Tag Archives: cancer communication

Talking About It

My life is still reverberating from the act of talking and writing about the idea of my own death.  Reverberating in a good way.  It feels like something happened to the weight and girth of the subject; like I can get my arms around it and shift it to a more comfortable place, instead of just feeling crushed by it.  When it was just in my head it was menacing and bullying – but when I talked about it with the people I love it turned out that my private hell was not mine alone.  My fears became our shared fears (sorry about that) which allowed us to feel like we could at least face them a little better because we were facing them together.  It was the equivalent of throwing fear in the dryer for a couple of hours: shrinkage ensued.

And then, there we were, my parents and I, sitting on my bed one night talking about it again for maybe the third time in as many days, and not even crying that time.  Or, there I was, dropping it into a conversation almost casually: “…because if I die while Georgia is still really young I want to try to make sure she won’t turn it around and make it her own fault, the way kids think its their fault when their parents get divorced.”  And there I was, yes, blogging about it to the world at large.

(Okay, seriously, blogging about it…  Do you have any idea how naked I felt? It was like streaking through a stadium – although this little world of my blog actually seems far more intimate, so maybe it was more like streaking through a house party.  But, still.  I dare ya.)

It turns out that this unbroachable, unhappy, unfathomable topic is not so totally taboo after all.  I’m not saying I’ll be bandying it about at cocktail parties (“Nice to meet you. I’m afraid my cancer is going to kill me and I won’t get to live out my beautiful little life. Have you tried the stuffed mushrooms?”) I’m just saying it’s more manageable than I thought it would be. And based on the feedback I’m getting, I’m beginning to think that talking about it has possibly made this nightmare a little less nightmarish for everyone else, too. Talking about it means that it’s okay for people to think about it; they’re not betraying me or failing to have enough hope if the idea of losing me enters their minds.

Anyway, it feels like I travelled a long, long way last week, from a place of fear and darkness to a place with at least enough sunlight to keep a small houseplant going.  A huge part of it has to do with identifying a clinical trial and getting a plan for treatment underway. This is undeniably true. But I also attribute the return of my battle-scarred optimism about my chances of living to getting the subject of dying off my chest.

Who knew it would be so liberating?  And can I continue to address it without becoming a freaky goth person?  Because after the initial gruesome confrontation – after the first time I said the words out loud – it became easier and easier to talk about.  Which meant that it was no longer necessary to try not to think about it.  Which meant, paradoxically, that I and those around me thought about it less.

Like my friend Eden pointed out, it’s kind of a relief to be talking about it now when we don’t have to. Better we face it because we choose to and not because it’s being forced upon us.

In other words, I’m not dying – I’m just talking about it.



Filed under Living with Breast Cancer

Found: A Clinical Trial! Also Found: Glimmer of Hope

Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails.  Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.

For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last. 

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.  

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself. 

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life. 

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.


Filed under Living with Breast Cancer

Am I Going To Die?

It used to come mostly at night, but lately it’s had the audacity to creep in even in bright sunshine. I’ll be going about my business when I get a sudden flutter in my belly, a lump in my throat. Silent flashes of anxiety. Brief, lightning-clear moments of reckoning: My god, is this really happening to me? Something shifts. Everything around me takes on a slightly unreal aspect, becomes slightly less solid. Fear is on the threshold. Don’t think it, don’t let it in. Everything I see is coloured by it; it settles over every surface like a layer of poisonous dust. Everything I do and say, every move I make stirs it up, unsettles it, thickens the atmosphere with it so I can’t ignore it anymore. 

Am I going to die?

Sometimes, by the time I am in bed at night, and the house is quiet, I can barely breathe. Please please make it stop take the cancer away that’s enough now please just let me have my body back my life back let me live…  I try to distract myself, push it down, meditate away from it. Then I let it come, cry, try not to go crazy. My husband holds me in his arms and kisses my hair and wipes my tears away with a corner of the duvet as the Ativan melts under my tongue. Slowly my breathing steadies.  My heart stops pounding so fast. I’m exhausted now and my body will sleep, its only true refuge from the fear.

