The Vagina Dialog--What No One Tells Women Who are Caregivers

There are so many things that go unspoken in the realm of couples and cancer care. If you are a female caregiver and you are caring for an intimate partner or spouse pay attention to this:  You need to keep dilating your vagina.

I was going to use gentler language but really, isn’t euphemism half the problem in Cancer Land? And I didn’t want to use baby words for vagina. I mean, how many times do you have to see “The Vagina Monologues” to know that women are powerful when we call things (our own body parts) by their correct name.

So, if your male partner/lover has cancer there are some things that you need to do that do not involve binders or calendars or tote bags. Your partner may have surgery and chemo and maybe radiation, and so, no, he’s not in the mood for sex and neither are you. Yes, you can have oral sex—for you and for him. And manual stimulation is also very nice. But for all kinds of reasons you might not have intercourse for weeks or months.

And all that time you might think, “Well hey, when he feels better we are going to get it on!” You might imagine the night when it’s possible and he’s ready and you have new lingerie and he has new meds, and the setting is just right—there is arousal and humor in equal measure, and so you turn down the lights and begin.

But all of a sudden no one is laughing and you might even be crying because trying to have intercourse hurts! And it’s you who is hurting not him because now you are too tight. So, you think, a little foreplay and some lube will fix that. But it doesn’t. Odds are good you will be sad, mad maybe scared, embarrassed and definitely confused.

Who saw that coming? If you are over 45 and you do not have intercourse or use a dildo inside your vagina for any stretch of time then you are not stretching it and any attempt at penetration is going to hurt like hell.

So, you think, “This is what I need to think about while I’m worried about his life and our healthcare bills?” And the answer is, “Yes.” Yes, if you want your sex life to return, and yes, if you want to feel that yummy good feeling again. And yes, because a healthy vagina is important. Vaginal atrophy is no joke. It happens to all women over 50—with or without partners. It happens to happily married couples who skip sex for too long, or who fall out of the intercourse habit. (It happens)  and it happens to couples in CancerLand and you then have heartbreak on top of heath scare—you want to do “it” but you can’t.

So how do you keep your vagina elastic and ready? Well, use your imagination or, even better; use a set of vaginal dilators. No porn shop needed. They are a medical product and your doctor will order them for you, or if you want a faster and cheaper solution: buy a set online. (You can even buy them on Amazon).

There is a link below to one company and an additional link to Sloan Kettering that gives advice on how to use the dilators. But you can also Google “Vaginal dilators” and you will see products from many companies that sell medically approved sets. You need a set that provides several dilators that vary in diameter because getting “fit” is a process. If you have been without intercourse for a long time you will want to use the teeny one (like your little finger) first and then gradually progress to one that is, let’s say, more like your partner.

Please don’t blush or brush this advice away. The older you are the longer it will take to return your vagina to its earlier elasticity. That means the sooner you begin the sooner you will feel like a confidant and relaxed lover again. And here’s a bonus: Doing vaginal dilation plus your Kegels means better orgasms for you.

And that’s a prize you get to keep.

Now, look at this link to Sloan Kettering:
http://www.mskcc.org/cancer-care/patient-education/resources/how-use-vaginal-dilator

http://www.soulsource.com/products/silicone-vaginal-dilators/

Helping Employees Who Are Caregivers

Letting Go into Tigers

What are we now but voices
who promise each other a life
neither one can deliver
not for lack of wanting
but wanting won’t make it so
We cling to a vine
at the cliff’s edge.
There are tigers above
and below. Let us love
one another and let go.

-Eliza Griswold

Rethinking Early Cancer Detection

For so long we have been taught that early detection was the answer. The earlier the better and the earlier the more lives saved. Now, it seems, that may not be true. As I have reported here before (We All Have Cancer-August 7th) we all, in fact, have cancer cells in our bodies all the time.

The dilemma is that the earlier we detect the presence of cancer cells the faster we get "treated" (surgery, chemo, radiation) and the faster we get disabled by cancer's many treatments. We do know that many cancer patients die of the treatment not the cancer. So what do you do? And now what should your doctor do?

This is complicated science and complicated ethics. There is now enough longitudinal study to show that 30% of women diagnosed with breast cancer would not have died even without any treatment. (The slow growing cancers) . Ok, maybe that's worth the risk versus loss. But 60% of prostate cancer is over diagnosed--meaning those men may have had disabling treatments that were unnecessary.

But how do you know? What is your risk quotient?

