Yami's story

Yami Moloteni was diagnosed with Hodgkin lymphoma in July 2021, when aged 18. She tells us about her cancer diagnosis and treatment and its impact on her, and offers advice to both professionals and other young cancer patients to help empower young people around healthcare.

Before my diagnosis, I’d been feeling unwell for some time. I first went to A&E in January 2021, when I’d just gotten over COVID. I was having bad chest pains and couldn't breathe, but doctors thought I had long COVID and sent me home with ibuprofen.

I carried on with my day-to-day life: I was in sixth form, doing my A-levels at the time. But the symptoms persisted. It felt like someone was sitting on my chest and I was so out of breath all the time. I'd be walking with my friends to class and would have to ask them to slow down. I then started getting itchiness, and excessively so on my palms.

During this time, I made multiple visits to the GP, but they didn’t seem concerned. Then, one day, I just felt so ill. I was really hot and then really cold. I couldn't lie down because I couldn't breathe. It was just awful. Every time I took a deep breath in, it felt like I could hear crackling. My mum decided to call 999 and I ended up going into hospital. They did all their checks and found that my lungs had filled with fluid. I was kept in hospital for around a month, first at Milton Keynes and then Oxford Churchill Hospital, where I had my biopsies and received my diagnosis of Hodgkin lymphoma in July. I started my medications and steroids, before being sent home around mid-August. I was just getting back into the swing of things at home, when, on the day I got my A-level results, I got a call from the hospital to tell me I was starting chemo the following week.

This should have been a really happy time. I got the results I wanted and was preparing to go to university and then, just like that, I had all those plans ripped apart.

Instead, I was thrown into the lonely, isolating world of cancer treatment.

My treatment

I had chemotherapy from early September until December. The plan then was to try a new immunotherapy drug, but over Christmas I began feeling out of breath again and had a temperature. Back at hospital, I was told that in the short time since stopping chemotherapy, the cancer had grown again.

The immunotherapy plan got pushed back and I did a few more months of chemo, before we finally got a scan that was looking positive. Everything was shrinking, but we went ahead with the immunotherapy just to make it a bit smaller. The immunotherapy, unlike chemo, wasn't attacking the body, but was boosting my immune system. So, I didn't feel all the intense side effects I'd been feeling previously, like sickness and fatigue.

Instead, I’d go into hospital for these hour-long infusions and then I'd go home. That was a much kinder treatment to go through, and I could get on with my day-to-day life. However, it didn’t work as well as hoped, so I did radiotherapy for all of August 2022. About halfway through radiotherapy, my lung collapsed. I was really struggling and ended up spending even more days in hospital trying to fix the segmental lung collapse while also having the radiotherapy.

After radiotherapy, we sat down with my consultant, who thought a stem cell transplant would be the best way to make sure we get all the cancer out and to make sure it doesn't come back. I had the transplant in November 2022 and that was intense, mentally and physically. I couldn’t eat and I stayed in hospital for just under a month, which was really isolating. We live in Milton Keynes and my hospital was in Oxford, an hour-and-a-half away. My mum and dad both worked and had to juggle visiting me with looking after my younger sisters.

I took the transplant well and when I had a scan in January 2023, it was positive news. It wasn't remission, but it showed the cancer was basically gone and there was only a little bit left. I didn't go back to hospital for six months and started getting on with life again. I was busy working and went on four holidays. It just felt really good. And then, I was told I was full remission at the end of July.

The impact of my cancer

People see you’ve finished treatment and think you’re better now, but cancer impacted everything for me. It’s left me with so many invisible scars, the emotional impact that no one really sees. So much trauma that I’m now trying to come to terms with. I mean, I still can’t comprehend that 18-year-old me thought I was going to die.

Cancer has also impacted my education, work and social life. Everything takes me so much longer to do and I feel like it’s left me two steps behind everyone else. It’s also left me questioning everything, comparing myself to others. It’s that constant game of ‘what if?’ – what if I didn’t have cancer, where would I be right now? What if I asked them to do some more checks when I first went to A&E, would things have been different?