But it will be back, again and again. No matter how good my good days.  No matter how angry my anger.  The fear keeps coming back.  Am I going to die?

How can it not come back?  How can anyone around me, or anyone who reads this blog, pretend they haven’t gone there in their heads, asked the same question? Let’s admit it. Let’s not pretend that we don’t occasionally get stopped in our raging, planning, hoping, fighting tracks by the thought that this cancer might just kill me, and much sooner than we’d ever imagined.

The thing is, it can feel like even admitting to the fear – admitting that I wonder if this is going to kill me (meaning kill me soon) – is somehow giving up. But I’m not giving up.  I’m not. I won’t, I promise.  I feel like I have to be very clear about that because the theory goes that if you get it in your head that this thing is going to beat you then it does and you die.

I’m not entirely convinced of the truth of that theory – and I certainly don’t think it’s fair to deny someone the right to confront their own fears of death on the basis that thinking about it makes it come true – but in case the people who love me believe it, I’m telling you all now: I’m not quitting.  There’s a difference between letting myself consider the possibility that I might die and calling it quits. 

What I want is to face the fear and then send it back down into the reeking depths from which it comes.  But facing it is such a tall order!  When I admit to myself that yes, this cancer could kill me, the first thing I think of is how hard that would be on my husband, my mom, dad, brother, family, friends, and yes (insert knife into heart here) my little girl. Causing every single person I love pain and loss and sadness is just about the worst fate I can imagine. It makes me feel helplessness and sorrow on a level that is almost physically painful.

That’s the number one reason thinking about my own death sucks – because of how I imagine it would hurt the people I love.

I actually don’t think I’m afraid of death itself. Pain and suffering, yes (definitely, unequivocally.)  But death?  Everyone is going to die.  We know this.  We just can’t wrap our heads around it. It’s hard to be afraid of something you can’t wrap your head around. It’s just too big a concept, just too miraculous and natural and kind of peaceful to actually be scary in and of itself.

What is scary and awful is the idea of the departure gate: saying goodbye to everyone and everything I love.  And it’s less scary than it is just plain awful.  Especially if it’s preceded by suffering and making everyone around you watch helplessly, knowing that they’ll just endure a whole new kind of suffering when you eventually do die… Ugh. Now that’s torment.

So why think about it?  And why, for the love of god, torture everyone by writing about it?

Because it is unfortunately part of my reality now, and if I don’t think about it or talk and write about it, it will drive me crazy.  Like wandering around grocery stores in bare feet and pajamas crazy.  Like putting vegetable soup in the washing machine crazy.  Crazy crazy. Certifiable.

Trying to avoid thinking about it or talking about it just makes it worse.  It makes me feel more isolated, which in turn makes me feel more afraid.

So I’m for tackling this topic head-on and not side-stepping any harsh realities of my so-far untreatable extremely aggressive life-threatening jerkface cancer.  Which means that lately I’ve been saying out loud to the people closest to me “I’m afraid I’m going to die.” 

These are not easy conversations to have, not only because it’s really frigging difficult to talk when we’re crying and blowing our noses so much, but also because there’s not a lot to say about it.  Of course we have all thought about it.  We don’t like to think about it, and we want to believe that I will recover and live a long, healthy life – which I plan to do – but the thought that I might die has crossed our minds, all of us.  

I’m just asking that we let the fear come, look it in its beady little eyes as best we can, and allow ourselves to cry about it, acknowledge it, be angry about it – whatever – just as long as we don’t try to ignore it.  

Somehow I believe I can make the idea of dying just a little less terrorizing if I let myself get familiar with it.  If I can do this I believe that fear won’t colour everything, that it won’t always be lurking and looming, and I might be able to slip out of its grip and move away from it, toward other thoughts. I might actually get to enjoy my life fully, and be completely engrossed in all the things about it that make me want to live it for a long, long time.

At the very least, when I’m with the people I love, fear shouldn’t be allowed to pull up a chair and sit at the table with us, scratching its belly and belching in our faces as we all try furiously to ignore it.  If it shows up we can say, “We see you.  You’re ugly and you stink.  Now get out of here.”

