James

Before my lymphoma diagnosis, I was working in marketing for a sports governing body. I enjoyed running, watching too many sports on TV, travelling, photography, going to concerts, learning Spanish and playing video games

I first went to the doctor after noticing a lump about the size of a marble under my jaw. Looking back, I also remember having night sweats around this time.  Now I realise that this was also likely to be a symptom of lymphoma, but without going to the doctor for the lump, I’m not sure I would have thought about getting the night sweats checked out with any real urgency. It had been a hot summer and I had had night sweats in the past, so I didn’t think too much about it. 

When I first saw a doctor they believed the lump in my jaw was due to an infection in my salivary gland. I was advised to rinse my mouth out twice a day with salt water. I did this for around two months without noticing any change, so I went back to see my doctor and was given a hospital appointment for an ultrasound scan. Having had the scan, I was advised that I would need an operation to remove what was thought to be a benign cyst. Throughout this process and even after the operation itself, the surgeon seemed confident that it was benign. All of this was taking place amid COVID-19 restrictions, so it was quite lonely and bleak when I was in hospital overnight.

Two weeks after the operation I received a call from the surgeon on Christmas Eve. She told me that the tumour that had been removed was cancerous and that I would hear in due course as to what type of cancer I had and if any further treatment was required. On New Years Eve, I received a diagnosis of ALK-negative anaplastic large cell lymphoma. I understood this to be a fast-growing (high-grade) form of non-Hodgkin lymphoma, but one which had a good prognosis with the right treatment. 

I remember being handed a Lymphoma Action information booklet when I received my diagnosis, which I still have and refer to in order to remind myself of the type of lymphoma that I had! I found this to be a really helpful and reassuring source of information which I had to hand and helped me explain to friends and family what was going on with my body, as it was something which I would have found difficult to explain otherwise. Meetings with the oncologist could be emotionally overwhelming, and a bit of an information overload which I found difficult to take in at the time. Having the information to take home meant that you didn't forget what you'd been told.

The consultant explained that I would be treated with a combination of immunotherapy and chemotherapy, and I remember being keen to get it started. I knew it was going to be a process that would last a few months and just wanted to come out the other side as soon as possible to enjoy the summer and the upcoming European football championships. As stupid as it may seem, that was the light at the end of the tunnel for me and kept me going!

I started my treatment in January 2021, at the peak of the second wave of COVID lockdowns. I received six rounds of treatment at three week intervals and was given Brentuximab vedotin in combination with CHP chemotherapy. The drugs were given to me via a cannula drip, which took up to two hours to complete. I’m very squeamish so I didn’t enjoy going into hospital, but the staff did their best to make me feel as comfortable as possible and the care and support I received was absolutely fantastic.

The drugs were very strong, so I needed a good break in between them. I found myself getting back close to my normal self by the third week, only to go in for the next round. That was something I found difficult, as I would feel very nauseous after treatment, with very little appetite. Strangely, I was never actually sick during my chemotherapy – which was probably because of the strong anti-sickness medication that I was given. That said, I found that salty snacks really helped me with my nausea. I would have something called ‘chemo belly’ after treatment, effectively feeling very bloated and sick from the drugs I’d received and this affected my sleep. Your mind is so powerful – the night before treatment I’d have the sensation of ‘chemo belly’ despite not having had the drugs. I was told that this was common, and given medication to help with that, which I was assured was not just a placebo!

I was lucky that my mobility wasn’t affected by the treatment, so I was able to go out and exercise. I’d start with very short runs and build myself back up before the next treatment. I wasn’t up to anything for about a week and a half after the chemo courses, but I wanted to go back to work after that time, and found that working from home, as well as doing exercise, allowed me to retain some normality. Clearly that’s not for everyone, but it really helped me with my mental health and being able to get a good night’s sleep.

You may read lots about what you should and shouldn’t be putting into your body while you’re on treatment. Clearly, you want to be eating well – but some great advice from my nurses was that in the short term after treatment it was good just to be eating! I really craved beige food; baked beans, chicken nuggets, hash browns – so that’s what I had! It meant I had more energy and strength – and I enjoyed what I was eating!

The cumulative effect of each treatment round meant that I didn’t feel anywhere near to my normal self after my last treatment in May 2021, but I am very fortunate to say that as I write this in July 2024 I am back to full health. However, I have definitely had some ongoing mental health challenges. The magnitude of what I’d gone through didn't hit me until a few months after I’d finished treatment, and I actually struggled more with my mental health subsequently rather than during treatment. I found it difficult getting back to normal life after such a roller coaster of emotions during my treatment and in the period immediately following it.

I definitely feel like I want to make the most of life having been through something so traumatic in my 20s. I am getting married next year, to my fiancé who was by my side helping me through treatment in isolation together – in what was quite an early stage of our relationship back in 2020/21. Before I started treatment, I had my sperm frozen, as chemotherapy can affect your fertility. So, I hope in the coming years that we will be able to start a family.

Just under three years after I finished my treatment, I took part in the London Landmarks Half Marathon and was able to raise over £3,000 thanks to the support of friends, family and strangers. For me, this felt almost like closure on a difficult period of my life and was poignant given that running 13 miles felt a world away when I was doing little jogs during chemo.

Like most people, the idea of having cancer was simply not something that I had ever considered a reality for myself. I'd never really had any serious health issues and led a pretty healthy lifestyle, so it just felt very odd and unfair. But for me, if one good thing can come from my experience with lymphoma, it is to make others aware of this cancer.

I am proud to support the work that Lymphoma Action is doing to raise awareness during Blood Cancer Awareness Month and throughout the year. I hope that by hearing about my story and the positive outcome, people will be encouraged to get those lumps and bumps or any other symptoms checked by a doctor at an early stage. I feel that I owe it to others who have been less fortunate than myself when facing cancer.

My message to others is don’t hold off booking that doctor's appointment if you have any unusual symptoms. 99% of the time it won’t be anything serious, but if you’re in the minority then it is and it needs to be treated. Whilst it wasn’t fun to go through it, my experience of treatment was really positive and things moved really quickly once I received my diagnosis.

James has shared his story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September. Find out more about how you can get involved in our campaign to raise awareness and funds to support our work.