There is some complicated science here. As if cancer isn't complicated enough. So this article in Sunday's Wall Street Journal is worth reading. And sharing. And discussing. It may help you ask more and better questions of your treatment team. It might help you manage the fear.

The link below is to the full article. If you have any trouble with the link simply Google: "It's Time to Rethink Early Cancer Detection". Wall Street Journal.

As the article says, language is a big factor. We haven't changed our definition of cancer in many years even though medicine has progressed. And the C word scares us into acting fast when sometimes it seems we should think more slowly.

http://online.wsj.com/articles/some-cancer-experts-see-overdiagnosis-and-question-emphasis-on-early-detection-1410724838?tesla=y&mod=WSJ_business_IndustryNews_DHC&mg=reno64-wsj&url=http://online.wsj.com/article/SB10001424052970203523204580113491950100232.html?mod=WSJ_business_IndustryNews_DHC

More About the Book: AfterShock

A few days ago I wrote about the book, AfterShock by Jessie Gruman, Ph.D. It is such a perfect handbook and bedside/tote bag companion for day one to day 100 of any serious health diagnosis.

If you or a loved one gets bad news about cancer, heart disease, stroke, ALS, MS etc. This might be the best, first thing to read. The first chapter is on shock and can help you normalize—and manage –the unmanageable feelings and crazy thinking.

Each chapter is short—therefore readable by someone in shock or crisis, and her language is straight. She does not use the word “cuddle” once. She explains what to ask the doc, what to ask the nurse, what to ask your family and what to care about and what to ignore in the short run.

AfterShock has a chapter on work: what to say, who to tell, how to proceed with Human Resources, and what your situation may be like from the HR and coworker perspective. It helps to know that.

One of my favorite lists that Gruman includes is the Personal Health Kit. I love seeing this here because it took me a year to get my chemo/caregiver kit just right. This is the bag (shoulder straps please) you will take to every doc appointment, test, chemo visit and lab. In addition to the obvious medical stuff you include your wrapped candy, treats, pens, book, pashmina, cardigan, phone list (better than your phone directory), phone charger, and sunglasses. (Yep, at least once you’ll need the sunglasses and you will have them right there.)

As I mentioned the other day, this is a book to buy and have on hand. If you are over 40 someone you know will get bad medical news this year—friend, neighbor, co-worker, family member. And you will have the perfect thing to give them on their first day of after shock.

What to Do When You Get Really Bad News

You may remember how you heard it.

 Were you in the hospital? A doctor’s office? Did you get a phone call? Maybe it was well and compassionately done, or maybe the doctor fumbled the news and blurted out your diagnosis or prognosis.

What so many people have said was how quickly the fog descended. They remember the dissociation and fear flowing on top of reason. When I received my cancer diagnosis I was young (in my twenties) and alone and massively in denial. I was more concerned that my married “boy friend” not know about my health issues. I definitely did not have a list of questions or a notebook or a plan.

When John got his preliminary cancer diagnosis I was in the curtained room of the medical suite, and when he got the definitive diagnosis of Stage Four cancer I was there in the new surgeon’s office as well. We were both shocked, both times—sure that such a healthy, fit guy with zero symptoms could have such a serious cancer gobbling him up.

I began writing “Love in the Time of Cancer” that year to process my feelings, to document what it was like to be in love and cancer at the same time and to become a new and better resource for others than I had been able to find for us.

You’ve seen here lots of helpful websites, articles and books. Today I want to suggest a book that is new to me that you will likely want to have handy for your family or for a friend or coworker.

The book is called, “After Shock—What to Do When the Doctor Gives You a Devastating Diagnosis.”  The author is Jessie Gruman, Ph.D. She is a scholar, researcher and the founder of the Center for the Advancement of Health—an independent health policy institute.

This is the book I wish I’d had and the book your doctor should hand you but probably didn't. And this is not just a cancer book—the guidelines, checklists and stories are helpful for a diagnosis of heart disease, stroke, multiple sclerosis, ALS—and of course, cancer.

I think this book is also something you can do for a friend or coworker when you have no idea what to do or when boundaries prohibit getting too involved—maybe at work or with an ex etc.

In the next few posts I’ll share some of the highlights and what I think is especially helpful from “After Shock”.

What Playing Golf Taught Me

Golf Lesson

It’s the little things.

Shifting my weight to my right foot. Not dropping my left shoulder. Not lifting my right hip.

Leading with my hands. Trusting that I'll hit the ball. Going for it.
Staying focused.

Laughing.

Sex Lesson
It’s the little things. 

