My experience going from ‘cancer kid’ to doctor

Joining the Young Lives vs Cancer Voice Board this year, unsurprisingly, has led to lots of reflecting on my experience of cancer. Coincidentally, this year also marks 15 years since my diagnosis. I have never felt the need to acknowledge my ‘cancer anniversary’ – to be honest, I had to look through old paperwork to even find the date.  

However, this year feels particularly poignant as in a few months’ time I will be graduating from medical school and starting work as a junior doctor. It feels pretty cliché, to go from ‘cancer kid’ to a doctor, but I’m proud of myself and everything I’ve achieved in the last 15 years.  

I’ve grown in confidence discussing my cancer over the last few years, in part through my medical education, and largely through my work with Young Lives vs Cancer. One of my biggest concerns with publicly reflecting on my experiences is the fear of invalidating others. It is very important to emphasise everyone’s thoughts and feelings are unique, yet equally insightful. As part of my Voice Board training, I was once told to make “connections not comparisons” and I hope that resonates as people read this.  

My diagnosis  

Let’s start from the beginning, 1 June 2010, aged nine, I was diagnosed with acute lymphoblastic leukaemia. Diagnosis was not the smoothest, it took quite a lot of re-presenting to the hospital and being a very unwell child before someone decided to perform a blood test and identify a serious issue was going on.  

We are taught in medical school about breaking bad news using various frameworks. There’s an emphasis on finding the right setting, delivering warning shots and avoiding any wishy-washy vocabulary. When delivering bad news, it’s very important to say the literal diagnosis.  

We’re told to give patients a lot of time, not to overload with information as none of that is that important initially. All they hear is something scary and need time for that to sink in. After learning about this framework, I cannot explain how much it resonates with my individual experience.  

We had the most amazing paediatrician explain the diagnosis. He spoke to my parents beforehand, and to this day, they still talk about how brilliantly he delivered such news. He gave them the option of shielding me from the details, or to try and explain what was happening. I’m so beyond thankful my parents chose the latter.  

I remember vividly being taken into a private room with my parents, the introductions, and pleasantries. I remember being asked ‘what do you know about cancer?’ and choking up unable speak and miming an action to represent dying. My mind then blanks. No matter how hard I try I do not remember hearing anything other than the word ‘cancer’. 

Society’s fear of cancer 

This leads me onto one of my first big passions regarding cancer and societal perceptions.  

Societally we fear cancer. It’s a big scary bad word. Historically (at least I absorbed this idea) it’s been almost synonymous with death. This fear is felt. Even if we try to bubble wrap our children, they’re clever and perceptive and pick up on adults being scared. We cannot protect children as much as we think we can.  

Cancer is scary. I am not disputing that. But not all cancers are the same. And they’re not the only scary diagnosis a child (or adult) can be given. Our fear (at times) is disproportionate to the point it hinders care and treatment. 

It’s a controversial opinion but growing in popularity and weight, that we need to reevaluate the language we use surrounding cancer. We need to really deliberate if we are too pessimistic and militant in how we discuss cancer and treatment.  

Terminology such as “battling cancer” or “losing the fight” creates a potentially harmful and fearful narrative. For those who survive, it can lead to identity struggles and survivor’s guilt. But also, for the poor individuals that do not make it through treatment, regarded as losing the battle, can seem insensitive?  

It is a fine line between naivety and optimism. I strongly believe in the power of optimism and living every day as it comes. I am from a family that never entertained the idea of any other outcome, and we just focused on living every single day. 

The privilege of normalcy  

I was lucky to receive some incredible care throughout my treatment, both medically and socially. My school was incredible in facilitating my education. I was lucky enough to attend as close to normal as possible. At diagnosis I missed two weeks of school, beyond that I never missed more than a week at a time (which only happened twice when I was hospitalised for cellulitis infections), and half days/ full days off for chemo appointments depending on if they were local or further away.  

I was so privileged in my experience of cancer to be able to have a school that could facilitate me being ‘normal.’ They provided my year group a lesson on leukaemia and what to expect when I returned. I had a netball club that let me continue to train and play when I felt up to it. I had doctors that encouraged me to live normally.  

I was beyond lucky that my family (in the most part) lived a normal life and were not financially implicated secondary to my cancer. I had parents whose work gave them the leave to take me to hospital appointments on short notice without having to take a pay cut.  

We were very fortunate to not be heavily impacted by the countless hidden costs- such as taking leave, fuel, parking or organising accommodation near to the hospital.  As a result, we didn’t accept help or support from charities at the time. However, the role these organisations play in ensuring others can have even close to the luck and stability I had is so absolutely essential. 

Rejecting the ‘survivor’ label 

I had my final course of treatment in Year 7 which came along with its own challenges. Previously I had been at a school where I was very much identifiable as the kid with cancer, but secondary school was my fresh start, and all the new peers had no idea about my past.  

This led to me trying to detach as much as possible from it. I tried to avoid talking about it, the palpable awkwardness when it was mentioned, the pity and/or sympathy offered always made me want to cry. I hated feeling different.  

