I’ve searched the far corners of the young adult cancer world. If pressed to crown a queen, I’d place the tiara firmly on Heidi Adam’s head. She’s the founding director of Planet Cancer. When Heidi speaks, people should listen. So listen up to what she wrote today:
“Yesterday I attended a meeting sponsored by the LIVESTRONG Young Adult Alliance to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. 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!”
Thank you Heidi. My motto as of late is “quit bitching and start thinking.” Think about where you have been left high and dry by the cancer community or your medical institutions. Translate them into truly useful suggestions for Heidi and leave a comment below.
What changes need to happen? Where did you want support but did not find it (childcare, financial, health insurance navigation, access to clinical trials, a place to study or work at the hospital, info about fertility and sex)? How could your cancer experience have been made easier? What programs have you participated in or services have you received that were fantastic and you think should be replicated?
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June 9th, 2009 at 7:56 PM
Off the top of my head? Help with raising kids while battling cancer would be nice. Just being around other young adult cancer patients. Being able to talk with a doctor who doesn’t think you’re a freak because you’re a not 50+ years old. Having a doctor who understands that their patients are going to have questions about sex, intimacy, etc. Knowing that you aren’t the only one going through this. Having a place that refers you to an organization that doesn’t only cater to the 50+ crowd. I am going to have to think about this more and get back to you with specifics. While I understand the need to talk about fertility, etc., I think that there’s a lack of conversation about raising young kids while battling cancer. There’s a definite need for not only the patients, but the kids and the spouses, as well. Something to address that would be nice. Hoo boy - you guys have opened a can of worms. I LOVE it. I am going to post a link to this on my blog - see what I can come up with for you.
June 13th, 2009 at 11:49 PM
I don’t know if many young people are in my situation, but one of the major difficulties I’ve experienced is needing a lot of resources, but not qualifying for many things due to the fact I’m too young. The system expects young adults to rely on their parents or spouses, but what happens when you don’t have a husband, strong family support, or friends that are local? If youre too sick to drive or do alot of household things, that leaves you needing transportation to all drs/tests, help with getting groceries, Rxs, doing laundry, cleaning, etc. Financially, you’re typically not at a point to pay high prices for these services, so you kind of get stuck. I searched like crazy for resources but didn’t come up with much. (Though as an FYI, I did qualify for cleaning for a reason- 1mo free house cleanings, for 4 mo, I’d recommend it, it’s only for women though)
Related to the resource issue up above, it’d be nice if treament centers already did the leg work for you and had a small concise pamphlet that listed resources particular to young adults by category(disabilty, insurance, food, transportation, cosmetic, etc) that contained not just the national things, but any local resources in the area. Even if it’s something like listing the local hair salon that gives free wigs, or the local laundry place or grocery store that delivers. The local resources have been some of the most helpful/essential to me.
The last major issue I’d love to be addressed is the dismissiveness of the doctors/health care team towards young adults and women. And this might be something patients of all ages experience, but I’ll still mention it.
Time spent with patients is extremely short, they don’t like you asking any questions, and they are very dismissive in regards to symptoms/reactions to treatment. I was often told how weird I’m reacting to treatment, that my body is very sensitive, and that I’m young and should be feeling fine. And so instead of addressing the issue, they just ignored it. Similarly the nurses would ignore me when i informed them of reactions starting during chemo, saying most people don’t have that, etc.. until it was too late and I had vein flares up my arm or rashes over my whole torso,etc. It was always me noticing problems or raising questions, being ignored, and then being right in the end. It wasn’t until I put 2 pages of their mistakes in writing, that I got them to listen to me for longer than 5 minutes.
I was told by one nurse, “oh youre 30, I thought you were 23 this whole time”. After that his attitude was different and he seemed to take me more seriously. So although I don’t know if age is the only factor in the dismissiveness issue, I think it plays a part, and definitely more so for women.
August 11th, 2009 at 6:11 PM
Nice piece! We are thrilled that Heidi is joining us at Vanderbilt-Ingram Cancer Center in Nashville on Sept. 12 for Survive and Thrive for Young Adult Cancer Survivors. Reception the night before at Gilda’s Club Nashville. Might even take a group out for some authentic Nashville honky-tonking. We’d love to have you join us! More info: http://www.vicc.org/2009/thriveya