Toby

22-year-old Toby was 15 and looking forward to his future when he began to feel unwell. A fit and healthy rugby player, Toby believed his symptoms were just a virus, but it soon became apparent it was something much more serious. Now in remission from acute lymphoblastic leukaemia, Toby is sharing his Spot Leukaemia story.

It was rather ironic that the symptoms appeared whilst doing what I loved: playing sport. I believe the first sign that something wasn’t right was whilst playing rugby about six months prior to being diagnosed. I would play rugby at least once a week; however, within those sessions I began to experience a stiffening pain in my lower back. The onset of this pain would usually kick in during a game and progressively get worse, slowing me down, and would end up causing me to be substituted. It was incredibly frustrating, but I put the back pain down to a muscle imbalance.

I began researching and finding ways of preventing it and I started focussing on mobility training and stretches. I targeted the exercises towards my lower back and, after a short period, the issue almost immediately was dealt with, and my performance suddenly improved again and actually became better. I was relieved that the back pain had gone so I didn’t think any more of it; however, the random onset of it was unexplainable.

I continued to train at my local gym with a focus on getting stronger and fitter in the hope of improving my performance in rugby. Additionally, I was also studying GCSE Sport Studies which, as well as PE lessons, would equate to me roughly doing physical activity at least once a day. I’d never experienced any issues before with my health and had achieved one hundred percent attendance throughout the four years I’d so far been in high school.

Further realisation that something wasn’t right happened during a sports studies practical lesson when I blacked out after running. Progressively, over the following days, I developed more symptoms which led to my parents taking me to the doctor. My body ached, my glands were swollen, I had no appetite and I felt more tired than I did when going to sleep the previous night. When I then developed a swelling on the right side of my jaw, we met with an out-of-hours doctor at a local surgery who prescribed antibiotics, believing it was an infection.

However, within 48 hours a second appointment was made with our GP due to the continuous fatigue, poor appetite and paleness. Whilst we didn’t expect it to be anything more than a virus, the meeting with a doctor was a precaution and to offer peace of mind. Until this point I was a fit and healthy fifteen-year-old, so it was bizarre that I was showing these signs. I wasn’t concerned by what was happening because I just expected to overcome whatever it was within a short space of time. It was at this appointment I was told to go for a blood test to ensure that is wasn’t anything we didn’t want it to be.

On the day of the blood test I was apprehensive because I’d only ever been for one as a child. However, once it was done, I thought no more of it. That evening, I watched television and was enjoying my time at home until suddenly it was all interrupted by a knock at the front door. It was at this moment a sinking feeling hit me as our doctor stepped into our home. I sensed the urgency in his voice, and I immediately remembered the blood test.

The doctor was ushered into our house and I followed into the kitchen. I was confused—why couldn’t he have just phoned us to say a prescription had been arranged for me? The seriousness of the conversation dawned on me as I walked into the kitchen. All I gathered from the conversation was that they were concerned that the blood test had identified an abnormality. I remember after that realisation fear took over my body and I had to leave the room, leaving my dad and the doctor to continue the conversation.

Once the doctor departed from our home, I was hesitant to ask my dad what was happening. Cautiously, he explained the doctor’s instructions. I would need to be on the children’s ward at a local hospital within the hour where they would do further tests to be certain on what was wrong. I remember vividly the moment my dad phoned my mum, who was teaching a fitness class at a local leisure centre, to explain what had just happened. I can only imagine what that feeling must have been for them both.

During the car journey, I remember the sun breaking through the clouds again and my stress decreased slightly as I somewhat comforted myself, thinking it was just some tests the doctors needed to do and, once they were done, I’d be home later that night. I was scared of the possibility that I’d have to stay in hospital overnight. It was either my naivety or the fact I’d never experienced issues with my health before that I believed I was fine. Looking back, there were clear indicators that I was seriously ill and was being cared for as such. Housed in my very own isolation room, I thought this was brilliant, making light of the situation that for the first time I’d got my own en suite bedroom. I didn’t see that this was a precaution to protect me from infection due to my poor immune system. A doctor came into the room and took a sample of blood to repeat the previous test and understand what was wrong.

I felt comforted having my mum and dad next to me in the room; they kept the conversation positive and away from the worrying reality. I was confused as to why a nurse started hauling chairs into my room and chose to sit at the back, cautiously announcing to us that the doctor was on his way. When two men entered the room, I was curious for a moment as to what they were doing—this was until they introduced themselves as consultants. I could read just from their body language and concerned facial expressions as they looked at me that whatever they were going to say wasn’t good.

I began to panic, just like I did when the doctor was at our home a few hours before; I felt my heart rate spike and I began to take fast, shallow breaths. I knew this time there was no escape into another room, I had to face whatever was coming and listen to everything they were saying. I remember the doctors seemed to have different roles in this conversation—the one consultant had the job to inform, whilst the other tried to manage the impact.