Shifting my attention to his body. Not worrying what he thinks.  Lifting my gaze to him. 

Loving my body. Trusting that it will happen.
Going for it.
Staying focused.

Laughing.

Keeping Secrets from Your Partner

Does this topic make you nervous? It makes me nervous, I know that.

It might be who you spend time with, or what you spend money on, or how you really feel about your ex or your partner's mother. You might have a big secret like never having an orgasm with your partner, (no cheating just vibrators), or you have a seemingly less harmful one like you say you are vegetarians together  but you eat burgers when you are alone.

Are they secrets or just nobody's business? It's about the relationship--you know that. I have lied about clothes I bought, when I shopped, and yes, sometimes who I saw that day. What he doesn't know can't hurt him--I actually believe that's true. But what I know for sure (me and Oprah) is that what he doesn't know will usually hurt me.

I have had to learn that over and over. My secrets become my paranoia:  I decide not to mention the card from my ex and a week later I find myself wondering what he's reading on his phone. If  fake an "O" I'll  later wonder if he's having as a great a time in bed as he says. It always comes back to burn me and that, inevitably hurts us.

Now here are the facts so we don't feel shamed and alone in this: The Normal Bar--a statistical study of American relationships --reports that 43% of men and 33% of women have kept major secrets from their partners. And even 27% of the happiest couples (studied and confirmed happy) keep secrets from each other. The most common secrets include emotional and physical infidelity, masturbation, shopping and spending, and secret eating, smoking and drinking.

Maybe the criteria for your secret needs to be: Why and I keeping THIS secret, what do I fear would happen if I kept this behavior but not in secret, and what am I risking if and when this is revealed?

Stand Up to Cancer on Friday September 5th

Mark Your Calendar and plan the snack menu: The celebrity hosted and star-studded tribute to cancer returns on Friday September 5th at 8pm. Yes--it's a fund raiser and packed with teary tributes and fashion moments and certainly some good music--so watch it as entertainment and to see cancer and cancer research get center stage treatment.

Trigger alert: The "battle" and "war" metaphors will get a work out, and the conceit that if cancer is cured no one will ever die will be played. But still, even with that, September 5th will be cancer's night so I'll suspend my rant for that good production.

 Be sure to Stand Up, and sit down, to watch.

Here's a link with more info:http://www.standup2cancer.org

The Family Caregiver at Work

I had a conversation with a new colleague today about caregivers in the workplace. She’s an HR (Human Resources) professional and we were talking about how many people are family caregivers and are working full-time.

It’s incredibly stressful we agreed, and we agreed that HR departments or senior managers need to know the ins-and outs of caregiving simply to better manage this big workplace issue.

The conversation got me thinking.

As the Boomer Bump moves through these next eight years we do know there are more and more people who are caregiving and many of them are in the “Sandwich Generation”—those who are squeezed by caring for children or grandchildren and also for an older adult. It’s so hard.

We do give lots of props and admiration to those folks but –at work—not a lot of really practical help. A few years ago I developed a Caregiver 101 workshop that can be delivered in an hour, or even better an hour and a half and provided in workplaces for employees.

What is especially hard for caregivers at work—even though coworkers and supervisors may be sympathetic is that there is shame attached to family caregiving. Does that sound crazy? It should be crazy. But it’s a reality. Caregiving is still done in relative isolation so folks can easily have the feeling that they should be doing it better. We have the “made-for-TV-movie” mentality that shows family caregiving as such a loving, dedicated, heartfelt thing to do that family caregivers who feel like screaming, spitting or hitting are sure that they are defective. So who wants to talk about—and admit to—that.

Right.

So at work we have to head that off. For the employees sake which is a caring and right thing to do—but also for the sake of the department, team and organization. Caregiving employees cost money. A lot of money. They need time off, they are distracted, in pain, on the phone (a lot) and they get burned out. They make work mistakes and coworkers get frustrated. A good employee can go “bad” after just a few months of caregiving. And then everyone loses.

So if you work outside the home talk to your HR department about offering a Caregiver 101 class or a lunchtime caregivers support group. There are guidelines for groups that are facilitated and also for those that operate with no facilitator. If you are a manager or director think about bringing a caregiver workshop into your workplace and make space available for a caregiver support group—weekly or once a month. The benefits will return tenfold to the health of your good employees and to your organization as a whole.

You can contact me at www.DianeCameron.info for more information.

