to.
Maybe they are drawn to me (or the “vacuous people need not talk to me” sign I have on my back scares others away).
It’s not that I don’t like talking about shoes or The Bachelorette or movies. I do– a lot. And I actually do think they matter. It’s important to have a break from the heavy, serious stuff. Some people think that the small stuff is all there is– that it matters. Those people are hard for me to take.
One day, shortly after I was diagnosed, I sat watching my son take a tennis lesson. I was still numb and reeling from the news that I had cancer. I hadn’t started chemo, and was still awaiting surgery. I knew what I was facing: double mastectomy and chemo. But to the outside world I looked totally normal; no one would know what news I had received.
There were two moms sitting near me chatting loudly while their kids had their lesson. These were the days before the recession, when women in my town were flush with cash, and living high on the hog. They were talking about vacations. “I just can’t decide where we should go for vacations this year,” one said, “John has so many vacation days it’s going to be hard to use them all. We could go to Switzerland again. But that’s kind of boring. And there’s the Caribbean. But I kind of want to do something different. What do you think?” she said to her friend.
I know what I thought. I thought someone needed to hogtie me to the chair before I punched her out. That was a problem? It was one of the few times I really wanted to say “Lady, let me tell you about a problem.” But I didn’t.
Why?
Because maybe her mammogram was the next day.
Maybe she was a day from being told there was something suspicious on it.
Maybe she was a week away from having a biopsy.
Maybe she was a month from having a double mastectomy.
Maybe she was six weeks from starting chemo.
Maybe she was just about to learn the lessons I was learning.
May 3rd, 2011 §
There isn’t one right way to react to loss. And the thing about grief? It’ll sneak up on you precisely when you’re not looking.
This morning I attended a memorial service for a 38 year-old mother of two. She died of complications from leukemia, leaving a loving husband and two children behind. We were connected by a shared friend and a diagnosis of cancer.
When Kellie was diagnosed fifteen months ago and learned she needed to have chemotherapy I offered her my scarves. I had an extensive collection from my months spent without hair and had been serially loaning them out to friends after my hair grew back. After they’d covered my head, they’d gone to a friend’s sister in Colorado who had breast cancer. Then they went to a friend down the street who also had breast cancer. The fourth head they touched was Kellie’s.
During that time I had to deny others the use of the collection. I know too many women who’ve had cancer, I thought. There isn’t a break in between their tours of duty. The scarves don’t rest, they just keep traveling.
Perhaps some might find it icky to wear a scarf of someone else’s. That never seemed an issue for my friends. In fact, their softness from being washed so often was a bonus; heads are sensitive when hair comes out and the softer the cotton is, the better.
Kellie had those scarves for a long time. Her own fiery red hair was long gone; my scarves were a poor substitute for that ginger hair of hers. I like the thought of her having something comforting and cheery to cover her head during some of those difficult days though.
After the service today the guests stood talking over coffee and tea and far too many sandwiches and baked goods. Unprompted, our mutual friend assured me the scarves were safe and would be returned soon. I know when the stack comes back I’ll touch the scarves longingly, wishing Kellie were delivering them herself.
I’m overwhelmed today with emotions… sadness at the second Mother’s Day without my beloved mother-in-law, anger at cancer for claiming another young mother, frustration that oncology is often an art more than a science, worry that it will happen to me.
I just need to think. I just need to cry. I just need to remember. I just need to live.
April 24th, 2011 §
I have a friend — a good friend. We’ve known each other for a long time. When I was going through chemotherapy for breast cancer, however, she wasn’t my most sympathetic friend. One of her typical reactions when I would talk about the bottomless fear of cancer recurrence that was swallowing me up was, “Well, I guess you’ll just have to get used to it.”
This was not really stellar support in my book; I think she could have done better. In my mind, because a close family member of hers had cancer in her past, she was not a stranger to its emotional component. Perhaps if no one in her life had ever had cancer I might have been more forgiving. Her relative was doing well, still in remission many years after her initial diagnosis. I mentally wrestled with myself: was I being too hard on a friend? After all, my emotions were on a rollercoaster. Things that didn’t bother me one day would infuriate me the next. Was I actually trying to let her off the hook for not emotionally supporting me? Was I excusing bad behavior? If those who have no experience with cancer shy away from those who are ill and those who have experience do so as well (if the memories are too painful to think about) then who is left to support you when needed? I couldn’t decide if I was expecting too much; maybe I was setting my friend up for failure.