Although I was fifteen years old, the doctors immediately acknowledged my maturity, ensuring as I was the patient, the news was to be directed at me. I was still built like a rugby player—the only difference was I looked a bit pale—which is why I was adamant there was nothing wrong. I could see a slight confusion in the doctor’s expression as well, potentially because of this. However, he continued to explain that the results of the blood test showed I had leukaemia, cancer of the blood.

My whole body sank. I felt as if I was shutting down. My parents immediately tried to comfort me, saying everything would be alright. They asked the doctor what my blood results had shown, why did I have leukaemia and what had caused it. All these questions I wanted to ask but I couldn’t even find an emotion or word to build into a statement, let alone a question.

I was still listening to everything that was being said. However, I realised that by not saying anything the doctor had begun to turn his attention to my parents. I became slightly side-tracked by my own thoughts as well. I started to think about everything I’d been doing until this point, going to school, playing sport, my passion for rugby. I also began to think about my plans for the future; it all hit me in one. My biggest decision up until this point was what I would do once I’d finished school. This was going to be the most important conversation of my life. I had this sudden desire to speak, and I nervously asked the doctor if I could still play rugby and go to school. Quite startlingly, this question was met by an eerie silence. Both my parents and the doctor stopped talking and it took a moment for him to think of what to say. It was the first thing I’d said, and it felt like I’d caught everyone off-guard. I remember he looked to the other doctor next to him for what seemed like reassurance. He then explained with sympathy that I could no longer do these anymore due to my illness and the consequent treatment being too much of a risk.

Due to my type of cancer requiring specialist care, the hospital didn’t have the capability to treat me, so I would be transferred to a different hospital. Although the doctors were confident that I had leukaemia, they didn’t know which type I had. I was told a bone marrow biopsy would be done to establish the type of leukaemia and act on that information to treat me. The terminology they were using was so new that it heightened my fear, knowing a lot of scary procedures were coming my way.

There was a small part of me that questioned whether the doctors had got it wrong. I thought about how much sport I’d been doing recently and the fact I only looked pale and felt a bit tired. I evaluated everything and believed that, surely if I did have leukaemia, I would look a lot worse. The only comparison which I had to the illness was a relative who had been diagnosed several years prior. I thought constantly about them during this period as we now had this incredibly significant connection.

I was told the next steps were to formally diagnose the type of leukaemia; I couldn’t appreciate just how impactful this finding would be in shaping my future. Through a bone marrow biopsy, a decision could be made on the treatment I would receive and provide further critical information as to my prognosis. Whatever type of leukaemia I had, I was to be enrolled onto a clinical trial. I understood at this point the harrowing realisation of cancer treatment being experimental due to there being no cure. The bone marrow biopsy was an incredibly bizarre experience, yet I was glad to have it out of the way and hoped for no sign of cancer. Until we were to obtain the result, I tried to keep my mind active.

Later, I noticed the doctors were on the ward and anticipated they were bearing the results of my bone marrow biopsy. I began to feel apprehensive as the doctor approached us. We were taken aside and sat in a quiet area where we could be away from everyone. The conversation started with a rather bizarre opening—the doctor was really pleased to hear I was eating and going to the toilet without any issues. I didn’t quite know how to take this at first, so rather hesitantly I said thank you and saw it as a good sign. The conversation continued and I was becoming more nervous about the impending news. We began to talk about my bone marrow biopsy and the process in understanding what was happening. The doctor started explaining how there are various types of leukaemia. I was naïve to believe at this point that I was still perfectly healthy, and I’d be going home that afternoon to laugh about it one day.

I was instead informed that I had acute lymphoblastic leukaemia (ALL). I was completely stunned, realising at that point that I did have cancer. The period between showing signs of illness and receiving a diagnosis was a week.

It was a short period between receiving my formal diagnosis and initiating my treatment, in which there was a degree of urgency to take control of the cancer. It did make the situation harder when there was no way of visualising the illness; however, I was also aware that the sooner I started the closer I would be to getting better. The first dose of chemotherapy was always going to be an important moment for me. It was made incredibly special by my care team, who allowed my family to come together in order to see me through it.

The initial treatment block lasted five weeks, and within that period as a family we had to overcome the challenges and adapt to the new way of life. I was also fitted with a central line, and the permanent tube in my chest took a considerable time to get used to. Although life seemed to be moving incredibly quickly, I found myself physically becoming a lot slower. The lifestyle was completely new when compared to how active and involved I had been just weeks prior. It was painful and frustrating to see myself transforming in such a way; however, I held on to the belief that it would all return when this was finished.

