Adam

Adam talks about how his diagnosis of nodular lymphocyte-predominant Hodgkin lymphoma made him realise he was not invincible.

Adam F doing abseil

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 2 hours a day, but also regularly playing football and swimming, and travelling as much as money and time would allow.

About 4 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 3, 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 6 cycles of R-ABVD chemotherapy and growth factor G-CSF 4 days after the chemotherapy for 5 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. 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 I developed a high temperature. My mum noticed I was looking red and I had no energy. Just having a shower was talking 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 6 month period and had another scan at the end. The scan came back clear. I remember crying when I heard the news. It was such a relief for me and for my family.

I returned to work 10 days after my last treatment. 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

Looking back, I can barely believe what has happened to me in the past year. My perspective on life has changed so much. I get frustrated with reality TV and all the moaning about silly things. This annoys me in a way it never had before.

I have gone back to playing football and have taken up badminton as a new sport.

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 went to the Lymphoma Action Conference in May which I found really interesting and helpful and attend a support group locally.

I have always been a keen traveller and try and book as many trips as I can. I finished treatment in March and went to Israel 6 weeks later, then Sweden followed by New Zealand. 

Now that I have finished treatment, I am really keen to give something back and I did an abseil down Liverpool Cathedral in August.

Story posted 1 November 2019