October is Cancer Awareness Month – Pass it On!

October 17, 2010 at 8:17 PM (Awareness, Help, Karma, Research) (, , , , , , , )

Awesome Ann from “Breast Cancer? But Doctor…I hate pink!” has a new campaign – check out her amazingly generous idea, and spread the word…

Wouldn’t it be fantastic to have teal and pink ribbons twined together next October? Or rainbows? The internet is a powerful place.

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Help Me Help You

July 23, 2010 at 3:57 PM (Family, friends, Help, Karma, Treatment) (, , , , , , , , , )

Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.

In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.

Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.

  1. Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
  2. Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
  3. Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
  4. Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
  5. Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.

While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:

  • American Cancer Society (www.cancer.org). There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
  • American Association of Marriage and Family Therapists (www.aamft.org). Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
  • Ovarian Cancer National Alliance (OCNA) has a great online support community (http://www.inspire.com/groups/ovarian-cancer-national-alliance/). For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
  • And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
  • Gilda’s Club (www.gildasclub.org) has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.

My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.

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Throwing It All Away

March 23, 2010 at 4:52 PM (Karma, WTF) (, , , , , , )

Call me crazy, but having come this far, I’m not really eager to just bite it in some offhand way. Thus it makes me really hot under the collar to see other citizens making stupid decisions, especially if those decisions include me.

Yesterday on the way home from (surprise!) Trader Joe’s, Avery and I were merrily chatting and generally enjoying each other’s company on the local Major Shopping Route. Our usual way home, down an off-ramp and through a traffic light towards our side of town, looked crowded (I’m a little touchy about sitting at a light if I don’t have to), so I chose the alternate route under the intersection and on to the next side street. As I continued down the right lane of the four-lane, divided highway past the beginning of the exit ramp, at a reasonable speed, a young lady in a small sedan PASSED me on the left, then BRAKED, merged in FRONT of me and off the right onto the exit ramp, BRAKING to get behind the car (exiting) that had been less than a half-car-length in front of me. By standing my car on its front bumper, I was able to skillfully avoid pasting her with my Viniman.

It probably goes without saying that I used my horn. Continuously. Until I looked over at her incredulous expression (“WhAAAAAt?”) and the TEXTING DEVICE clutched in her left hand as she drove up the ramp.

I’m probably not the most understanding person in this situation, being one who uses my cell phone for making calls, and then only eight or ten times a week at most. I don’t text and don’t really understand the reason for texting (which may explain why it’s so hard to get babysitters to get back to me), and I CERTAINLY don’t understand why it’s so important to finish a text while operating a one-ton lethal weapon at highway speeds.

I can’t decide if this is the cancer talking (maybe), or if I’m just getting old (probably). But it annoys me a lot (more than it should, no doubt) to be fighting tooth and nail to survive another six months, a year, a decade, and see people with their whole lives ahead of them making stupid decisions that could end it all in a blink. Texting while driving. Smoking. Buying shopping carts full of lousy food. I want to approach the young man cowering in front of the rain-soaked office building cupping his Camel and whisper, “Psssst…Cancer sucks,” in his ear. I want them to understand that it’s not always going to be this easy to assume you’ll live forever.

And while we’re on pipe dreams, I’d really like an iPhone.

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More Cancer Karma

February 1, 2010 at 7:52 PM (Karma) (, , , , , , , , )

Once I had this blog up and running, I spent some time fleshing out the peripherals and racking up a pretty sweet blogroll. There are quite a few sassy cancer babes out there and some of them are terrific writers, too. It’s startling/depressing/comforting to discover that one or two of them seem to be living lives that are parallel to my own: young kids, solid marriage, suburban poster children, fighting like hell, still putting on makeup. Naming their wigs.

I don’t want to seem like I’m shamelessly trolling for readership, but the reason I started blogging in the first place (aside from a little ego-stroking) was to link up fierce cancer babes all over and build some support, outside of the established cancer communities, for keeping sane and surviving with your personality and sense of humor in tact. So I started dropping some comments on the blogs that really hit home – experiences I could relate to, really poignantly aching displays of honesty, hysterical tales of mishaps and chemo-induced forgetfulness. And one of the babes who read my comments and wrote back was My Name Is Not Cancer Girl, who’s knocking BC on its butt in the ATL while taking care of her family. And naming her wig. Now we read each other’s blogs and offer support and wiseacre commentary, just like I had hoped.

Last weekend I got an email from an old school friend (thank you, facebook) who wanted to introduce to me a dear friend of hers who’s fighting cancer, with a new bone metastasis, in Atlanta. I wrote back to say that I’m always happy (well, you know what I mean) to meet a new cancer chick and share tips, gripes, horror stories, etc. As I was writing the body of the email, I had a little tickle in the back of my brain… “Is there any chance she blogs? I asked. Bet you can’t guess the answer.

Karma? Coincidence? What do you think?

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My Kilt Encounter – An Update

January 4, 2010 at 1:39 PM (Hair, Karma) (, , , , , , , , )

I was checking my stats and noticed that several hits from the past few days have come from “xmarksthescot.com”. An unfamiliar URL. I traveled there to discover that it’s a community of kilt-wearing scotsmen. I guessed they were amused by the tale of my Trader Joe’s encounter of last month, and discovered that someone had put a link to my story in a comment thread. When I navigated back to the original comment, look what I found!

http://www.xmarksthescot.com/forum/good_feeling-t55992/index.html

The universe works in mysterious ways.

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