If we’re going to sometimes be afraid, at least we can be afraid together. I want for it to be okay to talk about death as just one of the possibilities because it is one of the possibilities and if I don’t face it, it’s going to make me crazy. It is.  But we can also spend a lot of time talking about the other possibilities too, like beating this thing, finding the unconventional treatment that actually works for unconventional me, and imagining together those happy days in the future when I bore everyone who comes within hearing range with the story that ends with the line “…and then the doctors said, We don’t know exactly what happened, but the cancer is just GONE.”


Filed under Living with Breast Cancer


At first when I began reading the comments to my last post (and getting e-mails and messages) I felt the comfort of it as something faintly glowing in the darkness, like an electric heater in an abyss. Then the compassion and kindness actually started to envelop me.  Now I’m kind of engulfed – but in warmth, not flames.

I’m frankly awed by so much raw emotion and all that big-heartedness coming at me from who knows how many different directions; everything converging in a place so full of empathy and love it’s humbling to find myself at the centre of it. Humbling and overwhelmingly comforting. It’s a strange sensation, watching a phenomenon of humanity at its best and then realizing you’re a part of it. I feel completely blessed, as blessed as someone with no religion and too much cancer could ever possibly feel. You all helped me to open at least one tightly shut eye and consider unfolding myself from the fetal position while I was free-falling into darkness, and for that I am hugely, immensely grateful.

Becasue it was quite a fall. I fell so swiftly into that darkness that I think I hit the bottom not with a splat so much as a bounce. Which would explain why I have the sensation that I’m already coming back up from the depths of despair. Not with anything near the same velocity as that with which I fell mind you, but the velocity is not the point, it’s the direction that counts: up.  

Along with reading your comments and e-mails and texts, I did some other things to help propel myself upwards: went to a salon and got my blonde hair back, escaped the city with my little family, ate chicken pot pie, drank champagne, and began formulating a plan of action…  It seems to be working.  I’m not falling anymore, I’m climbing back up. Slowly, stumbling, and in tatters perhaps, but up nonetheless.

And importantly, up or down, it’s been made absolutely clear to me that I’m not going anywhere all alone. So, if you’re coming with me, buckle up – this part could get a little bumpy.


Filed under Living with Breast Cancer

Speaking of Pets…

A little while ago, I wrote about trying to talk to a child about death and have since been exploring the topic on and off with other parents I know.  Below is an e-mail excerpt from an old friend who actually used to be my teacher and mentor in high school.  Her 15 year-old son Julian underwent treatment for cancer last year (but just celebrated an all-clear CT scat last week – hurrah!!!) and I always say that I would rather be in my shoes (with the cancer happening to me) than in hers (with it having happened to my child) – but the truth is, given the choice, neither of us would choose any of those shoes; we’d gladly walk barefoot forevermore. Over coals, even.  Anyway, I thought her story about talking to her son when he was just four years old about the recent death of their pet rabbit was heartwarming, and captures the poignant innocence and confusion of a child’s perception of death — and the accompanying general feeling of parental ineptitude on the subject!

Our rabbit died (Fluff-fluff, named so by Julian who pronounced it Luff-Luff). She was litter trained and beautiful, by the way. But, she died during surgery which I would never do again. (You’ve heard the expression ‘scared rabbit?’ She actually died of a heart attack after she woke up fixed, and I think she was scared to death.) She also used to ride in the car with us and sit on the table part of Julian’s car seat. We almost caused some accidents by mesmerized and amazed drivers. Anyway, she died and I cried and cried and cried and we buried her in the back yard, in the garden. We had a little ceremony and I frequently mentioned the word ‘died,’ so Julian would get used to it.  About four or five days later, Julian and I had this conversation:
Julian: “Mommy, I think something’s wrong with Luff-Luff.” (Did I mention that this story has some hilarious moments?)

