Ross's story

Ross Long was 16 years old when diagnosed with abdominal B-cell non-Hodgkin lymphoma in 2013. Here, he offers advice to young cancer patients and those around them and tells us what he wants people to know about having cancer as a young person.

When I was diagnosed with cancer, there was a chain of events where everything seemed to happen very suddenly. One morning, I woke up with an awful pain in my stomach but put it down to cramp or something I’d eaten. I managed to make my last GCSE exam but had to run out to be sick a couple of times, so assumed I had a bug.

I felt well enough to go to Glastonbury festival later that week, but while there, I barely ate a thing. I’ve always eaten a lot of food, especially at 16, but my appetite just wasn't there. I very quickly, and noticeably, lost over a stone weight. By the last night, I was in agony and came home early.

My advice to any young people worried about their health is to go and get seen right away. Listen to your body - at the end of the day, you’re the one who knows it and if you think something’s not quite right, you should go and get it checked out.

A couple of days later, I was in so much pain that my parents and I thought we better go to the hospital. My local A&E at Paulton quickly sent me on to Bath, where they did an assessment and an ultrasound. They saw that I had an intussusception, which is where the intestine slides into an adjacent part of the intestine and can often block food or fluid from passing through.

Little did I know that it was a tumour that was causing this.

The medical team said they needed to do some assessments before deciding on the next steps. However, that night I had my school prom, which is a massively important thing at that age, and I was determined to go. So, against the doctor’s best advice I discharged myself and promised to be back first thing!

I went to prom in agony - dressed in what was by then an ill-fitted suit - before going back to the hospital the next morning where that day I was operated on to remove 10cm of my small intestine and what we now know was a tumour.

After around 10 days in hospital, I was allowed out to begin what I thought was my recovery. But almost as soon as I was home, I received a phone call telling me to come back in with my family. Obviously, when you hear those words, you join the dots and assume bad news.

We got to hospital and the doctors told me they’d found a tumour during the operation, and they’d done a biopsy on it, and it was cancerous. Hearing those words, everything kind of just went blurry and everything else they said didn’t really register, I didn’t hear them say the cancer was aggressive yet treatable.

It just felt like someone had got the remote and pressed fast forward by mistake and everything around me was imploding.

My treatment and its effects

Treatment began at Bristol around a week later, so it was all very quick. One minute I seemed fine preparing for my maths exam, the next my life had become hospital appointments, gruelling chemotherapy and lumbar punctures.

Looking back, I didn’t feel too bad until after the first couple of rounds of chemo. After that, I began to be sick, perhaps 20, 30 times a day. Even the smell of food would make me sick, which was obviously the chemotherapy doing that. For someone who loved food, having that taken away, was really hard.

And then, as the treatment went on, I started to lose my hair, which, as a young person, was a really big thing. I think that was the moment when the gravity of it all really hit home. That change in appearance, with things like weight loss as well, that’s really tough. The drugs make you puffy as well. I remember my face becoming really round and just looking at it myself and not recognising myself at all.

I also developed ulcers. I remember how sore they were, it made it really hard to even drink water.

I think there’s a common misconception that once you finish treatment, that’s it. I think a lot of people don't realise that’s when the hard work happens. When mentally it can be really tough, because it’s when you start to reflect on what's happened.

Another thing that affected me hugely was the loss of concentration. The treatment makes you so tired that focusing is just impossible. Reading a book was a no-no, so was watching TV. I think there’s a misconception that, yes, you will feel bad from your treatment and stuck in a hospital bed, but you can watch a lot of Netflix. But you can’t.

I used to draw a lot and have a passion for drawing, that all just left me for six months. And I’d gone from being a busy teenager, with all my schoolwork and a thriving social life, to just stuck in this room. I thought I was lucky enough to have my PlayStation in there, but I couldn't even bring myself to turn it on.

You just want to sleep all the time - 90% of the time you just want to have your eyes closed and just battle through it.

Finishing treatment

I think there’s a common misconception that once you finish treatment, that’s it. I think a lot of people don't realise that’s when the hard work happens. When mentally it can be really tough, because it’s when you start to reflect on what's happened.

There were no balloons, there was no ‘cancer-free’ party, when I finished treatment, especially as mine finished earlier than planned, due to the damaging effects the drugs were having on my kidneys. The doctors told me my body couldn’t take any more but they were certain that what I had received would be enough. That was hard, because it would always play on my mind – had they really worked? Had they done enough?

I’d also attend regular follow-up appointments, which were great because you got to ask any questions and they’d almost do a full body MOT, to ensure you were heading in the right direction.

