Neil

In 2021, I was 36, married with two girls and leading a busy life. I was fit and healthy, having completed the London Marathon in October 2021. I had no family history of health issues, with the only minor thing being asthma caused by hay fever, which was very mild.  

In January 2022, I developed a bad cough which I suspected was COVID, although the tests all came back negative. As it didn’t improve, I went to see my GP who, over a number of appointments, tried all the usual things like inhalers, antibiotics and steroids. I had to keep chasing my doctor for appointments and tests because I knew things weren’t right and wasn’t prepared to let it go. It’s one of the messages I really want to give in my story because for me it was so important to be persistent.

By May 2022, the cough was keeping me up at night and I was starting to bring up a lot of stuff. The GP had done everything at a local level, so referred me to respiratory experts. At that appointment I had lung function tests and we discussed trying injections to manage what seemed to be asthma, rather than using inhalers. 

The final part of this appointment was a CT scan. The scan showed what looked like cavities in my lungs, which they thought was caused by aspergillus (a condition caused by a type of mould which can affect the lung and cause breathing difficulties).  My tests were discussed at an MDT meeting, and I was told that a consultant haematologist who was at the meeting said he wanted to do a biopsy of my lung to rule out malignancy. 

I would urge people to be persistent if they think something is wrong!

Neil

When I went back for the results of the biopsy, I was stunned to hear that I had stage 4 classical Hodgkin lymphoma, including in  my lungs. It was a bolt out of the blue. Everything went blank and I simply couldn’t take anything in. My wife was with me and she asked about 20 questions, but I can’t remember one of them.

I was given a book about Hodgkin lymphoma and an appointment was made for me within haematology a week later.

I started to look at the Lymphoma Action and Macmillan website and read the Lymphoma Action book and gradually things started to make sense. I also read stories of other people who had been diagnosed with Hodgkin lymphoma, which I found really helpful and their experiences kind of settled me a bit. I was going to give it everything!

The consultant explained that I was going to have six cycles of an intensive treatment plan called BEACOPPesc (bleomycin, etoposide, doxorubicin (Adriamycin®), cyclophosphamide, vincristine (Oncovin®), procarbazine and prednisolone; a higher-dose regimen is sometimes called BEACOPPesc which means escalated dose) in three week cycles. He explained that it was going to be hard and explained the side effects I was likely to experience. I would feel tired and would lose my hair, all of which happened. 

Before starting treatment my dad, my brother and I went to a Turkish barbers and had our hair shaved off and my brother and I removed our beards too. I wanted to take control and saw this as a way of getting the first win over lymphoma. 

I was so nervous going into the first round of chemotherapy. I had no idea about how it was administered and I had never thought I would be someone going through this. I went in on Thursday, Friday and Saturday to receive the chemotherapy and the following Tuesday I slept for the first time in seven months. The cough had completely gone. 

For the first three cycles I had no issues, although what was left of my hair fell out pretty quickly. But by cycle 4 I started to get ulcers and by cycles 5 and 6 they were all over my mouth and under my tongue, causing me an enormous amount of pain.

Fatigue crept up on me  too and about half way through the cycles it was taking hold and I was falling asleep in the chemotherapy suite. After the second round of chemotherapy I had a PET scan. My doctors said they were really happy with how things were going. I had my final chemotherapy in January 2023 and am gradually building up my strength. 

Despite having started a new job just before my diagnosis, my employers have been fantastic and work has been adjusted so I can work when I am able to. In fact, having recently finished treatment, everything seems very strange. My life is no longer revolving around treatment, but it doesn’t feel back to how it used to be either.

My health is so much better than it was back in May 2022. I have lost the cough, I am no longer out of breath, and the asthma that occasionally troubled me seems to have improved too. 

I see my experience as a second chance at things; almost like a warning shot. I am re-evaluating what is important and focussing on things that make me and my family happy. It has also been a time of really appreciating what I have in life, like a wonderful family and amazing parents.