12 mistakes we make when talking to someone with cancer

Why we need to stop disarming the defenceless
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Why we need to stop disarming the...

Jane Hider

 

 

by JANE HIDER

My oncologist said this to me when we first met: cancer is just the wrong form of energy. This slightly hippie-ish comment impressed me on a number of levels.  But most importantly, it makes the point about what cancer is.

It is part of you.  At its most basic level cancer is a collection of cells who grow uncontrolled or refuse to die.  And how can I fight what is part of me?  I am not engaged in a battle.  It is not a fight.

To me, it is learning to live with what is in me.

What cancer isn’t? It isn’t a blessing, it doesn’t create brave warriors, it doesn’t make us like statistics more.

Here are 12 commonly believed myths about cancer patients (and what you THINK we want to hear from you.)

Myth #1: We like to be reminded there are other ways to die

Is there anyone with cancer who has not had this happy possibility pointed out to them: ‘Well of course we could all be hit by a bus tomorrow.’?  (As it happens I have already had my bus run-in, as a teenager, when my friend Julia pulled me out of the path of an oncoming bus. I feel reasonably sure I will not be having any more bus action in my life).

I could drop dead of a heart attack at my desk, as clients of mine have done.  I could contract a rare parasite and fade away.  My car could be involved in a six car pileup on the freeway.  I could, according to my father, quite easily die from Alzheimers, because did I know that at least four hitherto unmentioned relatives all died of it, not knowing or caring who their family was?  (I think, but cannot be certain, that he was trying to make me feel better telling me this).

Sadly, these entirely theoretical conversations don’t bring me much solace.  I know, having been diagnosed with cancer at 42, that the chances of me dying from an out of control bus are really not quite as good as the chances of me dying of, oh yes, that’s it.  Cancer.

Myth #2: We are all afraid of death

Before I was diagnosed with cancer, if you had asked me how I would have dealt with such an eventuality, I would have been quite definite.  I would have expected to spend a good week crying and wailing, rending my hair and screaming to the heavens, frightened of my impending demise.  Just as when I was a little girl I would lie in bed at night, staring at the black ceiling, trying to imagine what death was like. The absence of life. A big open endless nothing.

Strangely, perhaps, fear of death has taken up increasingly less space in my thoughts since I was diagnosed.   Perhaps the prospect of death, like any scary possibility, can be accommodated if one has enough to time to absorb it. Although I am still relatively young, I have had a great life. I have lived, loved and laughed, and I have few regrets, beyond the usual.

I am afraid of severe pain, of course, and in my darker moments I ponder which kind of metastatic cancer would be ‘best’ to have in terms of pain: brain, liver, lung, bone, or some other organ?  I am afraid of palliative care, of being sent to a home to live my last days away from my family.  And I am annoyed at the possibility that I will miss my 80th birthday.  I have always planned to be a particularly stylish 80 year old, with straight silver hair, lots of cocktail rings on my fingers and a piercing no nonsense gaze.

But what I am truly afraid of, what scares me into white knuckled terror, is the thought of leaving my small children with no mother. That thought haunts me, and gives me a reason to get up on those mornings when my joints are aching, my brain is a dense fog, my scars are stinging and it is all just too hard.

Myth #3: We are brave.

This is brave.

This is my definition of brave. A young man, standing up to his knees in mud, in a line with many others, listening to the ear shattering boom of artillery fire in the distance, flying across no man’s land and falling just short of their trenches. It is midday but the sun can barely be seen through the smoke and rain.  He can smell the pungent air, the mustard gas must have just been released.

Occasionally some artillery will meet its mark, and all of a sudden, hits the man next to the first young man, piercing his helmet and instantly killing him.  The first man looks down at his friend, but he cannot tend to him, or even bend over to close his wide open eyes. They joined the army together, grew up together, and now, will probably die on the same day.  He waits, breathing slowly.  Soon enough, the command comes, to go up and over the trench, and run into the barrage of fire, facing almost certain death.

This is not my definition of brave. Getting up, each day, working, eating and sleeping.  Sitting around waiting rooms reading design magazines which are three years old.  Contemplating the pastel décor of the chemo suite.  Having CT scans, X-rays, heart scans and blood tests. Taking my medication.  Googling alternative treatments.  Reading cancer chat sites and then vowing to never do it again.  Attending various doctor’s appointments.  Spending time with people I love.   Sometimes crying, quietly at night into my cotton pillow so as not to wake my husband, wondering why this has happened to me.