Many times on the phone with her during my months on chemo as she proceeded to rant about the problems in her life and the ways in which things were not going her way, I wanted to point out to her how my life was “doing me wrong” in a bigger way.
Looking back, I wanted to trump her woe.
Lately, she has been having some medical issues of her own. Nothing permanent or relatively serious, but annoying and painful. For the last few weeks she has had some pain that is “excruciating.” She’s abroad this week, on vacation with her family. The pain, I guess, was not enough to keep her from that. While she has complained about her pain, her appointments, her problems for the last few weeks, I’ve really been holding back. I’ve really had to fight the part of me that wants to once again lash out.
“I guess you will just have to deal with it,” I want to say just like she did to me.
“I guess it’s not bad enough you can’t take your European vacation,” I want to say in a childish retort.
I want to trump her pain.
I want to wave the cancer card. Cancer trumps her issue, chemo trumps the discomfort she’s got.
Four years ago I found it almost intolerable that she should complain to me about the small things that were bugging her… the traffic on the way to school dropoff and how “inconvenient” her child’s schedules were. The way she had to take her child to the doctor twice in one week to check out an ear infection. How repairmen were keeping her waiting.
These things get sympathy from me under normal circumstances; these are things that bug me in my own daily life.
But not then.
While I kept silent then,
put it behind me then,
this latest round of friendship injustice just makes that time raw once more.
It brings that anger back.
My fear is that every time my friend has a hard time from now on, I am going to again have that feeling that she let me down when I needed her. I thought I had moved past it, but I guess not.
I don’t want it to get in the way of our friendship.
Maybe someone who wasn’t there for me then can’t really be a friend now.
Maybe some lessons can’t be learned until you go through them for yourself.
Maybe she can’t know how her responses hurt me unless she experiences it for herself someday.
The thing is: I don’t wish it on her.
People have different strengths.
We shouldn’t expect a person to be good at everything–
To fulfill all of our needs, all the time.
Extraordinary times call for extraordinary measures.
Maybe that’s true of forgiveness too.
January 19th, 2011 §
April 1, 2009
How can you be a good friend to someone with cancer? Doing the same things you do for any friend: show you care, express interest in her life, be sympathetic, and offer to help when she will let you. The best thing you can do is to be a good listener.
Being a good listener seems obvious, but it’s harder to do than it sounds. First, you need to remember that if you haven’t had cancer, you aren’t going to really understand what your friend is going through, what she is feeling. You might think you do, but you don’t. You can’t.
The fact that you don’t share the bond of cancer, though, doesn’t mean you can’t be helpful, supportive, and caring. You can be all of these by listening. Some of the most supportive people in my life have never had cancer. It doesn’t matter. They are good friends in part because they are good listeners.
Listening does not entail giving advice.
They are two totally different acts. One requires that you listen while your friends talks. One involves you giving your opinion about how your friend can change and what she can do differently/better.
In times of active crisis, the best thing you can do is keep your opinions to yourself. Unless you truly know what that crisis feels like (the death of a child or spouse, a serious medical diagnosis, or a divorce, for example), your advice will fall into the category “things people-who-don’t-understand say.” For me, others’ advice usually misses its mark. The result? I feel further misunderstood; therefore, I am more isolated.
My mother taught me the difference between these two acts. “Do you want me to just listen or do you want my advice?” she would ask. Sometimes I wasn’t sure. Sometimes I’d ask for the advice and not follow it. The fact that she gave me the choice, asking the question directly, gave me control. I was telling her how to be helpful– what I needed from her.
I know it’s not easy to just listen. But sometimes asking the specific question, “Do you want my advice or do you just want me to listen?” can help us be exactly the kind of people we want to be — better friends to those we care about.
January 16th, 2011 §
A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”
This was the highest compliment and I appreciated those words immensely. Her words got me thinking.
So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.
It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see “Everyone Needs a Trailbreaker”), I suddenly became the trailbreaker for my best friends.
I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.
When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”
I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.
In the future, others will need me. Friends will ask me how to help, what to do, what things mean.
There is a lot of pressure coming my way and I think about it already: what if I let them down?
That’s the kind of person I am.
I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.
And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.
I want to be the lightning rod.
I want to take in on for them.
I want to protect them.
Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.
That is my greatest hope, my greatest dream.
If I could sleep, that would be my dream:
To keep you all safe.
January 13th, 2011 §
There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.
It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.
One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.
As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.
A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.
What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”
The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.
But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.
Maybe the battle is not really with cancer. Maybe it’s with myself.
But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.
You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.
Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.
Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”
An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.
There comes a moment in many conversations,
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