Tuesday, October 28, 2014

The Amy Winehouse House

This is one of my all time favorite posts. I wrote it at the start of John's cancer tour and it still makes me smile to see the fierceness I found for myself in CancerLand:

The Amy Winehouse House             

A couple of weeks ago we visited a local cancer support center to see what services  might be available. The house is lovely and there are many activities, support groups, yoga, shared meals etc. But about 30 minutes into the orientation I picked up the whiff of overriding condescension that accrues around cancer. Part of it is the pastel and pretty approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone in the midst of a psychotic break. The other hint at condescension is the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by the long, deep gaze, which immediately feels like someone told the staff how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to make dam sure you know you are seen.

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At the cancer center, the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make smoothies!!” Smoothies.  As I told John on the way home, “I have never made a smoothie in my life so why would I make smoothies in someone else’s kitchen with a group of strangers just because you have cancer?”

That smoothie was the turning point for me and it set me to thinking about the kind of cancer support place I’d like to create.  So here is an introduction to my new cancer support organization: The Amy Winehouse House:

The Mission of The Amy Winehouse House is: Fuck Cancer

We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At The Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were an ass before you got cancer now you are an ass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover.

All activities at the Amy Winehouse House are optional and include:

Making martinis
Strip poker night
Learning how to hot wire a car
Our book group is currently reading “Snuff” by Chuck Palahniuk
We have a smoking room
(if you have cancer and are going to die we want you to enjoy a cigarette on us.)
On Saturday nights we have strippers. Yes, for girls too.

And we certainly do have drug education.  We think of this as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score some medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.)

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hate Lance Armstrong (We call him “One Ball” around the House.) We have bracelets too, but ours say, “Fuck Cancer.”

Wednesday, October 22, 2014

Juggling Work and Caregiving

Last week I attended the conference on The Working Caregiver and posted here some of the great info I received from that conference. I also met Amy Goyer who is the Family Caregiving Expert from AARP.

Her presentation was powerful as she detailed her long career in marketing and communications while caring for both parents thru long, serious illnesses.

Amy shared with us--and I shared with you--the resources for caregivers on the AARP website--and that fun Public Service Announcement with Jeff Foxworthy. But here is more:

Amy has also written a book about being a working (employed) caregiver and all of the challenges that come with having a job out side the home while having a huge caregiving job at home. Her book is called "Juggling Work & Caregiving" and it is FREE! Isn't that great.

But even better it is free and easy--you can download on Amazon a pdf or right to your Kindle.

That's the kind of practicality a busy caregiver needs.

Here is the link below: Click and get your free copy of Amy Goyer's book, and share this with your HR Department too.


Friday, October 17, 2014

Are You a Caregiver?

If you read this blog you probably are a caregiver and you probably recognize a caregiver when you see one. But there are many people who do serious caregiving who do not identify with that term. They may think, "Well I'm taking care of my Mom or my wife and that's just what people do."

And while that is true, and sweetly humble, there are serious losses when caregivers don't know they are caregivers.

Caregivers, often men who are caregiving or younger caregivers who don't identify with the term are missing a ton of services and supports that are available to them. They are not getting respite, navigation, or intervention services and they may be by-passing the articles and workshops that would save them time--and their sanity. That has big consequences for them--and for the loved one they are caring for.

Because this has been identified a s a big problem in healthcare AARP has created an advertising campaign to help caregivers to recognize that they are caregivers. I know, I know…you would think…but it's crucial that people know they count.

So here (below) is the link to the first "Are you a Caregiver?" ad that will run in November. It stars Jeff Foxworthy the comedian who is known for his "Are you a redneck?" comedy.

So click below and watch this great fun Youtube ad. And please share it widely so the conversation about caregiving will expand.


Wednesday, October 15, 2014

Helping Caregivers in the Workplace

Today NYSCRC--The New York State Caregiving & Respite Coalition is presenting the annual conference in Albany, New York. There are many workshops, talks, panels and resource booths with tons of information for family caregivers. I will be speaking about the working caregiver and honored to be on a panel with Amy Goyer, AARP's National Family & Caregiving Expert. You can stop by--10 am to 4pm today at The Desmond Hotel.


Friday, October 10, 2014

Loving All of It

A friend of mine told me what a wise friend of hers told her when she was contemplating marriage to the man she had been living with.

The friend told her to get very quiet and “make a list of all the things that upset you, annoy you and that you don’t like about him”. Then very carefully look at that list and ask yourself: “Can you accept each item on that list?”

If you can say yes then you should marry him because those are the things that will not change.

Brilliant advice? I think so.

Friday, October 3, 2014

It's not Pink, It's Lung

Somehow we just keep finding ways to ignore this fact: The biggest killers of women are heart disease and lung cancer. But now, in October,  the pink tsunami begins and we are saturated with pink hues and the fear-based marketing of breast cancer awareness.

But please pause for a minute and consider lung cancer. Yeah, the one that (after colon cancer) no one wants to talk about because it's gross and because we still (come on!) think it only kills smokers. (No it doesn't).

Here, in the New York Times article below (click the link) is an important idea about reducing deaths from lung cancer. The authors McKee and Salner are radiation oncologists. This is public health information.

After you read this we'll talk some more about the cancers that aren't pastel and that don't sell lipstick.


Thursday, September 25, 2014

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.

Helping Employees Who Are Caregivers