Everything Changes - The Guide to Young Adult Cancer

By Kairol Rosenthal

During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups.  They ranged from excellent to abysmal.  Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:

1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.

2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up.  Give it more than one shot.

3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself.  Many support group participants are often waiting for that one person to talk about the elephant in the room.

4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with.  It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.

5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group.  If one format of support group isn’t right for you, find one that is.

6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group.  I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease.  I’m okay with that.

Have you ever attended a support group?  What made it either good or not so hot? Got any ‘support group success tips’ to add to the list?

Check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, it’s like a portable, paperback support group.

Everything Changes is throwing a 1-year-old birthday party for the Affordable Care Act. Don’t be embarrassed if you don’t know what’s in the bill - you’re not alone. Our big, broken health care system needed a fabulous new makeover; the changes are welcome, yet complex.

I’ve made a cliff notes version of the main parts of the bill that are already in effect and impact our freedom to access care. Please read, check back, and share the info with your friends and families so we can all better understand and celebrate our new healthcare freedoms and rights.

 FREEDOM TO ACCESS CARE!

Caps
No more caps. Insurers can’t set dollar limits on your lifetime benefits coverage, no exceptions. Annual benefits caps have been raised to $750,000 and will also be fully eliminated in 2014. Big Darn Deal = Cancer patients don’t have to worry about rationing their care for fear of being cut off.

Kiddos
Insurers are required to provide coverage to kids with pre-existing conditions. Applies to kids 19 and under. Big Darn Deal = Have you ever paid out of pocket for asthma treatment? Enough said.

Young’ins
Young adults can be covered under parental insurance plans until age 26, including married young adults, students, and non-students. Big Darn Deal = Most young adults are not slackers, we just can’t afford insurance while job searching and working entry level jobs with few benefits.

U-Turns
Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to make a big u-turn and deny you coverage. This u-turn is called a rescission and they can’t do it anymore. Big Darn Deal = Your mom is diagnosed with breast cancer and her insurance company can’t deny her coverage because she forgot to mention an ingrown toenail on her insurance application in 1999.

Pleas Please
You’ll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. Big Darn Deal = Insurance companies have to be accountable to someone besides themselves.

X-Change
What the hell are insurance exchanges? Think of exchanges as insurance shopping malls especially designed for individuals and small business that have a hard time finding insurance. The government is building the mall and will only let stores set up shop if they agree to treat individuals and small business shoppers fairly. Big Darn Deal = Insurance companies can’t rob blind a huge part of America’s workforce – individuals and small businesses.  Instead they’ll compete for our business with plans that are more affordable, and easier to understand and compare.

Do any of these changes impact you as a cancer patient or loved one?  How so? Share your thoughts and comments below.

Check back again for ongoing conversation about access to health insurance at everythingchangesbook.com.

It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.