Me:   “Yes, Darling: there is. She’s dead. She died.”
Julian: “I know, but something else is wrong.”
Me:   “Oh my. What’s that?”
Julian: “She’s still in the ground.”
Me:  “Yes, because she died. She’s dead, so she’s still in the ground.”
Julian: “I know, but she’s not coming up.”
Me:  “Coming up? Like a flower?”
Julian:  “Yes. Like that.”
Me:  “Oh. Well, that’s because she’s not like a flower. She’s going to stay in the ground and become part of the earth, but I know some flowers are going to grow on top of her.”
Then he cried on and off for some days. Death is crap. The worse death moment of my life was when Sick Kids gave me a book on how to tell your child he’s…you know what. I was catatonic for several days: then I stomped on, shredded and burned the book.
Anyway, I think you’re doing great with Georgia. [And] I’m rsvp-ing right now to your sayanara cancer party.

Anyone else with talking-to-kids-about-death stories or ideas or tips – please, bring ‘em on.  It takes a village, remember?


Filed under Living with Breast Cancer

Dealing With The D-Word

How do you talk to a 3 year-old about death, especially when you have cancer? 

For a while now, my husband and I have anticipated that Georgia would start asking questions we don’t quite know how to answer; that she would be tuning into our conversations about cancer and possibly even getting confused or frightened.  We know she’s absorbing words like “cancer” and “treatment” and “chemo” – and we don’t know how to help her make sense of them without scaring her. She could easily mix her understanding of my regular visits to hospitals and doctors into what little she grasps about death from storybooks* and movies. We knew we needed to be able talk calmly and directly with Georgia about death and dying – but we didn’t know how to get there.

Enter Morgan Livingstone, Child Life Specialist and Georgia’s new buddy. She came into our lives when I contacted Rethink Breast Cancer with my concerns and asked if they had any programs to support parents of young children.  I was amazed to find out that they could send a specialist to our home to explore through play what Georgia might be thinking or wondering about. 

Morgan and I talked at length before she met Georgia so that she would know how my husband and I feel; we speak pretty openly about my sickness and treatment and prognosis, but we hadn’t figured out how to answer the tough questions.  Morgan has good ideas, and helps us to frame what we want to say.  She tells us we need to use the actual words “death” and “dead” because little kids take things literally and euphemisms just confuse them.  She also advised me to give a name to my illness; to say that I sometimes don’t feel well because I have cancer, and that it’s not like a cold or flu and that Georgia can’t catch it from me.  Above all, Morgan stresses the importance of being consistent: she says that Georgia will come back to a subject over and over again until she thinks she understands it, and that we can’t change our story on her or she will become more confused and less trustful of the subject – and possibly of us.

Smart lady, our Morgan. She’s like a hip, blonde Patch Adams. She comes to visit Georgia every few weeks and they play and talk and make things together…  Later, Morgan and I debrief to get an idea of what might be going on in Georgia’s mind; where she is in her understanding of things.

We all love this woman.  She does amazing work – and Georgia is especially crazy about her.

But still I struggle with how to possibly answer two questions in particular, should they arise: Mama, will you die from your cancer? and What happens when someone dies?


To the first, on a good day I think I can say “We don’t think so. Sometimes some people die from cancer, but I have very good doctors and very good medicine to make me better.” I can say that because I believe it’s the truth. Most of the time.

The second question, What happens when someone dies? is a mighty big one, especially for someone way too young to pronounce Kierkegaard (is one ever old enough?) or know what “theology” means. Then there is the problem of my husband and I having rather ambiguous beliefs and zero affiliation with institutional religion.  We don’t do church, mosque or synagogue, and we think white folks who shave their heads and drape themselves Buddhist robes are a little goofy, but we’re pretty sure they’re at peace with their pretentions, so more power to ‘em.  Actually, I envy anyone who subscribes to any faith, because I’m sure it is a great comfort to have a deep reservoir of belief to dip into in dark times.  Basically, my policy is, as long as you don’t get all fanatical with people who don’t share your beliefs, then go for it: get your faith on.

