However, it’s not well-known by everyone – and that’s a good thing, because the less people who have it or know someone with it, the better. Ideally there’ll one day be a world with no lymphoma. But unfortunately, today’s reality is very different, because approximately 11,700 people are diagnosed with it in the UK per year. In 2011, I became one of them.
Symptoms & diagnosis
I was 15, and no-one close to me had previously had cancer. Despite this, I had already heard of lymphoma, but only briefly. In my GCSE Psychology class at the start of Year 10, I vividly recall learning about PET Scans, the case illustrated by a ‘Hodgkins Lymphoma victim’ having them, as I wrote in my exercise-book. At this point, I also had Hodgkins Lymphoma, but didn’t yet know. Later, I always remember that I called her a ‘victim’ because it reinforced to me that I then had no clue about what this cancer entailed. Sure, it’s a hard journey, but I don’t class myself a mere victim of it.
May 2010 – five years ago this month – is probably when that very first Reed-Sternberg cell began to go haywire, because I first experienced symptoms around July, and I finished treatment exactly a year later, in May 2011.
So my first Summer symptoms were itchy hands and feet, which aren’t enough to warrant a doctor’s visit. As the weeks progressed I was feeling slightly more tired, but again, nothing huge. However, by December to January 2011, symptoms were really disrupting my daily routine. I’d always considered myself lucky to live so close to school, because it’s fair to say I wasn’t the biggest exercise fan (some things never change!) but during January just walking down the road would leave me panting for breath and having to constantly stop. I knew I was unfit, but this was reaching new levels – a realisation that became even more profound when simply walking up the stairs at home would have the same effect.
And this wasn’t the only problem – I lost my appetite so also weight; decreased in general energy despite my determination to not miss school; gained a lump in my neck, and most of all, each night couldn’t avoid a series of drenching sweats – they were as if I’d just got out the shower, even though I definitely wasn’t very active! I was confused but put these down to a Winter virus – a mindset even my GPs agreed with, casually diagnosing me with flu, a virus or glandular fever, which I later learnt has similar symptoms to Hodgkins lymphoma, but is just slightly less sinister!
Eventually, my GP felt my neck and realised I needed hospitalising. So off I went, somewhat naively thinking I’d be home by the end of the day. In actuality, I didn’t return until 9 days and a Stage 2B diagnosis later.
If I was going to have cancer, I felt quite lucky to have Hodgkins, because it’s one of the most treatable types, with over 80% of patients living five years post-diagnosis, and most being permanently cured with very thin chances of relapse. And although I wouldn’t say I was ‘terrified’ to start treatment two days after my diagnosis (I more just wanted to get on with it so I’d be cured faster), it is a very new situation to find yourself in.
I had chemo via drip in Hickman Line most weekdays from January til May, as well as chemo tablets and steroids, which collectively provided me with quite a ‘moon-face’; neutropaenia; hair loss; sickness and reduced immunity, among other delights! My second PET-Scan was PET-Negative, so I was clear and just needed to finish two more chemo cycles – OEPA, which I’m sure some readers here will be familiar with.
It’s hard to give set advice for someone going through blood cancer, because everyone’s illness is different and we react uniquely, physically and mentally. However, I’d recommend trying to keep routine – I went to school whenever I could, as I didn’t want to fall behind with my GCSEs, but also because it was some normality away from the hospital environment. I even sometimes made classes before travelling the hour to Birmingham Children’s Hospital for treatment, and my nurses might come to my school at lunchtimes to take blood, flush my Line and change my dressing, meaning I could continue my day as usual, although perhaps be slightly put off my food!
Obviously it’s not attainable for every young cancer patient to maintain education, but for me it worked well as I didn’t need to take a big chunk of time out, and went straight from GCSEs to A-Levels to Cardiff University, where I’ve now just finished my first year studying English Literature and Journalism.
Support & life after treatment
Of course, many members of the blood cancer community will be older, but I found my involvement with Teenage Cancer Trust very useful. I’ve loved their events, from our Birmingham group’s meals out to bigger trips like Find Your Sense of Tumour and Royal Albert Hall shows– they’re so fun for making friends in the same boat (literally when I go to the Ellen MacArthur Trust sailing weeks!), both during and beyond recovery – I’m still an active member even over four years after entering remission!
Charity is also an amazing way to give back, and I’ve noticed Cardiff is a fantastic place to live in regard to this. Since moving here, I’ve joined Shine Cancer Support, which has groups around the country. We meet at places like bowling alleys and restaurants, plus raise money and awareness in the city centre. I’m also on next year’s Committee of Cardiff Marrow, having volunteered with them, the local branch of Anthony Nolan, since September. We’re passionate about finding bone marrow donors for blood cancer patients needing transplants, and are successful in signing hundreds of students onto the register.
Finally, although I usually stay far away from the Bioscience Department because I’m definitely more suited to media than medicine, I’m really proud that my uni is looking for a uniform cure for blood cancers from CML to myeloma. In fact, Cardiff Uni is a Leukaemia and Lymphoma Research Centre of Excellence, with £2million currently invested here. I’m sure the day where no-one with this diagnosis has to fear an unsuccessful outcome, is fast approaching, thanks to hard work, which Leukaemia and Lymphoma Research consistently contribute to.