Guest Blog: Rachel's Final Thoughts
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the final installment in a series of twelve guest blog posts by Rachel. You can read the full blog series here.
This is a bittersweet post as I wrap up my guest series for the Children’s Cancer Cause. It’s been an interesting journey, and I’ve learned a lot about myself. I’m in a constant state of growth as I learn to balance the personal and professional aspects of storytelling for advocacy. This opportunity has given me some excellent experience.
I’d like to emphasize some of the initiatives Children’s Cancer Cause has been behind that attracted me to the organization as a self-advocating survivor. I’ll always have to deal with frustrations related to long-term survivorship around challenges in healthcare, employment, mental health, and more. But I’m optimistic that with initiatives headed by Children’s Cancer Cause and other childhood cancer organizations, future adult survivors of pediatric cancer will have a much easier time thriving throughout their lives.
I haven’t been following Children’s Cancer Cause for long, so I’m not sure how involved they were in getting the ACA (Affordable Care Act) passed. I know they’ve posted about the fact that the ACA has had a great impact on the number of young adults with healthcare.
Editor’s Note: Children’s Cancer Cause - formerly the Children’s Cause for Cancer Advocacy - worked to ensure that the unique needs of the childhood cancer survivorship population were fully represented and integrated into the federal policy-making process during the health care debate that resulted in the Affordable Care Act. Learn more about key provisions of the Affordable Care Act that we mobilized around in this PBS NewsHour piece from 2012.
While that’s a huge step forward, we’ve got a long way to go. Obamacare came into effect around my 26th birthday. My parents had been paying out of pocket to make sure I always had health insurance. While it took an annoying amount of bureaucracy, it was fairly easy for me to switch to MediCal (CA’s Medicaid program) but I had still never been seen at a long-term survivor clinic.
As described in previous posts, I went through quite a journey to finally receive survivorship care a year ago. The bureaucracy of the American healthcare system has made things very difficult for me as I transition back from the student health insurance that helped me get there to basic MediCal.
On top of that, it’s been a headache trying to get back to the USC survivorship clinic for follow up and continuity of care. I’m still going back and forth making all kinds of customer service phone calls. That’s why I’m rooting for the STAR Act and for Children’s Cancer Cause’s survivorship initiatives to be fully supported, funded and expanded, so others don’t have to go through the same thing.
Assuming all goes well at this point, I have an appointment scheduled with my new DHS (Department of Healthcare Services) assigned primary care physician (PCP) in July and a tentative appointment with the USC survivorship doctor in August. I should be able to get my PCP to sign some paperwork that will allow me to keep that appointment. Here’s hoping.
Even in one of the states that embraced Medicaid expansion, healthcare is still a pain for survivors not seen at a well-funded research hospital as children. There are still many barriers to long-term survivorship care. Knowledge is a big component.
I have had to do most of my own research to find organizations that can help me thrive as an adult survivor. Reports posted here on the CCC blog like the GAO Report on Access to Follow-Up Care for Survivors and the New Report on Childhood Cancer and Disability feel oddly familiar due to my life experiences.
Though these posts excite me, sometimes research and reports aren’t enough. Sometimes one needs to connect with others who understand.
I got very excited when I heard about Children’s Cancer Cause’s Stewart Initiative. The biggest thing that attracted me to the Stewart Initiative was the chance to connect with other young adult survivors of pediatric cancer. I’ve met a few over the years coincidentally, but there doesn’t seem to be a central place for adult pediatric survivors (diagnosed at a young age - younger than 10 - who are young adults now struggling with long-term effects like I am) to connect.
Those I do happen to come across are often chance encounters; people I meet through support groups for individual health issues I deal with as long-term after-effects of treatment. Though My Lifeline has many active cancer-related discussion boards, the discussion board aimed specifically at adult survivors of pediatric cancer is one of the least active I’ve seen. It’s rather disappointing, considering it’s the most relevant board to me.
I’m hoping that this blog series has caught the attention of other survivors and encourages them to get involved with the Stewart Initiative and the survivor board on My Lifeline. I hope some will even contact me directly via my social media channels listed below. I realize that not everyone wants to put themselves out there. But we have this magical thing called the internet, and it would be a shame not to use it to connect with others who truly understand.
I again want to thank the Children’s Cancer Cause team for giving me this opportunity. Shout out to Steve and Jess. I’ve made some great connections in the pediatric cancer advocacy community and have begun to expand my network.
My new connections include a childhood cancer mom, breast cancer survivor, advocate and fellow social worker from Florida. She’s become one of my biggest supporters and referred me to be on a podcast.
If you liked this blog series as much as she did, I hope you’ll continue to follow me at my personal space once I get it up and running. To hear about updates on that process you can find me on Twitter (@RMMcCallum) and Instagram (@rmmccallummsw). If you or your organization have a project you’d like me to participate in I can also be found on LinkedIn.
I’m constantly looking to network within the survivorship space and would someday like to form a group by and for young adult (roughly ages 18-40) survivors of pediatric cancers. If you have any ideas or connections, please send them my way through the social media avenues mentioned above.
One more thing along those lines. I’ve started an Extra Life team called Purple Dragon (unrelated to any other organization called “purple dragon,” I just like Spyro). If you’re a gamer and you want to raise money for Children’s Miracle Network Hospitals, please consider joining my team! The site identified my local CMN Hospital as CHLA. I’m not sure if all funds for my team would go to CHLA or each individual’s local children’s hospital. Either way, it’ll be a fun time for a good cause.
Thanks for reading!