Myth #4: We want to hear the story of your great aunt Iris’s pancreatic cancer

Especially not if she died.  I do understand it is a human need to share and swap stories of similar experiences.  However, it is not reassuring to hear about a complete stranger’s dreadful alarming or unusual death from cancer.

If the stranger is not my exact age on diagnosis and does not have my exact type of cancer, I do not want to know. I especially would rather not hear about how bravely she battled, or how long or meaningful her journey was (see 12 below). But please rest assured, I do already know that many people die sad (or quick) painful deaths from cancer.  Indeed, it has in fact crossed my mind, once or twice at least, that I might die.

The flipside to this of course are the stories of survival. I have heard many of these, and they bouy me and inspire me, they really do.  Unless of course the only reason for their survival was that they thought positively (see 6 below).

We’re not fans of math.

Myth #5: We like statistics

Well, I guess a statistician who is diagnosed with cancer will be okay with them, but I am not.

How, pray tell, does it help me to know that my cancer has a 97% 5 year survival rate if I am the 3%?

Live or die.   Curable or incurable.   Remission or no evidence of disease.  These are the black and white, yes or no options.   And at the end of the day, this is what all cancer patients face.

The 3% won’t be around to care that there are another 97 who survive.  And if I am one of the 97, I will never know, and can never be certain, that my luck won’t change. If not this year then maybe the next, I too may become that 3%.

Myth #6: We need to just ‘think positive’

I had sixteen chemotherapy sessions and a further seventeen Herceptin infusions.  On chemotherapy mornings, driving to hospital in East Melbourne, I would feel progressively more nauseous, even though it had been more than a week since my last session and I had felt fine until an hour ago.  I would almost vomit as I got out of the car, and drag my reluctant body up to the third floor chemo suite.

It follows that I of all people don’t need persuading about the mysteries of the mind-body connection, and the amazing ways in which the way you think can influence the way you feel. But. Do I need to be told to think positive, and assured, evangelically by some, that such efforts will be certain to cure me of this dread disease?

If thinking positive was all that was required, I would like to know why Ellie, 33 year old positive thinker extraordinaire, died of breast cancer just over a year from diagnosis. And why Peter, 68 year old grumpster with prostate cancer, lives to complain another day, two surgeries and 11 years from diagnosis.

I am all for optimism, and have always strived to keep my disposition on the sunny side.   Or if not completely sunny, perhaps sunny with intermittent cloud cover.   But the idea that I, or any other cancer patient, can cure myself just with the power of positive thoughts, disturbs me greatly.  And worse, it puts pressure on me to constantly run an internal override system on my thoughts.

Myth #7: We like to receive dietary tips

When I was diagnosed with cancer I received all sorts of extensive feedback about what to put in my mouth.  Nothing it seems, is more likely to elicit an opinion than the idea that what you eat might save you from a terminal illness.

And the list is long.

Time to forget the simple food pyramid.

No soy (it causes cancer unless you are Asian in which case it might prevent cancer), no dairy especially no cows dairy (they mimic hormones did you know), no red meat (the very worst do not think of eating it), no processed food (cancer feeds on it), no sugar including fructose and so you must limit most fruits (cancer feeds on it), no tinned food (toxins in the metal tin), no tuna (it’s often actually dolphin did you know), no salmon (they can really feel pain did you know), no alcohol (definitely increases the risk of recurrence), no foods ranging from apples to oats to dill (phyto-estrogens therefore might trigger more cancer), no foods with four legs (all meat is bad but you must know that surely?), canola oil (GM food, and who knows what that stuff does to you) and no potatoes, chickpeas, lentils or rice (acid foods and therefore cancer causing).

But the great news is, as people have so enthusiastically pointed out, there are so many great whole foods I can still eat.  And it is of course, quite true.  I can eat blueberries, brown rice, whole green leafy dark plants and sip green tea, all the while plotting my revenge on the myriad foods of the world.

Myth #8: We don’t have superstitions just like other people

I put my faith, my body and my life in the hands of a world class surgeon and oncologist.  I backed it up with exercise, meditation and yoga, changes to my diet and some to my lifestyle and a great Chinese doctor and naturopath.  I have pondered and wondered about the Gerson Therapy, the Budwig protocol and Vitamin B17 Metabolic Therapy and whether I, if I was terminal, would try alternative medicine instead of the conventional plus complementary approach.