The intention of the first block of treatment was to extinguish as much of the cancer rifling through my blood as possible. An important test then awaited me at the end of the first treatment block in which a bone marrow biopsy would identify if the treatment had worked—this would be an advantage for the further treatment stages to come. I didn’t think any more of the results as I just expected everything to move smoothly. I was feeling fairly perky considering the circumstances; I was eating twice as much as usual, I was keeping as active as my body would allow me and my digital support network enabled me to feel normal, which provided me with an ability to divert away from my reality.
Unfortunately, when attending the hospital for the start of the second block of treatment, my perspective changed very drastically. My consultant visited us in the isolation room we had been given for the day and I could tell straightaway that something was wrong. I saw the exact same concerned expression as I did on the faces of the doctors the night I was diagnosed. The topic of the bone marrow biopsy was immediately the focus and we discovered that the previous treatment had failed. I was levelled up as a high-risk patient which meant my treatment immediately became more prolonged and intense.

The experience put a whole new spin on having cancer. I’d been feeling better; however, the ruthless unpredictability of my illness had fooled me into it being a sign that I was on the mend. Clearly there was a long way to go. During that day I received the first bout of cyclophosphamide which gave me chance to reflect. Although I knew I had no control over what was happening to me, I did have control over how I handled the situation. There was more treatment to follow which would hopefully gain control of the cancer. I knew this was my life now and vowed to myself that I needed to have an input on what was happening to me.

When I started to acknowledge what was happening to me, there was almost a sense of confliction. Although I questioned its unfairness and why it was me, I realised there were positives in having cancer through what I had gained. As I slowly travelled through my journey, I was joined by others who provided me with this immense inspiration. Through the insight I gained from my friends I learnt of further ways to cope with cancer whilst also finding ways to continue to still live like a normal teenager. I found comfort in the understanding we could provide to each other and, no matter how challenging the situation eventually got, we were always going to be there for one another. Being brought together in such a challenging circumstance sparked an incredibly special bond. We focussed on the future and getting through cancer together, and the motivation of better days ahead got me through even the hardest of times.

This was called upon particularly when I experienced a toxic reaction to one of the chemotherapy drugs during the third block of treatment. This was an incredibly rare occurrence; my condition declined rapidly, and I found myself being transferred to another hospital due to the complexity of the issue. I spent a considerable period isolated in a high dependency unit, dosed up on a cocktail of pain relief, in which the only way I would get better was for my body to heal itself.

Then there came a turning point whereby, whilst covered by the blanket of immense positivity from my family, my body slowly began to mend. I believe that glimmer of hope kept me going. The transformation to my appearance was unbelievable. However, I found myself in disbelief as specialists worked incredibly hard throughout the process to gradually make me better. The recovery process entailed learning to walk again whilst also slowly being reintroduced to food. It was challenging; however, I was just incredibly overwhelmed that I could eventually return home.

As I embarked on the final block of intense treatment before the maintenance stage, I was aware of just how close I was to gaining some normality. I was excited about the prospect of being on less intensive treatment, which would allow me to regain my independence by returning to school. It was challenging as I tried to reintegrate with my friends—I’d lost a lot of confidence and had to learn how to talk with people my own age again having spent a considerable period in adult company. Nevertheless, I was determined to get involved with the activities and hobbies I’d once been dedicated to. It was around this time I realised just how much change had occurred—I’d hoped everything would have paused whilst I was away. However, everything did rightly carry on, which I had to accept.

I eventually got involved with organisations which aim to support young adults through cancer. Their events enabled me to reintegrate with others who knew what it was like. I valued these moments incredibly because we could be honest with one another about our experiences and be able to continue as normal teenagers. I would come away from these events buzzing with fulfilment just like I had done years before when I’d finished playing rugby. These events also enabled me to find ways of expressing my journey. I was further provided with a platform to share my story through giving talks. Through these opportunities I’ve gained a passion towards using my experiences to help others.
Having completed my treatment, I am now in remission. It was a moment which I could only dream of throughout the three-and-a-half-year journey. A significant moment for anyone completing cancer treatment is to ring the end of treatment bell. The toll of the bell rang throughout my journey and I watched on enviously and inspired by those who had got to that point. When it came to my turn there was a mixture of emotions which signified the biggest milestone in my life up until that point.

It was after my treatment finished that I could start to process everything that happened and explore ways to positively use my experiences. Having cancer taught me a lot of lessons not only about life but also about myself. I feel privileged to use it to understand and empathise with others.

The Spot Leukaemia campaign is incredibly important towards raising awareness of the rather ordinary signs and symptoms of the illness. For people experiencing an unusual or prolonged bout of fatigue or weight loss, this could be the key to catching the illness and intervening early to increase the chance of survival. Unfortunately, having cancer is life-changing and the process is prolonged during the years of treatment. I was fortunate to have been supported through the challenges I faced in such a way that I am now passionate to share those experiences. By having a platform such as this campaign, it enables people to tell their stories with confidence. Providing the ordeal with a sense of purpose I believe enables optimism to be found in the most difficult of times.

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