I was diagnosed with APML after my parents noticed I’d developed some unusual bruising and took me to my local A&E, where I had my bloods taken. A few days later, I was being told I had cancer and would spend six months in Great Ormond Street Hospital. I was treated with four blocks of chemotherapy, before entering remission. However, three years later, aged 12, I began to get severe pains in my legs, which were initially wrongly attributed to growing pains. After I developed a headache and saw flashing lights, I then went to my local hospital one evening, where I had a brain scan.
Tests confirmed I’d relapsed, and this time I received intensive chemotherapy followed by arsenic and ATRA (all-trans-retinoic acid) treatment as both outpatient and inpatient, and oral chemotherapy as maintenance. It was after my relapse that I had a huge stroke. This left me unable to walk or talk or do anything for myself, and my medical team didn't know what I’d be able to do again. It took a while to recover and at the same time as being on chemo, I was also having occupational therapy, physiotherapy and speech therapy which comprised an intensive rehabilitation programme. This was incredibly tough, and little did I realise that even once I’d overcome this and finished my treatment, I’d still be facing many more challenges.
The long-term impact of childhood cancer
Although I’m many years post-diagnosis, I’m still living with the effects of cancer and its treatment. I’ve been left with a multitude of long-term side effects – known as ‘late effects’, which impact every aspect of my life.
I’ve got intracranial hypertension, which is fluid on the brain. I’ve had 13 brain surgeries for this, including having a shunt put in. I suffer from chronic migraines and chronic fatigues, the exhausting nature of which affects me every day. I have urinary dysfunction, issues with my thyroids and Postural Orthostatic Tachycardia Syndrome (PoTS), which means my heart rate shoots up when I stand up. I also have focal epilepsy, and I've been left with problems with my memory and facial recognition from the stroke I had.
On top of all these long-standing health issues, I was diagnosed with heart failure in September 2019. This came as a massive blow and is probably the toughest of my late effects to come to terms with. Coming so long after my treatment - 11 years – it was such a shock. I couldn't believe how it could suddenly impact my body the way it has.
For all these conditions, I need to be monitored, and I’m under the care of seven or eight different teams, which is a lot. I’m at the hospital frequently for scans and check-ups and this can be really draining emotionally.
The realities of living with late effects
There’s a perception that once treatment finishes, your life returns to ‘normal’. For many of us, this isn’t the case, especially if suffering from as many debilitating late effects as I do.
Most people, if not physically but emotionally, are impacted in some way from their cancer. A lot of us do change in whatever form that is. The reality of how my life has changed and the fact that I’m on a completely different path to my peers, because of my cancer and its treatment, is something that’s taken a huge amount of time to come to terms with.
My life’s been impacted this whole way through - employment, schooling, relationships, everything. It’s taken a mental toll and I think it took me so many years not to compare myself to peers I'd been at school with, or dwell on things like I had or hadn’t done, like go to university.
It’s deflating when you know you're not able to do what others can. Even now, I have to pace myself if I’m out and then make sure I have two days of rest after because of the fatigue. And, because I had the stroke, I’ve got issues with my memory and that’s where I struggled with education and taking exams.
There’s a financial burden, too, which I don’t think people realise. I’ve had to give up my job working with children with special educational needs. I'm still living at home and, ideally, I wouldn't want to be at 27. But while I can't work and do still need support, there's no other option. A lot of my healthcare's had to be private, too, which my mum pays for and I'm fortunate she's able to. We’re not rich, though - we’re just normal people who don't have holidays and other luxuries because we pay for healthcare instead.
So, my life is very different to others, and I think that's difficult to navigate as a young person. I think, in some ways, comparing my life to others will always be with me and where my life would have gone had I not had cancer.
It's natural and what we all do, but you also need to move forward and think, ‘this is my path, and this is where I'm at’. I’m stronger now, but it's taken me 15 years to get to this point.
