James' story

James Laiolo, 22 (pictured below, left), is a third-year medical student at Exeter University. He tells us about being diagnosed with Burkitt lymphoma, aged 21, and how he is using social media to empower other young people with healthcare.

Back in November [2023], I noticed a lump under my armpit. I live with other medical students and asked them to look at it for me, but no one was really concerned. I had a GP appointment booked at home towards mid-December, so I decided not to really follow it up until then. However, the lump stayed, grew a bit and felt solid. It didn't feel good. I went to the GP appointment, and it was agreed I should get an ultrasound, which showed I had numerous lymph nodes enlarged in my armpit and neck.

I was booked in for a biopsy a few days later and then after about another week, I was told I had lymphoma. They couldn't tell me anything specific about it and referred me to The Royal Marsden, where I got to know the specifics of what type of cancer I had.

Since my diagnosis, everything’s been put on pause for me. Everything's been delayed a year.

A lot of the work I've done this year at university won't count. I was halfway through my third year, but I'm going to have to start from the beginning of third year when I go back.

My treatment plan consists of four rounds of chemotherapy, due to finish this month (April 2024). From there, it will be just about recovering and getting back to normality, fitness and health. The hope is that this will be just a chapter of my life I can close, though I'll have follow-up appointments every three months, for two years.

Using social media to empower myself and others

I wanted to document my treatment on TikTok for myself. Once I'm out the other end of this, I can look back and see what I’ve been through and process it. I also felt that as I was in a unique position as a young cancer patient studying medicine, I could be a help to other young people.

Being in the hospital with a little bit of medical knowledge has been helpful to understand what's going on around me, and hopefully that’s something I can pass on to others. There's also a lot of things which I’d say you're not aware you can take control of in your care. Unless you've been in hospital before, it's a very different type of place than anywhere else.

I'm quite an open person, so I can answer questions or share a bit of my experience and put people who might be getting a new cancer diagnosis a little more at ease. By sharing my story so openly, I’m hoping it can empower other young people to reach out for support or help them make sense of a really difficult time.

I get lots of messages from people who’ve been diagnosed, or their friends and family. They'll talk about their experience with me, and that's been so helpful - not only for them, but for me, too. It's almost like a forum, a place for people to connect, which is cool.

There's someone with the exact same type of cancer as me, in remission, who’s documented his whole journey on his own TikTok. The early rounds of chemo destroyed me a little bit physically, so I reached out and asked him, ‘when do you start feeling normal again?’. He wrote back with tonnes of messages, which was a great support. A doctor or nurse, they won't be able to provide that perspective. They can give a timeline of what they've seen with other patients, but they can't give the unique, first-hand experience of someone who’s been there themselves.

What should young people do if they’re worried about their health?

If there’s anything you're not sure about, you must see your primary doctor. You can always do your own research and look online but usually that’s going to end in a whirlwind of ifs, buts and maybes. Just go to see your GP, get it checked out. You’ll lose nothing from doing it, but you can lose much more by not.

My message to other young people with cancer

You can get through it. Even if you don't think so at the time, it does get better. And it's a lot easier, once you’ve sort of crossed the hill, to see past the hill. You can't see what's on the other side until you have reached the top. In my first round of chemo, I went to like a dark place mentally because I was just unwell, and it just seemed like I was never going to get better.

I said I'm not going to do this again. I physically can't or mentally can't. But once I spent a few days at home and I got better, I was able to look back and say that was bad - but I can do this now that I know what I've got to do.

How you choose to approach it can be different for everyone. I think it can help to laugh about certain things, but obviously that's not appropriate for everyone. See how you feel with it, make it clear to your friends what you're comfortable with.

The one thing I didn't want was my friends treating me differently. You're in a completely abnormal situation but want that little bit of normality. The normality of your friends.

If people start treating you a bit differently because of your diagnosis, you tend to think about that diagnosis more when you just want to focus on being normal.

Support is out there

There’s people and organisations that provide support on things like education or disability allowances and all these other things you need which you may overlook while you’re concentrating on getting better. A lot of people might not think about seeking out things like personal independence payments or fitness to work, but it’s important. You want to think about the future and what comes after treatment if you can. I think a lot of the time you get a bit sucked into what's happening in the present that you're not able to sort of see anything else and that's why these things can get overlooked.

It's good to have someone advocating for you to make sure you get what you need, not just from a medical perspective but for all aspects of your life. Organisations like TYAC, which provide information on where to go for support and resources to help people understand their diagnosis, are really helpful.

A lot of the time, information will be just sprayed out at you and before you get a chance to really understand or think about it or even do your own sort of studying, you're expected to make a decision, so anything to make that easier for patients is helpful.