But heck, that is not enough.    We are human, and we all have to have our little foibles.  And having cancer does not make them go away. If anything, I am now even more superstitious than ever.

I can barely even tell most people that yes I feel very well today.  And the longer I do this the more superstitious I become that the very instance I admit that I felt healthy and happy I will have some catastrophic relapse into Cancer World.

The same conviction has meant that I have not had my oven cleaned since December 2010, because the day I was diagnosed with cancer was the very day the Man Came To Clean the Oven. He did a great job by the way. But I feel that if I get him back, I will get cancer again. (In case you are wondering, I have cleaned my oven in the last 23 months. But myself, and not very well.)

Myth #9: We are weak and frail, hollowed out by the challenges of treatment

I will not seek to pretend that treatment was anything other than utterly awful.   The list of side effects is endless, and contrary to my initial naïve belief, they do not end when chemo ends.  They continue on, for years after treatment is over.

But through all of that, I found a steel core inside me.  I am not weak.

During treatment I was stripped back, down at my worst, steroid filled, bald, eyelashless, moody, freckly (they came back!!) and 10 kilograms overweight and yet, some days, I felt invincible, like nothing less than a caped crusader.  Indeed, a goddamn super hero.

I, Jane, average mild mannered person, had, at this point in time, survived cancer.  Cancer, my greatest fear of all, had not yet taken me.

My costume would be sleek and silver, I decided.  And my superpower would be invisibility.

On these days, I do not feel weak. I feel like I can fly.

Myth #10: We don’t care about your trivial day to day minutiae

Yes, oh yes I do.

So many instances I would be sitting with friends or family or work colleagues, listening to them rabbiting on about something like a missed promotion, a work dilemma or issues with the renovation when they would check themselves, all of sudden put on Grave Face, and say ‘well of course, it’s nothing compared to what you are going through.’

True enough, a rapacious building contractor or your credit card debt is indeed, not the same as cancer.  But so what?  I am happy to hear about your stuff.  It reminds me of normality. Of my life Before Cancer.    Having cancer has not turned me into a philosopher savant, whose only function is to sit in the shadow of the Acropolis, debating life or death scenarios.

It is the miscellaneous, trivial ephemera which makes us human and bonds us together.  Please don’t exclude me from it.

Myth #11: We believe you when you say our wig looks great

Come on.   Even a great wig looks exactly like what it is.  A wig.  It scratches, it doesn’t move in the wind, the part never changes, it looks odd where it meets my forehead, it is way too shiny and smooth and it looks like nothing more or less than newsreader hair.   I may have bought my wig from the same shop who sold Kylie Minogue and Deltra Goodrem their wigs, but don’t pretend you didn’t know I was wearing a wig.  You can tell. I can tell. We all know.  But we will nevertheless pretend to be flattered that you didn’t realise because we are all in this together. Pretending.

Myth #12: We are on a ‘long’ ‘journey’ during which we are ‘battling’ cancer

I sometimes read the Daily Mail online, to get my fill of red carpet fashions.  Glancing at a story about some English actor who has passed away, I catch the headline ‘Dies after long fight with cancer.’

I click further to read the story, wondering about how long his so-called battle was.   10 years?  Maybe fifteen?   And lo and behold.   Eighteen months.  Let me tell you something.  If you have cancer, eighteen months is not a long time.   It is only just a little bit longer than my treatment duration.    For pity’s sake, don’t call something long when it is in fact, rather short.

Ah, the ‘journey’.  I have mixed feelings about this last one one.  Of course cancer has changed me.  How could it not?  If a ‘journey’ means moving from A to B and changing in the interim, then yes, I suppose I have been on a journey of sorts.  But to me, the word connotes travel, an exotic or epic trip, with a happy outcome.   Cancer does not really feel like that kind of journey.  More like an alien abduction, complete with a new brain, replacement joints and a non functioning reproductive system.

Jane is a lawyer and occasional blogger. On 17 December 2010 she was diagnosed with multi-focal invasive breast cancer (oestrogen negative, HER2 positive). 2 years later, she is still here.  This is her take on Cancer World.

Do you know anyone who is experiencing cancer? Have you talked to them about it?

What do you think?

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