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From diagnosis to discharge: my experience with Burkitt lymphoma

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02 Oct 2017

Paul Harrison was diagnosed with Burkitt lymphoma at age ten. He shares his story and explains why he chose to take part in the Great Scottish Swim for Bloodwise.

Lauren and Paul sit with towels after competing in the Great Scottish Swim

I’m writing this on my first day officially discharged from Southampton Hospital, where I received treatment for sporadic Burkitt (non-Hodgkin) lymphoma and am now considered ‘cured’. While subconsciously it doesn’t feel any different to the last few years, when I think about it, it’s a huge relief and hopefully the start of something new and more positive.
Back in October 2009 I had just started secondary school and was starting to settle in when my whole world fractured. One afternoon on the team coach back from a swimming gala in Newport I began seeing double out of my left eye and my vision became blurred. I began to feel uncomfortable and fidgety and couldn’t bear the brightness of indoor lights and had to cover the left side of my glasses.
My parents took me to A&E in Dorchester. The previous weekend I had been playing rugby and took a knock just below my left eye. There was a small mark there and we thought that it was somehow related to my problem with my vision – as if the knock had caused some sort of internal bruising. A few hours into our hospital visit the situation had become quite concerning for the medical staff, so much so that an eye specialist was called in specifically at the time (it was the weekend and I’m very fortunate that he came in to see me). They thought it was perhaps something to do with the main arteries in my head or neck and decided that I should have an angiogram. That night, just 24 hours after initially noticing anything wrong, I was in bed at Southampton Hospital – quite distressed, but more than anything, physically drained.
Fast forward a week and after various scans and tests the doctors concluded that I had a tumour lodged in my left cavernous sinus (behind the eye, in front of the brain) and should undergo an operation to remove it. Prior to the operation the belief was that it was a slow-growing benign tumour.

However, in the midst of the operation - which involved cutting my head open, leaving a nasty scar running from the base of my left ear to the centre of my hairline – the surgeon noticed two key details. Firstly, the tumour had grown phenomenally since the scan just a week earlier and was now wrapped around optic nerves, rendering it impossible to fully remove – as a consequence, the surgeon could only take a large biopsy. Secondly, the surgeon felt suspicious lumps in my abdominal area. These lumps were not previously noticeable but could now be detected because I’d lost so much weight that week and because the anaesthetic made my body relax. This indicated that it was likely to be more than a benign tumour.

