A Letter to Pre-Breast Cancer Me About What I Wish I Knew

Dear Sue,

On February 6, after two mammograms, one ultrasound, and two breast biopsies, your family doctor will phone you to say you have breast cancer. The days following will feel like you are looking down the barrel of a gun.

Here are 10 things I wish I could have told you — my numb newly-diagnosed self — six months ago:

There is a lot of waiting.

It is better to accept this rather than agonize over it. You are at the mercy of a booking clerk’s phone call at all times, particularly in the terrible purgatories between diagnostics and when you are actually diagnosed, and the time between diagnosis and the beginning of treatment.

Tightly hold onto the ones who show up for you. 

Love the ones you are with. My husband has been my rock. My children are my greatest comfort. Be open to new people coming into your life. (My Twitter friends — many of whom have chronic stuff going in in their own lives — have really stepped up for me, as have my old colleagues from the children’s hospital where I used to work).

Allow your husband and kids to help you. This can be particularly difficult for those of us who are used being the nurturers. You may feel vulnerable and guilty about this, but that’s OK. Be openly grateful for their love.

On the other end of the spectrum, it will be awful to be openly dumped, ignored or ghosted by family and friends. (The same thing happened after Aaron was diagnosed with Down syndrome, but that doesn’t make it any easier this time around). Try not to ruminate on these lost people. Their poor behavior reflects more on them than on you. If somebody says something wrong, shake it off the best you can and consider this article: “How not to say the wrong thing.” It will make you feel better.

Hang onto the little things.

Why? Because they may end up being your big things: the chirping birds, the smell of lavender, the flowering cherry trees, some old jazz on the stereo. There is great value in meditation and simply breathing — I stumbled upon these simple strategies late, but they have been my calming saviors when I was under the radiation machine, waiting for the doctor in the clinic room or just generally freaking out.

Try out different things to help you heal.

Commit to long walks. Attend mediation classes. Ask about relaxation programs and therapy services at your cancer center. Try out a support group. Go for a pedicure or massage. Canadian Cancer Society offers a Look Good, Feel Better Program, which is about wigs and how to apply make-up, but it is a pleasant way to spend a couple of hours. Look into supportive cancer care organizations, like Callanish or Inspire Health or Wellspring.

Short rant: I have been asking and asking about mental health services since early February and not one health professional mentioned Vancouver-based Inspire Health, which offers free classes like yoga, meditation, exercise and art therapy — all of which I totally could have used for stress relief. This angers me, as it feels like I have been left to struggle, which brings me to…

You are on your own to look after your mind. 

I was shocked how little the mind-body connection is considered in the hospital setting, even though science has definitively told us that stress is not good for you. I think the hospital will treat your tumor, but not you. You have to figure out your own support and go outside the cancer agency to find help. (See #4).

Also, hang onto that compassionate member of your health care team (for me, that’s my family physician, who calls me on the phone just to see how I’m feeling). These people are special and rare and can compensate for the other, less kind folks you will inevitably encounter.

Side effects suck.

Side effects are a real thing that took me by surprise. They are also often dismissed as trivial or minimized by clinicians – a hematoma the size of a grapefruit under my arm!

Drug-induced insomnia!

Fear of lymphedema!

A burned and scorched breast!

Weight gain!

Debilitating fatigue!

Permanent radiation tattoos!

What is a big deal for patients is often not a big deal for clinicians. I’ve found that online forums, like Cancer Connections, help; you can commiserate with others going through cancer, or at least read about what to really expect.

There’s no shame in asking for sedation before procedures or anti-anxiety meds.

This is to help you through the terrible time. Always be brave and pipe up because it may not be offered to you otherwise.

Use your voice.

Ask if you would like a warm blanket, or are uncomfortable, or have questions. Don’t forget, in Canada, taxpayers are actually the funders of health care. It is your right to speak up. (Donald Lepp’s essay, “The Art of Complaining: Going Rogue,” has some good advice on speaking up at the system level).

There are many affronts to your body.

These are not things you could ever dream up as a layperson. For instance, when they say they will “inject dye” in you before the sentinel node removal, they mean a person in radiology will actually stab your nipple with a needle full of blue dye and that blue dye will remain in your nipple for months afterwards. There are other indignities: fine wire insertions, scars, bruising, itching and burning. These affronts are weird and will make you feel especially vulnerable and fragile.

So you must, more than anything else, please please…

Be kind to yourself.

My therapist gently suggested I treat myself as I would treat my beloved daughter, Ella. This advice helped. Cut yourself some slack, my lovely. As Brene Brown says, “You are enough.” And as my dear friend Isabel Jordan has reminded me when I needed it the most, “You are the queen, Sue.” Listen to all these wise women.

I’m not gonna lie… this is going to be hard. But you will do it because you must.

Love,
Future Sue

P.S. – Never forget it is love that is going to help you heal in the end.

This post was previously published on SueRobins.com.

Thinkstock photo by manop1984