Friday, April 6, 2018

When Do You Tell Family and Friends About the Diagnosis?

In Today's Dear Abby advice column--in many US newspapers --the question and opinions--about whether to tell or not tell about a serious or terminal diagnosis. The column is in response to an earlier one where a man did not want to tell.

Abby shares her readers thoughts--yes to tell because it may lead to many loving interactions and maybe some reconciliation, or no, don't tell--keep your privacy and yes, we know people do say the most thoughtless things.

All valuable and valid points. Here's a link to the column:

But here's what is not considered: the impact on the caregiver in either scenario.

If the patient does want to tell then that impacts the caregiver, and if the patient does not want to tell
that impacts the caregiver too. Does the caregiver have any "rights" or consideration? That can also go both ways:

Telling can mean more support for the caregiver but it can also mean intrusion and expectations from others that increase the "work load." and not telling may allow the couple more intimacy and privacy but also limit the desired support for the caregiver.

The roles are not equal. The caregiver needs people to talk to. If it isn't from a support group or family--what will be the source of support.

This may be one of the trickiest things for a couple to negotiate in a cancer diagnosis...whose illness is it and who needs what kind of support from whom.

And also a question about workplace issues: if the choice is to keep the secret or privacy of the patient can the caregiver tell at work? how do they access FMLA or time-off to care for the patient.

All this to say it's not one sided or a simple issue, and it carries its own tensions at a time when fear and tension are flowing freely.

Thursday, March 29, 2018

Sex and Cancer--Why We Need This Book

Dr. Saketh Guntupalli and Maryann Karinch have given us a gift. And this may be a gift that you want to give to yourself or to a friend who is dealing with cancer or who is the caregiver of a partner with cancer.

I've written about "Sex and Cancer" before but I wanted to share it again and to also show this brief Youtube video of Dr. Guntupalli talking about why he wrote this book. He leads with the sad but true story that is more common than we realize about how lives are saved but relationships lost because no one talks about sex.

It's a crime.

As a cancer caregiver--and newlywed wife--I had to fight fiercely to save both John's life and the marriage.

And thank goodness I got mad--the result was crazy, sexy advocacy and this blog and a lot of community education. I was determined that no couple would feel as alone as we did the first time we asked, "So what about sex?" and the oncologist said "Have a nice day" and walked out of the room.

I think today I'd be more bold and follow him down the hall and say, "Hey, buddy, I asked you about sex not suicide.:)))

So years later, hundreds of blog posts, many talks and workshops and panels later, here's the book I wish I'd had back then.

Give a click below to listen to this short Youtube video with Dr. Saketh Guntupalli:

Sunday, February 25, 2018

Please Don't Tell Me I Look Tired

Maybe you are trying to be kind. Maybe you are trying to be supportive. Maybe you are trying to validate the challenging experience of a friend who is a family caregiver.  But believe me, when you tell a caregiver that they look tired, you are doing none of those things.

In fact, it’s just the opposite.

You say something like, “Oh honey, you look tired.” Or, “Are you OK? You look a little tired.”

Not helpful.
Not a compliment
Not going to fix anything.

Think about it: What exactly are you saying when you tell a friend that they look tired?

It usually means one or more of the following: dark shadows under the eyes, red eyes, sallow skin, poor posture, saggy facial tone, slumped shoulders, bad or melting makeup, dirty hair, not smiling, low energy, tension in the face or shoulders.

Does any of those things signify attractiveness? No.

So what you are doing when you say, “You look tired” is to say to your friend, “You look unattractive today.”

Is that what you meant as helpful?

Now I get it: You run into your friend who is a family caregiver. You know she is having a hard time and maybe you even know that she’s been tired.

Wouldn’t it be more helpful to say, “You look wonderful today.” Or “I love that color on you.” Or the best: “How are you feeling today?”
And let her tell you the status of her energy.

Because what if—and this happens a lot—she’s having a day full of hope, and it’s one of her better days, and maybe she is feeling the best she has felt in weeks, and secretly hoping she looks good today.

And then there you are, full of well-intended (we hope) compassion, heartily jabbing your caring needle-- “Oh dear, you look tired” --in her balloon.

Don’t do that. There’s no need. There are so many other ways to be kind to a family caregiver.

Wednesday, February 14, 2018

It's Valentine's Day in CancerLand

So, you are in CancerLand on Valentine’s Day?

Yep, that sucks. It’s awful. I know; I’ve been there. 

But you do not have to surrender to 5FU and all her crazy chemo cousins.

You can have Valentine’s Day and romance and cancer. Here’s how: 

Remember how Valentine’s Day worked before cancer.

Shed one tear remembering that, and then laugh. Find something to laugh about. Call up your true love and reminisce together. 

Make a Valentine. If you can get out, buy a pretty one. If you can’t get out (friggin’ 5FU) then make one: paper doilies, red Sharpie, tear a story form the newspaper, write on a playing card (yes you can ruin a deck of cards by taking out the King or Queen of hearts).

 Drop your expectations. Like a hot potato—drop them. This is Valentine’s Day in a new country: CancerLand.

Think about love, and email love and text that love. There is so much love in CancerLand and with your partner, state it clearly. You have seen and felt love so grand and so different than people who have never visited CancerLand. Claim and celebrate that love. Explicitly.

People around you may be afraid to ask, “What are you guys doing for Valentine’s Day?” like they are asking other couples. Shame on them—announce what you are doing. Stare down their fear. 