How therapy has helped me

During my two years of treatment, I completely neglected my mental health. I didn’t really speak about my cancer and didn’t really process it until I got the all-clear.

Therapy has really helped me to talk about my feelings. I don’t know where I’d be without it. But, I wish I had it sooner and, more so, I wish someone had properly explained the benefits to me. I was 18 - I didn’t know many people that age talking about their feelings.

I didn’t really want to sit there talking to a stranger about my problems. Why would I want to tell that person about my life?

It would have made a world of difference, and it did in the end, but maybe if I’d have been talking about the stem cell transplant, for example, when it was happening, that whole period would have been a lot easier for me to get through.

I’d advise any other young people to take this support when offered, but also for hospitals to make sure that they understand how it may help them, and if they don’t want it, they at least have somebody to talk to.

Why I’m raising awareness

Raising awareness is so important in so many ways. Firstly, I think if I'd have known some of the symptoms like the night sweats, the itchiness, breathlessness, I would have caught it earlier.

I feel like everyone thinks it's not going to be them until it is. So, if you know the symptoms, you might be able to then raise them to your doctor and be more confident in speaking up. It could potentially save lives.

I feel like raising awareness really helps people know they’re not alone in this, too, which is really important. You want to people to be in a position where they know where to get support. Who they can speak to, who they can reach out to. What chemotherapy is going to look like, and the side effects, for example. All those things.

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

Don't just assume that something like this won't happen. Until it happened to me, I’d never even thought about having cancer. I didn’t think it was something that would ever affect me. And then it did. So, if something isn’t right, get it checked.

And be prepared to advocate for yourself. When I first went to A&E, I knew something was wrong, something worse than long COVID. And six months later, at the GPs, I couldn’t breathe, I was really struggling, but I was sent home and told to put deep heat on my chest and take paracetamol. I look back in hindsight and think how on earth did I leave that room with that advice, but I didn’t want to question someone who I saw as knowing best.

But now, I know you can question things. At the end of the day, it’s your body, you know it best.

How can we empower young people with healthcare

We need to not only give young people a voice but make sure they’re listened to. I think back to all the times I was dismissed before my diagnosis, or not taken seriously, and these were all are really formative experiences that could have impacted my relationship with the healthcare system.

These situations make you wonder what’s the point and could impact someone seeking support the next time they need it, or getting symptoms checked out. I do wonder had it been my mum going to the GP saying the exact same thing, would they have taken her a bit more seriously?

We also need to recognise that a younger person, with little understanding of the world, may need things explaining to them in a bit more depth. I was 18 when I was diagnosed and knew nothing about the world, let alone cancer, and it was such a confusing time.

My consultant, Dr Collins, was great. He was empathetic and adjusted the way he communicated to me, and I feel that’s something that all professionals should be doing with their patients. He took his time speaking to me and would recognise that although I was an adult, realistically I’d been an adult for just six months. I was fresh out of school, with zero life experience and now trying to understand lots of medical terms and jargon. Dr Collins would say to record conversations in case I wanted to listen back to them and email him with any questions. Just putting these things in place made me feel much more at ease.

I know that not everyone is like Dr Collins and some people don’t get that support, which could make a world of difference. That’s where the work of organisations like TYAC, who help educate professionals in communicating with young people and understanding the differences between them and an older patient, for example, is really important.

A message to other young people with cancer

Don't be afraid to ask for support when you need it. If you’re really struggling with something, ask for help. That might mean opening up to random people about how you're feeling, or speaking up if you don’t understand something. For example, I had one drug and it made me feel really sick. I just carried on taking it. It got to the point where the side effects became too much, and I had to ask for something new. The only person you're affecting by not speaking up and advocating for yourself, is yourself. Nobody's going be upset that you've asked for help. Speak up for yourself and be confident in what you know.