I've had four different diagnoses of cancer, the first of which – rhabdomyosarcoma – was in 1999, when I’d just turned one. I’d started being sick and one evening my mum felt my stomach, which was hard and solid. She took me to the local hospital, where they transferred me straight to Sheffield Children’s Hospital for emergency surgery. This was followed by radiotherapy and chemotherapy.
I was diagnosed with cancer for the second time 17 years later, in 2016, when I was 18. I’d spotted a lump at the back of my tongue while I was cleaning my braces, which I ignored for a few days and before noticing the unsymmetrical appearance it had compared to the other side of my tongue. At this point, I was unaware that this was a tumour that had spread to the lymph nodes in my neck and was pushing onto my ear drum, which consequently gave me a constant, throbbing ear.
After investigations, I was told I had squamous cell carcinoma, which is a skin cancer, but it was on my tongue. For this, I had laser excision surgery, a neck dissection on the left side, and 33 rounds of radiotherapy at St James’s Hospital in Leeds.
In spring 2020, I received my third diagnosis of cancer. It was again squamous cell carcinoma, though it wasn’t a relapse because it was a new primary lesion. I had the same surgery as before and a neck dissection on the right side this time, but luckily, as it was first stage, there wasn't any treatment needed this time.
Then in 2022, having been under surveillance scans on my neck since my third diagnosis. They picked up a change in my neck again and confirmed a thyroid mutation. I had my thyroid removed as well as a third neck dissection.
My most recent diagnosis came in January 2025. I was diagnosed with tongue cancer, which required surgery, and I am currently in recovery.
Primarily from the first cancer and its treatments, I've got a lot of ongoing, long-term side effects - called ‘late effects’ - which have had, and continue to have, a huge everyday impact on my life.
My late effects
The main late effect I suffer from is kidney failure. It has to be monitored frequently and as of August last year I am now on long-term dialysis treatment. This condition impacts my energy levels, leaves me with extreme fatigue and affects my breathing, while I’m susceptible to water infections as well.
I also have ovarian failure, and because of this, I haven't had puberty naturally. I’ve never had monthly periods and had to start hormone replacement therapy in my early teens. I was injected with growth hormones every night for eight years, to basically do everything that my body should have been doing but couldn't because of the damage the treatment had done.
I have heart failure, too, which I was diagnosed with around 12 years after my initial treatment. I was in Year 10 doing my exams at the time and had been regularly feeling breathless. When it was diagnosed, it was another huge shock - I just couldn’t understand how I had heart failure so many years later.
The medications I’ve taken for this have also caused me problems, such as being prone to gout attacks, and have taken some time to get right. Now that I’m on the right medication, I don't feel the everyday impact as much, but even up to last year, there would be times where I’d feel more breathless, I struggled to walk and would be waking up in the middle of the night.
While these issues mostly stem from my first cancer, my second one also left me with a few. Sometimes my ear gets a bit blocked, so my hearing goes a little bit funny, just very slightly. I was also left with a dry mouth, and I have to have an adapted diet. I can't have drier food, or things that are drier have to be made moister by adding a sauce or something like that. I can eat a full range diet now, but at the time when I was transitioning, this impacted my energy levels because I wasn’t getting the nutrition I needed.
Clinics, scans and appointments
I have to do quite a lot of self-management, staying on top of all the hospital appointments, scans and clinics. Among others, I have clinics for heart failure, kidney failure, ovarian failure and gout, along with physio for the head and neck. There's just so much to coordinate and think about, and this can be fatiguing in itself, and add to already present anxieties.
When I had numerous investigations and surgery before and after I was diagnosed, I had 64 appointments. Generally, there tends to be around 40 each year, which is still a huge amount.
One way I try to stay organised is by using a spreadsheet to keep track of every appointment, all the contact details, every medication change. It's all on one thing. I also put them all in my phone calendar, so I can see, week by week, what I have.
Even being naturally organised, there’s still so much to think about. I've had many times where I've been given two appointments on one day. And you've got to work out, is it doable? Last year, I had three appointments in one day and two were back-to-back. I turned up at the wrong hospital because there’s two in Leeds.
Then I have to make sure my mum can take me or see if she can come with me, so she needs to be aware of them, too. That’s just the logistics - I need to think of questions, and if there's anything that needs to be brought up in appointments and try to remember what's happened since the last one, or what's relevant to even mention from one department to another. It’s a lot, but I think because I've been used to it from being little, it's not probably as overwhelming as some people might find it.
People's perceptions of life after treatment
I think that once you’re done with treatment or that little bit of recovery that comes after, people often think you're okay. They don’t quite understand these conditions that you’re living with, how they’re linked to cancer, how they impact you at different times and how they will continue to impact you and how that’s not going to change.
People need to understand that though a person may have finished treatment for cancer, and the problems they’re facing may now not be life-threatening, they still play a massive part in your life and your health can fluctuate at different times.
At the moment, I'm loving everyday life and what I'm doing and my routine. But a few months ago, that wasn't the same story, when the fatigue was in its prime and I was having to take naps numerous times a day. I was having to plan my days out, and I knew I wouldn’t be able to do more than one thing a day because of how I was feeling. I think people need to understand that you know your body and you’re not just making it up as an excuse not to do things and that it can be unpredictable as well.
I'm quite lucky that my friends are very supportive and understanding. The key thing that people can do to support someone is to just be compassionate and prioritise their needs. There's going to be ongoing conditions, so just ask and listen, and aim for understanding.
Living beyond cancer information pack
Raising awareness
Raising awareness of late effects and life after cancer, in both the public and medical professionals, is incredibly important to me. I want to share things others wouldn’t know unless experienced in some way personally and help them understand what cancer journeys are like.
That’s why I started documenting my journey on social media with Facebook and Instagram pages and would later speak at CCLG’s annual conference for those involved in the treatment and care of children with cancer. It was after this event that I realised the importance of speaking out, as without the first-hand input and feedback from what we've experienced, it’s going to be hard to improve services and support for patients.
It's an important discussion to be had and I feel it does need to be understood more, particularly as it’s such a broad and complex thing. For example, you might have two people who had the exact same cancer and been treated with the exact same treatment, but the late effects may vary quite differently.
Hearing lived experiences is a powerful thing and that’s why I’m working with CCLG to get the message across and help spread awareness further.
My advice to others
One thing I always try to remind myself of is something a nurse told me when I was on treatment. She told me that while the days are long, the months are short. For me, this was so powerful. I realised that while particularly bad days might feel like forever, you’ll look back in a few months’ time and think how much progress you’ve made and how you’re in a different space.
I’d also advise to communicate with whoever you feel is your support network, whether that’s friends, family, professionals because I think that really makes a difference. It's also so important to make sure you ask questions of your medical team as well and let them know what you’re going through.
Each person's going to be so different, but I think any level of communication's vital because you can ask questions, and I find it helps me to digest what's been said by sharing it with other people. If they then ask me questions, I'm thinking about it a bit more, which helps to process things.
I think it’s also important to reach out to other young people who have experienced similar circumstances or are living with late effects as we can understand each other's worries and daily lifestyles for what they are. We don’t have to over-explain ourselves and it can feel refreshing to be able to talk to someone, a similar age, who understands exactly what you’re saying or experiencing. This makes for a very different, and comforting, kind of support circle.