Things to keep: affection, conversation, chocolate, cards, flowers, bad poetry, good poetry, and romantic comedies (TV listing are crammed with romantic movies tonight.)

Things to lose: expectations and projections

Things to negotiate: a good meal, gifts and sex. (be creative and open-minded with that last word.)

Refuse to surrender: your relationship, your coupledom, your happiness. 

Sunday, February 11, 2018

I Married a Canadian

We were on vacation in Northern Ontario. It was midnight in the little village and no cars had moved for hours. At the crosswalk I step into the intersection and feel a sudden tug on my arm. As Mr. Cameron pulled me back to the curb, I look up to see that the signal says, “Don’t Walk”.  Smiling I stand on the silent sidewalk and wait. When the traffic signal glows its approval to cross we step out carefully and correctly; I laugh. This is the kind of thing that happens in a mixed marriage.  I married a Canadian. 

Hockey, beer, donuts, moose –these stereotypes, all rooted in Canadian reality are funny to  

We especially like the accent, the lilting up and down of Canadian speech. In just a few hours in Ontario I am imitating my in-laws, “Will ya go to the lake, eh?” But I also know that the final “eh” on Canadian sentences and obeying traffic signals are related. The Canadian “eh” is not just a conversational tic. That uplifting extra syllable is an invitation to consensus, to agreement, and to keeping the order.

Keeping order is one of the greater aspects of Canada that we Americans-- so nearby-- miss when we think “Canadian”. Canadians –motivated by a concern for a “common good” are more orderly, law abiding and considerate than we. It’s not because they are nicer, but consideration of one’s impact on others is a strong cultural value.  

Speech patterns give more than a clue to this difference. The histories of our nations are echoed in how we use our common language. There are very few declarations in Canadian dialect. Declarations invite challenge. This makes sense when you remember that Canada did not have to struggle for independence as Americans did. Britain approved Canada’s confederation in 1867.  So, you can hear how the inflection, that final “eh” leaves the conversational door open with space for another’s thought.

For example, while visiting we met a young man who was dating a niece. He was not as bright as the family might have liked. But as I was about to blurt, in my American declarative, “He’s an idiot”, my sister-in-law said in her Canadian lilt, “Ya say hello to him and he’s stuck for an answer, eh?” Message delivered; door left ajar.

Americans however are poised for a fight. You can hear it in our speech with its tone of certainty and downward inflection; we are always staking a conversational claim. Even the most pacifist of us hold our opinions –and our right to them—like guns.  This also comes from our past. We arrived here fighting. 

This is also why the gun control issue seems easier to Canadians. Friends in Ontario shake their heads at our debates and say, “Such a big fuss, eh?”  For us the gun question is emotionally charged because at a deep level we remember fighting for our land and freedom. 

It may be around the idea of freedom that our look-alike cultures diverge. My husband and I have a regular debate about freedom. I say Americans have more freedom: We can be and do and say whatever we like. It’s freedom TO. But, says Mr. Cameron, in Canada freedom is seen as freedom FROM. The Canadian consideration for the common good allows Canadians relative freedom from violence, from crime, and from poverty. 

Because Canada is a non-litigious culture Canadians are especially free of the kinds of legal hassles that cost Americans so much time and money.

These differences run deep but they’re obvious when you lay the historic values side by side. We salute “Life, Liberty and the Pursuit of Happiness.” There is a win-the-west, win-the-war feel to it. Then picture Canada’s: “Peace, Order and Good Government”. Can’t you just see people cueing up and taking turns, and leaving room in the conversation for the other guy?

Canada is not a land of Boy Scout, do-gooders of course. The very contradictions make you love ‘em, eh? Theirs is a mostly non-violent culture whose national pastime—hockey-- knocks the teeth out of every male over nine years of age. And while living surrounded by natural beauty and wilderness air Canadians smoke themselves to death. We joke that Canadian restaurants offer two seating choices: Smoking and Chain-Smoking.

Married to a Canadian I learned a lot. I learned to care more about the rest of the world as Canadians do and to not run from the room when the world news comes on. I learned that waiting for the walk signal is not passive submission to rules and regs; rather it’s an active expression of community and being part of the common good.

Tuesday, January 30, 2018

Cancer and Sex

So, the silence around sex and cancer was the impetus to this very blog. No one would talk to us. Not a doc or a nurse or a PA...finally a friend got some out of town resources for us, but by then I was so mad, and I started provoking everyone, and I wrote a very mean post about cancer resources folks who think relationships live on the "C" word:  cuddle.

Now there is a little bit more info and I dig for every bit of it and bring it to you right here.

So here is todays offering--a new book, "Sex and Cancer" by Dr. Saketh R. Guntupalli and Maryann Karinch. The link below is to an article in today's New York Times section called Living with Cancer--and Susan Gubar (we love her) writes about the new book.

Take a look, and please share this with family
 and friends who are living in CancerLand--You might save a relationship and a life:

Saturday, January 13, 2018

Chop Wood, Carry Water

There is an old Zen saying:

Before enlightenment: Chop wood, carry water.
After enlightenment: Chop wood, carry water.

It applies to cancer too:

Before cancer:
Chop wood, carry water, buy groceries, pay bills, make love.

After cancer:
Chop wood, carry water, buy groceries, pay bills, make love.

Before and after cancer there are  bills to pay and water on the sink, socks in the dryer, deadlines, aches, pains, worries, bad TV, great movies, Facebook, missed birthdays, cranky coworkers, amazing friends, too much candy, not enough water...

and a poem to write every day.