Guest Blog: My Day-to-Day Life as a Survivor
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 fourth in a series of guest blog posts by Rachel. Catch up on her earlier posts:
Meet Rachel McCallum / My Search for Adult Survivorship Care / Receiving Survivorship Care During a Global Pandemic
If you’re interested in guest blogging, please reach out to us at info@childrenscause.org.
“The complex issues that arise from being somewhat disabled in a world of rigid definitions and societal norms is experienced in every aspect of life, from employment to social relationships.”
As promised in previous posts, this entry will detail the late effects from my tumor and treatment that I still deal with in my day-to-day life nearly three decades after initial diagnosis. It’s presumed I’ll be dealing with these the rest of my life.
But you never know - science and technology are always advancing. The ever-present issue appears to be distributing the benefits of those advancements to the people most in need. At any rate, my status as a white Californian from a middle-class family gives me an advantage many childhood cancer survivors do not have.
Cancer - at any age - affects people of all races, religions, gender identities and socioeconomic statuses. My late effects are annoying but manageable. They do qualify me as a person with disabilities - as defined by the Americans with Disabilities Act (ADA) - though I do not qualify for traditional federal disability benefits.
My late effects do not interfere nearly as substantially as the late effects some cancer survivors – especially brain tumor survivors – experience. Although I have a partial facial paralysis, which causes my left eye not to close properly (and therefore terrible dry eye syndrome), my facial paralysis is not nearly as severe as some pediatric brain tumor survivors I have met over the years. It’s one of those things I’m heavily self-conscious about but feel like I have no right to be because others have it worse than me. I have known a few young brain tumor survivors who have been rendered blind by various complications of their tumors and treatment. Others are permanently in a wheelchair or use a cane or walker to get around. I have some balance issues but am fully capable of using public transit independently and traveling on foot for a mile or more.
I am grateful to be able to live a relatively independent life. Compared to the independence level of the average thirty-something American, I often feel left behind. However, compared to the average pediatric brain tumor survivor I am blessed with an independence level most did not expect based on my childhood diagnosis.
Based on neurocognitive tests, I am average or above average in most areas. Not many pediatric brain tumor survivors make it through college - much less grad school. I do know one other pediatric brain tumor survivor who also recently received her MSW (master’s in social work), but neither of us have established careers. We both work primarily part-time and/or as volunteers for non-profit organizations. It is well documented that childhood cancer survivors are at higher risk for under- or unemployment than their peers.
It is often difficult for employers to understand and accommodate the complex issues we deal with. We may be fully skilled and capable of performing a job but need slight accommodations that aren’t attached to an HR-approved diagnosis. These are simple things like needing more time to accomplish tasks or a more flexible schedule. The complex cognitive issues brain tumor survivors face are far beyond the average employer’s understanding. After an excellent interview, we may simply be dismissed as having “something off” about us and therefore be overlooked in favor of a candidate who is “a better fit” (an HR-approved way of saying “not as complicated”).
In addition to employment woes, there are many physical and mental complications we have to deal with on a daily basis. For me personally at this point in my life, the physical complications mostly consist of hearing loss and dry eye, each of which come with their own set of frustrations.
I often find that helpful information is passed by word-of-mouth in chance meetings on Facebook groups or other online forums. The internet is truly a blessing for researching and finding support, but the internet is vast and can be overwhelming. Even in 2021, not everyone has access to the internet and the time to sit down and do research. Patients with serious medical issues - not just cancer survivors - would be able to find these resources much more easily if medical professionals who deal with these specific issues were more connected and informed and had time to share these resources with their patients.
As it is, most of us have to do our own research online. One of the reasons I got into social work is because I love sharing resources. It is a glorious thing when one finds the perfect group of people dealing with similar issues who might be able to share handy tips and tricks. I am thankful that there have been a few of these groups in my life. As a person who was late-deafened at a fairly young age, I highly recommend that those with hearing loss get in touch with a local Hearing Loss Association of America chapter. As a person with extreme dry eye, I suggest those experiencing similar symptoms get in contact with the Dry Eye Foundation. I will share more on how these and other organizations have shaped my identity and overall survivorship journey in a later post.
At present, I’d like to talk about how the complications of having various diseases and symptoms at once have affected my participation in some support groups. As much as I love organizations that are geared towards helping people, it is foolish to think that one organization can ever fulfill each individual member’s every need.