But, formally faithless though I may be, I do firmly believe in the soul.  And after much searching of it, and no small amount of discussion with my cancer shrink, mom, and husband, I have come up with this answer to What happens when someone dies:

“We don’t really know. Different people believe different things happen when we die. You can ask them what they think too. Like Glamma (Georgia’s grandmother) – she believes we all go to live with the angels, and that might be what happens.  I do know that when someone dies we can’t see them or hug and kiss them anymore. But even though you can’t hug and kiss them, they never stop loving you and you always have them in your heart, wherever you go, forever.”

That’s my first draft.  I’m still working on being able to get past the part about not being able to “hug and kiss anymore” without completely choking, because I can’t imagine a time when I can’t hug and kiss my Georgia, and all the other people I love so much.  And I hate to imagine a time when they can’t hug and kiss me.

Sure enough, the other night I very nearly had to deliver that little speech. My husband was working late and Georgia and I were curled up together watching the animated movie “Up” (a safe-enough sounding title, I thought) when of course the man’s wife up and dies and Georgia asks:

“Is she dead?”

“Yes, honey she died.”

“Was she in the hospital?”


“Did you die?” (This, presumably, because I go to the hospital a lot.)

“No, I’m alive, I’m right here with you. People go to the hospital for lots of things, like to get better and fix boo boos.”

“Why did she die then?”

“I think because she was very old.”

“Why is that man sad?”

“Because he loves her and he can’t see her anymore.  He can’t hug and kiss her anymore.” (Face turned away, keeping voice steady… or steadyish.)


“Because when someone dies that’s what happens: you can’t hug and kiss them or see them anymore, but you can still love them and they always love you.  And you can still talk to them.”

Thankfully at this point the old man in the movie corroborated my explanation by addressing a photo of his dead wife, God love him.  Then the story continued on another path, and she was absorbed in it once again. “What’s that boy doing..?” 

Whew! I silently sighed my relief as she moved on.  For now.  The questions will be back again. And I know I need to be ready, or as ready as I can be. 

Onward, brave soul – this is motherhood and you signed up for it.  But keep the Kleenex handy.


*By the way, has anyone else noticed that almost all the Disney princesses are motherless? Seriously, what is up with that? It’s bizarre enough that they all look like strippers, but strippers with dead mothers? Creepy…. 


Filed under Living with Breast Cancer

Never Let Go of the Potato: What to Say When Someone Has Cancer

This post is a follow-up to my hugely unhelpful and paralysis-inducing post Ten Things Not To Say To Someone With Cancer. In an effort to make amends for freezing the tongues of well-meaning loved-ones, I’ll provide a quick round-up of some of the best things anyone has ever said to me concerning my cancerousness.  Some are originals, some are quotes – for various reasons they’ve all worked for me.  Herewith, in no particular order, some of my favourites:

  • “Never Let Go Of The Potato” My French brother-in-law enthusiastically offered up this Louisiana expression — lâche pas la patate — freely admitting he had no idea what it meant.  I like it for its absurdity and passion, like a slogan Che Guevara might have shouted, fist in air …if he had been a revolutionary, um, potato farmer.  But the point is, if the patate in question represents life, well, then I vow to lâche onto it with all I’ve got.


  • I feel sorry for the cancer.” I know I’ve mentioned this one before – but my friend Ben’s delivery was so good I felt like Al Capone.


  • “When in hell, keep walking.” A version of Winston Churchill’s “Keep Buggering On” which is another of my absolute all-time favourites.


  • “For myself I am an optimist. It does not seem to be much use being anything else.” Truly, I could do a whole list of Churchill quotes, god love the old soak.  This one came to me from my friend Scotty Douglas.  


  • “I’m not only here for you, I’m in-cancer’s-face here for you.”  And its true, she was, and is, and I can’t begin to tell you how I love her for it.


  • “Yes, we’re Lifers, but it sure beats the alternative.”  This, from a friend with the BRAC cancer gene – who has so far beaten both breast and pancreatic cancer, thank-you very much – in response to my whining that we were stuck dealing with cancer for the rest of our lives. Her point was, better to spend your life fighting, than not to have a life to spend at all.


  • “In the words of Bruce Cockburn, “We’re gonna kick at the darkness till it bleeds daylight!”   I could have posted this friend’s letter in its entirety, it was so on-the-money for my headspace that dark day (and so many days since!) but it was just so well written I’m afraid that might lead to someone offering him the book deal I want for myself, so all you’re getting is this great Bruce Cockburn quote.

