Morgan McNeely is a 24-year-old Albertan living with cancer. In her free time, she volunteers with the Alberta Health Services as an Adolescent or Young Adult’s (AYA) Patient Advisor through which she provides input from her experiences to improve the overall care for young adults facing cancer. She shares her story today.
In Her Own Words:
“I was twenty-four years old when I was diagnosed with stage IV colon cancer. I was told I needed to start treatment immediately, which would not cure me, but extend my life for one to two years. So far I have completed twenty-nine rounds of chemo, a partial colon resection, and a month of radiation. I have two partially calcified tumors hanging out near my spine, and as long as they stay chill, I can stay off treatment. I am followed closely with CT scans every three months and biomarkers. Four and a half years later, I’m still here and living my life! Being an outlier is pretty great.
“I was in the middle of finishing my degree and working full time when I was diagnosed. I had dreams of becoming a researcher and professor. Naturally, that all fell apart with my diagnosis. Much of what I had thought was integral to my identity fell apart around me, and I had an identity crisis. I didn’t know who I was without a job, without research. Friends I had for years walked away, and I was suddenly without peers that understood what my life was like. My social life became non-existent. I had death looming over me before I had felt I’d ever -really- lived. I was also a broke student, I couldn’t work, but rent still had to be paid. I didn’t have any benefits or health insurance but prescriptions still needed to be paid for, even with a program helping cover some of the cost. I had no idea what to do next, and there was no one to ask. I didn’t see anyone like me in the chemo room or the hallways. The stack of pamphlets I was handed would offer support on how to tell grandkids you had cancer – and nothing on how to talk to my parents or sister or friends about cancer. My fertility was a second thought in the face of cancer, and I became menopausal quickly at 24 years old.
“Sometimes it’s felt that being young has given society the power to second guess me every single time I needed to interact about cancer. I have had people give me dirty looks for using accessible seating, parking, for being on AISH, and don’t even get me started on the awkwardness people feel when they find out I am unemployed and riddled with tumors. “But you’re so young” — yes, yes I am. “You look great though” — thanks, but it feels like I ate glass for breakfast and I’m headed to my ninth appointment this month. “Wow that must be tough” — you bet it is. I’ve had fourteen friends die in the last four years from the same thing hanging out in my body, waiting to strike. Despite of all of those problems, I wake up every morning, have a coffee, pet my cat, and smile anyway. Once you realize you’re still you when everything is taken away, you know your full worth, and I am worthy of the happiness I feel every single day. There are really hard days, but I found my people again and I’m surrounded by love, support and kindness because of cancer.
“When I was first diagnosed, the AYA Patient Navigator program didn’t exist. All of the supports I found were on my own steam. I had to comb the internet because I knew I couldn’t be the only young person with cancer, and thankfully I found ways to connect with people who understood exactly what I was going through. The amount of sharing that happens in a community like the AYA cancer community is incredible, and my cancer posse helped me find the resources and programming I was desperate to find.” says Morgan.
Jodie Jespersen was the program’s first official AYA patient navigator. (She’s since taken a role with the Stollery Children’s Hospital Foundation.)
“Shortly after Jodie began her role as an AYA Patient Navigator at Cross Cancer Institute, she tracked me down in a chemo room and just wanted to chat. When she asked if there were any resources that I’ve found helpful, I unloaded my list, and from then on I knew how important it was to share the helpful resources, experiences, and pitfalls of AYA cancer. Jodie was so willing to listen and ask questions and was also just a ray of sun in an otherwise foggy place. Knowing there was a person dedicated to the care of a community as special and with as complex as the AYA cancer community was not only a massively uplifting thing to know, but it was powerful. Suddenly there was a person to turn to with the weird questions, someone to listen to the concerns the community has, and someone to advocate for us with a voice louder than our own that knew where to direct the loudspeaker. Jodie also looked for ways to have AYA patients as a crucial part of her work and involved us as frequently as possible.
“Jodie’s involvement with us AYA patients is really what bolstered me into becoming an AYA patient advisor. I knew my experiences and needs were valid, shared by many members of our community, and that I had something to add to the conversation. Jodie had already proven to me that it mattered to speak up, and where better to do it than during the conversations that form the future for AYA cancer care? It’s important to me that AYA patients get the support, representation and programming they need to bridge the gaps that exist in the current health care world because the gaps are huge. Knowing that I’m helping bridge those gaps is so meaningful to me and the thousands of young adults with cancer I represent at meetings. My voice is their voice, too.
“Empowering young adults dealing with cancer is so important to their care. No one is too young to get cancer, cancer doesn’t discriminate. In the latest study by researchers at Memorial University, in partnership with Young Adult Cancer Canada, only one in the twenty-two young adults will find Young Adult Cancer Canada, the only national foundation dedicated to helping AYA cancer patients. The amount of funding and research committed towards AYA cancer care is incredibly small in comparison to other age groups such as pediatric care. We have special and very different needs in comparison to pediatric and geriatric care, and few resources to remedy the problems we face. I hope that awareness will reach not only the people who will meet and decide the future of AYA cancer care but also the many AYA patients that deserve to be connected, heard and helped.”
Each year in Alberta, nearly 300 new cases of cancer are diagnosed in adolescents and young adults, aged 15-29. Falling between the dividing line of pediatrics and adults, this group of patients faces unique challenges. Unfortunately, the needs of AYA patients are often unmet. Not only can patients feel isolated, but without the proper supportive resources who truly understand their needs, they have nowhere to turn.
Today, thanks to the support of Alberta Cancer Foundation donors, young cancer patients can receive support through the AYA Patient Navigator program. AYA patient navigators are specially trained registered nurses who work with a multidisciplinary team of healthcare professionals to empower young adults with cancer. The program specializes in supporting this group as they navigate their cancer journey both inside and outside the health-care system and works to enhance patient care by ensuring their distinctive needs are supported from diagnosis to survivorship or in some cases palliative care.
Click here to connect with an AYA Patient Navigator please visit.