Candy stripers or strippers named Candy? What do YOU think an AYA cancer program has to have?Heidi Adams — By Heidi Adams on June 9, 2009 at 7:28 am
I need your help, guys!
Yesterday I attended an all-day meeting sponsored by the LIVESTRONG Young Adult Alliance, whose purpose was to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. It was a great group that included patient advocates, nurses, social workers, oncologists from community and academic centers, as well as LAF and NCI staff.
The question posed at the beginning of the meeting was this: “What components does your institution’s program need in order to truly meet the needs of young adult cancer patients?“
We tried to stay focused on the places young adults’ needs differ from older or younger patients. Areas like: fertility preservation, no medical “home,” lack of clinical trial access, lack of insurance, need for childcare, no peer support mechanisms, need to stay in school or at work, nomadic tendencies, unfamiliarity with medical and insurance systems, need to maintain independence, shock of facing mortality for the first time…the list goes on and on.
So, for example, an AYA Center would have a dedicated space for young adult patients and internet access. It would have staff trained in the unique psychosocial needs and clinical care of young adult patients. Access to fertility preservation, genetic testing and counseling, financial and legal resources. Childcare assistance. Referrals to appropriate clinical trials. And so on…
Now I want to ask YOU: WHAT DO YOU THINK AN AYA PROGRAM ABSOLUTELY HAS TO HAVE TO REALLY MEET THE NEEDS OF YOUNG ADULT PATIENTS? Bring it on–from the smallest detail to the biggest concept, give me your wish list for an AYA program so we can make it happen!
Just to get the creative juices flowing, I will remind you here that Michael Diaz has already–quite selflessly–taken on this huge task himself, in developing the Michael Diaz Cancer Center for Young Adults. Here are his initial recommendations:
Loosely based on Michael’s “Cancerland” blog, with contributions from JT, Kristin, Steve51 and Andriu
10. No candy stripers — just strippers named Candy.
9. Radiation laser tag.
8. You can try your luck at a basketball shooting game, only the rim would be about a foot away, because let’s face it, none of us have the strength to shoot a basketball a normal distance.
7. And we’d win cool prizes, like, like… insurance coverage for another year. Keep the fucking stuffed animal — give me something I could REALLY use.
6. One of those mist things that would spray the med of your choice. (Imagine that. Now imagine that spraying Dilaudid. HELLZ yeah.)
5. All nurses’ stations will double as full-service bars. Push your nurse call button and order whatever the hell you want.
4. Vincristine [or INSERT CHEMO NAME HERE] would be called “motherfucker” … “Hey, I don’t want any more of that motherfucker.”
3. When you’re prepping for surgery, you don’t need to use any anesthesia. You just have sex until you pass out.
2. Everything will be a game. You know, if you need to vomit, we’ll bring in people you hate so you can vomit ON them. Or we can line up the vomiters and see whose vomit is more toxic.
1. And how about a section where they give out nice, sensual massages to anyone who wants one. AND YOU GET A HAPPY ENDING! (wink wink)
Because don’t we all want happy endings? Isn’t that what we’re striving for?
It’s nice to dream.