Lyle
Lyle talks about his diagnosis and treatment for Hodgkin lymphoma.
I was getting ready to take my girlfriend out, and noticed in the mirror that my neck looked bigger on one side. I could feel a big hard lump on the side of my neck.
I called my GP who suggested I go in so that she could take a look. There was absolutely no messing around, and I was referred to ENT (ear, nose and throat) at my local hospital for a biopsy. Two weeks later I was diagnosed with Hodgkin lymphoma.
If you spot anything you are concerned about, or you don't feel right health-wise, get it checked out.
Looking back, I never noticed any of the typical symptoms, such as losing weight or having night sweats. Without the lump I wonder whether I would have noticed?
I knew nothing at all about lymphoma, and was given the Lymphoma Action book, Young person’s guide to lymphoma, which was a massively useful resource. The specialist nurse warned me about searching online too much, so I didn’t look widely, especially as I found everything I needed from Lymphoma Action.
As I had just turned 19, I was asked if I would prefer to be treated in my local hospital or for my care to be transferred to a Principal Treatment Centre where they have specialist facilities for treating young people. A friend of mine was being treated for sarcoma in a Principal Treatment Centre, so I decided to choose that option. I have to say the hospital and the team were absolutely brilliant.
I was to be treated with four cycles of chemotherapy. My first two cycles were with a combination called OEPA (Oncovin, etoposide, prednisone and Adriamycin) where I had two weeks of treatment followed by two weeks off.
After the first two cycles I had a mid-point scan, which looked as though the cancer had gone, so my treatment was changed to COPDAC (cyclophosphamide, Oncovin, prednisone and dacarbazine) which is less toxic and in fact during this second phase of treatment my hair started to grow back.
I managed pretty well with the treatment. I was neutropenic after my first two cycles of chemotherapy, and experiencing some pains, but otherwise I didn’t really struggle too much.
Before my diagnosis, I worked as an apprentice in financial services. Being a ‘numbers person’ I really enjoyed the role, working four days in the office, and studying for the other day. The study element of the apprenticeship needed to be completed within a two-year limit, otherwise that element was classed as a fail. However, the organisation was incredibly supportive, giving me six months off during my treatment and ensuring the timescales were expanded so that I could complete my studies. I went on to complete my apprenticeship in late 2022 and am now a part of the graduate scheme at the same firm.
Having Hodgkin lymphoma has massively changed my perspective in life. In the past I never thought about health or the importance of the help charities can make to people’s lives. I’d been fortunate that I hadn’t needed any support before. But I realise that in most cases people need support through no fault of their own. That is why I feel so passionately about supporting Lymphoma Action.
Right from the start of my journey, Lymphoma Action was a source of trusted information and positivity. In the time since my diagnosis, we have been fundraising for this charity, hosting annual fundraising parties, and with my mum running the London Marathon in 2022.
Amazingly thanks to everyone's overwhelming generosity and kindness we have managed to raise over £18,000 and we’re not stopping there! This year, as well as our annual fundraising party, my friend Joe and I are taking on a Skydive for the Charity.
I will always be grateful for everyone who has supported our fundraising and left so many nice messages, it really helped to spur me on throughout my treatment and beyond.
I look at things in a totally different way now and am incredibly grateful for what I have. I appreciate my family, friends and girlfriend so much more. I’ve also been struck by just how kind and caring people who you don’t even know can be. People involved in my care, people donating money in my name, people you meet while undergoing treatment. It’s pretty humbling.
I am also taking more care of my body now. In fact, I feel healthier than I did before my treatment. I have joined a gym and am doing exercise 5 or 6 times a week now. This isn’t something I did before, but I’m really enjoying it.