A backpack filled with stones

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By Caitlin Kelly

Had a conversation this week with a friend facing some serious health stuff. She’s not getting the support she needs and someone who should be there for her is instead adding to her very considerable stress by not being useful and making needed changes.

No one wants a backpack filled with stones.

I won’t be more specific but it was clear to me — as someone who’s had health issues (that oh-so-American euphemism for cancer) since June 2018 — that the minute you get a shitty diagnosis (or lose your job or face the loss of a loved one), your life is now weighted down in ways that may appear invisible to others but are very, very heavy and something you (mostly) alone are carrying.

Shame — especially in the U.S. where being “unproductive”, ill and needy is somehow taboo — adds yet another damn boulder.

Unless you can drop the backpack — and ask for help and count on getting it — having to listen to anything stupid, thoughtless or callous (and there’s plenty of it out there, from friends, family and medical staff) only adds another few stones.

No one wants that pack.

No one wants to carry it, sometimes for months or even years.

In tough times, their pack is already filled with grief and fear and physical pain and exhaustion and guilt and anxiety.

Carrying it isn’t much of a choice, even as others call you “brave” and “tough” and call out “you can fight this.”

If you know someone facing tough times, please do anything you possibly can to lighten their load.

Diminish that pack.

 

Do not add one more stone.

 

“You’re normal”

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Fragility is humbling and frightening

 

By Caitlin Kelly

It’s been a rough week, slowly recovering from my last radiation treatment — October 15 — and still fighting its cumulative fatigue and insane itchiness on my left breast. I was at my wits’ end, crying in public, (I almost never cry anywhere), just done.

I had a follow-up meeting with the radiation doctor, to be told I’d gained (!?) 10 pounds in six weeks and now needed blood tests to see why. This despite seeing my clothes fit more loosely and gaining compliments on my apparent weight loss.

Our GP, thankfully, saw us an hour later and did the tests; (I’m fine.)

But I started crying in his office, weary of all of it.

I apologized for being a big blubbering baby, ashamed and embarrassed by my inability to control my emotions.

“You’re normal,” he said, calmly and compassionately.

Jose, my husband, sat in the room with us, listening as I absorbed this pretty basic fact.

What, I’m not made of steel?

I’m…vulnerable?

Human?!

Kelly’s tend to be (cough) ambitious and driven; three of us won major national awards in the same month, when I was 41, my younger half-brothers then 31 and 18; I for my writing, they for business skills and for a key scientific discovery, (yes, the youngest!)

We tend to aim high, compete ferociously for as long as it takes, (each of my books, later published by major NYC houses, were rejected 25 times), and usually win, dammit!

We keep our emotions very close to the vest and keep small, tight circles of intimates. I don’t really do acquaintance.

 

Being weak, scared, in pain, exhausted and, even worse, letting others see us in this condition?

 

Terrifying.

I’m slowly getting used to it.

Compassion for my fragility is my new oxygen, as much for myself as the gratitude I feel for that shown to me.

 

 

Life in cancerland: 18 tips

 

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By Caitlin Kelly

Some reflections on my having entered — as of June 2018 — a new and sometimes overwhelming world; if useful, please share!

 

You are not alone

You may certainly feel it as you reel with shock and try to make sense of what will happen to you next. My early June diagnosis of DCIS, (a sort of pre-cancer, even though the word carcinoma does mean cancer!) is one shared annually by 44,000 American women.

 

You will likely be in shock and feel utterly disoriented

Even if your prognosis, as mine is, is excellent, you’re stunned.

One minute, you assumed you were healthy, the next…you’ve entered cancerland, filled with sights and sounds and sensations both foreign and unwanted, that you may never have experienced.

What the hell is an aromatase inhibitor?

What are my eight tattoos for exactly?

How tired and ill will treatment make me feel?

 

You face a learning curve

Until you’ve had a biopsy, you don’t know what it feels like, during and afterward. Same for chemo and radiation and other things likely to happen. It’s all new and unfamiliar and a lot to process, physically, emotionally, intellectually — and, in the United States — financially.

