Craig

In 2024, I was 31 and working for a local authority in highways. I’d finished studying at college alongside work and was just starting a three-year course at university to continue studies. At the same time my wife, myself and our daughter, who was six, were in the process of moving from a flat into a house. Everything was busy but everything was good. 

I noticed a lump on my neck. It felt different on one side to the other, but I thought it was probably just a bug, so didn’t worry too much. But it didn’t go away so I booked to see my GP the following week. The GP examined me and we spoke about the NICE guidelines and we seemed to be talking about lung cancer pathways. I didn’t smoke and had no problems with breathing, so this didn’t feel right, but it felt like the most appropriate route at this point. An X-ray was organised which didn’t flag up anything unusual. It was then suggested I have an ultrasound and that is when it started to get a bit odd. They said they would like to take me down the corridor to have an MRI straight afterwards. The scan found two lymph nodes in my neck that were larger than they should be, so a CT scan was then carried out which showed further lymph nodes that looked abnormal in the  lungs. 

A biopsy was carried out and I was diagnosed with classical Hodgkin lymphoma. I had heard of Hodgkin lymphoma but had no idea what I was facing. The main thing I wanted to know was whether it was treatable.

We have been fortunate that no-one in our family has had a blood cancer before, so my family were really upset, confused and very worried. But they were also fantastic and amazingly supportive too. We decided not to tell our daughter about it until I was about to start treatment. We told her school, who were fantastic and a great support to her. 

Initially the plan was to receive ABVD as the treatment method, but a week before this was due to start the results of a recently conducted PET scan revealed additional lymph nodes were identified and also the bone marrow in my sternum. This escalated the staging from I/II to III/IV. From there, I had two options for treatment; continue with ABVD or opt for escBEACOPDac. Both were discussed with me and I spent time looking at statistics and talking it through. It wasn’t an easy decision, but I decided to opt for the escBEACOPDac.

Six days after making the decision, I arrived at the hospital to have a PICC line installed and treatment started later that day as an outpatient. On day one I was in the mindset that I just wanted to get this started and get rid of the cancer. I felt OK on that first day until it got to the evening when I felt really sick. I had not taken an antiemetic and was sick that night and through the next morning. I ended up in hospital due to dehydration, prior to starting Day 2 of treatment. I felt so unwell and so weak at that point. From then on, I didn’t wait to feel sick before taking the anti-sickness drugs. 

I was being given filgastrim to treat neutropenia (low white blood cells) but was struggling with pain in my lower back. I thought the pain was because I was sitting awkwardly, but it improved for a while before coming back in cycle 2. I could see there was a pattern and it was explained to me that the pain was because the bone marrow was expanding as the body recovered. It was an indication that the treatment was working, which made it more bearable, but I needed pain relief to deal with it.

I tried to eat as well as possible to keep up my energy and kept myself busy to take my mind off things, remaining working but from home. But by the afternoon I was exhausted and needed to nap. The first couple of days after treatment were the toughest, but it improved until it was time to have the next treatment. 

I had my mid-point scan after two rounds of escBEACOPDac and things were looking really good; the consultant said there was no signs of cancer from the scan. It was such a relief and we dared to plan time away. But to ensure there were no cells that remained undetected, 2 more rounds of escBEACOPDac were scheduled.

I started to worry about potential long-term impacts on my heart and lungs so was keen to start exercising again to keep me fit and I wanted to eat as healthily as possible. But I felt I needed to be really careful with exercise as I didn’t want to dislodge or cause any problems with my PICC line. I tried not to put too much pressure on myself regarding fitness and although I felt my fitness was waning, I always told myself this is something that can be considered post-treatment. 

Continuing to work took my mind off the treatment I was going through, kept my brain engaged and kept me sociable too. My colleagues were fantastic and so supportive.

When treatment had finished the scan showed the treatment had been successful. This was wonderful news, but the fear of relapse was really high at the time, and continues to be in my mind even now, as I approach the 1 year anniversary of treatment finishing.

We have undertaken a number of trips as a family to Cornwall now, including for my Dad’s wedding which was amazing to be part of, and starting to plan going further afield as the anxiety reduces.