Along with this became my distain with being referred to as a ‘survivor.’ This is never something I’ve felt comfortable with. I appreciate the power it holds for a lot of people and it’s really important to emphasise that it’s not my place to say who should and shouldn’t use such labels. 

 If using the ‘survivor’ label resonates with you, I would never suggest someone stops using it. As already stated, I come from a place of privilege, with my experiences, to be able to reject the label so easily.  

To my family and I, cancer wasn’t a choice of surviving or not. We didn’t really treat it as an option not to live. As mentioned above we focused massively on living as normal a life as possible. I don’t feel I survived anything; I had no choice in what would happen with my cancer. 

The treatments are rough, the side effects are rougher, but all I could do was exist and receive them. None of my living was a choice I made; it was all thanks to the incredible healthcare workers and researchers that the prognostic statistics were in my favour.  

I had good odds and was lucky enough to stay on the right side of the stats. I am so grateful to be a lucky one and almost in solidarity with those that are less fortunate it feels unfair to brand myself as someone who earnt my way to live as if those that died didn’t. I alluded to the controversy of this discourse earlier, but that doesn’t negate its importance to me.  

As I distanced myself from the survivor label. I distanced myself from my cancer in its entirety. I hated this idea of being defined by my leukaemia. I am much more than my leukaemia and I knew that. It’s so rare for a disease or illness to become someone’s identity but is so common with cancers. Only recently have I found the ability to reconnect with my experiences and talk about them openly. I’ve been able to reclaim my diagnosis without over-inflating its role in who I am. 

Life after treatment and misplaced guilt 

There was a big adrenaline crash on completion of chemotherapy. In the three or so years of my treatment a lot had happened externally for my family including the loss of three grandparents where grieving had to take a backseat as my health took priority.  

The next few years I think everyone in the family truly started to process the whirlwind of the previous years, but none of us were very good at talking about it. Looking back, this is where we should’ve contacted Young Lives vs Cancer for post treatment support. One of my big motivations for getting involved with the charity is to ensure that this part of the care is promoted and encouraged as much as possible to all young people and their families.  

One of my greatest struggles was and still is what I have learnt to call misplaced guilt. As said before, chemotherapy treatment is rather gruelling and all-consuming not just for the individual but the whole family.  

For nearly three years I felt I occupied all the attention and had to be top priority. My parents would alter their whole lives around ensuring I could get to hospital appointments, but also to try and find me activities where I could feel normal and enjoy myself while being immunosuppressed.  

I held guilt around occupying their thoughts and complicating their own individual grieving for their parents. I still feel guilty about words said during intense mood swings precipitated by high dose steroids.  

I still feel lots of guilt for my brother. I was diagnosed when he was in Year 6 and transitioning into secondary education. This is such an exciting time in a young person’s life, but I feel it was completely overshadowed by having to be the brother of the girl with cancer. He was so selfless in never complaining or acting up throughout those years and has never once held any resentment. I do not praise him enough for this or express my gratitude enough.  

The lasting impact 

I’m still learning a lot about myself and how I am an individual with insecurities and identity that are completely independent of my leukaemia. But equally some of my insecurities do stem from it and that is ok.  

One of the most recent realisations of this was throughout university I’ve learnt an inability to walk alone into a crowded room (even if they’re all my friends) without intense waves of anxiety. This stems from those feelings of having to ‘face the stares’ as a child. Constantly being looked at and having people whisper about my bald head or steroid-induced puffy face. It clearly brings up those same suppressed feelings. It’s funny how it’s taken a decade to realise how deeply ingrained that feeling is.  

And as much as what I’ve written may read as belittling my own experiences of cancer, I must acknowledge, no matter how much I try and deny its impact, it has changed me. As stated above I’ve more than a few emotional insecurities, difficulties with misplaced guilt and many physical scars that have taken their own time to accept. 

Despite all this, I think one of my most controversial reflections is, in a weird way, I am grateful for my experience. Despite all the scars, emotional and physical, my early exposure with hospitals and healthcare shaped where I am today. I love the fact I am about to become a doctor and genuinely feel an ability to empathise with patients.  

I had to mature at a much younger age than most. But I really don’t mind that, I don’t feel that I lost out on juvenile youth, some of that is from knowing no different, but largely because the insight it’s given me to be a better doctor will hopefully pay off plentiful. 

It’s inspired me to make a much larger widespread impact, getting involved at a national level on how to better cancer care for future generations of young people. Without sounding as if I am having delusions of grandeur, I like to believe that through my individual experience many more children will benefit given the career and goals it’s inspired in me.  

As I stated earlier on, my experiences likely differ to others. Many people may share my thoughts but equally many may feel wildly different, and this highlights the importance of using your voice. We need to hear and learn from everyone to truly ensure cancer care is the best it can be for young people and their loved ones. Fifteen years on, I know one thing for certain – I am more than my cancer, but I will continue to use the experience to help with my future life and career.