 

Ask as many questions as many times, of as many medical staff — including technicians — as you need, and take notes

It’s complicated stuff!

Don’t ever feel stupid or intimidated or rushed or that your concerns are unimportant. Health care includes feeling cared for, not just surgery and medications.

 

People who have never had experience with cancer may behave in hurtful ways

Even with the most loving intentions, people may say things (oh, it’s not that bad!) or do things (send you books about cancer, unasked for) that can leave you even more anxious, scared or disoriented.

They may also tell you to “fight” and “battle” — when (if they don’t know the details) this might not even be necessary, or might not be possible. Ignore them!

This is not what you want!

 

Get off the Internet and listen to your MDs

The first advice my gynecologist gave me — who told me the news by phone — was to not start reading about this on the Internet.

I didn’t and have not and will not.

But I make my living seeking and processing vast amounts of complex information as a journalist — how could I behave this way?

Because I’m human and had to process enough new information as it is!

I also have avoided any detailed conversations about this unless with fellow patients, and not even a lot of that.

 

Some people will flee

This can be painful. It’s them, not you. As one friend (whose wife died of lung cancer) said: “You don’t know what their vulnerabilities are.”

 

Some people will step up unexpectedly

This is a great gift.

 

You will need to let some new people in, even when that feels weird to you

I find this difficult, as someone who’s always been quite private. But without allowing others to know the details of your situation and to comfort you, it’s too hard.

 

Some people will over-share and overwhelm you with their medical story

Shut them down.

This is not the time for you to hear, process and empathize with others’ details and fears. This is the time for you to focus on your needs. That may feel unkind, even brutal. Just do it.

 

If at all possible, find a medical team and hospital you like and trust

You will be spending a lot of time in their offices, possibly daily, weekly, monthly and for many years to come. If you like, trust and respect them, you will feel safe — literally — in their hands.

If you have doubts, find a team you feel good about; this is more difficult if you live in a rural area or have poor health insurance, I know.

 

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You’ll be seeing, and see and be touched by, a lot of people you have never met

That’s another stressor right there.

So far, I’ve seen more than a dozen different MDs, multiple technicians and been to two different hospitals. It’s a lot of new people, and different personalities, to cope with at once — in addition to your diagnosis and treatment.

As one friend told me, you’re spending a lot of emotional capital.

 

Ignore (most) others’ advice!

People will rush to give you all sorts of advice, leads, insights and tips. Everyone’s body is different. Everyone’s tolerance for pain is different.

Just because they or someone they know had a better/worse/horrific/painful outcome, this may not be your experience.

Don’t let their possibly frightening, unhelpful or inaccurate data bombard you while in a weakened physical or emotional state.

 

Educate a few people about your cancer — and let them do the talking for you

It’s time to conserve all your resources, especially time and energy. People who have not faced cancer, and your specific kind of it (what stage, where are you in treatment, invasive, recurring, metastatic, ER+, etc.) have no clue.

Having to keep explaining things to them can be too tiring and upsetting.

 

Do whatever comforts you most deeply

That might mean withdrawing from most social events to save your energy. Hugging your kids or pets. Knitting or playing video games or binge-watching TV, prayer and meditation.

 

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Rest as much as possible

Your mind and body are under assault. Naps are your best friend.

 

You don’t have  to be “brave”

People will tell you how brave you are.

You’re just doing what you have to to stay alive, even if (as I have) you might be fearful and crying a lot to a few people. Even a good diagnosis is enough to shake you hard.

 

Ask for help — and don’t think twice about it!

You may need help getting to and from medical appointments — tests, bloodwork, chemo, whatever. Even if you’re not feeling tired or weak, it is deeply comforting to have a friend or loved one waiting for you when you emerge from whatever it is you faced that day.

Having someone to drive you there and back is a real blessing. Ask for it, and accept it with relief and gratitude. Same for dog-walking, babysitting, food shopping, cooking, laundry.

Love is action.