5. What (Not) to Say

Symptoms:  dry cough, tenderness in right side

Pain level =2

Treatment: capecitabine (oral chemo)

Feature emotion: Generosity

First, I must draw your attention to the wondrous Map of Love we have created together since last week!  There are 150+ hearts so far, from Russia and Qatar, Tanzania and Trinidad.  The little island of Great Britain, where I live, has disappeared under a sea of hearts!  (Here’s the blog post which started it: The Power of Love.) If you would like to be added, just tweet me @vanessalafaye or find me on https://www.facebook.com/vanessalafayewriter/.

I look at the map every day, and my own heart is overflowing.  I had no idea what to expect, and have been overwhelmed by the generosity of strangers.  I’ve received such terrific messages of support, from people I will never meet, in addition to those who I’ve known for a long time.  It’s like that old pop song about sending out a message in a bottle and getting back thousands of bottles.  It’s a revelation and a joy.  You have made Sucksville, UK (population = me) far less lonely.

It’s in that spirit that I write this new post.  For anyone having to watch a loved one die of this hideous disease, or any other which takes them too soon, one of the hardest things is knowing what to say.  A lot of my friends are writers, and even some of them have been stumped by what words to use.

I get that. It’s normal and it’s human and nothing to apologise for.  This is hard for all of us. And I get that it’s easier for strangers, because they have nothing invested in the person they are losing.  A lot of people, at a complete loss, or afraid of saying the wrong thing, choose to say nothing.  From my point of view (and it is only mine, although informed by a lot of patients who I know), this is the worst thing you can do.  Silence doesn’t speak for itself.   Are you overwhelmed by your feelings?  Are you on a long holiday in the Land that Mobile Signal Forgot?  Or are you not giving a shit?  If I count you as a close friend, this matters.  I’m prepared to give a blanket amnesty because this strikes everyone differently and because, hey, I’ve got better things to do, but ‘it’s awkward’ is a fecking cop-out in this situation.

So many friends have expressed their frustration as, ‘I just don’t know what to say to you,’ that I have provided a handy guide to some of the best  – and the worst – things to say to someone with a terminally crappy prognosis.  Some general guidelines:  do use humour, it breaks the tension and makes me feel better, but don’t trivialise;  don’t talk to me about your bunions/heartburn/dandruff or other minor ailment.  These are not equivalents. I reserve my compassion for the big stuff, which I really care about, and your problems are a welcome diversion from my own.  I positively salivate at the idea making something better for someone.  It’s how I get my kicks.  Don’t assume that I can only converse about medical stuff.  I get bored of recounting my latest test results or side effects, which is why I started this blog, so I can just say it once.  I relish the opportunity to discuss at length what a colossal cockwomble Trump is, or why Brexit is the worst idea since the Plague (you can tell I care nothing for politics).  Swearing is welcome.  Diversions make me happy, and being happy is, for now, the only game that interest me.

Before the list, a clarification is needed:  everyone knows someone ‘with breast cancer’.  Mostly that means primary breast cancer, where it has not spread to any other organs.  When you hear about improving survival and cure rates for breast cancer, this is is what they are talking about.  The treatments are awful, but with tumours that are sensitive to estrogen or herceptin, you can look forward to decades of healthy life ahead. Much love to you ladies. How I wish I was still one of you.

Once the disease metastasises (Secondary Breast Cancer), it is incurable. About 30% of breast cancer patients are in this group.  About 30% of them have the triple-negative form, which doesn’t respond to estrogen or herceptin.  I am in that sad group.

14,000 women die every year of SBC in the UK, yet the disease receives only 3% of research funding.  Mean survival is 3 years.  Only 20% of women live for 5 years. Very few makes it past 5 years.  So when you hear about the wonderful progress made in the fight against breast cancer, they aren’t talking about us incurables.

(Note to self:  I am not a statistic.)

This is because, once the disease metastatises, it is still breast cancer – in the liver, in the bones, in the brain, in the lung – but it’s no longer a single disease.  It’s 4 diseases or 5 or 12 diseases, all of which respond differently to different treatments.  So it becomes clear why so little research is done into this, especially us poor triple-negatives.  It’s a really, really hard problem and not enough of us are dying to interest the drug companies.

End of clarification.

WHAT TO SAY

You look well.

I brought almond croissants.

Here’s an article about a new treatment/trial for metastatic, triple-negative breast cancer.  (Yes, it must be that specific to interest me.)

Do you need anything?

I have a cold, so I’d better not come see you. (My immune system is compromised.)

I thought you might like this… (however small, any thoughtful gesture shows you care.)

This sucks, and I hate what’s happening to you.

Here’s a video of animals doing cute/funny things.

 

WHAT NOT TO SAY

I thought cancer made you skinny.

I brought carrots because I know you only want to eat wholesome things.

I heard of a clinic where they cure you by sticking a tea bag steeped in your own urine up your back passage.  Worth a try?

I feel so useless.  (Note: this is not about you.)

*sneeze* I figured a cold wouldn’t phase you. *sneeze*

Please tell me what to do.

Have you figured out what this is telling you about your life?

Here’s a video telling how to cure yourself with good thoughts.

 

My take-home message about this is that anything that shows you care will be welcome, even if it’s not beautifully phrased or even proper English.  A stream of expletives works for me, and makes me laugh.  Just be sensitive to what’s going on in the treatment cycle, when we may or may not be able to take much in, and you’ll be fine.  If you know an incurable, don’t be a stranger.

 

 

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