There are more, so many more.  And the writers/speakers of these things are brave souls – all of them – for finding their own way to tell me I’m loved and not alone at times when I need to hear that more than anything.  But in fact, sometimes just saying “I love you.  You’re not alone, I promise.” is the most powerful thing you can say.  That is, as long as you don’t go off and forget that you promised to actually be there.

I think this would be a good list to keep going.  From time to time I’d like to post round-ups of things both well-meant and well said on the maddening subject of my having cacner.  There are actually so many of them that they effectively eclipse the many things that were well-meant but catastrophically said.  And if anyone out there wants to contribute to this round-up of What to Say to Someone with Cancer, please do – I’ll collect as many quotes as I can, and together we’ll post something that will liberate all those poor people who live in fear of saying the wrong thing, especially those I drove into total verbal paralysis with my Ten Things Not to Say post.  Perhaps we won’t be providing snappy one-liners to throw out at cocktail parties when the subject of cancer just happens to rear it’s buzz-killing head, but I think it could still be really useful to share what helps (and what doesn’t.)  You never know what’s going to work for someone when she or he needs it most — be it the person with cancer or the tongue-tied loved-one.


P.S. By way of explanation of my recent absence from the blogosphere: I’ve been away — and I’m going away again (escaping up north, with my little family and some friends!) which makes me a very happy woman and a very delinquent blogger.  Apologies – will be less delinquent next week.


Filed under Living with Breast Cancer

10 Things Not To Say To Someone With Cancer

You’d think having breast cancer would give me some idea of how to react or what to say when I hear that someone I know has cancer, but it doesn’t seem to work like that.  I’m still sometimes just as mute and aghast as the next guy. But — at the risk of paralyzing you further when you are next faced with talking to someone with cancer — I can help with what not to say.  Here are some pointers:

1.  “Don’t worry, you’ll be fine.” Please, make an effort. Use your imagination.  And above all, don’t be dismissive of the person’s legitimate right to feel totally freaked out.  Cancer is serious business. It’s Darth Vader, the Bogeyman and weird Haitian voodoo hexes all rolled into one.  Let’s respect the fear, but nurture the hope.  Try telling the person that you’re sending her prayers/energy/good mojo/whatever. Plagiarize — grab a quote from someone she’s inspired by (Winston Churchill’s “Keep buggering on” works for me.) Or, if you can pull it off, make her laugh, like my friend Ben did when he said: “I can’t believe it picked you… I feel sorry for the cancer.”

2. “My cousin had cancer and she never missed a day of work, even when she was having chemo.”  Well, la-tee-da! I hate her already. This is called Lance Armstronging.  We are not all going to win the Tour de France 150 times during our cancer treatment.  I do understand the intention to show by example what is possible; that a person can beat her cancer and it need not even slow her down, rah rah sis boom bah.  But go gently, brave cheerleader, if you’re going this route. Avoid Lance Armstronging.

3.  “You should try a macrobiotic diet/seeing my guru/eating all your meals while standing on your head/etc.”  There are many things outside of conventional medicine that can have amazing results.  If you want to suggest something that might involve a big change for a person with cancer, remember that she might be trying just about everything she can manage already.  You can inadvertently set her up to feel like she’s not really “fighting” if she doesn’t take your advice and meditate with a Shaman in Goa.  If you passionately believe in a certain remedy, try an open-ended approach: “If you’re not really into talking about this let me know, but I heard of something I wanted to share with you, and you can feel free to take it or leave it.” 

4.  “You have to beat this for your daughter/son/kids.”  Oh really? Because I wasn’t already lying awake at night in a cold sweat, just praying I’m going to see my child’s 10th birthday/bar mitzvah/wedding.  But thanks for pointing it out, and adding that extra layer of self-blame if my next test results aren’t so hot… I know that this sort of statement is intended to get the person to draw on her inner parental love-power and pull through for the sake of her kids, and yep, that ferocious love is a pretty potent force.  Nobody, sick or healthy, wants to imagine not being there as their children grow up. Sadly, you can do everything in your power to beat cancer and still not win – but is that because you didn’t love your kids enough?

