Ambulate! by Joe Q.

This week we have a wonderful guest post by Albany writer Joe Q. A cancer survivor, Joe was prompted to write after reading John’s surgery story here on Love in the Time of Cancer. Here is Joe’s reminiscence:

Diane, I laughed at the "ambulate" part of your blog.  It rang a bell.  I’m remembering the operation to remove my cancerous prostate in the fall of 2008 at a big hospital in Manhattan.

With the midnight staff change, Kathryn, an RN from Dublin, Ireland, asked whether I had walked yet.  Before I could answer, she demanded: "Up!  To the hall!  Walk!"  Another guy on the floor was in the same boat, Kathryn his drill sergeant too, the lament palpable on his face.  So the two of us trudged back and forth from midnight on, catheter, et al, the only consolation being the Manhattan skyline, Chrysler Building and seeing Central Park on one end, and Roosevelt Island and Queens on the other.

Finally, nurse Kathryn relented and we got to bed at 12:30 AM.  

But Kathryn wasn't done yet.  At 7 AM, I knew the drill as she approached, then demanded: "Up!  Walk!"   So the other guy and I trudged back and forth for another 1/2 hour.  

When my wife showed up to drive me home to Loudonville, New York, Kathryn thundered, "He can't ride in a car for three hours!"  But when my wife said that my surgeon approved, Kathryn demanded stipulations.  So at each Thruway rest area, I had to walk 10 minutes in the parking lot, again catheter, et al.  Plus Kathryn demanded I walk in the house for one hour daily for one week.

Kathryn reminded me of the Sisters of Mercy, the Irish nuns of my grade school. Jesus Christ reported to them in the 1950s.   

Yes, nurse Kathryn missed her calling.  She could have been the Ambulatory Nun!

Be well.  Joe

Thank you, Joe!

Affordable Health Care Act

Here is  a new column called "Bedside" in the New York Times --about nursing and healthcare. This first article by Theresa Brown --an oncology nurse--details how changes to The Affordable Care Act impact cancer treatment.

Take a quick look.

http://opinionator.blogs.nytimes.com/2012/06/23/money-or-your-life/?smid=pl-share

Courage Sex and Cancer

Tonight, for the first time, I feel like I really get what courage means in CancerLand.

I was part of a panel at The American Cancer Society Hope Club in Latham, New York. We were bravely and boldly discussing what sex is and can be when a partner has cancer or/and is receiving treatment—or what happens after treatment to men’s and women’s bodies.

Much of my perspective is represented on this blog—the crazy hunt for honest and frank information, my belief that sex is so important especially during cancer—that when a couple is faced with the pain and fear and just plain crap of cancer that a healthy sexual relationship is a way to keep love strong and to boldly defy thanatos—the death wish.

So I read and spoke to all of that. And then…

And then Vicki Yattaw, RN from the CR Woods Cancer Center spoke about sex and cancer. Oh my God—this was the sex talk that every woman wants to hear—with or without cancer Vickie had the info, advice, perspective and loving humor on everything from how to have sex in every possible way, during every kind of health crisis, how to boost your own libido and help a partner boost theirs, and even “BoBs”—battery operated boyfriends.

Her information blew me away. I thought I shocked the crowd by sharing my story of having to ask John’s oncologist, “Can I swallow?” (The doc didn’t know). Vickie not only knew—(wait 48 hours after chemo) but she explained how people with colostomies have sex (they do and it can be great) and how orgasms decrease nerve pain and make you look younger. Yes!

I’ll share more of her info here in the next few weeks. But I have to say now that the best speakers of the evening were the participants in the group: some couples and many singles who had or have cancer and who want a sexual life now and later. People spoke so deeply and honestly—because Vickie set the stage for all of us to use sexual words—and showed me that everyone—young or old, plain or pretty, coupled or not—want good sex lives.

And thanks to Tracy Pitcher, MSW—Director of The Hope Club and Vickie Yattaw RN—there is the start of open conversation about love—and sex!--in the time of cancer.

Nurses are Your Ally

A friend’s mother has anal cancer. They begin the process. I give her the best of my experience: the notebook, the tips on chemo, the caregiver resources, the importance of nurses, how to ask a nurse a question so she can give you a straight answer. Another friend’s mother has just had her second surgery for throat cancer. She has had her larynx removed. Bad enough but then the complications begin: emergency surgery, hyperbaric chamber, feeding, bleeding. She is so ill. The siblings all live far away so the “When do I go?” begins. I share my strategies and perspective. Again, “talk to the nurses not the doctors.” Another friend talks to me about her sister-in-law’s ovarian cancer. It’s a year after surgery, chemo, chemo again, radiation and now more chemo. She talks about the nurses.

I remember the many nurses who helped me through my brothers’ illnesses and deaths. I remember the day that a nurse waited until the doctor had left the room—he had just given me a lengthy explanation of my brother Larry’s diagnosis—Anti-Trypsin Disorder—and the nurse must have seen me trying to make sense of the info and reaching for solutions. She took me by the shoulders and held me very still and said, “Your brother is very ill.” I’m sure I said “uh-huh, the doctor was just explaining that…” and she looked at me again and said, still holding my shoulders, “Your brother is very ill.” She may have said it three times before I realized that she was saying—in the only language she was legally able to use, “Your brother is dying” . It was so helpful and gave me such clarity about what I needed to do and not do going forward. He was dead in four months but the doctor had never communicated the seriousness of his condition. The nurse did and told me what I needed to make decisions and plans.

In all of the conversations about healthcare and end of life care and long-term care I think about the nurses who see up close what families struggle with and I remember how they helped me to take better care of my brothers at the end of their lives.