The Battle with Fighting Cancer

For years I have battled the idea of battling cancer. I fought against the fight and I declared war on the war on cancer. But now I have read an essay that more elegantly--and eloquently--makes the case and accurately describes that rub when women and men are celebrated for their "courage" in "fighting" cancer.

So today, enough of my words. Instead read this heartfelt and heartening piece by Peter Bach in New York Magazines's The Cut:

http://nymag.com/thecut/2014/08/avoiding-the-breast-cancer-warrior-trap.html

Be a Better Lover

This line always makes me laugh:  “The reason that so many women fake orgasm is that so many men fake foreplay.”

Yep, it’s both funny and true—and now there is proof.

I’m reading the book, “The Normal Bar” which is an “improve your relationship” book, which is completely based on scientific study and longitudinal research. It’s no one’s theory—rather everything the authors address from marital money to the impact of weight gain in marriage is evidence based.

Since I am super curious about all things sexual I was happy to read the chapter called, “Keeping the Flame Alive” in which the authors report on the results of research about what we really want—“we” meaning men and women. What do women want (besides that perfect black skirt)? And what do men want (other than to be left peacefully alone with the remote on the day of the Masters Golf Tournament)?

Well, here’s what years of couples research has to tell us:

What men want most from their partners:

#1 Sexual diversity (new sexual acts)

#2 Less passivity (more passion)

#3 Sexual noises (more feedback)

and….

What women want from their partners:

#1 Foreplay (more touching)

#2 Romance (more loving passion)

#3 Less predictability (more spontaneity and fun)

Isn’t it helpful to know this stuff? Each of those things can be tried, practiced and learned—and talked about. I’m a believer that sensuality and great sex can be learned and yes, re-learned. Even if it’s been a really long time and even if you are hanging out in CancerLand.

Here's a link to the book: http://www.amazon.com/The-Normal-Bar-Surprising-Relationship/dp/0307951634

We All Have Cancer

I’m reading the book, “Anticancer: A New Way of Life” by David Servan-Schreiber. He was one of the founders of Doctors Without Borders and an accomplished neuro-psychiatrist when, at 31, he was diagnosed with a brain tumor. His book is about what he learned about cancer, and cancer treatment and cancer prevention.

Some of what he has to say is not new: the importance of exercise, diet, alternative treatments etc. But what is new is his description of roles we play in CancerLand--the patient’s role in his/her own care versus the doctor’s role. He also gives great guidance on how to sort medical info, nutritional info and he writes a lot about the physiological impact of stress. And the stress of cancer. He’s got lots and lots of facts.

But this is the fact that blew me away: “One hundred percent of people have cancer cells in their bodies after the age of fifty.”

100% of us have cancer after the age of 50. We all have cancer. Again: We all have cancer. In some people it develops into tumors or wild growths that become life threatening, in others it does not. But after age fifty we all have cancer cells in our bodies.

That’s wild and powerful information to process when you think about prevention and what it means to maintain your health but also relevant to screening and tests and it’s a great starting point to start wrapping our heads around our consistent denial or mortality and death. Cause that’s the other absolute health statistic: 100% of us will die.

We all have cancer and we will all die. That’s not really bad news. Freedom lives in that last sentence. It makes me think of Mary Oliver’s poem: “What will you do with your one wild and precious life?”

Writing Aids Cancer Recovery

In my cancer and caregiver classes we do a lot of writing. It's not news that writing is a comfort and an anchor but now we have additional evidence that writing about one's cancer experience can effectively reduce pain, fear and trauma.

An article in the journal Health Psychology reports that ASian American woman dealing with breast cancer experienced better recoveries when they were introduced to the practice of "emotional writing."
Qian Lu, director of the Culture and Health Research Center says that the research was focused on specifically writing about the traumatic aspects of the cancer experience.

“Cancer patients, like war veterans in Iraq, can experience post-traumatic stress symptoms. Many times when cancer patients get diagnosed, they face lots of emotional trauma. There’s a sense of loss, depression, anxiety about going into treatment and how they are going to face the future,” said Lu.

While this particular study focused on breast cancer I can easily imagine related benefits for using emotional writing with all cancer patients--and of course with cancer caregivers as well. The hard part, of course, is allowing yourself time--and permission--to write daily but knowing that it is having a health benefit may allow patient and caregiver that permission for toward the healing benfits of writing.

Here is a link to the full article. Take a look and share with others in your CancerLand.

http://psychcentral.com/news/2014/08/04/breast-cancer-survivors-benefit-from-expressive-writing/73195.html

PS. I am always available to lead a class on Writing for Caregivers or Caregiving 101 for your group or organization.