5.  “I read a study that said __________.” Please see recent blog posts on the dangers of interpreting statistics and studies.  If you read something that is interesting or that you think is important, tread very carefully when bringing it up with someone who has cancer.  Even if you’re a doctor, your information – or misinformation – can have a huge psychological impact, and not always for the better.

6. “Think of cancer as a gift/lesson/opportunity.”  Let me ask you this, oh spewer of bunk, which kind of gift would you prefer: a bracelet/flowers/spa treatment… OR a disease that robs you of your health, job, hair, vitality, fertility and possibly your life?  Need some time to think it over?  Let me tell you what I would choose: not to have cancer ever again anymore for the rest of my life.  That is a gift. However… there was a woman I knew and admired and loved like a second mom, and she used to refer to her cancer as “a gift wrapped in barbed wire.” This acknowledged that the experience of cancer did bring many positive things (inner strength, deep connections with other people, perspective on life – whatever) but that it was painful and hurtful and excruciating to get to those things. So in Mary Sue’s honour, I will allow this: if you really, really insist on suggesting that cancer is a gift, please emphasize that its one that comes wrapped in barbed wire and rolled around in a lot of crap, resembling a giant, spiky and foul-smelling truffle. 

7. “Should you be having that glass of wine / cheeseburger / Marlboro Light / triple sundae with chocolate sauce / tequila body shot?”  (Gosh, that does sound like a good time, doesn’t it??) OK, we all know that there are things that aren’t good for us; things that studies show are linked to different cancers; things that we should avoid.  Personally, when I indulge in these sorts of things from time to time I do so because I want to feel normal.  Because they make me happy.  Because I’ve had a bad day, dammit. Whatever the reason, I probably already know I shouldn’t be indulging, and I probably don’t need you to call me on it.  My standard line is always, “You just worry about yourself, I’ve already got cancer.”

 8. “Stay positive, it’s all in the attitude.”  Before you say this, consider: Have you ever tried staying positive when all your hair falls out and you’re afraid of dying?  Actually, this statement is not necessarily a no-no, but it’s a really tough call, because while keeping a positive attitude is important, it’s not necessarily going to affect your longevity.  Apparently it’s authenticity that counts – feeling what you’re feeling when you feel it.  Nobody can be positive all the time, so why should someone with cancer be able to constantly maintain a chipper outlook?  Instead of telling someone her health depends on her positive attitude, just try doing what you can to make her life easier when she’s feeling like crap.

9. “We didn’t invite you because we thought you wouldn’t be up to it.”  Don’t. Ever. Do. This.  Always invite the person with cancer even if you know she’s bed-ridden.  Make sure she knows that there’s no pressure to attend, but that you wanted her to know she’s included anyway. Keep inviting her to everything you would if she weren’t sick – the block party, the girls’ lunch, the political rally, the tarts-and-vicars soirée – everything. Let it be her choice if she can make it or not. You’ll be making her feel that she’s still part of the world; still herself.  And besides, you never know when she might actually be up for one of these events.

 10. “So-and-so said that getting your kind of cancer at your age is the worst because it means your chances of survival are terrible, and I was like, Oh this is so upsetting, why are you telling me this??” Why indeed, would anyone ever tell anyone that? Why would someone then recount it to the person with said “terrible chances of survival?”  Yet someone really did say this to me once, without even realizing what she was saying. And I love her still, in spite of it. 

I guess I wanted to end with that one to make the point that you can’t really say the wrong thing if your heart is in the right place.  I mean, you can obviously (and quite spectacularly!) but it’s not the end of the world. And it shouldn’t be the end of a friendship.  Love is clumsy sometimes. There’s no perfect thing to say, because everyone is different, and everyone’s cancer is different.  Maybe the best approach is “I love you and I hate that you have to go through this, but I’m here for you.” 

And then don’t forget to actually be there.


Filed under Living with Breast Cancer