In Conversation With... Duval Jefferson

Cancer doesn't discriminate, but healthcare systems often do. Black people in the UK are less likely to be diagnosed with cancer early, face longer wait times for treatment, and therefore experience worse outcomes across multiple cancer types. 

These disparities are particularly stark in blood cancers like lymphoma. Studies indicate that Black patients with Hodgkin's lymphoma are diagnosed at later stages and have lower survival rates compared to their white counterparts. This is not because of biological differences, but due to systemic barriers in healthcare access, implicit bias, and a lack of cultural competency among medical professionals. The "watch and wait" approach - often applied too liberally - can be especially detrimental when symptoms are not taken seriously from the outset.

For Duval Jefferson,  professional actor, dancer, and content creator, what should have been a straightforward medical investigation turned into an 18-month ordeal. His experience illuminates the very real consequences when healthcare providers fail to listen. 

In conversation with The Science Gap, Duval shares his journey from noticing unexplained swelling to being diagnosed with stage 3 Nodular Lymphocyte Predominant Hodgkin's Lymphoma. Duval chose to transform his frustration into a mission. He advocates for himself, raises awareness, and creates the representation that so many Black people desperately need in conversations about health. 

What symptoms or changes in your body first led you to seek medical advice? 

In April 2024, I noticed an odd swelling in the left side of my jaw. Being a professional actor and dancer, it’s imperative that I do my best to stay healthy. I know the lymph nodes fight infection, but mine were raised for a substantial period of time. After hours of hold music and a GP visit, I was initially prescribed antibiotics with no follow-up. 

The swelling in my face started to affect my everyday - especially being someone who identifies as confident, and often posts my face online. Whilst I’m aware our body goes through changes, it’s important that we don’t become complacent with abnormalities just because we’re not getting treatment in time. 

I was having night sweats, extreme tiredness, hives and coughing blood after brushing my teeth - all things that can be normalised in the life of someone who tries to keep fit. Even weight loss, which is something that I intended to make work for me!  But these symptoms persisted, I kept convincing myself it was tonsil stones, or it was a detergent causing me the hives, or that it was something in my diet. Especially since the hospital failed to give me any record of a follow-up and an unsuccessful X-ray.

After a year and a half of chasing, I was finally admitted to have two emergency blood and iron (ferritin) infusions. It was a scary time having my GP call me at 10 am, stating that it would be faster for me to request it directly from A&E than the urgent cancer possibility pathway. 

I remained positive and knew from there that I really had to take my healthcare into my own hands. 

During my second infusion of iron, I pulled a doctor to the side and reminded them of my ‘year and a half journey’ with the growth on the side of my neck. She asked what they tested for, and after I told her, she looked immediately concerned. They didn’t test for everything. Also, with possible cancerous growths, doctors encourage a ‘watch and wait’ if they regard the growth as non-harmful. The doctor was bewildered since my situation was more than harmful, so she scheduled me for an appointment to get the correct biopsy. I was called in the same department where I got my antibiotics for my new test results.

That’s when the doctor I saw a year and a half ago broke the news. He apologised. He stated that I investigated the growth on five separate occasions with no follow-up from the NHS. On that day, I was diagnosed with Nodular Lymphocyte Predominant Hodgkin’s Lymphoma - a rare form of blood cancer. 

Rather than voice my disdain, I immediately informed my workplace and my family to adapt to this news and open myself up to support. Ego and pride were not an option. Then, I saw it as an opportunity to raise awareness on the issues of healthcare in the UK, the importance of being proactive in your own healthcare, and to show people that I can still wake up every day and actively choose a solution even with the cards life had dealt me. 

Cancer is different for everyone, but having people see someone who is gay, black, and male fight this with a smile, I knew, would be so inspiring.

Even though the doctor presumed my Hodgkin’s was stage 1, the PET scan weeks later revealed it was stage 3. Still, I chose to show up for myself every day, vlog, and raise awareness. 

What was your experience like navigating cancer care, and did you ever feel you had to advocate more strongly for yourself as a Black man?‍

Navigating cancer care is time-consuming and very revealing. I use the term ‘revealing’ because in the space of a month you have to consider things we take for granted like: the hair we have on our heads and bodies, our ability to work and earn money, our ability to socialise, our ability to be active, and our ability to put our care in the hands of someone else, and knowing it’s going to be bad before it becomes good.

As a black male with a Caribbean heritage, I’m rooted strongly in holistic methods of healing as well as healthcare. The statistics show the mistreatment of minorities in hospitals, and I think it comes from a lack of research. Also, not enough black people give blood, and not enough black people are coming online and being open about their health problems. I decided to be the black male who did it, and did it with love. 

Men, especially many of the straight black males in my life, don’t even talk about their feelings or hold the capacity to tell another man they’re not feeling good. Every day, I choose to create a safe space to subvert that. I’ve had numerous direct messages of advice, stories, anecdotes, and messages of inspiration. People getting themselves checked for the first time, people giving blood, people feeling inspired, and I’m just one life! But one life means a lot to many. 

Even though I’m a black man, my journeys are not my own. I’m someone’s brother, someone’s son, someone’s uncle, someone’s reason to laugh on the Instagram timeline, someone’s dance partner, someone’s work colleague. I’m unafraid to love because having the ability to love is what saved me from solitude. 

Cancer isn’t monolithic. The strength in me sharing my story comes from a sense of duty. I know I don’t “have” to do this, but it will empower someone and therefore empower me. Transparency saved me from taboos around race, sexuality and finance, so why can’t it save me from healthcare?

What do you think needs to change to improve early diagnosis and care for the Black community?

To improve earlier diagnosis, transparency in healthcare needs to be practised more. Now, hospitals have introduced apps where I can easily check my blood test results with information on everything from my white blood cell count to the variation of different sizes of blood cells.

I propose that with the development of accessible health results, people should be given a way to identify each variable of the tests and what we can specifically do to adapt and improve our health. For example, looking at your iron results and receiving a prompt that tells you how to improve your iron intake. 

I also think healthcare centres need to be more thorough throughout the patient journey. When it comes to lymphatic testing and possibilities for cancer, all tests should be completed. The ‘watch and wait’ method ends up being more costly in the long run. It will also help foster great relationships between patients and doctors. In turn, boosting doctors’ morale as they feel like they’re actually helping their patients!

Donate to Duval GoFundMe! https://www.gofundme.com/f/support-through-my-cancer-journey