But they were also really scary.

Leading up to them I’d be racked with nerves, because there was always that scary thought playing on my mind, that my cancer had come back, that it was going to pop up again at any moment. Getting the all-clear was just the beginning. On paper, I’d been cured but the invisible, psychological imprints remained. Dealing with the fears of relapse and the unprocessed trauma was constant and is still something I’m still battling now.

Readjusting to life after a cancer diagnosis

Going back to school was tough in many ways, but it had been one of the things I couldn’t wait to do. Before my diagnosis, I saw it as a great place to learn and be with my friends, but also found it a bit of a chore. But, when I was in hospital or not well enough to go, I couldn’t wait to get back, for a bit of normality and to be just like any other pupil.

One of the things I found hardest was being treated differently by people – even those with the best intentions - and feeling alienated from my peers. Fortunately, I had a good group of family and friends around me, and they’re the foundations to getting better. I remember speaking to my mates, telling them I wanted them to treat me the same as they did before, to keep telling the usual jokes.

My advice to people is don’t treat young cancer patients any differently and don’t alienate them. It can be hard not to do that, but going into school and laughing and joking with my mates made me feel normal.

It was hard in terms of my studies, too. I had a lot of catching up to do, but it just made me more determined to succeed and I had to put a lot of work back into it. So, when I was out, out treatment, I would be working until late making sure I caught up on work. And then when once treatment was done, I was obviously halfway through my, my sixth form, so I applied myself even more.

There was the risk of burnout, but I was so driven to not let my circumstances hold me back. I was fortunate to have the support of my family, all my friends, and my teachers, who were amazing, allowing me to stay till 7:00pm sometimes.

My advice to young patients

At the time, it feels like your life has been put on hold and that feeling doesn’t dissipate but try to remember that it isn’t for ever. Going through this will make you a far better person and will allow yourself to have a better outlook on life.

Surround yourself with the right people and do things that make you happy. I think there’s a perception that when you have cancer, you can’t do anything, and everyone has to wrap you in cotton wool. But, where I was up to it, I’d still take myself to the gym or go back to football training. I went to house parties and had a good time. My doctor said it was fine, so as long as you take precautions, don't let cancer stop you from doing what you love.

What I want people to know about having cancer as a teen

As an adult we kind of celebrate being different as a great thing, but when you’re a teen, no matter how many times people tell you being different is the most amazing thing, you don’t want to be different. Now I’m older, I love the differences I have to my friends and my peers, but when you’re 16, you don’t want to be different as such, especially physically.

My advice to people is don’t treat young cancer patients any differently and don’t alienate them. It can be hard not to do that, but going into school and laughing and joking with my mates made me feel normal.

There were no balloons, there was no ‘cancer-free’ party, when I finished treatment, especially as mine finished earlier than planned, due to the damaging effects the drugs were having on my kidneys. The doctors told me my body couldn’t take any more but they were certain that what I had received would be enough.

So, it’s really important not to isolate people. If you’re organising something, invite them, make them feel a part of things. I remember there was often an assumption that I couldn’t do something or wouldn’t be available, which was never true, so I wouldn’t get invited to things. Asking people to things, it makes them feel included, human and normal, not just the kid with cancer who has to stay in home.

Get checked out if you’re worried about your health

I know from experience just how important it is to get checked out and even now I’m a real advocate for it. If I didn’t listen to my body and carried on under the impression it was a stomach ache, it could have gone a whole lot differently. The doctors told me they caught it at just the right time, before the tumour grew too much.

So, my advice to any young people worried about their health is to go and get seen right away. Listen to your body - at the end of the day, you’re the one who knows it and if you think something’s not quite right, you should go and get it checked out.

You’re not wasting anybody’s time. They’d much rather you come in and be seen and make sure things are right, than for you to feel like that. You can catch things early if you do have cancer. It’s a five-minute conversation, which just might save your life.

Giving back

Now I’m 10 years post-treatment and in a position to give back, it’s something I’m passionate about doing and in April 2023 I'm running the London Marathon for TYAC's sister organisation Children's Cancer and Leukaemia Group (CCLG) to support other young cancer patients.

What’s more, I’m planning to write a self-help book to help other children and young adults struggling with a cancer diagnosis. I’d be honoured to hear the stories of other children and young adults who have been diagnosed and their experiences with cancer, to ensure this story is told in the best way possible for the cancer community.

If this is something you feel you could help me with, I’d love to hear from you. Please get in touch via my email at rosslong@hotmail.co.uk or for updates, follow my social media channels @rosslong_studio