Adam

At 27, I had a dog-walking business and worked part-time in retail. I was fit and active – not only walking dogs for around two hours a day, but also regularly playing football and swimming, and travelling as much as money and time would allow.

About four years beforehand, I had noticed a lump in my armpit and had been to my GP. At the time, he reassured me it was fatty tissue. Although the lump didn’t go, I ignored it. That was until July 2018, when I noticed the lump suddenly get a lot larger. I also noticed lumps in my neck and chest, and the right hand side of my chest looked like as if it was curving inwards.

I didn’t feel ill and was just getting on with my busy life, but this change worried me so I went back to the GP.

As soon as I lifted my arm up, he told me that he was going to refer me to hospital straightaway. This was the start of a couple of months of tests, including X-rays, ultrasound and MRI scans, numerous blood tests and ultimately a biopsy.

Like many people in their 20s, I thought I was invincible. I never thought anything could be seriously wrong. So I was totally shocked when I was told I had nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) stage three, a slow growing type of lymphoma. It took a while to sink in that I had cancer.

In a weird way, I felt a bit of relief because now I knew what the lump was.

Adam

Things moved really quickly after that. I was introduced to the haematology team who explained that because NLPHL is a slow-growing type of lymphoma, they would need to assess whether I needed treatment straightaway or would have a period of active monitoring (watch and wait). A PET scan revealed that the lymphoma was at a stage where treatment was needed, so in October 2018 I was told that I would need six cycles of R-ABVD chemotherapy and growth factor G-CSF 4 days after the chemotherapy for five days.  

I felt that my life was on hold and I no longer had control over it.

I told very few people. I felt embarrassed to tell my friends, so only told my family and my manager at work. My parents, brother and sisters were really supportive and my dad went to all the treatments with me.

When I went in for my first treatment on 2 October 2018 I really didn’t want to go through with it. It felt like this was happening to someone else. But I knew I had no choice, so got on with it.

I really didn't want to go through treatment, but I knew I had no choice.

Adam

Treatment wasn’t as bad as I thought it would be. I got away with relatively few side effects, and only remember feeling sick once. I started to lose my eyebrows and leg hair but was glad that my hair and beard didn’t fall out completely. The things that were the most problematic were constipation and insomnia. In fact, it was the G-CSF that caused the most trouble, causing really bad hip and back pain, although even that improved over time.

Physically I was acting like nothing was wrong and I was trying to keep things as normal as possible. I continued to walk the dogs, although looking back, I think it was the dogs that were walking me!

I had still not told my work colleagues, and they were asking questions about why I was off. I didn’t feel ready or able to tell them at the time, so made excuses like I had things to take care of and that I would be back at work soon.

I had a scan booked for 22 November 2018. I was surprised at how quickly this had come up as, at that point, I had only had three cycles of treatment. But that scan was really reassuring as it indicated that I was responding to the treatment.

In February 2019 I developed a high temperature. My mum noticed I was looking red, and I had no energy. Just having a shower was taking all my strength. We realised that this was a red flag moment and that I needed to get straight to hospital.

I had developed neutropenic sepsis and needed to be treated with antibiotics and G-CSF injections to help my neutrophil count recover faster. I was in hospital for a week and my next chemotherapy was delayed.

I had six cycles of chemotherapy over a six-month period, finishing in March 2019 where I had another scan which came back clear. I remember crying when I heard the news. It was such a relief for me and for my family. I’m fairly sure that the dog walking helped me recover more rapidly. Even on bad days, I had to take the dogs out, which helped keep my fitness up, and probably helped with potential fatigue. They were always so pleased to see me, and they stopped me from thinking too much about the lymphoma. They really made me feel much better.

I’m fairly sure that the dog walking helped me recover more rapidly. Even on bad days, I had to take the dogs out, which helped keep my fitness up, and probably helped with potential fatigue.

Adam

I returned to work ten days after my last treatment, and in the months that followed I went back to playing football and took up badminton as a new sport. I was really keen to give something back after treatment, so I did a charity abseil for Lymphoma Action down Liverpool Cathedral five months later! I also booked a trip to Israel six weeks after my treatment, followed by Sweden and then New Zealand, as I have always been a keen traveller. Looking back, I can barely believe what happened to me in that year. My perspective on life changed so much. 

At that point, life had pretty much returned to normal for me. But in the Summer of 2023, I noticed I had a bit of a cold and was experiencing sinus pressure and dizziness. I had been checking myself every two weeks since my lymphoma diagnosis and noticed a lump above my collarbone. I went to my GP who told me to come back in two weeks in case the lump was due to having a cold. During that time, the lump got bigger and upon returning to the GP I was referred back to haematology.

A PET scan followed which showed the lymphoma had returned in the same position as before – in my armpit, chest, collarbone and stomach. A biopsy confirmed the return of NLPHL and I was told that from September 2023 I would be put onto active monitoring.  

I felt disappointed upon hearing this news, but overall I felt OK.

Adam

The symptoms themselves were not as bad as when I first received my diagnosis, and since being told I have had a relapse things have remained pretty much the same as they were beforehand. It hasn’t stopped me from doing anything – I have continued to work, travel and stay active. I have three monthly checkups and am currently well and stable. 

When I was first diagnosed, I wanted to keep it to myself, but now I think it is important to learn as much as I can about lymphoma and to raise awareness of it. I am a volunteer with the Lymphoma Action Buddy Service, and have spoken to a Buddy myself who is on active monitoring, which was really helpful. I am also a member of the closed Facebook support group and offer support to others in the group by sharing my thoughts and experiences.

As I write this in May 2024, my partner and I have just completed Bridges of London! It was great to meet others with similar experiences, whilst raising funds and awareness about lymphoma.