Counselors from OCF's World's Greatest Camp in June 2017. Rachel is pictured in the middle with sunglasses and a hot pink headband.
Here’s an example using my own late effects and an organization that is important to me:
The Orange County Foundation for Oncology Children and Families (OCF-OCF) provides support for local pediatric cancer families and free social events for families, culminating in annual camps in June and September. Their main focus is to give pediatric cancer patients a chance to just be kids and family members to get to know others in similar situations. I’ve made many life-long friends at OCF and it will always be near and dear to my heart. Many former campers – patients and siblings alike - feel the same way and become counselors once they are too old to remain campers.
Although I adore the people and the camp, there are two late effects of my tumor and its treatment that have always made it difficult to fully enjoy camp – both as a camper and counselor.
Since my initial diagnosis and surgery, the nerve that allows my left eyelid to close has been damaged in such a way that it prevents the lid from closing properly, resulting in extreme dry eye. Back in the pre-COVID days, camp was held in the Big Bear Mountains. The high altitude and dry California weather aren’t just a recipe for wildfires - which is why we always held campfire in a large cement arena - they’re also a perfect storm for dry eye symptoms to flare up. God forbid any of those dreaded Santa Ana winds I mentioned in a previous post rear their ugly head. I’ve been searching my entire life for relief from the agonizing eye pain I deal with under those conditions.
There are always professional nurses available, as many campers are medically fragile. However, I guess it never really occurred to me as a camper to ask the nurses if they had any solutions for my eye pain. I was busy doing activities with my cabinmates and it wasn’t a bad enough situation to warrant alerting my counselors and taking a detour to the nurses’ cabin. I haven’t even been able to see if my scleral lens brings me any relief at camp because I received it during the pandemic, which rendered in-person camp impossible.
Another reason camp has been difficult for me is my severe-to-profound hearing loss. Though I was monitored throughout treatment for possible hearing loss, I didn’t show signs at the time. I was a smart kid and coped rather well. It’s assumed that I was losing my hearing throughout elementary school but was clever and adaptable enough that it didn’t come up until they held a routine hearing screening at school when I was in the sixth grade.
There are some campfire songs I’m still not 100% sure I know the correct lyrics to. When I was a camper, I didn’t think too much about it. Campfire was always fun and energetic, regardless of whether I had the words right. I couldn’t understand what was being said when kids would shout at each other inside the cabin to someone outside or vice versa.
I still have these issues and they seem like a bigger deal now that I’m a counselor, so I often don’t even volunteer. On the few occasions I have volunteered as a counselor, I’ve felt left out. My hearing loss is progressive and was presumably caused by the radiation treatment I received as a kid. The two training meetings counselors are required to attend before each camp session are typically held in small, crowded portable classrooms. With lots of people meeting in an enclosed space, things can get hectic. There is often some sort of ice breaker game being played in the first meeting. Hearing instructions is nearly impossible as the game is explained over numerous side conversations. Once the game begins, I typically don’t know what’s going on unless it’s something I’ve played before.
During the second meeting we break into our assigned cabin groups and start to plan for the camp weekend. Once again, the cacophony of various small groups talking at once in an enclosed space makes it nearly impossible to have a comprehensible conversation. At some point, the camp coordinator will go over the campfire schedule, and staff members choose what songs or skits they’d like to lead or participate in. Often I have a difficult time keeping up with this process and end up without a role in the campfire until the last minute. Whatever I do end up doing at campfire ends up being a frenzied mess.
Campfire is all fun and games, but what really concerns me as a counselor is not being able to be of much help in an emergency. I take my hearing aid out to go to sleep, so I’m not much help if anything goes bump in the night. In addition - though I’m not quite sure if this is a cognitive issue related to the tumor - I’ve always had a hard time with maps and directions. I must have been to the camp at least 30 times since 1993, but I always find myself following others to activities as if I’m not sure where I’m going.
Overall, camp is a fairly laidback place to be in a state of relative confusion. But it’s hardly the only example I have of situations in my daily life that are complicated by my survivorship status. It’s simply the one I chose to use for this particular post.
In reality, the complex issues that arise from being somewhat disabled in a world of rigid definitions and societal norms is experienced in every aspect of life, from employment to social relationships. Please stay tuned for my next post in which I’ll be discussing the ways in which my survivorship status has led me to question my personal identity.