The surgeon’s suspicions were confirmed the next day when they found that I’d developed sporadic Burkitt non-Hodgkin lymphoma. It was already at Stage 4. The primary site where it had actually started was in my abdomen and it had then spread rapidly to a secondary site in my cavernous sinus which is the point at which the first symptoms began to show.
I was taken under the care of Dr Gary Nicolin (who is, rather fortunately, one of the leading consultants regarding Burkitt) and placed on the Piam Brown Ward. I was put on a course of chemotherapy (nine cycles) that would take place over the next few months, ending in May 2010. I had to wait for a Hickman line to be put in (to deliver the chemotherapy into my system) but with the cancer growing very rapidly by the day, the initial chemotherapy test cycle was delivered through cannulas (placed in my hands and feet). I remember this becoming very painful due to the constant puncturing and bruising of my skin.
My memories of the first few months of my chemotherapy are a bit of a blur, probably due to its physical effects and the fact that I was only ten at the time. For someone who didn’t like needles and who, at the time, couldn’t swallow tablets, it was very traumatic, but when I finally got the Hickman line inserted it became much easier. The chemotherapy was intense and consistently lowered my blood counts. This in turn made me vulnerable to infection and illness. In between almost every cycle I would have to go to Dorchester Hospital for up to a week for IV antibiotics and various blood and platelet transfusions. I suffered from all the normal side effects of chemotherapy (sickness, hair loss, nail loss, mouth ulcers etc), plus a dose of shingles and some even more unusual side effects, such as palmar-plantar erythrodysesthesia.
 While the day-to-day memories are a blur, these events stand out significantly:
●     Dr Nicolin explaining to us that although the cancer was very aggressive, this meant intensive chemotherapy could target the cancer cells easier and that if my body could cope with the harsh treatment the cancer cells should melt away like ice-cream.
●     Suffering from a blood clot after the initial operation at Southampton, which gave me stroke-like symptoms. Dad had to give me two blood thinning injections into my leg every day for several months.
●      Contracting C. difficile and being rushed off from Dorchester to Southampton via blue light ambulance so the team there could manage me.
●     Suffering an anaphylactic shock after being given an antifungal antibiotic during the same spell in Southampton. It felt like my head was going to explode.
●      Receiving lumbar punctures three times a week at the start of treatment to give me intrathecal chemotherapy. These were intended to prevent the cancer spreading to my central nervous system and were incredibly painful especially as some had to be given without anaesthetic due to timings.
●        One of the chemotherapy drugs (I think it was called vincristine) made me feel very down whenever it was administered. This was surprising because I generally felt ‘blissed out’ for most of my time in hospital and as such was never particularly down.
●       Spending my 11th birthday in hospital.
●      Not going into hospital on Christmas Eve night 2009 because my temperature reading was 0.1 degrees below the level that would have required me to go in. I was defiant that I was well on Christmas morning but later that day conceded defeat and went into Dorchester.
There are many other small tidbits that stick out in my mind, but over the nine-month period that I was in and out of hospital there are large parts that are almost entirely blanked out of my mind. I’ll only recall these memories when someone tells me what happened – in some instances there are events that I simply have zero recollection of and do not remember experiencing.
I remember the day that I left Southampton following my final round of chemotherapy. It was prior to the start of the 2010 World Cup and I was playing the World Cup Xbox game against my sister Lauren. Dr Mary Morgan came into the room and told us that we could go. What a great feeling. Despite not quite being over the finishing line – my Hickman line remained for a few more weeks while I underwent end of treatment tests/scans – it felt like I could finally return to normality.
My hair started to grow back slowly over the summer holiday and I was back into full-time school for the start of year eight. Despite all the upheaval I managed to chip slowly away at school work and did not have to drop back down a year. I only went into school to visit a handful of times between the first half term of year seven and the very last half-term. I somehow managed to persuade everyone to let me join in on the most important event of the year seven calendar: the outdoor adventure residential to Dartmoor in June (still with my Hickman line in!).
Over the years that followed I’ve returned for numerous check-ups, initially four times a year before dropping to twice and then just once, while also having to dovetail this with eye hospital appointments given the impact of the cancer on my optic nerves and vision. Bizarrely my left eye (where the tumour impacted) is only a little shortsighted, although its visual field does have a blind spot on the inside of my vision. In the same time span the vision in my right eye has become quite shortsighted despite not being impacted by the cancer.
This may sound weird, but I consider myself very lucky. That’s because I caught the disease when I did, received excellent care, remained reasonably upbeat throughout, had full round-the-clock support from my family and the hospital staff, and I was back out within nine months. It was very fortunate that I went straight to A&E — because of the aggressiveness of this particular cancer the story could have been very different had I gone to the GP first. I think the fact that I was physically fit before the cancer diagnosis must have helped me to overcome the necessary intensive treatment.
Some of the stories from people who have shared their cancer experiences with me are harrowing. When I speak to my parents, they tell me how it became a very dark nine months. Maybe I’m not aware of how terrifying it actually was because I don’t fully remember the scale of it.
I’m now writing this aged 18, having just completed my first year of an Economics degree at University of Nottingham. I look back on the year of 2009-10 with mixed emotions – while I do sometimes want to break into tears looking back at how I suffered, I also feel huge relief that things have since transpired the way they have and that my life goes on. For me it was always about returning to normality – I still look back on my very early days at secondary school and think, almost bitterly, about what could’ve been had I not developed cancer. But at the same time I look at my achievements in comparison to my peers and it’s remarkable – there’s no discernible difference at all. In recent years there have been times where I completely forget about what happened and it only comes back when someone mentions something connected to my experience.
Earlier this year, I began to feel that I hadn’t given anything back or shared my experience with others who are suffering in a similar way. Following on from my full discharge, I felt it was a good time to start some fundraising and raise awareness of this rare but increasingly diagnosed cancer. As a result, I decided to take part in the Great Scottish Swim with Lauren on 26 August to raise money for Bloodwise.

Swimmers participate in the Great Scottish Swim

The Great Scottish Swim, Loch Lomond, 26 August 2017.

The Great Scottish Swim was a really enjoyable event in the most beautiful surroundings. The weather was not great but improved as the day went on. Lauren and I were swimming two miles and were in the first two-mile wave of the day. We were in the water at the same time as some other participants who were swimming different distances so there were lots of different coloured hats bobbing around. It was great to see so many swimmers having fun, pushing themselves to their limits and raising money for various good causes.

I completed the swim and was really chuffed to find that I was first out of the water, coming first in our two-mile wave with a time of 47:17, having just managed to keep the lead all the way around the course. Lauren finished not far behind with 51:10. It reminded me how exhilarating it is to swim in open water instead of up and down an indoor pool.
While it was a relatively small challenge for a competitive swimmer like myself, it’s hopefully the start of something bigger. I’m hoping to keep taking on open water challenges, with a view to possibly crossing the Channel in five years’ time.
I’ve raised over £350 so far. Bloodwise is a fantastic charity and without their work and the work of blood cancer charities I may not have made it to this point.

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