Unfortunately, with these things you can never quite pinpoint when you first became “unwell”. But I do know that I was down as a stem cell donor match for a patient in May 2023 and I went through all of the medical checks. Interestingly I was told my ESR rate was elevated. I had it rechecked and was told it was probably due to allergies. Around that time I started to notice itching on my legs, but due to having allergies and eczema I didn’t ever really think much of it. In fact I did have a doctors appointment at one point for some skin cream, but this was never flagged as an issue. And it never occurred to me that itchy skin could be a symptom of something more sinister.
In September 2023 I had a ‘viral infection’. I was very run down with work and was told that the infection wasn’t clearing because I needed to rest. I had a cough for several weeks which was concerning and extreme tiredness. But with some bed rest I started to feel okay. It was around this point I started to get some muscle weakness and chest pain but was told it was nothing to worry about.
Around 6 weeks later I woke up with a stiff neck, and then the following day a large lump on my neck. I immediately made a doctors appointment and was told that it was another viral infection and there was nothing I could do for 6 weeks as I had to allow the glands to go back down. I had no symptoms of a viral infection aside from being a little tired. I worked as normal however I noticed the lump getting bigger, more painful and a second appeared.
I made countless trips to the GP, urgent care centres, walk in centres and A&E pleading with doctors to take me seriously. I couldn’t even get a blood test and just got sent away with antibiotics. At the 4 week mark I finally saw a GP who shared my concern. She advised that it looked like the glands were potentially filled with pus but said I needed an ultrasound. She referred me however I couldn’t wait and paid for a private one. The doctor who did this ultrasound advised that there were bigger swollen glands that I couldn’t see on both sides of my neck and this was the first time I had heard about Lymphoma. He advised me to get a blood test urgently and get this investigated.
I struggled to get an appointment with my GP and it took a couple of days to get a call back. She advised that I was going to have an urgent referral for a cancer investigation which would be a biopsy within 1-2weeks. I was told to cancel my family holiday and stay home in case I became very unwell. I didn’t ever receive an appointment and so I started calling around to chase this up. I was given an appointment for 7 weeks time and told there was a backlog. This just added to my stress and anxiety and so I started exploring my other options when I recalled a private healthcare policy with my workplace.
Fortunately I was able to book a same day consultation and biopsy and reduce the wait time for my results. I waited through my birthday, Christmas and New Year, and then on the 2nd of January was told that my biopsy was indicative of a Lymphoma. By the 4th January I was in A&E with chest pains and later that evening officially diagnosed with Hodgkins Lymphoma. Following a PET Scan I was staged at 2A Unfavourable, with a 6 month chemotherapy treatment plan. Unfortunately it was now in both sides of my neck, both armpits and my chest. I often think if I was taken seriously earlier, this would have been caught at stage 1. But there’s no point dwelling on that as it is important to focus on recovery and moving forwards. For now I am navigating treatment and trying my hardest to get used to the side effects, some of which you’re not prepared for. It’s a difficult journey and can’t wait to make it through to the other side and put this behind me!