Raising awareness
For me, there’s a real need for more awareness of, and highlighting, late effects. The physical impact and the emotional trauma of children’s cancer is something society doesn’t really talk about. Having had a cancer diagnosis and resulting late effects really does impact every single part of your life. That’s why I’m so passionate about advocating for childhood cancer survivors and why I’m determined to be a voice for them, to help change perceptions and increase support and understanding.
It’s also so important in helping other patients and survivors know they're not the only ones going through these experiences and feeling what they do. I think that's huge and really helps because it can be a very lonely place. When you're especially unwell, I think knowing there is support out there and that hopefully things will improve, is massive.
Awareness is improving, but there’s so much more to do. I run an Instagram account that I started when I was diagnosed with heart failure, because I felt there was minimal awareness there of this, or some of the other health issues I’d experienced because of my cancer treatment.
When I started to talk about late effects around seven years ago, there really was minimal support and no one really talking about them. Now, there's so much more discussion – more awareness than there was - but there’s still a long way to go. We can always do more, but it's really encouraging to know that people are talking and, hopefully, people are listening, so that support for patients can develop.
Research is so important
Things are changing for the better, thanks to research that’s helping find kinder, less invasive, treatments – resulting in less long-term impacts for the patient. This is huge - maybe for me, right now, it’s not going to improve my life, but it's going to improve the future. I think that's so important, that other young people haven't got to go through all of this. It would be great to get to a stage where all children not only survive but do so without all these side effects.
We also need research looking at support for people with late effects, and that’s why the work of charities like CCLG, who fund research across the whole cancer journey, is so important. The more research we have, both into new treatments and how to support survivors, the better for future generations.
Hopefully, by speaking out about my experiences, people might want to donate and help fund such research.
My advice to others
If I was to offer advice to other young cancer patients, it would be to just try and enjoy and cherish every day. I know that sounds clichéd, but there'll always be something good in there, if you look for it. Try to do things – even if you can't face going to the gym or seeing a friend for a whole hour, just see someone for 10 minutes instead. I think even doing things in small bits is better for your mental wellbeing than nothing at all.
I’d also say to give yourself time and be kind to yourself. When treatment finishes, life doesn’t just go back to what it was before and, often, neither do you. So, it’s important that you just give yourself time to adjust. Enjoy life and take the time to process everything that you've been through. It’s important to be kind to yourself, even if it’s sometimes frustrating that you can’t do what others can.
Having a good support network is really important as well: ensuring that you have people to talk to, whether that's friends or family, or even reaching out to others who have gone through similar experiences, or charities, as there are so many fantastic ones who are there to support.
From a medical perspective, I’d advise people to keep pushing if you’re concerned about how you're feeling and ensure that you have the support to be able to advocate for yourself. You know your body and should listen to it. If you feel that there's something not right with you, don't stop telling people until you’re listened to.
Support for children’s cancer survivors
One way people can support children’s cancer survivors is just by being there and being a friendly ear: sending a text, seeing how they are and listening to them if they want to talk. By doing so, you’re not just supporting them emotionally, but you’re able to understand what they’re going through and why they might not be able to do certain things, and in turn, how you can help them.
Medically, I think there needs to be more support for what’s to come for patients when they finish treatment. It’s important that families are aware of what can happen so they can be prepared for it. I wish I'd known that it could be this long for me to get better.
I'm in a better place than I’ve ever been, but I wish I was a bit more prepared in the knowledge that late effects can be long-term, or that they can come on so much later, like the heart failure that came on four years ago.
I think there needs to be more information about the appointments and scans you’re attending, too – what they’re for and what’s going on. I also think it’s so important that patients are listened to – we know our bodies, and if we think something is wrong, then there needs to be more faith in the patients.
A final message
I don’t want my story to worry people – while I’ve been left with a lot of late effects, they don’t impact everyone in the same way or to the same extent. I’m extremely hopeful that with the newer treatments that are available now and that continue to be modified and found, late effects won’t be so impactful for childhood survivors in the future.
I’m so grateful to be alive and I really do find joy in every single day. That’s one great thing that cancer has given me - a deep love for the world and being alive, and an appreciation and enjoyment of the little things in life.