Tom Kerton

19-year-old Tom had just turned 16 when his life changed. He was supposed to be starting the next chapter, attending college, but instead he was diagnosed with acute lymphoblastic leukaemia (ALL) on World Leukaemia Day. Here, Tom shares his Spot Leukaemia story.

Before my diagnosis, I was a healthy teenager with hopes and dreams for the near future. Having just finished school, I was ready to start the next chapter of my life. Yet all of this changed on 4th September 2017, a week after my 16th birthday. 

I first realised something was up when I began to feel lethargic and short of breath. I was also randomly vomiting after little exercise, even just walking up the stairs. This got worse and worse over time, and it took about a full two weeks of it progressively getting worse before I realised there was something more at hand than just feeling under the weather, so I decided to go to the GP. 

The GP didn’t like my fast heart rate, so she sent me to the hospital to have an immediate blood test. After arriving at the hospital, they couldn’t give me a definite answer to what was wrong with me until the blood results had come back. The doctor at the hospital speculated that it could’ve been a liver infection. I had the blood test at around 6pm and we didn’t hear from the doctor again until 10:30pm; however, they had received the results a while before this. They had checked the results over many times to make sure they weren’t giving me a false diagnosis, as the doctor and nurses were so shocked by the results. 

They told me I had acute lymphoblastic leukaemia (ALL). When I was given this diagnosis, my first word to everyone in the room was ‘shit’. Now, looking back, that was the perfect thing to say as that was exactly the hand I got dealt; and the easiest way to explain what going through leukaemia is like.  

It was 4th of September, the day of my parents’ wedding anniversary, one week since I’d turned 16. And it was also World Leukaemia Day. 

The day after my diagnosis I met the doctors that I would be treating me over the next few years of my life. They explained to me what was happening and what I was to expect, but like in films and TV, it went in one ear and came out the other.  

When we were being told that the treatment plan spanned over three years, my mum found that hard to believe and even said how she couldn’t see that it would ever end. For me, from day one I would say that I have been very accepting of what life had in store for me. The way I looked at my cancer was that I could either sit and moan about what had happened to me, which would make me feel worse, or I could get on with it and keep pushing forward so I could get it out of the way and make my life free of cancer.  

The week treatment began was the week I was supposed to be starting college. I had initially told them that I would be in within a few weeks after I got back on my feet; how wrong I was to think that. At first, I felt fine and thought that treatment overall was going to be a breeze until I had my first dose of cyclophosphamide; within hours I was throwing up and felt really ill. This made me realise treatment wouldn’t be so easy.  

Soon, it was time to start with the next harsh chemotherapy known as methotrexate. As the doctors knew I was very sensitive to the chemotherapy, they gave me a low dosage, which I am now glad that they did as this chemotherapy made me very sick and I ended up getting mucositis. The ulcers got so bad that I couldn’t talk, eat or even drink; I had to constantly hold my mouth open otherwise there was just pain. Nothing was working to treat the mucositis, so I was transferred from Gloucester to Bristol for specialist care.  

After arriving, I was quickly set up with fluids and a morphine push-to-release machine to ease the pain. I hadn’t eaten for two weeks and so was given nutrients intravenously through a drip. I don’t remember much of the two weeks before this, or the following week and a half afterwards, as I was so out of it due to the pain and the painkillers.  

The doctor told me that my case of mucositis was the worst that they had ever seen, but eventually, I began to heal until I was well enough to return home. From this point on, I was having lower doses of the chemo as I was so sensitive to it. Even then, I had to stop treatment a few times due to having a low blood count or I would become jaundiced. Because of this, we found out that my liver could not process the chemo quick enough compared to other people, meaning I always had higher amounts of chemotherapy in my body than usual. This was what was causing me to react so badly to treatment.  

By this point, because I had been essentially bed-bound, the muscles in my calves and thighs had all shortened, meaning I couldn’t get my heels to the floor whilst walking. This made it difficult to walk, causing me to be very unbalanced when stood up, and I had to have a lot of physiotherapy to stretch the muscles back out. 

It came to June 2018, and I had finished my intensive block of chemo. From this point on I had basically two and a half years to go of chemo tablets every day, one treatment of intravenous chemo a month, and a lumbar puncture and intrathecal every 12 weeks. During this phase, my hair started to grow back and I regained some strength.  

In September 2018 I was able to start the college course I was supposed to start the year before, and even though it was only three days a week (of which I was only in for about four hours at a time) I really struggled to handle it as it would exhaust me. People never understood this as I didn’t look ill anymore, despite still having chemotherapy and feeling the effects of it. However, I started to get more used to getting out and about as time went on and I managed to live a somewhat normal life when on this phase of treatment. I was going out with friends, and I was even in a relationship again which helped me through the tough days of chemo or when I was feeling down due to not being able to keep up with everyone else. I lived like this for a while with the only problems being jaundice and struggling to stretch the muscles out in my legs.  

Turning 18 whilst taking chemotherapy was strange as it was not everything that I had expected. I could still drink alcohol, but not much. My family worried over me more as I was not the same as everyone else. All this did put a strain on my mental health as I wanted to get out into the world, but my health stopped me from doing so. I missed out on a lot of my important teenage years. Everyone else around me had progressed with their life and I felt like I had achieved nothing, when really I had climbed up the metaphorical treacherous mountain known as cancer. I was still on that journey, just making my way down that mountain. 

Life carried on as normal for a few months after my 18th birthday. All seemed to be going well, until the early hours of the morning on the 31st of December. I was just about to go to bed but had acid reflux. I headed downstairs to grab a tablet and didn’t turn the light on, which was a bad mistake – as I neared the bottom of the stairs, I missed the bottom step, and all of my weight went onto my right ankle in an awkward angle; I dislocated and broke my ankle in three places. 

I had an operation to put in four metal plates, though the recovery from breaking my ankle and the operation was really hard as I was still on intravenous chemotherapy. I found it hard to walk without pain and the muscles in my right calf and ankle had shortened again. The physio was hard, even more so when it was interrupted by COVID-19.  

When COVID-19 hit, I was added to the clinically extremely vulnerable list, meaning I wasn’t allowed out of my house for anything other than a hospital appointment, not even physio. I found this hard as I wasn’t seeing anyone, and my recovery was suffering. When the rules relaxed, I started physio again and managed to walk a little better, but I was still walking with a crutch. This carried on until after my treatment had finished. 

I took my last chemo tablet in December 2020, had my last intravenous chemo in January 2021, and my final treatment of a lumbar puncture and intrathecal on 15th February. Shortly after this in March, I had a tendon lengthening operation to lengthen my right calf. The recovery from coming off chemo is different than I expected, as it took longer to get used to being off of chemo and trying to recognise what the new normal felt like; I was so used to feeling sick and tired all of the time. 

In some ways, I am grateful for having leukaemia – being diagnosed with cancer at a young age has given me a different outlook on life. I can sympathise more, and it has made me a better person overall. 

However, I think it is important people experiencing symptoms don’t just ignore them without getting checked out. For me, it’s also important to remind people that these diseases still exist, even though they might not be a part of their everyday life. 

My advice to others would be to take every day as it comes – try and add as much laughter as possible, and if you can, try and laugh at yourself and joke about it when the time is right. 

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